Before anybody tells me there are better, newer options out there let me say that I am in Australia and FCR is my only option first line.
I am 12 months watch and wait SLL with bulky nodes everywhere. Just had my second PET and specialist has said that it’s time to treat. Can anyone share with me their experiences, tips and tricks to get through FCR? I am unmutated trisomy 12 and probably don’t expect it to give me a deep remission. I am 49 yo and nervous as hell after reading all the horror stories. Any advice would be greatly appreciated.
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Waves01
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Read the positive stories. FCR treatment does not have to be a horror but we all respond differently. For me it was okay with the occasional blip and in remission 6 years now.Not going to go into great details as plenty accounts on this site for you to search, to answer any question but be positive. You can do it. 😀
I was also told that I am only eligible for FCR. However, I was also told if my Fish results indicated FCR would not give me a good response, then I would be eligible on PBS for Venetoclax etc. Maybe be worthwhile double-checking eligibility for newer treatments.
Hi Paul and welcome to our community. I see you've just joined us.
You are absolutely correct and have highlighted the essential step in Australia if you are approaching treatment. Ensure that your specialist has done both a FISH (Fluorescent In situ Hybridisation) test and a TP53 mutation test. Both are blood tests, though it's possible they may need to be done on a node biopsy for those who have the SLL expression of CLL/SLL. FISH testing is readily available in Australia, but there are only a few centres capable of doing TP53 testing. If you are 17p del (from FISH) or have mutated TP53, then you are unlikely to respond well to FCR or other older chemotherapy treatments and hence qualify for venetoclax and obinutuzumab.
IGHV mutation testing also isn't readily available in Australia, but currently that doesn't influence treatment choice, even though it should, because unmutated IGHV folk don't tend to have long remissions on FCR or BR, with some welcome exceptions.
Hi AussieNeil, really appreciate your thoughts on this….can you tell me if by some chance I was offered acalabrutnib and took up the offer instead of starting with FCR as a first treatment, would I theoretically be missing out anyway on those few years that FCR could give me in remission even if I am unmutated? Eg is OS an accumulation of all treatment options and if you take one out i.e. FCR, then that lessens the OS time?
Theoretically, it's quite possible to have FCR after treatment with any targeted therapies. So far, that option has been avoided, thanks to the growing number of other treatment options. Honestly, I would only suggest FCR be considered for those with mutated IGHV, where there's around a 55% chance of a very long remission. The challenges with FCR are that there's around a 10% chance of secondary blood cancers (AML, MDS) long term, plus FCR (and BR) select for tougher to treat 17p del and mutated TP53 sub-clones. Thankfully targeted therapies still work against these sub-clones, but they work still better if they are avoided.
We don't yet know the median remission length with combination targeted therapies, as we've only been using them for a few years. We know that BTK inhibitors (BTKis) can keep working for 10 years and counting now, plus it's often possible to switch to a non covalent BTKi when resistance develops to one of the approved covalent BTKi drugs.
I'd recommend asking your specialist if they would consider stopping your FCR early if you reach a deep enough remission. Doing so would spare your bone marrow and reduce your risk of what I mentioned earlier, but at the possible cost of a shorter remission. Some of us respond exceedingly well to FCR, so the CLL tumour is quickly vanquished. Others need the full 6 cycles.
Hi Waves01 - I just finished 6 months of FCR this past June and my experience, overall, was very good. I’m now feeling excellent with blood results back in normal except lymphocytes which will take some time to move back into normal. If you look at my past posts, you will see that I provided a cycle by cycle update of my journey. Hope it is helpful for you. Best of luck! 👍
I am also Trisomy 12, mutation status unknown and had 6 months of FCR and except for a couple of things it went pretty well. I was tired for about 3 days afterwards but got back to normal well before my next cycle. It took a good 6 months before I felt totally back to normal after treatment but during this time I resumed most activites as before. I got 3 1/2 years of remission and I have been on Ibrutinib for 4 years now with great success. I am now into my 11th year since diagnoses and am doing well. I know everyone reacts different but keep yourself informed and ask lots of questions and stay healthy.
Hello Waves01. I had a bad experience with FCR, but I hear that is kind of rare. It started off OK, but after the fourth round things went down hill fast. It turns out that I was allergic to one of the chemo drugs. My blood counts went down to almost zero and I spent two weeks in the hospital and then three months of visits every few days for different blood infusions and shots. It did put me in remission though and I have been good for fours years now. I still need IVIG because my blood counts have not returned to normal, but I am feeling pretty good.
I posted a lot about my experience so you can read that if you want to.
There are many good posts on here of how to prepare and get through FCR.
