Do Retuxin + Bendamustine side effects intensify with treatments?

BeachBum23

Max Former Hodgkins Stage 3

Folly Beach Beatnick

Beach Bum,

I grew up near the beaches of Charleston, SC -- especially Folly, which is the most "Bohemian" beach in the state: sawdust-floored oyster bars, etc.

I did not use your exact meds, having used R-ABVD for six months instead, but R-ABVD does share the Rituxan with your B & R.   And because Bendamustine is a "conventional" chemo, meaning that it is a cytotoxic alkalyning agent, and works like many other cytotoxic (tumor-killing) drugs, I can speak in generalizations.

Yes, the more chemo a person gets, usually, the worse the side-effects. Most people indeed note that side-effects worsenen with more dosage.  This is more true in people who get a LOT of drugs over longer time frames; people who do a little chemo for a short period, less so.

The worsening will come much more from the Bendamustine than the Rituxan.  If you go on maintenance Rituxan for a long period after Bendamustine ends (a very common thing), the effects will be less.  Rituxan is not a "conventional" chemo, but rather what is called a "monoclonal antibody."  It is also used against inflammatory arthritis on patients with no cancer.  

Rituxan can cause joint and musclle pain, and symptoms that feel like a cold for some people, but these are usually not too dibilitating.

So a best-guess is that yes, you will feel weaker through the remaining B & R, but thereafter, things should mitigate.  If you do NOT take Rituxan for maintenance, you will begin to regain strength after a month or two.

Let me stress: These are generalities; what most people report. Specific cases often differ a lot from what I have described here.

I hope you feel better soon,

max

http://chemocare.com/chemotherapy/drug-info/bendamustine.aspx

Be aware that Rituxan goes by three or four different names in the medical community:

RITUXAN:  http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

.

BeachBum23

Thanks

Thanks, Max!

I really appreciate you taking the time to respond so thoughtfully. Even generalities are helpful as I continue to discover how I respond to my treatment. 

lindary

intensity

I agree with everything Max said. A co-worker who is a breast cancer survivor warned me that the effects of the drugs would get stronger with each treatment cycle.  It is not just chemo drugs that does that. I am on blood pressure & thyroid meds. When started or the dosage is changed the effect is not immediate. It can take a week or more for the new dosage level to kick in. The only difference is the chemo is killing part of our system with the goal of fighting the cancer. 

I am now on Rituxan maintenance and keep a bottle of Tylenol handy for the first few days after a treatment. Best I can recommend is keep notes on what happens during the treatment cycle. Then use that first list to create a schedule allowing for the expected good days and bad days. That helped me get through it all. 

Good luck Beach Bum.

PeprmntPat55

R & B Treatment

Beach Bum ( I love your name!)  I was also recentlly diagnosed (August this year) but with Follicular Lymphoma, Grade 1 Stage 3B.  Oncologist started me on Rituxan and Bendamustine right away but I'm on a 21 day cycle for 6 cycles.  The Rituxan and Benda on Day 1,this takes most of the day. Day 2 is Benda only. This infusion takes just about 20 minutes but I'm there for about an hour.  

Side Effects:  I also noticed that the first week after treatment is the same as you described.  Then towards the end of my 21 days I'm feeling so good that it's pretty amazing.  I have only had 2 cycles thus far. I was scheduled this week for #3 but my Neutrophils (sp?) were too low at 1.1.  I am scheduled for next Tues/Wed and hope that number is up.  

I have managed to work through treatment missing only my infusion days and one or two others.  Next week I am planning to go to work the day after Rituxan so i scheduled my chemo for 2:30pm.   We will see how it goes!  

I did finally get a Bard Power point as my veins did not last even through the second treatment.  I have gotten used to the port and while I am aware that "it's there" it is no longer painful.  No more arm sticks!  Yay!  

Lastly,  I completely understand what you mean about not yet wrapping my head around this cancer diagnosis.  Maybe because I feel so good and I've not lost my hair?  But I'm ok with that because I think the reality of the situation will come soon enough.  

I wish you the best and please send updates as you continue?  

