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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> EDSIII/Carcinoid/Allergic to the 21st century/and.... http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1309060454 Message started by Ccc on 06/25/11 at 16:54:14

Title: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Ccc on 06/25/11 at 16:54:14

I have had two small carcinoids taken out recently. They were found incidentally and are caused by the Atrophic Gastritis "which is thought to be autoimmune in nature". I have a history of being very allergic to a lot of things and got partial relief through injections. When I switched to a different allergist, I retested and I was able to have my injections re-designed. They only allow 5 injections/person and I needed 7, so they were prioritized. I am 1 of just a few at this large injection clinic (1600 patients) who are told they need to stay on injections probably forever. I could never tolerate steroids and have been on Zyrtec the minute it came out, 24/7. I cannot go without my antihistamine or I feel yuck, even after years of injections. I have food reactions and indigestion with a achy gut most of the time. I went to the GI, a specialist in IBS, and that is when the carcinoids were found. I've gone to another to get them out. As for the carcinoids, I think they should be looking in the iliem but they aren't talking to me about it.

Okay, I think I happen to have benign (very small) carcinoids in my stomach due to my stomach acid disappearing due to the autoimmune process going on in my stomach. I have Hashimoto's and it is related to that.

I have mild coloring on my face occasionally with heat and no sweating. I don't drink liquor in warmer temperature or I'll melt. I do gain facial color on a small glass of wine. Being a cold intolerant person, I enjoy that in colder weather. I don't tolerate hot & muggy weather very well. I feel heat in my face from time to time or on my upper back but I don't get to see it since it may be inconvenient to get to a mirror. It's not hot flashes as much as I can tell... no sweating and it doesn't spread from face to chest.

I've been told by my first allergist that I have an extraordinarily active immune system. The allergist I have now has put me on Singular, Intal (can't take steroidal inhalers or they give me infections after about 7 days), albuterol, and zyrtec. I've weaned off the singular and only use the Intal & albuterol inhalers PRN, which isn't often. If I have a cold or I'm intubated, I get very inflamed very easily and I have very wet lungs. So I use a nebulizer with the same at those times. Zyrtec is my mainstay and when I really need more during peak environmental seasons, I either up it to 15 - 20 mgs or take Xyzal (5 mg).

I've got a history of allergic reactions environmentally and foods since birth. My first asthma attack put me in an oxygen tent and I had excema all over my body. It became less and less until I outgrew it in my teens. I still have a patch under my left knee that activates (gets itchy) from time to time. I think it is because I've eaten something.

I've also been treated alternatively for environment issues. This has included lots of vitamins, allergen extract, and food limitations. I've been away from it for a while but just getting back to it again.

I'm telling so much because I just learned that Ehlers-Danlos patients... that's me... subtype III..... are thought to frequently have MCAD or Mastocytosis. In the last year, I've had a tough time with lightheartedness, fatigue, and warm face (just slightly). My muscles/tendons/ligaments seemed to have a mind of their own and I have many unanswered questions about why they spasm and why I've had to do alternative stuff to get them better rather than the usual. I'm overall fatigued and mentally, I hate to admit it, sometimes I think my brain is Jello! All gets worse when I have an active phase in my muscles.

I used to have lightheadedness when I twist my head left to right (not dizziness) but now I walk around with it. I don't have it tonight though. I have heart palpatations, still, after thyroid treatment and sometimes chest pain........ particularly when my lungs are acting up (it seems to muscles between my ribs start to hurt when my lungs feel a pressure (it's gotta be asthma....low level... but the muscle thing is new in the last year).

I think my doctors are just hyperfocused on the carcinoids and not looking at a person who could have carcinoids
AND MCAD. For a long time, I've looked at things that point to antigenic activity in the body towards its own parts. And well I now have two incidences where it is proven.

I have an eye issue that no one knows why it is degrades periodically ....... much like my stomach. Some guess that it might be immune related. It is not rare like my gastritis..... it's something new they are have seen!

So what I would like to hear from the members is how would you go about investigating this if you were me. Carcinoid and MCAD in one person seems to be very unusual but I don't think it's impossible in my case. Remember, I've been treated aggressively to keep my allergies in line. So I think that might be covering things up here.

With my medical profile, I am someone who has a lot of procedures and that involves contrasts and all sorts of stuff. Just with my history, they identify me as a risk. So I think it is important to figure out. I did carry an epipen at one time. Yet, I did react to a dental anesthetic which had epinephrine in it. Sooooooo .... a very confusing case.

Please advise. (I apologize for the length).

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Riverwn on 06/25/11 at 19:52:19

Hi Ccc!
Im glad you joined us and i think we can be of help to you, theres always room for one more and this is a great group of people :)

I feel for you going through all of that. My advice would be to concentrate on getting rid of those carcinoids and retest to make sure they are gone--then see if your health gets better or not.. The problem is, Carcinoids can be dangerous so DRs wont usually look past them to diagnose other conditions until they are dealt with. Carcinoids also mimic Mast cell disorders so you dont know which of those symptoms are caused by it and which are caused by other things--until that is settled.

It doesnt mean that you dont have a mast cell problem, we dont know--but the Carcinoid has to take priority and you need to take this one step at a time. In the meantime I would stay on what meds make you feel better. I would also advise you to not take epi--IF you are a definite carcinoid patient--it can be dangerous--please talk to your DR about this ok??

Youre certainly an interesting case and we all know how difficult it can be to live with those symptoms. Hopefully, they will get active on dealing with your problems quickly and we will be here for you while they do. Im glad youre here!
Hugs
Ramona

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Lisa on 06/26/11 at 12:13:11

Hi Ccc, welcome to our forum!! I hope I can help you!

Ccc, I've been investigated for the Carcinoide Syndrome 3 times now. I have been in the hands of the highest experts here in Brazil, doctors who are renown to be the best authorities in Latin America on Carcinoids and that was after I was in the hands of the #2 authority. My own doctor, a dermatologist who is a specialist in mastocytosis also had doubts and she sent me back to the #2 specialist to have him retest me. Each and every time the investigations came back totally negative. So, I understand most of the processes and enough about both diseases and I think I can help you gain some understanding about your sitaution.

Ccc, I've spoken with carcinoid experts as well as mastocytosis experts. This is a sitaution of either/or. The symptoms of both are so very similar that they confuse even the experts and if you read enough on the carcinoid sites you will see that the highest authorities in this disease will openly admit how difficult carcinoids are to find and to treat and to diagnose. They are perhaps the most complicated tumors that exist within the human body because they are composed of endocrine cells and those cells are designed to produce hormones. This is why our symptoms are so very similar and why some of us give our doctors such a run for their money!!

Yet, the reason why your doctors don't give a whole lot of value to your allergies is because they really are inconsequential when compared with the carcinoid tumor. You are working with a cancer and it must be treated and dealt with properly for fear of it's mestastizing.

Yet, this things of your being allergic are part of a consequence of having a carcinoid for they produce hormones which create allergic reactions. This is why my doctors had such a hard time with me for my reactions and even some of the behavior was similar to a carcinoid. I get hypertensive with my anaphylaxis, but not a single one of these high level doctors knew masto well enough to know that it will break the rule of anaphylaxis for everybody knows that anaphaylxis ALWAYS occurs with hypotension - Masto breaks this rule. Yet, this hypertension with a crisis episode is similar to the Carcinoid Crisis, which can be extremely dangerous because more often than not, it will put your blood pressure dangerously high.

