Inceasing pain after chemo? Especially after 8 years. But glad to say still in remission

Hi again kaf2 it must be over a year since you first posted on the group. As you may remember I have a totally different type of NHL but I also had 2 Allo SCTs........ if I remember you had an Auto SCT.

No answers from me unfortunately........ but I can reflect on my own experiences.

Looking back at your first post I am a good few years older then you but even although I am coming up to 9 years since my second Allo SCT and living as good a life that any 69 year old can be living......... but I still have aches and pains that can be traced back to the treatments I had.

I often have bad (painful) spasms in my hands where my fingers lock in place especially my index finger and thumb..... and it's getting worse as the years go on........ 

The treatments we have (makes no difference the type of NHL) can have very long lasting effects on our muscles and nerves....... I have significant nerve damage in my neck - left hand side..... as my brick sized mass grew round nerves and muscles in my neck and permanently damaged them...... if I am not active (winter is worst) I get more pain in the area and this spreads down my life arm and fingers.

I regularly sit at night watching TV with my two stress balls (little hand sized rugby balls) and work my fingers...... in the 3 years post SCT I was going to an exercise class at our local Maggie's Centre but covid put a stop to this........ I still have the resistance bands that we used and I often do exercises every morning.

Back in 2010 I was diagnosed with Thoratic & Lumber Spondylosis - Spinal Osteoarthritis......... but surprisingly this has improved over the years due to the regular exercise I do.

Hi, yes, I remember now, I had a lapse in memory as I had a big Bi-polar relapse due to a change in my psychiatric meds after 22years. But am pleased to say that the new meds now seem to be working better for me (even  though the recovery was grueling), and since the new psychiatric meds change and a change in where I now live, instead of being scared to go out (as i suffered bad paranoia and low self esteem, and big mood swings)and i had only gone out of the flat about once a week, i now go out every day and try to get my steps in. I gave up smoking 8 years ago too. 

I don't know if any one has experienced (of which there must be people out there) of dealing with cancer treatment whilst suffering a mental illness. But no one seemed to care and understand my mental illness needs or med's and one of the hospitals I was having treatment in had ran out of the tablets that stopped  the side effects (jerky movements) and  they didn't understand what they were for and not even had been flagged up about my long standing psychiatric illness. I went without those tablets for near-on two weeks and some of the nurse thought they were anti sickness tablets and hadn't a clue, even though I was trying to tell them. I had battled that treatment along side with my paranoia, quite well, considering being in four bedded wards with strangers around me. It was bliss when on one occasion, because of an infection after my stem cell treatment, not the infection, but the fact I was in a single bed room. Which I truly believe helped me recover better in. It was great that I was on my own. And someone's kind donation had bought everyones single room a TV.

I've asked my haematology consultant to please, please flag up my bi polar next time I have treatment. Hopefully he will. Fingers crossed.

Great to hear from you. 

Oh navigating Lymphoma along with the challenges of SCT is bad enough, but I am at a lose as to how you deal with the challenges you have and are dealing with…… but great that you are now now living in a ‘better’ place, this must make such a difference.

We did not solve your pan issues, what are your medical professionals saying?

My mantle cell lymphoma is in 8 years remission, I'm glad to say, and when the consultant last saw me, he said my blood results are "amazing". I always strive to make the consultant laugh, and I always seem to do that, even in the early days. 

As for the ain, the consultant doesn't seem me for long, once a year, and I keep forgetting to ask about my pain, I was seen at an outpatients appointment and the professional there said I have problems with my nerves in my wrists and legs, but really I should be asking my GP again for me to see them again, to see how it has progressed, as at the time (two years ago or more)  the professional said I'd done well up to now, as he, in his experience, said that after people have had chemo, they are sent to him quite a lot sooner than I did.

So really indeed to ask my GP to refer me to the nerve team again (I've forgotten what the department is called). And see what they can do. 

As for those stress balls I've got some and I will try and use them, and I've got a circulation bumpy ball to improve circulation in my feet. 

I also drop things around 30 times a day and find it hard to grasp things. Which immuses my husband sometimes. 

But can also be annoying 

If I can get to see a GP, I will ask to be seen. And next time I see my haematology consultant I'll also tell him about my aches and nerves in my hands and fingers. 

I do take 2x 30mg of codeine twice a day but I refused to have any more than that.

I think my GP has long forgotten about my chemo, as they are very busy and see a lot of people, as when I said this there a link, he said "oh, yea, it probably is the chemo". 

Do go back and see your GP and get a referral to the correct clinic (don’t know what it’s called) because you need answers as it is obviously a challenge you don’t need to live with.

Thanks for that. Warm wishes