My husband just finished 6 months 1st line fcr last November.
The first month took a bit of getting used to it and was really worried as had been told the effects are cumulative, so we imagined him being in a terrible state by the end.
But actually after that 1st month he was so well most of the time that we were even able to go on holiday which was such a boost.
He was sickly for a few days each month but nothing he couldn't handle. He also had a couple of episodes of fevers so we sent him to hospital to be on the safe side, sounds scary but the main things is he got through it, and that was him, everyone is different.
I had FCR in 2018 aged 62. I was fearful of it to the point of phobic, and I got a 2nd opinion too - who said FCR! I was hoping for a BTKi.
Week 1 of cycle 1, I was hospitalised due to reactions of various kinds. Worried me - but not the Haem Team. I had a rigor and a fever reaction to the Retux. I also dropped my blood pressure - the first Retux infusion had to go in at the slowest drip rate they good manage - and then I was having recovery breaks.
So that was day 1 to day 6.
Day 7, I woke feeling amazing, All my CLL symptoms vanished, I felt normal and that was that for the 6 months. All subsequent infusions were fine. I felt mildly nauseous a few days per month. Cycle 4 I was back pedalling my bikes. I got a PT and my fitness and strength improved massively during FCR. I just chipped away at it, not too much not too hard - took it like medicine. 6 days per week. Working out at home - no gyms! In my case my white count went very low.
I was told 25% approx will feel fine on FCR, in fact most will manage it OK. For some - as you will hopefully be advised - FCR can be tricky.
Go forward with confidence.
FCR is the best known of treatments - its been around a while!
I was treated with FCR five years ago when I was 69. I achieved a partial remission after 5 rather than the normal 6 treatments. For me, the worst part was actually taking the F and the C - that was OK at the start, and became progressively less pleasant (as if my body was saying 'why are you poisoning me?' There is a massive advantage, in that once the treatment is done, you don't have to take a drug on a regular basis, with its own potentially unpleasant side effects - you can just get on with your life.
Otherwise, I recall an issue with the anti side-effect drugs co-trimoxazole and allopurinol, which caused a nasty rash. (They were replaced or eliminated and the rash disappeared). Apart from that it has all rather faded into the mists of history.
I am a healthy 63 Yr old male. On W&W for three years then started FCR treatment in November. I just completed cycle 5 . I will be finished treatment by mid April. The first round was a bit rough. Lack of sleep, weird nightmares, flu like nausea for about three days. But much easier than I imagined going into treatment. The subsequent cycles have been quite uneventful. A couple of days of low grade fatigue then back to normal. The key is to stay hydrated during treatment. Hopefully you are fit. Anecdotal evidence on this site indicates a much better experience if you are healthy and active. Continue to exercise, avoid any alcohol and be kind to yourself if you are feeling low mentally and physically.
I am on round 3 of FCR - like you I had hoped for the other non chemo options- particularly as I am in my 70 s. I have to say apart from the actual three or 4 days of the treatment week I am feeling great- back to walking and gardening without getting out of breath- feel like my pre CCL self! So best wishes that you also get on the road back to normal .
Hi there Waves. Well, I was on W&W for 18months following diagnosis and went into FCR 5 months ago. I’ve now just got 2 monoclonal IV to go. Like you, I felt much trepidation but the process is, overall, okay. Frankly, it was such a relief to see the rapid reduction of the enormous uncomfortable lymph nodes under my jaw and axilla, that kept me going! As has been mentioned, we all react differently, but apart from nausea and some vomiting over the chemo days and a few days beyond, and general fatigue, it was pretty okay. Get anti sickness meds from the get-go and just tuck yourself up, read , take a stroll whenever you can. Be gentle with yourself. Once the 4 months chemo was done, the ongoing Rituximab hasn’t caused any probs really and now, 5 months through treatment, I feel better than I’ve done for several years. I wish you well and send all positive wishes ⭐️
Everyone is different , I can report on parallel experiences.
I’m also in AU. I had FCR for CLL in 2017 age 67.
I wasn’t watch and wait. I’d been feeling run down a while, then down quickly. Went from emergency dept with rubbish blood condition, into transfusions and immediate FCR, so started from very poor condition. Had a small reaction in first treatment but they slowed it down and proceeded thru ok so far as actual treatments went and got thru all 6 ok with just a bit extra fatigue each day and couple days after.
