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CLL Support Association
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ASH 2012 Ibrutinib Press Conference

Patient Power Video


10 Replies

This is all very well and I haved to engage with the oncologist consultant - however, they do not time for me, they brush me off with platitudes and send me on my way. It is as much as I could manage to get the last one to write down my blood results for me. Even then it was just the hgb, wbc and lymphacytes. No further explanations.


I like the explanation of why docs find it hard.


First you need to be given them to discuss them!! How frustrating, perhaps it’s a good thing it’s not a sprint but a marathon. I have posted below a few links in the thread that outline your rights and methods of getting further information or referral if you are in the UK .

However I had a thought, reading your profile I see you tell us you have been diagnosed with SLL . I remembered an article by professor Hamblin which Chaya reviewed; SLL versus CLL how different are they updates.clltopics.org/1993-...

This explains why SLL tends to end up in the hands of oncologists and CLL in the hands of haematologists. That SLL is a lymphoma and is monitored using the Anne Arbour system and during early stages may not present in the peripheral blood (so the information you struggled to gain may not be of the greatest importance to you). Physical symptoms may be of greater significance in early SLL the Hamblin article helps explain some of this. there can be treatment differences in early SLL.




Thank you for this information Nick. It is very interesting. I read all of the article by Professor Hamblin on the difference between CLL and SLL. The most useful explanation I have heard to date! This confirms that I am stage lll SLL but with no infiltration to the bone marrow or spleen as yet (as per CT scan in July). I do actually see a Haematologist at the N&N University Hospital but when I went on the 29th November I was in with the consultant for about five minutes! I was told - good news, your bloods are better so we don't need to see you again for 6 months. This time I was not examined for enlarged lymph nodes as before (so how do they know?).It is all a bit worrying that so few people understand my condition but I shall continue to get on with life to my best ability whilst monitoring my symptoms. Should I feel it necessary I will call the Macmillan nurses' number which I was given initially, or visit my GP, or visit the Oncologist at 'Starthrowers, in Wymondham who I have discovered. Thuis is a charity for cancer patients and their families and carers. It is a lovely place with great people. I am going tomorrow to do the Yoga class. Thanks again for your help Nick.


Hi I'm excited about this treatment I'm 56 and have had FRC + M (on a trial) finished March 2011 with no sign as yet of the CLL coming back, although I know its just a matter of time. This new breakthrough could be for me a new lease of life. It would mean that I would again be making long term plans for the future which at the moment I do not feel I can do but only make short term plans. Its good news.


Hi jangreen it is an exciting prospect to add to the armoury . Glad to hear your treatment was successful and you have achieved a remission, long may it last.

It is still very early days for Ibrutinib and yes I think it is very exciting as a fellow younger CLLer, the prospect of long term less toxic treatment potentially arriving on the scene in future particularly. I wish you a long remission. It must seem equally exciting for older relapsed patients and those who may be treatment refractory or are running out of options.. I am sure we will all be following the drugs progress over coming years. From what I understand these treatments are a pill for life. Trials are now beginning in the UK for the treatment relapsed and for treatment naive maybe next year. Does anyone have information on the expected duration of a trial? The cost of these treatments has been identified at a shockingly high. As someone else commented in a recent report following talks on the topic by UK clinicians:

“The potential cost of some of the new treatments coming on line was quite

shocking however, raising questions about how the health service will cope with the cost

of some of the newer therapies as their application across a broader range of cancers may

expand...a brave new world of cancer treatment options in a society where 1 in 3 of us

can expect a cancer diagnosis in our lifetime may demand a brave new health economy, and

that isn't going to be easy to fund in the current climate... “


Access audio: leukaemialymphomaresearch.o...

The number of new trials in recruitment and set up is growing fast. The novel BCR inhibitors are on trial and open for recruiting with several in set up for this year and next . There are many others and a consultant’s knowledge is going to become even more important when adding these options to treatment possibilities to aid in negotiating the terrain and selecting with you the best available option to treat your CLL. Professor Fegan is talking to us on topic at the January CLLSA meeting in Cardiff. As a leading clinical researcher and trials expert he is preparing a talk for us on “The New CLL clinical Trials” cllsupport.healthunlocked.c...

Here are a few links so that you can view UK trials.

UK - NCRI CLL trials portfolio map.


UK Clinical Trials Gateway - UKCTG


UK - This summer’s trial review written for the CLLSA identified a few in set up and planning including the CLL10, Phase II/III trial (Ibrutinib + R vs FCR) in planning to open in 2013




Oncologist are sometimes poorly versed in CLL and rarely up to date. You should get haematologist in a large city hospital...they see more CLL ...which actually is quite a rare cancer.




You are entitled to copies of your results and files. This is a UK information post that may be of interest. I am sure others will be able to provide some feedback about what may have helped them.

NHS information support. The support our care teams provide does seem to vary, if you require information or advice you can work with PALS.

NHS Choices, your health, your choices: nhs.uk/Pages/HomePage.aspx

What is PALS (Patient Advice and Liaison Service)? nhs.uk/chq/pages/1082.aspx?...

“How PALS can help” and “How do I contact my nearest PALS”, with many links to different aspects of the service.

How do I get a referral to an NHS specialist? nhs.uk/chq/pages/1094.aspx?...

How do I get a second opinion? nhs.uk/chq/pages/910.aspx?c...

How do I access my medical records (health records)? nhs.uk/chq/pages/1309.aspx?...

Some of the UK consultant Haematologists with a special interest in CLL



"The findings of two studies into the drug were discussed at a press briefing Saturday during the 54th Annual Meeting of the American Society of Hematology at the Georgia World Congress Center in Atlanta".

Annual Meeting of the American Society of Hematology:



Hi Hairbear, Yes at the moment the costs are out of this world but like AIDS drugs they will come done in price but only from pressure from groups like ourselves as with AIDS drugs. Although its a commercial venture to R & R drugs there is no point in drugs companies having stocks of drugs on their shelves when no one but the very rich can afford to purchase them. The NHS has historical been very bad at getting the best price for drugs but now they have not got the money to be anything but price conscience like the rest of us.Even NICE has had to bow to pressure. There needs to be a rethink about the whole idea of cost of treatment under the NHS. This of course needs political will and some hard questions answered. Such as you need to have paid in before you can get NHS treatment, making patients pay for some costs like hospital stays or hospital food, a low cost to see your Dr/Hospital and so on. None are appealing but necessary. We at least should start to talk about it.


Cost is only one issue ...the approval process for these new small molecules, needs to be changed. Standard clinical trial end points like overall survival, complete responses and progression free survival, used for chemo therapies, do not apply well to these new treatment.

This may be more like insulin for diabetics than fludarabine for CLL. Add to this engineered T cells and the research playing field is moving much faster than the regulatory approval bodies. How fast they can change remains to be seen.


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