New to forum, in middle of FL treatment, need perspectives please

SCTridash

Hi folks. Looking for perspectives or experiences from others. I was diagnosed with FL Grade IIIA in Feb, 58 years old, picked up on a routine abdominal US scan. Asymptomatic other than a swollen jaw node in Dec that went away after 3 weeks. Total of 5-6 nodal clusters throughout the torso, the main ones in middle of gut and under arm, the largest of them 2.5-3 cm across. Had neuro-endocrine cancer and a lung removed at age 33, the FL is unrelated – just a 25^th anniversary gift … 

 

Started 6 courses of R-B in Feb. Had my mid-point PET-CT scan this week. Results are “complete metabolic response.” The larger nodes have shrunk by >half and rate as Lugano 2 with sub-threshold SUV readings, all the rest Lugano 1 or “resolved.” Will finish the course of treatments in July.

 

Questions for anyone with a view please:

 

1)    Would appreciate views on whether or how long it takes to get back to normal athletic activity. I bike, jog, swim, and do sprint triathlons. My last race was 4 weeks before my diagnosis. Does the R-B treatment permanently impair the cardio-vascular potential or does anyone have experience training back to the level where they were?

 

2)    I’ve read posts of people going through R + chemo saying you feel fluish for a few days end of week one but then bounce back pretty quickly after that. Mine feels worse. After the IV drip on Mon-Tues, I get hit by a train at the weekend, then wiped out the second week when I struggle to get off the sofa, then a slow recovery starting end of that week when I usually can attempt my first brisk walk or moderate bike ride on the trainer. We’re all different. Just trying to gauge the impact versus the average. R-B isn’t supposed to be a particularly aggressive treatment.

 

3)    The mind is already jumping ahead to the next steps – what will the maintenance treatment be like, what’s the risk the FL relapses within that critical first 30 months, etc etc. I’ve been avoiding too many Google searches, but the few times I’ve looked the only views one can find is that relapse during the first 30 months means doom. Any counterpoints or suggestions for keeping the mind OFF that concern and focused on more constructive aspects would be helpful!

 

 

Thanks and looking forward to sharing.

PBL

Lovely 25th anniversary gift!...

Hi Scott, and welcome to the club.

I believe your questions are best asked to your hematologist and medical team at large, as they will be able to answer them specifically as regards your individual case.

Just for perspective, we are about the same age: I was diagnosed with FL at 52 in early 2016. I was treated with R-CHOP, so will not comment on Bendamustine beyond saying that although it may not be considered "harsh", it still is derived from mustard gas - that chemical weapon that has killed so many during WWI and since then. So, when it comes to chemotherapy, "mild" can be taken with a grain of salt... 

With respect to your comment on potential early relapse, again, discuss that with your hematologist for reassurance. I would only point out that having already achieved complete metabolic response halfway through treatment is an excellent sign, and should give you great hopes of having a long remission thereafter.

Maintenance, if it is the same as mine - and I assume it will be - consists in repeating Rituximab (either infusion or subcutaneous form) every eight weeks for two years. If you are interested in finding out in more detail about the benefits, which are essentially consolidating and prolonging the remission, look up the PRIMA study results (here: https://ascopubs.org/doi/10.1200/JCO.19.01073). 

I hope this answers some of your questions. I am sure others who have been treated with R-B will show up shortly for more specific answers.

PBL

SCTridash

PBL said:

Lovely 25th anniversary gift!...

Hi Scott, and welcome to the club.

I believe your questions are best asked to your hematologist and medical team at large, as they will be able to answer them specifically as regards your individual case.

Just for perspective, we are about the same age: I was diagnosed with FL at 52 in early 2016. I was treated with R-CHOP, so will not comment on Bendamustine beyond saying that although it may not be considered "harsh", it still is derived from mustard gas - that chemical weapon that has killed so many during WWI and since then. So, when it comes to chemotherapy, "mild" can be taken with a grain of salt... 

With respect to your comment on potential early relapse, again, discuss that with your hematologist for reassurance. I would only point out that having already achieved complete metabolic response halfway through treatment is an excellent sign, and should give you great hopes of having a long remission thereafter.

