Non hodgkins joint and nerve pain

Hi Nico  and welcome to the Community but sorry to hear about your partner. I am Mike Thehighlander and I help out on the Community.

I am sorry that he is having all these issues 2 years post treatment. Have his team confirmed that this is still NHL. Has he had a CT or PET scan and biopsy on any growth areas to check what is going on?

What type of NHL was he originally treated for?

What treatment regime did he have? 

What treatments are they looking at now?

I am now three and a half years post my very last treatments and still have problems with nerve damage in my neck and some knee pains but not as bad as your partner.

Is he been given any pain and anti-inflammatory  medication to help him?

In the early days I was in s wheel chair but my main way to over come the pain and get moving was lots of strong pain meds and small but regular exercise as the body does tighten up during treatments.

This is not a lot of help at the moment - just more questions as I am trying to understand more about what is going on.

((hugs))

Hi Thehighlander 

We mentioned it at his last appointment a couple of weeks ago  but they didn't seem to attach too much importance to it. We are assuming it's related. His last scan was March 2018.

He has waldonstroms non hodgkins lymphoma. His treatment was bensamustine 6 cycles and he was ment to have rituximab but he had an allergic reaction (his eyes swelled and he lost his sight for a short period), so he only had one cycle of this.

At his last appointment (2 weeks ish ago) they were concerned with his anaemia. They took additional bloods and we had an appointment come through yesterday but it's not until June. They talked about a tablet, the name escapes me, and then possibly a stem cell transplant.

His treatment finished in may 2017, so we were thinking that perhaps this is swollen nodes pushing on nerves ?!?!? But obviously only guessing. Today it's his knee joint. Its swollen and un bendable.

He has some ibuprofen that he has been taking.

I was just hoping to gain some reassurance that it's nothing too serious to worry about.

Thanks

Hi again Nico, just in the door so sorry for taking so long to get back to you.

If I were in your shoes (and have been over the years) I would try and push for a quicker appointment or at least phone the clinic every few days to see if there are any cancellations.

The fact that you have no clear answers/information says your brain is in overdrive as you are living on “what if’s” and this brings stress and uncertainty.

So even talking with the Clinics Specialist Nurse could help a lot.

He may need to go see his GP to get something stronger to keep him going. Trapped nerves are a total pain - no pun intended but at my worst time zone was rolling on the ground - and I was on very very strong pain meds.

The fact that Stem Cell Transplant (SCT) is being talked about is a big deal, I had to have two Allo SCTs with Cell from my brother and this was the only thing that could get me into remission and save my life.

For your own state of mind get him to his GP or contact his clinic to get some pain meds and get your feet in his teams doors to get some answers.

Keep posting as we can help out.

((hugs))

Hi Mike

Thanks for your reply and sorry it's taken me so long to reply.

I managed to get his appointment brought forward and we saw his actual consultant rather than one of the team. She was very concerned with his legs.

He has been given folic acid and 10 days of b12 injections. This is to see if it's a vitamin issue or the lymphoma. Hes on day 7 today and we cant see much improvement.

Hes also got to have a ct/pet scan, bone marrow test, spinal fluid test and an MRI.  Hes having the pet scan now.

My mind is in over drive, that they think it has spread to his central nervous system or something. Unfortunately googling isn't always the best idea !!

Hi Mike

Thanks for your reply and sorry it's taken me so long to reply.

I managed to get his appointment brought forward and we saw his actual consultant rather than one of the team. She was very concerned with his legs.

He has been given folic acid and 10 days of b12 injections. This is to see if it's a vitamin issue or the lymphoma. Hes on day 7 today and we cant see much improvement.

Hes also got to have a ct/pet scan, bone marrow test, spinal fluid test and an MRI.  Hes having the pet scan now.

My mind is in over drive, that they think it has spread to his central nervous system or something. Unfortunately googling isn't always the best idea !!

No problem in taking time to get back to us - this journey is hard, confusing and very stressful. To me, it looks like his team is covering all the bases and with this a plan can be put together is required.

Google is not a safe or encouraging place to spend your time in, talking with people who have walked the walk can be more productive.

Keep us up to date once you get more info ((hugs))

Hi

Again sorry for the delay in replying. Ive been meaning to update you for a while but been to and fro from the hospital plus have an 8 month old so time runs away from me.

My partner has been diagnosed with bing-Neel syndrome which is the cause of the numb legs and trouble walking. A specialist in London whos interest is waldonstroms has taken over his care. Hes had one lot of chemo already and Hes currently waiting for a bed to get his second round of chemo. Hes got to have 4 at the moment then a review.

Thanks

Xx

Hi again Nico and it’s always good to hear updates.

Your hands are full with a little one in the house, we had one of our 4 granddaughters (5 years old) for a sleep over last night........sleep!!

This may sound odd, but it’s always more reassuring that his team has an understanding as to what is wrong and have identified a treatment,

My understanding is this is very rare and directly related to his rare condition effecting the Central Nerves System........ but reassuring that the consultant is working in the area your partners type of NHL is presenting.

Do you know what chemo they are using?

Hang in there and keep your mind fixed on the end goal in all this xx