Second treatment looming

[plett1234]

I ama 70 year old male living in South Africa and was diagnosed with CLL in January 2013. I had no symptoms that I was aware of and after a particularly nasty fever was sent by my GP for a blood count which revealed the CLL . I was referred to an Oncologist and sent for a Catscan and Bone marrow biopsy which revealed a marrow infiltration of over 80%. The Oncologist decided to commence treatment right away which consisted initially of Rchop for the initial infusions and then FCR which were completed in October of that year. Bone marrow biopsys revealed a complete remission and I continued to lead an active life . In November 2015 a biopsy of the marrow revealed 40% infiltration of the marrow and my Oncologist in consultation with a Haemotologist decided to delay further treatment as my blood were pretty stable. I have now had a further marrow biopsy which has revealed an 80% marrow infiltration. Strangely my blood remains fairly stable at Red Cell 3.76 Haemoglobin 13.3 white cell 6.6 Neutrophils 1.22 Lymphocytes 5,28 and platelets which have always been low at 70.

Where do we go from here. I am told Ibrutinib is exorbitantly expensive and as far as I can gather no trials exist in South Africa. Is further FCR an option or will it damage the bone marrow irreparably? Other than a cold and a chest infection this winter I have no real symptoms. I am fit playing golf 3 times a week and walking the 18 holes. What are my options. Is a trip to the UK to get onto one of the trials an option??

plett1234

[Bubnojay]

Hi plett1234

I'm sure more knowlegeable members of our community will give an opinion when they read your post, but your ALC and other acceptable readings, plus the fact you are feeling fine would indicate to me that you can afford to wait for a while, before making any treatment decisions.

We have one community member who travels to the UK from Australia for treatment , hopefully that answers your trip question.

Best wishes that you continue to feel good for quite some time.

Bubnjay1

[Cammie]

Bub is right your bloods look ok and as you have no symptoms at the moment I would use this time to investigate your options in South Africa and elsewhere should that be necessary.

Have you doctors suggested which treatment they are looking at?

FCR has been used as secondary follow up treatment for those in a category where no comorbidities are troublesome and where successful previous use. I don't know what is available in South Africa so can't really comment.

If you do come to Uk get in touch we can play a round or two!

Best wishes

Geoff

[MsLockYourPosts Passed Volunteer]

Deb, who travels to the UK, I believe, is an English citizen. If you decide to look into traveling for treatment be sure to look into any issues related to citizenship in that country.

[AussieNeil Administrator in reply to MsLockYourPosts]

Yes Deb (thankfully) retained her UK citizenship when she moved to Australia; I believe she has dual nationality.