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Systemic Mastocytosis

jr7449
1 Recommendation

I was diagnosed with systemic mastocytosis about 6 months ago. This was after years of seeing doctors for my skin, which has been worsening with red/brown blotches that swell into hives when having an itching attack. My entire torso is covered, my upper arms, the top of my thighs, and splotches here and there, everywhere. Finally, one doctor asked me to participate in a group viewing for a diagnosis. At least 50 doctors saw me, one or two at a time, and all said 'Oh, you poor thing!'
I was then sent to an oncologist for a bone marrow test, which confirmed that I have systemic mastocytosis. Now what?!
He put me on Gleevac until my face and ankles swelled up terribly. He took me off. Again, now what?!

Explore topics in this discussion:

Diverticulitis Claritin Acid reflux Back pain Allegra Kidney stones Vertigo Thalidomide Benadryl Mastocytosis Stress Advil Leukemia Sweating Anemia Rashes Pain Thalomid Diarrhea Hydroxyzine

32 replies

momanek

Hello all.
I'm approaching this from a different viewpoint. My husband has masto. He began to have anaphlylactic episodes in 1997, was transported twice by ambulance to the hospital. After a couple of hours, his symptoms begin to subside, he goes into a shock where he shakes, his blood pressure stabilizes, he throws up, has diarrhea, and then crashes. We have learned the triggers, the big ones being stress and alcohol. He avoids the alcohol completely. Occasionally he will have an episode and we have no idea what triggered it. He has urticaria, but not the kind that itches and makes a wheal. I found masto after a lot of research. He finally had a skin biopsy in 2008 and TMEP (a type of masto, telangancia macular eruptus pertans) was the diagnosis. His internist has not suggested a bone marrow at this point, but he does have systemic symptoms. He had an endoscopy in 2008 and they confirmed he had increased mast cells in his intestines. He takes ranitidene, but is unable to take claritin or benadryl. He does not feel good when he takes them.
He is currently dealing with such an array of symptoms, vertigo ( which the doc says is not from the masto) rapid heart rate, bone and back pain. He is on a second round of antibiotics for diverticulitis because the doctor "thinks" that is what is causing his stomach pain. We never know from one day to the next what sympton is going to surface. It is the most frustrating thing to not be able to help him or find someone who can help him. He is a pipefitter and works very hard, but I would love to see him go on disability, but it's not recognized by the SSA yet. Maybe some day.
Anyway, if anyone has any of these other symptoms, vertigo, rapid heart rate and back pain, I would like to know.
I wish all of you the best and I am very sorry that you are suffering from this unknown disease.

jr7449

Hello to all
I have returned from my 2nd treatment at M.D. Anderson. Returning for Cycle 3 on the 18th. So far so good. I am noticing a bit of a different gut pain, lower.
Not as much diarrehea, but a lot of spaciness, and headaches. About the same on the bone pain. And gas, gas, gas!
Also, fatigue. The itching attacks have also cut way back, as well as some of the spots. My stomach is looking much better. My heart goes out to each and every one of you. It's a difficult disease and impossible to understand.
Hopefully, this will be the answer. At worse, another step to a cure.
Hang in there one and all, keep smiling and take good care.

masto4acure

Hi SuzyBear. It can be so frightening in the beginning, especially the uncertainty of it all. But hang in there, it does get easier to deal w/. You will learn coping skills and things along the way that help you manage your disease and the emotional impact it has on you. I know it's especially scary when you're hearing others talk about how bad their situations are, but just remember, we all progress differently w/ this disease, and some much slower than others, so I encourage you not to look too far ahead and worry about all the "what if's," for they may never come. And even if they do, you will find a way to get through them. This disease brings out incredible strength in people, and you will soon see that in yourself as well, if you haven't already. Just keep reaching out to others, build up your network of support, be your own best advocate, get a team of doctors that are supportive and willing to work alongside you to attain the best treatment plan for you, and just take things one day at a time:) I wish you a great day...hang in there! Hugs, Julia

SuzyBear

I was just diagnosed with Masto this summer. I have spots. Mostly on my upper legs and some on my torso. The doctors have said it will probably spread. Thankfully mine do not itch to much, only if I get to hot. I am so at a lost with this disease, still trying to figure it out. Scared.

