Bendamustine/Rituxan

I am a 53 year old single male. I was diagnosed with CLL about 10 years ago. In recent months my WBC has raised to almost 200,000 and my platelets have dropped as well as my hemoglobin count. My oncologist is sending me to get a PET scan next week and believes I will have to start a regime of Bendamustine and Rituxan for six months in the near future. (two consecutive days a month) Being single and living far from family has me a little concerned as to how I will deal with this chemo. Can someone please provide feedback as to there experience with these two drugs?

21 Replies

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  • I see you are in the U.S. and suggest you get a second opinion from a CLL expert hemetologist.

    There are nonchemo alternatives now... like Imbruvica (ibrutinib), but at age 53 in generally good health, I wonder why they haven't recommended FCR, which generally has longer remissions...

    You don't mention any genetics like FISH tests or mutation status results so it is a bit difficult to understand why bendamustine/rituxan [BR] , which tends to be used on patients over 65 yo.

    If you tell us your city perhaps someone can suggest a doctor for a look see... this is common practice in CLL, because not all incologists are up on the newer treatment options...

    ~chris

  • I agree that a CLL specialist is important. I know the specialist I see doesn't suggest a treatment until after the genetic testing is done and non-CLL specialist oncologists might not be up on the latest info.

    I think there are also some differences in the US. And probably even differences between cancer centers here. I'm not sure if it's because we have more options available or because the level of confidence in new treatments is higher.

    My doctor says he seldom suggests FCR, and then only for patients like you who are under 60, so suggesting BR first might not be that unusual here in the states. I was disappointed at first because I've read so many stories of long remission on FCR, but my doctor said that the risks were also greater and that if/when the treatment I'm getting fails there are other options. If I had been under 60, or had pushed it, I'm sure we could have considered it. He was great about exploring options rather than making the choice for me.

    There's a lot to learn and consider and I'm glad you've found this site. You'll get plenty of options, experience and ideas. Welcome!

  • I had bendamustine in 08. It worked well for me I was 50 when was treated. Visited my oncologist Tuesday all bloods normal including platelets. Didn't realize it but I've been in complete remission going on 9 years. Hope the very best for you.

  • You will be fine just stay out of germs way, and don't get sick. I picked up menangitis after my first session in 2012, tgat was very scary and rough. You will be fine with the chemo. Wear mask and keep away from people all you can.

  • I had BR at 63, nearly 5 years ago - got a good remission, though treatment was not trouble free. I have written extensively about this - you could search my 'Replies' if interested.

  • I went through the Rituxan/Bendamustine chemo treatment finishing 9 months ago. Everyone is different, but I didn't find it to be nearly as bad as what I had been lead to believe. I initially felt much better with a huge decrease in the size of the lymph nodes in my neck and throughout my body, almost immediately, within two weeks. The fatigue that I was experiencing before the treatment has remained and has not improved since the chemo as I was told it would. CT scans and blood test have shown the treatment to be effective in putting the CLL into remission, at least for the time being. I am 63.

  • Hi TedC--I have very large swollen lymph nodes in my neck and jaw area going on 2 months now. They are starting to be a problem and my Onc has offered BR as a treatment option to deal with them--my WBC is only at 40,000 and spleen/liver are fine and other nodes are small - so the only reason to treat now is to reduce the neck nodes. If they stay the same size I'm trying to decide if I should just wait on treatment--I assume 6 mos of BR followed by 18 mos of R is worse than my current discomfort.

    Did you have high WBC or other reasons to treat with BR?

  • I had not been diagnosed until a blood test looking for a possible explanation for the shingles and chicken pox I was experiencing. My WBC was at 42600 and Lymphocytes were 86.7%. After a biopsy of a lymph node in my neck the size of a walnut, it blossomed to the size of an orange. Bone biopsy revealed 50% cancer in the marrow. CT revealed enlarged lymph nodes throughout my body. I had been having a lot of bone and joint pain and fatigue that had been increasing for four years prior with no explanation to include increasing stiffness in my neck prior to the lump appearing.

    I did not go through a wait and watch period to have time to absorb and think about any other options. My doctor had recommended BR and I started the next morning. He did say there were less aggressive therapies available but preferred BR to hopefully increase the length of time in remission.

    I don't regret it, and would certainly do the same thing again, as I did see immediate results in the shrinking of lymph nodes to normal size and the reduction in bone pain and ability to turn my neck to look while driving.

    The treatment for me was not bad. After the initial treatment where my wife accompanied me, not knowing what to expect, I drove myself to and from the treatments with no issues. I had the same side effects many experience. No hair loss. Fatigue was the worse of them and while I had been having significant fatigue before treatment it was worse during treatment and has not improved since treatment. From what I have been able to tell though, fatigue during treatment is to be expected, but the fatigue not improving is something that no one seems to have an explanation for and is unusual.

    I wish you the best whatever you decide. For me, I am happy with the results of the BR.

  • Thanks so much for your thoughtful response!

  • The first oncologist I went to wanted to do BR for me as well. She said it is tolerated better. I am 45 and fit. FCR is clearly the first choice by CLL docs. I also had to ask her about IGHV testing. BR is about twice the cost of FCR, and my oncologist ran their own infusion clinic. She either had a financial stake in the choice or was not up to speed with the best treatment options. I no longer see that doc.

