Surveillance on PCYC-116-CA (Extension study RESONATE-2) MRD +ve

[Mikey47]

Happy New Year to all.

I haven't been here for quite a while but I have dropped in occasionally to try to keep up.

After my third bone marrow biopsy at the end of November and a full body scan and normal blood counts for over 2 years I have now been declared to be CR, (No Measurable Disease) MRD +ve.

I still have around 18 months to go on Ibrutinib to complete my five years on the study.

I sincerely hope that many others here are having similar positive outcomes.

Best Wishes to all,

Mike

[wroxham-gb]

Really good news Mike. Love the photo.

Best wishes.

Sue

[Mikey47 in reply to wroxham-gb]

Thanks Sue,

Best wishes to you too.

[Newdawn Administrator]

Hi Mike,

What absolutely fabulous news and good to hear from one of the 'old' crew! Strangely enough you came to mind this week when I was thinking back to the early days on the other site and just how far treatments options have advanced, particularly for those with the 17p and 11q profile.

I'm so pleased to hear your incredibly positive news and hope you go from strength to strength.

I'm still pre-treated but unlikely to dodge the chemical cocktail bar indefinitely. Just not sure what 'flavour' it will be yet.

Sending best wishes,

Newdawn

[Mikey47 in reply to Newdawn]

Hi Newdawn,

Good to hear from you

Dare I say from one oldtimer to another? Yes, I well remember that my only option before I asked for a referral and second opinion, was FCR, according to my 'home' hospital.

I'm 11q- so I'm delighted to be MRD +ve 7 years down the line.

I fondly remember our crew at Leukaemia Care. Are any others still here. We used to have fun there. I look in on MacMillans occasionally but it seems quiet there.

Are you still on watch and wait? I wish you well and from what I remember you're a real asset to this forum and I hope you continue to be.

Best wishes

Mike

[Newdawn Administrator in reply to Newdawn]

Yes still on the W&W and hoping to be for as long as I can cling on kicking and screaming!

Yes Macmillans site seems pretty quiet these days and I sometimes look in on the Maggie's site where my journey started.

Some of the early crowd post here but with different names so I can never be sure. I remember the fun we used to have discussing music back then and Sparkler's wacky drawings of her wild hair!

The CLL 'landscape' has changed and improved so much in those years and I'm so glad you've been able to benefit from that with spectacular results.

Thanks for your kind words,

Warm best wishes,

Newdawn

[Peggy4]

Such fabulous news. Couldn't be more pleased for you.

Peggy

[Mikey47 in reply to Peggy4]

Thanks Peggy,

Best wishes to you

[MelioraDay]

Really great news!! So happy for you!!

[Mikey47 in reply to MelioraDay]

Thank you

Best wishes to you Mel

[UK-Sparky]

Great news and great photo Mike. Keep us posted.

Marc

[Mikey47 in reply to UK-Sparky]

Thanks Marc

Best wishes to you

[Bubnojay]

Thanks for posting Mike

It really lifts my spirits when folk like you take the time to post about their good news. I'm sure many of our newly diagnosed community are heartened to see good results at a time when they are scared witless being told they have a cancer.

Your right about Newdawn, this site would be the poorer without her. One of our valuable assets though that does not really say how much she means to us.

As Spock says, live long and prosper.🖖🏼

Bubnjay1

[Mikey47 in reply to Bubnojay]

Hi Bub,

Good to hear from you

I know that you play your part here too Yes, perhaps 'asset' was not the right word. You've reminded me what a great family we have here. I have been away a long time!! but never forgot you all!!

How is your situation?? I hope you are doing well.

Best wishes,

Mike

[Bubnojay in reply to Mikey47]

Just passed my 6 year cancerversary, and the ovarian cancer is still asleep, long may it remain so.

Lots of lovely folk have joined us, in such a troubled 😟 world this community reminds me there are still plenty of good people around.

Wish only the best for you too.

Bub

[gloria46]

Mike, Very glad to hear you are doing so well

[Mikey47 in reply to gloria46]

Thanks Gloria

Best wishes to you

[Kwenda]

Thanks for posting Mike, its always good to get some good news, especially when it is the results of a trial that has such an excellent outcome.

( The more that we get positive news about new drug trials the better, as it gives much hope to the newly diagnosed )

And yes ‘ NewDawn ‘. the CLL scene has changed dramatically and positively over the years that I have been watching from way back to the ‘Grannybarb’ days..

