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Long term effects of having FNHL treated with Treanda / Rituxin

rcw7290
Posts: 1
Joined: Sep 2017

My FNHL has been in remission for about 1.5 years. I went through Treanda/Rituxin treatment for about a 6+ month time span.  When I was first diagnosed it seemed to happen so quickly!  Everything was being scheduled and I was being taken this way and that.  It was kind of overwhelming but at the same time, it was comforting to know that my doctor was really on top of things and knew what she was doing.   However, looking back, I don't think I really knew what was going on, I just did what I was told because I wanted to feel better. Now, I'm at a stage in my remission that leaves me wondering if I'm ever going to "feel like me again"?  Even after a year and a half, I can't seem to get my energy back. It seems I'm always exhausted. And if I'm not exhausted, it doesn't take much to push me to that point. Also, my joints and back continue to keep me in pain. I am hoping that someone can relate to how I'm feeling. I'm starting to wonder if this is going to be my new "normal" or if there is something else going on. Any advice would be welcomed. I'm thinking I can't be the only one who seems to be having these lasting side effects. Please respond.

po18guy
Posts: 989
Joined: Nov 2011

And your marrow was damaged by treatment. It takes time to recover, and recovery may never be complete. The problem with this is that we are aging as all of this is occurring - which does not help. Marrow problems and aging go hand-in-hand. Your blood stem cells are produced in the marrow, and they mature to help support our entire body. If they are damaged, or if their numbers are low, then we must simply be patient, hoping while knowing that our marrow may not recover as fully as we expect.

I have a somewhat unique philosophy on all of this. 1. You have to be alive to have complaints. 2. You do not want to go "back to your old life." Why? What did that old life have in its future? Cancer. No reruns here! 3. I do not lament that life is not fair. If life was fair, everyone would have cancer, not just the few of us. I am delighted that life is unfair, as those I love are cancer free. 4. We who have cancer will receive the strength to get through this. We need not know from where it comes - only that we receive it for the asking. 

I think it healthy to re-evaluate ourselves, give thanks for being alive, pick up the pieces and move forward with what we have left. We are not 18 any more - and we can be thankfull for that. Life is not a given. Life is precious. Life is fragile. We still possess it, thus we should try to embrace this new life and enjoy it with a depth and fervor that were lacking before. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3255
Joined: May 2012

rcw,

I agree with most of what Po writes here, easily 90% or more. But never more than when he writes such as he did in paragraph 2 above.

I was mutilated and crushed in a car crash years ago, at the relatively young age of 30. Rehab took nearly 2 years. But "normal" never came back. Decades later, Lymphoma and harsh treatments. Then prostate cancer and serious surgery.  I have become "disease free" from these, but never "well."  This stuff, like the aging itself, is all cumulative; it all compounds.  I am seriously impared and stay weak and tired, but wake up to the new day each day. I have my clarity of mind and study.  I would never go back either, and would begin any necessary new treatments tomorrow if required.

I have two rhetorical thoughts that I share when discussing this that somewhat tie with Po's comments. One is I'd rather have side-effects than have cancer.  Absolutely.  And the second is What is 'quality of life' if you're dead ?

It is reasonable and normal for you to want to spring back 100% to your pre-cancerous state.  But very often, that does not occur.

max

lindary's picture
lindary
Posts: 633
Joined: Mar 2015

RCW - I did 6 cycles of R-Chop followed by 3 of RICE. I am about to finish my 2 years of Rituxan maintenance. I have been in remission about 21 months. The RICE knocked my blood counts to the basement and they have barely made it up half of the steps to get out of there. As a result I celebrate the days I don't feel tired. I've done a look of reading to find things that may help me feel less tired.  After talking with my primary Dr I added B12 & B6 to my supplements. It has helped some. 

Many recommend exercise but when you don't feel like moving even walking takes a lot of effort. fortunately I have a daughter who is a massage therapist (but doesn't live nearby). She recommended massages which I have done. The person I see does have training is working with cancer survivors. They have worked out a lot of muscle knots (probably from sitting too much). There is also a lymphatic massage that is very gentle and helps fluid to flow in that system. Since I still work it means that for 5 days a week I do have a schedule for getting up in the morning and going to bed at night. 

