Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Gleevec experiences? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1378330119 Message started by vicmjones on 09/04/13 at 10:28:39

Title: Gleevec experiences?
Post by vicmjones on 09/04/13 at 10:28:39

Has anyone tried Gleevec? Please tell me how it was and if it helped you. I just started on it today.

Title: Re: Gleevec experiences?
Post by Daffodil on 09/05/13 at 07:31:45

Hi

I have not tried it but hope to one day. I just wanted to wish you well and hope it helps your symptoms.

I know another member tried it recently but felt that perhaps their dosage was not enough. How much are you taking ?

Anne

Title: Re: Gleevec experiences?
Post by vicmjones on 09/08/13 at 11:23:41

Only 100 mg right now. I feel the same that maybe I need more. I feel fine on it (just a tiny bit of nausea and diarrhea). My flushing is substantially less (very noticeable to me) and I think I might have more energy. I would like to double my dose but need my docs permission.

Title: Re: Gleevec experiences?
Post by Irene Wilson on 09/09/13 at 00:54:14

I have known people do very well on this medication. The patients it has helped did not have the mutation. You have to be monitored closely while on it and have constant blood tests and checks at a hospital under a Specialist who has knowledge of treating patients with it.
Here is some information about it:
Imatinib (Gleevec) is reletively ineffective in the 816V mutation but can have activity with other KIT mutations or in patients with eosinophilia and mast cell proliferation who harbour the FIP1L1-PDGFRA mutation.
So far, researchers have found that C-kit cannot be targeted with Gleevec, a chemotherapy drug that was involved in several trials. What has been reported is that Gleevec appears not to target the hallmark C-kit mutations at Codon 816 However, it can target some other C-kit mutations based on some data and can help curb mediator release in some patients.
Side effects can include:
Low white blood cell count or low platelet count. Medicine may need to be stopped.
Risk of infection. Avoid people with infections, colds, or flu.
Feeling lightheaded, sleepy, having blurred vision, or a change in thinking clearly. Avoid driving, doing other tasks or activities that require you to be alert or have clear vision until you see how this medicine affects you.
Headache.
Nausea or vomiting. Small frequent meals, frequent mouth care, sucking hard, sugar-free candy, or chewing sugar-free gum may help.
Diarrhea.
Muscle pain.
Liver damage can rarely occur
Irena

Title: Re: Gleevec experiences?
Post by Daffodil on 09/09/13 at 03:14:59

Hi

I think it is good to start low and see how it works for you. I am pleased that so far all is well and you are seeing improvements. I am sure your doctor will increase the dose once he feels you are ready.

Anne

Title: Re: Gleevec experiences?
Post by vicmjones on 09/10/13 at 19:18:25

Thanks Irena and Anne. I am now noticing lots of bone pain which is not fun. That is making me worry that it won't work. I was so happy and thought I was really onto something. Now I am not so sure. I sure hope it will at least decrease the mast cells in my body.

Title: Re: Gleevec experiences?
Post by Joan on 09/11/13 at 17:27:25

Sometimes cells dying in large quantities can cause increased symptoms. It might take a little time to go away.

Title: Re: Gleevec experiences?
Post by Irene Wilson on 09/12/13 at 09:45:00

Please try and give it a good go. You will probably experience quite a lot of side effects in the beginning but these even out over time. It can take a few months for you to start feeling the benefits. As I said it works well for people who do not have the mutation
Some of the side effects can include feeling light headed, sleepy, blurred vision. headache, nausea or vomiting, diarrhea, muscle pain.
You have to call your health care provider if you have difficulty breathing, significant change in thinking clearly, swelling of your legs or stomach, severe headach, severe stomach pain, severe diarrhea, unusual bruising or bleeding. It will tell you all this on the information that came with the prescription.
It is very important to have regular blood tests. While on this treatment your white cell count can go very low. Irena

Title: Re: Gleevec experiences?
Post by vicmjones on 09/13/13 at 12:31:47

Thanks I am getting blood tests once a week. Now I am getting REALLY foggy thinking (but I was pretty darn fogged before so don't know if that is a substantial change) and the blurry vision. I am not going to give up for at least a month. Doc says we should know if it's working by then. :D

Thanks for the encouragement. I will try to think of all these symptoms as mast cells dying off!

Title: Re: Gleevec experiences?
Post by JohannaB on 09/23/13 at 10:08:15

Hi! I've been on Gleevec for nearly 3 years. It has completely changed my life. While I still have masto symptoms from time to time, without Gleevec I would be completely miserable.

I'm on 400 mg.

Title: Re: Gleevec experiences?
Post by vicmjones on 09/24/13 at 15:37:34

Johanna: How long before you noticed that you were better? Did you get increased "brain fog" at the beginning? I am upping my dose to 200mg today.

Title: Re: Gleevec experiences?
Post by JohannaB on 09/28/13 at 05:18:59

Brain fog is the first thing I noticed that disappeared. Before Gleevec, I never knew about brain fog only that I felt I was walking through a hazy world, but I hadn't done any research to look into it. For me, the symptoms started subsiding after about 3 weeks in. Suddenly the world became clear. Completely clear! I had NO idea how bad my brain fog was, and it was terrible for YEARS, until it went away. I do get brain fog time to time on Gleevec, but it usually lasts for a day and goes away. For me, that was the biggest change.

After about a month, my flushing decreased and all of my other symptoms. I still have issues, but they are more transient now with Gleevec.

Keep pecking away at it. I hope it'll work for you!