Hello all. I have only posted I think 1 maybe twice here about having SLL.
In May I had to stop FCR do to holes in my colon. By June 15th my lymph nodes came back fast. I am now going to UC Davis Med center for treatments due to the fact my oncologist is stumped by how fast my nodes came back. I now have sweats day and night and throw up 10 times a day. I am diabetic and I can take a nap and Blood sugar is fine( 140) get up and its below 50. Any one else have these problems after FCR? or any chemo? I also have developer a deadly allergic reaction to dairy products. So mush 3 M&M will put me in the ER .. Thank for reading this.
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teknomek
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Why did you have FCR to begin with? Were you with a CLL Specialist who recommended that? Were you tested before being treated so that the doc knew what treatment would work best? Sorry for all the questions, but perhaps a targeted treatment like ibrutinib would have been a better choice for you. Was targeted therapy in the discussion before you started FCR? The CLL Society has great resources about Test Before Treat on their webpage.
FCR was not my first. It was my last in a long line. I have taking all oral meds and IV infusions that are out for SLL. I took ibrutinib for about a year . I had progression so it was stopped. I am now hoping for a clinical trial or stem cell... This is why I am going to UC Davis med center now.
I do hope it all works out for you and you can find stable SLL in a clinical trial. There are many new combos out there and hopefully one will work for you. Best to you!
GMa27, I would be very interested to know where you have heard that FCR doesn't work if you have first had ibrutinib. While it may not be the usual treatment sequence, there is no reason why a previous ibrutinib treatment should prevent FCR from working. Ibrutinib doesn't select for 17p del, mutated TP53 or change IGHV mutation status, factors which do adversely impact on FCR's effectiveness. There has actually been a successful iFCR trial, where ibrutinib is given in combination with FCR.
Teknomek, I see from your past posts that you've had BR, ibrutinib and venetoclax, plus you mention other lines of previous therapy. The BR might have left you with 17p del or mutated TP53, which would definitely have impacted on the effectiveness of FCR, but you should have been tested for these markers beforehand. Unfortunately, no CLL treatments work 100% and you unfortunately seem to have a tough version of CLL. I hope UC Davis med center can find something that will help you, such as perhaps one of the non-covalently bonding BTK drugs available through clinical trials. I would also strongly encourage you to seek a free second opinion through the CLL Society's excellent Expert Access program: cllsociety.org/cll-society-...
It would help other members better support you if you gave your past treatment history in your profile. This link enables you to update it: healthunlocked.com/profile/... I hope you'll soon be able to update your profile to say UC Davis have found something which is working for you.
Our specialist collaborates your thoughts on FCR post targeted agent as well, Neil.
He said there is no data yet around placing it later in sequencing, but great success in combination and fundamentally no reason why it wouldn't work post Ibrutinib or Venetoclax. We factored having FCR in our pocket for the future into my husband's treatment sequencing discussions with our specialist, as being diagnosed at 41 gives you a lot of time for sequencing.
I've commented on your prior posts as well GMa27 where you stated this. It's usually that FCR is given first because there is a lot of data and a limited age range, not because it needs to be first for any other reason.
This is an interesting question and I was specifically asking this my hematologist at Dana Faber before starting the AVO trial (acalabritinib, venetoax, obi). She recommended FCR since I am mutated with good genetics. She said I could get FCR if I fail targeted therapy provided my genetics stay unchanged. In fact she had patients doing exactly this who achieved complete remission with that sequence at the time.
One thing is I have been 17p del from the get go. I have a total of 7 rounds of chemo of different types since 2014. This is the first time it came back so fast like nodes went down stopped FCR and 2 week later node where back larger then before. I have some in my belly area that are the size of grapefruits. And one new thing is day sweats. It can be 50 out side and I have to be in shorts and a short sleeve shirt and I am still soaked. I know about night sweats but haven't heard anyone talk about day sweating to the point my sweat has sweat. Thank you for the advice I got a 2nd and they sent me to US Davis right away knowing what I have taken and what's happening.
Dr. Byrd previously from The James in Ohio & Dr. Pinilla from Moffitt both said that FCR will not work if I chose Ibrutinib first . They agreed that the best choice would be FCR. They said if I was not in favor of trying chemo then they would support me trying Ibrutinib. I was successful with FCR. They obviously have their reasons for stating those findings but I didn't question it. My treatment was 3 years ago.
I have mentioned this information on other sites and there were a few who said they were told the same thing from different specialists. I do not have any updated information since I do not see them at this time. If I ever have contact with them in the future, I will ask them. Maybe someone from our group currently see either of these 2 specialists and can ask them if they still recommend the same findings.
Thanks for that background info. It would indeed be interesting to have an update from those specialists. We've learned a lot about the new treatments over the last three years!
Actually, you probably signed consent for the procedure you underwent, did you not? Also, as AussieNeil said,
"To be fair, with targeted therapies being so new, three years ago, specialists were still working out optimal sequencing. They still are!"
Even so, getting a second opinion from a legal professional that specializes in medical malpractice may not be a bad idea, although I am not advising to do so, and of course, legal action may not be affordable to you. Initial consultation may be free of charge.
I have no idea what u are referring to. I was so pleased with the advice I got from my experts. I was just saying what was reported to me about Ibrutinib & chemo at that time.
I see now that there is success with trying Ibrutinib first & then FCR. Every month to a year things change. I didn't want to go on Ibrutinib so I welcomed the chance to try FCR. I was done in 3 cycles.
Did you have a FISH test to see if you were 17p- and are you unmutated? FCR does not work well for many versions of CLL. I hope you are seeing a specialist as you can take on a lot of unnecessary toxicity by taking the wrong treatment. Good luck!
UC Davis is familiar to me ( I worked in the Port of West Sacramento from 2007 to 2013, and when I was diagnosed with CLL in 2008. I looked for a CLL expert at UC Davis, but ultimately had to travel to Stanford to find a well published CLL expert).-
So out of curiosity I checked today to see if there was a CLL researcher at UC Davis that arrived after 2008.
This is one way- not perfect, but it checks to see which doctors publish papers that mention CLL: expertscape.com/ex/leukemia...
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