Hello, I’m about to have my first line of treatment and there are so many options out there. (Very lucky) i have all the good mutation markers. I am leaning towards have venetoclax to start with , what’s the thoughts on this? as want to give my body the best opportunity possible. Is this the right path ?
Is FCR a treatment of the past? : Hello, I’m... - CLL Support
Is FCR a treatment of the past?
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Driverps1
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FCR is not a treatment of the past. In the UK FCR is still the primary front line treatment for most. In the US many Cll doctors still offer it as an option to young patients with favorable genetics and mutated IGHV because it can be curative for a significant percentage of people in that category.
There is a growing group of Cll doctors who do see FCR as a treatment of the past because they consider the new drugs as better therapy with less toxicity. But there are still many expert Cll doctors in the US using FCR for those who want to try for a long remission and have good genetics.
Venetoclax is a good choice. If it were me starting treatment today I would probably choose Calquence and then consider adding drugs like venetoclax to it later once we know more about what combinations work best.
Hi Jeff, Thankyou for your feedback , really interesting to know as hope I’m making the right choice of medication when there’s heaps of options out there. My mum had FCR 2 years ago and it basically killed all her good cells and now she’s lost her mobility and mind. After seeing that first hand it put me off chemo and she is only 70 which is still young. Do you know if venetoclax is good on its own or is there normally a combo? I suppose my doc will know that answer . Hope all going well with you ?
As a frontline therapy venetoclax is typically given with Gazyva, I think. There are a lot of ongoing clinical trials with venetoclax and ibrutinib.
Here is my amateur view. Venetoclax is the strongest Cll drug. But there is not much data on how long it will work.
Ibrutinib was the first so called novel drug and there is a lot of data on it. Ibrutinib might work indefinitely for some people with mild side effects.
So I think the safe, more conservative route, is to start on a btk drug like ibrutinib. The slightly more aggressive choice would be venetoclax, a drug that appears to be very powerful, but there is not much data yet to know how safe and effective it is. Both choices are reasonable.
I personally would not choose FCR in that situation, but would be a real option if I were young and had mutated IGHV Cll.
I agree with Jeff. My wife was on Imbruvica first and Venetoclax until the toxic effects became difficult to handle and apparently when Imbruvica stopped working. Imbruvica bought us some time and did some damage to the CLL removing all the enlarged lymph nodes and than Venetoclax came in to finish the CLL off. Many never have to even go to Venetoclax. I would go the conservative route with Calquence or Imbruvica and leave Venetoclax for the plan B to fall back on.
I agree, save some heavy artillery for later, if needed…
I am 13q mutated & was 63. My 2 specialists said i was a great candidate for FCR. Second choice was Ibrutinib. I got a port & only needed 3 rounds. Chemo was uneventful and am in remission 3 years. FCR is still a great treatment. Second opinion is a good idea.
Thankyou very much for all your guys advice and knowledge. There are some real valid points there to consider. I am thinking may take Jeff's route and try the ibrutinib first and have venetoclax as plan B. Thanks guys this means a lot to be able to talk to someone that has experiences such as yours, don't know where id be without this site! Hope you all having a good weekend? 👍
I agree with those who suggest getting your doctor’s take on your options. Some Cll doctors present patients with treatment options, which I think is great. But we still want them to help walk us through the options and, ultimately, tell us what treatment they would take if they were us. How can they ever expect we would be in a better position than they are to do a risk/benefit analysis of each option?
If you have the choice of calquence (acalabrutinib) over ibrutinib, I would choose calquence as it appears to be just as effective as ibrutinib with a less side effect risk. Ibrutinib is still a great drug though.
With your age and genetics (you have said your Cll genetics are favorable so I assume it’s mutated IGHV with 13q or trisomy), Ibrutinib or calquence could work for you for ten years or more without the toxicity of chemo.
I view it as almost a placeholder choice, that is, while they develop new drugs and research new combos, you just take a do the least harm approach now and bide your time on ibrutinib. I plan on adding venetoclax to my calquence soon.
Venetoclax is a great choice to. The good news is that if you truly do have favorable Cll genetics, most any of these options will work for you. FCR is tempting for its cure potential for those with good genetics. People like Dr Furman, who do not see any role for treating Cll with chemo, would argue that people with favorable genetics will get just as long remissions without chemo. But there are still a lot of top Cll doctors who do see FCR as a good choice for younger patients with mutated IGHV.
Do you know your FISH status and IGHV mutation status? The results of those tests can help inform your choices.
Hi Jeff, Thankyou for your response it’s really making me think about the next move I take . I am still waiting on my FISH to come back, should be next week or so. The reason I’m looking at having treatment now is my spleen has got upto 22cm , was discovered after ct scan for kidney stones. My thinking for treatment is buy some time with less toxicity as possible and then hopefully a new drug has come out by then
You are welcome driver. When you wrote that you have all the good mutation markers, I assumed you are IGHV mutated and have favorable FISH markers, so I am a bit confused since you don’t have FISH results. Do you know if you have your IGHV mutation status?
