11q Deletion - Starting First Treatment Via Trial

[cfgsmith]

Hi everyone. I will be starting my first treatment since having been on on watch and wait. I have signed up for a clinical trial that will offer me either FCR or Imbrutinib. The Arm will be computer selected. I am obviously nervous about FCR and had hoped to avoid chemo. That may not be an option. Having 11q deletion is a concern for me as to how well I will respond and for how long. Is there anyone that has 11q that has been through FCR? If so, can you please share your experience? How did your CLL respond to the treatment? Also, for people with on Imbrutinib with 11q deletion, how are you doing? I'd appreciate hearing your experience too. Thank you all very much.

[Cllcanada Top Poster CURE Hero]

Dr. Terry Hamblin said in 2010, speaking of the CLL8, FCR trial in Germany...

It is important to recognize that the del 11q patients now fall into this intermediate group. CLL8 has removed indecision as to whether they should be intermediate or high risk. If they are getting FCR they are at intermediate risk. (bolding is mine)

mutated-unmuated.blogspot.c...

This was prior to Imbruvica (ibrutinib) approval, but it is still early days for this treatment.

Whatever the treatment you will do fine... just saying... don't discount FCR in 11q.

~chris

[cfgsmith in reply to Cllcanada]

Thank you.

[Cllcanada Top Poster CURE Hero in reply to cfgsmith]

I think the Imbruvica (ibrutinib) arm also includes rituxan/Mabthera... not sure what trial you are entering...

[cfgsmith in reply to Cllcanada]

Yes. I believe so.

[msuteg]

I am currently half-way through a 6-month FCR regime. Although I am not 11q deleted, I have heard that FCR is a good choice for those who are. I like the fact that these drugs have been used successfully for so long. I am doing very well, and hope for the best possible outcome. I'm female, 67 years old, 13q, mutated, with no other health issues other than cholesterol. Best of luck with whatever the computer chooses for you! I had considered that trial, but when I was advised FCR was best for me I went with it instead.

[Agiledog]

Hello, cfgsmith,

Best wishes to you. I am a 70 y.o. guy, 11q, and had FCR which began January, 2012 and had an immediate response. My WBC decreased the first week from 95 to 7. I completed 6 total monthly FCR's, ending June, 2012 and have continued with that remission. Before beginning we travelled to a CLL specialty center at a university cancer institute and we assured that this was the correct path. My wife and I went immediately to dinner and had a bottle of wine to celebrate that we had both a treating and consulting specialist agree on a treatment. Now that ibrutinib and idelelasib have been improved, trials hold much more promise in that now the arms under study are not merely placebo or the active investigative compound, but the conventional treatment vs the proposed better drug. So, take heart. You seem to be in a much better position than many who have gone before. As you describe it, it seems you will get either FCR( which remains the gold standard for 11q folks), or the "new and improved" treatment(ibrutinib). I also expect that given what we now know about the benefits of ibrutinib, if you are in the FCR cohort, you may well get crossed over to ibrutinib sometime during the trial. I thank you for your courage and pioneering effort on behalf of those of us who follow. You are truly a good neighbor.

Keep calm and carry on.

Bud

agiledog2

[cfgsmith in reply to Agiledog]

I am just reading the replies. Sorry for the delay. So far thingd are going well. Thanks.

[ruthyk]

I have just started on ibrutinib & although my WBC's are going up, which can be normal when first starting Ibrutinib, I have noticed any side effects. I have now taken the the drug for 6 weeks. I am interested in any side effects other CLL patients have noted taking Ibrutinib. What effect dose alcohol have while taking Ibrutinib. My daughter will be getting married soon & I would like to have wine at the wedding.

[Cllcanada Top Poster CURE Hero in reply to ruthyk]

Ruth.. check with your doctor... we are all different, and what might be fine for some, may not be the best for others...

Wine or not... the wedding will be wonderful!

~chris

[andrew1 in reply to ruthyk]

I love your question. I have 11q del and have been on Ibrutinib for 8 months. I have fully tested the effects of combining Macallans and Ibrutinib and am pleased to report that from my experience they seem to have a synergistic effect. Have a great time at your daughters wedding.

[Jm954 Administrator]

Hiya, I'm 11q deleted and, thanks to a trial, have been on Ibrutinib for 13 month with an excellent response. It's not without side effects but I'm happy to put up with them (intermittent arthralgia and low grade diarrhoea). Energy levels are fine now and I'm running about 25K each week

Recent data shows Ibrutinib is very good for 11q deleted patients and the majority do well. Whatever treatment you have, go with the flow and look after yourself.

[Jm954 Administrator]

Hiya, have you started any treatment yet? Are you OK?

[newyork8]

Ibrutinib for 11q like me performs as well if not better than for other less risky mutations. I preferred the non chemo route as I am unmutated.

[Hidden]

11q. 8 months on ibrutinib. Blood pressure is high (on 2 medications for BP). New onset heart palpitations requiring ER visit. No answers yet regarding heart

No ibrutinib for next 7 days.

Worried

[Jm954 Administrator in reply to Hidden]

Sorry to hear that Hidden . My hypertension on Ibrutinib was very labile but has been fine and stable on Losartan. Were the heart palpitation due to the hypertension?

My cardiologist was happy with everything and I didn’t stop my Ibrutinib.

I hope all resolves soon and you can continue with your treatment. With best wishes

[Hidden in reply to Jm954]

thank you. I am hoping too. No answers yet - what is wrong ( if anything) with palpitations. Oncologist thinks it is Premature ventricular contractions...nothing abnormal on ECG. But the sensation was very distressing and warranted ER visit...in the meantime medication update for BP is needed to add beta-blockers to two other meds for BP...

he is taking 2.5 ACE inhibitor and 5 mg calcium channel blocker. In fact the later could cause palpitations...he needs a good Dr...to manage BP

just a though....he was taking ibrutinib with 5mg amlodipine together in the evening...maybe it is not such a good idea to take it together since ibrutinib reaches max concentration hours after he takes it...in the middle of the night

ANY IDEAS how and when take the meds during the day are welcome

[Jm954 Administrator in reply to Hidden]

I can only tell you that I do take my Ibrutinib and Losartan both together first thing in the morning.

I found the amlopidine did not control my BP throughout the day and with my Dr's approval I added 2.5mg in the evening but my ankles swelled up (they were the only good bit of me!) then my legs - no good at all. Changed to Losartan and everything is so much better.

[Hidden in reply to Jm954]

thank you. actually ibrutinib label says can interact with calcium channel blockers. i wonder if amlodipine should never be used with ibrutinib since amlodipine is a calcium channel blocker. we are on the mission to find a cardiologist today

[ABloor]

Hi,

How long were you on W&W before you needed treatment?

I am also 11Q deletion.

Anne-Marie

[Hidden in reply to ABloor]

no ww. dx after over 10 years of vague symtoms

[kathymac52 in reply to ABloor]

My husband only had 2 years on W&W as he is 11Q deletion.