Living with CLL

My husband was on Watch and Wait for 3 years, then developed an enlarged spleen plus multiple enlarged lymph nodes.

Diagnosis- poor prognosis CD38, ZAP70 positive, VH unmutated.

He was put on the Rialto Trial (Ofatumumab/ Bendamustine plus Idelalisib or placebo. and is now half way through treatment.

Has anyone else got experience of this trial or know someone who has ?

He feels really well at the moment, but we just want to know what we can expect in the near future, as we were planning to move house. This move was cancelled as we needed to remain in the area to be eligible for the trial. It is such a puzzling disease and we just don't know how far we can plan ahead. His CLL specialist won't even hazard a guess. At 72, we had imagined living in the country near our children and grandchildren to enjoy our retirement ,but now we are asking ourselves if we should stay where his health progression will be monitored and treated if and when necessary .

8 Replies

  • The pleasure of being near grandchildren will far outweigh the inconvenience of living with CLL. There are drugs to control it now with few side effects. I am the same age and still do all the things I used to do five years after being diagnosed.

  • While I can't share any experience of the trial, I'd suggest that you don't yet throw away you plans of moving closer to your children and grandchildren. Ask your specialist for their thoughts on assessing how stable your husband's health remains after the trial finishes. If his immunity is satisfactory and his CLL remains stable, perhaps you'll be able to make your planned move on the basis that your husband returns every x months for a follow-up.

    Just a thought, assuming you own your current home, would it be possible for you to rent your home out while renting a home where you want to move? I appreciate that may not be possible in the country, but if you can do that, then you aren't making it very difficult to move back to your current residence should your husband need further treatment.


  • Trisha,

    I agree with Neil & Foolish - don't miss the joy of seeing your grandkids more often because of what "might" happen with your husband.

    We live close to our grandkids and see them @ least every week, go to their school activities and take them on holidays!!

    If you have found a good doctor / oncology team then I'm sure if you discuss this with them they will be able to arrange future appointments OR transfer to another Hospital? (currently being on the Trial till @ least 2017 - I have to attend the hospital twice every three months - which in perspective is OK.)

    Whilst not identical I was on a Clinical Trial - 2 years ago and posted monthly during my treatment - put this

    "July-2013-trial-with-b+ r-idelalisib"

    in the "search space above" to see my experience!

    If any problems occur with my health - our family deals with them at the time.

    You don't mention if your doctor thinks you are on Idelasilib or placebo as my experience (See my August Post.) - the signs in my blood test were quite clear.

    Even if not there is the hope that eventually everyone on the Clinical Trial will receive the active tablet.

    If you want to chat further - im here most days.

    Marty - ( Birmingham Uk - 62 - diagnosed 2001.)

  • Trisha

    I totally agree with the previous comments.

    The joy of grandchildren should far outweigh your concerns about CLL.

    What I don't understand is why now you are half way through the trial why your location should be a problem?

    That is,of course, unless you will be hundreds of miles away from your trial centre and travelling would be a problem?

    My own view,for what it's worth, is that I am in charge of my CLL and although it is part of my life it is not the only or most important thing. Having just suffered a late onset neutropenia after chemo I am actually writing this from my hospital bed.

    However, life goes on my granddaughter sneaked in to see me on Sunday(with nurse permission) which was a joy! I am planning to go on holiday as booked on 30th of the month with the family ( presuming I am allowed) and despite being hospitalised my family still want me to act as their secretary etc and work miracles from my iPad.

    Speak to your husbands trial doctors about what you want the treatments including trials should be holistic and patient centred don't give up your dreams because hubby is a member of our club!

    Look at the positive posts above!

    I applaud Marty's attitude towards his trial it's important but shouldn't take over your life!

    I do wish you and your husband well and really do hope you enjoy the time with your grandchildren it is so important.

    Best wishes


  • Thank you so much for all your kind replies. I suddenly don't feel so alone with coping. I think that sometimes it is worse for the 'carer' than the patient and often wish it was me, not my husband who had joined 'the club'.

    We knew that this particular trial was not available for patients in the area we wanted to move to, hence the reason for staying put. However we never thought to ask if the follow up could be done elsewhere or even if we could book into a hotel and attend the clinic as a 'visitor'. Will certainly check at our next visit.

    Being on Watch and Wait for so long made us think that CLL was somehow just a benign disease, so it came as a shock when suddenly there was a flurry of tests,scans, doctors meetings and forms to sign, followed quickly by the start of chemotherapy. No time to think straight.

    Thank goodness for this forum. We're not the only ones going through this after all, and I believe you're all correct in that we should start making our plans and learn to live with what's been thrown at us.

  • Trisha

    That's the Girl!

    Get on with your life and give this condition a kick up the backside!

    I was on w and w for 5 years then after treatment a further 9 hopefully after this last treatment it will double again to 18 lol

    You should certainly discuss the possibility of your move with the medics they would not want to loose a trial member and I am sure they would be happy to continue and you would certainly be happy with your grandchildren nearer a win win for everyone!

    Go for it!


  • I can understand your dilemma. However, if you will still be able to access the specialist care if or when you need it, I think I would move nearer the Grandchildren. They certainly provide their own type of medicine, chicken soup for the soul, works wonders every time! Best wishes. Peggy.

  • Trisha,

    Like you -- I know that my wife worries more about my condition and general health for all the right reasons -- that's why I have the positive attitude of my "glass always being half full."

    I'm sure that your medics will offer you a solution so that your husband can continue his treatment without too much disruption to your future and "family life".

    I hope all goes well keep us informed.

    May your God be with you - Marty

    PS If this is a Gilead Sciences sponsored clinical trial they may offer you "reasonable expenses" -- ---- I have been lucky enough to get a petrol allowance & car parking --- which just eases the worry.)

    If you are moving to near the West Midlands -- there is certainly a good Oncology Dept I can recommend !!

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