THE UNSEEN TRAUMA OF CLL !!

[thomasjo11]

pain that sparadicly comes from the actual bones in my fingers and the palmes of my hands which swell up but affects one hand & then flares up in the other hand the pain is unberable i can not sleep during an attack & it fells like the blood suppliy is etheir restricting or that it is not curculating causing the swelling. i have just had my bone marrow biopsy results my counsultant heamotolagist has told me that my cll is stage B & IS NOT CURABLE ! i have l enlarged lymph glands all over the place with the worst one at the back of my kneck this is exstremly painfull and is restricting my movment my lymphocyte count is 85 & the doubling time is 9 to11 mnths i was firs diagnosed with cll in nov 2015 & told that this cancer was not aggresive & that i had nothing to worry about ! i have now been told that the cll is [progresing & due to the fact i was treated six months before having cll for hep c that was dianosed for near on 20 yrs i had a 6mnth treatment with interferon & ribifen i went through hell during that treatment after i was told that i no longer had the hep c virus & now i have been told that i can only have chemo as it will bring back the hep c virus ? because even though the virus is not showing up in blood tests there are small strands of te virus that can hide & & not show up but as chemo works directly ln the liver it would reactivate the virus ?confusing to say the least, i trully belive that it was the interfeon that caused the cll as right from the start of treatment my lymphocyte count begain to rise consderably & has kept on rising ever since & the doubling time of my lymphocyte is 3 months my bone marrow biopsy showed a 20% cll cells ,I find that even among heamatolgist,s there are a lot of inconcistencys in this cancer field & personaly i would have been told a lot more about the dangers of interferon ,i am 50yrs old & apparently this is unussual for someone of my age to get cll it usually affects older people ,it is partner & my parents who have sadly in my opinion sufferd the most from the mish mash of disinformation & i hope that this will help other people just diagnosed or on" Watch & Wait ? by the way i caught the hep c virus from a blood transfusion after a car crash in spain over 20 yrs ago ? now have to have bloods & scans every 2 months i allso have to have a livers scan every 6 months, best wishes to all new & old.Thomas.

[devonrr]

Oh dear alot going on and you are obviously down.

When I was first diagnosed I was told the CLL was indolent and I probably would not need treatment for many years. Two years later all changed and FCR!

At present CLL is not curable though for some who have been in remission over 10 years after FCR they are thinking is this a cure.

It is a chronic condition just like asthma is. We all wait for a cure and they are close to that. Support Cancer Research.

We talk about our disease being a journey with many twists and turns but often it is a journey that is easy going leading us to a new life.

[Newdawn Administrator]

Hi Thomas and as Devon says, you're having a rough old time at the moment!

Truth is CLL isn't created equal and whilst some have a fairly pedestrian journey, others seem to be on a permanent rocky road. This is particularly so when we come to it with other co-morbidities than affect what we can safely have in terms of treatment. I'm sorry to hear of the accident you suffered which seems to have cascaded into a succession of health issues for you.

Your severe hand pain and swelling is curious though and isn't something normally reported in relation to CLL. Do you have arthritis or carpal tunnel syndrome which would cause finger pain and swelling?

Your haematologist has told you that the CLL is incurable but that doesn't mean it's not treatable. It's true that the median age for a CLL diagnosis is about 71 yrs but many of us on here are much younger too and we have members in their early 30's.

I'm sorry that the now dormant Hep C virus and previous use of interferon seems to have complicated resolution for you but try to get the very best advice you can even if that means consulting a CLL specialist.

Best wishes,

Newdawn

[duffymcgrif]

I had something similar happen to me and it is called "muscular skeletal" pain. This is mentioned in the paperwork you should have received when first starting on Imbruvica. I had it on both legs on my shins and both forearms. The pain was more noticeable at night when I was not active. It was horrible. Could not sleep and since I am a woman, I cried most of the night. The Doctor and nurses kind of "shrugged it off" and said it sounded like tendonitis (which I did nothing to cause this strain). I put up with it for about one week, and then, miraculously all pain disappeared. Lots of this little "unexplained" things crop up with this med, but thankfully, are short term. Hang in there, hopefully yours goes away. But, be prepared. "More" could happen. I've been on this for 4 months and my white cell counts have dropped from 196k to 115k. I'm so happy this is working for me. Good Luck.