Outside the treatments I had an apparently bad run of side effects. First, it’s very important to pay attention to your temp. , I had two spikes and needed to go back on prednislone to calm that response. (I’d not really been sick before and didn’t realise being a bit colder than usual was on the way to a fever). This is apparently pretty common. Also common are mouth ulcers, I had only a couple and were readily fixed with an over-counter med. Also fairly common, my heart went into atrial fibrillation , which I didn’t register , but was picked up by Dr and needed a DCR to fix. Also fairly common is shingles which came on after the treatment had completed , fortunately just half my back affected. Not common, I picked up an “atypical pneumonia” which took several days to get on top of. It’s apparently NOT usual to have quite so many of these common issues as I did, so don’t be alarmed. Despite them I mostly felt ok , really only felt sick a few days tho did loose more of more not very good fitness.
My daughters father-in-law , same age as me also has CLL, was on W&W , he went onto FCR treatment almost same time as me, also in regional Victoria, but in better physical and blood condition. (i was generally active, he’s a full-on farmer.
He had just one temp spike , and also had ulcers but his were worse than mine plus a bit of nerve damage occurring and his Dr stopped treatment after 4 rounds.
He was rather less fatigued than me throughout, is still in remission after 4yrs.
Mine returned last year and I’m back in treatment on Venetoclax & Rituxamib. I’ve had a couple of glitches (again, and again apparently unusually) but still feeling ok and again recovering reasonable energy.
Lessons from us are
- be as fit as you can be and keep up activity ‘cos it’s hard work re-building
- if you feel a bit odd , check with your specialist, or treatment place, they are really responsive, and it’s important to get treatment assistance quickly if it is a problem.
- newer treatments keep coming - Venetoclax came onto PBS for me while I was in remission!
Overall, yep we’d rather not had this experience, but the health system here is good , service providers are totally caring and FCR worked for us when we needed it.
My husband had 6 cycles of FCR in 2020, he’s a similar age to you, IGVH unmutated, and no TP53 issues. Have a look at my posts, I tried to cover each cycle in some detail.
My husband ,is nearly 7 yrs post FCR ,life saver as far as I'm concerned.FCR was his only option,yes he had a couple of rocky times , but all in all he really did ok.Jenny uk
Hi, I am responding for my husband who had the full treatment in 2019 and 2020 ending his FCR just when COVID started. We were in Geneva, Switzerland and also had no other options. I looked for trails in nearby France and Germany to find a newer better drug but to no avail; we decided the travel would be too tough. SO: it was fine. The first dose they have to watch carefully due to the flood of medicine into the system; after that he sailed. He was tired usually after the second day of treatments and he generally did not have his full energy throughout the 6 months but it wasn't bad at all. We moved to a plant based diet during that time (and here we are happy we did). Once he had nausea but that was it. He did all 6 treatments and now he is in 'deep remission' as his doctors indicate. He has regular blood tests and so far, no issues. Keep steady. You'll be relieved when the nodes disappear and they do quickly. And if you can, sit back and watch the show. You'll be ok. It's just another journey. Good luck and thinking of you.
Hi there, I was diagnosed at the beginning of 2018 and went on w&w. At the end of 2018 my wbc rose dramatically and I started FCR February 2019. In the main I felt absolutely fine, I did feel a bit tired and nauseous on day 5 of the meds and tired for the rest of the week but soon recovered. My only problem was my neutrophils which dropped dramatically and I have to have GCSF (Zarzio) injections which gave me back ache. I am still in remission and feel fine. I do hope that it all goes well and I'm happy to help in any way I can. X
I had FCR at the age of 49 as well, in February 2022 I am two years post. Being in Canada it was my only option for first line, I probably could have fought for Ibrutinib but looking back I’m glad I listened to my specialist. But I was manic for about two months before I started looking at options, delaying treatment. I was actually still researching options on the drive into my first infusion, I was very fearful of FCR and having to start treatment.
The week of transfusions I did have a lot of fatigue and nausea. But once I got past that I was able to return to exercising and daily activities(modified as treatments went on.) As you can see there have been a ton of positive outcomes with FCR here.
( I worry about everything!!🤣) and you’ll find you are stronger than you think!
My husband had FCR in 2015 and it really wasn’t too bad at all. I won’t lie to you and say it was completely easy but, apart from about three days of nausea during some months, I think he would say it was completely doable. Apart from those three days, he was out cycling and felt pretty good. Itchy skin was a feature too.
The hospital staff will look after you. My tip would be to make a treatment chart, to keep on the fridge door! We found it really helped to keep a track of what to take and when.
Hi Waves, I am also SLL and currently in watch&wait for past 2 years. Can I ask what the indicators were that led to the decision to treat now? (I’m still trying to gather information about my prognosis- though I understand it is different for each patient) Thanks!
