Need help! Weight loss after one month of Imatinib

Hi William, welcome to this forum. I will try to help allay your fears, which are perfectly understandable given your recent diagnosis and your doctors comments.

As you have so recently started on therapy I think your continued weight loss may well be related to the fact that your body has not yet stabilised... in spite of your blood counts dropping to normal ranges.

It would be helpful if you could say which counts your doctor was referring to when s/he said 'or below'. There are 3 kinds of blood cell that we focus on: red cells - white cells - and platelets.

It would be easier to interpret your doctors comment if you could find out which type of cell is below normal range and which is within normal range. Imatinib (or any of the other tki drugs used for CML) often has n effect on the red cells by pushing them into lower ranges.... so some people find that they have low HGB level and become tired easily.

When you are first treated with TKI therapy your white cells (and sometimes platelets if they are high at diagnosis) should reduce significantly, within the first month or so... again it is not uncommon for them to fall below normal ranges. However this is to be expected as your white cells will have been mostly leukaemic (PH+) and the normal cells will be quite low in number for some time, at least until your bone marrow can recover and start to make normal (non- PH+) white cells.

In some people the platelets (blood clotting cells) can sometimes also drop to below normal levels... but you should not really worry unless they fall to below l00 or even 50 (it depends on the clinician how low they deem as safe).

Regarding weight loss: I'm not sure why your doctor would say 'you would be in trouble' if this continued. If you were losing weight rapidly before diagnosis, it would be reasonable to expect that you might continue to lose some weight until your overall health has stabilised? If you are able to eat normal sized meals you should expect the wieght loss to slow down- then as the weeks go on you will see some gain. Imatinib can cause water retention which is why you will see people talking about gaining weight rather than losing it.

Your blood test results will show how you are responding to therapy with imatinib. I know it is very hard not to panic at this stage, but if you are in chronic phase your are very likely to join the ever increasing 93% of those treated with imatinib who respond well and go on to live very normal lives.

If you are worried about anything then I think it is very reasonable for you to contact your doctor and ask for reassurance and/or your appointment to be brought forward so you can talk over your concerns in the light of his/her comments.

Your BCR-ABL level at diagnosis was 426%- remember this is taken from samples (probably marrow but sometimes blood) measuring not much more than 20 mls each and as such they are 'snapshots' rather than the whole picture.

Because the kind of molecular testing is used is so sensitive, it is only used at this stage to determine whether you have Ph+CML or not, rather than to measure the ratio (%) of normal cells vs abnormal cells because it cannot be accurate. This is because on diagnosis virtually every cell in any blood and/or marrow sample will be PH+, so as there are such high numbers of abnormal (ph+) cells present in the samples, it is virtually impossible to calculate a percentage ratio of normal to abnormal cells that is good reflection of the actual disease load.

When the Ph+ cells fall to below l0% or preferably l% levels, then the molecular test used (PCR) will be extremely accurate and will be used to monitor your ongoing response to therapy. Until then, you will need to rely on cytogenetics and/or FISH tests to assess your response.

Can I ask where are you being treated?

Sandy

Hi william, weight loss is very common at the beggining. i lost around 2-3 kg prior to dx and 4 after diagnosis (my doctor said that was caused by my body working hard killing my wbc - i was 258 k wbc at dx and with a very large spleen. bellow my belly button). My BCR/ABL was over 300% at dx too but it doesn't mean much, because of the high wbc. i suffer from low platelets now - around 80K and i was a slow responder on glivec (always in the right direction but very slow: 6% pcr at 7 months and 40% PH positive in the marrow) and i'm now on nilotinib. Good luck and try to relax a little :D

David: congrats for the MMR!! great milestone!

Thanks for such a comprehensive explanation. My first blood test result after being treated with Imatinib is
WBC 3.3L, Haemoglobin 128L, the rest is in the normal range although my RBC is at the low limit of the normal range. I feel tired easily now, and dizzy when moving quickly. And I noticed some red spots on my body. I am seeing a hametologist in Melbourne Australia. It seems like my appointment interval (every 4-5 weeks) is longer than most people mentioned in the forum at the initial stage. By the way, at what stage should the spleen size be checkd again? Very much appreciated for all that giving advices and being so supportive.
William

Hi William,

your blood counts are pretty good although your RBC and HGB being a little on the low side (normal range for HGB should be l4-l7) so this is probably why you are feeling tired and experiencing some dizziness.

Given you are very recently diagnosed I understand why you feel your appointments could be more frequent - I am not sure which centre in Melbourne has the best expertise in treating CML but I would say that if you feel worried you should contact the support nurse (if there is one) or the hematologist that is treating you and ask for reassurance on timelines.

- if you haven't done so already you could contact the australian Leukaemia Foundation for advice on centres of excellence in your region.... here: http://www.leukaemia.org.au/our-services/education-and-support-programs/...

I am sure all will be well and you will find your spleen will go back to normal size soon- depending on how enlarged it was/is.... it may take some weeks. Its size will be reassed at your next appointment.

william, 14.3 is not very big and it's probably normal now. if it were 14.3 cm bellow the costal margin than it's a little big, but it'll reduce very soon. i remember when they changed me to monthly visits. i felt insecure but now i still have monthly visits and i can't wait to move to the "three months" appointments. you are doing fine. take care.

hi, Lucas,
I guess I am a bit sensitive to any change at the moment, often wondering how the drug is doing now. I went through some of the posts, they are great success stories which are encouraging but also some that not so optimal. I will try to keep the spirit up, but just can't help to think what if the drug fails and some terrible side effects may come to me sometime in the future. Not until I see the next blood test result moving in the right direction, the feeling always comes back. All the best to you as well.
William

Hi, william,

i had one bone marrow biopsy and 2 bone marrow aspirations (they don't get a piece of the bone in this one, so it's less painfull). in my first one i was 65% positive (at 3 months) and i was 40% positive at 7 months (even with a pcr of 6% wich many times indicates a lower level of cml - it was offer my a new BMA to see if the result was right but i didn't want to waste my time), so the response was in the right direction but pretty slow and the chances of fail were getting higher (there was a chance to reach the results, but a change was the best choice). there are some new guidelines nowadays that says that fast and deep responses are better (try this link: http://www.cmladvocates.net/education/eln-recommendations/391). i was afraid to change, but everything is ok now. i'm hoping for a good response now. there's a very nice group on facebook (cmluk) with a lot of newly dx. i'm not even british but love this group. good luck and try to calm down a little.

cheers!