CML

2 minute read time.

FormerMember

19 Jan 2013

So I wrote the above when I was 22 so excuse the dramatic sense. I am now nearly 25 years old still have CML and currently taking dasatinib. I have searched the web all the time for answers or anybody around the same age going through what I am for help but I can’t say I found anyone or any blog giving me any information. So I thought why not me, so here goes hope it helps people and hope someone can help me.

I went to see my doctor in October 2012 my three month check-up was told I’m doing great and I didn’t need a blue blood form every 3 months just every 6months seemed like a good sign at that point I didn’t even need to give bone marrow tests I was doing good. Went back in December 2012 and bam my results where high again (I’m not much for the medical jargen) and first thing they wanted to do was re test it and he sent of the bloods again at that point I had been completely ill for a few weeks in bed always sleeping constant head ache, numbness in my hands legs and arms hurting. I was sick of it could not do my day to day things. But the doctor was more focused on my results and said he will see me in 4weeks. As you can imagine they were very long 4 weeks.

4weeks later which was only a few days ago 16^th January 2013 the tests had confirmed that dasatinib was not working anymore, and the next day all the doctors had a meeting then they would decide what to do next the last medicine or a bone marrow transplant. Now I’m still unwell he has ordered a CT scan and a Lumber puncture for that. On Tuesday 22^nd I am to go in for a bone marrow test and a LP. I have drove myself crazy thinking about what they have decided.

I haven’t told my family anything solid yet as I don’t know whether they will put me on the new meds I took immatinib and dasatinib previously so anybody with previous experience with the third type of med please get in touch.

Also the other choice is a bone marrow transplant I’m only 25 I love love kids want loads have none yet and my biggest worry is not being able to have any could someone please get in touch with me on this any experience’s will help.

Right now I’m waiting for Tuesday and I’ll know more about their decision then so need Tuesday to hurry up. Will keep you guys updated.

FormerMember over 11 years ago

Hi. I've just come across your blog on here. I don't have CML so can't comment on that but I have Had a Bone Marrow Transplant. I was diagnosed in 2003 (age 23) with very severe aplastic anaemia (bone marrow failure) it later started developing into MDS (a form of blood cancer). I had two bone marrow transplants, the first did not work due to complications. The second last year in May was very successful and I now have a new 100% donor cell marrow. There is so much I can say about the transplant so it's hard to know where to start. I will say, it is a tough thing to do but it can and does work successfully for many many people. I had no choice so had to do it btu i think that was easier. The decision was taken out of my hands. I had two lots of chemo and to be honest that wasn't too bad, sickness etc... The main thing is once you've had the new cells and they are waiting for them to take and grow in you...you are very vulnerable and susceptible to illnesses etc... Every transplant experience seems to be different when you speak to different people. Because I had two, I ended up being in hospital for around 7 months. I am now well, although still need to be careful around people with illnesses etc... As my immune system is developing and it takes years really. I see it as a tough period in my life. It was a year out of my life, and I am 32 so I figure I have a lot to live for now. You mentioned children. The chemo they give you for a transplant doesn't necessarily mean you will not have children, it depends on the drugs they decide to use for you. I had two lots and have now got inactive ovaries so in effect the menopause and can't have children. Nth is is something I dealt with prior in my head And prepared myself for. I wanted to save my life, that was most important to me. However prior to a transplant you can see a fertility consultant and you can go the route of freezing eggs for later use etc... I didn't do this after the consultation for various reasons. I hope that answers some of your questions. I did write a blog at the time but its not quite up to date now but it is available to read if you want. Google punkamunka.blogspot.co.uk
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FormerMember over 11 years ago

Thank you for replying I can't explain how much that means thank you :)

How about loosing hair? did u loose eyebrows and eyelashes?
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FormerMember over 11 years ago

Can you take a friend or family member with you on Tuesday? I know you may not have anything solid to tell them yet, but I'm sure they would want to support you.

When discussing a transplant, can you also ask about fertility and whether freezing eggs or similar might be an option? I had sperm frozen before having chemo that might or might not leave me infertile - but this type of precaution is rather easier for men!

If you give Macmillan a ring on Monday, they may be able to tell you a bit more about things like fertility implications of the type of transplant used for CML - 0808 808 00 00
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