Ibrutinib+Rituximab

[jackhammer]

Hi All,

I am due to entered onto the FLAIR trial (SLL) and if accepted will either have FCR or IR. May I kindly ask our knowledgeable community that once the initial 6 months of Rituximab is over, if I ended up on I+R would I be able to still maintain my gym protocols?. Currently and fortunately i work out vigorously 3/4 times a week at 2 hours a time.I elevate my heart into the higher levels 140-160 ppm. I find this works for me and deals with my stress and general anxieties.

Will I still be able to do this if on Ibrutinib for 6+years?

Best regards,

Jack

[Dinasantos]

Hi Jack,

I am starting FCR plus Ipi-145 or ibrutinib ( I have not decided which one yet), and I was advised not to go into a public gym as the risk of getting all kinds of infections is high but to exercise/walk as able either at home or outdoors. I am planning to buy a treadmill when I start treatment. Best of luck with your treatment.

[jackhammer in reply to Dinasantos]

Hi Dinasantos,

Many thanks for your reply and also good luck with your treatment. I am aware of the gym risks during infusions. My point is the aftermath when hopefully things get back on a more even keel, is there any reason why one cannot exercise vigorously whilst taking a maintenance dose on Ibrutinib?

Best regards,

Jack

[gogscll]

I think it will depend on whether you experience the bone pain that can be associated with ibrutininb and how bad it is. My dad has been on ibrutinib since January and he is sore/stiff most days. Wishing you all the very best with your treatment.

[lapermone]

One would hope that since you've conditioned yourself that your bones and muscles are in better shape than most. Ordinarily a guess would be that if you did experience the "arthralgia" listed and bone pain reported you might avoid them or have only minor or tolerable levels that one would hope you could work through. Trouble is no one knows. No study mentions what shape the participants were in at inception.

Just curious about the six years you mention. Stated in the trial???? No definite "dose end" is listed for ibrutinib in general clinical practice, but that could be US.

Best, beth

[jackhammer in reply to lapermone]

H i Beth, many thanks for your reply.

Just quoting from the trial paperwork" if your cll/sll can still be detected then you will continue treatment with Ibrutinib for 6 years"

I think your right there Beth, quite a few questions on that point!

Best regards,

Jack

[mchilds]

I have done my 6 months of Rituxan and continue on Ibrutinib for a total of 9 months. I am an elementary P.E. teacher and have not missed a day of work and feel great...Not sure what the future holds but I hope it continues the way it is!

[jackhammer in reply to mchilds]

Many thanks for your reply and what you tell me is very positive and encouraging!

Long may it continue1.

Best regards,

Jack

[Woodfield]

Hi Jack,

I'm getting ready for a full Ironman race this weekend in Tempe AZ. After 6 months of Bendamustine/Rituxin 2 years ago for my CLL I started Ibrutinib 6 months ago and feel great with little to no side effects. Two marathons along with 2 Half Ironmans in the last year have gone well. At 56, I'm not going to let my CLL and the treatments slow me down. You shouldn't either!

[jackhammer in reply to Woodfield]

Many thanks and excellent news! You certainly are pushing hard!! Once again extremely positive and encouraging!.

Long may it continue!

Best regards,

Jack

[debs24 in reply to Woodfield]

Hey Woodfield

Just wanted to wish you good luck for the Ironman!

My husband is the Ironman athlete in our family but I'm a dedicated Iron Supporter (for "supporter" read travel agent, accounts manager, nutritionist, physio, bag carrier and cheerleader!). He's competed in 3 half and 3 full Ironman races this year, including 2 world championships - in Austria for the 70.3 World Champs and in Hawaii just 4 weeks ago for the full Ironman World Championship - we've travelled to some great places and I feel as though I've been with him every step of every race (I often tell him that spectating at these events is almost as hard as competing...he ignores me!). However, I genuinely have HUGE admiration for anyone who competes...but you get extra kudos! Have a great race!!!

Debs.

[wroxham-gb in reply to debs24]

Crikey Debs,

You must be worn out!

Best wishes, sue.

