Follicular Lymphoma - Rituxan and Bendamustine

po18guy

Bendamustine + Rituxan is pretty much the gold standard in an increasing number of B-Cell malignancies. It tends to be more effective and less toxic than prior combinations.

I had two simultaneous T-Cell Lymphomas that were multi relapsed. Prior combinations involving 12 anti-neoplastic drugs had failed to keep them in remission. I then received Bendamustine/Treanda in combination with Etoposide and Carboplatin as an experimental regimen. In only two infusions, it erased both stage IV T-Cell Lymphomas and reduced a simultaneous myeloid marrow cancer from 23% of my marrow to only 2.6%, which was considered to be "minimum residual disease." So, it is indeed a powerful agent against various lymphomas.

As well, there are many other potential drug combinations available if one's response to Bendamustine-Rituxan is not as effective as hoped.

archangel724

https://csn.cancer.org/discussion/comment/1722758#Comment_1722758

you’re absolutely right. I researched both drugs b4 starting treatment in beginning of April. They do say Rituximab (Rituxan) is the best breakthrough in the last 10 years & supposedly is effective at preventing recurrence for longer period of time, if on maintenance doses after main cycles, which I assume I will be on after my 6th cycle. I have a PET Scan scheduled for June 20th, between cycles 3 & 4, so in the middle & we’ll see what it shows. I’m just nervous & pretty shocked still at the crazy response my 2nd cycle, 2nd day of Bendamustine, where my heart rate dropped to 46 & portable EKG showed 50! Don’t understand why or if will happen my 3rd cycle the beginning of June. I hope not b/c I do want to stay the course with this regimen & not mess around with diff chemo cuz, like u said, they’re the gold standard & must b for a reason. I’m so sorry for all you’ve been through! Recurrences. We spend our lives with anxiety waiting & hoping it won’t happen, but it seems that it will. Your response was very impressive so I’m happy for that! My Oncologist said all the NHL are a dog we want to send away with its tail between its legs for as long as we can, but he will come bk. Great! I was already told I’m young (49) so I will definitely do battle again at some point in my life. Unfortunately I guess we look to win our battles & pray something earth shattering comes along so we can end the war & the battles can screw off! Thank u so much for taking the time to read & answer my post. I wish u the best & am here with my minimal experience (so far) if u need a good ear! Rachel

ShadyGuy

I generally agree. I do not know when rituximab was developed, but I had it first time 14 years ago so it has been around awhile. I am also not sure if it has been changed or improved in some way. It works! I am still here despite relapses. I had on relapse chemo but not bendamustine. I don’t know if my survival is because of the rituxan but I think it probably is. Rituxan monotherapy is a cake walk compared to any type of chemo including bendamustine.

po18guy

Your condition is indolent, i.e. chronic. That means that you have the blessing of time for even better treatments to arrive. We do not live in a static world and progress is being made as we speak. Recent studies indicate the selective seratonin re-uptake inhibitors (anti-anxiety/anti-depressant) seem to improve responses in B-Cell Lymphomas. Since some of them have a very benign profile, this is encouraging news.

po18guy

ShadyGuy

That mine is indolent is obvious. That means it cannot be cured but can sometimes be managed. I think I had it for years before I was diagnosed near death at stage 4. It was throughout my body with 26% of bone marrow cancerous and around my heart. But it responded well to treatment. I was unable to work so my life changed dramatically.I will either die with it or from it but it is a permanent fixture in my life. Expert care is required. Don’t mess around with GPs. If lymphoma is suspected go to a specialist immediately.

mossback99

https://csn.cancer.org/discussion/comment/1722658#Comment_1722658

Rachel, just curious how was your scan at the end of June? How are you doing?

archangel724

https://csn.cancer.org/discussion/comment/1723728#Comment_1723728

Hi Mossback! Thank u so very much for contacting me, to see how I am. That means the world to me. I pray u are doing well. I pushed my scan to the beginning of July, b/c after that last cycle, I was pretty crappy. Ik Bendamustine is probably pretty tame compared to other chemos(especially the ones I watched my mom & both grandparents suffer thru, different cancers also) but it’s become my nemesis! After every damn cycle, I’ve got neutropenia, so we had tried my going up 6 days in a row for Neupogen injections & the last 2 cycles, they applied the self injector, on my 2nd day of treatment, to inject 27 hrs after, to keep my wbcs out of the critical zone. After the 2 days of Rb plus that burning lil **** on the 3rd day, I’d had enough. Pretty sick n bone pain despite Claritin they told me would help that. Developed neuropathy in my left arm from elbow all the way into my hand. Feels like ice cold, constant stinging pain, numbness & gripping almost impossible. Idk if permanent but b4 they start pumping me with high doses of Gabapentin, we’ll see how it goes.
Anyhoo, I feel very guilty & definitely unworthy to say that my scan showed NED! I’m at a complete loss, so blessed, albeit nervous & in disbelief of how I attained “remission” of Stage 3, Grade 2, follicular lymphoma within only 4 cycles & surgery. This last Wednesday/Thursday I had my 5th.
Now my oncologist is starting me on a “maintenance plan” to supposedly best prevent a recurrence, which I’m very concerned about, b/c it seems to have happened pretty quickly. So now I graduate to only Rituximab, every 2 months, for 2-3 years?! My last 2 cycles I had the Rituximab injected in that Turkey baster in my stomach over like 10-15 mins. Supposedly these treatments will b thru the good old port. They told me to plan on 6 hrs again! So, labs & just immunotherapy every 2 months for 2-3 years.
Have u heard about this very extended situation or any personal experiences? I have to research n see what the thinking is. Originally, we were planning on 6 cycles, praying for remission & then booster treatments every month but for only about a year.
Thank u again so much for thinking of me & reaching out. Praying 🙏🏻 n thinking of u also!

mossback99

First and foremost, a heartfelt congratulations on your NED scan result! Absolutely wonderful and I imagine such a relief! Getting to NED is the whole point of enduring the side effects and everything else- and you have achieved it. It is a shame about the side effects- especially the significant neuropathy. Hopefully with time and healing that will subside. Good luck with your maintenance regimen and I hope you continue to feel better and heal up! Please keep us posted!

