DeborahW, Founder
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(Archived from lisathuler - original forum) As to the Carcinoid crisis.....and anaphylaxis. You are right, Ramona, anaphylaxis is not a symptom of carcinoid, but the carcinoid crisis and anaphylaxis are almost indistinguishable to us patients - we don't know the difference between them. Their flush is more intense and longer lasting and perhaps that's one way the doctors can tell the difference, but they go through almost the same symptoms, diarrhea, abdominal pain, brochospams with wheezing, and flushing with hyper or hypotension. And even with ourselves going into anaphylaxis - we don't have that certainty that we're really in anaphylaxis and not the carcinoid crisis or even some other kind of crisis until we've got something to prove that it is what it is or a doctor who identifies it for us. This is the danger we partients are in when we have our huge reactions in that until we have some kind of proof, unless a doctor can identify it for us, it's extremely hard to know exactly what it is! Take reflux, for example - it's known to mimic a heart attack!.
You see, I've made these mistakes! I can remember going through 3 and 4 hour long crises in the ER and not getting any kind of medication but a sedative or a muscle spasm med due to the abdominal pain! They would not give me anything because they didn't know what it was. They thought it was panic attack and God only knows what else. When we didn't know what the suspicions were it was horribly frustrating because we were frightened as to what was happening. Nobody recognized it as anaphylaxis cause I was hypertensive. They honestly thought it was emotional! Then once the suspicion for carcinoid and masto were raised, I didn't understand why they didn't give me anything, but I didn't know how dangerous it was that they didn't jump on top of the suspicions! I was in a state until my oncologist gave me Allegra and this cut my reactions! Well, it would have served for both masto and carcinoid due to the fact that I was having pseudoallergic reactions. When I had the severe reaction to the contrast, I wasn't given anything but a sedative to bring my pressure down! Yet I remained flushed for hours and in syncope, but this syncope was not a typical reaction for carcinoid and this should have tipped somebody off, but it didn't. Then, later, when my oncologist sent us to the highest authorities in this disease, the oncologist saw me go through a strong flare. He saw the way I reacted - no broncospasm, the flush was not as intense, and I just didn't have the same reaction that a carcinoid patient has. He KNEW that it was not a carcinoid. He didn't know it was masto, but he KNEW carcinoids and he KNEW I didn't have it! This is why I say, either you've got to have some proof of your disease or you've got to have a doctor identify it for you.
As to the antihistamines and the use of them for carcinoid patients. They DO go through many of the very same triggers we do - heat, cold, stress, emotions, foods, medicines and contrast! And it is at this time that the antihistamines work for them! My oncologist told me today that they have the very same pseudo-allergic reactions and this is why he prescribed Allegra for me so that when I would react to these things, that I had a means to counteract it. Yet, whether or not those allergic reactions will run into the crisis event as easily as a masto patient's reactions will lead into their crisis event of anaphylaxis I don't know. It may take them more reacting to get into trouble with it. And this may have to do with the fact that mast cells are a great deal more abundant.
An example of this is by the Test to provoke the flush. Before they found the biochemical markers for masto and carcinoid they used to have the patients drink a glass of red wine and then give the patient epinephrine to see if the flush would disappear. If the flush disappeared, it was a masto patient, if the reaction went into a crisis, that was the carcinoid patient! They also used to do the same thing with an epinephrine drip - the patient who flushed with the epinephrine was the carcinoid patient - no flush was the masto patient! Why? Because epinephrine for the carcinoid patient is DEADLY! For us, it saves our lives!
As to the working with both patients in comparing the two crises and reactions, one big difference between the two is this: Carcinoid is a malignant neoplasm, but it is concentrated in the form of a solid mass. Mastocytosis is also a neoplasm (I'm not talking about MCAS - but systemic mastocytosis), but it is considered a BENIGN neoplasm in the majority of cases. Yet it is not in the form of a solid mass, but aggregates in clumps and stays in a celular form without making a "lump" (except in the form of the mastocytoma). This makes a very big difference in how the two diseases function. For example, when surgeons must remove the carcinoid tumor, they must be extremely careful not to touch the tumor itself or it will release it's mediators and put the patient into the carcinoid crisis. Yet, they can touch anywhere else and it won't trigger them! The quantity and strength of their mediator release is tremendous. Anesthestics is also an issue for them, but if they are taking the appropriate medicines then they'll be protected. Well, with masto patients the youve got a dual problem in dealing with the neoplasm. It is diffuse throughout the entire body, it's not in a solid, lump form so that you can locate it and remove it. Yet, there are also focal points of where they are concentrated and if you touch them, you'll trigger them. This is why the literature will say that surgeons must be extremely careful in disturbing the intestines for they've got a ton of mast cells in there. And even with MCAS, we may or may not have an invasion of our tissues with mast cells, however, our mast cells throughout our body are extremely sensitive, or we are overwhelmed with a proliferation of them and this is what triggers the huge systemic reacations. If a patient has way too many mast cells in their pancreas and the doctors decide to remove it, they must be careful to premedicate the patient, and they must be extremely careful in touching the pancreas for manipulating it will cause the mast cells to degranulate en mass. So, working with the two patient groups are different due to the source of their mediators - one is located in specific spots only and limited to that place only. If it's a carcinoid in the ovary, then it's ONLY in the ovary and it will not mestastise to the liver - it is in the intestines, then it's only in the intestine but it mestastizes to the liver making it incurable. But that will not mestatise anywhere else (as far as I know) - this tumor is not aggressive like many other tumors and so if you can remove the ovary and that portion of the intestine before it mestastized, the patient is 100% cured. This is not the case for masto - remember, masto is a blood related disorder and it's more like any other blood disorder in that it's throughout the entire body.