SuzyBear

Poetessa

Thanks so much to everyone for the support, I was just so bummed yesterday, I sort of sounded like a big baby but some days I just get overwhelmed but yes, it can always be worse and I do have so much to be thankful for!! I gave myself a swift kick in the butt and I'm feeling mentally better today!
This is such a roller coaster isn't it?? And not sure about everyone else but people are starting to speak to me like I'm 90, my brain fog is so bad I can't remember anything..."Leslie...rem-em-ber we went out for din-ner last night....rem-ember???" LOL I feel just brain dead but it also must be from all the meds too!!

I just want to wish everyone a wonderful pain free, symptom free day!!, I know I'm counting my blessings today and they are many!!!
Hugs all around!!
Leslie

Poetessa

Hi Bessie, I feel you and I go way back on here, you were my first friend ages ago. I firmly believe that so much of this is mental attitude and the will to fight. I will admit, sometimes my energy level does drop and I just don't feel like going to battle but we have to. You have such a strong and brave attitude my dear, 24 months is not an option, we are going to be blabbing for years to come!! I am so happy that the new drug isn't showing any side effects and you are tolerating it, that is great news!! I know what you mean about wondering why this is all happening, it is difficult to understand but as they say, everything happens for a reason, I truly believe that. One my best friends insists that somehow I'm going to figure out the cure for this!! hahaha I have trouble figuring out what to wear in the morning never mine curing a disease!! LOL
But I sometimes think that public awareness of this might just help many who might have it and not know. Being a filmmaker and a writer I've been thinking about how I can use my skills to get the word out... a documentary could be one idea... I am always thinking of things to do! Though my films are usually gushy love stories and reincarnation!!
Now as for your sister-in-law.... OMG!!! I swear, I haven't met her but I really want to haul off and deck her one in the chops on your behalf!!! What is wrong with some people?? These people can't imagine what it's like to be sick or in pain or just scared and in need of some support!! I do know some of those types as we've discussed but I am doing spring cleaning and they all get tossed out with the trash!! I just can't put up with stupidity anymore, I guess you are sort of stuck with your sister-in-law though. What does your husband say? Thank God for him, he sounds great!!
I actually got a puppy for companionship and moral support... she is just adorable!!! She sticks by me on good days and bad... sometimes I think animals are just so much kinder than most humans!!
Thank you for your kind words Bessie, I want you to know that if ever you need some support or just a friendly understanding voice, you can write or call me, I can send you my number if you wish. We are all in this together, no one should feel isolated!!
Sending big hugs, healing energy and light your way and hoping this new drug does the trick and makes you feel better!!! You are so strong!!!
Love,
Leslie

besg

Hey Leslie, so sorry you are in such a bad place right now. I have gone thru one round of "Chemo" with a newer drug called Decitibine. I take an antinausea drug 1/2 hr before and then it takes about an hour to run it in. No side effects so far but I have only had one week of it so..... I was off 3 weeks with blood work every Monday. Those really haven't showed much except my Platelets are up from where they were (100 and now 218!!) And my Hemoglobin is hanging right in there just below normal. I start my second round of "Chemo" on Monday.
I understand the feeling great and then all of the sudden you have to either sit down or lay down or else you fall down. Makes no sense. No real change but only had one round so can't expect to much, other than I don't itch as bad as I was. I " " chemo as my Dr said it is and it isn't chemo. I don't know. I have a brother-in-law who is an Orthopedic Surgeon at the Mayo Clinic in Jacksonville FL and he checked with some of his buddies down there and what little experiance they have had with this Decitibine has been good so that was encouraging. I still feel like my days are numbered tho. I looked up the prognosis for this lovely new development Chronic Myleomonocytic Leukemia (CML) and they say 24 months!! I am saying now wait a DAMN minute here! I don't like that at all. Guess I am just somehow going to have to beat the odds. I do have the stomach issues and such but not to the degree you seem to be dealing with. I am so sorry. And not the bone pain either although I have been having some issues with a thightness in my chest making breathing a bit tenious at times. I just have to sit down and say ok, you can get thru this. Think and breath, think and breath. So far it gets better and I am ok again.
I am so sorry about your personal issues, that really has to suck. People just do not understand, nor do some of them want to. My one sister-in-law, I swear she has a calender marking off the days till I am gone. Seriously. She can't wait I am sure. Guess I'll just have to show her she will be waiting a long time!!
Some times I just get so angry, not at God, but just at this stupid disease. I look at the bag of drugs and say "Ok, get in there and do your thing and get rid of this nasty crap!!" And then sometimes I am just scared as all get out and bawl for a while. But that doesn't help either except tire me out. So I just keep plugging away and remember I am very blessed with a supportive family (especially my husband-God bless him) and I can still go to work and function, so I can't feel to sorry for myself. I really am so sorry about what you are going thru and pray things get better for you.
Wishing you more good days than bad. Take care of you
Bessie Gisch
g.gisch@mchsi.com

