Follicular lymphoma

Follicular lymphoma is a type of non-Hodgkin lymphoma (NHL). If you're suffering from follicular lymphoma, or know someone who is, join this support group.

Pain associated with FL

BedrockFred
Posted by

Your treatment seems very similar to mine, I had my 5th cycle last Friday and have been fine this time apart from last yesterday afternoon, evening when I got the metal mouth and very tired, put the tiredness down to doing lots of exercise and doing gardening removing a tree cleaning out the long forgotten garage et, an early night and today feel quiet good again cleaned 2 cars inside and out now a walk with the dogs about 3 miles so we'll see how I go

My drugs seem basically the same as yours periton, antiI sickness for 3 days although like you I have never suffered with sickness, steroids for 5 days, gout pills, omeprazol,injections at home for 4 days 2 days starting 2 days after treatment 

I'm looking forward to getting cycle 6 and hopefully last cycle down 2 weeks on Friday then the anxious month wait to see if it's done its job then onto 2 years maintenance 

Still maintain drinking plenty at least 3 ltrs a day really really helps along with fruit etc  really helps things along 

Good luck to you

Together we are stronger 

Together we are stronger
Peter1954
Posted by

Hello Cecren

Glad its going okay for you and hope that as you progress with he cycles it gets easier to deal with.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Cecren
Posted by

Hi Power of Thought!

Some good news to share.  I've been sore for the last 5-6 weeks, bone pain in my hip.  Couldn't walk far without my poles and needing a stick to get upstairs because the lymphoma had infiltrated my muscles around the bone.  I felt that this was fundamentally Good Pain, because it seemed like the chemo was attacking the diseased areas.  I don't have any lumps to measure, so it was the only sign of activity in response to my treatment.  I'm not quite halfway through my programme.

It was beginning to piss me off and I actually needed painkillers twice last week.  But today, I walked about half a mile, including steep slopes, without my sticks and with NO PAIN at all!!   I honestly haven't been able to manage that for several months and walking has been an effort.

I just had to post something about it.  It's such a thrill!   I do hope you find things improving for you too, and soon!

C

Thehighlander
Posted by

Hi , this is indeed wonderful news.

During these challenging times the light at the end of the tunnel always turns out to be another train but eventually it turns out to be sun light xx

A good excuse to have a little celebration

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Peter1954
Posted by

Hello Cecren,

I am so pleased for you, it must make a wonderful change during your treatment, I have found that walking is now helping my pins and needles, its slowly getting better. So best of luck with the continuation.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Cecren
Posted by

Hi Peter! 

So pleased about your pins and needles.  It's a troublesome symptom because there isn't an easy quick fix, but anyone who's had a fracture or major surgery knows that skin sensory feeling is changed afterwards and gets better in time, so nerves have some ability to heal too.  Nobody would ever recover any function after a stroke if this wasn't so.  It's interesting that your increased exercise seems to be helping. 

It's encouraging when things get a bit better!

C

powerofthought
Posted by

Hi Cecren, Wow! Great news! It seems that your treatment is having a really positive effect.  Love the idea of 'Good Pain', closely followed by 'No Pain'.  (Beautifully and succinctly described.)  I am still on W&W and quite happy to remain so for as long as possible, and hearing how you and others have managed your treatment without too many negative side effects gives me hope that I, too, will be able to handle my treatment when needed.  Great to hear your positivity.

Apologies in taking an age to respond.  I feel I need to get my head away from FL; so I don't come on here very often.  Moreover, I am from a very musical family, and we are currently heavily involved in a project – writing/recording songs, setting up a record label, all great fun and time-consuming!

Cecren
Posted by

Hi Power! 

Sounds like you're a person with A Life.  It is great to be able to do the stuff you want in spite of the disease and treatment.  We are all more than our diagnosis, but that stuff is intrusive from time to time.  I'm due two more treatments and beginning to plan for a life off the chemo schedule.

I've been very fortunate with few side effects beyond a bit of tiredness & reduced immunity.  I try to be careful with possible infection risks, so can't go to crowded concerts or similar right now.  But I know professional singers in opera who have to be pretty cautious not to pick up infections before performances because theirs is a pretty full-on performance.  I remember a modest little opera chorus who did a flash mob in the town centre.  They were dressed the same as everyone around them, stood around casually like tourists in the sunshine, waiting for their cue.... and then opened up full blast!  People were simply riveted by the power of the music and the singers.  Ordinary looking people doing something extraordinary and sublime in the shopping centre.  I'd sat through rehearsals (just tea lady, not performer!) but it was still jaw dropping. 

Powerful stuff, music.   Takes you out of yourself and your concerns and sends you somewhere else!

C

powerofthought
Posted by

Hi Cecren,

Good luck with your remaining treatments, and let us know when you know the score afterwards.  I'll keep you posted with our musical endeavours when we're further down the track (ugh – sorry!).

Take care.