My journey on FLAIR (Ibrutinib & Rituximab)

[Naboo]

My journey (so far…)

I am a 65 year old man living in the UK and currently on the FLAIR trial (Rituximab / Ibrutinib).

Two years ago, my then partner, who was a homeopath suggested that I had my lymph nodes checked as they had been swollen for some time. I thank her for that.

After numerous procedures including CT Scan, Bloods, Ultrasound, fine needle aspiration etc I was diagnosed with SLL stage 3A / CLL Binet stage B. Enlarged lymph nodes and spleen but essentially asymptomatic. I may have been like it for some time, possibly years.

I was then put on watch and wait which I did not find too depressing. Probably because I considered that I was lucky to have this instead of the Lung Cancer which took my wife in 2011.

At the end of March 2017 my WBC and Lymphocyte counts were rising quite quickly and I was offered a place on the FLAIR trial.

I was lucky and started on 24th April with a Rituximab IV infusion plus Ibrutinib tablets and a cocktail of supporting medication. (Aciclovir, Alloprinal and Co-Trimaxozole)

On the 9th May I went to the CCLSA conference in Liverpool and started to feel the effects of the CLL and or medication. Occasional difficulty getting up and down the stairs quickly etc.

The main side effect I have had, possibly from Rituximab or Ibrutinib has been joint pain which occurs in various parts of the body for a day or two and then disappears. Worst was a lost night’s sleep to a wrist that would not stop sending the pain in spite of Ibuprofen which is my last resort medication. I think I am full of enough drugs already

At the end of May I ran the London 10K and completed the course in 65 minutes. This is quite slow for me but the warning signs were in the training as I could never manage to keep running for long.

However, the treatment proceeded and by the July things were better. I completed the Wimbledon 10K in 59 minutes which puts me back to normal fitness.

My Rituximab infusions are complete and I am now on Ibrutinib for the foreseeable future.

I feel blessed to have a restored quality of life and intend to make the most of it.

I feel in some ways that CLL has been the reminder and that I may achieve more because of it.

Let us wait and see.

[Jacksc06]

Hi, your story is not unlike my own. You seem to be coping very well. Wishing you well for the future.

[PaulaS Volunteer]

Thanks for sharing your story, Naboo. Great to hear how you've done so well and are making the very best of your restored quality of life. I love the way you say "CLL has been the reminder and I may achieve more because of it."

It's good to hear from folk like you (who we don't hear from so often because they're doing so well)!

Wishing you all the best

Paula (in Sheffield)

P.S. I love the cat!

[Naboo in reply to PaulaS]

Thanks Paula. I have been following posts for some time and have found it all very helpful.

On first sight a newbie might think it is all a nightmare.

But it isn't necessarily the case. Hopefully with the right information and support we can make good decisions and concentrate on living our lives.

I keep my CLL in a box in the back of my mind and negotiate with it if and when the need arises.

I have been lucky, but I think that the newer treatments are offering hope to more and more in our situation.

All the best

Naboo.

[Shooey]

What an uplifting read first thing on a grey autumn UK day, thank you!

I will hopefully complete my first cycle of obinutuzumab/chlorambicil this week provided the GCSF injections have sorted out my neutrophil count. I can't claim to have your levels of energy yet but enjoy a dog walk and an hour in the gym when the mood takes me.

Does anyone on this combo find that they now have a ferocious appetite, I can't stop eating! Is my brain telling me to do this to make up for days when I probably won't feel like eating much or is it a normal response. A few extra pounds won't hurt me but I don't want it to get out of hand!

Good luck Naboo, keep running

Shooey

[MsLockYourPosts Passed Volunteer in reply to Shooey]

Shooey - I'm not where you re in the first cycle. If you just have done day 1/2 recently it could be the steroids that are causing your appetite. I got Gazyva without chlorambucil, so can't address that part of it, but found the Gazyva to be a very easy treatment. Just stay well hydrated!

[Shooey in reply to MsLockYourPosts]

Thanks for your reply pkenn and for your advice to keep well hydrated. Glad to hear that you've tolerated Gazyva well, have to say after a couple of reactions on day one it hasn't been too bad! Hopefully the GCSF jabs have done their job and I can complete cycle one tomorrow.

All the best

Shooey

[BJollie]

Naboo, LOVE this story & LOVE that you’re keeping up with your running...don’t stop!! I just completed a Half Ironman triathlon Saturday in North Carolina. I’m 45 yo M SLL on Imbruvica since Aug 2016 (dx 2011, B+R 2012). Unfortunately, most folks don’t understand that exercise helps our cll/sll meds work better, as well as reducing side effects, so keep sharing your story! BTW...great time on your last 10k!

Jollie

[Naboo in reply to BJollie]

Yes, I agree that exercise helps.

Strangely I had a 3 month break until 2 days ago and ran my fastest 5k (3 miles) in ages.

Stay strong.

[BJollie in reply to Naboo]

Outstanding!