Yet, you can indeed have allergies - real IgE mediated allergies and it's very likely that you do indeed have real IgE allergies since you were a child - many of us do. However, the carcinoid will only make that "allergic" situation of yours worse because these tumors put out so many mediators, including histamine and serotonin, and other substances, that they will cause "pseudo-allergies" on top of the real, true allergies! So, they impact your "allergic" situation 10 times worse!

However, to get down to the root of your question - could you have MCAD and Carcinoid together? HIGHLY UNLIKELY! There is no known case in medical history of one patient with both.

Now, that having been said, I, for one, am not one to say never, for I have a case that is extremely complicated and rare and am so tired of my doctors saying, Wow, I've never seen that before!

So, what do you do? YOU MUST GO TO EXPERTS!!!

Ccc, you need to know that for your own safety you must not convince yourself of having masto or MCAD for if you were to do this, and you tell ER doctors or something along this line when you are in crisis and they think you are in anaphylaxis, then they could give you a heart attack if they were to give you epinephrine. Epinephrine is what a masto patient needs to get them out of anaphylaxis. However, for a carcinoid patient, who has such similar symptoms, this could very well kill you. This is why it's so very dangerous when patients try to diagnose themselves, they unwittingly put themselves into harms way because they don't know enough about their disease and the mechanisms behind it.

What is the TRUTH here? You are a carcinoid patient. You also have allergies.

Okay, this much you know is truth and with this you must go. As a carcinoid patient, you have the hopes of being 100% cured, did you know that? If your doctors can find those tumors and remove them, then you can be 100% cured! However, you must be very aggressive with carcinoid for once it mestastizes to the liver, the disease becomes inoperable and you must live with the "pseudo-allergic" reactions taking antihistamines and sandostatin-lar and whatever other meds carcinoid patients take. Ccc YOU must take your disease very, very seriously for it is proven that those carcinoid patients who are aggressive against their disease are those who live longest.

My concern, is that you would get yourself lost in looking towards MCAD as a treatment answer when the high probability is that MCAD is not the answer. This is how very confusing that Carcinoid syndrome/MCAD mastocytosis is for us when those of us patients who don't have any kind of spots are looking for answers. Most masto patients who have no skin lesions end up going through a carcinoid syndromea investigation because masto is more rare than carcinoid and Carcinoid is more dangerous than masto.

But, as I said, it doesn't mean that you can't be the very first case of both of these diseases in one patient. However, you MUST FIND SOME EXPERTS to see you!!! In order for you to be seriously investigated and ruled in or out, you need to see someone like Dr. Mariana Castells or Dr. Cem Akin in Boston. There are two other doctors I would recommend, but one of them is at the NIH and I highly doubt you'd be able to see him, Dr. Dean Metcalfe. The other doctor is Dr. Lawrence Schwartz in Richmond, VA. ONLY THESE 4 DOCTORS have the capacity to investigate you and fully rule out masto in your case. Your carcinoid will compete each and every time!! Any lesser doctor will automatically dismiss masto due to the highly unlikely chance you could have both together!! IT'S JUST THAT UNLIKELY that the vast majority of doctors won't even bother considering it, and I'm talking about doctors who KNOW masto. But due to the extremely high complex nature of trying to differenciate between both masto and carcinoid if you should have the both together, you can NOT go to anybody but the very highest authorities.

This is how complex this game is, CCcc, I've been there and know what I'm talking about and there are times when we really must go to the very highest authorities in the country!!

However, I'm going to suggest that before you consider going to Dr. Castells, Akin, Metcalfe or Schwartz, that you instead consider going to Dr. Richard Warner. He is one of the very highest authorities in carcinoid and although I'm not certain, I believe he knows enough about mastocytosis to know how to differentiate between them. If he feels that there is motive enough to suspect MCAD, I'm certain that he will personally speak with Dr. Castells, Akin, Metcalfe or Schwartz about your case. These doctors don't putzy around with our lives! They know the risks we are up against and they take their work very seriously. If he feels that your doctors have not done a good job chasing down those carcinoids and that this is the basis for most of your symptoms, he will do it! I've heard excellent reports of Dr. Warner and he's a fighter! He will take your case and be agressive working with you to find out exactly what is going on. If he feels that MCAD is on the line here, then I'll bet you anything that he'll personally get on top of this, for if this were so, then you would be making medical history of being the first patient with both Carcinoid and Masto.

So, Ccc, you MUST take your suspicions seriously, but I think that going to see the masto experts first, before seeing Carcinoid experts is going to lose precious time - time you can't afford to waste! You must act aggressively and must to STRAIGHT TO THE TOP!!

Here is Dr. Warner's contact information. You might want to consider writing to him through the carcinoid cancer foundation and see if he can help you. Explain to him what you explained to us here. He will do what he can to help you, I'm sure!

I hope I've helped you!

Lisa

Richard R.P. Warner, MD
Professor of Medicine
The Mount Sinai Medical Center
FPA Practice Associates 
5 East 98th Street, 11th Floor
New York, NY 10029-6574
Tel: 212-241-4299
Fax: 212-426-5099
Specialty: Carcinoid/Neuroendocrine Tumors (all locations)

this person - Grace Goldstein is my contact at the Carcinoid Cancer foundation. Write to her and ask for her help!! She's great!

Grace Goldstein
Chief Operating Officer
The Carcinoid Cancer Foundation, Inc.
333 Mamaroneck Avenue, #492
White Plains, NY 10605
914-683-1001
888-722-3132
www.carcinoid.org
 

http://www.carcinoid.org/

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by donohoe on 06/27/11 at 06:40:40

Wow! We too are fighting the same battle. My husband has been seeing Dr. Richard Warner since 2006 for suspected Carcinoid or other neuroendocrine tumors. We live in NC but spent a month in the hospital in New York with Dr. Warner overseeing my husband care in Sept. 2006. We saw 13 different "ologists" EVERY day. After a month, they decided to discharge Steve from the hospital. They were never able to find any kind of carcinoid or other neuroendocrine tumor. We still are in touch with Dr. Warner. In fact, we received an email from him this morning. He is determined to figure this out. Still fighting for Steve 5 yrs. later.
Along the way, as we have seen many other of the world's best doctors, Mastocytosis continues to be looked into. However, when they did a bone marrow biopsy at UNC, they did not find an over production of mast cells so they continue to dismiss this diagnosis. Steve's tryptase levels are always normal. In 2005, my husband had acute ileitus but they thought it was Chron's disease. They couldn't get it under control even though they used 6MP, Pentasa, prednisone, and remicade. Steve continued to have diarrhea 40 plus times a day and lost 50 lbs in a 6 month period. His face would flush from hot pink to a beet color. One time, he even had a full body flush from head to toe and we had to take him to the ER. Other symptoms included acute itching, he would itch until he would bleed, severe headaches, major brain fog, severe flu like symptoms, and would have episodes where he would almost loose consciousness and sleep for 3 or 4 days, periodic vomitting couldn't even work. Heat, emotional and/or physical stress seemed to make him very sick. His liver enzymes have always been elevated and his hematocrit is often high. They did a workup for Polycythemia Vera at one point and even looked at Porphyria.
NOW....even though we live in NC, our 11 yr old daughter is exhibiting much of the same symptoms as her dad BUT she does not flush. For years, we have been going to see local GI doctors for acute abdominal pain, diarrhea, headaches, nausea, just "feeling bad", and severe itching with hives. Last week, we went to Cincinnati Children's Hospital to see Dr. Philip Putnam. Her eosinophils were super elevated. Also, when he scoped her through endoscopy and colonoscopy Dr. Putnam said he thinks Rylee has MCAD but NOT Mastocytosis. Her tryptase levels are normal and her liver enzymes are elevated as well. We are not sure what he saw in the biopsies of her GI tract that made him think MCAD. When he discussed this with us, I didn't know enough about it to ask any questions. They have NOT done a bone marrow biopsy on her. This weekend she is struggling with periodic shortness of breath, burning sensation in her hands, pulsating pains in her fingers and lips, some swelling of the lips and scattered hives. This morning was very nauseated and had stomach pain.
Steve's situation seemed to have gone into somewhat of a "remission" in early 2009. He is now able to work but his face stays flushed and the color varies throughout the day. He stomach is still easily upset, sometimes has what he calls a "nervous stomach", but only has diarrhea a few times a week now, has headaches a few times a month, has some days he just feels bad, and has shortness of breath a couple times a month. BUT at least now he is not continuing to spiral down. We really thought he was going to die. We would certainly welcome any feedback anyone can give. thank you all so much for putting your heart and soul into this forum.

