So far so good.

[Racing1961]

I posted about 6 months ago that 1 round of FCR nearly killed me. My Hemoglobin dropped to 45 and I needed many transfusions. They decided to abandon treatment and was put back on watch and wait. After my appointment today, all bloods are still in normal range. Hopefully, the 1 round of treatment will keep it at bay for many years to come.

[PlanetaryKim]

Wow! Glad to hear your bloods are still in normal range. That's impressive after just one round of FCR.

[Racing1961 in reply to PlanetaryKim]

Yeah, I think it’s quite rare. He did tell me about a patient that had roughly the same reaction and is still good after 5 years 😊

[PlanetaryKim in reply to Racing1961]

Let's hope you too have a long remission.

[Racing1961 in reply to PlanetaryKim]

Thank you 😊

[cajunjeff]

That's good news you are doing well after one course only. I have soem out of the box thoughts for you that may or may not be helpful. I hope I am not being presumptuous in sharing them.

There are some trials going on now showing early success where a short course of fcr (fcg actually, but fcr and fcg are similar) is combined with ibrutinib. The early data suggests that there is gret synergy with these drugs. Ibrutinb attacks our cll in a different way than fcr, putting more pressure on our cll.

I would think one course of fcr is not likely to produce a long remission, otherwise everyone would only take one course. Everyone is different, maybe you fall in a lucky group.

I gather you are in the UK and ibrutinib is not available to you front line. Could you be eligible for ibrutinib now that it is shown you cannot tolerate the standard dose of fcr?

I assume your first reaction would be that you are doing well, why take another daily pill now?

My thinking would be, and I would want to discuss with my doctor, is why not put more pressure on my cll now when it is most vulnerable to attack and add ibrutinib?

It's thought that fcr can "select" for a more difficult type of cll to emerge. That is, fcr kills all the easy to kill cll cells and when cll comes back, its a cll variety more resistant to fcr and harder to treat.

Ibrutinb is known to work on all type cll cells. So why not go after your remaining cll cells now with ibrutinib and kill them before they take root and grow?

Its just a thought and something I would discuss with my doctor if it were me. The reports from the ASH meeting on i-fcg trial early results were very, very good. This is the trial where ibrutinib is added to three rounds of fcg (gazyva replacing rituxan).

My questions to my doctor would be these. Am I likely to relapse at some point after one round of fcr? When that happens will I be put on ibrutinib? If that is inevitable anyway, is there an advantage to starting ibrutinib now while my cll is most vulnerable to attack, stopping that more difficult to treat cll before it takes root?

Now I dont know if you would be eligible in the UK for ibrutinib, buts its worth looking into. You have a good argument I would think since you couldn't finish full course fcr.

Put another way, if you are going to need ibrutinib in the future anyway, are your survival chances made better starting ibrutinib now? I don't know that anyone knows the answer to that for sure, but I bet a lot of cll doctors think the answer to that is yes.

Good luck. jeff

[Racing1961 in reply to cajunjeff]

I think that because u had such a severe reaction to FCR that they are reluctant to put me in any more drugs at present. There was talk of Venetoclax at some stage as the side effects seem to be less harsh. To be honest, at the moment I’m not keen on any more treatment as it appears that I’m not tolerant to any of these drugs.

[JigFettler Volunteer in reply to Racing1961]

Important point indeed.

I think a search and a 2nd / 3rd opinion.

What does FCR extreme response say about your genetics?

Something to consider... the longer you leave further treatment the more information that will be available aid decisions. Things are moving quickly.

Jig

[Racing1961 in reply to JigFettler]

Exactly. In my case the treatment was worse than the disease. Hopefully in years to come, treatment will not be so damaging to your body.

[Jm954 Administrator in reply to JigFettler]

He had OK genetics. Extreme sensitivity plus low bone marrow reserves would be my guestimate.

Jackie

[Racing1961 in reply to Jm954]

Yeah, good genetics was mentioned. I’m in that range so hopefully.

[Jm954 Administrator in reply to Racing1961]

I hope you have a very long remission, you deserve it after your experience!

[Racing1961 in reply to Jm954]

Thank you 😘

[cajunjeff in reply to Racing1961]

ibrutinib and fcr work so differently I am not sure why your doctors think you would have a bad reaction to ibrutinib just because you had a bad reaction to fcr. I am sure they know best.

Ibrutinib actually helped restore my hemoglobin from 7 to 14, but everyone is different.

Adding venetoclax at some point sounds like a good option.

I was just wondering out loud if there was any advantage to hitting your cll hard now that it is most vulnerable. They are having greta results in the i-fcg trial.

It sounds like you had a very rough time with fcr . It makes perfect sense you would not want to try on another med while you are feeling better now.

[noeagaman]

I made it through four rounds and that one nearly killed me as well. It is good to hear that your blood counts are in normal range. Mine still have not fully recovered in a year and a half since treatment stopped. They are coming up very slowly. I am in remission though so that is good.

Chris

[Racing1961 in reply to noeagaman]

That’s really good for you. Maybe there are some people that don’t need the full 6 rounds to keep it at bay. Here’s to a long remission for both of us 😊

[GMa27]

I had 3 FCR rounds. Very uneventful and reached remission. Sorry you had such a bad experience but great you are treatment free since then. What are ur markers? 💕

[Racing1961 in reply to GMa27]

Why did you only have 3? My markers are all good, I think that’s why I’m doing so well only having I round.

[GMa27 in reply to Racing1961]

My experts test after 3. I reached remission so I stopped. So grateful to only need 3. 💕

[Iwrite]

My father is going through nearly same situation. Anemia after the very first round of chemo. His haemoglobin levels have dropped to 61 and has had transfusions twice.

Thank you for sharing your experience ! Wish you a long remission.

[Root65]

That is impressive! I am due my 3rd round of FCR next week. Mine was reduced due to impact on neutrophils. Had interesting chat with Dr, it is more of an art than a science when it comes to treatment dosage due to the individual nature of CLL within each person. Guidelines on treatment are just that, a starting point, a good Dr will tailor treatment to the individual. Really hope this continues to work for you 😊

[sue2412]

A good result eventually for you and long may it continue for you.FCR isn’t great for everyone I know from personal experience. I’ve had 4 cycles of FCR, which has led to neutrophic sepsis, chest and other infections, and numerous deferrals of treatment due to my neutrophic levels. Thank goodness for Gscf injections.

My doctor says I’m having a great reaction to the treatment but in his words “the plan isn’t to kill you”, he’s tailoring my treatment for last 2 cycles to just the rituximab. So fingers crossed that will happen tomorrow if my bloods are good enough.

[Racing1961 in reply to sue2412]

I think mine was abandoned because my neutrophils dropped so low. I hope you have a very long remission when your treatment ends. Good luck 😉

[Big_Dee]

Hello Racing1961

We all indeed take very different paths through CLL. It is at uncommon for people on FCR to have rough time with first treatment, but sail through following treatments, some just the reverse. It is great that your CLL team were monitoring your treatment closely. I had roughest treatment at start and wanted to know why with my bloods little below normal range I needed to take treatments 2 through 6. I finished all 6 treatments with few problems. I suspect in many cases how we handle treatment drugs is an allergic reaction. The rituximab gave me the most problems. I wish you a long stable remission and find a treatment which works for you if or when you need. Stay strong, blessings.