Treatment ”options”

[LurkerEmma]

Hello all you wonderful people!

I'm looking for hope and positive energy here...

My dad was diagnosed with CLL just in December. He lives in Barcelona, Spain (edited as advised, thanks Bubnjay1)

He was being treated as a private patient through his full comprehensive health insurance policy

Very short period of watch and wait and then told by the consultant it was necessary to start treatment as his leukocytes keep going up and he is very aneamic. Doctor advised Ibrutinib... Insurance company will not cover it as it is a treatment not a cure. Private consultant will not change treatment plan as he is (correctly) focused on best treatment not financially motivated options.

He was advised to move to the health service for further treatment. They have recommended treatment starts asap with Obinutzumab and chlorambucil. Ibrutinib isn't used as a first treatment option. Just given if other treatments fail or there is a relapse.

He has been getting regular blood transfusions and these seem to help the tiredness.

All advice welcome.

Confusing conflicting emotional times...

[AussieNeil Administrator]

Hi Emma,

With the possible exception of FCR for some with the right genetics and bone marrow transplants for younger patients, there is no cure for CLL. Your Dad's insurance would have been concerned at the indefinite time your Dad would be on Ibrutinib. Some achieve undetectable levels of CLL cells after five years on Ibrutinib.

Obinutzumab/Gazyva has the advantage of being a fixed duration treatment. Many countries with universal health systems haven't approved it, so your Dad is fortunate to have it available. It may not be as attractive as Ibrutinib, but does have the advantage of your Dad not having to worry about side effects after 6 months.

We have quite a few members who have had Obinutzumab/Gazyva treatment, with or without Chlorambucil. See what you find via Search.

Neil

[Susiecarer]

Hi Emma, my husband was diagnosed in January 2017. Before treatment he too had numerous blood transfusions. In January 2018 he underwent chemo of both Obintuzumab and Chlorambucil and had very good results, no sickness, no hair loss, although one session had to be moved due to neutropenia. In November 2018 he was officially in Clinical Remission.

Hope this helps. I am pretty sure that on this wonderful site there will be others who will be able to share their success stories.

Take care

Susie

[MsLockYourPosts Passed Volunteer]

Emma - I had Gazyva alone in 2015, and have been in remission since then. The treatment itself was uneventful. Is Ibrutinib used as second line treatment in Spain? There have been posts from people on some forums about doctors giving Gazyva with the intention of it counting as first line treatment so that they can then use Ibrutinib. Hopefully your father will do as well as I have and won't need to consider other options. How very frustrating that his insurance company will only pay for a drug that cures a currently incurable, but treatable, disease.