Like PO said, we are not 18 any more but we are alive. Some days I feel like I can run and other days I just put one foot in front of the other. 

 

po18guy
Posts: 989
Joined: Nov 2011

Posted at the Leukemia & Lymphoma Society website.

https://communityview.lls.org/articles/long-term-outcomes-for-non-hodgkin-lymphoma-patients-treated-with-bendamustine?confirmation_token=68a48b1389accd92522485c6f5c9210a&utm_campaign=weekly_group_activity_summary_mailer&utm_medium=email&utm_source=production

PeprmntPat55's picture
PeprmntPat55
Posts: 54
Joined: Aug 2016

Thank you for the link, Po18guy.  I just read it and I was encouraged.  Needed that today. Have a great one!

P

PeprmntPat55's picture
PeprmntPat55
Posts: 54
Joined: Aug 2016

Hello RCW.   

I feel your pain. Literally.  I did the same treatment for FNL, R & B. Now in maintenance every 3 mos Rituxan only.  Last R & B was the end of January this year.  Am so happy for remission and for the drugs that got me here.  What would I have done differently?  Nothing. My onco had stats that were pretty impressive.  

I struggle with pain all over and lack of energy. I tend to beat myself up because i used to be so active, always exercising at the gym.  Now I feel realy good about myself if I take a walk and not even a fast paced one.    I hope you are encouraged and stay positive!  

cdnjenny
Posts: 1
Joined: Jul 2018

I had to take Rituxin (in combo & then as maintenance) from 2009-2012.  Lymphoma was my first real health problem, like ever. I was also really physically active.  Since 2012, I've had persistant and severe sinusitis, bronchitis, joint pain and swelling.  That is my baseline.  I also get every single virus and infection.  My crp levels are through the roof, which is not a great sign for any future "episodes" that may arise in the futre.  That said, I have some windows where I am able to exercise, the cough is mild and I feel relatively good.  I feel these are side effects from the rituximab, which I had a very severe reaction to, but am having a hard time finding any studies that even look at how many people are affected by this. 

For the majority of people, the side effects seem to go away once they stop taking Rituxin.  I just want to know when all this is going to stop ... :/ Nobody wants to hear about it the possibility that it all is related to rituximab, but I keep getting sick and no one really has any idea why this happens or why my crp levels are through the earlth... Is there anyone else out there who has had a similar experience??

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

I am not a religious person but still am thankful for Rituxan. After I was diagnosed in October 2011 I had R-only therapy for FNHL. No chemo for a very complex set of reasons which I won’t go into. Though the odds were against it, 26 infusions gave me a 5-year remission. When I relapsed earlier this year I was given chemo (Fludarabine, Cytoxan) + Rituxan. I will be receiving Rituxan infusion #31 in August and my Doc says probably every 8 weeks for life. The longterm effects of Rituxan for me include 1). Longer life 2). years of travel and adventure 3). 5 grandchildren I would not have not otherwise known 4). hundreds of cups of morning Coffee on the front porch. That’s enough reason for me to take it! The side effects of not taking it would most likely have included death. Yeah Rituxan! Not perfect but a blessing all the same.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3255
Joined: May 2012

cdnjenny,

Sorry your having these long-term issues with the Rituxan.  I did 12 infusions of it over six months, but since it was in conjunction with four other chemos, there is no way for me to know which of my misery elements were specifically from the Rituxan.  It is ironic to me that many Rituxan users report the emergence of joint pain, since Rituxan is also a second-line drug for treating Rheumatoid arthritis ("RA"), which of course is caused by inflamed joints.  Then, the commercial warning on TV for RA users of Rituxan says it may cause them to develop lymphoma.  So, an anti-lymphoma drug might cause people to get lymphoma, and an RA drug may cause people to get RA symptoms (if not true RA).  In the anti-depressant world, the same thing:  Most SSRI anti-depressant drugs have Black Box warnings, that the anti-depressant may cause...severe depression, and even suicide.