[debs24 in reply to wroxham-gb]

😊😊 Have had plenty of time to recover since the races I mentioned but it was great fun - fantastic experiences and amazing memories!

I love to travel (you may have guessed!) and my husband is keen to enter more events so we're now working on this year's plans.

We already have trips booked to Florida, Staffordshire, Austria/Italy and Barcelona with probably a few more short trips/long weekends squeezed in wherever possible.

I honestly believe that time is one of the most precious gifts. I guess it's unavoidable that much of our time has to be used up by the "routine" stuff - work, shopping, DIY, etc. but, wherever possible, I try to grab any opportunity to visit new places (both here in the UK or further afield), meet new people and build memories which will last a lifetime.

Hope you are finding time to do whatever makes you happy! 😊

Debs.

[wroxham-gb in reply to debs24]

Do not blame you Debs. Enjoy.

Sue

[diandgord]

Replying to your question regarding exercise and ibrutinib. My husband is 68 now, been on ibrutinib about 16 months. He does not go to the gym but is very active doing yard work, in fact we just purchased a foreclosure home and he is doing rehab work in and outside the house. That said, he does have muscle spasms and bone pain, when it is more severe he just cuts back on his activities but most times he just ploughs on though and complains afterwards.

[jackhammer in reply to diandgord]

Many thanks and good positive news. Hope the rehab work goes well!

Best regards,

Jack.

[kady1270]

I think everyone has a different reaction to Ibrutinib. My husband was on it for about 10 months. He had quite a bit of muscle/joint pain and had to come off it. The good news is that was almost 10months ago, he just went through a full work up at MD Anderson and it shows he is in complete remission. This was not supposed to happen so we really are not sure what to expect.

[jackhammer in reply to kady1270]

Hi Kady, many thanks for your reply and what remarkable news for your husband!..Long may it continue!

Good luck and best wishes,

Jack

[Bubnojay]

Hi jackhammer

Wondered what you decided and how you are. Hope you don't mind my asking but of course wishing you all the very best.

Bubnjay1

[jackhammer in reply to Bubnojay]

Hi Bubnjay,

No not at all and great to hear from you. I had planned orthopaedic surgery in August which didn't go quite according to plan and the screw which they had put in my toe had come loose and had to be removed. They thought it might have been due to infection so I was a put on a 6 week course of anti biotics and the Flair trial was deferred until all was clear. This was finally signed off 2 days before Xmas, and last Thursday the 14th I was up with the Professor having bone marrow, bloods and ecg.

I should know all results and offer of which element of the trial in about 2 weeks.

Many thanks for your best wishes and likewise all the very best to you.

Jack.

[Hershey]

In selecting patients for the trial groups is the IgVH mutation status considered in determining which arm a patient will enter? It seems like FCR seems to produce more durable remissions with mutated IgVH. A recent paper showed that the unmutated IgVH status results in the CLL cells being more BTK dependent and therefore possibly more responsive to Ibutrinib.

ncbi.nlm.nih.gov/pubmed/267...

[jackhammer in reply to Hershey]

Many thanks Hershey, some very interesting info here. I'm going to run them past the Professor when I am in possession of my full genetic make up.

Best regards,

Jack

[Bubnojay]

Hi Jack

I miss the gym too nothing quite like it for full body and mind fitness. As you had chemo previously I wonder whether this will affect the prof's advice when all bloods are in.

Be good to hear how you get on if it's no trouble.

Best wishes

Bub

[jackhammer in reply to Bubnojay]

Yep no problem Bub, I shall keep you posted by all means!

Best regards,

Jack

[Peggy4]

No words of wisdom for you Jackhammer but wishing you all the very best. Do let us know how you get on. Peggy.

[jackhammer]

Nice one Peggy, will do. And all the best to you as well!

Jacko

[wroxham-gb]

Good luck with your treatment whatever trial arm you are on Jack.

Best wishes

Sue

[jackhammer in reply to wroxham-gb]

Many thanks Sue and best wishes for you and your remission. Long may it continue!

Jacko