tag:blogger.com,1999:blog-781671514856579833.post8900639379959183817..comments2024-03-27T08:59:24.243-04:00Comments on Lympho Bob: ASH: Bendamustine and ToxicityLymphomaniachttp://www.blogger.com/profile/17519575154615844854noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-781671514856579833.post-11057801492192823962017-01-13T14:35:03.404-05:002017-01-13T14:35:03.404-05:00Hello Mylegacy.
First off, this is a good time to ...Hello Mylegacy.<br />First off, this is a good time to remind you (and anyone else reading) that I'm not a doctor, or a cancer researcher, or anything else that involves medical or science training. I'm just a guy who reads a lot. So anything I say is just speculation.<br />Second -- really nice description of your symptoms. Very vivid. I'm sorry you had to go through them, but you really paint a picture.<br />It does sound to me like you were dealing with short-term symptoms from the Rituxan. A good chunk of people have allergic reactions to Rituxan, and the thinking is that it comes from the murine (mouse-originated) parts of the Rituxan. I had some of the same symptoms as you when I had R -- itching and burning, but also some chills (rigor), plus horrible stomach pains for a few hours after the infusion. Those problems are all fairly easy to deal with in most people. <br />As for the Bendamustine, when it was first approved, it was praised for having fewer side effects than CHOP, which it was compared to for effectiveness. But again, those were relatively short-term side effects. We're seeing longer-term effects now, and I think researchers are going to have enough data to start thinking in more nuanced ways about the best way to sue Bendamustine (for example, NOT in combination with long-term maintenance, at least for some populations). <br />In short, in my non-expert opinion, I don't think Rituxan or Bendamustine are going anywhere, but they might be used differently. Both have been successful for a lot of people. And Bendamustine has been used in Europe for a long-time, so there has to be some long-term data there, too. We're using them in new ways, in new combinations, so we have to expect some new problems. <br />BobLymphomaniachttps://www.blogger.com/profile/17519575154615844854noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-13724068086997519042017-01-13T14:22:35.757-05:002017-01-13T14:22:35.757-05:00Hi Shelly. I hope things are going well on Cape Co...Hi Shelly. I hope things are going well on Cape Cod -- I grew up in Massachusetts, and have some great memories of the Cape. And congratulations on your year-long CR. As for the Bendamustine, it's hard to say if it was the B or the R that gave you problems. They work differently, but both can have some effect on the immune system, so I guess either could explain an infection. But it seems like they guessed right with the Rituxan -- you're a year out with a CR! I'd say that's the most important thing. I hope it continues for you. And thanks for reading.<br />Bob<br />Lymphomaniachttps://www.blogger.com/profile/17519575154615844854noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-11398045785972851962017-01-07T17:15:23.397-05:002017-01-07T17:15:23.397-05:00Bob, I was told, in a letter from my Unc that - p...Bob, I was told, in a letter from my Unc that - pending an unexpected result from my chest scan or my bone biopsy - that I would be a "Watch and Wait" with my FL. I was given a date five months(ish) off for my "next appointment." As a quite healthy, very active, 69 year old, I was delighted.<br /><br />The very next day my Unc phoned - change of plan - "Your bone marrow is 95% involved with Lymphoma. We have to start immediately".<br /><br />"Immediately" was to be a six month set of two day treatments of Rhythm and Blues (as I called them) or Rituximab and Bendamustine as most call them. I was to get B 12 times and R six times (R & B on the second of each set of two days and B only on the first day of each set).<br /><br />The day before my first "set" I met with my Unc. Change of plan. Because of the 95% involvement they were concerned that "statistically" they might actually kill all my healthy B cells and also they might create a TLS situation where the toxic substances from the dead cancer cells (and the healthy B cells killed by R) overwhelmed the bodies ability to deal with it. SO - I got B the first day (to try and just knock back the cancer) and they skipped the second day (B & R) all together.<br /><br />Last week I finished my third set of treatments. The second and third have both been the full two day doses.<br /><br />During infusion - to me, sitting in the chair - B seems not unlike saline. I have no noticeable reaction of any kind. AFTER, there appeared to be almost no negative situations.<br /><br />R however has been a beast of a very different colour. During my first infusion (this would be the second day of my second set) I got waves of slipping, sliding, itching and skin flushing on my head - then on/in my chest, then deep up in my armpits. My "Team" reduced and raised the feed, I ended up getting about 85% to 90% of the R in the bag.<br /><br />Last week, the second time I got R, it started the same - my head began to itch and flush. Then BANG (literally BANG) I felt (what felt like) a blast of hot air go from the outside of both ears into my sinuses. My upper mouth felt very hot and sore (almost like a chemical burn), my tongue swelled up, it affected my speech and my breathing. To breath (adequately) I had to take deep breaths. As I did it felt like a pair of hands were holding my lungs and only slowly letting them expand as I breathed in. There was (as there had been in my mouth) reasonably significant pain in my chest. They switched me to saline until the symptoms subsided and then restarted the R.<br /><br />As you will have no doubt noticed - I survived (so far).<br /><br />NOW - B - to me like water - ends up perhaps having deadly "later" side effects. While R - which seems to hate me, and all I stand for, - may be the longer term "no problem" chemical.<br /><br />My question(s) is/are: Is the problem with (R & B) Chemo the "short term" side effects (like I'm getting with R) of the chemicals during infusion OR some "longer term" effects that I have yet to encounter? I now know some of R's short term effects but are there "known" longer term effects of B & R who's joys I've still to look forward to?<br /><br />To quote the yellow press tabloid: "Enquiring minds want to know."Mylegacyhttps://www.blogger.com/profile/11532592953744479060noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-82347352329067650682017-01-03T13:48:51.504-05:002017-01-03T13:48:51.504-05:00Hi Bob, I was dx in 2015 with an aggressive form o...Hi Bob, I was dx in 2015 with an aggressive form of fNHL, so treatment had to start immediately. R-Bendamustine was induced - treatment was supposed to be 6 cycles, 28 days apart. I reacted to the R on first induction, so it was stopped and reintroduced the second cycle more slowly, Bendamustine was continued as prescribed. By end of third cycle start of 4th cycle I was diagnosed with pnuemonitis and put on steroids and antibiotics which cleared the issue. They blamed the infection on Rituxin and decided to stop it altogether, but continued with the B for the last two cycles. In 2016 scans showed CR. No maintenance was prescribed. I'm at one year anniversary for ending treatment and will have another scan in Feb. Anyway, long-story but after reading this I'm wondering if they jumped to blame Retuxin for my infection without considering the B could be the cause? From reading the entire article it appears there is a relationship to the maintenance component and the doctors are reconsidering prescribing maintenance only when there is a PR. So far, I am doing very well, no longer anemic as of last blood work and hope that I have been cured. I am so grateful to have found your blog during my treatments - you give me and so many others hope and of course scientific finding on fL. Watching you continue to live well and thrive this new year is all I need. Thank you! Shelly, Cape CodShellyhttps://www.blogger.com/profile/11365352471115109123noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-33300682579859961152017-01-02T17:41:18.647-05:002017-01-02T17:41:18.647-05:00Happy New Year Bob !! Always reading your blog, is...Happy New Year Bob !! Always reading your blog, is my orientation in my follicular lymphoma disease. Thank you for helping us understand and bring us news and knowledge. Health and Peace for you and your family.Marcela, canary islandsnoreply@blogger.com