Latest treatment options relapsed indolent follicular lymphoma

Hello purrwoman,

Firstly, welcome to a club none of us chose to belong to.  I appreciate the feeling of this diagnosis being the last straw when you've already got a lot to cope with.  There's never a good time, but it sounds as though you're coming up for your first programme of chemo, having been on watch and wait till now.  Is this right?

These indolent slow growing lymphomas are things we sometimes have for years before they get diagnosed.  A stage 2B sounds as if it is just on one side of your diaphagm, even though you probably had it for as long as 3 years.  This is why we get 'whole body' treatments like chemotherapy, to seek out & attack every bit of lymphoma tissue, wherever it is.  It is effective too.  After just 3 treatments, I had only one site still showing disease: the rest of it had gone.  After 6 treatments, it's all gone.

I've had newer targeted therapies - rituximab and bendamustine.  These targeted treatments are gentler than the older cytotoxics.   It's been tiring and a bit of a faff getting to the hospital & sitting around with a drip, but perfectly tolerable.  The older treatments are still in use.  Don't be afraid of treatment.  The side effects you might've heard about are managed very nicely these days.

I'm nearly 70, so 63 still sounds quite young to me!  You too have a future to enjoy and a disease that's treatable.   You sound as if you have learned to cope with significant  existing disabling conditions and found ways to live with pain that can be much worse than anything I experienced during my lymphoma treatment.   I respect your courage in doing so.

Treatment does put you on a fixed schedule for a several months.  You do have to be careful to avoid infections and drink plenty.  But the programmes aren't that long by cancer treatment standards - mine was just under 4 months from start to finish.  It seems to me that it's a worthwhile investment for a future.  I feel lucky compared with many of the patients I met during treatment and I made friends too.  The treatment unit was a cheerful, positive place and I felt looked after.

You might want to get some support from Macmillan or perhaps a Maggie's Centre near your home.  They really know about how this can feel and it helped me when I was diagnosed. 

Good luck with your treatment!

Cecren

Hi

Had results today. Relapsed follicular Lymphoma in the parotid gland which is rare. They dont want to operate as it’s too risky. So it’s radiotherapy unless the PET scan or Marrow test shows further lymphoma then it’s chemo. Onwards and upwards. Just crack on and get it sorted. 

Hi , so a plan is being put together and once all the jigsaw pieces are collected this can go in a positive way.

As you say “Onwards and upwards” x

Hi

can you find out if PDT is suitable for follicular indolent Lymphoma of the face please? I

thanks

Ann

Hi Ann, when you say PDT are you referring to Photodynamic therapy. It can be used on the face but as I am not a medical professional I can’t say if it’s suitable for your condition. Have your team be talking about this?

You could ask for some treatment and refer them to the NICE guidelines.

The treatment I had cleared up some symptoms that I wasn’t sure were related to my condition.

No guarantees though devolution means different areas like Wales, Scotland, Northern Ireland want to do things differently

Usually worse.

Hi Did you have treatment I’m 63 been in wheelchair or scooter many ye ars my Lymp problem both sides of my Aorta

Having terrible pain feels like in my bowels had boiling urine for a while but I’m on watch & wait nobody giving me. Any real information , did you get treatment because I feel dumped as I’m disabled over 60 plan to try again 3 time of asking for second opinion  

Follicular Non Hodkins Lymphoma Stage 2B

means very little to me but over phone I got told I had it in lower  part of my Aorta both sides went see them with breast growth well 1 my eldest daughter saw , no treatment nobody to help not given anybody to talk to been dr 2 times with pain feels like in bowel but there working some days I can hardly move I’m already very disabled life just feels bad I’m happy in myself just Treatment by Dr & oncologist is rubbish no real explanation no real talk no second opinion I have asked for more than once feel rather ignored I sweat so much but I realise that’s normal , just very unhappy at medical system having been ill long time had great treatment from spinal unit & other specialist finding oncologist total waste of time sad really d   

Got no team far as I now ?

Sounds like you got great Oncologist I truly wish you the best mine is not v dry good deffo not on the ball for explaining giving me team to talk to nothing with I had You people sound wonderful  Good Luck truly wishing you the very best 

I would so like to wake up with just my normal disability this is unknown & no explanations of there decisions is making my life so very hard but I will keep living they get it wrong they will get Publicity , that I’m deffo on been keeping record of there not great treatment or explanations , sad I have always had great dr specialists for my Serious spinal I jury , but I will just go emergency in decent hospital soon if there not going to improve there Welsh rubbish behaviour