jr7449

Leslie,
I am so sorry you are not doing well. This condition sure can take its toll on one. Hopefully, this new treatment I am on will find a solution. Honestly, so far I feel no different than before.
Hang in there. As we all know, it could always be worse.
My prayers and thoughts are with you, as well as I am sure, everyones'.
Jan

masto4acure

Hi Leslie. So sorry you're going through such a difficult time right now. My thoughts and prayers are with you. Keep us posted on how you're doing. Big Hugs, Julia

Poetessa

Hello everyone, I just read all your posts and some of you I've chatted with and some this is the first time. I too have S.M. and I am on the border of aggressive. In March my bone marrow was at 70% having lost 20% in just one year... just curious how much bone marrow we can survive on? My anemia was getting worse and worse with every work up last winter and I was in and out of the ER with severe upper abdominal pain all the time, the scan showed my spleen and pancreas were enlarged but the liver was hanging in there. They told me at NIH that if my hemaglobin didn't come back up, it was at 10 but it fell in 2 months from 12 something to 11 to 10 steadily, that I would need chemo and I had 2 months to pull up my hemaglobin socks or else it was chemo for me. I was so excited when I did my blood work and I was at 12.8 in May!!!... then 12.3 the next time, now 11.2 and I am just feeling horrible now, the bone pain is horrible. I feel like I have been kicked in the chest every time I get up for hours. I am having trouble taking deep breaths, all my joints are aching and sore to the touch, I am totally ditzy and sound like a moron lately and just blame it all on brain fog/freeze/total shut down!! LOL I went into anaphylactic shock last night after looking at my dinner, well I took one bit in a restaurant and it was my first time out in so long. I have a terrible time eating lately, all food makes me feel sick and my gastro flares up all the time lately and I know you all understand what that entails and I keep getting these bouts of fatigue that are so strange, one minute I'm fine, the next minute I feel like I am sinking into a full blown coma and have to lie down or I'll fall down???? What the heck is that??? That is new
I would love to hear from those who are in the aggressive stage and who have gone through chemo to see how that went. I have heard some concerning statistics and with us being so allergic to everything, I can't even have a bone scan without nearly dying from the contrast dye!!! Can we actually tolerate chemo? I just got back my blood work last night so I am pretty bummed, my liver is functioning though so that was the good news. Oh and I have masses on both my ovaries and now my cycle is all messed up and showing new and scary symptoms so off to get an ultra sound asap.... and someone here said that SM causes ovarian tumors???? Crap!!! I'm not having a good day... I am trying to remain as up beat and positive as possible, trying to pretend I'm fine for my daughter who's staying with me right now and not an easy teen (going through a divorce so she's been really difficult... the joys) and trying to push myself not sit on the couch like a toad all day in my jammies. But I have to say, I'm feeling pretty bummed and concerned. It's just a comfort to know that I'm not alone anymore in this crazy nightmare anymore. I am wishing all of you symptom free days a head!! Oh and not sure who said they are in the hospital right now but if you need some support...I know I sound really strong right now, I'm just a pillar of strength LOL but e-mail me anytime if you are going nuts and need someone to talk to and that goes for anyone else too!!
No one understands what I'm going through, they still think I am the drama queen or they ignore me all together which is a nice touch!!! Help!!!! Ready to sob!!
leslie@lesliecottle.com
Blessings to all!
Leslie

jr7449

Hello fellow S.M. friends
I have just returned from M.D. Anderson after my first treatment of Obatoclax IV - 30 mg. 3 days, 3 hours each. I will be returning every 2 weeks for same treatment. I have been on Gastrocrom for about 2 weeks. This is a clinical trial under the guideance of Dr. Vrostovsek in Houston. There have been no changes in my condition yet. I have had either an itching attack or severe pain followed by diarrehea at least once a day. I return on Aug. 4th for blood work and second session of Obatoclax. We can only wait and see what happens.
Good luck to all of us!

