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.

CT scan?

BedrockFred
Posted by

I'll second that Peter, stay strong believe in your team 

Fred (Paul)

Together we are stronger

WayneSch
Posted by

Time for treatment,

Thanks guys,  I did get the results back from my CT scan and my oncologist said he'd recommend starting treatment: six once a month treatments of Bendamustine and Rituximab.  I'm 95% on board with the decision.  The CT scan found a significant enlargement of a lymph node in my abdomen (9 cm by 4 cm). Considering for the last 5 years we have been looking at lymph nodes that are just a couple cm this is huge for me, so I was very agreeable.  And my oncologist who seems like a gentle soul didn't seem to be suggesting treatment as much as saying "it's time."  Oddly enough, and this is the majority of my 5% hesitancy, is in the world of waxing and waning lymph node sizes with indolent follicular lymphoma, things are actually shrinking right now.  Up to this point, I had been really worried about two lymph nodes in my neck that had gone from 1 cm to 3 cm.  The day my oncologist told me about the 9 cm lymph node in my abdomen, I said, "I think the nodes in my neck are shrinking."  I wasn't certain, but I thought. Last night I was checking my neck and one of the two is probably half the size, so I feel a bit hesitant about starting treatment when my lymph nodes are shrinking naturally as part of waxing and waning.  Another hesitancy is just how I feel.  I feel great. I never have had a clinical symptom.  I know, I know, you don't always have to wait until you feel terrible, but that is 1% of my hesitancy.  Nonetheless, I went into this thinking to myself I was going to trust the wisdom of my doctors, and I do trust my team, so full steam ahead. 

Wayne

Cecren
Posted by

Hi Wayne,

I'm started on rituximab and bendamustine myself and I feel fine.  I've another session next week.  I was prepared for side effects, but I haven't had any at all apart from an allergic reaction to the Rituximab, quickly fixed.  I've enough energy to get through housework and gardening and a busy social life.  If it continues like this, I shall be delighted.  I spend more time outdoors when I know my immunity is low, in order to avoid infection in crowded places.

The waxing and waning of lymph nodes is a familiar history.  Mine disappeared altogether months ago and haven't reappeared, although a scan shows some slight swelling, I can't feel anything.   It's quite invisible too, because all the disease seems to be concentrated in my hip bone. That is uncomfortable, but otherwise I'd never know there was anything the matter with me at all.  I probably had lymphoma for more than 5 years and didn't know anything about it.   It's sneaky!

It's such a vague disease, but I realise that I need to have whatever treatment it needs.  It won't go away by itself, so I want to get it into remission and get on with normal life. 

I hope you fined yourself comfortable with your treatment and able to get through it with great success!

WayneSch
Posted by

Thanks Cecren, 

I can't tell you how much a comfort it is to see you write that you haven't had any side effects other than the allergic reaction to Rituximab (recognizing that everyone has a slightly different experience of course, but it gives me hope!). Yes, a vague disease.  I like your line, and I'll try reminding myself of it, "I need to have whatever treatment it needs."  Just because I'm feeling fine doesn't mean there isn't a need for treatment.  That is such a hard thing for me to get into my head!  

Thanks for the words of encouragement!

Wayne

Cecren
Posted by

You're most welcome, Wayne!  I've had a lot of wisdom and encouragement here myself.  There's a lot of people with much more experience than me.

It is true about individual responses.  I just speak as I find.  I'm still pretty new to this business too, but they seem to measure our progress in scans (I get one after 12 weeks) and blood tests rather than our lumps. 

My allergic reaction was a sudden snotstorm hay fever attack on the first dose.  So they gave me a good dollop of intravenous Piriton and some hydrocortisone and it just stopped.  Whole thing lasted less than 10 minutes from first sneeze.  Then I fell asleep in the reclining armchair and missed my tea.  They tell me they'll be ready for me next week, so I guess that's more Piriton and another drowsy evening.  So glad I don't have to drive myself in or do the hour long bus journey in and out!  But that's just  the antihistamine response, not the rituximab. 

The bendamustine seems much less dramatic and a lot quicker.  I was only there for about 90 minutes for that and nothing interesting happened. 

The Haematology outpatients share space with oncology and renal dialysis patients in my local hospital.  Some of them look very poorly and I feel a bit of a non-event in comparison.  I feel very safe there though.  The nurses watch and check on you all the time.

Peter1954
Posted by

Hello Wayne,

Personally I'd agree with your oncologist, regardless of the fact your neck ones are getting smaller you have nodes in the upper part of your body and lower, ie either side of your diaphragm, which is the same as me, mine were armpit and groin, so unless they vanish completely, (which I doubt thy will) I'd take the course.

Good luck and if you can enjoy the attention you will receive, doctors and nurses will make you feel good.

Peter

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

WayneSch
Posted by

Thanks Peter and Cecren, 

Cecren, I'm in the same boat.  I live an hour away from the city where I'll get my treatment, but luckily my wife is coming with me, and I suspect will drive me home whether I say I'm sleepy or not. I'm typically the chauffeur, but she's promised to nurse me through this if I need that, and in that way I'm luckier than some.  

Thanks Peter, I think I needed to hear that I'm going down the right road despite being asymptomatic.  I'll lap up the attention

Wayne