From Carcinoid Cancer To Mastocytosis

I'm 23 and my story begins from when I was in high school. I honestly have no idea how I managed to graduate and actually go to college. I started getting sick my freshman year of high school and it only progressed as I got older. I would have strep so bad I'd be hospitalized. When I was 19 I became seriously ill at college and was told I probably wouldn't make it off the operating table. Wen the biopsies came back they revealed I had Carcinoid cancer. A very rare cancer found in my appendix. After being given compazine a drug that was supposed to help with nausea I had a dystonic drug reaction. Since then I have had stress induced seizures which medicine cannot help. I became so ill I was sent back home to live in Texas with my family. I went from dr to dr trying to find answers to why I had flushing, terrible periods, itching to the point of harming myself and other various issues associated with Mastocytosis. My journey took me to the Mayo Clinic where I had every inch of my body scanned and looked at. At the very end of my three week stay I got a phone call from the allergist who I was unable to see due to being forced home. She said she had bad news but it wasn't for sure so I needed to be further evaluated. She called it Mastocytosis. Ummm what the heck is that?! I went to my PCP who sent me to an allergist. Mind you this has all taken place since aug of 2012. My tryptase kept coming back normal so the oncologist refused to perform a bone marrow biopsy without further evaluation. I guess the blood tests and urine tests being done four times over months finally gave him a reason to do one since they all came back positive every single time except for the tryptase. Last week I had a skin biopsy which we thought wouldn't show anything since I really have no signs on my skin. However yesterday I got a call that confirmed mastocytosis on my skin as well. Tuesday I go in to talk with the oncologist about the biopsy. This is finally the final stage in my diagnosis. I'm so releaved its finally coming to a conclusion! I am however scared to death of what they will tell me and what my treatment will be. I guess ill find out within the month......
Misslucero89 Misslucero89
22-25, F
8 Responses Jan 23, 2013

I had a carcinoid appendix in '97. Negative for celiac, but my daughter and I are gluten intolerant, so going gluten free 10 years ago helped a lot. I believe I'm masto, I believe that was what my grandma had. Been hunting for a doc who will listen to me. I'm on most of the masto meds already b/c I came down with asthma or something like it a few years ago. Singulair is very helpful! BTW, I had that same bad reaction to Compazine in '84. I can't take most psych meds, but I've learned that most harm me more than help except on short term occasions. Do everything you can to get quality sleep. Watch the foods you eat, limit your chemical exposure, be cautious with meds. Get your vitamin levels tested - I believe zinc, magnesium & copper are involved. Hormones make this worse - so anything that affects hormone levels will affect this. Hang in there. Keep fighting. I'm 47.

I can see why (slap) I would be irritated also. Wow Missy sorry your having all these problems. Had a cousin who for years had health issues, they finally found it was the mercury in the fillings causing the problems. Took over a decade to find it and fix it.
I think you need to post a story of Coca in the I love siamese group :-)

Thank you! And glad your cousin is better!!! I will have to write about my little Cocoa in the siamese groups haha

I didn't mean sleep the drs lol I meant slap

Yes I went to Rochester Mayo. When I went I was told at the time by drs that I had celiac disease crohns, epilepsy, cancer, heart problems, interstitial cystitis, ulcerative colitis, severe depression, anxiety, and well I can't even remember what all at this point haha. Mayo confirmed my carcinoid cancer was gone. I didn't have crohns. I had ulcerative colitis and lymphocytic colitis. Celiac was also ruled out. I do have tachycardia which affectes my heart. No epilepsy found but stress reduced seizures to the point of almost dying several times. They diagnosed me with PTSD and upped my medication for both depression and anxiety. They last informed me of possible mastocytosis which is now my main concern and objective. The oncologist thinks I don't have mastocytosis because my tryptase always comes back normal. I heard that your tryptase will only show high if you literally just had an episode as I call them. That's what mayo told me anyway. My allergist finally convinced this oncologist that I really need the bone marrow biopsy because every other test besides the tryptase has come out positive numerous times. The problem for me is that the very rare cancer I have Carcinoid, has almost the exact same symptoms as mastocytosis. The mayo told me if I have mastocytosis also I would be the first recorded case in history to have had both. What really ****** me off and hurts is that I've always known there was something wrong with me since it started but since the drs didn't expect any rare cancers or diseases I was told I was lying. I can't even tell you the number of times I've been in the hospital or drs office and get told I needed a psychiatrist because I was making up my symptoms. I refused to believe them and when they took my appendix out guess what they found?! Carcinoid cancer?! A few years later when I was about 21 the same symptoms started getting worse again and this time new ones like scratching myself to bleeding point and severe abdominal pain. They kept telling me it was just crohns and blah blah blah. I decided they were all full of **** and went to the mayo. That's where they finally caught the mastocytosis thank The Lord!!! I want to go back and sleep every psychologist and dr who said I was making this all up. Anyway I should leave it at that for now. The meds I'm currently on are B12 injections, pentassa, protonix, klonopin, pristiq, seasonique, symax, hydracodon, metformin, xyzal, fluctonase, urelle, elmiron, D3 and calcium.

