Rituximab alone...? Chemo-free thoughts invited.

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leiker_shop
leiker_shop Member Posts: 10 Member

For those of you with low-grade/indolent lymphomas, what are your thoughts? Were any of you offered Rituximab monotherapy? We are not even to treatment options yet ourselves, waiting on initial grading... but we are curious about the chemo-free options, for those offered "watchful waiting."

Does using Rituximab WITHOUT chemo make it less effective down the road, when you might NEED chemo? In other words, is there a window of effectiveness which you don't want to use up prematurely?

The same question for chemo: since indolents are not really cure but chronic, should you "save the big guns" for when you need them most?

All of this is theoretical for us right now, but I AM curious to hear your thoughts and experiences with this. TIA!

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  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,815 Member
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    When you have a diagnosis, your oncologist will discuss Best Practices and go through reasonable treatment options. You do not currently have a diagnosis, but rather lay speculation. Both indolent and aggressive lymphomas are virtually always treated first-line toward curative effect. Be aware that while indolent lymphomas are regarded as definitionally 'incurable,' MOST, the VAST majority, are put into full remission for life. That is, in effect, first-line treatment 'cures,' if you will, the disease. Rituxan is not regarded as 'curative' of blood cancers, but when employed in conjunction with combination chemotherapy regimens, assist in achieving cure. When Rituxan is used years after remission when recurrence occurs, it is then often employed a a maintenance drug, or palliative --keeping the disease at manageable levels, often for years. My own lymphoma was a Hodgkin's equivalent to Follicular: NLPHL. (NLPHL is a fundamentally atypical lymphoma, not clearly an HL or NHL, and has been classified as both variously over the decades.) If anything, it is more indolent than NHL Follicular, and is defined as 'incurable.' BUT: after aggressive first-line treatment (almost always R-ABVD), it goes into complete remission for LIFE in 85% of all cases. SO, 'definitions' mean little; what matters is statistical outcomes. Ergo, Follicular NHL is 'cured' by initial therapy in around 85% or greater of cases. The younger a person, the better they tolerate chemo, so it seems best to do the heavy hitting early-on, especially since there is probability of permanent eradication. Added simply as data points: Follicular lymphoma is traditionally treated first-line with R-CHOP, which excellent outcomes. Cases with worse outcome probabilities (based on staging, bulkiness, and blood chemistry) sometimes substitute R-EPOCH. And rarer still, mild cases sometimes report being treated with 'B&R,' or Bendamustine and Rituxan. Do not dread the cure more than the disease. The disease is worse....

  • leiker_shop
    leiker_shop Member Posts: 10 Member
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    Thanks so much, Max! The note in Dave's file (and doc, at yesterday's appt) says DX is "Follicular Lymphoma Grade 1 of multiple sites." To be honest, we are unhappy with the oncologist assigned here at MD Anderson. He is condescending, dismissive, doesn't want to take even minimal time to explain test results, etc. He is a highly regarded researcher but seems not interested in educating us, rather in getting us out of his office , maybe to make room for less boring cases! We don't feel heard, and there are typos and seeming inconsistencies on the written reports that really undermine our confidence in him/them. We are going to seek a second opinion in Denver. Fortunately, despite the weight loss and head sweats, we do at least feel confident now that it is not a more aggressive subtype or something transforming... so we have time to seek someone more engaged for long-term treatment. This forum is helpful!

  • SCTridash
    SCTridash Member Posts: 11 Member
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    Hi leiker_shop - definitely sounds like you need a new doc. Personally I am not a believer in "watchful waiting." The earliest FL can be treated and effectively cured (Max above provides a solid summary of the prospects). If it's Stage 1 and isolated to one area of the body, the therapy can be more targeted and they may even be able to kill it all with radiation. Find a new doc and push for as aggressive a treatment as the docs are willing to consider. Don't shy away from the chemo-mab combination - the record says that this combo is the most effective treatment to date for the indolent types. As Max says above, getting the aggressive treatment earlier in disease progression and earlier in life enhances prospects for permanent remission and for your body tolerating the treatment. Best wishes on your treatment.

