My husband had his first treatment with retux... - CLL Support

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My husband had his first treatment with retuxin and bendamustine. ?

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AussieNeil profile image
AussieNeilPartnerAdministrator

Deb,

Bendamustine and Rituxan or BR was shown in a recent trial to be equally effective to the 'gold standard' of FCR for older patients and considerably kinder. How did your husband go?

Neil

deb1610 profile image
deb1610 in reply toAussieNeil

Neil

Hubby is 61. Had his first cycle 2 weeks ago. He threw up once and had the runs once until he figured out how to eat a little better. Nothing since, except fevers this past Fri, Sat, and Sun early am, but always went away and he was good rest of day. He has been on 60 mgs of prednisone, lowered today to 40 for this coming week, then 30 next week.

He started w 400,000 wbc March 26th, and is now down to 6500, Neuts: 5600, Lymphocytes: 500

Doc said since March 26th, 290,000 leukemia cells have been knocked out.

His second cycle of chemo is in 2 weeks.

He will probably miss the high of the steroids, and cause me much grief if he is unable to do as much.

Deb

fieldmeadow profile image
fieldmeadow

I have just completed 6 rounds of FCR. I opted for this rather than BR - but it was a close call. Would be very interested, therefore, to know firstly how old your husband is (or a general idea if you don't want to be specific) and secondly how he is getting on.

All good wishes to him on his journey and to you as you support him.

deb1610 profile image
deb1610 in reply tofieldmeadow

Hubby is 61. Had his first cycle 2 weeks ago. He threw up once and had the runs once until he figured out how to eat a little better. Nothing since, except fevers this past Fri, Sat, and Sun early am, but always went away and he was good rest of day. He has been on 60 mgs of prednisone, lowered today to 40 for this coming week, then 30 next week.

He started w 400,000 wbc March 26th, and is now down to 6500, Neuts: 5600, Lymphocytes: 500

Doc said since March 26th, 290,000 leukemia cells have been knocked out.

His second cycle of chemo is in 2 weeks.

He will probably miss the high of the steroids, and cause me alot of grief.

ivy39 profile image
ivy39 in reply tofieldmeadow

Hello fieldmeadow. What prompted you to choose FCR over BR? Thanks. Ivy39

fieldmeadow profile image
fieldmeadow in reply toivy39

Hi ivy39 - sorry not to have replied sooner but I was rushed to hospital from GP surgery with heart problem and was kept in until stabilised.

My consultant and I opted for FCR despite having existing cardiac issues (that have worsened since) because FCR appeared to give longer remissions for someone like me who is mutated and t12 without some of the less favourable indicators. But recent data appears to show that BR gives good results too and is gentler. In my case I wont be offered anything as strong as FCR in the future because of my new cardiac issues. However, I hope I will not require further cll treatment for several years to come !!

Our individual clls and our different medical histories and ages all require an individual approach to what treatment is best for us.

The great thing is that each one of us has a 'voice' and with the support and advice of medical professionals we can decide what is right for us. All the very best.

Newdawn profile image
NewdawnAdministrator in reply tofieldmeadow

Sorry to hear of these cardiac problems Fieldmeadow and your need for hospitalisation. Hope it's something that can be sorted and your treatment yields very successful long term results.

Newdawn

fieldmeadow profile image
fieldmeadow in reply toNewdawn

Thankyou Newdawn. One thing I should mention is that the cardiac doctors don't seem to think this further problem (dangerous rhythm disturbance) is related to FCR treatment despite the timing coincidence. So fellow cllers reading this can be reassured.

I'm now 80% stabilised and have lots more pills to take which should help in time. I need to rest so will let the weeds grow a little more !

ivy39 profile image
ivy39 in reply tofieldmeadow

Hello Fieldmeadow and thanks for responding. Sorry to hear about your heart but happy to hear that that is now mostly resolved. You are quite right, each case of CLL is unique and so will be the responses to various treatments. I live in Canada and, unfortunately, many of the newer treatments, and even some older ones, are not available or only under special circumstances. My particular concern regarding FCR vs BR is the damage those treatments will cause and in particular any damage to my vision, which is already poor. Whichever treatment I will eventually opt for, or will be forced to have, it will be my third and with each passing year treatments, esp. chemo, will exact a heavier price. I am still in remission after 7 years on Revlimid but am evaluating what might come next.