SM_30

Hi, I am 30 and I was diagnosed last year with Systemic Masto. I am so happy to find this group of people. I am continually searching the net for people to identify with.

My email is babeeling@gmail.com and I would love to hear from one of you! I live in the midwest and have never met anyone with Masto.

I am currently on the standard H1 and H2 blockers and a full dose of Gastrocrom. I've had two attacks in the last two months (off Gastrcrom) and the last one I felt like I was dying. But I'm still here....and I'm back on Gastrcrom and feeling much better! We're trying to conceive our second child. I'm sure most of you think I'm crazy for trying that, but I've been cleared by all my docs....

I would love to hear from someone else with SM!

Good luck to everyone...

hollyhocks1231

yes, i have what you have..been on interferon for almost 2 years. i think it is keeping me from getting any worse. it's called pegysis...i also take hydroxyurea, 2 a day and the injection weekly. you get used to it.

i believe the masto has caused everything i've gotten in the last 10 yrs. gall bladder removal (1 lg stone), kidney stones, parathyroidectomy, (this month), fibromyalgia,(severe), osteoperosis, acid reflux, and probably even the ovarian tumor.

it all began w/burning fingers, then mysterious rashes came and went, then fatigue, headaches, body pain, stiffness, until i had to quit my job and go on disability.

i've learned to stay away from stress as much as possible, and rest a lot. take my meds and see my oncologist often. just gotta take care of yourself. so you're really not alone....and we understand what you're feeling.

not fun, i know. but there are people that have much worse. like some of our brave soldiers, losing life and limbs for us. so we have to be brave too. it'l be alright. learn all you can and be patient with people who just don't "get it". we are unique, that's for sure. i'd love to know how i got it. lol.

jr7449

I will be participating in a clinical trial on June 19th an M.D. Anderson in Houston. I will need to take all of the tests again, including bone marrow biopsy.
Will let you all know how it turns out.

MTPJunior

Some of the symptons that happen to me.

Headaches, stomache pain, right sided numbness, sweating, calf pain, lower back pain.

I have this nasty disease in my bone marrow and skin.
3 leasions in my brain that MAY also be the masto.

MTPJunior

I also have been diagnosed with Systemic Mastocytosis.
I have MANY different symptons that seem to get worse each day.

If anyone would like to talk about this and learn more from each other, please feel free to contact me at martyjr108@hotmail.com

Maybe together we can help the doctors HELP US.

Stay strong and never give up,

Muggebrs

I take zyzol 5mg for my hives works great, have u tried that

Gman206

Yes, gut pain can be unbearable at times and I have dumping 5 days a week. When I start Algonot Plus the first month was incredible it allieviated my dumping and intestinal pain. It is worth a try... and doesn't interfere with my H1 and H2''s. I tried gastrocrom a few time at 6 month length and found it didn't help me, but a lot of people find it a miracle worker. The inventor of Algonot has spoken many times at National Convention for TMS. Hope this helps... Has anyone done lite chem...? My Dr wants to try this next, since I am not a candidate for Gleevec. Not sure what lite chemo means??? Appreciate any imput... thank you Gilbert

cynclaire

I do not consider myself severe with gut pain or bone pain. I do have gut flair ups with cramping and diarrhea and my bones ache but I am so fortunate that advil works at this time for the aches and chills. I really feel badly for those of you that are severe and are finding no relief. My prayers are with you. My lungs are affected by cold air and seems to react to blowing air on me. My car airconditioner, going from warm air into cold air and in Texas every inside venue is cold. Asthmalike symptoms. I use an inhaler. Last December was my worst flair for over a week. I felt like I couldn't leave the house. Conditions were just right and I just couldn't breathe. That's how my lungs react.

jr7449

I also experience severe stomach pain, mostly after eating, but at times for no reason. It is totally debilitating, breaking into a cold sweat, close to passing out and at times followed by diarehea. My bones hurt at times, usually knifelike intermittent pain. I go to the oncologist today and will ask. I am also trying to get into a clinical trial in hopes of finding some relief.
I imagine it also effects the lungs somehow. It is hard for me to know because unfortunatly I am a smoker.

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