Need some hope!!!

Very sorry to hear this. Remember that medicine has no means of measuring stress. If stress was measurable, we would most certainly be surprised at the result. There are few things more stressful than a cancer diagnosis - except a recurrence perhaps. Muscle tension from stress, or even the comfort (lack of) from the chair or bed they infuse you in can trigger all manner of pain.  Rituximab often causes the tumors to melt like ice cubes left out. Relief should be felt rather quickly.

Know also that scar tissue forms at some tumor sites and if it is pressed upon or even a sudden relaxation of the surrounding tissue from treatment "may" cause some pain. If your tumors or tumor mass was near your spine, then doctor should know. If you can reach doctor or nurse, mention your difficulty and see what they suggest.

At the start, I was given ativan and muscle relaxant medication. I stopped the ativan early on, but still needed help with muscles - mostly cramping. I never qualified for an autologous transplant, as I had relapsed before they could harvest my cells. I am in my 6th remission and ultimately I had three simultaneous blood cancers (0% chance of survival some said), so chin up!

Hi again Janeh21, sorry to hear how things have developed.

As po18guy said, the treatment melts the tumours away like ice cubes (good analogy) but this often this brings aches and pains…… I had a lot of pain as my massive brick sized growth in my neck was developing but once the treatment started (this included Rituximab) to melt the growth the pain multiplied 10 fold.

All put down to the nerves and muscle trapped within the mass starting to get released and stretching…… 9 years on from that point in my journey I still have nerve and muscle damage in my neck so I have to regularly exercise these areas to keep them stretched.

Are you having G-CSF Injections?…. to ‘wake up’ your bone marrow, if so these develop side effects like bad all over bone pain (my nurse called it bone marrow birthing pains) and also excessive histamine production.

I was also prescribed Antihistamine like Piriton or Clarityn by my teams as this bizarrely stopped most of the pain developing (reducing histamine production).

My first Allo Stem Cell Transplant failed within 6 months but as there were no real effective treatments left I went on to have a second Allo SCT (I could never be put in remission to have an Auto) the amazing things is that over the past 7 years since my second Allo SCT there have been a few new drugs come on line for my condition should it relapse. My CTCL like your FL (at the moment) can be cured, the treatments used just puts it to sleep….. but your higher grade can still be cured.

“Need some hope”…….. I think that you have received this from po18guy and myself.

Sending support ((hugs)) and let’s look for things to improve quickly.

Indeed. Seven years on, I have pain in my ileum apparently caused by pressure on scar tissue formed around the tumor located there. It was concerning at first, until we determined the cause. Now, it is merely an annoyance - a reminder of you will - that each day is a blessing.   

Hi thank you for the reply and your kind words.

Today which is Day 4 has been the worst day so far.  Back pain isn’t so bad but I am so weak, out of breath  and fatigued that I can’t even stand for much longer than 5-10 minutes then I collapse onto the bed.

Perhaps my haemoglobin has dropped again.  It was already low.

If I’m no better I shall ring the hospital tomorrow morning

Thank you for the reply and your kind words. Both you and PO18guy have been through so much!

as you can see from my reply to PO18guy, things are a bit worse at the moment but hopefully it’s bc the treatment is working  rather than the cancer growing.

jane

Listen to your body! The sofa or your bed is your friend. Your body is under assault from within and without, essentially with you in the middle! For the time being, you are the collateral damage. But, you can heal.  You can rest, You can cope. We are adaptable creatures and we can learn to roll with the punches, as they say. Your will, your determination to beat this cannot be discounted! Love! Love is the strongest force in the universe. You love others and they love you. That alone indicates that you are never alone and that your life is both worth living as well as fighting for.

My hematologist likens this journey to being on a holiday cruise and treatment is the storm that you must pass though to get to that lovely holiday spot. Keep that spot in mind and those thoughts will push some of the negative thoughts and feelings aside.