Cml

My husband was diagnosed 6 months ago with CML.
He is doing well on Gleevec. Looking for anyone who has any info. Teddy

My husband is 38 and this came as a real shock to us. His doctors are very positive, but not knowing enough about Gleevec is scary.

A bone marrow was suggested, but not immediateley because he is doing well.

Jennifer L

My husband is in similar conditions, 39 years old, diagnosed with CML in April 04 and taking Gleevec 400 since June04, he's on complete cytogenetic remission and doing quite well.
He has a perfect match sibling donor but doesn't want to undergo BMT and I feel very sad about it because we don't no much about Gleevec.
I live in the south of Spain. My name is Alicia and we have to boys 9 and 11 years old, I hope everything is OK for you.

Dear Alicia,

Thanks for your response. We seem to have almost
the exact same situation. I felt like I was reading my own story.
My husband is do to have a bone marrow test in August to determine his remission statis. It is my understanding that there are three different phases and he is in the second so far. If his tests in August come back clean then he is in full remission. (it's confusing to me).
We are very hopeful and are praying for the best.
I would like to keep in touch and know more about your situation.

Jen

Dear Jen,
Happy to hear from you. Be sure that Teddy's tests will come out perfectly. He's doing well in a very short time. That has to give you a lot of hope.
There are three stages: hematologic remission (the blood counts are OK), molecular remission and cytogenetic remission. When the three are OK, yous husband will be in full remission. This means that any doctor would say he's ill through a normal test, but unfortunatelly he will keep his illness, hidden inside. Later on, every few months, tests will be repeated, blood tests, marrow tests to assure you he keeps in full remission. Hopefully this will go on for years. If Gleevec fails, they would try 600 or even 800 mg, or begin to think about a bone marrow transplant, which, although dangerous, could be the only possible cure for the illness.
Does he have any brother or sister perfect match donor? If not I wouldn't think and just trust on Gleevec, and pray.
I'll be here for help and support. I read a lot and feel well informed. My best feelings, hopes and prayers for Teddy's good health. Alicia.

Hi Alicia, Thanks for all your info. We just found out today that my husband has reached cytogenetic remission. We are very happy and hope for the best for the future.
He does have an exact match in one brother and an almost exact match in another. So we feel very lucky.

Your information was helpfull, We get overwhelmed with all the Doctor talk. We love his Doctor, but they sometimes forget how to talk to us in our terms you know?
Please keep in touch. I just get nervous using this computer and not knowing who I am really talking to.
Again, thanks for your thoughts and be assured you are also in ours. Jen

Hello, Jen. I hope everything is OK. My husband is doing well. His stomach needs protection everyday, his muscles are rather stiff and he needs to do exercise often.
I wonder if you have children, where do you live, what are your jobs. I would like to email directly with you but I don't know how to do it.
Please, let me know how is Teddy feeling. Alicia.

Jenn & Alicia:

I have been reading your posts and found comfort in them.

My husband was diagnosed in June 03 with ALL at age 35. He went through 2 years of chemo and is in remission from ALL. Since he finished treatment in Nov. 05 he has been feeling wonderful, strong and so positive.

His whites have been slightly elevated since then. Our Dr. decided she would do a special blood test, as she suspected he may have an "underlying" blood disorder.

Just last week the Dr informend us that he was still in remission from ALL, but she discovered he actually had had CML this entire time. How did she not know this???

The Dr. said he always had the CML and it turned Accute (blast) and matastisized and or presented itself as ALL. We are sick that he has been untreated for CML for the last 3 years.

This was a huge shock to us. So, Andy is on Gleevec now and we will see how it works for him.

So far, he feels great. We are now scheduling consultations at Fred Hutchinson in Seattle and MD Anderson in Texas for more direction.

My husband has 3 blood siblings, none of which are a perfect match (we did the HLA testing 2 years ago, just in case) We will test the cord blood from our baby that was born in the middle of this nighmare( just after he stared chemo for ALL!) to see if she is a match.

If not, we go to the bone marrow doner list and pray...if that is the rout we need to take.

Has anyone heard of CML matastising into another form of Leukemia? How was it treated?

Any feedback and thoughts would be greatly appreciated. Apologies for my type-o's ...cant find spell check!

Thank you
Beth73

Hi Beth,

I know it's been a long time since your last entry, but I would be interested on how things are with you. Hope all is going well. My husband continues to do well on Gleevec.

Jen