Discussions that mention gleevec

Rare Disorders board


Janilee,

I don't know if your still here but I have malignant systemic mastocytosis. There is no blood test to find out if you have masto. They do a skin punch biopsy or a bone marrow biopsy. I have been thru all the biopsies and was even on chemo (Gleevec) until it damaged my liver. Life is hell with masto so I pray you don't have it. Let me know if you have any specific questions.

Wendy



QUOTE=Janilee;2559997]Hi, I hope it's ok to enter a question here. I'm a newbee. I have almost all of the symptoms of mastocytosis but blood tests were negitive. Doc said it was the best blood test available. Doc want's me to get skin biop next time I have bruises. A rhuem. tested me for several autoimmune diseases, which were all neg. except ANA was 1:20, he thinks I have mastocytosis. I had never heard of this before. He sent me to a immunologist. Immunologist was the one who ran the masto test.

Can someone have masto and still have negitive blood tests?

Thank you for any help you may have. This is so frustating. My symptoms are getting worse over the years and all the Doctors tell me is that my symptoms are iidiopathic, hives, anaphalaxix, bruises, blisters, etc.

Thank you again :wave:
Chriscann,

If you were diagnosed thru biopsy and its positive you have masto. I started with UP/TMEP when the spots just started show up. 4 years later I had a brain tumor and the masto turned systemic. I have had several bone marrow biopsies (bmb). All positive for atypical mast cells positive w/cd2 and cd25 which according to my docs at MD Anderson in Houston shows they are malignant. If you have found a doc who know about masto your lucky and stick with him. I was on chemo 2 yrs ago (Gleevec) and it didn't work it just caused liver damage. You need to be on H1 and H2 blockers, gastrocrom (if you can take it, I can't, I have every adverse effect from that), lots of benedryl etc if you symptoms are severe. I am on lots of meds and heavy pain meds. I think the only reason they do blood work is to check the tryptase. I also have MRI's, full body bone scans, ultra sounds of liver, and upper and lower GI tests every year or so. They do this mainly to check the progression even though it doesn't change the treatment.

Wendy
Hi,

One thing I forgot to mention is the importance of you starting your own medical file. Whenever you have tests done get a copy of the all the results. Either from the doc or the lab. I keep copies of everything, I even pick up my CT scans and MRI films and keep them. It makes it much easier if you have to go to another doc so things don't go missing if docs are passing around info. Also it makes it easy if you have to go to the ER. If your doc doesn't know much about mastocytosis check who your providers are from your insurance list. Then call the hematologists on the list and ask them if they how to treat masto. My regular doc here in town is an Allergy/Immunology doc. Surprisingly he has 4 other masto patients but he says they are not as advanced as me. Although one of his masto's has a problem with bones breaking but her bone density is normal. That is another problem with masto. He had sent one of patient of his to MD Anderson in Houston but they found his mast cells were normal not malignant/Atypical like mine so he didn't get into the Gleevec Clinical trial like I did. However the Gleevec didn't work for me and I have refused to try Super Gleevec or Ontak chemo they offered since they wouln't give me any specifics on liver toxicity. I can't wait to see how your tryptase turns out. As I said before mine is only high right after an attack. Are you on and H2 blocker? Pepcid, Zantac anything like that? Since you are on a H1 blocker the h2 blocker works with it and really helps. Do you get brain fog? Its like you can't think or remember and get really confused? I get that all the time. I am on Lexapro (anti depressant) its suppose to help with brain fog but it doesn't really help but for that but I also get really cranky like the worst PMS and it helps for that. Masto's have a lot of neurological symptoms. Cranky, brain fog, fatigue, confusion etc. But if you only have the skin form of masto you may not get all these other symptoms. I use to go the Mastocytosis Society web site and they have a chat line thing but it seems most people there have no diagnosis and have tons of allergies and that is not what masto is. Some of the people on line there tried to tell me it sounded like mine was an idolent form of systemic masto even though my oncologist said my mast cells are malignant. Hate to say but I go with what my doc tells me. The people were trying to tell me its too rare for masto to turn malignant. So I stopped going to that site. It was crazy. Well I better go hope your doing ok.

Wendy
Gina,

Sorry I forgot to mention, I don't have any allergies but I have SM. So having allergies doesn't mean you have masto. Also the docs I have are 1. Allergy/immunology doc and also Oncologist/Hemotologist doc. I have been on Gleevec (chemo) and it didn't do anything to help just damaged my liver.

Good Luck
Wendy
Chriscann: Your allergist was actually the correct one in insisting that you go to NIH for a BMB. There are only a handful of centers in the US that can do it correctly (have the knowledge and correct lab). You don't want to go through having a BMB that will not give you correct results. My BMB did not hurt, but it is likely because I was at one of those centers. The main reason to have a BMB is if you feel your doctor's treatment for you might change (meaning that they find the c-kit mutation and thus you are a candidate for gleevec). Many don't bother having one if they are doing fine on their current meds.

While my BMB was easy, I wouldn't have one done anywhere but one the major centers, such as NIH, Mayo, & Univ of Mich Hospital. I have heard of plenty of people whose BMBs were not so painless as mine....The places I named above are familiar with masto and thus know what reactions to look for (during the procedure) in the event that the patient has a problem.

You might want to reconsider your plans and talk to your allergist more for his reasoning. When I had my BMB, I made a little fun trip out of it with my husband. We had a nice time...stopped for the BMB....and went back to enjoying ourselves that afternoon. I had to travel about 6 hrs to get there. So we went up the night before, stayed 2 nights, and drove home the 3rd day.

Just a suggestion to think about...