Rituximab alone...? Chemo-free thoughts invited.
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Good discussion. I was FNHL Stage IV with bone marrow involvement. My first treatment was R only. One dose a week for 10 weeks then once every 8 weeks for 2+ years. I was NED for 4.5 years from diagnosis - about 2.5 + years after end of treatment. Next treatment for relapse was fludara with Cytoxin followed by 2 doses of R. I then decided to stop R due to a terrible sinus infection. I was NED again. Now I have signs of lymphoma but no signs of growth so I am getting quarterly blood work and annual CT. I try to not write a book here so obviously this is not a detailed post. Happy to answer questions if this is of any interest to someone out there. As for cures there are none. I was told unless something new is developed I would either “die with it or from it but most like with it”. Something eventually gets us all.
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I hear ya. I was diagnosed with grade 1(Endolent) Follicular Lymphoma stage 4. Gastro Dr. Found it while doing a EGD. He found a red area in my duodenum and did a biopsy. 2 weeks later came back the above. I had already had a CT scan right after EGD and they found a 12x8 cm in my abdomen. Started on R along with Treanda for 6 treatments. After the third treatment everything in my neck and chest had resolved and the tumor reduced down to a 4.8x2.5. And 3.1x3.1. The big tumor reduced into 2 small tumors.Everything was doing good until after the sixth treatment and I had another Pet scan and results showed treatment had stopped and the 2 tumors had begun to grow again3.1x6.3 and 4.8x 2.8. So my oncologist said if first line treatment stops working then we have to remove the tumors. Meet with surgeon Thursday. If she can get both then I will just do the R for 17 more months every other month. If not then I will go on R- chop. Probably 6 rounds. I dread it. Did not lose my hair with first round of treatment but I will with R-chop. Husband is very supportive and caring but I’m still scared. Any advice. I’m trying to put it all in God’s hands because I’m not in control he is.
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Teena, just curious if your doc explained why “treatment had stopped” as you stated and your tumors started growing again when it seemed to progress well through the first half of your B&R regimen? Admittedly, a self serving question here as I have essentially the same diagnosis as yours even down to the size of the abdominal tumor mass.
I echo the sentiment here. Good discussion. Thank you all for sharing your thoughts & experiences. Max, thanks for your upbeat and always informative posts.
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Teena, curious if your doc explained why “treatment had stopped” as you stated and your tumors started growing after treatment seemed to progress well through the first half of your B&R regimen? Admittedly, a self serving question here as I have the same diagnosis as yours even down to the size of the abdominal tumor mass.
I echo the sentiment here. Good discussion. Thank you all for sharing your thoughts and experiences. Max, thanks for your upbeat and always informative posts.
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She did say that the medication did all it could do because she said the center of the 2 tumors was probably dead because of no blood flow and the medication could not get to the center and kill the rest of the tumor that is why she wants them removed or as much as the surgeon can get out which we hope she can remove all. If she can then no more chemo and I will just continue with R. If not R-Chop will be on board. Praying for NED.
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Sorry meant to continue..from first treatment I went right through never had nausea or felt ill. I’m hoping that doesn’t mean it’s not working.. I will get a repeat PET scan after next Treatment to see how treatment is working. I have multiple tumors mostly all near bones by upper arm joints, hips, ribs, iliac, scapula.. one thing that has been an issue is my injection of neulasta. The pain I have had after first 2 injections, I never had my entire life. My spine went into contractions, and felt like a knife going through me. Claritin didn’t stop it. Dr had to call in muscle relaxers and oxycodone, second timepressure and contraction feeling was less and only a few hours but few days later did something to lower back, couldn’t move almost 4 days because of the pain. Could not stand, walk or move without unbeatable pain. Took mobic and seemed to just stop on 4th day. Doctor never had someone with this much pain. Order mri, just 2 tumors which we knew there from the PET scan. Had the third injection Saturday, fearing next few days to see what may happen.
