Cml Gleevec

My name is Alicia from Spain. My 39 years old husband was CML diagnosed April 04. He's on 400 mg. Gleevec and has complete cytogenetic remission. I'd like to contact anyone in similar conditions or having taken gleevec for long but nothing else before.
At the same time I'd like to talk with someone who already went under bone marrow transplant with a compatible sibling donor. My husband has one perfect match donor brother.
Thanks, prayers and good luck to everyone reading this. Suffering makes people very near to each other, sometimes...My best feelings across the ocean. Alicia.

My name is jeff and I am 43 years old. I was diagnosed with cml about 3 years ago. I have been on gleevec since then. I was started on 400 mg and stayed on that for about 2 1/2 years. Then the docs started seeing a molecular increase and increased the dose to 600 mg. That worked for a while, but then the numbers started to go up again. I am now on 800 mg and the numbers are still rising. The funny thing is that the even though the numbers increase, they are still in the molecular range. (which from what I understand is so low as not to be seen with cytogenic tests)I feel good. Unfortunately, or fortunately, I am going to get a stem cell transplant at the end of this month. My sister is a match so I feel very lucky. I will let you know how that goes. God bless you. jeff

Hi,

My name is Nycole and I was diagnosed Oct. 2004. I am currently on Gleevec and I am having a lot of stomach problems. I don't hear of this that often and I am wondering if your husband has had any stomach problems.

Hello, dear Jeff. Sorry I didn't answer before. I'm thinking about you often. I pray for you and hope you're doing well. Whenever you can, tell me how are things. I suppose that, by the moment, you are not strong enough.
My husband keeps going with Gleevec (15 months now).
Are you married? Can I support your wife or email you directly?
Be sure of my prayers. May God be with you. Alicia.

Hello, dear Nycole. My husband has also stomach problems, he takes a protective every 12 hours. In Spain it's called Omeprazol. He has had nausea, vomiting, diarrhoea, pain...
He's on Gleevec 400 since June 04 (Now 15 months.) In te beggining he had no protective, 9 months went by and he had to take one protective every 24 hours, 5 months later his stomach got worse and now he takes two protectives a day. This kind of medicicine doesn't do any harm and helps a lot.
I wonder if his stomach goes bad because of Gleevec or because of the anxiety of being ill.
Let me know about you. I wish you all the best. Alicia.

Hello Alicia,
My name is Cindy and my 10 year old daughter,Lauren, was diagnosed with CML in Sept. 2005 and has been on 400mg of Gleevec since then. She takes Zofran to help with stomach problems, but seem to have alot of aching bones and swolen ankles. Does your husband suffer from any other symptoms? Did the doctors mention a marrow trans? My daughter's docs want her to have one and the risks are high, yet I don't know much about Gleevec long term.

I was diagnosed with CML about two weeks ago. The doctor put me on 600 MG of Gleevec. The first five days I felt like I had indigestion. I did take some over the counter Pepcid and it did help. I read an article that said you need to make sure it is taken two hour after or before the Gleevec dose. I also think it is wise to ask your doctor about this. The reason my CML was discovered was because at times I had blurry vision when I was looking into the distance.My eye doctor suggested that maybe I should have my blood tested for diabetes. Alas, we all know the end of this story.
Mary

 

On 7/19/2005 Alispain wrote:

My name is Alicia from Spain. My 39 years old husband was CML diagnosed April 04. He's on 400 mg. Gleevec and has complete cytogenetic remission. I'd like to contact anyone in similar conditions or having taken gleevec for long but nothing else before. At the same time I'd like to talk with someone who already went under bone marrow transplant with a compatible sibling donor. My husband has one perfect match donor brother. Thanks, prayers and good luck to everyone reading this. Suffering makes people very near to each other, sometimes...My best feelings across the ocean. Alicia.

Hi Alicia, I have been on 600 mg of Gleevec since '01 and doing just fine. It surely is a miracle pill. My Oncologists tell me that there are also two new drugs for CML should Gleevec stop working. There are so many alternatives before a bone marrow transplant is necessary. I wish your husband well!!! Never give up!!

 

On 5/20/2006 Mary Catherine wrote:

I was diagnosed with CML about two weeks ago. The doctor put me on 600 MG of Gleevec. The first five days I felt like I had indigestion. I did take some over the counter Pepcid and it did help. I read an article that said you need to make sure it is taken two hour after or before the Gleevec dose. I also think it is wise to ask your doctor about this. The reason my CML was discovered was because at times I had blurry vision when I was looking into the distance.My eye doctor suggested that maybe I should have my blood tested for diabetes. Alas, we all know the end of this story. Mary

Mary, I have been on 600mg of Gleevec since 2001 and doing just fine and still kickin' Have your doctors told you to eat a full meal with your pills and to drink lots of water? This can help with your indigestion. This is surely a miracle pill and this is not the "end of your story" you will do just fine on Gleevec with very lttle side effects. Here I am, living proof 7 years later. There's also 2 new drugs on the market should Gleevec ever stop working. I wish you well!!  Chas..

 

On 1/9/2006 Cyndship wrote:

Hello Alicia, My name is Cindy and my 10 year old daughter,Lauren, was diagnosed with CML in Sept. 2005 and has been on 400mg of Gleevec since then. She takes Zofran to help with stomach problems, but seem to have alot of aching bones and swolen ankles. Does your husband suffer from any other symptoms? Did the doctors mention a marrow trans? My daughter's docs want her to have one and the risks are high, yet I don't know much about Gleevec long term.

Long term survival on Gleevec seems great!! I have been on 600mg for 7 years and still kickin' Taking the pills with a full meal and lots of water help with stomach problems. Swollen ankles is one of the very few side effects.My Oncologists tell me that there are now 2 more drugs for CML should Gleevec ever stop working. So many options before a bone marrow transplant may be necessary. I wish Lauren well!!!