PP55

dana-mihaela

Hi All

I was diagnosed with marginal zone lymphoma as well like you not splenic but my tumor was on the pelvic area. I got to have 5 rounds of R-CHOP which is a stronger chemo than yours every 21 days. You have only one chemo drug Bendamustine since Rituxan is not a chemo drug but indeed once you get to the 5 or 6 infusions there are cumulative effects of the drugs. The first week after infusion was always the worst for me specially after I finished taking Prednisone that comes with R-CHOP. Week 2 and 3 were a lot better with more energy. There is also the mental componenet once you know that you are almost done towards the end of the rounds you feel like it never finishes. Now I am waiting for the hair to grow. I think with your treatment you do not lose your hair correct?

Hope you go over it with as little side effects as possible.

Good luck!

Dana

BeachBum23

PeprmntPat55 said:

R & B Treatment

Beach Bum ( I love your name!)  I was also recentlly diagnosed (August this year) but with Follicular Lymphoma, Grade 1 Stage 3B.  Oncologist started me on Rituxan and Bendamustine right away but I'm on a 21 day cycle for 6 cycles.  The Rituxan and Benda on Day 1,this takes most of the day. Day 2 is Benda only. This infusion takes just about 20 minutes but I'm there for about an hour.  

Side Effects:  I also noticed that the first week after treatment is the same as you described.  Then towards the end of my 21 days I'm feeling so good that it's pretty amazing.  I have only had 2 cycles thus far. I was scheduled this week for #3 but my Neutrophils (sp?) were too low at 1.1.  I am scheduled for next Tues/Wed and hope that number is up.  

I have managed to work through treatment missing only my infusion days and one or two others.  Next week I am planning to go to work the day after Rituxan so i scheduled my chemo for 2:30pm.   We will see how it goes!  

I did finally get a Bard Power point as my veins did not last even through the second treatment.  I have gotten used to the port and while I am aware that "it's there" it is no longer painful.  No more arm sticks!  Yay!  

Lastly,  I completely understand what you mean about not yet wrapping my head around this cancer diagnosis.  Maybe because I feel so good and I've not lost my hair?  But I'm ok with that because I think the reality of the situation will come soon enough.  

I wish you the best and please send updates as you continue?  

PP55

Hi PP55! 

Hi PP55! 

I hope your treatment is continuing to go well and that your levels have been high enough for treatment. I just finished my 4th round this week. I typically miss work on my long infusion day and one or two others as well. I've had a lot of my hair shed, which I hate, but my friends tell me it's not noticeable at all. I'm glad it's not obvious, but sometimes it makes me feel crazy. In general people are surprised by how good I look (not looking sick) and since I still have my hair, it makes it all feel so surreal. Maybe I'll get my brain wrapped around it once the chemo treatments are finished?! Even two more cycles to go feels endless, but hopefully I'll be looking back on all of this soon. 

Best of luck with your treatment! I hope your 2:30p plan worked well!

BB

BeachBum23

dana-mihaela said:

Hi All

I was diagnosed with marginal zone lymphoma as well like you not splenic but my tumor was on the pelvic area. I got to have 5 rounds of R-CHOP which is a stronger chemo than yours every 21 days. You have only one chemo drug Bendamustine since Rituxan is not a chemo drug but indeed once you get to the 5 or 6 infusions there are cumulative effects of the drugs. The first week after infusion was always the worst for me specially after I finished taking Prednisone that comes with R-CHOP. Week 2 and 3 were a lot better with more energy. There is also the mental componenet once you know that you are almost done towards the end of the rounds you feel like it never finishes. Now I am waiting for the hair to grow. I think with your treatment you do not lose your hair correct?

Hope you go over it with as little side effects as possible.

Good luck!

Dana

Hi Dana,

Hi Dana,

You are correct, I won't lose my hair. I have had significant shedding, which I am very aware of, but others can't tell. Thanks for the response! I don't know anyone else who has been through this, so it's really helpful to hear from others who have had similar experiences. Glad you made it through all your rounds and hope your hair is coming back.

