My husband has just had his first chemo and is awaiting his second Intrathecal in three weeks. He does have mild Altzheimers and feels pain more than normal. He is complaining of pain going down his right lower arm into wrist and base of thumb. About a pencil width wide is the path of the pain. No one seems to take any notice when I mention to nurses or doctors. GP has given him a compression bandage and said to ice it a few times a day. Is this being caused by the chemo do you think,?
Hi Maudie and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from your husbands I do appreciate the challenges of this journey rather well.
There are various Side Effects of Treatments and headaches are normal but pain in the body will most likely be down to something else.
I had very bad pain in my neck and down my left side/arm ‘before’ my main chemo started (see my full story using the link at the bottom) but once my chemo started to break down my growth areas the pain was actually worse. I had a lot of trapped muscle and nerves within my brick sized mass in my neck and once they started to ‘get space’ to move and stretch the pain was off the scale so was on some very strong pain meds.
Is he having Growth Factor Injections like G-CSF into his tummy?…… I was self injecting them for 4-5 days after my 6 cycles of R-EPOCH and daily for 4 months following my second Stem Cell Transplant.
These injections are designed to ‘wake up’ the bone marrow but unfortunately there are side effects like bad bone pain going all over the body (my nurse called it bone marrow birthing pains) and also excessive histamine production.
I was told to take the injections 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). If he is having these injections it’s worth looking into this.
But if he is not very active he will develop muscle wastage so doing any activity will cause pain.
This is a hard journey to navigate but we are always around to help and chat.
Yes Filgrastim (Accofil) is one of the types of G-CSF injections.
Chemo kills the cancer cells but will also kill healthy cells and as a result kills our Haemoglobin and Red Blood Count these drive our immune system so low counts opens us up to Infection so the G-CSF injections are a tool to help encourage the Haemoglobin and Red Cells to grow quicker reducing the infection risks.
As I said in my first post above I was dealing with bad pain well before I had these injections due to my mass breaking down…… and even 10 years on since I started my chemo I still have nerve damage where my mass was in my neck but exercise tends to keep it keep it under control.
Where is your husbands lymphoma mass?
The pain may even be Peripheral neuropathy (nerve damage) he is experiencing….. I had bad PN in both my hands with tingling sensations running up my arms.
Depending on the treatment he is having his clinical team can tweak the treatment to over cone some if this. This was not recommended for me as I had to have the ‘full force’ of the treatment as this was a steppingstone to get me ready for my Stem Cell Transplant.
It can be a lonely journey supporting family so you may want to check out the Lymphoma Action website (all the links above are take from their website)
Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
They run regular Support Platforms with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a dedicated Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
((hugs))
This is a long way from his hands and arms....... but it's amazing how connected the body actually is - give the helpline a call.