Hi. My specialist said that my SLL is basically now spread to every node in my lymphatic system. The biggest is 4.9cm in my abdominal and the rest are around 3.5cm. They have grown on average about 1.5 cm over 12 months when I was first diagnosed so not super fast but they are on the move. My spleen is within normal range size wise. I don’t have any b symptoms and my blood work is in normal range. I probably could keep going for a bit longer but the nodes in my armpits and neck are starting to cause movement issues. Hope this helps.
I trained for a half marathon while on FCR and was in my early 60s. You will be fine and when you come out of remission you will most likely have access to the newer targeted drugs.
Give me FCR any day rather than BTKi. Had FCR in 2015, sailed through it a few off days but nothing worse. Got 4.5 years remission then put on Ibrutinib, had lots of side effects and was stopped after 18months due to finding I now had vaginal cancer and rectal cancer, which I believe was caused by Ibrutinib (not confirmed). Just finished 6 weeks of chemo and radiotherapy and awaiting results. I would never take BTKi’s again. Good luck with FCR.
The first hematologist/oncologist that I spoke with told me the same thing. He also stated that it would be 10 years before there would be any new considerations. That was July 2015. Need I say anything in support of the dynamic for advances in CLL since that time?
You stated "I am in Australia and FCR is my only option first line". If you are willing, please share the basis of your conclusion.
I also see from your post that you are not seeking encouragement for newer better options, however, I am under the impression that Australia is a front runner in cutting edge CLL research. I believe that it would be worth reaching out to both the research and patient advocacy community given that the latest data supports more desirable outcomes with novel treatments for those with unmutated IGHV.
Although FCR may work well for you, I anticipate more support from our community in resisting the urge to let you off so easy with the acceptance of FCR being the only option.
Please consider contacting cllsociety.org and Patient Power to seek out possible resources for alternative treatment options. Even though these organizations are U.S. based, they are networked internationally.
Our Ventaclax Pioneer Deborah Sims is an Australian. We know that you people are of the toughest and smartest most persevering on the planet of which some reside on this forum.
Unfortunately in Australia, unless you can access a clinical trial or chemoimmunotherapy won't work for you because you have 17p del or mutated TP53, your first line treatment will be a chemoimmunotherapy treatment like FCR. That's sadly still the case even if you have unmutated IGHV and are statistically unlikely to achieve a long remission on chemoimmunotherapy. Your second line treatment can be a targeted therapy. This is commonly the situation in nearly all countries outside of the USA. It was only recently that the situation changed in the UK.
I was able to access a combination targeted therapy treatment via a since closed clinical trial just over 2 years ago, but still faced a 1 in 3 chance of being assigned a chemoimmunotherapy treatment, which at my age would have been FCR.
The challenge is that most countries in the world have some form of universal health care, so to gain access to newer treatments, pharmaceutical companies first have to prove that their new treatment provides a better outcome than the current "gold standard" treatment to the approving authority. (That's typically the equivalent authority to the US's FDA). With CLL, superior outcomes can be fairly readily proved for targeted therapies when someone has 17p del or mutated TP53. It's harder to prove for unmutated IGHV.
Also, commonly a huge sticking point is that approving authorities understandably want the pharmaceutical company seeking to have their drug approved, to provide evidence that their treatment is better than the currently approved CLL treatments in a head to head comparison. It doesn't help at all when a pharmaceutical company chooses an old drug like chlorambucil as the drug to better, as was the case with obinutuzumab approval requests! Pharmaceutical companies are understandably very reluctant to do a clinical trial for the small CLL market in most countries. That leads to approval delays of many years while long term study evidence gradually accrues, typically from US trials, along with direct comparison trials by the German CLL Study Group. The situation is not helped by the fact that you can't compare outcomes across different trials. The best evidence is from randomly assigned patients to different comparison arms in the same trial.
Yes I agree, and it is more complex than the at a glance perception.
Is obinutuzumab approved in Australia for front line?
Before venetoclax became available, one strategy that I considered was to treat with obinutuzumab initially to obtain a short term remission, high tolerability, and a low DNA adversity profile, in hope that the remission would provide some quality of life improvement and allow enough time for FDA approval for treatments of higher efficacy. In addition, it would have also allowed me access to the novel treatment as an approved second line therapy upon relapse.
At that time there was also enough data showing that patients having not been previously treated with FCR were providing better outcome responses.
Obinutuzumab is approved for use with venetoclax in Australia for first line therapy, but only if you are 17p del or TP53 mutated . Given venetoclax was the result of Australian research which began back in 1989, it's been a long frustrating time getting that venetoclax approval, which happened in late 2020.
