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side effects of Imatinib?

Hi again everyone.

Hope you are all doing well!

I am just wanting some advice from fellow cml'ers regarding some ongoing symptoms I seem to be suffering from. For 2 weeks now I have had random symptoms of light headedness, weak and heavy arms, fatigue, bone pain and cold like head colds which are infrequent. Generally I feel run down, considering I used to be in the gym at least 4 times a week prior to diagnoses 10 weeks ago. I am on Imatinib and Neproxen and my bloods have already been into remission after 8 weeks. Last count 2 weeks ago my platelets were down to 270 from 1700. White Cells 3.9 from 102 and Red Cells 12.7.

I've since had bloods by GP over past week as lymph nodes were slightly raised on neck and they said everything looked spot on still and not to be concerned about lymphs. I'm hoping I have just picked up a cold or something which has made feel like this.

My Consultant has already mentioned moving onto Nillotinib as I seem to be suffering a bit on side effects.

I just wanted some advice from people who have had side effects and some of my symptoms a few months into their diagnoses. Should I be concerned about my consultant considering Nillotinib after just 2 month and my biggest concern are they missing something and I'm getting worse or could it be something else?

Sorry for troubling people, just its all still very new and I'm still getting used to everything.
Thanks again for your help and like I say hope your all well!!

John

Hi John

As someone who didn't suffer too badly with side effects it's a little difficult to comment though I will give you my thoughts anyway. Others who had more than I will no doubt chip in.

My immediate reaction is that imatinib seems to be working given you have normal blood counts pretty quickly. How well it's working needs PCR results to say for sure but it does seem to have started well and it's bound to take time to get used to the regime. And you are just getting through the initial stage, which for everyone is an anxious time. Your body is (or has been) getting rid of the excess cells that you had as a result of CML so it doesn't seem surprising that all may not feel great. And for that reason, you should be being closely monitored - I was seen pretty often in the first three months while my counts settled, which they did.

In terms of side effects, everyone gets some. I didn't have bone pain (though many do in the initial stages so that isn't unusual) but I did have fatigue, nausea, cramps, chills, indigestion and what they call "gastro intestinal turbulence"... These all faded somewhat, especially the nausea, but I still have the others to a modest extent. Not enough, for me anyway, to consider a change. My PCR was "zero" within 6 months and has stayed there for the past 4 years nearly - so if it ain't broke, I'm not fixing it. And for me anyway, the nilotinib regime isn't too attractive. Re fatigue, it took me a few months to feel like getting back to the gym but I did eventually. I think you may need a bit of time for that.

If your side effects are bad, however, and in particular if they might affect your ability to take your medication as prescribed, then that would certainly favour a change.

My gut reaction therefore is to say "hang on", at least until you get a PCR result or two unless the side effects really are bad. Incidentally, where are you being seen? Is it a specialist centre? Wherever you are being seen, I would ask why they are considering a change - it may be that your consultant is just letting you know the options in case your side effects don't settle down.

I hope that helps - everyone is different and I am sure you will find what works best for you as time passes.

Richard

Hi Richard

First of all thanks for your in depth reply and well done on being at zero for several year.

Good to hear you are responding well and have had little side effects after things settled.

I am being treated in Northumberland. I have asked for an appoitment in Newcastle only several miles away in its centre for excellence and have just received a date for 3 weeks time today for a chat to another consultant. I have been seen 3 times by my consultant in 3 month and had a PCR of 20% after 3 weeks from 100% on diagnoses I believe. He assures me they are happy with things but I have severe knee crepitus and lower back pain in spine (Could be unrelated) which is bothering me as this is getting worse, however I must stress the knees and back pain have been with me a good few months before diagnoses and Imatinib.

I really want to ride out these side effects and hopefully others have had side effects for first 3 months or so which have levelled off or become a lot less noticeable.

Again thanks for getting in touch.

Take care

John

Hi John,

First let me say that I agree with all that Richard says in his post. Side effects can be an issue for some and a non issue for others... i.e they can and do manage to live with them of the long term. As Richard said- it is an individual thing, both in terms of the type and the severity of any side effect. However, in the first months of therapy you do need to learn to everything you can to stop being overwhelmed, both emotionally and from physical effects of treatment. The good news in your case is that you had a very sizeable drop in your Ph+ cell count within 3 weeks- if I have understood you correctly, a PCR test showed a drop of 80%? Did your doctor give you a cytogenetics test result also? Or possibly a FISH test result? These tests are normally used to gauge how you are responding in the first stages of therapy. This is because at higher levels of disease they are more accurate than PCR- which comes into its own when the Ph+ cell population gets down to very low levels 1% or less.

Nevertheless, you have obviously responded well- clinically speaking.

It is very good that you have a referral to Newcastle and you will probably see Prof. Steven O'brien who is the lead CML expert there. They are pretty much at the forefront of CML therapy along with other centres such as, Leeds, Liverpool, Nottingham, Birmingham, Hammersmith and Kings both in London, as well as others including Glasgow in Scotland.

From your tests at 3 months you will be able to assess how 'optimal' your clinical response to imatinib is. Should a PCR result at 3 months show the Ph+ population has reduce to less that 10% then you will be considered and 'optimal' responder and can expect a complete cytogenetic response (1%) by 6 months. It should be said that others will and do take longer to reach CCyR and hopefully see the levels of Bcr/Abl % down even further to a deeper molecular response (pref. a 3 log reduction or 0.1% Bcr/Abl).

Regarding your side effects. From what you say your kneed joint and lower back pain might well be connected and are not necessarily imatinib related. Have you considered a visit to an osteopath or chiropractor as this might be a misalignment of your spine?

I am sure the Newcastle team will help you sort things out and might well suggest an alternative explanation for the back pain. Diagnosis for most comes 'out of the blue' and causes such a lot of stress, which can manifest in other seemingly unrelated symptoms.

It is always a complicated time, but it will get better. Your blood counts look like imatinib is doing what it is designed to do, your body needs to adjust to getting rid of all those abnormal cells and find its way back to normal cell production. Your HGB might be a little on the low side which is pretty classic with imatinib and might account for you feeling more tired that you are used to.

Take some time and allow yourself to rest, both physically as well as psychologically.

Best wishes,
Sandy

Hi Sandie

Thanks once again for your advice. Much appreciated.

As for a drop from 100% to 20%, that is what my nurse told me. I am not sure what tests have been taken as they haven't told me at last appts. Its only recently that I am learning a bit at a time, as others have recommended. I also haven't had a bone marrow biopsy and wasn't sure if this was common?

I am looking forward to seeing Prof O'brien as I am hoping the Newcastle team will be able to give me indications of what tests have occurred and when. I can remember having a blood test which merged with a fluid turning the sample black as it was extracted and I am sure I was informed at the time it was to measure BCR/ABL and the results would be ready in 10 to 14 days. On diagnoses I had a few blood tests taken, over 2 or 3 occasions within 2 days confirming CML. I am uncertain if I have had a FISH test.

As for the back I have just managed to get a referral for physio and I am being referred to a surgeon for my knees. 6 month ago I was running half marathons at ease ;-(

Thanks again Sandie, helpful as always.

John.

hi, Richard,
I've just come across your reply. As a new cml patients just dx 6 weeks ago, it may be still too far a target to reach. But that's what we are all trying to achieve eventually. I've read about the "stop" trial which means some patients are able to stop imatinib after 2 years of molecular remission. Has your doctor mentioned this to you?
William