[CMLHope] Dr. Goldman's talk on May 24th in Montreal

[Cheryl-Anne Simoneau]

Dr Goldman's talk - May 24, 2006 - Montreal

 

As mentioned in my previous message, essentially Dr. Goldman covered a short history of CML and then talked about current approaches to treatment.  When it came to the question of how Gleevec made it to expanded clinical trials,  he thought it was his patient in the UK who started a petition on line.  We pointed out that it was our very own Suzan McNamara who was present with us.  He was thankful that we corrected him.  Afterwards we were thinking that perhaps he was thinking about the petition in the UK?

 

He fielded a number of questions:

 

We brought up our interest in immunotherapy, and knowing that he is currently working in this area we were quite interested to hear what he might have to say.  He told us that he is just in the very preliminary stages of getting a clinical trial underway.  He was quite cautious to give us too many details, so we will just have to keep a watch out for more news in the future.  As you can imagine, this area of research is quite competitive!

 

Interestingly, he stated, rather convincingly too, that he felt that perhaps we might find in the future that some patients, albeit a very small fraction, might be able to stop IM (but only after several years of continuous PCRU - is there anyone who has achieved several years of continuous PCRU, without any fluctuations?)and maintain undetectable level remission similar to INF.  He is interested to find out, as others are, why this may be so.  He emphasized however, that patients should not stop IM because most patients relapse fairly quickly.  We will have to keep our eyes open for any new data about this.

 

He was asked about pregnancy (we have a few young patients in our group).  He told us that there have been a number of cases of mothers with CML on IM who have become pregnant and that this data is being tracked quite closely at Novartis.  He pointed out that some of the pregnancies have resulted in normal healthy births and children.  He spoke about one case where the patient was already 9 weeks pregnant and was on IM.  Of course the first trimester is where IM would pose the most teratogenic risk, so it is more like a case of shutting the barn door after the horse is already out.  However, after careful consideration and consultation with Novartis (who advised/suggested a therapeutic abortion) the decision was to stop IM and allow the pregnancy to continue.  Mother and baby are fine and the mother re-started IM 4 months after the baby was delivered.  He also mentioned that there were reports of spontaneous abortions, and foetal malformations, so while there have been a number of live healthy births, the recommendation is to avoid Gleevec and pregnancy, er, I mean avoid getting pregnant while on Gleevec ;>)!  Otherwise, I personally have no problem avoiding Gleevec and Pregnancy!!!! <just too funny, I couldn't resist>

 

We asked what is the significance, if any, of having hypocellular marrow for years while undergoing Gleevec therapy? Do you think that there will be any long term adverse effects from this?  Dr. Goldman that it is something that is common, but that there doesn't seem to be anything to worry about.

There was a question about at what point can a patient safely reduce the dose of IM? These would be patients who started on a 600 mg or 800 mg dose and achieved CCR. These are patients whose QOL is compromised because of side effects from IM.  His response was that the dose should not be reduced as there is no data that would support doing so.

We asked about our concern with staying on IM (or any other drug for that matter) for significant durations of time at very low or undetectable levels of disease.  The concern of course being that even at PCRU there are still quite a few CML cells that could potentially wreak havoc at some time in the future.  He seemed to be less concerned with this, saying that as long as you have a 3 log or better reduction you should just stay with IM.  In thinking about this, I wish we could have been more clear with him.  We really wanted him to talk about a true cure. 

On the subject of hormone issues with Gleevec therapy. e.g. missed menstrual cycles, heavy periods, breast enlargement, he really didn't have much to add about this but if I remember correctly, he did say that Novartis was tracking this.

He basically said that Dasatinib and Nilotinib are essentially the same drugs with regards to performance, although I do not quite understand how that could be so.  I think it is a bit premature to say that as Dasatinib has been used on more patients than Nilotinib.  However, we just have to remember that this was his opinion and he reminded us that his opinion might vary from ours and our treating doctors opinion.

We thanked Novartis for sponsoring Dr. Goldman, in fact someone from Novartis joined us, which was a bit of a surprise, it did change the tone of the meeting though.  We've had some of our best productive meetings when it is just us patients with our doctors. 

Dr. Goldman is a delightful person and we were very happy to meet him.  We thanked him and gave both he and Dr. Pierre Laneuville each a very nice bottle of wine with cards signed by all of us.  We hope Dr. Goldman will come back and visit us again as a guest of the CML Society.

I should mention that the CML Society is holding our first board meeting next week and we will be putting together our agenda of activities for this coming year.  We will be posting the minutes and updating the website so, stay tuned.

Cheryl-Anne and Suzan

 

 

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