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Joan on 06/27/11 at 09:18:24

Hi Seeking,

Welcome to the forum! You've certainly been through a huge struggle, and now your daughter's having problems. That's a lot to take. Hope some people here can give you some ideas.

I have some questions and a couple of suggestions. First of all, if your husband hasn't seen a mast cell disorder researcher/specialist, I would try to get him an appointment to see one, and possibly a joint one with your daughter. You can check the names of some doctors people on the forum have used. If you haven't organized copies of all their medical records, especially test results, it's a good idea to start a notebook and order those.

Have both of them been tested pheochromocytoma? for parasites? Have they been tested for excess mast cells in their colons? H pylori? Crohn's? Celiac?

What, if any, medicines are they taking right now or have they tried? One way to figure out whether mast cells are involved in their problems is to start a regimen of mast cell stabilizers (gastrocrom) and antihistamines (H1 and H2 histamine blockers). Of course, run any new meds or supplements by their doctors first. I don't know the dosages for children, but most adults on this forum take 10 mg. Pepcid or 180 mg. Allegra, twice a day. Those block H1 histamine. They also take 150-300 mg. Zantac or 20-40 mg. Pepcid, twice a day. There are other mediators that can be causing problems, so often a mast cell stabilizer can be helpful, such as gastrocrom (2 vials, 4 times/day). If prostaglandins are a problem, there are meds for that, too, but they can be irritating to the stomach, so Tylenol might be a first thing to try. If he gets some relief from these, and you feel comfortable that carcinoid is no longer probable and the other things above are ruled out, then it's likely there are mast cells involved in some way.

Have you read about mastocytic enterocolitis? Here is a link to my doctor's website, Dr. Scot Lewey in Colorado Springs, CO:

http://thefooddoc.com/mastocytosis_enterocolitis.

He and Dr. Phillip Miner (in Oklahoma) have been researching this disease. It's also listed on the rare diseases website of the NIH. There are published articles, too, that you can Google.

I went on Dr. Lewey's regimen and found it to be a near miracle. In addition to the histamine blockers and gastrocrom, he recommends probiotics. Specifically he likes VSL#3. I used Align (available at most pharmacies and probably Sam's and Walmart, too). I also used bromelain (2000-2400 GDU) before meals. I prefer Country Life or Blue Bonnet brands. It is derived from pineapple stems, so you have to be careful if there's any reaction from pineapple. Another contributor to getting this under control was L-glutamine, which helps to normalize the mucosa in the digestive tract. It's taken 500-1000 mg., 2-3 times/day.

The last thing is to stay on a low-histamine diet, religiously. You can find it here:

http://www.chronichives.com/pages/lowhistamine.htm

There's an easy to follow chart their of what is permitted and what to avoid.

I'd recommend doing all of that at once to see if you get any results, but it's important to be cautious not to add more than one med at a time, in case of reactions.

I also wonder what kind of nutritional deficiencies have come along with this level of digestive disruption. B12 and other deficiences can cause neurological and other symptoms. Some people have problems even absorbing vitamin and mineral supplements that they swallow.

These are just thoughts I've had. Hope you find something to help both of them.

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by still seeking on 06/27/11 at 13:03:32

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Joan,
Thanks so much for your thoughtful insight. I am going to read up tonight on mastocytic enterocolitis. Originally, our daughter was diagnosed with eosinophilic enteropathy.

My husband has been checked for a pheo, paraistes, H pylori, Crohn's and Celiac disease (all of them multiple times). Orginally, he was diagnosed and treated for Crohn's but he only got worse and UNC said he had been misdiagnosed. He had an EXTENSIVE work up for all the neuroendocrine tumors. A pheo was one that they were almost positive he had but could never locate and none of his chemistries indicated he had a pheo. Only his symptoms lined up with a pheo. They did treat Steve with Sandostatin LAR for a possible Carcinoid and a list a medications a mile long. Nothing resolved the problem. Now, the only meds (other than blood pressure meds) for both he and our daughter is Zyrtec. Dr. Putnam did say he wanted to start our daughter a mast cell stabilizer, entocort, zantac and zyrtec. However, he has not called in her meds and I am waiting for a call back from him. For some reason, he had her do a 24 hr. urine collection to look at copper in her liver. We turned in her specimen today. Her liver enzymes are elevated. I guess he is trying to figure out if the liver situation is related to the possible MCAD or is it unrelated and needing separate treatment. Either way, she had to be off her meds to do the collection. I am hoping that he will now call in her medications so we can begin treatment for MCAD. I do have another question for you. How does he KNOW that MCAD is what she has???? She has not had a bone marrow biopsy. However, I know that the bone marrow biopsy is only good for diagnosing Mastocytosis. He did do a colonoscopy and endoscopy but what determines MCAD???

I called Dr. Akin's office and before they will see Steve and our daughter, they want copies of all medical records before they determine if he will see them. I am going to call some of the other experts tomorrow.

Thank you so very very much for taking so much time to respond back to me. I am going to do some homework and also look up the low histamine diet in addition to the probiotics you mentioned.

you are a blessing! :)

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Joan on 06/27/11 at 21:15:18

Sounds like you have a plan beginning to form, and a good one. I'm exhausted, but will try to write back tomorrow.

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Ccc on 06/29/11 at 11:36:48

Thanks for the great advice and the ensueing discussion between posters. Keep it coming.

I 'get' the importance of carcinoid detection. My doctors want to just check up on it later... at 6 months.. and that's the end of it. I'm the one saying... whoa, wait a minute! The endoscopic MD said questions about the ilium were good... which is why he is monitoring with a CgA. It is mildly elevated after biopsy but just before excision. He did leave clips in me and said they should expel by 2-3 weeks. If someone wants to do an MRI in the meantime, they should make sure the clips are gone with an xray. Hmmmm, not happy he put the clips in because who would ever do an MRI when I had clips there? However, would anything be seen relative to carcinoid on an abdominal X-ray? Does any one know? Has anyone had these clips?

