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Dr Kantarjian interview

This is a really interesting interview with Hagop Kantarjian of MDACC, Houston where he talks about the current therapies for CML. He has an interesting view on 2nd generation TKI in front line treatment and how that can be managed in the future given the increase in prevalence (patients living with cml) which will impact on the healthcare costs. He also has good things to say about patients with T315i mutation treated with ponatinib. 

This is a must watch interview. Unfortunatel ecancer TV no longer provide an 'embed' code for individual video interviews... but there are lots of good interviews on there so you can pick and mix as you like.

Best,

Sandy

http://www.ecancermedicalscience.com/tv/video-by-category.asp?play=1045&cid=1&scid=12&q=

 

One of the most positive interviews I've seen. A "must see" for all CMLers and families.  It's set me up for the weekend so thanks for this one, Sandy

Best wishes,

Chrissie

Sandy, Thanks for the link in your posting. What an optimistic interview. As one listens, one becomes even more baffled at NICE's approach on the second generation TKI's!!

Great news to, re the intitial feedback on Ponatinib and T315i mutation

Regards

Andy .

I agree Andy - costs of second generation TKIs as first line in the future may well be an issue for a while, unless and until there is good data showing a real advantage in using second gen first line (esp in patients who may do quite well enough on imatinib: if they can be identified).  But that for me makes the case for the second and third generation TKIs to be available for patients who on any basis need them, ie as second and/or third line treatment, more obvious.  There the benefit over imatinib is clear already. 

Really positive to hear what he said and wow has the treatment of CML come a long way in a dozen years. NICE does not seem to be living in the same world.

Richard  

Thanks for this Sandy it has really cheered me up, just to hear the words "normal life expectancy" at the end is brill, i hope NICE will see this interview.

Thanks again

Naomii

Just what i needed to hear.

Thanks Sandy

Emma x

 

I am a living example how important 2nd generation TKIs are.

In June 2004 I was in Blast crisis after having failed Glivec miserably.  I traveled to MD Anderson to get a transplant, if I wasn't already past help.  Dr kantarjian was my Leukemia doctor -- a good man.  After careful examination, he confirmed I was in blast.  He was the chief investigator for the AMN 107 (tasigna today) Phase I trial at the time, so he enrolled me in that program to try to get me back to the Chronic stage.  It took three months but I did regain the Chronic stage,

I wanted to stay on the drug and go home, but there was no history on how long I could maintain the Chronic phase.  I took his advice and had a sister donor SCT in October 2004.

Advance ahead to 2006.  I started growing tumors on my legs, face, and pelvic area.  I was covered with these tumors.  I asked for a bioposy to be taken and sent to the MD Anderson lab.  My oncologist was tottaly preplexed and so was I.  A couple of days later the biopsy indicated I had Extramedullay CML.  The disease had tumorized and I was again in Blast crisis.  My transplant doctor wanted me to return for another transplant,  I was showing so much GVHD that they didn't want to do a DLI with my sisters remaining stem cells. They wanted to do the transplant with another donor.

I gave it a lot of thought. I hadn't healed enough from the first transplant, didn't know whether I could live through another,  It was now late May 2006 and dasatinib was going to be approved on june 20, as I recall. I ask my oncolights if he would still take care of me if i found some dasatinib to take before the approval date.  He agreed to look the other way. I had surgery to remove the largest tumors in my pelvic area and I was able to find enough leftover dasatinib from the CML community to start straight away.  WIthin three or four weeks all the tumors had disappeared. Within six weeks I was undetectable by BMB and PBPCR.  I've been undetectable since.  I know things can change from one minute to the next, but I so much appreciate getting this new lease on life,

Although I'm a Yank, and we certainly have enough of problems with our health care system, I'm very disgusted with NICE.  There are plenty of stories like mine,  Did anybody check?  I've had two 2nd generation drugs save my life now, Tasigna and Dasatinib,

I was emailed from a survey agency in london.  I think Sandy gave them my name??  They wanted to know if i would take their suvey even though she did't give me much information at the time,  I agreed and the next day a lady called and said the survery would last about 45 minutes,  To my surprise it was all about Sprycel.  I gave her the basic history that I just gave to all of you,

She really didn't tell me what it was all about, but I surmize they are looking for success stories....maybe to present to NICE.

Sincerely,

Don

Dear Don,

Thanks for setting out your story here, I did't know Dr Kantarjian was your doctor. He is pretty impressive, I was especially impressed with his take on how clinicians like him might use 2nd generation TKI's in the future -given the problems of cost. His idea that a newly diagnosed patient might be treated with one of the 2nd gen TKI's first until a 'deep' molecular remission was acheived then that remission could be maintained  over the long term with imatinib (which would be out of patent and therefore the cheapest TKI).

 

There are many amazing stories come out of the last decade, but yours is a 'stand out' one for me and is one example of why it is so important to be in the right place, with the right clinician.  ....especially given the difficulties we are having here in the UK.

 

Remember NICE is described as an ALB (arms length body) of which the UK goverment (of whatever flavour) make use of to control costs. The problem for them since the advent of drugs like imatinib and targetted therapies in general is that the methodology used by NICE in the appraisal processes, is not fit for purpose in such cases as rarer cancers, targetted therapies etc. and with more and more diseases being molecularly 'mapped' even the so called common cancers will be divided into ever smaller subgroups depending on the different molecular pathways that drive them. So I see the day coming fast when all cancer types will treated according to their molecular markers and 'personalised medicine' will be a reality. How we pay for it is for another conversation- but Dr.Kantajian has at least opened the discussion in a positive way. I am impressed.

 

Re: someone contacting you about the survey- I didn't give your name as I was not asked for patients outside the UK and I would never give out contact details without asking for permission from the individual concerned. I take data protection very seriously.

However, I was asked if I could provide global patient advocacy group contacts, so maybe one of the US groups gave your name?

Best as always,

Sandy