    In the end I am unmutated and feel a chemo option (FCR or BR) was not the right choice for me. I was going to go the Imbruvica route, but was able to get into a Imbruvica/Venetoclax trial. 100% see a CLL specialist prior to ANY treatment. You are only treatment naive once. Read up on IGHV mutation treatment. I also had to start treatment due to RBCs going low, my marrow was 90% CLL. I hope you get enough W&W time to make a choice that works for you.

  • Hi nkferg--I'd like to offer some input to you and others in the community about the varying cost of treatment. Generally speaking, the cost of treatment drugs does not necessarily translate into higher profits for the oncologist or infusion center. The drugs themselves are higher in price usually because they are newer and under patent protection and the pharmaceutical can charge higher prices during this period. The doc or infusion center generally is not making a profit on the drugs but rather on the professional services of the infusion and monitoring services.

    In any event, always feel free to ask your doctor or other healthcare provider about the cost of treatment and their own financial interest in the services they are providing. As patients and consumers we have a right to know this information before we make decisions.

  • I would not have stayed with the doctor anyway. BR first line in fit patients is not recommend by any of the experts that I have seen talk about it. It is technically not wrong by NCCN guidelines, just not the first choice. I have no medical reason not to do FCR. I am in a smaller town of about 30k and she is a generalist hem/onc that sees a lot of older patients that probably don't seek second opinions.

    I tried to find recent legit source for info, but here is an older article from NBC. I would hope that there was not a financial interest in her treatment choice. I do believe there is far greater profit involved in infusion clinics as opposed to writing a script.

    nbcnews.com/id/14944098/ns/...

  • I had BR frontline and was a fit patient BUT I was in a clinical trial with the addition of idelalisib.

    Dr Sharman believed that to be a great compromise. Less aggressive chemo with less side effects with the addition of a small molecule.

    Fortunately, I got the placebo instead of the Idela. Turned out idelalisib upfront can be deadly in some.

    I'm 2 years post last infusion and counts are normal.

    I work full time. The only adverse event was pneumonia at the end.

    I can't change anything now as for my choice but am happy with my remission.

    Jeff

  • While we hope that we are being recommended treatment because at that stage in our CLL journey it is the lowest risk for us, I'd recommend always asking specifically why treatment is being encouraged now. If the reason doesn't appear in the iWCLL guidelines on when to start treatment: bloodjournal.org/content/11... , I'd be asking for a second opinion. (The iWCLL guidelines provide a much better outline of the triggers for starting treatment than the NCCN guidelines.)

    Unfortunately, a cancer centre does see more revenue when treating a patient than when monitoring them, due largely to the increased medical services needed during treatment. How drug purchases impact profit would depend on the complexity of how the practice is run and arrangements with insurers and I have no idea how that accounting works. I suspect for some private practices, particularly when doctors are rated on the revenue they bring to the practice, there would be pressure to treat patients more for the benefit of the business than the patient, but unfamiliarity with the latest developments in treating CLL is likely more of a factor in earlier than appropriate treatment.

    Neil

  • I was fit, and had BR as a first line treatment (in 2012) in the UK. treatment was on the NHS, so neither the doctor nor the system had any financial incentive whatsoever to recommend it - the reason given was that it was less aggressive than FCR (I was 63).

    Despite some problems (documented in my Replies), I don't regret it. I have had 5 good years since, and no long term side effects apart from a minor tendency to an itchy rash, which on occasion needs a soothing cream (nothing stronger).

    So, for me, BR was a success and I don't regret it for an instant - but we're all different in outlook, in genetics, and in what we can tolerate.

  • My husband underwent BR chemo last year and found he tolerated it very well, and is in remission . Good luck , I'm sure you will sail through this at your young age :) ..

  • 73 yro male who relapsed from FCR. Went BR and for me it was a piece of cake - a little tired but otherwise OK. You'll be fine...go for it. Do what they tell you. The secret is attack, attack, attack.

  • As others have said seeing a CLL specialist is very important. Many Hemetologist are not up on the latest therapies. I have been on Imbruvica for 2 months and so far it has been fine. No major side effects so far.

    You may also be able to get into a clinical trial. I am on one starting with Ibruvica then adding Ventaclax. The longer term goal is to get a deep remission then get off all drugs for a while like happens in CML - I am told.

    Study your options closely. Compare and contrast opinion and treat long term trade offs.

    This is a very good talk from Ohio state.

    go.osu.edu/TreatmentLandsca...

    Study Page 46 closely,

    Be well,

  • Hi mejiae. I am 56 years old. I have just finished Bendamustine & Rituximab. (4 Cycles). In remission as of yesterday. I have posted my progress with ups & downs included. Please have a browse of my journey, I sincerely hope it is of help & support to you. Stay strong & positive & best wishes for your journey.

  • Note: To follow Jack's journey, just click on his username above his post or reply and select his posts and replies or follow this link healthunlocked.com/user/Jac...

    Neil

  • Thanks Neil.

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