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.

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

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

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

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

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.

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.