But anyway, the most common Rituxan side-effects are respriatory trac (runny nose, cough, colds), and joint pain, so your experience is pretty common.

Go to the Rituxan drug website  (Rituxan.com), where all of your questions are answered. It is a long and highly technical site, but everything is addressed there.  The menu allows you to read on a "Patient" side, or on the "Doctor's" side.  Obviously, the Doctor side (which anyone can open) is a lot more detailed and technical.   You have to "wander around" a lot, and open many, many submenus, but it a truly huge resource.

It also lists all current long-term studies of Rituxan side-effects: what percentages of patients get them, what they get, etc.  ALL drugs in existence have side-effects: Even Advil can cause nausea and eventual liver damage. Asprin can cause stomach ulcers and other problems.  There is no free lunch in the medical world.

A wise fellow used to write here often:  ya gotta be alive to have side-effects.   

max

 

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

the ad says “other symptoms including lymphoma have occurred” without actually saying Rituxan actually causes/caused lymphoma. In any study group random illnesses or diseases occur unrelated to the drug being tested. Its a matter of statistics. For legal reasons they have to mention this.

Evarista
Posts: 253
Joined: May 2017

Anything that diminishes the efficacy of your immune systems can put you at risk of lymphoma or other cancers.  But this is due to lack of effective "immune surveillance", and not "caused by" the Rituxan per se.  This may be splitting hairs or semantics, but I do think it is an important distinction.

In contrast, something like radiation or a toxic chemical can damage DNA and therefore be directly responible for a malignancy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3255
Joined: May 2012

Post hoc, ergo propter hoc: "after this, therefore because of this"  One of the most common fallacies in ancient or modern times. 

The real issue is not between cause or effect, but rather whether an agent constitutes a logical necessary or a sufficient condition. But I digress.

"I got ovarian cancer after using baby powder. Therefore, Johnson and Johnson owes me millions." Although courts recently awarded a few billion to patients, the manufacturerstill contends that no causal proof was forwarded.

Of course Rituan uses grammatical passive voice in their warnings.  In the minds of all viewers, Rituxan will be viewed as the culprit.

Harisplitting ? Hell , most people can't even see a hair in a beauty college.    As Robert Frost observed in a poem about people going to the beach and starring at the sea all day:

They cannot look out far.  They cannot look in deep
But when was ever that a bar to any watch they'd keep ?

https://www.allure.com/story/johnson-and-johnson-talcum-powder-products-lawsuit-settlement

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

The same way a weakened immune system may “enable” a common cold. But the cold is still caused by a germ, something already there. Without the germ, there would be no cold regardless of how strong or weak the immune system was. The weakened immune system did not cause the cold - it failed to prevent it.

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

Of what I am trying to say would be the shingles outbreaks so many cancer patients experience. Caused by a virus thats already there but which the weakened immune system fails to continue to control. Without the virus there would be no shingles regardless of the immune system condition. The virus, not the cancer treatment, causes the shingles.

yesyes2
Posts: 581
Joined: Jul 2009

Great topic and responses.  People with RA have an increased risk of lymphoma because of their over active immune system, which attacks the host organs such as eyes, lungs and joints.  Perhaps because of my RA I did not experience joint pain when receiving RCHOP.  Neither did I get bone pain when receiving Neulasta injections.   But my lymphoma was the direct result of my needing to use immune suppessing medications.  So at this time Rituxan is the only drug safe for me to use against my RA.

healthyday
Posts: 1
Joined: Aug 2018

I have been on Rituxan since May 2016 and I also have a lot of fatigue. I can't keep up with my best friend who is healthy as far as walking, etc. I have a chronic sinusitis and cough that is really miserable and I have seen two ENT doctors who want to operate on my sinuses but I want to wait and see if cough and sinus congestion goes away after I should be done with treatment in October. 

yesyes2
Posts: 581
Joined: Jul 2009

Healthyday, has your doctor checked your IGG levels.  Long term use of Rituxan is known to cause these levels to be decreased and has a history of than causing sinus infections.

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