Frankly, I KNOW I must have some sort of mast cell issue. And the carcinoids here are caused by the AMAG. They have been caught early and did not infiltrate muscle wall.... But I am still awaiting path report. My questions are: are they sure they are primaries and are they sure it isn't somewhere else. My whole reasoning here because of the high risk of mast cell Issues and my desire to feel better.

I've had cancer before (breast) and I know they use their judgement when it comes to unknowns. If it were up to the GIs, they would not do the CgA. I pushed for something to be done as it us a priority.

All I know is I don't feel great and something needs to be done. My PCP is doing extensive intolerance and allergy testing of which I have to pay a good portion. That's okay, I'm happy to do it just to get it done. My low acid stomach is autoimmune and is related to Hashimoto's. I've absorption issues and it has affected my bones and muscles. EDS III and other connective tissue disordered people are known to have a loose intestinal morphology. So I just gotta nail the carcinoid stuff down so I can move on to investigate. And being on prolisec took away muscle and bone pain, I think, (interesting, but it could have been lingering effect of anesthesia) but , frankly, I'd rather be off it as it makes me tired and I can't digest things. Caffeine is also helpful with pain and lung inflammation which I think is telling. I can't go without it .... and I really don't need much to 'turn on the switch'.

I actually think a trial of cromolyn would be telling. I've always loved the stuff in any other form. I've sometimes begged for it cuz the steroids give me infections. They start to work. Then I plateau, then on comes the infection. I'm talking about spray corticosteroids.
Thx.
-Ccc

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Riverwn on 06/30/11 at 07:00:45

Ccc,
I would ask about those "clips" first, someone has to answer it. Do an xray if necessary to know for sure. Once that is answered I would go for the MRI.. with your history you need to make SURE there are no masses anywhere from the breast ca and the carcinoids. Once you have those answers you will be clear to look at other things. Time is of the essence with any type of mass, so please contact your DR.. and let us know how you are!

PS, cromolyn takes a few months to start working as well as it will. I dont think a trial will help you because of that--snd the cost is about 400$ s month with no insurance. You can always try nasalcrom--it has cromolyn in it, its over the counter, costs only about 5$ generic and wont hurt you if you dont need it. Good luck!!
Hugs
Ramona

Still Seeking
The reason for the Bone Marrow Biopsy isnt the liver--its to see if they find mast cells. IF you feel that strongly about a mast cell problem with your daughter, I would call her DR and have him prescribe the meds he mentioned to you. IF she does well on them--responds and gets better, thats a partial answer right there.
Hope you get some answers and help soon!!
hugs
Ramona

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Lisa on 06/30/11 at 11:46:45

Not all metal is a problem for MRIs. I have titanium wires sewing my sternum together after my open heart surgery last year and it was no problem to go through an MRI in December. I also have a clip from my gallbladder surgery. They are not a problem with MRIs for they know that this material does not present problems with the magnetic forces.

Lisa

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Lisa on 06/30/11 at 12:03:37

Still Seeking,

The reason we do biopsies of our bone marrows is because depending upon the form of masto, this is where it shows the most activity. Yet, being that masto is a genetic disorder of the blood making system, this is also where it causes the most damage. By looking at our bone marrows the doctors find out two major things: one is for diagnostic purposes, the other is as a window into our overall health.

Depending upon the form of masto they will find aggregates of abnormal mast cells. Yet they can also find other pathological damage there and this helps them to see what the disease is doing. My bone marrow did not show the MC aggregates, but my form is known for this. My disease has to progress further for my tryptase is normal. My form is also known for that. But as time goes on, my tryptase should rise and with that rise the number of abnormal mast cells should too and so eventually they will see the mast cell aggregates there with BMBs. However, we know that my iron levels are below normal and that I have lymphocytosis going on and so this gives my doctors understanding as to what the disease is doing to me and this is GOOD. The more you know about your enemy, the better you can fight him!

As to the liver issues, if you will write me a PM and give me your email address I can send to you some articles which will help your doctors. Liver abnormalities have been connected to both SM patients as well as MCAD patients. But not too many doctors know this. So the fact that your daughter is showing these changes reinforces the suspicion of MCAD. My son also shows these abnormalities. yet, we've found a focus of MC aggregates in his intestines so we know he has mastocytosis for only mastocytosis causes the MCs to aggregate like this. He may or may not go for a BMB. If his tryptase is low they may not ask for one, but I may push for it anyway because if my son is showing the low iron and the lymphocytosis as I do, then it's best to get a baseline measurement now so that as the years pass, they can measure how the disease is affecting his body. Yet, my son is 20 years old and as much as I hate the idea of his going through this, he's old enough and mature enough to be able to handle these things better than if he were younger.

I hope this answers some of your questions.

Lisa

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Ccc on 07/01/11 at 18:13:35

Lisa & Ramona, I've got clips from breast surgery and they are fine with MRIs. But these clips are metal that can be attracted to a magnet. Why in the world they are in an EDS patient? We are known to have colon issues and apt to have needs for an MRI (Had 5 within the last 9 months and I am due in August).Anyway, they always ask if you have metal or clips in your body. I don't think any radiologist is going to do an MRI without checking for them. I think it defaults to an xray screening.

My mind is getting a tad twisted lately. I know my carcinoids are suppose to be small and every MD says they are nothing (initial biopsy says at least .3cm and at least .5cm). Excised tumors will give exact size and vascular symptoms. It's like they are trying to comfort me by saying, "Don't worry about it. Don't bother looking it up on the internet. They are common." They won't even call it cancer. Well, it bothers me more they say that or avoid the 'c' word. And maybe I'm just making something of nothing. I just feel I have a chance and don't want to pass anything by when if addressed now, it could avoid a lot or save my life.

Question: I questioned the 2nd GI doc on why my ileum wasn't being checked (which could not fully be reached by colon or endo -scopies). He said 'good question" an never got back to it. I also said that I came for digestive difficulties and proven malabsorption of Vit D... and no one is answering me and I know of no plan for investigating.

So the GI Doc said he would run a CgA. It was about 320. But I did not fast for it ......... should I have fasted (I'm reading where I should have)? I assume he is going to have me tested again to compare. Must I wait to be off of the Prilosec to get an accurate reading?

I am wondering why more is not being done to investigate and make sure carcinoids are not somewhere else. Does anyone know if it is standard to do a Somatostain Scinitography (sp?) or does that best used for suspected metastasis?

I'm also not thrilled with the high gastrin levels the prosilec is giving me due to the induction of carcinoid from the enterochromaffin cells (yes,I've been researching). I understand why it was given to me but don't the docs give something to counter the gastrin to keep it lower?

Lastly, do these mast cell disorders run in families? Is there any relationship to non-hodgekins lymphoma or acute myeloid luekemia. I have relatives that died young of those two types of cancer. This is the same side with the breast cancer history.

I was getting nervous and upset so I started looking on the itnernet to understand more. I'm eating soups and 'gruel' so as to be nice with stomach. My MD said he would get the pathology report to me on Tuesday so I could bring it to my endocrinologist on the 7th... so that is good.

Sorry this post is not very organized. It reflects where my heart is right now. I appreciate your thoughts and know none are you are MDs. I'm especially interested in knowing or confirming the correct testing in my situation.

