Discussions that mention gleevec

Rare Disorders board


Hi there, I have an update on my bone marrow bx. John, and the other posters here I hope are feeling ok. The Bone Marrow Aspirate smears and sections:
1. A few foci of small lymphoid aggregrates with CD117 and Mast Cell Tryptase positive cells present consistent with systemic mastocytosis
2. Normocellular Bone Marrow with active Hematopoiesis in all three cell lines.

3. Increase of Iron Stores ???????

4. flow Cytometric Analysis: No evidence of monoclonality

5. Cytogenetic Study (in progress)

I know what you mean now John with the Tryptase Asssay :rolleyes: about one year ago (I finally found my lab paper) at that time it read, 23.8 H
Ref. Range: <11.5 this was the tryptase serum only. Today my results read:26.4 H <15.8 I guess labs have different range conclusions. So my Dr. told me about a new med (Gleevec) I take 400mg. daily,and once a week have my blood drawn. So in a month he will have an idea of what is going on. This is a Tyrosine Kinase inhibitor (targeted therapy) The Dr. said he has some of his patients on it for other reasons: CML/GIST Trying to stop any progression. I know there is not a cure at this time, but there are many treatments, and staying away from triggers, and wow there are soooooo many triggers. I have found I can't have sugar now it makes me feel almost sick it's as if I can't even digest it. Thats ok I don't need the sugar anyway. I so like to have a glass of wine once in a while, but it is on the trigger list so I drink slow and one glass that is it. I have noticed the drier wines don't cause me any problems. I might have a glass once or twice a month. I am staying positive, but I really thought my tmep was cutaneous only. I think it still hasn't really hit me or I feel kind of numb at this point. So much to read about; if not informed or educated on this masto disease we could very well not get the correct care. I should have been on something else besides antihistimes a year ago. Those Dr's. never mentioned seeing a hematologist. The bone marrow bx. is what got things going in the right direction. A RARE/ORPHAN DISEASE HMMMMMMMMMMMMMM. ANY INPUT HERE WOULD BE GREAT!!!! I'm just blown away right now. I cried on the way home from follow up/results, but it's strange..... I was not too surprised.??????? I hope the humidity isin't too bad where you are. I don't even want to go outside. :eek: Hope you are having good days!!!!!! :) I guess the Dr. also wants me to have another test to make sure intestines etc. are ok. I got the appt. moved up I want to get this one over with for sure. Systemic............info please. :)
Hi Kathy, :wave:

Hey need to comment on something. If your still using products with hormones such as cortisone I would stop until a bone density and evaluations are made on you. Maybe ask your doc. Especially inhalers too. Unfortunately the better ones have hormones but I’m only allowed Albuterol because it has none. I bet anything if you search “bone loss cortisone” You will find way too much. That would be for normal people and not masto patients too, so you can figure out what I’m saying here.

I went to the doc and had most my lab tests back. Now my tryptase is up to 117. :eek: They are waiting for a few other tests to come back and all are exploring the possibility of at least trying Gleevec for me too now. I am running short on time right now. I will talk to you both later.

God Bless
John
Hey Kathy,

On that Gleevec, I see that they should still have you come in and be monitored on that right? At least that’s what I have read on it. I think it can throw some of your blood counts off a bit at least until you get used to it like what I’m on. I’m sorry but I forgot. Have they put you on any anti-histamine yet? They had me try two more additional ones. Singulair has helped my breathing so much over the past few days. I have much more lung capacity for sure. Also have you had any results from CAT scans or anything else yet? I’m just interested in your treatment strategy and what meds they are also using too.

As for the creams. I seem to remember you mentioning leg pains and getting skin hives in the same place. See where I am going with this? Not sure how deep penetrating the cream is but this masto thing is not too good on the bones either. Benadryl is probably fine though. I was on tablets for a wile when they started me on my injections to counter the reactions. So far the side effects from chemo could also be from this disease. Weakness and tired is something we had before the meds so who knows? My biggest problem and most serious side effect is causing depression now sometimes. That is the first serious question EVERY doc asks when they see me. I am normally happy and optimistic my whole life. There are some moments on this interferon that are rough but I manage to pull myself out when I start feeling it. I am glad you sound like your handling the treatments pretty well so far.

