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Some questions on responses and side effects

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Hi everyone

 

After being diagnosed with CML in chronic phase in November 2015, I have now been on dasatinib for almost 4 months.  I have recently had the results of my 3-month PCR test and, although I have read extensively, I still feel quite new at this and would be very grateful if someone could answer some questions I have about the different expected responses to treatment:

 

1) As I understand it, a CCyR is when there are no Philadelphia chromosome cells in the bone marrow, and this would correspond roughly to a 1% or below result on the PCR test.  Mine has declined from 72% at diagnosis to 2.7% after 3 months, so I believe I'm at the level of Partial Cytogenetic Response.  Is this correct?  I read various posts from Zavie Miller, who used to award people numbers in the zero club - was this for people who have CCyR, or rather those who have attained PCRU for the BCR-ABL gene?

 

2)  I have been very lucky that I have had minimal side effects to dasatinib so far.  All I've had is a rash (highly manageable) and noticed some changes in my hair (seemed hardly to be growing anymore, and I haven't visited the barber since diagnosis).  These two side effects are rapidly improving and I have noticed that my hair is getting back to normal.  I would like to know whether the side effects increase with time, as I have read so many stories about people suffering with fatigue.  I would have expected that they decline as the body becomes accustomed to the drugs, but many people appear to develop more as time goes on - is this perhaps because there is less of the disease left in the body?

 

3)  I have read that few patients in the UK are treated with dasatinib as a first-line treatment as there are issues with its approval by NICE.  Personally, I really find this drug easy and convenient to take and adherence is no problem at all.  Is there anyone I can write to or petition to try to assist you is speeding up approval?  Perhaps a well-worded letter to someone detailing my positive experiences on this drug can help in some tiny way?

 

Thank you in advance to anyone who is able to answer some of my questions! 

 

With best wishes from sunny South Africa,

 

Martin

Hi Martin

 

Welcome to the wide and varied world of CML, I mean this in the sense that there seem to be so many pieces of advice, some of which seem to conflict and many of which do not reflect the real world. You will see what I mean by this as my note progresses.

 

To give you my take on your questions, these are as follows. With regard to point 1, a complete haematological response is all of your blood counts returning to normal as you mention. My experience of this is that if you compare every single thing on a sheet, there will be one, two or three items out of lets say 12 or 15 which are not quite within the normal bounds. Whilst I have no experience of a non-CML patient, my guess would be that if you took the average man in the street and did a blood count, some of the points looked at would be slightly out from norm. I am four and half years into treatment and don’t think I have ever had a completely normal count. I believe the main things that are looked at are white cells, red cells, platelets etc. and so long as these are normal or very close to normal, I personally regard this as a normal blood count. It is very good that you have been at a normal level since six weeks. Obviously I can’t comment with regard to your spleen but the one thing I do remember from early diagnosis is that we are all prone for sometimes reading any twinge into being CML related. Given your spleen was so large at initial diagnosis, it doesn’t surprise me massively to hear that you do still get the odd twinge, however it seems the spleen is back to the normal size.

 

CCyR is as you mention. A fall from 72% to 2.7% in three months is very good, remember the goal at three months is to be beneath 10% therefore at 2.7% you are doing very very well. The Zero club you refer to is for people who were PCRU.

 

Indeed Dasatinib does generally have a faster action upon your CML than Imatinib. As mentioned above, a level of 2.7% at three months is very very good and certainly not a sub-optimal response, indeed I would go as far as saying your CML appears to be very susceptible to treatment by your TKI.

 

My own situation briefly is as follows, I was diagnosed at 95% and at three months only achieved from recollection 35%, it took me a good six months to get beneath 10% and then gradually dropped over the following two years to reach MMR at 0.1, subsequently it has progressed further in reducing and indeed I am currently on a trial where I take no drugs and have not been for the past month, although given my latest result, I think I will be back on treatment in the very near future! So, your journey so far has been significantly faster than mine, and many other, and here I am four and a half years later doing very well. Without wishing to sound condescending, which this probably does, it is very very easy, particularly early on, to over-read both literally and psychologically your results.

