Avoiding Chemotherapy.: Dr Sharman Blog... - CLL Support

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Avoiding Chemotherapy.

Kwenda profile image
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Dr Sharman Blog.

This very kind and extremely knowledgeable doctor makes regular posts to his blog concerning all matters CLL. His generosity of spirit remind me of the now departed Dr Terry Hamblin, with his obvious caring approach. I would recommend that all sign up to receive his blog posts.

A blog entry, Tuesday September 25th, makes excellent reading and is titled

‘ CLL Treatment – Avoiding Chemotherapy. ‘

His blog is at :- cll-nhl.com/

The link is :- cll-nhl.com/2012/09/cll-tre...

We all know that the origins of CLL are apparently genetic with many alterations including the common ones of 13q del, 11q, 13 Tris and 17P. But what happens after chemotherapy.?

In his blog post Dr Sharman wrote the following very significant entry ‘ After ( chemotherapy ) treatment, tumors contained more than 5x the number of mutations than were present before therapy started.’

The chemotherapy lowers the white cell blood count, but then does other significant damages to our genetic makeup. THIS is one reason why we need, and should push NICE, for the newer drugs such as ibrutinib. While the longer term effects of ibrutinib are not yet known, the damage to our genome is certainly less.

Dick

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Kwenda
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HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

Hi Dick

We are fortunate to have such a dedicated expert prepared to put in the time to keep us informed about the changing landscape, his blog is a great learning resource.. I have posted a link to my earlier reply which is more on topic here. I do find the way Dr Sharman links to further information articles within his passages most helpful .

Dr Sharman's comment about there being 5X more clonal mutations following chemo treatment caught my eye. I believe this related to treatment of brain tumours. Is the same pattern displayed when CLL cells are treated? I recall at The March UK CLL Forum that the findings from the gene sequencing of CLL cells before and after treatment showed a reduction of clonal variety and number of overall clone types following treatment, with a few new types appearing. Were the few new types as a result of the treatment or part of the natural clonal evolution process? cllsupport.healthunlocked.c...

The rapid development of expensive novel treatments for CLL now in trial. Have resulted in CLLSA seeking to establish a new advocacy role. You will have seen this touched on in today's newsletter appealing to those with skills or membership of communities that can assist.;

"We have been discussing how we embrace

a new advocacy and lobbying role to ensure that

the profile of the CLLSA is improved and that the

voice of the CLL community is heard loud and clear,

particularly by the new decision-making groups in

the NHS. We hope to discuss this with you in more

detail in the coming months but if you are active in

lobbying or campaigning at the moment or you wish

to volunteer to become more actively involved in

this work please email me at:

arthur.graley@cllsupport.org.uk"

Nick

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Dr. Sharman, just today (May 3rd) guesstimates the cost of ibrutinib will be $150,000 US per year.

cll-nhl.com/2013/05/how-exp...

According to a recent paper... in Blood...

'In many countries, an additional year lived is judged to be “worth” about $50-100,000. In England, the National Institute for Health and Clinical Excellence (NICE) values a year lived at about 30,000 British pounds, or about $50,000.'

bloodjournal.hematologylibr...

So, a year of your life in the UK is worth $50,000 and ibrutinib could cost $150,000 ....this does not compute!!

Something will have to change... I suspect ibrutinib will be used only for 17p and perhaps

added in low dose to FCRi and BRi, and them maybe only for bulky nodal disease.

I certainly wouldn't be waiting for it to be available in the UK, Canada, Australia etc. as

a mono therapy...tiny markets...huge costs...

~chris

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