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.

Latest treatment options relapsed indolent follicular lymphoma

Anniesue
Posted by

Hi

Wondering what latest info is on treatment of Indolent relapsed follicular lymphoma. I now have two lymph nodes in my carotid gland. Any other options other than removal as this is a risky operation. 

johnr
Posted by

Hi and welcome to the site, if this is the first time your fnhl is being treated the are a number of options which your consultant may go through, whether they remove the nodes will be down to the discussion you have, but removing them does not take the disease away, its likely you will still need chemo or immunotherapy.

When do you next see the consultant?  

John 

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

Hi again ....... I think John needs another cup of coffee this morning 

As John highlighted in your FIRST post 

"To second guess the treatment is hard but to give you an idea, it may be they look at a non chemo route and may try rituximab or a combination, radiotherapy may be an option or one of the chemo combinations. A lot may depend on how you are and how much longer they may want to keep you on watch and wait"

It all depends on how your condition is presenting and the best tool to do the job....... others have had Obinutuzumab + CVPR, R-CHOP and a number of other treatments. We also have a few that have been or are going through Stem Cell Transplant........ so lots of tools in the box to move this in a positive way.

Keep talking as I am sure that some of the others will pick up on your posts ((hugs)) 

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Anniesue
Posted by

Hi

i have posted before. This will be a relapse. I wasn’t supposed to get my results until next Weds at the ENT  Consultants but my Haematology Consultant Secretary phoned and said he wanted to see me this Friday. He is very in the ball and has obviously seen the results and is seeing me after his Oncology meeting. I know that broken Lymphoma doesn’t react well to Chemo or Radiotherapy which is why I wondered what other treatments there might be now for this type of Lymphoma. That is assuming it hasn’t turned aggressive. 

Regards

Ann

Anniesue
Posted by

Hi

Thankyou for your reply. Fingers crossed that they are benign. 

Doh
Posted by

You never said what treatment you have had.

In your post or in your profile.

Anniesue
Posted by

Watch and wait

Jenko1979
Posted by

Hi,

I'm assuming therefore that you have not had any physical treatment already?

you mention this is a relapse but I would have thought that would only happen after you have already received one line of chemo or rituximab.

anyway, if you have not had chemo and/or rituximab before then there are some fantastic treatment options out there that can keep the disease at bay for many years.

alternatively they may still keep you on watch and wait if your lymph nodes are not causing any issues.

i finished chemo (bendamustine and Obinutuzumab) back in February this year. I found the treatment bearable and was working 2 weeks out of every 4 throughout my treatment. I’m now on my maintenance treatment for 2 years (one infusion of Obinutuzumab every 8 weeks) which gives me no side effects and I live a more than perfectly normal life now. Hopefully this helps with any concerns you may have.

if my lymphoma relapses I understand that there are still other chemo options that I could try and medicine is also advancing very quickly in this arena with all the new car t and similar types of clinical trials going on as we speak.

Paul 

purrwoman
Posted by

 Hi I was Diagnosed with Follicular 2B Non Hodkins lymphoma in March looks like had it 3 years it’s both sides of my Aorta , ones under my arm at moment to small to register I’m   Terrified 

I am on watch wait I was already seriously disabled before this I fractured vertebrae in my neck in 76 with serious repercussions I am Asthmatic have Osteoporosis  Osteoarthritis  scoliosis , what a mess I live alone after 40 years of marriage I needed to live in peace 

2 and half years I hire private care , but the Cancer has made me wonder why bother going on I’m 63 in a week I just am lost 

help please 

Jenko1979
Posted by

Hi,

sorry to hear about your diagnosis, it’s never a great period of time to hear that kind of news. (I remember it well)

the good news is that this disease is manageable, and in fat the survival rates are around 21 years these days and treatments are tolerable.

i speak from experience, and in fact I was diagnosed at 39 years of age and I still remain hugely positive about my outlook - you should to.

regards

Paul 

Jenko1979
Posted by

Hi,

sorry to hear about your diagnosis, it’s never a great period of time to hear that kind of news. (I remember it well)

the good news is that this disease is manageable, and in fat the survival rates are around 21 years these days and treatments are tolerable.

i speak from experience, and in fact I was diagnosed at 39 years of age and I still remain hugely positive about my outlook - you should to.

regards

Paul 

Cecren
Posted by

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

Anniesue
Posted by

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. 

Thehighlander
Posted by

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

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Anniesue
Posted by

Hi

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

thanks

Ann