  • netty365
    netty365 Member Posts: 6 Member
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    Hi

    my diagnosis came as complete shock to all. Had a lump on shoulder that 3 specialists and 2 mris all thought ganglion cyst. All my bloodwork normal no others issues. Had removed and path came back as follicular Lymphoma. PET scan show d have a bunch throughout body all near bones bone in organs (btw ct scan showed nothing) First oncologist wanted wait and see method and radiation only if the tumors that were causing bone pain, because if possible bone fractures.

    I was not comfortable doing nothing and depending only on me weather or not I feel pain. I’m an active 56 year old. I always have aches.

    did second opinion at MSK with specialist who only treats lymphoma and specialist in follicular . What a difference. Thought only radiate area that only hurt was “wack a Mole”. Plus my bones are good. Had his pathologists get tumor sample for complete study.

    he recommended, CVP chemotherapy. Which includes iv immunotherapy. He said everything I already thought I should be doing. Not just wait and see and radiate. Especially because I have so many hips, shoulder, back, etc.

    I am so glad I went for second Opinion. My mind still boggled how I advised do nothing from first oncologist. But maybe because she treats all cancers. And I really needed someone who just specializes in what I have. 1 treatment down, 5 to go

    Good luck to all

  • po18guy
    po18guy Member Posts: 1,487 Member
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    There is a reason why it has been offered. As well, anything that is started can be stopped. Bear in mind the Rituxan depletes your blood's B cells, which is a so=-so thing while the virus is still present.

  • MadManWithABox75
    MadManWithABox75 Member Posts: 5 *
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    My wife is a pharmacist and studied my LCAL for months while waiting on my first oncologist to decide what to do with it

    I switched to an oncologist recommended by my cardiologist and surgeon who did my heart surgery and port implant


    She knew immediately what it was and how to treat

    for my case R Chop Chemotherapy was the first and best choice

    my wife would agree with max

    listen to your oncologist

    do not wait to get it treated

    go all in or not at all

    write down all of your questions and ask them to your oncologist

    make a log of your questions, food, liquids, pain level, feelings, and all symptoms and share them with your oncologist every time you go in!!

    I wish you well during your journey


    find something you like to do that you can do from your bed or couch

    I play on my PS4 and XBOX S

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,815 Member
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    MadMan,

    Welcome to you. I wish you speedy success in your treatment, although with lymphoma at stage 2 or higher, 'speedy' usually means 6 months or more on infusion, and regaining any sense of feeling 'normal' thereafter can require many months or even a year or more after treatment ends. It is great that your wife is a pharmacist, since side-effects and how to address them is of great importance. A hobby such as you describe that requires little exertion is also wise. I have built a huge library of music that I find soothing on Pandora, all for free. Also, studied bass guitar -- that kind of stuff. And reading about cancer therapies in general can be valuable as well.

    Everyone here is pulling for you,

  • tgyphilly
    tgyphilly Member Posts: 49 Member
    edited April 2022 #9
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    The trend with indolents like NLPHL and FL is to avoid the more toxic chemo treatments until deemed really necessary. Doctors are working off a lot of data around heart and lung damage, secondary cancers, infertility, etc. caused by the more aggressive chemo cocktails and radiation zaps. There will be a lot more watchful waiting recommendations around the indolents now than there has ever been. As a patient, it's frustrating because you just want to knock that sh#t out and be done with it. I know that is my instinct, but I have learned to trust the process, trying to remember that indolent cancers are just that, and they aren't going to quickly eat you up in the 6 months, or even a year, between scans.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,815 Member
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    I certainly agree with all that philly said. Because my Stage III was not discovered until it was all over my body, my onc said that I had had it at least a year, and intimated that I had possibly had it for many years. I had to get going due to nodes pressing against my heart, which mimicked angina, and compressing my esophagus, with made swallowing problematic.. The disease was also across both auxiliaries (armpit regions), on the spleen, pelvic area, and both lungs. Again, good luck

