Anyone had these drugs? Comments please.

[Estate1]

My first treatment starts in January.

My Hem/Onc is prescribing Bendamustine and Rituximab as first line treatment. Dr said there is a protocol for 65 and under and one for 70 and older. I’m 68 so being closer to 70 that will be my course. (I believe dosage is lower). 2 days once a month for 6 months

I’m in Alberta Canada.

Thank you.

[caven]

Estate1: There was a posting in this blog two days ago by your fellow Canadian, Chris, which specifically addressed the efficacy of this drug combination of B+R in patients with your age characteristic compared to Ibrutinib and Ibrutinib-plus-Rituximab (I or I+R).

See: healthunlocked.com/cllsuppo...

Chris' posting, which I urge you to use as a link to the published data explaining the results, was lead-authored by my personal favorite CLL researcher (Dr. Jennifer Woyach of the James Center, OSU).

These data are only days old having a first presentation/publication date of December 1st. So, there's no reason your doctor would know of these implications. S/he would probably appreciate you drawing attention to the original paper.

What are the implications? The B+R combination is less effective than Ibrutinib alone. Thus, if Ibrutinib is in the formulary available to you then your doctor might determine that it's probably a better choice for you than B+R.

Caven

[Estate1 in reply to caven]

Thank you Caven. I did read the article and I’ve copied a link to provide my doc.

[Cllcanada Top Poster CURE Hero in reply to caven]

Not funded first line in Alberta... not approved for clinical use...

We need to deal in the here and now, Caven

~chris

[Estate1 in reply to Cllcanada]

Thanks Chris....I’m going to go with the “here and now” treatments available to me here.

[DMary]

I'm not second-guessing your doctor, after all I have no medical training, but I can share what my doc told me - I'm 63.

I was considering asking for BR because I want a drug I can use and then stop taking. He said if I did consider a chemo route that would be BR because of my age, but he doesn't advocate that since there are now non-chemo alternatives to try first.

Maybe you could ask your doctor when he prescribes the new non-chemo alternatives and why he believes BR is the best route.

[Estate1 in reply to DMary]

Thank you for your advice.

[GMa27]

I had FCR chemo. Our markers predict which treatment choice. I am 13q mutated. Chose chemo since I was under 65 as recommended for this type and wanted it to be over instead of a pill rest of my life. I was in remission after 3 cycles and was able to stop. Hopefully a long remission for both of us. I am 4 months post chemo. Doing great. Make sure they either split the Rituxin or give it very slowly...like 6 hrs+. 💕

[Estate1 in reply to GMa27]

Thanks for your input. My hope is not needing 6 months worth also. Glad your treatments have worked well. Cheers.

[TimHB]

A lot of new information just came out of the ASH conference this week that you may want to talk to your doctor about. I am 60 and was about to start BR chemo earlier this year on the recommendation of my hem-onc until I saw a CLL specialist and was encouraged to join a clinical trial with ibrutinib + obinutuzumab. Not only has it been very successful for me, but the buzz coming out of ASH this week is that it is the new "gold-standard" for first-line treatment. But of course it all depends on your unique situation. If you're not seeing a CLL specialist, you may want to ask your hem-onc for a referral for a second opinion before moving forward with any treatment. Seeing a specialist was a game-changer for me.

[Estate1 in reply to TimHB]

Thanks Tim. I’m gathering a good list of questions. What is covered or not covered by Alberta Health Insurance is an issue for me also.

[TimHB in reply to Estate1]

While in San Diego this week for treatment (I'm in a clinical trial at UCSD), I crashed an awards banquet at the ASH Conference (to see honoree Dr. Byrd from Ohio State who diagnosed me) and happened to sit at a table full of Canadian doctors. They were all very excited about ibrutinib and were grilling me on my progress and side effects, so I believe it's commonly available in Canada. Good luck!

[Estate1 in reply to TimHB]

I was aware about Ibrutinib and but when I quizzed my Dr about it she said it’s not used as a front line treatment here. (And not likely covered by my health insurance). So BR it is. I will follow up again though.

[TimHB in reply to Estate1]

You may want to ask about clinical trials, if they're available to you. I got into one. All expenses are covered for 3 years. No more fights with my insurance company!

[Estate1 in reply to TimHB]

Thanks Tim.

[Hoffy in reply to Estate1]

Some people go from Canada to the USA for clinical trials as well.

Learn Qs much as you can.

Watch videos from Dr. Kipps Dr. Furman and Dr. Byrd

Study the CLL society web site. CLLSociety.org

Be well,

Hoffy

[Cllcanada Top Poster CURE Hero in reply to Estate1]

Ibrutinib is quite restricted use first line in most provinces, and the restrictions vary from province to province. Second line Imbruvica (ibrutinib) is widely available has been for years...

Some Canadians travel to the U.S. for clinical trials, but the costs vary based on the trial. Some cover all clinical costs others may only cover drugs and some testing... the patient then must pay out of pocket.

Then there is travel and hotel costs etc.which aren't covered,

You might check with Cross CC, Edmonton or Foothills in Calgary to see if they plan any firstline trials in the New Year... they would likely be your best bet...

~chris

[Jem67]

Hi Estate1. I have just started BR. I have had one cycle so far and all went smoothly despite very high white counts (over 300). In less than a week my white counts are in normal range and haemaglobin up from 97 to 109. Platelets a bit low at 114.

I am in the UK so can only get ibrutinib second line. I am on a trial and didn't get the new drug, zanubrutinib, which initially I was disappointed about.

However, now I think treatment will be over in 6 months and I still have Ibrutinib in the pipeline.

I had a few days of feeling a bit off, but a week on I feel totally normal, whatever that is!

So, good luck with your treatment. Joy

[Estate1 in reply to Jem67]

Thank you Joy. Your journey with BR is relatable. All the best.

[BIGB1954]

Hi, I began the same treatment last week here in Scotland. I had the same discussion with my doctors on the merits of Bendamustine/ Rituximab versus FCR. I am a 64 year old male with history of various infections. B+R is apparently a more gentler chemo which I received over three days in hospital. My stay was extended because of variable temperature but am now at home. Side effects have been nausea, muscle cramps in legs, toes and fingers as well kidney function being impacted. I had the treatment over 1 week ago and am feeling more like myself again now. My next cycles over 5 months will be as outpatient. Let’s hope it continues on a positive trend.

Good luck,

[Estate1 in reply to BIGB1954]

Thanks BigB!

[Big_Dee]

Hello Estate1

I started B+R treatment Nov. 14th and do next round on Dec. 13th. You may want to read my posts on subject. I am 71, un-mutated and came up with mixed bag of doctors opinions on B+R or Ibrutinib. I am doing well on B+R

[Estate1 in reply to Big_Dee]

Thanks Big_Dee! I appreciate your feedback.

[Hoffy]

Can you wait on treatment ? 30% of CLL patients never need treatment.

Targeted agents might be available in the not too distant future in Canada.

Chris would be your best resource.

Be well,

Hoffy