JP
Posted by

Any one else?

JP
Posted by
06 Feb 2016

My journey so far, and a sticking point...

Hi

Just wondered if I could ask for a bit general consensus and any feedback from fellow sufferers?

I was diagnosed with CML back in June 2013. I started to feel poorly approximately 7 month up to diagnosis. Bone pain, weight loss, unusual swellings, resting hr 142. My platelets were 1400 on diagnosis so that would explain the swellings perhaps!

At diagnosis I was still an operational Firefighter. Fast forward 2 and a half years and I am struggling with daily tasks, including getting into cars, bending down, and getting into the bath. I am now office based and am finding even that incredibly challenging for fatigue and pain. I have seen a Rheumatologist and a Neurologist and they didn't find anything else untoward apart from the CML.

Treamtent wise I have tried, Gleevec, Nilotinib, Reduced dose Nilotinib, Sprycel, and Bosulif. Usually when I have been off treatment I can feel 70% better, especially earlier in my diagnosis, but currently I have been off treatment for 3 months, my PCR is headed over 5% from being 0.04 and I feel super stiff! I mean slightest movement can see me pull something or something go.

Since the onset of the CML and over the last few years I have just felt worse and worse with only slight glimmers of hope.

I have had conflicting opinions about going for a Allogeneic Stem Cell Transplant. I have been told by some that it is a viable option, and maybe for the best. Others are unsure as I repsond from a molecular perspective to TKI's and as the pain has never totally subsided even off treatment (although at times I have felt noticeable difference on previous breaks from TKI's). I wonder if my immune system and building blocks need a full reset as if the CML or TKI has or is triggering something else over the time I have CML.

My team are leaving the decision to me. I am 36, have a wife and 2 year old son, and I feel like if I stick I will deteriorate more and be housebound, however if I twist I may stop what is going on... However I do know the huge risks involved. 

Prior to diagnose and the onset of problems I was super fit, cycling 90 in a day, gym every day. Surely something related to CML, the TKI's compounding has done something.

Basically I am wondering if anyone has had a transplant who has had similar issues? Has anyone had transplant and improved to level that they were at or close to? Has anyone elected or contemplated transplant?

I am just worried I make the wrong move and make things worse. Alternatively if I don't move now, what ever is happening to my body is going to be irreversible. Joint, bone and muscle pain and clunking on.

Many thanks for your help in advance.

Important: Anyone who is newly diagnosed who may stumble on my post, I believe I am not a very common case.

Apologies if I am in the wrong place, this is the first time I have been on bloodwise.

Comments

17.02.2016

JP,

Really sorry to hear that you're struggling with the side-effects from your treatment for CML. Having tried a number of treatments I can understand completely why you are considering a transplant.

TKIs have proved enormously successful and in many cases the side-effects are much more manageable however you are certainly not alone. Whilst not in a positition to be able to advise you on the best thing for you to do going forwards - only you can ultimately do that - I think the best thing that you can do is to get as much information on the various pros and cons of the options that you have available to you including transplant which as I'm sure you are aware is not without its risks and can also lead to some very severe long-term side effects.

The first port of call in this respect should definitely be your consultant and your clinical nurse specialist but we also have some information on CML treatment which might be of interest: https://bloodwise.org.uk/chronic-myeloid-leukaemia-cml/treatment-and-sid...

 I'd also thoroughly recommend getting in touch with the CML UK Facebook group which is a private group run by CML patients for CML patients and they will almost certainly be able to relate to a number of the points you've raised as well as provide you with some additional support and information. Here's a link to their page: https://www.facebook.com/groups/cmluk/ 

From a personal perspective I opted for the transplant when I was diagnosed 11 years ago when drugs like imatinib had only just become options and long-term survival rates using the treatment were unclear. They've come a long way since then and I think that if I had my time again I would have opted for that first and seen how I got on as while the transplant was a complete success I've since gone on to develop a lung condition as a late side-effect.

Prior to the development of the lung condition which has seen a drop in my lung capacity and ability to do exercise I did have some fantastic years where I was back close to where I was before (although I'm not sure I can really remember what being normal is like anymore!) and managed to achieve some pretty extraordinary things like run from John O'Groats to Lands End. Below is a link to my blogs in case you want to read them but do remember that everyone's experiences are different. If you ever want to talk in more detail please don't hesitate to drop me an email at ajackson@bloodwise.org.uk

Regards,

Andy

Blog link: https://bloodwise.org.uk/people/andy-j-0

03.05.2016

Hi Andy

Many thanks for getting back with your story. I have sent an email to the address you have posted but it would seem you haven't received it.

Sorry to hear about your lung condition, I hope this is not too severe, and I wish you all the best with this.

I am currently having a tests and a steroid trial also.

Take care and hope your doing well.

JP