  • newoldguy
    newoldguy Member Posts: 16 Member
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    I am stage 3, type 3a, nodes in the neck, chest, groin all for the most part 3 cm or less, no bone marrow or extra nodal involvement. The oncologist offered watchful waiting which I did not like and we talked about Rituxan only or Rituxan and Benda. He said if I wanted to treat it his suggestion would be R + B which is well tolerated by the elderly for the most part. I went through 6 months of treatment and just now started maintenance for two years. PET scan showed complete remission and would like to keep it this way if possible. I do not regret having chemo and would do it again.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,815 Member
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    Great news, newold. B & R has been a go-to for cases like yours for several years now. It avoids the neuropathy of vinblastine and vincristine (in CHOP and ABVD), the heart damage that Adriamycin can cause (also in both CHOP and ABVD), and the lung damage that Bleomycin (in ABVD) is known for. While Benda is tough medicine, it has the advantages I just listed. I hope you keep full remission forever,

  • newoldguy
    newoldguy Member Posts: 16 Member
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    Thanks Max.

    I had read several trials/articles that suggested elderly patients should not be offered watch and wait as age alone is not a good prognosticator and that age-appropriate treatment should be started. What that treatment should be may be up to the health of the patient, so in some cases Rituxan alone might be appropriate. My onc felt that R & B would be tolerable for me, and it was for the most part. The only issue I had was AFIB at times and I had to watch caffeine intake and was given metoprolol to offset. Pretreatment is part of the procedure and if done properly side effects may be minimal as they were for me. While not a walk in the park I was surprised at how well it all went.

  • teenabirge2
    teenabirge2 Member Posts: 5 Member
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    My name is Teena Birge. I’m 62 years old and was diagnosed with Grade1 (Indolent) Follicular Lymphoma stage 4. It was above and below the diaphragm. They found a large mass in my abdomen and I was started on Rituxan and the chemo Treneda for six months. After the first three months I had a pet scan and it had shrunk the tumor to a small tumor in my abdomen and had gotten rid of everything in my neck and chest. The next three treatments did not work and by the next pet scan after the sixth treatment the tumor had began to grow back a small amount. I’am now scheduled to see a surgeon next week to talk to her about debulking the tumor with possible removable. If she can get it all no more chemo but if she can only get part of it I’am going to go on R-Chop to finish out. I’m scared. The Treneda was a mild chemo I took and it made me sick but I did not lose my hair nor did I vomit but it made me very weak, fatigued. Any comments of my worry of R-Chop?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,815 Member
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    Teena,

    (Just for reference to others reading this thread, Treanda and Bendamustine are the same thing.)

    As Newold and I were discussing, Rituxan and Bendamustine ( "B&R" )are a popular choice for patients in which minimization of side-effects is important, such as older ones. But is it still not a common first-line, curative choice. R-CHOP remains the gold standard for curative effect against indolent NHL, and even many aggressive NHLs. If a shrunken tumor later began to re-enlarge, that is 'refractory disease,' and ordinarily requires switching drugs. The fact that it has become refractory this fast probably means it needs to be eliminated somehow or other. Many people on this site have gone through R-CHOP and ABVD in their 70s, but it is not easy. You will be checked for heart and lung health before beginning.

    You might want to ask your doctor if spot radiation ("SBRT") would be easier and/or more effective than surgical removal. This would require you meeting with a radiation oncologist if your medical oncologists thinks it a good path. Neither radiation nor surgery are common/typical choices against lymphoma, but under some circumstances, they are used. Be aware that none of us here is a medical expert of any sort, and we cannot second-guess any doctor's recommendations. But you can ask about the radiation, and whether R-CHOP is the only medical alternative available.

  • duckhead
    duckhead Member Posts: 19 Member
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    Sorry to hear about the tumor in your abdomen growing again after completing your treatment, Teena. I sincerely hope your follow-up treatment will go well after meeting with your surgeon and that you will go into remission like many of the folks here on this site.

    Similar to you, I was diagnosed (at age 60) with grade 1-2 & stage IV follicular lymphoma this past November with bulky mass in my abdomen. Just finished my 6th and last Rituxan & Bendmustine (B&R) treatment. For what it’s worth, I will share my experience here briefly just for reference.

