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Update in response to Chrissie.

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Hi Chrissie.

Thanks for asking, very thoughtful of you.

I haven't been on the forum for a while as I didn't want to bother anyone with my issues, but since you ask...

Things have gotten quite bad and I am struggling to do basic stuff, for instance open doors that are heavy, climb into car, and for 7 months now I haven't been able to lift my son who's just turned 2 (mind he is a big lad). I have had a 4 week spell off work as I am shattered and sore all the time. Neck, back, ribs, shoulder blades, hips, groin, knees and ankles. If I move I seem to pull something. In the morning I get up and my thoracic spine feels glued to my ribs.

I am still in the discussions for a transplant and am getting mixed opinions. Some say it may be the best course of action, potentially rebooting my immune system, others say if I respond to TKI's from a molecular standpoint then maybe not. I'm back next week actually. I am also in the process of having HLA matches of my 2 brothers. Obviously it is not a decision I am going to take lightly but I feel I need to do something, as two year on and 4 TKI's later I am getting worse and worse. Has chopping and changing been detrimental over time, with the results coming off the back of EuroSKI withdrawal literature?

I have just found out that I have had an elevated IGA marker for months which has just come to light. That has made me question whether a treatment break was of any use at all if there is another potential factor. My consultant is supposed to be speaking to an Immunologist for some feedback, I have also been referred to a Rheumatologist for a second time.

I have been off Bosutinb now since the end of November and my PCR had elevated from 0.04% to 1.7% by the first week of January. I had my latest PCR last week and will get the result this week, obviously I expect it to be higher this time. Usually I feel better this far into a trial, but this time it feels like something else on top. Personally I have questioned the validity of the treatment break if an inflammatory marker such as the IGA has been up before I even started the trial?!? I believe CML/TKI's may trigger Rheumatological responses in a small minority. Steroids have been suggested by the transplant team, not sure if anyone else on here has had similar issues or taken steroids?

Anyway at the moment I am struggling to see the wood for the trees if I'm honest. I am desperately trying to keep active, walking, pushing on, staying positive, trying to plan ahead, but I feel like I am much older than 36 and shuffle around like I am 90. Just before diagnosis I was cycling, in the gym everyday and operational in the emergency services, now I am finding it very hard to put my socks on, what will things be like in a years time or two, if the past 2 year are anything to go by.

How are you? How are you holding out on destiny, last time I believe you were hovering around the 0.05 mark nearly a year in?

Thanks again for your interest and kind words to date, and sorry if this is long winded but I wanted to give you an accurate account.

John

PS, I have created a new thread as I didn't want to hijack Sandy's topic regarding feedback for the CML Patient Day. Also anyone who is new to CML, I believe I am quite a rare case so do not read this and think this is normal, plenty of others on here seem to lead good lifestyles and have done so for many, many years.

Sorry to hear you're having such a tough time.  Hang in there.

I am so sorry to read your post.Things have obviously not improved for you. There's not much we can say, except that we are thinking of you and wishing you well.

(In answer to your question, I came off DESTINY at month 12 on half dose as I lost MMR, went back on full dose and have now regained MMR).

 

I really hope things improve for you

In my thoughts

Best

Chrissie

John-Paul.... so sorry to hear your are still suffering. I know you have tried everything but as I am at a loss to find an answer I thought I might as well share this link... about magnesium supplementation again but maybe worth another try- https://www.nutriadvanced.co.uk/library/educational-literature/informati...

Sandy

Interesting that it seems to be coming to light about issues surrounding TKI's and CML creating a small cohort of individuals with muscularskeletal issues.

That is my only problem, I have not suffered with GI issues, I have not suffered with eye problems, or the other adverse effects linked to TKI's.

I was at clinic again today where it was decided to resume Bosutinb at a low dose as my PCR had elevated from 0.04 to 1.7 to 5.9 in little over 2 month. My consultant discussed decision making around transplant, he is going to speak to colleagues around Europe to see about any of their patients who have presented with similar problems to me. I told him again that when I move, I pull something, leaving me walking like an old man with the turning circle of a large yacht. I am being sent to a Rheumatologist again for a final look before deciding on a transplant. I'm back on Monday to see the Transplant team to discuss matches and the likes.

All I know is this, less than 12 month prior to my diagnosis I was on a treadmill daily in Mexico doing gentle exercise when everyone else was sipping Mojitos. I was on a Fire Engine up until diagnosis, and besides the inevitable bone pain, high heart rate and huge swellings from platelet formation I was fine!

Maybe it is CML related? Maybe it is TKI related? Maybe it is something in conjunction with both, but as a Rheumatologist, Neurologist and other professionals have said they can not pin it to anything, I am only left with what I have, CML and TKI's. They are the only consistency, the only change in my life, and the only diagnosis to date.