Maintenance, if it is the same as mine - and I assume it will be - consists in repeating Rituximab (either infusion or subcutaneous form) every eight weeks for two years. If you are interested in finding out in more detail about the benefits, which are essentially consolidating and prolonging the remission, look up the PRIMA study results (here: https://ascopubs.org/doi/10.1200/JCO.19.01073). 

I hope this answers some of your questions. I am sure others who have been treated with R-B will show up shortly for more specific answers.

PBL

Thanks PBL

Very useful and thanks for the plugs. Hadn't seen the PRIMA study so will have a look. Congrats on your progress so far and hope it keeps going well - that provides good motivation! 

tgyphilly

R-B

Sounds like you had a worse time with R-B than most.  Like you said, every person will have a different reaction.   I just came off four R-B cycles and didn't have a particularly tough time with it...light nausea and some fatigue.  I think the Neulasta hit me harder than the R-B.  And, my non-chalance with R-B is probably colored by my ABVD treatments, which sucked 20x worse.   

I am currently not doing Rituximab maintenance, but was on it from 2018-2019, every three months.  I didn't have any issues with it... just the pre-shot Benadryl made me tired the rest of the day.  And I did switch mid-stream to the sub-cutaneous Rituximab shot instead of the infusion, which I highly recommend.  Because infusion.  : ) 

My guess is that the R will not slow you down in terms of training/physical activity and the Bendamustine will be just a bad memory.  Good luck staying clear!  

SCTridash

tgyphilly said:

R-B

Sounds like you had a worse time with R-B than most.  Like you said, every person will have a different reaction.   I just came off four R-B cycles and didn't have a particularly tough time with it...light nausea and some fatigue.  I think the Neulasta hit me harder than the R-B.  And, my non-chalance with R-B is probably colored by my ABVD treatments, which sucked 20x worse.   

I am currently not doing Rituximab maintenance, but was on it from 2018-2019, every three months.  I didn't have any issues with it... just the pre-shot Benadryl made me tired the rest of the day.  And I did switch mid-stream to the sub-cutaneous Rituximab shot instead of the infusion, which I highly recommend.  Because infusion.  : ) 

My guess is that the R will not slow you down in terms of training/physical activity and the Bendamustine will be just a bad memory.  Good luck staying clear!  

Thanks this is helpful - best

Thanks this is helpful - best wishes to you as well!

Max Former Hodgkins Stage 3

New Normal

SC,

Concise thoughts regarding your three questions.

1.  You may never return to your pre-chemo state of fitness.   The range of response times is therefore anywhere between a few months post-treatment, to never.  R & B shouldn't adversely damage the cv system, since it contains neither Bleomycin (a drug in ABVD that routinely causes lung toxicity or worse) or Adriamycin (aka Rubex; a drug present both with ABVD, CHOP, or EPOCH), which can induce a condition similiar to congestive heart failure, up to 15 years post-reception.   You also did not receive Vinblastine or Vincristine, which should spare you from neuropathy;

2.  R & B became, as you seem to know, popular for FL as a less toxic first-line therapy, with fewer side-effect than CHOP or ABVD.   But Bendamustine is itself often no walk in the park; it is a refinment of mustargen alkalyning agents.  Mustargen was the first-ever chemotherapy drug, beginning use in 1942, so the roots of Bendamustine go way back.

3.  There is no magic '30 Month relapse' matrix.  What doctors know is that earlier relapses are worse, later relapses somewhat better.  This is true of every cancer known to medicine.   But, a relapse at 5 months remains potentially more easily reversed than a relapse at 15 years; there is simply no way to know or predict.   Do not fixate of Googlistic Truths, since such truths do not exist.

FL is the first cousin to what I had, NLPHL. As indolent lymphomas, they are much given to relapse.  But MOST FL patients NEVER relapse.  The same with NLPHL, which relapses among all NLPHL patients at 15%.  That means that 85% NEVER relapse, a pretty nice sounding figure to me.   Plan on being in the 85% group rather than the 15%.  The stats are certainly with you,

SCTridash

Max Former Hodgkins Stage 3 said:

New Normal

SC,

Concise thoughts regarding your three questions.

