Starting Treatment

[12Caine12]

I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I would remain in W & W except for the fact that my Neurtrophil count is dangerously low, .8 as of yesterday, up from .5 2 weeks ago. My Onc/Hem wants to pt me on Ambruvica plus 6 month of rituximab infusions. Imbruvica will cost me $10K a year out of pocket, which is doable but will really stretch my budget. I think I'd rather do Chemo which is covered by insurance, finite (6 months), and seems to produce good results with my type of CLL. I would love to hear group members informative thoughts on this scenario. Thanks in advance.

[Shepherd777]

I think doctors feel chemo is pretty harsh on those 65 and over.

[Hidden]

if co-pay is the issue perhaps the Pan foundation or the leukemia society can help with it. On the other hand you might be a good candidate for chemo. However you might havr to switch doctors. Did thr doctor give you a choice

[12Caine12 in reply to Hidden]

Thanks for your response. Yes, she is giving me a choice. This path is her treatment of choice.

[Hidden in reply to 12Caine12]

has your doctor really explained why she wants imbruvica? she must have a reason

[Indolent]

I would look at a venetoclax/obinutuzumab combo, which is limited duration and FDA approved. Much less collateral damage than chemo and not a forever drug like imbruvica.

[Mldeterm in reply to Indolent]

I agree with this. I'd also challenge the use of Rituxan with Ibrutinib if you do go this route as it was not proven to show an improvement over the use of Ibrutinib alone. I'd also as about clinical trial options. My husband is on Ibrutinib + Obin + Venetoclax, the other arm of the trial is Ibrutinib + Obin. With these options you'd get the meds for free.

[ttomo in reply to Mldeterm]

How is your husband doing? I’m on the same arm in the same trial!

[Mldeterm in reply to ttomo]

Hs is doing wonderfully! Just started cycle 7 last Monday so he is done with the Obin already. Blood work is nearly perfect, platelets are staying on the low side at 119 but everything else is normal. How about you?

[Asclepiusone]

There do seem to be a large number of clinical trials out there with new and more advanced drugs.

[AussieNeil Partner Administrator]

I agree with Mldeterm that it is time for a second opinion. That's for these reasons; firstly because of the recent finding that rituximab added to Ibrutinib doesn't provide any benefit:

ncbi.nlm.nih.gov/pmc/articl...

healthunlocked.com/cllsuppo...

Secondly, rituximab is known for worsening neutropenia (as are all drugs used to treat CLL to varying degrees), but why add another drug that has the potential to increase your risk of infection when it has been shown to provide no benefit?

Finally, chronic neutropenia is not a recognised reason to start treatment per the iWCLL guidelines. I've been on watch and wait with chronic neutropenia for nearly 11 years and on G-CSF injections to boost my neutrophils for 18 months. It's worsening low platelet counts that will be why I start treatment.

If you would rather have chemoimmunotherapy, then 65 is the switchover age between FCR and BR, but plenty of fit over 65's successfully undertake FCR. With the right genetics, that gives them a good chance at a very long remission.

Given you live in the USA, do take the opportunity provided to you by the CLL Society's Expert Access program for a video appointment for a second opinion:

cllsociety.org/cll-society-...

Neil

[cajunjeff]

Its unfortunate that cost enters the equation at all when deciding on a treatment choice, but that's how it is in the real world with how expensive our treatment choices can be. In a perfect world what is best for our health is the only consideration. Since you write that you can make ibrutinib work in your budget, I will not take cost into account in my answer.

I think you have a very difficult choice to make, but fortunately two very good options to choose from. FCR might be curative for you. Ibrutinib might literally work forever for you by itself, or you can add to it down the road and get a very long remission, if not a cure.

At 65 you are on the edge of being too old for FCR, but my doctor would say if you are very fit as you describe, you would do fine with FCR.

As I recall you are FISH normal. If you were 13q or trisomy and mutated, I might go FCR. Being FISH normal, that might lean me to ibrutinib. I agree with Mideterm that Rituximab doesn't add much to ibrutinib, so I would ask my doctor why add it.

All in all, I agree with your doctor, I would go ibrutinib. I am on it and doing well. Your doctor evidently thinks it best for you, but in offering FCR appears to be acknowledging it's close call.

I personally like the idea of an oral pill that carries less risk of damage to my dna. But there are advantages to chemo as a limited term therapy, and with your markers, a possible cure.

I dont think I will be taking ibrutinib for life. I hope to add venetoclax next year and have the same or better chance for a cure or long remission as with FCR.

Its a long fight we are in for, I like ibrutinib because it does the least harm now while keeping my future options open. I would not argue with you one bit if you chose FCR.

Sorry, I guess that was all more equivocal than it was helpful. i just kept typing as conflicting thoughts popped into my head.

[GMa27]

Definitely recommend FCR. I was almost 64, mutated, 13 q and only needed 3 cycles. My port was wonderful. Hardly had any side effects from chemo. My Rituxin was spread over 2 days or have them administer at least 6 hrs...nice and slow.

I didn't want a pill everyday for who knows how long. And all the possible side effects. I was so grateful to have a choice.

I am 14 months into remission and continue to feel great.

Good luck! 💕

[Joaniebear]

I did 5 rounds of FCR from November 2018-March 2019, after having been W&W for 8.5 years. Have been in remission since. I was 65 when I started. Also mutated status. The tipping point for my doc was my increasing B symptoms (especially, fatigue and night sweats), worsening anemia, and neutrophils tanking. Because I had no other co-morbidities and was "fit", we decided to go for the time limited FCR with good hopes for a deep remission. I did have to get the neupogen injections after each round to keep my neutrophils boosted, and had a total of 3 blood transfusions. All in all, I handled the FCR really quite well. Best of luck to you, whichever path you take!

[Big_Dee]

Hello 12Caine12

Another option would be Bendamustine + Rituximab which is a milder form of chemo for those over 65 years. However I would really good along with AussieNeil, get second opinion. You sound like you are doing well except for your neutrophils which would take a hit with chemo. Blessings going forward.

[12Caine12]

A sincere thanks to ALL the replies! My current Onc/Hem actually is the one I went to to get a second opinion. Her evaluation wasn't much different than the my first Onc/Hem. But I switched to her because I felt she was more informative, was highly recommend by a couple of surgeon friends of mine, and I liked the way her group ran their operation. This doctor listens, and seems to take in consideration to my input. I have emailed her some of the issues you all have brought up and am waiting to hear back. On a second note, her office has already (2 days after my last visit) confirmed that I'm eligible for a grant through the Pan Foundation, which will cover 84% of my out of pocket expenses for the imbruvica, which is very good news! Lastly, some form of chemo as a first line treatment is what my gut is telling me I should do but the Imbruvica is very attractive since it's so much easier to administer and hopefully deal with. As my doctor said, they are making such rapid discoveries with treatment with CLL, it's very likely in a year or 2 there will be several more proven options.

[michaelmac]

I feel your (pocketbook) pain

I was in kind of the same situation myself minus the rituximab infusions

needless to say I could rant on about our (in the USA) messed up health insurance system ,,,, where you're forced to make health decisions by $$$$. But I don't want to start a big debate on that.

Anyway, to make a long story short I followed my CLL specialist doctors advice and went with the Imbruvica ,,,,, as mentioned here a number of times in other posts,,,, there is financial help out there ,,, although I have not found anything that covers all the costs.

Don't know if the above helps or not ,,

I hope everyone has as healthy a weekend as they can

Michael