    I had no symptoms the month prior to my diagnosis other than enlarged lymph nodes in my groin area and my neck. Then the symptoms came on with a vengeance all of a sudden, fatigue, weakness, loss of appetite, itching, shortness of breath and weight loss (but no fever or night sweats).

    I had moderate pleural effusion prior to starting chemo requiring thoracentesis (x2) in the course of a month, then a severe reaction to Rituxan during the first infusion and pulmonary embolism after the second cycle that put me in the hospital for several nights (still on blood thinner for another month). Starting with the 3rd cycle, things got much better with few symptoms such as mild constipation for a couple of days following infusion and itching on my torso. Other than that, I feel 99% normal with lots of energy and not much weakness or fatigue to speak of. Appetite has been very good. My blood counts (white, red, platelet, neutrophils etc) got to be borderline low after four cycles of treatment so my benda dosage was reduced for the last two cycles. All in all, I agree with newoldguy that while B&R was no walk in the park, it was quite tolerable (in my case, after the first two cycles). I did not have a mid course scan and now eagerly await my PET scan scheduled for early June. Fingers crossed.

    As for R-CHOP or B&R, between the two, I get the impression what is considered front line treatment for indolent and low grade (even tho advanced stage) follicular lymphoma all depends on where you are getting treated. In the area where I live and the facility where I am getting my treatment, it appears (unscientifically, of course) B&R is the go-to treatment. Both my first and second opinion called for B&R. The same goes for the maintenance regimen. Again, my layman observation tells me it depends on the cancer center and the treatment culture so to speak. I have the impression that a maintenance regimen following B&R treatment for my type of follicular lymphoma is not preferred where I am getting my treatment. I may be wrong but I hope to get educated and plan to have this discussion with my treating physician following my scan if all goes well.

  • ShadyGuy
    ShadyGuy Member Posts: 913 Member
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    As Max said, I am not a doctor. However I suggest that you discuss with your doctor getting Fludarabine and cytoxin as a less damaging alternative to CHOP. It worked well for me and generally is kinder to your heart and lungs. Wouldn’t hurt to ask. Good luck!

  • newoldguy
    newoldguy Member Posts: 16 Member
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    Max, is there actually some statistics out there somewhere that show follicular NHL can be successfully cured with R-CHOP? I know sometimes Stage 1 and maybe some Stage 2 can be cured with radiation and perhaps surgery, but will R-CHOP provide a cure for these also? I have always been under the impression that Stage 3 and 4 advanced follicular which encompass about 80% of patients could not be cured. Treatment was provided to try and achieve long remission rather than cure. I have also read that while B & R is easier on elderly patients it does provide a longer remission than R-CHOP does, and hence a couple of reasons why it has become more widely used. I read that if B & R is used as a primary treatment and CR is reached there is no benefit to Rituxan maintenance for two years as the B & R alone seems to provide an increased benefit. This may be why there is some hesitancy to suggest maintenance if B & R is the primary treatment. Thoughts? Does it depend upon what study you believe?

  • SCTridash
    SCTridash Member Posts: 11 Member
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    Newoldguy - quick observations before Max weighs in. I just finished a course of B-R, was diagnosed Feb '21 at age 58 with Stage IIIA FL, no bulky disease but was pretty much everywhere in my torso - 7 lymph node clusters from memory, the largest tumor in the gut at 3X3 cm. After 3 treatments of BR I registered a complete remission, PET scan result was exactly the same after 6 treatments. At diagnosis discussed with the docs CHOP vs B, studies in recent years suggest the outcomes are very similar for Stage III or below FL so we went with the B, which for most folks is moderately less toxic. FL is still considered chronic and I don't think most docs consider either B or CHOP as providing a "cure," even though a large % of patients will live 15-20 years or more after either treatment without recurrence.

    On the subject of maintenance therapy (typically 2 years of Rituximab, once every 2 or 3 months), the various research and online discussions suggest this is written in stone - that you automatically do the 2 years of R after the chemo. My doc has had a different view - we even discussed not doing any maintenance R due to my successful response to the frontline treatment, in the interest of reducing infection risk. We went ahead with 2 maintenance treatments, and about a month after the second one I developed an infection in my lung with some accompanying fatigue and fever flashes, which after a CT scan and a few assessments we concluded was a form of pneumonitis induced by the Rituximab. We've since postponed the maintenance treatments and we may not resume. My latest PET scan shows I'm still in CR. It's taken a few months to shake off the pneumonitis but the conditions seems to have cleared. (I also got Covid, which didn't help the effort, but eventually shook that off as well...).