...

Dick

[Mikey47 in reply to Kwenda]

Hi Dick,

Wow, Grannybarb, she was one of the first to welcome me to the LC site in 2010!

I've seen some of your helpful contributions over at MacMillans. You're doing well if you're still pre-treatment!!

Yes, the study I'm on and will be on for another 18 months or so has rendered my 11q- prognosis redundant.

Best wishes to you

Mike

[sparkler]

Hiya Mikey!

Great to hear from you and very good to know you've been doing so well on the trial.

This Old-Timer's still here; still on W&W, enjoying music (fond, funny memories from the 'good old days') and still doing whacky drawings 🙃

Happy New Year - each one seems to fly by much faster than the last! Enjoy your NMD status and take good care of yourself.

Be well 😀

sparkler x

[Mikey47 in reply to sparkler]

Hi Sparky

Wow!!, it's been a loooong time!! and you still on W&W!! Thanks for your comments, it's good to hear from you

Yes, where would we be without music? I'm always out on my bike with my mp3 player and head phones glued to my ears!!!!

I think those music days at LC have gone down in history!! They were fun!!

I hope your other ailments are improved and you're keeping well. Happy New Year to you too and take good care yourself.

Best wishes

Mike

[sparkler in reply to Mikey47]

Yes Mike, I'm into my 7th year on W&W now and I count myself very lucky on that front. I've still managed to gather a few extra health problems - AFib and a lack of my own Cortisol production, though happily both are under control with meds... soooo many daily meds but can't complain (well I could but I won't) 😂

Your news of CR has put a big smile on my face today (tickled pink by it) and I love to think of you still cycling along the seafront, complete with your headphones. Long live the music; last year was tough wasn't it, when we lost so many Legends?

Keep on taking the tablets and keep those pedals going round!

Yeah yeah yeah

sparkler x

[srdh50]

Great news!

[Mikey47]

Hi srdh50, thanks

Best wishes

[newyork8]

Grear news! Can you please explain your treatment protocol and what "ve" means? Thank you.

[Mikey47 in reply to newyork8]

Hi newyork8

My treatment protocol, (mmmhh...that 22 page document!!!) has changed over the years and we are now on an extension study and means I only see my consultant at Bournemouth every 6 months when I have blood drawn, questionnaires regarding my general health condition and a physical examination. Also get my drugs, of course. I take 3 x Ibrutinib capsules daily 420mg.

I have 6 monthly scans (MRI) but I can only collect 2 x 28 day cycles of drugs at one time. So in between my consultant appointments I have to make 2 trips only to collect drugs and have blood taken. I do get my fares paid.

The 've' isn't really necessary but it seems to be the way in the 'trade'. MRD +ve just means Minimal Residual Disease positive.

Hope that explains all, best wishes,

Mike

[newyork8 in reply to Mikey47]

Thanks for the reply Mike! So the treatment was Ibrutinib by itself. I understand the results look good for 11q del as well (which I am).

[Mikey47 in reply to newyork8]

Yes, I was diagnosed in 2010 and with the 11q- and a 'poor' prognosis. In 13 I needed treatment and my home hospital was only going to put me into FCR. I asked for a second opinion and a referral to Bournemouth hospital where I found that I qualified for this study:

PCYC-1115-CA Randomised, Phase 3 study of Ibrutinib/Imbruvica versus Chlorambucil in Patients 65 yrs + and untreated with CLL/SLL

I was fortunate to be randomised to the Ibrutinib arm but there was 'crossover' in the event of patients not faring well on Chlorambucil.

Within a short time my raised lymph nodes disappeared but because of the extensive lymphadenopathy in abdomen, chest and on spine, it was a year before my blood counts returned to normal and longer before my lymph cleared.

So next month sees my 7 year cancerversary with 11q- .

All the best,

Mike

[Justasheet1 in reply to Mikey47]

You're my 11q hero. You're laying the ground work for me and many others here.

Jeff

[Mikey47 in reply to Justasheet1]

Thanks Jeff,

Onwards and upwards!!

