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.

R-Bendamustine Treatment

Nix67
Posted by

Hi Cecren,

That doesn’t sound very pleasant but pleased to hear they have sorted you out and all is okay now.

Nicky

Thehighlander
Posted by

Good morning , so sorry to hear this and on the hottest days of the year.

Indeed, it can take far longer than you think for the immune system to build back up and during this time you do need to be watching out - so well done taking action.

A little infection to a healthy person can be nipped in the bud by the immune system, but for the first few months post treatment it’s not that simple.

Great that you are feeling better.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Cecren
Posted by

Hi Nicky!

I was thinking about you because we both had dramatic mouth infections.  We don't get blood tests after we finish a treatment programme, so I never suspected how low my immunity fell.  I realised there'd been a downward trend during treatment, but hadn't known it continued afterwards.  I just assumed it was onwards and upwards and went back to shovelling compost heaps.

On account of my age & chemo, I was at risk of sepsis, which was a scary thought.  They did the usual swabs and blood cultures for bugs & viruses, but turned up zilch, so they reckoned it was some of my own normally harmless resident bacteria (we all have them!) that caused my infection.  They couldn't know which, so the microbiologist advised a thumping dose of Clindamycin (I'm allergic to penicillin) because it's usually effective with the expected crop of oral bacteria.  The IV stuff wasn't making much impact after 3 days, but the oral antibiotic made a massive difference just overnight. 

So sorry for all you've had to cope with and I hope the remaining problems settle quickly.

C

Cecren
Posted by

Thanks Mike!

I was amazed by the low immunity, given that I'd been doing risky stuff like turning compost heaps.  But the thing that surprised me most was realising that my infection didn't come from dodgy external sources, but from my own home grown population of normal mouth bacteria.  Bit like my own body turning on me in my weakened state - the treachery of it!

It was very hot & sticky on the hospital ward, but I'm grateful they took it seriously and quickly.  And they let me take 3 cold showers a day...

C

Thehighlander
Posted by

Your immune system will continue to regenerate and grow stronger but everyone is so different so there is no real ‘normal’ way this goes.

Having been through Stem Cell Transplant my immune system is still in its infancy, my Spleen is now a spare part and taking up space in my body and as the treatment killed off all my childhood immunisation so I had to start from scratch. I was actually getting the same jags at the same time as one of our granddaughters LOL

Enjoy the freedom away from the hospital.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Cecren
Posted by

Best bit was today.  I'm officially disease free, even my grotty hip bone.

This is impressive because I was a Grade 4 with extras and my whole main hip bone & all the muscles & soft tissue around it were simply rotten with disease 4 months ago.  I had lumps in my neck and the usual stuff too, but the bone was nasty.  I truly never expected it to clear so quickly or so completely after just 6 treatments.

So, no more treatment beyond the current antibiotics.  My immunity is slowly increasing after bumping along the bottom for a bit.  It's up to one now.  No maintainance needed either - apparently the evidence for delayed recurrence isn't quite as absolute for us old biddies after Bendamustine, though it's still really valuable with R-CVP or R-CHOP.  The whole haematology thing is moving so fast that it sounds a really exciting area of medicine right now. 

I want to encourage everyone on the same course that it works, even with really advanced lymphoma.  I'm not dropping out of the site - want to hear further news!  But I do want to say how useful and encouraging it's been here all along and to thank you all!

Cecren

blocks
Posted by

Great news, all the best.

Allan
Thehighlander
Posted by

Great news and such a relief for you and the family.

It was probably said way at the start that in blood cancers, the grade number is manly a guide as to what treatment is needed and for how long.

So a celebration is in order I would say.

Great that you are sticking around as people coming in and helping new folks looking in to the dark tunnel is so important.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

johnr
Posted by

Great news and even better it was a surprise, B & R has a great track record and that's why it has become the first line treatment for some with fnhl. Even better you are not having to go back for maintenance and are free other than your quarterly check ups? 

John

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Cecren
Posted by

Just so, John.  I was glad not to go back for ritux - I'm very allergic to it & needed so much Piriton, I could've slept for 2 days. 

C

Nix67
Posted by

Hi Cecren,

That is FAB news - hope that you are busy celebrating

Nicky x 

Cecren
Posted by

I think I'm still stunned!  But it's everything I needed to hear.

Hope your continued progress goes well after the dental problems.  It's about getting on with our lives now, with a careful monitoring programme to ensure we stay well.

Good luck with the new term!  Do you get a fresh batch of little darlings in your class now?

C