I’m a newbie to this forum but not to CLL/SLL. I’m an 86 year old retired psychologist who was in great health and very active when
I was dx‘d on Dec 2011, and have been followed by an oncology medical group since. From diagnosis until about 10 months ago at least my disease was considered indolent and no treatment was necessary. Then, between two routine scans, a left pleural effusion went from trace to completely filling the left pleural space. I underwent left thoracentesis, and soon thereafter started BR chemo. The treatment plan calls for 6 three-week cycles with infusion of B and a shot of R during days one and two of each cycle together with Neulasta in an auto injector applied at the day two visit, which injects 27 hours later. I’ve had my first two cycles to date with B and N only. Yesterday I spent the day in a hospital for the first use of R which was a 6 hour infusion. Cycle 3 will begin the full treatment plan. Overall I feel ok with the major issue being fatigue. I hit a wall frequently in mid afternoon. Unusual for me. Another issue is mild nausea which I think has to do with my tendency not to hydrate adequately. I have to change that! Looking forward to much helpful info and support here, with my sharing my progress, and relevant tips. Thanks,
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drgrey
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Welcome. You sound remarkably strong for your age and long standing CLL diagnosis. Though perhaps you are understating your symptoms somewhat. At a guess you are in America is that right? It can help folks a lot on here to know what system you are under as things vary a lot from country to country.
You should find this a supportive and knowledgeable community. Do you have any more specific questions?
Thanks for your reply. I am an American residing in Southern California. I could be guilty of understatement of symptoms, a bit,
It’s part of my nature. I also should add that I have CAD and kidney issues, but I believe I have very good docs who help me manage these issues well. I should add that most of my training was in major teaching medical centers, and I have great confidence (some in my family say “too great) in conventional medicine.
Welcome! Keeping hydrated is especially important when in treatment. I'm not, but still got a speech about it last week from my hematologist. My bad, as a friend always says.
Has your doctor given you anything for the nausea? if so, it is important to take it on schedule, not after the nausea starts. It's hard to play catch up. If that isn't helping ask for something else. One friend discovered that it was not his FCR causing his nausea, but his nausea pills.
Good point. The medication is called Zofran in the US. The prescribing notes say take as indicated but I may be waiting too long giving the nausea a chance to catch hold. I’ll tank Tony doc about that. Thanks
Zoran (ay! Zofran) is very commonly used (I'm in the US). It works well for many, but staying ahead of the nausea is important. If it doesn't work for you after adding more hydration and taking it as directed, don't be shy about asking for something else. I just sent a Chat (PM) to you, as I am also in Southern California and there a couple of things specific to the area that you might find helpful.
Hi welcome to this forum. I am also a retired psychologist but I live in the U.K.
Like you I was diagnosed in 2011 and told treatment was pending around 1 year ago.
I am on the Flair Trial taking Ibrutinib and rituximab and doing very well.
I just wanted to say welcome to the site which has been my main source of support, education and advice since diagnosis and wish you well.
By the way I agree with what has been said here already hydration and taking medications at the right time is vital when in treatment if you want to avoid side effects.
Drgrey: I had 6 months chemo treatment 2 years ago. I also had nausea and Dr prescribed nausea pills for me. They really helped me . Also I took 2 bottles of G2. Gatorade with me for the 6 hour days. I froze half of Gatorade the night before and poured other half back in when leaving for treatment. Then drank water the rest of day . Water gets old after awhile so taking Gatorade kept me hydrated. I know G2 also has sugar in it, but I only know it worked for me. Will be thinking of you. Good luck with the rest of your treatments.
Good to know you are doing well with treatment. I too have been in stage 0 no treatment for 6 yrs latest blood draw indicated my numbers had dropped. My husband is a pharmacist and a huge believer in vitamins especially vitamin C I take 1000 mg daily. Im a female 76 yrs old living in the US upper Michigan. So many different treatments on this site puzzle me. My oncologist routinely draws blood every 6 mos. How or why were you given the scans you mention. I have found sea bands very helpful for mild nausea rather than drugs. All the best as you manage CLL
Thanks for the suggestion. I had been having scans on the average of every nine months or so, as a way to monitor my indolent lymphoma. The last scan was 6 months after the previous one because of the trace effusion that had been seen and because my oncologist retired and his parter who took over my case wanted a baseline for monitoring or care.
When you do 6 three week cycles of BR, does that mean you B infusion for three weeks straight with R shot just on days 1&2? How many days off do you have between three week cycles. I am getting close to treatment and need info to decide between BR and IB (Ibrutinib). I am a 71 year old retired engineer, but I am in good overall health except for CLL.
My treatment began with B infused on days one and two of cycles one and two. Midway through cycle two I was hospitalized for a day for the first infusion of R. Beginning with cycle three, I’ll receive infusion of B and a shot of R on days one and two. The N auto injector will be placed on my arm during day two treatment. It will auto inject on day 3. Each cycle is three weeks, 21 days. The cycles are contiguous. Treatment on days one and two and office visit with my oncologist around day ten. I’ll be starting the third cycle on September 4th.
I keep forgetting to mention Sea Bands. They are wrist bands that work on the principles of acupressure. They're about the only thing I ever recommend with a "can't hurt you". I have seen them work for kids who had never been on a school field trip because they got so carsick and they are often recommended for morning sickness. The cancer community has been slower to recognize how much they help some people.
I’m a lifelong sailor who has never need seasick. Always carried sea bands on my boat which were used with varying success by guests aboard. Since nausea is relatively new to me, I haven’t thought much about it beyond the prescribed Med and apparently I’m not even using that right. Glad to check out sea bands and appreciate the suggestion.
Welcome... I had BR 6 years ago, still in remission - hope it works well for you, too.
Downsides were a nasty infection after the first cycle - you seem to have avoided that - and skin rashes - quite common, but you don't mention any so maybe you are tolerating the treatment even better than most of us.
Thank you. I’m given Neulasta at the end of the second infusion of each cycle. That’s supposed to reduce the likelihood of infection. I’m just finishing the second cycle of six and will start the third cycle on September 4th. So far so good re infection. I had a very severe rash about 10-12 days into the first infusion cycle. At first the infusion nurse doubted it was due to the infusion but a dermatologist I consulted thought it was. Fortunately it cleared in about 10 days and didn’t reappear at all during the second cycle.
As a BR patient, I can say that skin problems - as reported on this site - seem to be a common side effect. I used E45 cream to alleviate the itching, and some of the worst affected areas (e.g. behind the knees) continued to be sensitive for some years after the treatment - indeed, I still have minor problems now, from time to time, which may - or may not - be linked to treatment. (My consultant offered to cease treatment after the second cycle, but I decided to carry on as the bloods were moving in the right direction, and decided I could tolerate the itching.)
It's very encouraging that your skin problem has cleared up - I do hope that continues - and that the BR works as well for you as it did for me.
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