 

Its great news you have had minimal side effects, some people do, including me have little. I was pleased to note that those few side effects that you have had are improving, generally speaking side effects seem to happen in the first few months of treatment and then settle down as the body gets used to the drug it is on, as always there are of course exceptions to this, however hopefully you will not be one.

 

Thank you for your comment with regard to writing to NICE in the UK, unfortunately however whilst it is a very kind offer, I think it would achieve very little, as there are so many other processes that need to be adhered to here. It does seem however that there may be changes afoot in the near future with regard to Dasatinib becoming available as a first line treatment, let’s hope so.  

 

I hope the above information is of help, it seems to me that you are actually doing  well. It is so easy to take a pessimistic view as mentioned, particularly early on, but the outlook for most patients with the treatments we have these days really is outstanding, I feel sure that your good response will continue and that a good long life is ahead of you, therefore giving you the ability to continue with the ‘dismal science’ of economics. Sadly this science has quite a bearing here in the UK with our access to the five TKIs that are available.

 

Best wishes from what is at this moment in time a very unusually sunny, this month UK.

 

Nigel

Hi Nigel

Thank you so much for taking the time and trouble to write me such a comprehensive reply.  Before seeing your message, I had actually edited my thread as I thought it was too long, containing unnecessary questioning of my response which has, for all intents and purposes, been rapid and excellent so far.  It's strange that my disease seems to be fought in my mind rather than in my body, as I feel 99% normal physically, and your kind words have really helped.  I am sure that as time goes on I will think much less about CML, but I guess it's a lot to cope with mentally at first.  You're quite right that one should actually beware of doing too much reading and I think I made that mistake.

I wish everyone in the UK success in their appeals to NICE for the approval of dasatinib as first-line treatment.  It's such a pity that economic factors play such a role in getting life-saving medication to patients and I am reminded every day that I'm extremely lucky in having access to this drug through my private medical aid and it is a shame that it is so expensive.  On the other hand, I am acutely aware that most of us would be facing a five-year death sentence if these drugs had not been developed, and if the high price of the drugs means future research that may lead to an eventual cure, it is money well spent.  Possibly, once generic imatinib hits the shelves, healthcare authorities may revise their stance on the other drugs and I continue to hope that this will happen.

Nigel, I wish you and everyone else registered on the DESTINY trial the best of luck as the trial continues.  I admire those who have chosen to enrol in this trial because it is quite a brave decision to de-escalate and finally stop taking a drug that has worked so well.  However, I'm sure that those who ultimately lose MMR will rapidly regain their responses once they restart treatment.  I will keep thinking of you all and will follow your updates with interest.

Thank you most sincerely once again.  This site is incredible and provides so much hope to us all!

Kind regards

Martin

 

 

Hi Martin,

Something you said in your reply struck a chord with me... "I am sure that as time goes on I will think much less about CML".

You're absolutely right in that it is very much a mental battle. I found myself thinking about it all too often at first, and doing a lot of reading just like you. I don't think that's a bad thing, so long as you are doing it to understand CML better so you can become a more equipped patient. Being  more informed patient helped me get the treatment I needed (second-line dasatinib).

It took me probably a good year before I released I could go the day without actively thinking about CML. These days (3 years down the track) it's something I still have to put thought into, but it doesn't consume like it used to. Most days, the only moment I think about it is when my alarm goes off to remind me to take my pills. The medication alarm is a lifesaver - I think I put CML to the back of my mind so much so often that I am pretty sure I would have missed many doses by now!

Best of luck, and come back here often with whatever questions or thoughts you might have. Big or small. We're all here to help each other!

David. 

 

 

Hi David

 

Thank you so much for the kind words and support.  It is as you say, and we are so fortunate to have this site to help us - just knowing that there are many more of us "out there" and that so many are doing well and leading near normal lives helps me to remain positive during what is quite a lonely time.  It's so great to be able to ask these questions and receive sympathetic and helpful replies.  We are so lucky to have our wonderful treatment options.

 

Best wishes

 

Martin