I think those two markers are very informative to your treatment choice. FCR wouldn’t even be in the discussion for me unless you have mutated IGHV with good FISH results, even though some people still choose FCR with unmutated Cll so long as their TP53 gene is intact. With 17p Cll there is usually some deletion of TP 53 gene rendering FCR and other chemo treatments almost useless.
The good thing about ibrutinib or acalabrutinib as a choice is that it doesn’t matter much if you have good or bad markers as both drugs work well, particularly as a first choice treatment, with all sorts of Cll.
Hi there. I’m in NZ also. I understood that options like Venetoclax wouldn’t be considered until someone had been through FCR treatment and then subsequently relapsed and then it is only funded for 2 years. Ibrutinib is not yet funded but you should be able to access it if you have health insurance.
I’ve been very happily taking Venetoclax monotherapy for over 3 years but (a) I’m on a clinical trial, and (b) I’ve had FCR treatments 11 times and subsequently relapsed twice.
I wish you well. You might also inquire about any clinical trials that might work for you. If it makes you feel more optimistic I’m celebrating 20 years’ survival next month. Happy lockdown.
Im in uk ..have been on w&w for 14 years and now first treatment obiutumazab and venetoclax ..seems to be doing the trick from v good blood results and no nodes palpable we shall see how long the results last ..but Haematologist did say there are lots of choices afterwards when the results do wear off ..even another go at venetoclax ..this isnt part of a trial
11 rounds. 5 in 2008/9, 6 in 2013 (the last 3 were classified as FCR Lite).
I too had this same decision to make 3 years ago. At the time I was deciding between FCR and irutinib. I chose FCR as I didn’t want to take something “forever”. Plus I felt more was known about FCR and I wanted to save the ever evolving drugs for the next time, if need be. I was considered young enough (64) and strong enough to handle FCR and was told it might not be a great option when another treatment is needed. I was prescribed 6 rounds but only made it through 3. My counts dropped dramatically after the first round. It wasn’t a walk in the park but it did the trick. Still in remission and living the best life I can in our Covid world.
Thankyou for all the info. There’s abit to think about and also have 2 daughters that I love so much, I have promised them that I will be in their lives for a very long time yet🙂Luckily I’m in a position to fund my own medication if I have 2. That is why I’m searching for the best possible drug there is out there as been only 47yrs old I want to be around for at least another 40 yrs 😂😂
There are so many amazing and wonderful people on this site and most of the stories have been so positive.
I guess all of us Cllers are luckily to be around in atime where modern medication is closing in on a cure for cll.
Stay safe everyone
Maybe you could discuss the options with your doctor. I settled for V&O (now available in the UK as a first line treatment ) as I really couldn’t face FCR unless I wasn’t able to have anything else.Cx
Hi Chris, thanks for your reply. Im the same as you. I saw my mum 2 years ago got through FCR and shes never been the same again. It really put me off chemo, although i know people have had good results on it.
It's not that FCR is a bad treatment, it's that we have more potent, less toxic options now. (Search up the E1912 study for proof.) The ~5% incidence of MDS/AML with FCR treatment was what concerned me most, so I opted for acalabrutinib when I started treatment 20 months ago (I was 47yo). Thankfully (so far) I've not suffered any pain or inconvenience from the treatment, other than having to remember to pop a pill twice a day. Now I feel better than at any time since diagnosis seven years ago. 👍
Hi to you again , One thing I haven't seen you mention are any FISH test results showing mutational patterns, which might rule out FCR anyway if in one specific group. Have you had this test?
Ka kite
Stephanie
Hi,My husband is 43, he also had to choose treatment for 1st time this year.
He decided upon fcr as there is more known about it, potentially curative (good markers) and if not should get good remission with all the other drugs still left as back up. Didn't want to take fcr if only option when older.
Yes it has a 5% risk but a 95 % risk of not developing those things, long term risk of v.o unknown .
He was in and out of hospital in 1st month but now hes so well halfway through it's been much better.
It's so hard to make the decision as no definite 'right or wrong' at this stage with so many treatments still so new, good luck with whatever you decide.
Thankyou
Hello Someoneswife, I’m going to start FCR end of Nov. does your husband have any tips how to best “prepare” for the FCR treatment to cope with it please?
Hi there,That's a really good question, but I think it depends on how you go. He was told some people are fine and can work through fcr - I guess that depends on your line of work, he was told to stay off for general infection risk (not just covid).
He is nearly finished now, starts last cycle next week if bloods OK. For the majority of his treatment he has been mostly fine and we have managed to do normal things including a holiday (this country), bike rides etc.
However the 1st month and last month he has had a bit of a bumpy ride with trips to hospital for temperatures, and after each treatment their has been nausea and vomiting for a few days (but then springs back).
So the main problems he could give you tips on are the nausea and infection risk, but you may not experience this or you may experience other things that he hasn't.
Ps his hair hasn't fell out, felt a bit weird at 1st and some dry skin lately.