Steroids were mentioned to date. As you have mentioned Sandy, I would love for someone to look deeper into the thyroid thing and really pick at the elevated IGA, which I believe is linked to infection as well as Rheumatological problems such as lupus and RA. I have spoken to a few CML experts internationally now in my endeavours to find a solution and it would seem a small minority may have a response to TKI's that is not like the majority. When asked today, what my thoughts on Transplant were, my response was, if I have no other solutions and the decision is envidence based, then I can only base it on my situation to date...

Diagnosis: On Fire Engine and running around wearing Breathing Aparatus.

Year one: No longer operational but carrying son and on exercise bike.

Year two: Slowing at work but at best washing car.

Year three: Unable to lift son, struggling into bath and swapping my sofa for a high back chair... I expect we ache a bit with age but I think this is a bit extreme at 36 and so quick.

Where will I be in year four or five if I continue like this? I would love to say things will change but going off being on and off four different TKI's and medical professionals not finding anything apart what's consistent with CML, what option do I have?

Anyway, thanks to Darley for your kind words and also to Chrissie too. Stick in their Chrissie with your MMR despite your dose increase. Sorry again folks for the long winded update.

Agian I must emphasis to anyone on here new that I seem to be a unique case so don't be spooked.

John

hi, john, i'm sorry about your situation, but i think you should consider another option: a clinical trial. there's a drug, abl001, wich is showing great results and few side effects from patients resistant and/or intolerant to other tkis. If i were you, i certainly will look foward this clinical trial. anyway, good luck, mate. sending best wishes!

Hi Lucas, 

My team are looking into TKI withdrawel with colleagues in Europe, at the moment I have resumed Bosutinib as PCR was creeping. It would seem they are somewhat in unchartered territory, but can see there is a strange situation going on. Back to transplant team tomorrow.

Thank you for your information and concern. Obviously I will watch and maybe discuss that trial with my team. 

Take care of yourself.

John

 

 

Hi John and Lucas,

ABL001 Phase 1 trial is - unfortunately - not open here in the UK. http://www.cmlsupport.org.uk/clinical-trials/abl001%E2%80%8B. 

John... have you tried researching serraptase for fibromyalgia? 

Serrapeptase is used for painful conditions including back painosteoarthritis,rheumatoid arthritisosteoporosisfibromyalgia, carpel tunnel syndrome, migraineheadache, and tension headache.

Fibromyalgia syndrome affects the muscles and soft tissue. Symptoms include chronic muscle pain, fatigue, sleep problems, and painful tender points or trigger points, which can be relieved through medications, lifestyle changes and stress management.

http://www.webmd.com/vitamins-supplements/ingredientmono-1115-serrapepta...

Hi Sandy

I have researched alsorts. My only trouble being I have no idea what I am attempting to treat. I have mentioned Fibromyalgia, and have been told no, perhaps, then no again, had points pressed etc, etc. Even then I have GP's and experts suggest it is a bit of a catch all themselves.

I am awaiting another round with a Rheumatologist, as my oncologist wants to be absolutely sure before going to transplant. However if the last meeting was anything to go by, I am not going to hold my breath. I mentioned it was sore lifting my arms above my head, to which I got a reply of not to lift my arms then, and wear zip up t-shirts to avoid pulling jumpers over my head. Slapstick stuff, where on earth do you purchase zip up t shirts! 

I have been sending emails across the world, traveling the length and breadth of the country trying to get answers, and endlessly researching online. I will keep going.

I have since learnt in my last transplant meeting that I do indeed have a full sibling match. Which is obviously good news! I asked the team if they had seen anyone like me and was told about another lady, who had the same issues with non specific pain on and off treatment and she is now doing better on all scores following a transplant.

I just wonder if this IGA marker has been risen for some time, I am learning since my diagnosis, something inflammatory is going on, at some level, and I am worsening month on month. When do you press the button? If I was 75 I would maybe try and just manage it out, put some comfy slippers on and get a window seat, but I am 36.

I have attempted physio on numerous occasions, and every time I have ended up on my back for weeks after. I fully expect pain and aches as you improve muscle memory and flexibility, but to be put in bed for days following gentle stretching, that's just ridiculous.

Thanks for the links Sandy, I am open to anything, and will try anything. Still on the magnesium spray.

John

 

What a very difficult situation for you.   I just sincerely hope that one way or the other that a root cause can first of all be found and then treated or managed so you've not in so much pain and discomfort.

Good news that you've got a sibling match.   Presumably you've now got your brother/sister in bubble wrap safely stowed away just in case and as your contingency plan ;)

All the best

 

Bubble wrapped indeed.

Many thanks for your kind words. Hopefully as the weeks go by, I become closer to a more stable platform to build upon. Interesting that my IGA marker has now been clarified as being elevated since diagnosis (2¹/² years). If the increased IGA marker suggests inflammation within my body, that would perhaps link to my symptoms to date.

I have seen a Rheumatologist before and am now being sent back, I will see what that outcome is. However, I do feel that I am pushing an elephant up the stairs trying to communicate the problems to some in healthcare.

All the very best.

John