I wish you well in your fight.

Thanks.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toivy39

bendamustine/rituxan BR is not funded in Canada, we are trying to get it approved later this summer, however, it might be available in BC, I learned yesterday... on a case by case basis...

Bendamustine as a single agent, is available and funded for first line therapy, in about 50% of provinces...

Ofatumumab and chlorambucil combo is just about to be reviewed for funding... the process takes some time however, and the funding recommendations are not binding on the provinces... :-(

Quebec, does their own thing... they declined to fund bendamustine as I understand..

~chris

cllcanada.ca

Ragsgolf profile image
Ragsgolf

I have had 5 rituxan and one BR. I had been W&W since 2005 until a colonoscopy revealed lymphoma in the cecum. Thus my treatment began. After the first BR I had to have an MRI of my right arm which had been hurting for several weeks. The MRI revealed lymphoma in my bone marrow. I thought the pain was related to a fall that I had which was when the pain began. My WBC count is very low and so my scheduled treatment tomorrow may have to be postponed. My onc is checking to see if I will be eligible for ibrutinib. Since treatment I have had the expected fatigue which some days is worse than others. No other remarkable side effects. Oh, I'm almost 72 and other than CLL and now lymphoma, pretty healthy, rarely a cold and none in the last year. Hopefully your husband will do even better than I have. BR is supposed to be one of the better tolerated and yet very effective.

deb1610 profile image
deb1610 in reply toRagsgolf

Hubby is 61. Had his first cycle 2 weeks ago. He threw up once and had the runs once until he figured out how to eat a little better. Nothing since, except fevers this past Fri, Sat, and Sun early am, but always went away and he was good rest of day. He has been on 60 mgs of prednisone, lowered today to 40 for this coming week, then 30 next week.

He started w 400,000 wbc March 26th, and is now down to 6500, Neuts: 5600, Lymphocytes: 500

Doc said since March 26th, 290,000 leukemia cells have been knocked out.

His second cycle of chemo is in 2 weeks.

He will probably miss the high of the steroids, and cause me a lot of grief. LOL

Best wishes to you in your journey!

Deb

Janetfld profile image
Janetfld

I had 6 treatments of Rituxan and Trenada (br) followed by a neulasta shot three days after my treatments. I did very well. I think the neulasta shot was the worst. Side effects were flu like symptoms. I did not have any side effects from my rituxan and trenada. I have 17p and 13q deletions along with zap 70 positive. So as you can tell, I have poor prognostic indicators. My oncologist started me out with the pill lukerian. After 5 months of treatment, we backed off and my numbers began to climb again. I started six rounds of Rituxan and Cytoxian when my WBC reached 220,000. Tolerated these drugs very well. Then after 18 months WBC started climbing again. We started my third round using Rituxan and Trenada. It has been 31 months since my last treatment. Numbers are climbing again, back on watch and wait. Plan to try Rituxan and Trenada again. Have had very good quality life since all treatments. Immune system still pretty strong. My understanding is that it is very hard to bounce back from FCR. I have done very very well. I am 66. I believe your husband will do very very well using Rituxan and Trenada. Good luck!

deb1610 profile image
deb1610 in reply toJanetfld

Hi Janet,

Hubby is 61. Had his first cycle 2 weeks ago. He threw up once and had the runs once until he figured out how to eat a little better. Nothing since, except fevers this past Fri, Sat, and Sun early am, but always went away and he was good rest of day. He has been on 60 mgs of prednisone, lowered today to 40 for this coming week, then 30 next week.

He started w 400,000 wbc March 26th, and is now down to 6500, Neuts: 5600, Lymphocytes: 500

Doc said since March 26th, 290,000 leukemia cells have been knocked out.

His second cycle of chemo is in 2 weeks.

He will probably miss the high of the steroids, and cause me alot of grief.

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