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netty, your posts illustrate the importance of getting a second opinion. I did and in my case, it confirmed the opinion of my first visit. Sounds like your are in good hands at MSK. You do seem to have a lot of aches and pain as well as bad reactions to Neulasta. I have had no reactions to the Neulasta injections and have tolerated my B&R chemo regimen well, that is, after getting past the first two cycles. Pulmonary embolism has been my biggest side effect provoked by my lymphoma. Sounds like you are tolerating your chemo treatment well. I doubt having no ill effects doesn’t mean the drugs are not working. I sure hope not. We all react differently. Hope your upcoming scan shows good progress.
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Shady, I was watching OncologyGo the other afternoon, and a researcher/MD was discussing Follicular survivability when using R- CHOP v. B & R. Since I mentioned above that NLPHL is in effect 'cured' 85% of the time, I thought the following would interest you , and some others. He said that long-term followship shows at the ten year point Follicular NHL has freedom from relapse (FFR) right at 70% among all Follicular patients. As such, it seems Follicular does relapse a little more frequently than NLPHL. The data was good for around 2019, best I could gather. I believe he was from Sloan Kettering, but I would prefer to not give doctor names over the web.
max
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He did not mention transformation. Clearly however, NLP and Follicular are closely related. I went to my onc for a six month assessment, regarding the germinal centers issue. I am significantly anemic again, and she is running the usual tests: colonoscopy, etc.
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Max - I hope your PTGC gets resolved without any progression and the cause of anemia is benign and fixable.
Shadyguy - according to our onc, the historical transformation rate of NLPHL to NHL is about 15% at 10 years and 30% at 20 years. The effect of adding R to either ABVD or CHOP for CD20 positive NLPHL (apparently not all NLPHL is CD20 is positive) seems to reduce transformation rate further.
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Thanks CA347. I have FNHL. Dr. Google says the average transformation rate for FNHL over the past 10 years has been 3% per annum and the average survival after transformation is 2 years. 80% of cases that transform shift to DLBCL. The real bad part of it is the FNHL does not go away so the patient has two or more strains of lymphoma at the same time. The other 20% are transformed to other lymphomas including different strains of follicular, NLPHL etc. I know the folly of how statistics are derived and how we are all different. In any case I see it as similar to mileage estimates on the window stickers of new cars - a lot depends on the driver and the speed and terrain/elevation/temperature he/she is driving in. Still it serves as as good a guesstimate as one can get.
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Folks only thing I’d add wrt FNHL survival - remember that 15-20% of patients experience relapse/refractory/transformation within in the first 2 years after diagnosis and front-line. So if you pull those numbers out of the survival rates you can see how high the percentages are for the other 80-85%, ie if 70% are event-free at 15 years, that’s after 15-20% encountered trouble within 2 years, meaning almost all patients who get through the first 2 years without event will make it to 15 or more trouble free, acc to the stats.
Someone pls let me know if I’m thinking about this the wrong way…
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Not sure. But in the same vein age has a lot to do with it. The average FNHL payient is in his/her mid 60s at diagnosis. Odds are good that few people that age, with or without FNHL, will live more than 15 years. Average life expectancy says most are gone by early 80’s regardless of lymphoma status.
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I haven't given histological transformation (HT) any thought until this was brought up in this thread. It's scary.
From reading about it online, I see that in HT cases, roughly 80% of them change from follicular lymphoma to diffuse large B cell lymphoma (DLBCL). Given that DLBCL in itself is even curable in over 60% of the patients, why is the prognosis so poor for transformed DLBCL cases?
Teena, any update on your visit with the doctor regarding surgery?
Max, I hope all the tests will turn out OK for you and your anemia improves.
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I go on the 23rd for Dr. Cannon here in Dothan Alabama to do a biopsy of the tumor in my abdomen using the robot. My oncologist just wants to make sure we are still dealing with grade 1 Follicular Lymphoma stage 4 that was found in my duodenal last October. She wants to make sure she starts me on the right treatment this time. I finished 6 rounds of R&B with good results the first three treatment then it stopped. Unsure why it stopped. The Dr wants to make sure it is not a higher grade.
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