Feedback on my new treatment options,... - CLL Support Assoc...

CLL Support Association
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Feedback on my new treatment options, what to do?

Hi everyone. So here goes: in short, after a long period of watch and wait, I have been told I need treatment again. Was always told I would eventually need treatment again, but still a shock, particularly as I feel well. Ran my first ever London marathon this Year! Will be running Great North Run next month.

my brief CLL history:

Dx'd age 39, w and wait, eventual CR , lasted around 5 years, felt well most of this time, kept rnning, kept raising money for charity...not surprising to say blood cancer charity! Altogether living with this 'thing' for nearly 22 years. Oops, just gave away my age.

Above is potted version of a very long story. Have p53 deletion. So now I have 3 options for treatment

1. Clinical trial Phase 3 randomised, Zanubrutinib vs Ibrutinib

2. Rituximab and Venetoclax

3. Rituximab alone

I narrowed it to option 1 or 2. Specialist said all these drugs show great promise, but could not say which is best, partly this is understandable as they are still learning, but it does not help me.

My understanding is the side affects are less severe than the chemo I had all those years ago...here is hoping, the list of side affects looks frightening but I suppose almost any drug has potential side affects.

THE QUESTION BIT ✅

So my question is which should i go for. I know this is a stupid question but it is a difficult decision, and i really have no clue what i should do. I will be discussing it again with specialists on Thursday

but welcome any comments forum people undergoing same or similar treatments, or anyone with knowledge of these

After a long period of relative stable counts, the fact that i am told that i should not delay treatment too long is definitely a shock even if I have been continuously told it was not ' if ' but 'when' I would need treatment.

thanks . I know some of you for sure, i was on one of the first lists, via Acor, a US based CLL list, but generally tried to put CLL out of my mind.

the rambling bit: 🤡

Meantime I will keep running, keep training as long as i can, it has helped me tremendously. and i hope i even have more stamina than i did for my first treatment around 15 years ago. Hoping to do my 2nd marathon in October. Nothing will stop me, excepting physical impossibility or if I lose my marbles (just kidding)

Clearly I can no longer ignore this! CLL, maybe i will have a little pity party, but it will not last long. I remain positive and determined to beat this thing somehow some way ,.. the only thing that scares me is nausea, Is that not funny in a kind of sick way 😀

Another 'sick' joke, I think some colleagues at work think I am using all these recent hospital visits as an excuse to get away from the office. Maybe they are correct!

thanks a lot in advance for any replies.

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You run marathons at the age of (lets see if I can count ... ) 61 - and you need treatment? You work full-time as well!? Are your numbers that high? What caused your physicians to tell you that treatment was near? I suspect it is not fatigue! You don't elaborate on that.

While I am nowhere near needing treatment, I would agree that 1 or 2 is the choice for you. If you have any of the numbers or symptoms that would trigger a treatment decision, then I suspect you could do well regardless of treatment. Of course, any of these drugs can cause side effects.

I guess I am confused here. It seems like your CLL is not slowing you down much.

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thanks Jonquiljo, really appreciate your reply. Yes, confusion is key word here. I am seriously ill but not ill, in summary. It is really the numbers that initiated this, lowered Hg and platelets. Been marginally anaemic for last 2 years but it was stable, so now spealist thinks lowered counts is time to take action, and he is a foremost expert so I do not doubt him. I hope all my running will help as you say. Of course the CLL has given me the ultimate motivation, but I do have to run at a slower pace than others. Did the London marathon in 6 hrs 29 min, very proud of that🙂

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Congrats on completing that marathon!

For what it’s worth, very recently my CLL specialist said if I needed treatment now (I don’t) he would do obinutuzumab + venetoclax.

Good luck, keep us posted!

- Bobby

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Congrats on running & finishing the marathon!

With option #2, you have the likely prospect of achieving u-MRD and perhaps a permanent remission with no further drugs after that.

With option #1, you would be looking at ongoing/forever daily medication (or until you can no longer tolerate it, or it ceases to work).

I myself have been on ibrutinib for 2 years. It has done very well by me, and with no real side effects that I am aware of.

Good luck!

kim

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My husband is a CLL marathoner too, awesome to read about another runner. Husband actually delayed his trial start by a month to get a marathon he was looking forward to in April before starting I+O+V trial in May. Trial is going great and he’s still running everyday. Good luck with whatever you choose!

Mindy

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Hi Mldeterm! Meant to reply directly. So excited to learn that you husband is, like me, running marathons! As mentioned, will be doing my second one end October, the Yorkshire marathon, starting from York. Next Sunday will do the Great North Run for 18th year in succession. Your husband may have heard of this, it is the largest (by no of participants) half marathon in the world, starting from Newcastle Upon Tyne and finish on the coast at South Shield. Do pass my best wishes to him and let's stay in touch, Nice for a moment to take my mind off treatment options which are driving me a bit 😜 !

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meant to add that I am also planning to delay start of treatment till I have finished the next marathon, unless the specialist advises strongly against it. But will do the marathon with whatever energy I have. Let's beat blood cancer! !

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My choice In order of preference would be 2, 1, 3.

R+V will more likely get you to -ve MRD with the possibility of stopping the medication.

Z+I will probably achieve similar results but will likely fall short of -ve MRD and ongoing treatment. There will most likely be some side effects regardless of your choice so the potential of a limited treatment time with the R+V should not be underestimated. Good luck and keep up the running - makes me feel tired just thinking about it.

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Hi Davdow,

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I would agree with Chemtrails-USA , you may want to ask your CLL expert doctor why Venetoclax + Rituxan instead of the more promising Venetoclax + Obinutuzumab /Gazyva which was recently approved for first line treatment of CLL

news.abbvie.com/news/press-...

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With your busy schedule you may want to investigate the clinical trial thoroughly, trials often mean many more hospital visits and CT Scans than you would have on approved treatments.

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Len

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Hi Len

It sounds like Davdow had chemo in the distant past so this would be his second line treatment so that maybe why V + O is not available?

Davidow: One question I plan to ask when I face second line treatment is cost aside what is the best treatment available and then go from there. Unfortunately, there often are differences between best available treatments and those actually available under insurance but I believe it is important to understand all options.

Best,

Mark

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So grateful for all the responses! And really nice to hear of other runners with CLL, keep the faith! Really encouraged they are still running after starting the treatment. The consensus seems more towards option 2, but I will ask about the other treatment mentioned, not sure if it is because I have p53 deletion eg not eligible for chemo any more. Anyway, plenty to discuss with my CLL specialist tomorrow. Will keep you posted, thanks again for the helpful and encouraging responses

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