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A decision I have to make about quality of life

Hi everyone, hope you are doing well.
My CML is in a great place, my last PCR was 0.015 and we feel quite good about my long term prognosis. So everything on life should be rosy! But it isn't. I know i am very lucky and should be grateful for that, believe me i am, but the last 6 months in particular have been really difficult. I feel rubbish, I don't sleep, I feel tired all the time, I am dizzy and lightheaded, I can't find the words I am looking for in conversation and forget things (impacting on work!) I don't socialise much blaming it in the tiredness but really I just don't feel up to it. I am eating constantly to combat the tiredness and I have put on nearly 2 stone since being diagnosed. I spoke to my GP and she tested me for other causes (diabetes, thyroid etc) but all have come back fine (phew). So talking to my consultant today he suggests a few options to move forward and improve my quality of life.
1. I reduce my dosage of Nilotonib (possibly doing the destiny trial in a months time) and see if I feel better.
2. I take a break from treatment.
3. I take antidepressants (he feels depression may be my root cause not my drugs)
I need to decide my future, I can't carry on like this as my tiredness is impacting on my marriage, my ability to teach and being a good mum. I want to explore all options so I can make an informed judgement, maybe also look into alternative therapies.
Any thoughts?
I appreciate your help
Emma x

Dear Emma,

Firstly,I understand exactly why you feel 'rubbish' given your description of even just the physical issues you experience on a daily basis. I am sure many will relate to that-

I am not sure that long term therapy with any TKI can be so easily be ruled out as a cause, or at least is a contributory factor, to 'depression'. It is very hard even under normal circumstances to find a single reason why some of us might suffer in this way.

My instinctive choice from the list of options your doctor has suggested is to try to find if it is the drug that is the cause by reducing your dose by 50% through the DESTINY trial when it starts (expected to open very soon when they have sorted out some issues with 'legalise').

Similarly- given your PCR has been stable (?) at 0.01% (4 log reduction on the international scale) a break in treatment might well be a sensible option.... as long as your doctor is prepared to monitor you by PCR more frequently.

Alternative/complimentary therapy: Personally I have had very good results from a number of alternative systems, especially homeopathic treatment and hypnotherapy. I have also benefited from acupuncture and herbal medicine, as well as reflexology. You might do well to consider seeing a hypnotherapist (or counselor) at least before embarking on a (more invasive) course of treatment with anti-depressants. Hypnotherapy is a very quick way to get to the less obvious reasons for feelings that you are experiencing. It has quite quick results and so is a practical way to 'cut through' and get to the source of a problem.

Anti-depressants could be an answer and this is an option that suits some people.... maybe not desirable on a long term basis but if a particular kind of drug is carefully chosen (you need to check for possible interaction with TKI therapy) that kind of treatment may be a bridge to help you find an answer in the longer term.

Another member of this forum has had a similar experience and would I am sure be willing to advise on the issue of anti-depressants in combination with TKI therapy - if you would like me to put you in touch by email then please let me know.

I suppose what I am saying is that if I were in your shoes I would go for either the dose reduction or a break from treatment option. If that does not resolve the problems then at least you know it is not the particular TKI that is the cause, and then you will be in a better position to try something else.

Hope this has been helpful and that you find a way of going forward soon,

Sandy

Hi Sandy and Emma

I am having a similar dillema and recently asked my consultant about taking a two month break to see if my problems were side affects or not, she seemed a little enthusiastic which I think was down to reducing her budget more than anything else. BUT she did say that if you come off you can only do it once, so would have to stay off untill levels go back up, but if I tried to come off a second time the drugs would fail to work when I went back on them again. This obviously gave me some serious concerns about coming off. Still not really sure what to do, its a big decision but I think If you only get one trump card I would prefer to wait untill I had a better hand. Hope to be able to speak to someone at the conference for some expert advise. I'm afraid I dont have 100% confidence in my consultant.

Have you also been told the same thing.
Apryl

Emma,

I look forward to meeting you on the 16th as you and I have some similar nilotinib side effects. I'm about to make quite a big life change - tell you more face to face.

Chris

Hi Emma

So sorry to hear that you are feeling so low for whatever reason. I couldn't take either glivec or dasatanib and didn't want to even try nilotinib so I had a transplant. I had a variety of symptoms, some the same as you plus some others. I had several breaks of medication and whilst I am NOT advocating that, I did feel so much better off the drugs. You have some difficult choices to make. You are on your first drug (I think) so logic says that taking a short supervised break and assessing your side effects may make sense. I have heard that cognitive issues can be attributed to the TKI drugs but we all have to work out what is sensible for ourselves.

I only know that I could not continue and felt so much better off the drugs, indeed it was quite a shock as to how much better I felt. Unfortunately, though, that can't be the end of the story. For sure the diagnosis of leukaemia plus coping with family life, kids and work is very hard. I also think that sometimes these issues don't necessarily manifest themselves straight away. I personally think that the whole on-going saga of appointments, blood tests etc, waiting for results and then starting again is and continues to be very difficult. You never get off the merry go-round.

Primarily, one needs a very kind, up to date consultant who listens to you and only then can you both come to a plan.

Good luck and be proactive.

Susan

Hi Emma
There are know cognitive effects with Nilotinib for some people. Unfortunately I am one - I take an antidepressant called agomelatine, prescribed by CML consultant and the Psych dept at Kings.(It seems to be the only one that is not contra indicated with Nilotinib) They are actively researching this problem at Kings.

With help from counsellor and the drugs I now cope very well, fatigue and extreme dry skin etc still a problem but other than these issues Nilotinib suits me and is keeping my PCR down low. I had a 3 month break last year, and hope to have another one in about a years time if the PCR stays level and low. This is my third TKI and suits better than the others.
I find the fatigue is helped by walking everyday, slow and steady not to extreme - I am also needing to take a rest most afternoons, even just 15 mins seems to really help. Good luck and let me know if you want to email direct - contact Sandy.
Pennie. (diagnosed in 2001) and still going strong.

Thank you everyone for posting, your experiences have heartened (and saddened) me that I am not alone and there are options open that I need to explore further.
Chris I shall look out for you on Saturday, I am interested to know what your plans are.
I wish everyone well and I shall update more when I have news/experiences to share. I still feel a bit overwhelmed and lost but I am giving myself time to decide what to do.
I hope everyone is ok and thanks again for your support.
Emma x