I asked him what his tips would give and he mentioned how he has needed to have things to 'cleanse his pallete ' (mainly coke) as he has had a horrible metallic taste when nauseas. He has been given all sorts of things for nausea, especially after he wasn't sure if he had vomited back the chemo tablets (top tip vomiting into a seive 😆) but the thing he has found most useful lately is putting slivers of ginger in his tea. I should say he also had some constipation (given laxitives) so have plenty fibre etc, but at times has gone the other way, no advice for that one but hasn't lasted long.
So in terms of infection risk, 1st of all we were told his 1st month might have been reaction to rituximab (no source of infection found) but impossible to say. So if you feel achey / chills, check your temperature and if up get yourself to hospital everytime just incase. He then had a reaction to the antibiotics but that's just him.
In terms of reducing risk of infection, he was given a list of does and don'ts from hospital so hopefully you will be given one too, if not let me know and I'm sure I can dig it out (private message me though so I get a notification via email as don't always check this site) but the rest was down to me as part vigilant wife / part nurse - he just goes with the flo!
So these are the extra measures I put in place, no need to feel obliged to do same though -
I bought motion activated soap dispensers (have kids who am sure don't wash hands properly so didn't want to touch soap dispenser after them!)
We bought hepa filters for main rooms as one child not old enough to be vaccinated, to reduce any covid transmission in house, but make them lat flow test regularly too (even me).
If nothing else try something like 'microban' an antibacterial spray that lasts 24 hours. I wipe all handles, sockets and kitchen surfaces once a day.
I make sure I've washed sheets towels more regularly and dusted / hoovered a bit more (I'm not the most house proud usually 😅).
I also banned him from doing any dirty dishes , laundry or emptying bins (but he can still unload clean dishes and laundry from the machine - seems to forget that bit though 😉).
It's not that you can't do these things though, you just need to wash hands after, I'm just being extra cautious incase he forgets and these are things I can do to help.
However if touching something potentially 'germy' also involves fun we go for it - eg taking kids to fairground, just more vigilant on hand geling (always have some) when doing these things, I can wash dishes for him but I can't have fun for him , still important to have fun throughout!
On that note though I will say, the list from Dr doesn't ban 'intimate activities' (condoms advised) but I'm afraid I'd be very wary about full on kissing. It is rubbish I know but he has just come out of hospital again this month, this time definitely an infection (still not sure where) as ended up with low neutrophils again despite being on injections to boost them. Mouths are full of bacteria and I'd hate to be the reason he gets a bug despite all our other methods, but that's just a suggestion.
Other things we had to look up that weren't on the Dr's list where, no garden digging unfortunately (wanted him to keep busy doing our garden while off) and no live yoghurts, usually we have them but no 'good bacteria' for you while on chemo.
No swimming either am afraid.
And finally the most obvious but powerful tool is hand washing - I still had to remind him even after discharge from hospital to wash his hands RIGHT BEFORE he eats, always saying 'I just did them 5 mins ago' - but could have touched 20 things since then and eating.
This all sounds a lot and I think if we'd read this before he started we'd have felt overwhelmed, but honestly apart from the hospital blips, particularly 1st month, its been OK.
So if nothing else he'd say coke (but everyone's taste buds different) and I'd say microban spray and wash those hands.
Good luck with it, hopefully you'll be one of the people that sail through it and have fantastic response (hubbies wcc dropped from over 300 to about 5 in 1st cycle 🥳) 🤞🤞
Just thought of a couple other practical tips - get a dosette box with pockets for three times a day, also a pill reminder app on phone.Hospital often sends you home with a heap of tablets and no nice neat list of instructions when your at your most tired (we had to write it all out to make sense of it first).
You may be able to drive yourself to / from hospital appointments but you may find the antihistamines they give you to reduce reaction to rituximab make you drowsy so have someone take you initially to see how you go.
Finally have a bag packed or at least an idea of what you'd want to take if you do have to get checked out with raised temperature. You may find you'll be kept in a few days so have a puzzle book / charged phone etc at the ready, change of clothes etc and take your tablets with you.
Hopefully you won't need to but if you do at least you'll be prepared - hubby takes extra snacks as even when goes in just for the day for treatment doesn't feel lunch they provide is enough (but that's probably just him ! 😉) take care
P.P.S get your 3rd primary covid vacc (if in uk) before treatment starts if haven't already ( hubby has to wait until fcr finished but that's another story!) Fp3 or whatever irs called , mask for hospital trips, best wishes, Fiona
Hey there. I thought Pharmac wont fund venetoclax unless you a) had a previous treatment and b) had a relapse or recurrence. I had venetoclax recommended due to adverse responses to FCR, but my current situation is more probably a response to fludarabine than a relapse.
Im pretty impressed with the New Zealand haematologists. Pretty on to it is my impression.
Hi, yes that’s correct pharmac only fund ventoclax in NZ if 17 p deletion and Tp53 markers won’t work with FCR. Or you have tried other drugs and they haven’t worked. I have decided to fund this myself as going to take a combo which hasn’t been done in my region. Looking forward to it ! Hope all going well with you ?
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