The carcinoid syndrome is not the same as the carcinoid crisis. The syndrome is what they call the constellation of symptoms. They could have done the same with masto and called it the Mastocyte syndrome or something fancy like that, but they didn't and perhaps that may be due to the fact that this involved the mast cell itself whereas the name carcinoid is the type of tumor. This is why the carcinoid is a subgroup of Neuroendocrine tumors or "NETs", it's because the tumor is made up of endocrine cells - the hormones come from the cells, just as they were programmed to do. How and why it forms, I really don't know.
The carcinoid crisis is similar to anaphylaxis in that it's is basically made up of the same symptoms of the syndrome, but only intensified to the point that you must intervene or the patient could die. Why and where the name anaphylaxis came from, I don't know, but it could be called a Hystamine crisis if they wanted to get technical about it. But funny thing is with research these days, it may not be so much the histamine which is the issue, it could be the Platelet Activating Factor - PAF that's the bad guy here - supposedly a little goes a long way. Yet, because of the different causes of these crises, it is essential that the difference is know for again, you must deal with them individually and with the approprate medications.
As to the food reactions. Guess what, I was reading today that with the carcinoid they must avoid the "amines" within foods. They've got to have a low histamine diet and even more foods than we are limited to! And, depending upon the masto patient, there are foods that some of us can eat that others of us can not. I don't think it works that way, they all may have to avoid the same kinds of foods. Why? Well, when I spoke with Nancy Gould a little while ago she feels that the reason why we are all so different is due to our specific genetic makeup. I do'nt think that carcinoid patients have this "luxury" or "frustration" and that they can get away with cheating on a chocolate bar on a "good" day. I don't think they have the luxury of a "good" day! I think their disease is more consistant for them. But again, I'm not certain because I've not spoken with a carcinoid patient about these things.
I know some of you are wondering , why does Lisa keep talking about these carcinoids?! This is a masto site! Yes, you all are right, this IS a masto site, but for those of us who don't have any spots to give us away, we are patients who are in a real fix and in a great deal of danger. Some of us are fortunate, something about our case made our doctors think Masto and not Carcinoid, or in their random testing, something came up that showed them the direction! I wonder if I had gone to the hematologist who asked for the 24hr urine histamines test first, before I went to the oncologist if life wouldn't have been a great deal easier and I would have avoided a lot of grief. But it didn't work out that way and I went through the carcinoid investigation first. Not everybody ends up having to go my route, but most of us do have our doctors at least doing the 5-HIAA urine test just to check it out. But you must remember, like it or not, the carcinoid syndrome IS the Differencial Diagnosis for Systemic Mastocytosis. There are going to be patients, like me, who come onto a Masto website, trying to find out answers by listening and asking patients what they go through in order to see if they may be a masto patient instead of a carcinoid patient. I DID THIS! I spoke with patients on both sites as well as CU sites and IA sites. I still participate on an IA site! I gained a great deal of understanding and after that carcinoid was ruled out, it was my understanding of how masto worked that helped me make connections as to what I was reading and as to what had changed in my body. It's only right that we help other patients who are without spots try to understand it all and since I studied about carcinoid pretty intensely, I can't help but feel that it's very important when a patient has their doctors who are still trying to sort it all out not end up having us convince them as to which disease it could be. These tumors are considered the hardest of all tumors to diagnose! The authorities themselves will admit that there are cases that they just can not solve! Those researchers are as challenged by the carcinoid as the masto researchers are with our disease!
So, my friends, please be patient with me when I will sometimes run back to going over these things for new patients who don't yet have a diagnosis. We're all trying to help, but I think everyone would agree, it would be a horrendous thing if we were to unwittingly convince a patient that they are masto merely due to their description as to what they go through and then that patient should end up getting side-tracked. We all have the best of intentions and because we are only patients, we may end up doing more harm than good even with such good intentions..
I just want to err on the side of precaution! Someone's life could be in the balance and it's important that new patients who are totally systemic no spots at all, should know that there is this competition that must be seriously considered.
Lisa
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