I remember back when US CLL patients were first going through rituximab or obinutuzumab treatment or perhaps one cycle of BR or FCR, so that they could get their insurance to cover access to ibrutinib. The US does have the advantage of off label treatment IF you can get your health insurance company to agree. I think it's fair to say that generally only CLL specialists know how to successfully argue their patient's case for off label access to drugs not yet FDA approved for CLL, e.g. Brukinsa/zanubrutinib.
No, but ibrutinib monotherapy was made available in Australia for CLL second line relapsed/refractory therapy in December 2017: m.pbs.gov.au/industry/listi...
"Venclexta (venetoclax) PBS listed as first line therapy for Chronic Lymphocytic Leukaemia (CLL) patients unfit for chemotherapy"
Nice to see the acknowledgement that
"VENCLEXTA was developed out of the Australian discovery that a protein called BCL-2 helps CLL cells survive. Blocking this protein helps to kill and reduce the number of these cancer cells1,2,3"
Some of us were willing to treat with approved less affective approved drugs knowing that we would then get the better drugs second line upon failing at the same time avoid the harsh effects of FCR.
Hmm…we have universal health care in Canada, and in my province (Saskatchewan), ibrutinib was absolutely recommended to me in 2020 as first line treatment, given my markers - specifically, being unmutated (otherwise no bad markers - just 13q deletion, which I understand is a good marker). I did have the option of obinituzimab (plus chlorambicil I think it was at the time - was a couple of years ago), but FCR was not really recommended at all. I was still in my 50s and otherwise pretty healthy at the time, so I don’t think “frailty” was a consideration. Perhaps there are also differences in other provinces within Canada. At any rate, it’s really eye-opening to hear about the differences in treatment recommendations among countries like CA, AU, UK, etc. I am always learning something on this site!
Importantly, you've highlighted why it is so very desirable to include our country of residence in our profile. It saves the embarrassment of recommending a treatment to a member, who would very much love to access it, only it's not approved/funded where they live!!
The major difference between Canada and Australia is that while we used your universal health care system as the major influencing model for Australia's Medicare system, once our Therapeutic Goods Administration approves a drug for our Pharmaceutical Benefits Scheme, reimbursement is not dependent on provincial funding. It's funded via a federal tax Medicare levy, (which actually needs assistance from other federal tax revenue). Chris (CLLCanada), who is still the major contributor to our community content, needed to relocate to British Columbia when he needed treatment, as it wasn't funded where he lived. It's particularly tough to have to relocate away from family and friends for treatment!
I was diagnosed in 2010 aged 44 and I did 5 rounds of FCR in April 2013.
FCR was really the only treatment offered and I was nervous at having chemo. Yes I did have a few days each round where I felt and was sick - make sure you have anti sickness pills. I had a bmb and achieved MRD neg and I've had an amazing almost 9 years remission. Not bad going for being unmutated!! I never expected to get that long neither did my consultant.
I have just started Acalabrutinib (Feb this year) due to increased nodes and symptoms.
The only issues I've had is that my immune system has not fully recovered but I'm on anti virals and antibiotics and have been since 2013, but other than that FCR worked well for me.
I hope your treatment goes well and you receive a long and happy remission.
Hi Waves01, so sorry you have gotten to the stage of needing chemo. I did almost 6 months of FCR in 2017. I did write a couple of posts about my journey. Thankfully I still feel great and my bloods are good. I’m moving to Brisbane next week (I’m a kiwi, currently still in NZ). Please message me if you have any questions, or even if you need some reassurance. This site really helped me throughout treatment, pre and post. There’s a wealth of knowledge here, and support 24/7 too. Wishing you the very best. 😊
What a wonderful group of people you are!! The support and positive stories have helped immensely with my nervousness for FCR. I wish you all well with your journeys.
Hello, I’m 6 years on from FCR & feeling great! I was also very fearful going in to it. My neutrophil count dropped very low so I was quite worried about infection but was able to carry on working on non treatment weeks & didn’t have any major problems. I felt washed out & nauseous for a few days every month but was fine then until the next treatment. The huge lymph nodes in my neck disappeared with the first treatment & I felt amazing!
The actual process was very boring being stuck on a drip for the whole of each 1st day. I recommend lots of puzzle books etc, but it needs to be something that you can pick up & put down & don’t need to concentrate on as a) you’ll be sleepy from antihistamines & b) you keep being interrupted for monitoring of BP etc. I got addicted to a game called 2048 on the ipad!
I was on the FLAIR trial & was disappointed to be assigned to FCR & Ibrutinib but actually getting it all over in 6m was a good thing in the end.
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. Given venetoclax was the result of Australian research which began back in 1989, it's been a long frustrating time getting that venetoclax approval, which happened in late 2020.
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