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Ccc on 07/01/11 at 19:06:38

Lisa, thank you for the suggestion. I'm at the Brigham now and running into beaurocratic problems within the GI department. I'm with a IBS GI guru who made the mistake of seeing me for digestive issues instead prioritizing surveillance for cancer. (I can't figure that one out because 5 years before he dx'd chronic gastritis, by biopsy) He took 14 months to set up for the latest scoping.

Many people come form different countries to Boston for health care (and colleges!). Or even people, locally, who go to the city for a consult. It's different when it is that way vs using the specialists as your primary specialist. If I did not have the health issues I have, I wouldn't be there. I'd go for consults and then stay at the community hospitals. Ah, the healthcare landscape is changing so rapidly.

Anyway, within that department are GI docs who have knowledge in mastocytosis. I just think I should be with them for the carcinoid. Right now I am asking them to ask pathology to look for mast cells......... and the GI docs won't answer me. They just do what they want. Can you believe my IBS GI doc doesn't even want to see me beforehand? Poof... just go for the procedure. And I have a good PPO plan.

Thank you for your carcinoid referral though and I appreciate your time to tell me about your experience. It helps to know someone else has this dilemma. I know it is rare...... but so is EDS and so is having breast cancer at 34 and so Autoimmune Metaplastic Atrophic Gastritis......... and stomach carcinoids.

It's all zebra stuff. I call it polyzebratic issues.:-) And while there might be a different name for all the different things seen in my body, I don't believe that they are not connected. I just have a very hard time believing that. I have taken care of my health for many years and ... well, good thing I did! I guess it could have been a lot worse.

I wo't be going to New York. I'm already going to Baltimore for the EDSIII stuff. Even in Boston, there is a lot of difficulty getting the right report written for the specialists about EDSIII. Sooo, since it gives me orthopedic issues, I'm using my energy to go to Baltimore. I will have to settle the carcinoid issue here. But I will keep Dr. Warner in mind for when I have the energy and orthopedic power.

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Lisa on 07/02/11 at 03:14:31

Ccc,

Since you are in Boston, ask to see Dr. Greenburger, he is a GI specialist on Mastocytosis and he most likely will know plenty about carcinoid too.

You see, the quandary you are facing is that you are a known carcinoid patient and like I said, the chances are so very, very slim that you could have masto as well as carcinoid that the doctor won't and can't take you seriously! It's just too absurd in their minds, even with the other issues.

You are right, there may indeed be a connection and there is a potential study with just these patients coming out of Canada. Sarah from Canada has a geneticist who is considering looking into Eds/masto/dysautonomic patients to see if there is a genetic connection.

However, the issue here is where does the carcinoid come into this for it's a whole different ballgame here. Masto would seem more likely to connect with your illness, but it's the carcinoid which is the wild card, Ccc. You've got to see that in having the carcinoid it rather goofs up the theory for masto. This is why your doctors are not hearing you for although they have heard of masto they may not really know it well enough. And like it or not, you are going to find mast cells in the intestines - they are supposed to be there! But the idea of finding neoplastic mast cells this is what is highly unlikely and why they won't bother to consider this possibility.

If you were to contact Dr. Greenburger, he is the only one who may hear you and this is what I would recommend. For like I said, it's the wild card here and since it is KNOWN to be very difficult to diagnose and find and since it is KNOWN to give the same symptom pattern, all of your doctors are going to say, CARCINOID and not masto! They are going to think you are hypocondriac in recognizing understandable anxiety. Any one of us, even they, are going to have understandable anxiety and insecurity when we have so many issues and it's normal to say, MAYBE THERE IS SOMETHING MORE! This is why they aren't hearing you. They figure you are just being paranoid and if you were to work with patients, you'd understand why they think this of us. I had to go to see a gyno the other day for a woman in my church who is absolutely convinced she will react to the anesthesia they need to use for a simple histeroscope! She heard of a patient who almost died and she's convinced she will too even though she has no allergies and no disease and had some local anethesia recently and also went through a c-section. She's convinced herself that she's next!!! This happens all the time with doctors and it's not just with women patients but the men do it too. Our anxiety can so consume us at times that it deceives us. And since they know the facts, and they know the diseases, they figure that it's our paranoia and insecurity and anxiety which is speaking through us and not true understanding.

So, I know you're frustrated and upset about this and I fully understand what you are saying, Cccc, which is why I recommend that you contact Dr. Greenburger about this for he's the only one who I think will really hear your concerns. I don't have his email, you may be able to Google it.

Good luck and let me know how it goes!

Lisa

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Ccc on 07/02/11 at 04:47:43

Thanks Lisa. I had my eyes on 2 GI's: Hamilton (new--mastocytosis interest/work) and Greenberger (senior). Sometimes there is competition 'tween docs. My immunologist is running tryptase as a starter. He knows how allergic I am ... or was. I don't think the food issues are given much credit since they don't present as outright quantifiable issues. But waking up in the middle of the night wondering if I will make to the hospital on time just doesn't seem to count.

I think I will take it from a point of, I travel with an epi-pen, I have a carcinoid, I want to make sure I don't have both. They may want to roll their eyes but now they will need to back it up because if I do have some form of masto .... then they will feel a little more responsible in being correct in determining this. I may need to go to Baltimore first as I have found in Boston, with subtle, rare issues, you get more attention when they enjoy standing on their toes. I don't mind being a case study and teaching. But I do find that they stand on toes when well respected researchers validate one side of the equation. I just want an objective investigation. And proof, if I can get it.

Already I have so much that is so rare. But ignoring me because it is outside the box is not okay. I've got a well respected immunologist who happened to be the 3rd one I've seen in the area (all tops in MA) and he was the only one who could do something......... because he listened. It took several years before he could 'see' that corticosteroids give me infections. I still get 'the look' from MDs that don't believe NSAIDS bother me and I can't take them forever.

BTW, I thought some forms of Mastocytosis do become neoplastic.

Best to you Lisa!

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Lisa on 07/02/11 at 07:54:06

Yes, Ccc you are right, in truth, mastocytosis is a neoplastic disorder. However, because the neoplasm is so very slow growing they don't consider it an out right cancer due to how benign the disease is. It only becomes considered a "cancer" when it is in the aggressive form or joined together with a hematological disorder, then it's a different ballgame.

Ccc, I don't mean to harp on the same subject here, but you are walking in dangerous territory when you start talking about an epi-pen when you have a carcinoid. This is a well known NO NO for carcinoid patients for epinephrine will put you into what is called the Carcinoid crisis. I'm not quite sure what the workings are of this, but epinephrine can cause a caracinoid patient to have a full blown heart attack! You can't just assume that because you are allergic that it's masto, there are different mechanisms behind allergies and mastocytosis and although epinephrine is what gets a masto patient out of danger, it can literally kill a masto patient!! This is known by the doctors. They used to use epinephrine as a means to differentiate between masto patients and carcinoid patients for with the masto patient it will stop the flushing and reacting but with the carcinoid patient it has a totally opposite affect and can get them into such trouble that it will give them a heart attack!