1.  You may never return to your pre-chemo state of fitness.   The range of response times is therefore anywhere between a few months post-treatment, to never.  R & B shouldn't adversely damage the cv system, since it contains neither Bleomycin (a drug in ABVD that routinely causes lung toxicity or worse) or Adriamycin (aka Rubex; a drug present both with ABVD, CHOP, or EPOCH), which can induce a condition similiar to congestive heart failure, up to 15 years post-reception.   You also did not receive Vinblastine or Vincristine, which should spare you from neuropathy;

2.  R & B became, as you seem to know, popular for FL as a less toxic first-line therapy, with fewer side-effect than CHOP or ABVD.   But Bendamustine is itself often no walk in the park; it is a refinment of mustargen alkalyning agents.  Mustargen was the first-ever chemotherapy drug, beginning use in 1942, so the roots of Bendamustine go way back.

3.  There is no magic '30 Month relapse' matrix.  What doctors know is that earlier relapses are worse, later relapses somewhat better.  This is true of every cancer known to medicine.   But, a relapse at 5 months remains potentially more easily reversed than a relapse at 15 years; there is simply no way to know or predict.   Do not fixate of Googlistic Truths, since such truths do not exist.

FL is the first cousin to what I had, NLPHL. As indolent lymphomas, they are much given to relapse.  But MOST FL patients NEVER relapse.  The same with NLPHL, which relapses among all NLPHL patients at 15%.  That means that 85% NEVER relapse, a pretty nice sounding figure to me.   Plan on being in the 85% group rather than the 15%.  The stats are certainly with you,

Thanks Max for the inputs.

Thanks Max for the inputs. Practical views are very helpful for cutting through alot of the crap that comes up at the top of the Google algos.

 

Just finished treatments Round 4, spoke to oncologist this morning. She's pretty optimistic my blood counts will bounce back pretty much to where they were before we started, once we're a couple months beyond the end of treatment. For maintenance she's already thinking the R-mab once every 3 months.

 

Thanks again

 

Marcy16

follicular lymphoma

Hi, I was diagnosed with FL about 3 years ago, was on watch and wait for a while, disease did progress and started treatment in January of 2021. I have finished the Bendeka but am going to have maintenance for two years of Retuxan. My last scan done about halfway through the treatment was very good, no evidence of disease at all as far as the size of the lymph nodes are concerned. My question is, has or does anyone have stomach pain or issues with their stomach at this point? I am terrified that it is already coming back. I am going to do a colonoscopy and an uper gi biopsy, while I am having an endoscopy. Does anyone have any advice about what might help with the pain and throwing up? There have been no swollen nodes at all anywhere but in the groin. Thanks.

po18guy

So sorry to hear this

But, having said that,

1. We are now "cancer olympians" and it is very unlikely that we will be as we were before. Possible? Certainly. I look at it this way: I do not want to go back or get back to my old life. Why? Well, my old life had cancer in its future. Rather, I pick up the pieces daily and move on, knowing that I must be alive to have complaints.

2. Everyone is hit differently. Age has something to do with it as well as overall health. But then again, not! Sad to say, it is what it is. Just be consoled with the fact that it will be over relatively soon. 

3. You have a new lease on life. The terms of the lease have changed. Make the best of living that lease daily. I find that I worried so much about future this and future that, that I lwas losing the only thing that I truly possessed: today! Those "One Day At A Time" bumper stickers take on a whole new meaning.

lindary

after treatment

I did 2 years of Rituxan after my lymphoma treatments. My one sister-in-law(also a cancer survivor) said to think of it as a SPA day. Get to sit there and be taken care of. I did end up enjoying those days. I had stomach problms before the cancer in the form of IBS. I was very concerned about my gut during the treatments but my oncologist said as long as I started the anti nausea pills the night before treatment I should be ok. and I was. Like others have said, life after cancer may not be like it was before. I say enjoy the changes. They are an oppotunity for new experiences.