Pain associated with FL

You will probably never know till you have treatment.

Hi Doh, thanks for responding.  Yes, you are probably right.  However, if someone can share their own experiences around bone pain associated with FL, then that might give me an indicator in the meantime prior to treatment.

Hi , I was diagnosed with follicular non Hodgkin's lymphoma in august 2017 , in neck, both armpits and both sides of groin , had 6 cycles of chemo and about to start maintenance therapy , I also have osteoarthritis in hands back and shoulders but since starting chemo have been experiencing extreme pain in all my joints , on multitude of painkillers including morphine but didn't help much , my gp thought it was caused by chemo , my haematology consultant disagrees and is puzzled by it , going to review after my first cycle of maintenance therapy , my thoughts are with u and hope this helped ,  knowing u are not alone in the joint pain 

Did your team mention that NICE now approve treatment for people like you?

No, what is NICE? 

My reply was for powerofthought, but as you asked

https://www.nice.org.uk/

Hi Doh,

Thanks for responding.

Yes, it was mentioned at one of my first meetings with the haematologist (back in July, 2017) that NICE had approved Rituximab as a treatment for patients in a situation like mine and that she was obliged to offer this to me.  Following some discussion around this, I asked for her recommendation, and she preferred 'watch and wait', after taking into account my physical condition and symptoms. This plan could be reviewed every 3 months.  I followed her recommendation.  I also spoke with an oncologist acquaintance, who, after my explaining the relevant facts to him, backed up my haematologist's recommendation.

Again, this topic was discussed at my last review back in October, and, because I could function normally in my day-to-day activities, we agreed to roll over the 'watch and wait' plan for another 3 months.  As background info: I am a business trainer (yes, I am still running my own business at 70 – I enjoy it!) and have the strength/energy to train a group for a whole day.  Also, I do not suffer from night sweats.  My lack of energy is only noticed when I do hard digging in the garden, or do any other strenuous activity such as go on my exercise bike and push too hard.

I will discuss treatment options again at my upcoming Feb review.  In the meantime I have found some researched stats that indicate more positive outcomes if Rituximab is commenced prior to main treatment therapies.  I will take this info to my review meeting.

Hi Ozzadiah,

Thank you for your kind thoughts and for sharing your situation with us.  I am sorry to hear you are experiencing so much pain.

I hope your pain subsides in the near future, possibly your maintenance therapy may help in this or maybe this will happen when your treatment finishes.

Please let us know how you are getting on.  I wish you all the very best, and remember lots on here will be thinking of you.

Thank you for your kind comments power of thought , will post any differences when I start my maintenance therapy , wish you all the very best 

I guess this is too late to be helpful to the original questioner, but just in case someone else reads the back issues!

I have had increasng pain in my (iliac) hip bone for some months.  On my scan it showed a lot of marrow involvement (Stage 4 FL) and muscles alongside were also affected.  At that stage I was finding it hard to get up stairs without my stick.  It's always been worse at night, but recently (last 3 weeks) it's been hard to walk around at all and I needed two sticks to get around the garden or walk to the post box down the road.

Don't know whether treatment will affect the pain, but I start chemo this week, so I'll be able to see for myself.  My guess is that if the treatment succeeds, it'll gradually improve.  I want this very much!

C