This is why I keep going back over this ground with you in that you are presuming things that are very dangerous to presume. It's one thing to suspect something and go to a doctor and keep working to find a doctor who will hear you, but to keep insisting to the point of having an epi-pen and even considering using it when you have a known carcinoid, either you are not understanding your danger or you don't want to face it. I'm not judging you, so please don't think this. I fully understand how much you are feeling pressed and upset by all of the runnaround you are getting, but this is no ballgame and if someone doesn't help you to wake up to this, you could find yourself in very serious danger or dead. You can not use an epi-pen with a carcinoid. Have your doctor been medicating you with sandostatin-lar or some similar medication for if you are not medicated properly then all of the allergic reactions you have will continue going on for the mechanisms behind the majority of those reactions are likely to be either true IgE allergies or carcinoid. Until you get these things fully resolved, and under treatment, then even considering masto is difficult for you've not resolved the pseudo allergy sitaution that carcinoids cause.

I urge you to speak with Dr. Greenberger (senior) for he KNOWS MASTO. He will be who has the capacity to try to judge if masto is indeed part of your problem. Other doctors won't be able to for they won't know masto well enough to differentiate between masto and carcinoid. But this is something that you really must not do for yourself. It's just way too dangerous, my dear. So, please, don't be considering using an epi-pen it could e deadly too you. If you really must deal with your allergies, which are indeed known with carcinoid patients, then use the antihistamines. My oncologist when we were investigating me for carcinoid put me on Allegra 180mg on an SOS basis. It was tremendous! He told me that this is indeed standard care for carcinoid patients because they do have histamine release with the disease. Some patients are more "allergic" than others. So this indeed is part of it all.

This is why I recommend that you get in contact with Dr. Greenberger and see if he can help you. If there is any real valid suspicion for masto, I'm sure he'll do what he can to help you.

I hope this helps!

Lisa

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Ccc on 07/02/11 at 15:32:45

Lisa, I share your concerns somewhat but your advice presumes some things that are not true according to my MDs. Namely, they say I DON'T have carcinoid syndrome AND that these tumor are more than like benign. THAT'S what my MDs say.... my oncologist, my BWH GI, and my primary.

I'm the one who is making the connection between my health history and bring atttention (at least trying) to possibly conflicting treatment between all the specialists between 4 different health care groups (4 different medical computer systems). Right now, if my throat or nasal passages close down with swelling after eating something, it would be epi-pen, benadryl, and ambulance. That would be following MDs orders.

Given the connection of MC to EDS patients, the auto-immune basis of my assumed indolent carcinoids, my health history, AND that epi-pens are a conflicting 'issue' for both MC & carcinoids, I am researching it. Part of that is joining this forum. No MD said I should. Most don't know if the emerging patterns and info of Mc in EDS patients.

My health profile us indeed complex. I am questioning whether my treatment or lack thereof is appropriate. If anything, I am following doctor's orders which may not be correct. You do know that epi-pens require prescriptions.

As I said, we have had early deaths in our family tree with the associated cancers to mastocytosis... I believe but I need to research this more.

I think the situation requires a more comprehensive look so that if I do show up in an emergency room, my medical info will be interpreted properly. It's going to take 6 months, at least to figure this out.

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Ccc on 07/02/11 at 20:08:55

In case anyone is wondering why I keep questioning my predicament, I found this as something that underscores my concern:

"Gastritis, esophagitis and peptic ulcer disease are common. A period of lethargy usually follows the attacks."

"Endoscopy is warranted in patients who have upper gastrointestinal symptoms unresponsive to treatment. Bone marrow biopsy and biochemical tests are required for the diagnosis of systemic mastocytosis in patients without skin involvement. The risk of associated malignant disease in adults with mastocytosis ranges from 2 percent in those with only urticaria pigmentosa9 to 70 percent in elderly symptomatic patients with systemic mastocytosis and no skin lesions.12 The role of periodic surveillance is uncertain, but it may be useful to obtain a complete blood count regularly."

http://www.aafp.org/afp/990600ap/3047.html

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Lisa on 07/03/11 at 09:48:38

Hi Cccc,

I've got some news for you which you will find very encouraging and I hope it helps you a lot.

First of all, let me say this so that you understand a bit of why I can be so insistant.

Since I have been through this carcinoid scare and since many masto patients go this way, I learned through my carcinoid search some very hard and humbling lessons. Although I never thought I could do this, I found myself being led fully by my emotions, that of being scared witless, and had convinced myself purely by my symptoms that I had the carcinoid. I didn't want to be another statistic of where a patient had a false negative. So, I studied and the more I studied the more I was convinced and when my oncologist, who is still my support, told me he was strongly convinced that I did not have the carcinoid, I had a hard time believing him. I wanted it FULLY ruled out, not have a "strongly convinced". So he asked for more testing, which unfortunately here in Brazil we couldn't find - it's just too rare to ask for this exam and the commercial labs don't have the resources. So, he kept talking with colleagues asking about. In the meanwhile, my angiologist had to put me through an angiogram which is a CT with contrast. I had realized I was reacting to contrast and so we called in an anesthesiologist and I premedicated for 3 days with the common anti-allergy meds. I was doing okay before the exam but when the anesthesiologist starting checking the crash cart right in front of me it hit me what could go wrong and it began triggering me. No, I didn't go into any kind of a crisis, but I was horribly flushed and when we did the exam, immediately upon injection of the contrast I lost all consciousness and my pressure shot up to 220/110! The anesthesiologist had trouble waking me back up! Well, my angiologist and the anesthesiologist left me there recuperating from the exam and went their ways and about 5 minutes after they left I fainted all over again and this time nobody could get me out of it! I could vaguely hear them trying to wake me but I just could not respond - it was like they were far away and I was untouchable, even though I could feel people touching me and could even recognize the voice of my husband calling me. I stayed in this situation for 3 straight hours! They tried calling back my doctor and the anesthesiologist but couldn't get a hold of them and so I was kept in the ER under observation. It totally freaked us out! I kept reacting for an entire week after this and my angiologist had to put me on prednisone to deal with the remainder of the reacting the contrast had triggered.

With this my oncologist gave up! He sent me on to the highest authorities in Brazil (he's #3 in Brazil) Yet these guys were even more baffled and since they had never heard of such reactions and since all of my exams came back totally clean for any kind of cancer (and I was searched for not just carcinoid but NETs too) we knew it was my hysterectomy which brought the reacting up, these oncologists diagnosed me with "Hysteria" and since they saw how much I understood about the tumors they gave a slightly veiled accusation of Munchausens! They said my doctors suggested this after some of my symptoms popped up and from there I studied the disease and developed the rest! My gyno about had a cow! He was incensed to say the least, for he was the doctor who fully ruled out any and all emotional involvement for a gyno KNOWS WOMEN and they know when a woman's allowed her emotions to get the best of her with a hysterectomy! He was ready to have at those clowns for how stupid and presumptuous they were!

The error of both these oncologists, that of my own doctor and that of these "highest authorities" is that neither of them had any clue as to what masto can do! To them, as well as to the vast majority of doctors, it's impossible to have hypertension at the same time as anaphylaxis or vasoplegia. MASTO DOES BOTH! Masto is a disease that BREAKS RULES OF MEDICINE time and time again! This is another reason why doctors have such difficulty understanding our symptoms for they can't recognize it when the disease is doing a weird thing such as this.

Yet, once I found a doctor who was willing to take a look in the autoimmune area, this is when my tests began showing alterations. Up until this point NOBODY had looked for anything other than cancer and since I don't have cancer, my tests came back totally clean -thank God!

With this tremendous experience and the hard lessons I learned from it, I promised myself that I would NOT presume anything about my case if I didn't have some kind of PROOF or if I didn't have DOCTOR CONFIRMATION!!