BB

BeachBum23

lindary said:

intensity

I agree with everything Max said. A co-worker who is a breast cancer survivor warned me that the effects of the drugs would get stronger with each treatment cycle.  It is not just chemo drugs that does that. I am on blood pressure & thyroid meds. When started or the dosage is changed the effect is not immediate. It can take a week or more for the new dosage level to kick in. The only difference is the chemo is killing part of our system with the goal of fighting the cancer. 

I am now on Rituxan maintenance and keep a bottle of Tylenol handy for the first few days after a treatment. Best I can recommend is keep notes on what happens during the treatment cycle. Then use that first list to create a schedule allowing for the expected good days and bad days. That helped me get through it all. 

Good luck Beach Bum.

Thank you for the advice! I

Thank you for the advice! I started making notes about my side effects and it's helped me manage each treatment week a bit better.

lindary

BeachBum23 said:

Hi Dana,

Hi Dana,

You are correct, I won't lose my hair. I have had significant shedding, which I am very aware of, but others can't tell. Thanks for the response! I don't know anyone else who has been through this, so it's really helpful to hear from others who have had similar experiences. Glad you made it through all your rounds and hope your hair is coming back.

BB

Hair

My hair started coming out just before my second round of R-Chop. Within a few days it was pretty much gone.  For as fast as it went it is taking forever to grow back. Best wishes to you. 

flamingo6

Hey ya'll,

About to schedule my therapy for Follicular Lymphoma. I wonder if anyone could talk about the actual side effects you encountered and their intensity for day 1 (Rituximab/Bendamustine) and day 2 (Bendamustine). I guess I'd like to know how bad the side effects are and what they entail. It sounds like mainly the days of the treatment are the worst, then they gradually subside...

Also, since I've jumped into this stream 6 months after the last post, how are you all doin?

Thanks,

Flamingo

po18guy

Keep the goal in mind

Fear the cancer more than the chemo! The chemo can be dose-adjusted, stopped and re-started if necessary - even changed out for another regimen. Cancer has no such limitation. There are often infusion reactions to Rituxan - like an allegic reaction. Benadryl is ued to control it. It can subside with time. Bendamustine is a standard chemotherapy drug and its effects will be cumulative. It is impossible to say precisely how your body will respond to it. Doctor or nurse should have advised you of the common side effects, or you can just check Wiki. However, there are far worse regimens out there, many of us have received them, and we have all survived.

illead

Benda/ rit

My husband Bill was also on Bendamustine/rituxan (21day/6 cycle).  He was only given 3/4 dose since he was in bad shape when he started but rallied so well that his onc said why rock the boat and increase when the lower dose is doing the trick?  That may have been the reason Bill never had a bad reaction from B or R.  The only thing was that about the 3rd day after his infusion, he would get very tired and take a 3 or 4 hour nap then he was fine again.   I know it is different for everyone but it was very easy for Bill. 

Hoping things go well for you,

Becky

ShadyGuy

B + R

I can only comment on the R part. My initial therapy for stage IV FNHL was a high dose of Rituxan once per week for 8 weeks followed by one dose every 8 weeks for 2 1/2 years. It seemed to work wonderfully. I went to MD Anderson for follow up second opinion and had NED. Wonderful but ...... my case was unusual. I had tumors around my aorta which were surgically treated - worst part of the whole experience. There were medical mistakes - "nicking" of my aorta and liver Resulting in liver damage and severe bleeding. Scary. Medical mistakes are the third leading cause of death. But hey - these things happen and I had a great surgeon.

1st dose was memorable. About 2 hours in everything started getting blurry. At first I thought it was the percocet and Benadryl. Then I blacked out and was resuscitated by a rescue team from the adjoining hospital. The Rituxan was started again at a lower dose. That first infusion took 10 hours. Good news - after that my next 25 infusions were uneventful, even boring. It seems that my allergic reaction on the first dose was unusual in its severity but many people have a reaction on first dose. Mine was perhaps severe because I was recovering from surgery I had 2 months early.

i suffered knee and leg pains which went away after the treatments ended. My fingernails also went weird and I developed severe ctaracts but those two things are probably not related to rituxan.  Rituxan is truly a miracle to which I owe my life. I have new symptoms and other cancer issues but they probably are unrelated to Rituxan.

good luck!