Best wishes to you!

ShadyGuy

Archangel

Congrats. I have gone into remission twice and it’s a very good feeling! I have had enough Rituxan to float a battleship. I only had the stomach injection once and hated it. I had the port removed second time and after chemo did R IV every 2 months for almost 3 years. It’s no big deal and is a life saver. Unlike the chemo it doesn’t hurt and for me at least it had no serious side effects. Don’t worry - be happy!

archangel724

https://csn.cancer.org/discussion/comment/1723747#Comment_1723747

Hi Mossback! Thank u so very much for being in my corner, I appreciate it beyond words! I feel absolutely blessed & so thankful, but again, I can’t help being a little leary to have been Stage 3, Grade 2, with spreading after surgery to remove several large mesenteric lymph nodes(my origin site) having tumor show up on my neck/throat nodes, etc. I just am still in shock that only 5 cycles & NED! Also feel a good amt of guilt. Watching everyone come 4 treatments, some very young, new warriors almost every month. Like I said, the neuropathy we’ll watch n wait. Thank u so much again for your support! I’m here for any fellow warriors n survivors to lend an ear or help in any way I possibly can with my limited experience. I will definitely b around! All my best, always

archangel724

Hi Shadyguy! Thank you soo much for your very kind message & reaching out to me. Yep, I sound like I’m definitely following in your footsteps. I’m so sorry u had to go through recurrence 2x! If u don’t mind my asking, were those after the maintenance Rituximab for the 3 years? Not during it right? Like they say, it’s a chronic freaking cancer & we can mostly hope to manage it. I was 49 at this diagnosis & my oncologist very encouragingly said “you’re young, u WILL fight this again”. Great 👍🏻 I’m with u with the injection in your stomach. It definitely sucked. At first I thought it sounded cool, something I previously had over 4-5 hrs , could now go in my gut pretty quickly. You’re right, not a fan! Thank u for reaching out & sharing your experience with me!

mossback99

Rachel, one more question. What do you think you'll do now regarding your port?

archangel724

https://csn.cancer.org/discussion/comment/1724115#Comment_1724115

Hi Mossback!

I’m so sorry for my late response. Was around family, including a coughing n stuffy/runny nose 2 year old & yep, I got sick! Within 2 days! There’s being immunocompromised for ya. As far as my port goes, I’m keeping the damn thing(haven’t liked each other since 2 days after implantation when lidocaine wore off! It’s always hurt n been a general nuisance 🤬) idk if anyone who had Rituximab maintenance for 2 years, like I’m gearing up to start in 2 n 1/2 weeks but I had been able to get Rituximab in that Turkey baster looking bolus needle in my stomach for cycle 3-5 with the Bendamustine. When they scheduled me for labs, Dr & infusion next day..they told me to plan on being there 4-6 hrs! I said huh?! So it seems this maintenance is going to be infused thru port. Idk why. If larger amount that needs to b infused or whats going on. When I do labs n see oncologist day before, I’m definitely going to ask why the change in delivery/route.
How are u doing?? It’s taken a few days to read the messages but what’s happening with u hun? Pretty sure I read u had R-Chop? Did u have relapse or been suffering in silence until now & I didn’t know you’ve been still fighting all this time? You have always been so amazing & supportive to me throughout my newbie experiences & I care very much about u! Please when u have time/strength, let me know how u are. All my thoughts n prayers 🙏🏻❤️

mossback99

Rachel, no need to ever apologize. We're all just living and dealing with all this as best we can.

Understood about the port. I forgot you had mentioned the Rituximab maintenance- so it makes sense to keep the port and have it available as needed. I was asking because I'd like to have mine removed at some point... So I'm just curious to hear from others. Like you, I can feel the thing and I don't particularly like it. But I'm also grateful for how it helps us with treatment- LOL. Such a crazy situation.

I'm doing well- thanks for asking. I'm new to all this, so my case of DLBCL is only a few months old. Noticed the lump in February, diagnosed in June and started treatment last month. Have only had two cycles of R-CHOP so far. And, so far, it has been effective, thankfully. I've been very fortunate. And I've learned a lot from people like you on this and other lymphoma forums. So thank you.

And best wishes to you for your maintenance regime and future health!

archangel724

https://csn.cancer.org/discussion/comment/1724208#Comment_1724208

Ik how u feel! My port actually hurts! But everyone says it’s properly positioned & works well so, I feel like an idiot. I DEFINITELY want mine removed but better wait & see how the maintenance goes. Watch, I’ll go thru 2 yrs of maintenance, they’ll tell me still NED, we remove it & it recurs! That’d b my luck. I’m so glad your treatment is effective. That’s a tough one. Idk how I could’ve helped, unfortunately I’m a newbie only diagnosed in Feb & treatment started beginning of April. I’m very blessed too but live with constant anxiety of recurrence. A lot of the great people here have dealt with it, my oncologist pretty much guarantees I’ll actively fight it again(just what u want them to tell u!) cuz I’m supposedly young (just turned 50). Thank YOU so much for all of your support & insights.
Please keep me updated. U had 2 cycles of R-CHOP, how many does your Dr say u need? Mine was supposed to b 6 but I did 5. I am praying for continued success & remission for u!