Chronic Myelogenous Leukemia (CML) Support Group
Chronic myelogenous leukemia affecst the balance of blood cells in the body, disrupting the normal balance. The cancer cells eventually begin to outnumber and push out the good cells, and could lead to anemia and easier bleeding/bruising. If you or a loved one is diagnosed with CML, this is the community to discuss your experience.
My partner was diagnosed with CML earlier this year.
I have been finding it really difficult but continuing with my studies was a way of getting my mind of things for a few hours during the day. However, we have recently been told that his treatment isn't responding how it should. They have informed us that the next steps taken will be a bone marrow transplant. I have experienced family members suffer from this illness but this time i feel it has really got the better of me. I am slowly but surely spiralling into depression. I cant sleep during the night and i and i constantly have knots in my stomach when ever my phone rings. I never used to be like this but i feel i am loosing control of myself. My mum advised me to take a gap year and under go counselling as she is very concerned of my mental state. however, I am in my second year of university and a full time student and don't have a job to fall back on.
I feel stuck in life and i'm really finding it hard to make any decision. I would love to of speak to my partner about this but i dont like adding any stress onto him?
I have been finding it really difficult but continuing with my studies was a way of getting my mind of things for a few hours during the day. However, we have recently been told that his treatment isn't responding how it should. They have informed us that the next steps taken will be a bone marrow transplant. I have experienced family members suffer from this illness but this time i feel it has really got the better of me. I am slowly but surely spiralling into depression. I cant sleep during the night and i and i constantly have knots in my stomach when ever my phone rings. I never used to be like this but i feel i am loosing control of myself. My mum advised me to take a gap year and under go counselling as she is very concerned of my mental state. however, I am in my second year of university and a full time student and don't have a job to fall back on.
I feel stuck in life and i'm really finding it hard to make any decision. I would love to of speak to my partner about this but i dont like adding any stress onto him?
If you check with the hospital where your husband is being treated there my be someone there for you to talk with.
I don't know what the history is of your husband - what stage he was diagnosed in, what TKIs he has tried. But a good site to visit is http://community.lls.org/community/bloodcancer/livingwith/cml/content?filterID=content~objecttype~objecttype[thread] for informtion on CML.
There is also a BMT site on the lls board where you can ask questions.
They also have a caregiver lounge where you can talk with other carers http://community.lls.org/community/bloodcancer/caregiverlounge
One suggestion I would make--if your partner has not been seeing a CML specialist, he should. General oncologists and hematologists can be great, but when there are issues with the treatment or responses aren't good, you need to see someone who works with CML everyday and preferably someone who's doing research. If you haven't seen a specialist, see one before deciding on a BMT. If you already have, please forgive me for butting in! I have been seeing a CML specialist at a research university every six months for several years and my regular onc is happy to work with him. I'm doing self pay for the specialist, but it's surprisingly inexpensive when I bring my own bloodwork (less than $200).
The better you take care of yourself, the more supportive you can be for your partner. Also, you obviously know him better than someone who's never met him, but I thought that talking my wife's issues over with her was actually helpful for me.
Take care.
Best wishes,
Good luck with stopping Gleevac - I am also on a stopping trial, last tablet was 19 September this year.
I haven't been on this blog for awhile due to being away on vacation.
Hope all is going well with you,
Greaves.
Hope you had a great vacation.
Just realised I got my stopping month wrong - I've stopped on November 19th.
My first blood test for this will be last week of December - currently doing six weekly blood tests. If I can keep getting negative for the first six months, I stand a good chance of being able to stay off the Gleevec. Though total requirement for negative appears to be around 27 months - that was the last relapse on the Australian trial.
I had my dose lowered to 300mg Gleevec after a year of PCRU. The lower dose certainly made a difference in some areas of side effects.
I saw the great news about the new treatment for AML and CLL
Australian and French trials showed around 40% of people being able to stay off their Gleevec. If the CML comes back it usually comes back quickly, but you can restart your TKI and most that relapsed have returned to PCRU.
I'll have my first blood test in a couple of weeks, fingers crossed I'm still negative. A friend of mine had a go at stopping and the CML returned, she is now negative again on Gleevec.
Enjoy the reduction and the holidays.