    My advice is discuss with the docs the potential benefits of treatment vs the potential side effects. Rituximab is a very successful therapy but it is not a miracle drug and can cause menacing side effects as well.

    Would also encourage you to discuss with the docs the possibility of Obinutuzumab, a recent Mab therapy for NHLs that some trials have shown to be somewhat more effective than Rituximab, though apparently still too early to draw conclusions. Best wishes-

  • newoldguy
    newoldguy Member Posts: 16 Member
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    SCTdash, thanks for the comments. Read back to my previous posts if you have not. I am Stage 3, 3a also and have gone through 6 mo. of R & B with complete molecular remission and now two treatments into two years of Rituxan maintenance with the agreement of my doc, although I though his agreement might be a struggle it was not. Your comments were pretty much what I heard from my doc, my age, now 74 has some bearing on this also. R-CHOP was not mentioned as first line treatment and based upon what I read in various studies, it likely would have not been of benefit, particularly in offering an overall cure for this.

    Be well.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,815 Member
    edited May 2022 #21
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    NewOld, et al,

    The word 'cure' is avoided throughout blood cancer oncology generally today. But at the same time, it is routinely used in some clinical contexts, such as the purpose, or effect, for which a regimen is prescribed. Regimens are order by the lead doc toward either curative or palliative effect, based upon numerous factors. Indolent lymphomas, such as my own NLPHL, receive this designator, which has a variety of purposes, such as dosing, insurance coverages, etc. My six months of R-ABVD was ordered by my hematologist at our teaching hospital 'toward curative effect,' for instance. Other doctors, for other patients, may write orders toward palliative effect for aggregate reasons, such as stage (not usually determinative in the case of lymphomas), age, comorbidities, or even patient preference. Any oncologist will explain this to any patient, if asked; most volunteer such information at the get-go.

    I am unaware of a normative AMA or NIH declaration that any lymphoma is or is not 'curable.' The term and opinion in most discussions is based upon long-term statistics and professional consensus, although such consensus is seemingly always partial at best. Those who have read my posts long-term will recognize the following statement, so old-timers bear with me for a moment: My own NLPHL is as indolent, and possibly more so, than follicular NHL, but it is not something to be argued. And my disease has a well-established relapse rate of around 15%, lifetime. I do not know the most recent number for follicular. But this means, of course, as my onc/hematologist explained, that 85% of patients who achieve full remission/NED never see the disease again. My doc said that, in effect, the disease was 'cured' by the treatment. Doctors use the 'not curable' as a hedge against those who will relapse, not wanting to hear outrage from individuals who were told they were 'cured,' as-if that implied a warranty of some sort. It does not, with any cancer.

    I watch OncologyGo via streaming, which is basically the world's leading researchers discussing seminars that they have attended, and the new drugs and treatments that are out there. Experts from all over the world use the term 'curative' as I have described here all the time. It is an interesting Stream, and Follicular NHL is one of the more commonly discussed diseases. A few unfortunate types of cancer diagnosis, such as Stage 4 Lung or Stage 4 Pancreatic, are de facto discussed as if they are incurable, and even the news drugs and therapies in commercials discuss only survival time extensions, never cure. But the list of such diseases is somewhat narrow. My cousin's daughter was diagnosed with advanced, Stage 4 colorectal about five years ago, and had extensive debulking surgeries, draconian chemo, and a lot of radiation, as well as partial removal of her sternum and one whole breast. This was done at MD Anderson, 'toward curative effect.' She is NED/CR for the last two years, but no one tells her she is cured. A friend's wife at church about seven years ago was diagnosed with bulky Peritoneal Cancer, Stage 4, and she is NED today as well; miracles happen, and definitions evolve.

    I have no ax in this fire, and if someone wants to view anything as 'incurable,' I'm more than fine with their view.