So, in understanding this, Cccc, I am now going to tell you what I've learned.

Since I seem to be one of the queens of rare, KNOWING that rare things do indeed happen, I'm not one to close my mind to it! This situation of yours, the idea of your using an epi all the while having a carcinoid had my hair standing on end and it fully frightens me just thinking of the danger it could present to you. AS it is, not all masto patients can or should use an epi, for it's very strong medication and our hearts can't always handle it. My doctors have only used it once and that was during my open heart surgery! They are scared to death to due to this hypertension - it goes against all their training! They feel that they are going to kill me with it and yet now that the surgeons used norepinephrine during my surgery (it's stronger than just plain epinephrine), they're not freaking so badly and since my heart's good and strong, they're less freaked. Yet, knowing what I know about epi and carcinoid, it has seriously concerned me as to your situation and your insistance of having MCAD.

So, because I am NO DOCTOR and yet because of my wish to help patients avoid some of the grief and suffering I've encountered and because I've learned so much, I try to do what I can to help other patients. So, based on these things, for MY OWN peace of mind, I wrote to two doctors. I did not use your name nor did I go into great detail, but I asked their opinions as to whether it was indeed possible, that of a carcinoid patient who could have MCAD.

Dr. Norton Greenberger, the gastroenterologist expert in mastocytosis wrote to me the following answer:

date Sun, Jul 3, 2011 at 11:05 AM
subject RE: A question please
mailed-by partners.org
11:05 AM (6 hours ago)

many patients have benign gastrointestinal carcinoids throughout the GI tract.However, If flushing is present and cannot be explained by other diagnoses i.e. mast cell related disorder, then CARCINOID SYNDROME NEEDS TO BE EXCLUDED by appropriate tests, both urine and blood. So MCAD and benign ( not functioning ) carcinoids can co exist.
Dr. G

I am still waiting upon the other expert, an authority in Carcinoids as to his/her opinion. If and when I get a reply, I will post it here.

So, Ccc, I hope this gives to you the amount of encouragement you are needing to continue pursuing your answers. However, on the other side, it has given me understanding as well as peace of mind.

Now, before closing this note I would like to suggest two things to you. As I told you, I feel that Dr. Greenberger, being such an expert in masto is going to be the doctor you need to see if you are going to get someone to take you seriously. This answer of his shows that his mind is fully open to this possibility and if you are going to find help and support, this is your man. Please contact him, Ccc and see if he will see you.

The other thing is this, please, please, wait before using the epi-pen. Dr. Greenberger's comment of having put in caps that the carcinoid syndrome needs to be excluded shows to you how very important this is. He put the caps, not me. If you are showing flushing and the such, this indicates a carcinoid mestastize in your case and may not be masto. This is another reason why I strongly suggest this man for he's going to fully appreciate the danger an epi will pose you as well as the clinical challenge you present to diagnosing masto!

Ccc, some of us have NO CHOICE - we MUST see the authorities. Since you already working with the Boston doctors, you are a blink away from seeing Dr. Greenberger and thus Dr. Akin or Dr. Castells. If Dr. Greenberger thinks you've got MCAD, he will personally back you and work at getting Dr. Akin or Dr. Castells to help you!

So, there you go, DOCTOR CONFIRMATION and with this you and I both have peace of mind!

I hope this helps you as much as it has helped me Ccc!!! :)

Lisa

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by juliegee on 07/03/11 at 10:32:06

My heart goes out to you, Ccc. I just wanted to throw something out there. I read somewhere on this thread that a patients can NOT have MCAD and a carcinoid. I'm sure that is commonly true. However, so many of us defy the odds. I DO know of a patient with confirmed mastocytosis & carcinoid tumors on her ovaries so those 2 DXes can co-exist.

I am intrigued by your Dx of EDS. Who suggested that many EDS patients have masto? I have found that to be true, but haven't read that anywhere in the medical literature. I also have a connective tissue disorder, like EDS, and MCAD. I have met many like us.

Hope you're getting answers and reassurance-

Julie

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Lisa on 07/03/11 at 10:44:09

Julie,

It was most likely me who said that carcinoid and masto can't be possible. I don't believe I said it so definitively, but if I did the I STAND CORRECTED and I'm more than willing to admit it!!! It's a very, very rare thing and it's something that should be published for this is why Cccc has trouble with doctors believing her and listening to her! They just won't consider it due to how very rare this can be. But I won't be one who will ever say it's impossible and I won't be standing so strongly in the future. However, Dr. Greenberger's answer does show that the right thing and important thing to do is to full rule out the carcinoid syndrome before moving on to masto and that's due to how dangerous the carcinoid is!

Like I said to Cccc, the fact of the other syndromes of the connective tissues, etc, is what made me say, masto does fit in with this and that the carcinoid was the wild card here. But now that Dr. Greenberger has given us an opinion, perhaps it's just a parallel situation like mine of having the aortic aneurysms. Masto doesn't cause aneurysms, but that doesn't mean that it can't have a role in them since masto is known to be involved in vascular health.

Masto doesn't cause a carcinoid tumor, but obviously that doesn't mean the two can't exist as comorbid disease.

Yet I do think that the fact that you both have these connective tissue sitautions is important and who knows if we can't get these Harvard doctors to consider a study on this?!

Lisa

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Lisa on 07/05/11 at 16:01:52

Another doctor's opinion!

I wrote to Dr. Richard Warner for his opinion on this subject. This is his reply to me:

date Tue, Jul 5, 2011 at 7:32 PM
subject RE: A question please
mailed-by mountsinai.org
signed-by mountsinai.org
hide details 7:32 PM (4 hours ago)

I have never seen or read of the concurrence of Carcinoid syndrome and MCD in a patient although mast cells do have the ability to produce small amounts of serotonin. I suppose that it could be possible but the odds are astronomical against both diseases in the same person.
Best wishes,
RRPW

Richard R. P. Warner, MD

Professor of Medicine

Mount Sinai School of Medicine

5 East 98th St

New York, NY 10029-6574

Phone: 212-241-4299

Fax: 212-426-5099

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by juliegee on 07/06/11 at 10:35:44

That has to be reassuring for Ccc!

It's certainly not a good combo. The woman I know, with systemic mastocytosis and carcinoid tumors, is having a very hard time treating the cancer because of the mastocytosis. She is working to find a balance between fighting the cancer & not triggering her mast cells. Every day is a struggle. She wants to find effective treatment, but sadly, her docs seem to be giving up and want her to receive palliative care through hospice. Very sad :-(

Despite what the top docs say- there ARE rare birds among us- as you know only too well, Lisa ;)

Julie

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Lisa on 07/06/11 at 11:27:34

Julie,

Tell this friend of yours that she MUST TALK WITH CASTELLS! Dr. Castells is a pioneer in desensitization therapy in that patients who are undergoing rejection of chemo are finding new hope with her for when they can't handle their chemo anymore the treatment stops but with Dr. Castells, she's been able to turn the situation around for those patients. She's the ONLY PERSON, I would think who would know exactly how to turn the situation around for your friend.

Tell your friend to write directly to Dr. Castells, explaining her case and what is happening with her chemo and her masto. Tell her to ask Dr. Castells if she can help her and then wait to see what she has to say.

I'll bet you anything she'll write back for she KNOWS that would be the kind of case where there's no where else to run.