[ikahan in reply to Mikey47]

I was wondering, MRD+ve means that there is still minimal residual desease. Is it in the blood or in the bone marrow or in both ? Also does your trial doctor expect that eventually you will become MRD--ve ? Thanks, Ileana

[Mikey47 in reply to ikahan]

Hi Ileana

MRD +ve is what it says, meaning the treatment has achieved the MRD. My report says No Measurable Disease.

I should add that I have another 19 or so months of Ibrutinib to complete my 5 years on the study and may be tested again. I will have 3 more scans during that time and maybe another biopsy.

I hope this is helpful.

Best wishes

[Cllcanada Top Poster CURE Hero in reply to Mikey47]

I find this term confusing... I wish it wasn't so ambiguous... ☹️

The guidelies state section 5.9

Either 4-color flow cytometry (MRD flow) or allele-specific oligonucleotide PCR is reliably sensitive down to a level of approximately one CLL cell in 10 000 leukocytes. As such, patients will be defined as having a clinical remission in the absence of MRD when they have blood or marrow with less than one CLL cell per 10 000 leukocytes.

bloodjournal.org/content/bl...

Here is a Roche doc on this...

roche.com/dam/jcr:3205c548-...

~chris

[Mikey47 in reply to Cllcanada]

Hi Chris, yes it is ambiguous. I'm wrong about the MRD -ve . My bone marrow report shows cellularity, megakaryocytes, M:E ratio 1.4: 1 (normal) etc.. concluding:

"Flow confirms MRD +ve CLL" which I'm assuming is less than one cell per 10000 leukocytes. My full body scan concludes "No measurable disease". So it is possible with another 19 months of treatment I might attain MRD -ve???

I hope you are well, best wishes

Mike

[Mikey47 in reply to ikahan]

I'm corrected Ileana. I think, with another 19 months of Ibrutinib on the study, MRD -ve may be possible.

Best wishes

[ikahan in reply to Mikey47]

Thank you Mikey, I really hope you do become MRD--ve.

[Mikey47 in reply to ikahan]

Thanks Ileana, I only see my consultant every 6 months now so haven't spoken to her about the reports which were e-mailed to me by my research nurse.

How is your husband?

Best wishes

[ikahan in reply to Mikey47]

My husband just started an ibrutinib trial for early high risk ( unmutated, Notch 1 + ) that otherwise would be still in w/w. He's just finished one month of ibrutinib with minimal side effects except some stomach issues and a bad sinus chest infection

[Mikey47 in reply to ikahan]

The side effects for me were minimal and in the early days and passed. However, I have had an eye problem which I cannot put down to the Ibrutinib and also skin problems which seem to be common on Ibrutinib.

I hope the trial goes well for your husband, and he does well on Ibrutinib and has a good outcome.

Good luck

[ikahan in reply to Mikey47]

Thank you Mickey, all the best to you with your trial

[pkpayne]

What a great picture to go along with your wonderful news! Thanks for sharing both.

Paula

[Mikey47]

Thanks Paula,

Best wishes to you

[ClemMends]

Great to hear things are progressing and thanks to you and all the other 'founders' for the updates and progress reports. As a relative newbie here (Sept 16), the CLL environment sees to have some pretty encouraging options now which I guess was the less the case 7 years or so ago. Hope all remains +ve for you.

Chris

[Mikey47 in reply to ClemMends]

Thanks Chris,

... but it's not all good news. The residual disease is the cells that have gained some resistance to Ibrutinib and will eventually lead to, I believe, a relapse. MRD+ is the main cause of relapses.

However, there are so many new drugs following on behind Ibrutinib that I'm sure that I will move on to one of them.

Meanwhile, I'm still on the study until either it finishes or I relapse.

Best wishes

Mike

[shoshanaz]

Wonderful news and a funny picture. Smiles all around. Thank you for sharing your progress report!

[Mikey47 in reply to shoshanaz]

Thanks Shoshanaz,

... but it's not all good news. The residual disease is the cells that have gained some resistance to Ibrutinib and will eventually lead to, I believe, a relapse. MRD+ is the main cause of relapses.

However, there are so many new drugs following on behind Ibrutinib that I'm sure that I will move on to one of them.

Meanwhile, I'm still on the study until either it finishes or I relapse.

Best wishes, sorry that this is a cut and paste of my reply above

Mike

[shoshanaz]

I guess we all take the good news as we get it, and still hoping that you are able to experience an extended time relatively unburdened by this disease and able to enjoy life.