Random muscle aches and pain after first chemo for DLBCL

Hi again Jeano and well done navigating across to this corner of the Community although I am always sorry to see folks joining us.

as I said in your first post in the New to a community I am Mike and I help out around our various Lymphoma groups.

I don’t have DLBCL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Aches and pains during treatment is rather normal. These can be caused by a few things and in my case the main pains were from the nerves and muscle that had been trapped within my mass (in my neck) beginning to stretch as the mass was broken down by the chemo. The other cause of these pains could well be a side effect of the G-CSF Injections you will get for a few days after your treatment.

These injections are designed to ‘wake up’ your bone marrow but unfortunately there are side effects like bad bone (my nurse called it bone marrow birthing pains) and also excessive histamine production.

I was told to take the injection out of the fridge, have few Paracetamol along with breakfast then did the injection. But I was also prescribed Antihistamine like Piriton or Clarityn by my teams as this bizarrely stopped most of the pain developing (reducing histamine production). These were taken as were further paracetamol as per the dose instructions (if required) worth talking with your team about this as not a lot of hospitals do this.

The other thing that can cause pain is the lose of muscle mass due to inactivity so trying to keep some simple activity going can help this and at the same time reduce some of the Fatigue from developing…… it sounds counterintuitive but the less you do the longer your recovery will take.

The chemo you are having (R-CHOP) is strong stuff so this will stack healthy areas of your body as well as your cancer areas and this can result in short term muscle and nerve damage.

Each treatment journey is different but based on your other post the treatment you are receiving and the stage you are at the hope is cure……. this us completely diffrent from my type of NHL as it is incurable (see my story through the link below).

Always around to chat.

Hi Jeano....I'm quite a bit further down the road than you, I've had six sessions of R-CHOP and 12 sessions of radiotherapy, which I finished at Christmas. I had quite severe aches and pains in my legs, thighs, lower back and swollen feet, all of which persisted for months, starting about cycle 3 of the chemo. I'm pleased to say that most of these aches have slowly receded, and now all I have is intermittent backache first thing in the morning, which is relieved with a couple of paracetamol. These aches and pains were a trial for quite some time, but my oncology team seemed quite unconcerned, and that these aches are not uncommon.

I've just had a PET scan ready for my three month review which is on the 12th April, which I'm hopeful will demonstrate that the treatment has been effective. I don't have any symptoms, and the tiredness, weakness and general aches and pains are all much reduced. Everyone says it takes quite some time to recover from cancer treatment, and I can confirm that's true....but I'm getting there.

Thank you for replying  good to hear you seem to be on the road to recovery. I seem to be getting away lightly as I’m only having 3 cycles of chemo followed by radiotherapy. Did you get any side effects from radiotherapy?

Hi Jean. 

The radiotherapy was a doddle compared to chemo, it was quick, painless, and almost zero side effects. My lymphoma presented in my left upper arm, the bicep area, so it was easy to get at. Each session I was in and out in 20 minutes, the only side effect was tiredness, I was always knackered and fell asleep when I got home. 

Thanks. Good to know. Mine was in a lymph node in my neck, which was removed.  Equally easy to get at

Hi Jeano I had a total of 45 zaps of radiotherapy (5, 10 then 30) and likeConundrum1956 the only issue was fatuge but this was all about the regular visits to the hospital, the treatment was straightforward although depending on where you are being treated there may be other issues to look out for so do ask the radiologist….. also watch out for your skin getting dry so drink lots and feed your skin with a good moisturiser.