My new CLL Treatment: My oncologist is... - CLL Support

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My new CLL Treatment

umpireman profile image
10 Replies

My oncologist is recommending a drip of Rituxan and Bendamustine for my CLL treatment to replace Imbruvica since I had heart issues with this drug. Is anyone else getting this treatment? If so, any serious side effects?

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umpireman profile image
umpireman
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Cllcanada profile image
CllcanadaTop Poster CURE Hero

Not sure what country you are in but Venetoclax and rituxan was just approved for second line use in the U.S.

~chris

umpireman profile image
umpireman in reply to Cllcanada

Thanks Chris. That is another option to consider. John

Motocost profile image
Motocost in reply to umpireman

Indeed, Venetoclax + Rituxan is the first option recommended to me by my doc (Jeff Sharman in Oregon) when it was discovered that it appears my CLL is becoming resistant to Acalabrutinib, which is a similar, newer Btk inhibitor like Ibrutinib. A Bendumustine oriented line of treatment would seem a much less desirable option comparatively, unless there were some specific reasons to do so. Could be your doc just hasn't seen the new FDA stamp for V + R, or like Chris says, isn't yet available where you are..

Njsailorgirl profile image
Njsailorgirl

Hi...I just finished 5 cycles of RB with Neulasta OnPro applied on the second day of Benda. The first few RB infusions were fairly easy but the Neulasta affected my bones with pain and muscle spasms. The RB impact accumulates finding it more difficult to handle. After #5, I said I had enough with the agreement that #6 would be needed after seeing the results of a PET. The PET showed excellent response so #6 was not needed and now in remission. I was given anti nausea meds if needed. Only took them a few times.

Marie

eric72 profile image
eric72

I had this treatment last year and had quite a rough ride of things. Doctors told me it was an easy option for people of my age group and that I would sail through it. Unfortunately they were wrong and at one point had to be admitted to hospital. However, it did the job and I am now considered to be in remission, though it has left me with serious infection issues and they have told me that could continue for another 12 months or so. Not everyone has the trouble I had and I do wish you the very best of luck. Regards Eric.

SueVG profile image
SueVG

I had six months of B/R, finishing in June 2017. While it did bring my WBC and lymphocyte count down I will now have to begin Imbruvica in the next couple months. Some people, you will read, have had long and good results. After each treatment I had a rocky few weeks but I knew there was an end in sight. Best to you.

tomhenry2487 profile image
tomhenry2487

My first question is are you seeing a CLL specialist? Generally they are far better at knowing the options to treat your specific disease type. There are several options other than BR to be explored first. Acalabrutinib has fewer side effects than Ibrutinib. Venetoclax alone or in combination with Rituximab is a choice as well. Since your issue is intolerance rather than relapse you may not be a candidate for Idelalisib. BR will likely fail if you are 17P deleted so unless you have had proper genetic testing it is impossible to pick the optimal treatment.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to tomhenry2487

tomhenry2487

Acalabrutinib is not FDA approved yet for CLL, might get it 'off label'.

I was an ibrutinib bleeder with A.fib and switched to Zydelig (idelalisib)/Rituxan ...it had no side effects for me... none... the rituxan had a bit of diarrhea... slight neutropenia, as expected.

Zydelig (idelalisib) has a totally different target than Bruton kinase... its a PI3K inhibitor... and is used as a bridge treatment between Imbruvica (ibrutinib) and venetoclax...

Duvelisib, currently under FDA review may also be an option, like Zydelig (idelalisib) it is however better targeted as a gamma/delta. Worth checking on a compassionate access for it...

Check here

verastem.com/patients-careg...

~chris

J-girl profile image
J-girl

I did R and B. Scheduled for 6 treatments a month or so apart. I did 3 and I asked him to wait a month because of stomach issues. So we waited and my lab work was good so we held the last 3 doses. I am officially in remission now.

larrymarion profile image
larrymarion

BR is not a good idea if you have the 11q deletion. This was proven by hemocs in the past few years. unfortunately i have 11q and was given BR and it was not effective against bulky nodes. As others have noted, you should go to acalabrutinib which doesn't have the afib issues of ibrutinib. Or try the V+R that was just approved by the FDA.

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