WHAT NEXT?

[DJANGO]

Hello Friends

I am an 80 year old male based in the UK ,about to require treatment having suffered a relapse following B+R treatment 5 years ago.I am unsure what options are available to me and would welcome any guidance.I am caring for my wife who has early stage dementia and my continued good health is vital for her.I am in very good shape with all the good markers , no B symptoms and my disease is highly sensitive to chemo in a positive way I am being treated within the NHS at a center of excellence and have medical insurance cover giving me the facility to be treated privately if this would be beneficial. I am very happy with my treatment to date but have detected a wiff of ageism in the resposes to my queries on treatment, which is understandable ,but I hpoe to overcome this.Any advice would be very welcome

Best Wishes To You All

DJANGO

[Cammie]

Ageismn!!

I hope you are wrong as you are only 10 years above the average diagnosis age and you are a carer for your wife! I would be fuming if you were discriminated against due to age!

Anyway rant over there are numerous new treatments which your med team should discuss with you which do not entail chemo.

However, you say you have no symptoms so I'm a bit at a loss to understand why you should be considering treatment at this time?

[DJANGO in reply to Cammie]

Cammie

Thanks for your reply. My Lymphs have doubled in 6 months although the actual figure is low and all my other blood counts are moving out of the normal range. My consultant, who is an authority on cll has advised me that "the disease is on the move" and treatment will be necessary at some stage-possibly early next year.

[bronx77]

Hi Dj sorry to hear about your your woes you don't say what part of the U.K. You are in but the NHS is the best place to get treatment you could ask your consultant about trials for older patients also ask what your prognostic score is( ipss) that determines how well you will tolerate the various treatments now available

Have a look at the web site of the Christie in Manchester they are one of the U.K. Leaders in the treatment of CLL

You could try and get some help with the care needs of your wife as you will need to think about how you will cope during treatment your Heamotolgy team at a centre of excellence should have a counsellor who can help with this

Good luck going forward and stay positive and keep us all informed

[DJANGO in reply to bronx77]

bronx77

Thanks for kind reply.Unfortunately I am not a candidate for trials because of a colon cancer diagnosis last year.This has now been dealt with .I will follow up the other points you made.

Best Wishes

DJANGO

[Justasheet1 in reply to DJANGO]

DJANGO,

Reach out to CllCanada. I believe he has had similar misfortunes and certainly knows what's around the corner resource wise.

Jeff

[Cllcanada Top Poster CURE Hero in reply to DJANGO]

Hi Django...

I'm in a somewhat similar CLL boat in Canada, CLL and colon cancer, but I had the pleasure of a Richter's transformation, which excludes from all clinical trials... I also failed one of the new drugs, Imbruvica (ibrutinib) due to bleeding complications and A.fib. 😷

Since you are under the care of a CLL specialist, you should follow their directives. I would discuss Imbruvica (ibrutinib) for sure, most people do very well on it. Not sure about funding in the U.K., but there is the Cancer Fund and there are compassionate access programmes through Janssen the drug supplier...

Other than that, perhaps the new Rituxan type drug called Gazyva... which includes an old chemotherapy combination with chlorambucil in most protocols outside the U.S. or Rituxan as a monotherapy.

There is also Idelalisib (Zydelig) and rituxan, not certain it is funded in the U.K., but I think it might be in Scotland. There have been a few patients here on it, but my specialist says not likely since there can be colon problems with it.

But for many new treatments you may need to go private, and for those vagaries...you need expert guidance...

I'm at a crossroads frankly at age 70, do I risk chemoimmunotherapy, although I'm rituxan refractory and the chances of Richter's Revenge looms large, which would be untreatable, or go back on a lower dose of Imbruvica (ibrutinib) hoping not to bleed... 🤔

So... for me it will be an interest fall...

Wishing you the best from a heatwave in Canada... ♨️🇨🇦

~chris

[Peggy4 in reply to Cllcanada]

Wishing you all the best Chris. As always, amazed at your willingness to help other whilst going through so much yourself.

Peggy

[wroxham-gb in reply to Peggy4]

Me to.

Sue

[DJANGO in reply to Cllcanada]

Hi Chris

Thanks for your kind response.My apologies for the delay in replying but I have been tied up with another illness in the family.In response to your suggestions, my understanding is that idelalisib has only been approved in the UK for patients who relapse within 2 years of treatment, a criteria I dont meet.Ibrutinib has not yet been approved. My options appear to be narrowing down to Chl.+Obinutuz. which, I believe has a median PFS of 2 years .I will however continue digging.So sorry to hear about you problems. As we know there are huge variations in responses to chemo.I had B+R at age 75 and it was hugely effective.Although I had only 2 sessions out of 6 because of adverse reactions it gave me another 5 years before further treatment will be necessary.My best wishes for your journey ahead

Bob

[Cllcanada Top Poster CURE Hero in reply to DJANGO]

Just wanted to mention that VENCLEXTA (Venetoclax ABT-199) is available in the UK on an early access probgramme, as of last week, no details but it might be another option for you...

healthunlocked.com/cllsuppo...

[bronx77]

Hi really sorry to hear about the colon cancer best wishes going forward kevin

[Peggy4]

I can understand your concern Django. I am many years younger than you but would find it appalling if age was a factor in treatment. Surely it should be overall health. Especially when I understand that the median age for diagnosis is 72! Keep pushing,

Peggy