I am keeping you and your family in my prayers as well.

Sincerely
John
John, thanks for the reply!!!! I think I have the thing you talk of regarding; a burning electric type zap across back area. I think you mentioned that a while back???? I have been getting the stinging/burning type pain across my shoulder blades for about three years, but assumed it was one of my discs the report stated I had something going on at certain spinal levels. I didn't think to much of it, but now my spine/bone health is at the top of my list. I may call ahead of time to ask if my follow up can be more than ten min. hmmmm ????? I will have so many questions. I want to know how this gleevec is metabolized etc... what I can take as far as maybe having more energy etc.... This may sound strange but before I was offically dx. I had been walking more, going to gym etc.. Long story short LOL....I was told about this serum that helps your muscles to not fatigue so soon during work out. I tried some and I really did notice a difference. I don't know if it will help now that I am on gleevec med, but I got it at GNC. It's nautural, and it doesn't have stimulants etc... something about the lactic acid and it helping in that area. It's not cheap and when I purchased it I had asked alot of questions first. Muscle something......I will ask my doctor if I can safely take that and get his input on it. I am sorry the interferon ? makes you fatigued I can kind of relate; even if I am not on the same therapy as you. Has it been suggested to you to add any thing to your therapy that would help (even a little) as far as energy is concerned???? I'm just wondering if anything besides the big guns of medication can be taken to help us feel better (of course without interacting badly)!!!!! I hope you feel better, and you have a nice day/weekend!!!!! Nice "long story short huh" LOL oh yeah I seen the movie Four Brothers last night, and I thought it was very good. It is a little violent, but very good anyway. I don't know which types of movies you like, but if you havn't already seen it; you should try and go!!! It took my mind off things for a while anyway:)

Take it easy
Kathy
Kathy,

I tell you what. You are so right!!! You do sound like you may be experiencing some bone problems. I would defiantly take it seriously. I will sincerely pray for you that they never get as aggressive as mine. Optimistically and statistically for you those chances are slim, as I have said before. Take it from me. I’m sure Chris will agree as well. You want to protect that back and spinal cord as one top priority. It is also a double edge sword in my case. The “theme of my own personal treatment” seems to be “control it and contain it to the bones.” Bone mass can at least be re grown and some other things cannot. Yet Vertebrae are important for many reasons. Mainly because they protect and contain the spinal cord too. You see with me personally, it was important that I was tested 100% for everything and every organ that could possibly be affected. Afterwards evaluations for treatments and a specific “theme for treatment” or battle plan or whatever you want to call it. I would not take one drug or do one thing until all the information was in and we all had the same plan or “theme for treatment.”

Another thing I hate about this is all the rules changing for us too. If I were you I would go to the masto society web site and type Gleevec in their search engine and see what you come up with too if you haven’t yet. I am finally getting thru to some of my docs that all the rules are off when it comes to people like us on meds designed and studied for people with completely different illnesses. Interferon too was and is used primarily for only some Cancers and mainly Hepatitis. Now I have recently tried to start a thread in that section asking people who take it about their symptoms. Problem is their symptoms were and are different than ours in the first place. They have a virus in their blood and possibly livers and we don’t. They also don’t take anti-histamines and we don’t take a couple other drugs they do. I’m afraid all the studies from the drug companies too are right out the window for us. It’s like trying to find a way to use your car as a boat that will also cut your grass too or something. I find the best place to find what specifically happens to us in relation to what we have including meds is from others like us and from the masto society web site.

I have to go for now. I hope this helps.

God bless
John

P.S. Thanks for the advice on the movie. I find it funny how I was thinking about going to one the other day too but all there was playing was Willie Wonka and the penguin movie near me. LOL!!! I will watch for that one.