Lisa

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by juliegee on 07/06/11 at 12:59:31

Great suggestion. I have just passed along your idea to her via E-mail. She is in the Chicago area & certainly not well enough to travel, but perhaps Dr. Castells can consult with her doctors there.

Thanks-

Julie

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Riverwn on 07/06/11 at 17:00:03

<---just waving hello to Julie :) Hope you are feeling ok!!
hugs
Ramona

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Ccc on 07/07/11 at 16:19:39

Lisa, I can't be explicit enough here. MY DOCTORS SAY I DON'T HAVE CARCINOID SYNDROME.

So when you pose these questions to these MDs, it is NOT the real story. I'm the one who says I feel warmth and a slight warmth in my face. They do not feel this is carcinoid syndrome as it is not connected with other symptoms and not sever enough.

I am a person with vulnerability to have a second cancer in my life because I was previously treated aggressively in '94 and familial issues. What I have, which most people with a stomach carcinoid DON'T have, is an autoimmune atrophic gastritis, which if left untreated leads to pernicious anemia and carcinoid tumors (due to low acid physiology).

So, this is why I post here. If I pursue treatment for the carcinoids without getting an assessment on the potential for Mast Cell issues, I could run into trouble because of what is involved with surveillance.

For instance, the GI folks are overlooking something that happened in the excision of the carcinoids. I needed to have deeper anesthesia because Versid and Fentenyl was at maximum during previous procedures ...because I woke up in pain so they needed to increase it. This time an anesthesiologist was present to give propofol. He decided to intubate me .... at some point. Anyway, I dud become conscious yet still paralyzed because I couldn't breath. My lungs were filled will mucous or fluid.. or something. I began to panic cuz they had the mask on me.... like they thought I could breath.... and I was suffocating. My lungs began to move on their own ... A sort of squeezing to breath... And expelled whatever it was. Then , I still couldn't breath (there was more) and I was then able to move my right hand to grab the mask haphazardly, and expell again. Then, I became unconscious again. Now, where the heck did this mucous come from? I've never had that in previous operations. Was this a reaction to anesthesia? My lungs and the muscles were in so much pain for the next couple days. I had inflammation and mucous that I got under control with asthma treatment. I've had surgery before but never had this problem.

So when it comes to checking out this carcinoid issue. I don't see where it makes sense to not go forth in tandem so that my MDs who are working on the carcinoid have support from someone who has seen me and has expertise in Mast Cell. Shen I have these issues with procedures, or anesthetize (dental stuff has been weird) and have all the allergies that I have, well I say someone should be on board seeing me through the carcinoid assessment and surveillance planning.

Julie, I'm sorry I can't find the publication about mast cell and EDS. But if you go to prettyill.com , the woman there is working with one of the MDs who is proposing this (Dr. Francomano). Also, there is a genetic counselor collecting info about either connective tissue disorders and/or EDS patients with MC. The later is called the Elephant Project. You can find it on EDNF.org

Lisa, have you ever been screened by a geneticist for a connective tissue disorder? Most MDs do not know how to assess or screen for this, particularly in adults. Dr. Francomano (Baltimore) is the one to see on that. Again, EDNF.org. They've got a conference coming up the end of this month in Baltimore.

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Lisa on 07/07/11 at 17:14:07

Cccc, I'm sorry if you get the impression of my picking at you as regards to this subject. I'm not. And when I wrote to these doctors, who both give different opinions, I wrote to them about that of carcionoids and masto. I posted their opinions for they are valid opinions. We have other patients here who came in on your question here and posted their opinions and questions so it's very truthfully NOT pointed directly at you. And, believe me when I say, I'm one patient who is not against the theory that rare does indeed happen, especially when Dr. Basson told me that in my case lightening has struck twice. The more we learn about my case, the more unusual and rare it shows itself to be. I'm a Lisazilla whether I like it or not. But as I explained, I've learned not to trust my own judgement on things. I'm not a doctor and I've not the capacity to make calls about these medical issues all on my own. I go to doctors for confirmation - either my own doctors or various doctors who have an area of specialty within that subject. This is why I wrote to both Dr. Greenberger and Dr. Warner. I've talked recently with Dr. Warner about carcinoids but have never spoken before with Dr. Greenberger. Yet their opinions as recognized experts in these areas are valid opinions and I think that this is a very valid question you've raised here. My efforts to get their opinions isn't just for one patient's benefit but for all of us.

In the past, Cccc I've spoken with Dr. Metcalfe about differentiating between Carcinoid and Masto in regards to serotonin and histamine testing for he has a paper that was released in 2008 specifically studying the serotonin levels on masto patients and it has been a real help for other masto patients as well.

So, please don't feel as though I'm pinpointing you Cccc, I'm very honestly not. It's an important subject you've raised, very, very important for too many patients find themselves, like me, having to rule out carcinoid and since they are very difficult tumors to diagnose, it's important that patients be aware so that they don't jump to conclusions and go off on their own without their doctors leading the way. If your doctors are of the opinion you say they are, then you have no need to be concerned! Prior to Dr. Greenberger's opinion, which thus forced me to have to change my own, I was concerned for you for you made it seem as though you had made conclusions as to masto being the issue here and this is why I suggested that you see either one of these experts so that you had a better chance of finding the truth. How wonderful for you that your doctors are involved in this and I'm sure it helps to relieve you of much of the burden.

Wishing you all the best Ccc!!

Lisa

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Ccc on 07/13/11 at 11:10:39

Lisa, today I saw a specialist in carcinoid who works under the person who writes the treatment guidelines (2010) for stomach carcinoids. She assessed me and said I unequivocally DO NOT have carcinoid syndrome.

I did write you a PM though. Perhaps you did not see it. I'm asking that you request permission before asking an opinion for me. I had the contacts already and when I called NY, the person recognized me because of your contact/ communication with them. So please, I appreciate your good intention but please respect my privacy.

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by DeborahW, Founder on 07/13/11 at 11:23:26

Please take all personal issues to a private message level, and report any problems to me privately. I do not want any responses posted here regarding the matter at hand. If I have to keep intervening on appropriate vs inappropriate discussions, I will start banning people from the forum.

Thank you everyone for your cooperation with my policies.

Title: Re: EDSIII/Carcinoid/Allergic to the 21st century/and....
Post by Lisa on 07/13/11 at 12:13:19

Hi Cccc,

Just so you know, on this thread here we have another patient who is also the process of a carcinoid investigation. My queries with Dr. Warner and with Dr. Greenberger did not apply to your case specifically and since I do not know who your doctors are nor even your name I could not have mentioned you specifically. Therefore there is no need to ask for your permission since it was not specifically regarding you.

I wrote to both of these excellent Doctors raising a generalized concern of differentiating between carcinoid and mastocytosis patients. We have had other carcinoid patients on here in the past and they will continue coming here in the future since the syndromes that both diseases produce present challenges to our doctors to tell us apart. I am not the first masto patient to undergo a carcinoid syndrome investigation nor will I be the last. This is part of the diagnostic processes for any masto patient who shows only systemic activity and does not have any cutaneous lesions. For the majority of us, our doctors use the process of elimination to finally find out diagnoses. This is a normal process and you are not the only one to undergo this.

So, please do not feel that I have singled you out here. My questions were well founded and for the benefit of other present patients here as well as for future patients I sought the opinion of these two authorities.

Lisa