my wife was diagnosed with Stage 5 CLL in early November and commenced chemotheraphy with FCR on 16th November. She will be undergoing 6 cycles of chemo over 6 months. I joined this community as it seems to have excellent resources and a very supportive community. I am still on the journey to learn more about this affliction and the implications of my wife's treatment and am reviewing all of the relevant posts on this site. I found cajunjeff's CLL for Dummies very instructive, thanks very much.
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Tehtarek
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Hi Tehtarek, welcome to the club. This CLL community is indeed helpful and you will find many past posts from members treated with FCR, which is still the "gold standard" (outside of the USA) for a large percentage of CLL patients. FCR can give long lasting remissions, such that around half of patients with the right genetic profile in their CLL cells will never need treatment again.
As with any treatment for CLL, there are side effects, and patients seem to vary in the severity of their experience. Although neutropenia is very common for several months, I had no bacterial infections either during treatment or in the 9 months since, while others have had many. As treatment with FCR progresses it's typical to experience more fatigue and nausea, though the latter can be managed with drugs. Do monitor your wife's temperature carefully and immediately report to the emergency number you'll have been given, should it exceed the upper limit (37 or 38 C). Do this without delay, day or night, and continue after treatment as long as her neutrophil count is below ~1 (your specialist will advise).
During and after treatment your wife will have regular blood tests. With FCR, expect B lymphocytes and neutrophils to stay low for some months, but be aware that the immune system can remain highly dysfunctional for 1 or even 2 years. Therefore develop a strategy to keep your wife safe by minimising yours and her exposure to Covid, influenza, and other bugs for some while. And don't assume that the Covid vaccine will be effective for your wife. She may be able to get a post-vaccination antibody test, or be eligible for an antibody infusion like AZD7442 if and when approved.
Welcome and good luck to your wife with her treatment. To the right of your post you should see the Pinned posts which you have already found useful. There is a wealth of information there about living well with CLL, diagnostics and immunisations.
We have lots of members who have been through FCR and if you have questions, I'm sure would be willing to share their experiences.
Welcome!I have never heard of stage 5 - but either way, that is just a guide for how many symptoms a person has and categorized. Not like organ cancers that rely on staging for prognosis.
I live in the USA and had FCR chemo in 2018. I hope she has a port. It saves veins and keeps hands free. She can always have it inserted in between cycles.
What are her markers? I am 13q mutated.
My chemo experience was quite uneventful. They tested me after 3 cycles and I was able to stop. Ask her doctor if that can be done. Many find they do not need all 6. I responded the first day- WBC went from 225k with large nodes, HGB 7.5 to WBC 60k nodes almost gone & HGB almost 9. Neulasta shot did its job. No side effects. If she has pain after Neulasta- try Claritin with out D- works for most.
I had slight tiredness for few days. One or two days of fatigue. Only lost my appetite few days after each cycle which only lasted a day. I kept subliminal nausea meds on hand. Used once.
I was fortunately retired so I just rested on days I felt tired and since it was 2018- I did all my normal activities during 2nd-4th week each month.
I hope your wife has as smooth a journey as I had. I removed my port about 5 months after I reached remission. In remission 28 months. 🙏💕
Hi GMa27, sounds like you had a relatively smooth experience overall! Yes Angie had a port implanted before her first cycle. I am not sure about her markers, I will check with the haematologist at the next session. Angie only had nausea during chemo but nothing since. Her appetite has been excellent and she has managed to keep reasonably active. The account of your experience is useful - I have some additional questions for the specialist now.
Hi! I had FCR in 2018. 6 cycles. I felt amazing on it - after a few days of nausea and fatigue. I was mountain biking (carefully) by Cycle 4. 3rd year on - still do! Not everyone has such an easy run I know, maybe 25%. Most will find it bearable, and can give good remissions.
As already said above, take special care for infection if neutropenia occurs.
Hello and welcome to you both.My husband had FCR almost 6 years ago now and, apart from some nausea, which wasn’t very nice, but only lasted 2-3 days each month, it was really not too bad at all.
I am sure you will both do well, with each other for support.
My biggest tip would be to make a chart for all the medication, so that you can easily keep track of what she is taking, and when... the doctors also found it helpful to make comments on each day, about any side effects etc., on the odd occasion when we needed to call them.
I have to say that, as a big fan of lists and writing everything down generally, I am finding it more and more important, now that I am in my 60s!😩
Yes - Definitely chart meds... Run into the 100s...
I also charted my symptoms - Nausea, fatigue etc - gave a score or 0 - 4, contemporaneously.
It worked well, and charted an increase in intensity over cycles - BUT assured me that they lasted 5 days ish each time - which helped me weather those days.
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