Recovery

Hi again JohnT2 …… looking back at your past posts that say you have Follicular Lymphoma?…… is this still the case or was it DLBCL that this group covers?

My actual treatment was  for DLBCL yes

maintenance therapy is often used for FL and a few other NHLs but I am not sure about preventative chemotherapy.

I was told my type of cancer carries a risk of travelling to the brain and spine so may need chemotherapy to prevent this

Ok so this may well be CNS prophylaxis 

Not something that I have had but let’s see if any group members has had this treatment 

Yes that's what the treatment is 

Hi JohnT2 

You may want to check out the Lymphoma Action.

Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms. I highly recommend these groups as there is nothing better than talking with others who have walked the journey.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Good morning JohnT2 

JohnT2 said:

I was wondering what are people's experiences in regard to length of time it takes to fully recover after treatment as my last cycle was in January and I still feel very tired

….. this is a how long is that ball of string questions…… at 3 months post treatment you should be seeing some progress in your recovery….. slowly doing slightly more than you did say last week….

But the recovery is ever so different from person to person and does often depend on how active you were during treatment

Hi John.... I was diagnosed with DLBCL on March 9th 2022 and had 6 sessions of R-CHOP during the summer, then 12 zaps of radiotherapy, finishing around Christmas 2022. I was given the all clear in September 2023, and I'm now on follow up scans every 4 months or so, the next one is due in May this year. The treatment was gruelling, but I tolerated it quite well, but the after effects are a different matter. I was tired all the time, very weak and no stamina, and I had pretty severe aches and pains in all my major muscles. I also had neuropathic pain in my hands, and particularly the soles of my feet, including the toes.

This was pretty bad for the first year, then has slowly improved over the last few months, now that I'm coming up to 18 months post treatment I can start to believe I'm getting over it. The aches and pains are still with me, but not as severe as they were, and my strength and stamina are both getting better. The neuropathy hasn't really improved, I think that's going to be pretty much permanent, but it's not too debilitating and I can certainly live with it..

Am I fully recovered? Hell, no, is the answer to that, but I think I'm getting there. If things follow on track then I think it'll be about another 6 months to a year before that happens.

Last thoughts.....the large dose of steroids at the beginning caused me to put on forty pounds in weight, which is still with me...

Thanks for your detailed reply my experience pretty much is the same regarding the tiredness and fatigue and I have been forced to temporarily give up work hopefully not for good just waiting on a decision on CNS chemotherapy I did have and still have an issue with toe and fingernails all my toenails gradually fell off and now some fingers are going the same way hope your future remains positive.