Hi Sephardgirl16
When I first got Masto and still did not know what it was, yet was very ill. I was vomiting with certain smells, i.e. gas fumes and exhaust , windex, mould, leaves off trees, damp, heat,cold, sex, certain foods, wine. I was scared to move..... I live in Kingston Ontario Canada and every Doctor I think saw me, I had blood work+++++, bone biopsy, skin biopsies. No one knew. So I started asking people if they knew of Doctors who specialized in rare diseases, I gave my number to the lady at the health food store ands visited her almost everyday. She finally had a couple names. One was a Homopathic Dr. When I went to see him I was so full of yeast it was even in my eyes and everywhere that had a opening. He gave me Nystatin pills, lozenges,and to do an elimination diet. I did it , very exhausting and I couldn't work. I eventually would add foods very slowly back into my diet after 1 month taking a cleansing product from him. I kept records of what I ate, how I felt. If it bothered me or made me anaphlaxic I would write it down. If didn't bother me I would write it down that I could eat it. This took me almost 3 months, it was worth it I started feeling better, not cured but better. By then the health food store lady had a name of a Doctor in Ottawa who dealt in rare diseases. Soon as she came in the room and saw my skin , she said you have Mastocytosis with Uticaria Pigmatosis , I started crying +++. She hooked me up with a Hemotoligist and he checks every 6 months to make sure my liver spleen etc. have not enlarged or I get leukaemia which is common in stage #3. I take Reactine, Pantoloc( acid reflux and heartburn are part of it) Tylenol at bed for pain which feels like a constant burn inside you. Somedays hardly notice, other days almost knock you out. You learn to have a good pain tolerance as you have no other choice if you want to live and do things in your life. Now all this happened in my early Thirties. Yet when I was younger 13 I had allergic reaction after going under for an operation. ( which is common with Masto) allergic reaction to morphine. At 17 passed out while on birth control, right after taking it and always felt ++ tired and ill. Allergies to condoms. Allergies to sulpha drug while had a urinary tract infection. Great difficulties when I got pregnant ( vomited everyday, weak and many other problems) While giving birth almost died, hemorrhaged and in hospital 2 weeks after. Had surgery on my mouth later on and took Tylenol with codine and had an allergic reaction. So I believe I had Masto since I was young. Good Luck and I hoped this helped a little. :)

I am so sorry to hear you are so sick....I understand....dx yesterday...sick since childhood but last 7 months I have been in a kind of 'hell and horror show' of my own....nausea, diarrhea, cramping, unable to eat....fatigue, rashes....etc. My doc prescribed cromolyn sodium oral.....I am praying my insurance company will pay at least part of it....and I am praying it will tamp down my day long GI reactions to the mast cells that won't quit expressing themselves. Please keep me posted as to how you are getting along. My thoughts and prayers go out to you. Best

Hi sorry to hear you have Mastocytosis. I was Dx about 10 yrs ago with it. It took 3 years for someone diagnose me. I also have urticaria pigmatosis which is the rash, hive like spots that come with a reaction, yet never go away once you get them. Read everything you can about it. Carry a copy with you for other health professionals. When I was DX in Canada they told me it was very rare and material was limited. The Mayo clinic is the only place that specializes in this disease. You are lucky to have gone there. I am what they call a stage 2, I believe now I am a stage 3 for I now have Cancer in my Kidney, bones and questionable in my liver and lung. I learned to adjust my life to fit this disease and have had a good 10 years with my limited knowledge. I have traveled, worked and done many things. It sucks right now as I am just trying to adjust to this new news. Good luck to you Misslucero89. If I can help, please send me a msg. :)

Mayo clinic in Rochester? I was dx yesterday...horribly ill x 7 months with the flushing, diarrhea.....pain everywhere...thought I was dying...may very well be. My doc is prescribing gastrocrom.....cromolyn sodium orally to help suppress the mast cell response....please share any protocol you have tried....did you go to Mayo? did they help you? Tx so much for any info....will pray for a better outcome for you. Best

The cure for cancer is DCA, you have to find someone to buy it off of. doctors wont prescribe it for cancer because the medical faculty has not written on it's results on humans for curing cancer. It is a cure though. you have to get it. it's FDA approved because it can be used to treat other medical problems.

What is DCA? Is it used anywhere in the world at this time? Any trials, clinical studies etc.? Just recently dx with systemic mastocytosis....pretty sick most days....struggling...any info would be appreciated. Tx