Another webinar

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Bobby Shaw
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Joined: 04 Jan 2012 06:52
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Another webinar

Postby Bobby Shaw » 06 Apr 2017 11:36

I am sorry to be posting this at such short notice, but I have just seen the announcement of another webinar on MDS that might be of interest to some readers of this Forum. This one is entitled "Current and Emerging Therapies for MDS" and is being given by Dr Mikkael Sekeres: I have heard him talk several times before and have found him to be lucid and easy to understand for non-professionals (in contrast to some recent webinars which seem determined to blind listeners with genetic jargon that still seems unrelated to the real world). The webinar is at 6pm UK time tomorrow evening (April 7) and can easily be found on the home page of the Leukemia and Lymphoma Society--www.lls.org.

Since I am posting, I should use this opportunity to thanks most deeply all the staff who have looked after me so brilliantly over the last eight years. I was diagnosed with low-risk RCMD MDS in 2008 with the slight complication of moderate marrow fibrosis (which seems to lower survival rates and makes biopsies more difficult). I needed immediate treatment as my haemoglobin was falling in the range of 8. So I went through darbepoietin and G-CSF, which helped for a few months. I was then having red blood cells transfused for a year or so before consultants at King's suggested a clinical trial with lenalidomide (Revlimid). Since I live in Switzerland, this would have been difficult logistically. Fortunately, my haematologist in Geneva persuaded my insurance company here to pay for the (hideously expensive!) lenalidomide treatment. That was just over six years ago and I have been transfusion-independent since. In recent months, I have had to have weekly EPO injections to restimulate my response to the lenalidomide. Eventually, I know that I will stop responding to the drug. In the meantime, I have been able to enjoy life immensely. So, profound thanks to Prof Mufti at King's, his colleagues, clinical nurses and all the front and back office staff, as well as my haematologist and her staff in Geneva.
christina
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Joined: 07 Mar 2013 11:22
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Re: Another webinar

Postby christina » 02 May 2018 03:29

Hi Bobby its a year since your post and I'm wondering how you are, as we were so similar in our medication, the Revlimid I have been taking for 3 years appears to have stopped working after giving me a good quality of life and enabling me to travel overseas regularly, so now after a week spent in Kings I have the choice of a transplant or going on to Azacitidine, I'm 72 this month and although my consultants seem to think I'm strong enough for a transplant I'm not sure about it at all and think I will go the Azacitidine route. I know we've chatted at the forum s a few times and I once bumped into you and your wife at Kings, sincerely hope all is well with you, haven't been on this site for a long time as life has been full and busy, not sure what's going to happen in the future but feeling positive, regards Christina
Bobby Shaw
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Joined: 04 Jan 2012 06:52
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Re: Another webinar

Postby Bobby Shaw » 06 Jun 2018 12:37

Hi Christina, Sorry for the delayed reply: I had tried to send you a personal message, but fear my technological incompetence means it did not reach you. Diane and I want to wish you every success with azacitidine, and hope we will follow your progress on this forum. I suspect I am reaching towards the end of my response to lenalidomide--I have essentially been transfusion-independent for slightly more than 7 years, though the response has only been possible through weekly injections of epoetin beta to stimulate the lenalidomide over the last couple of years. My Hb is now just below 9, a level at which I feel pretty tired most of the time: it has been falling fairly steadily over the last year. But Diane and I have been able to travel every year and to do most of the things we have wanted to do in retirement (I am a couple of years older than you!) Like you, I have largely ruled out a marrow transplant. So, I am most interested in the experience with azacitidine and what alternatives might be in the pipeline. Hope we run into you again in the near future either at King's or one of the Forum events. Meanwhile, we wish you well. Let's keep in occasional touch. Warm regards, Bobby
christina
Posts: 49
Joined: 07 Mar 2013 11:22
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Re: Another webinar

Postby christina » 14 Jun 2018 12:42

Hi Bobby so pleased to hear from you, and Yes we seem to be traveling along the same path, I feel very lucky that the Revlimid gave me so many years of a good quality of life, along with the Epo and GCSF and like you we managed to travel every year infact last year we were away for 3 months visiting family, so I give thanks for that. Spending a week in kings where the care was incredible gave me the time to consider my options and at 72 decided that I wanted quality of life not quantity, therefore I decided against a transplant, I couldn't cope with being away from home and Pat and maybe having a year out of my life having treatment, plus only 40% chance of success, the Azacitidine way means I'm having the treatment at my local hospital which is very good and can hopefully continue to live
a fairly normal life. I started my 2nd cycle on Monday and so far so good, I did have to have a transfusion yesterday as I had slipped down to 80 but all my other counts were good. I shall still be seen in clinic at kings but only after my third cycle so won't loose touch with them. I do hope that you can sort your medication out, its an interesting journey, but fortunately they are always finding new treatments. So all the best to you both and please do keep in touch , I will certainly keep you up to date of my experience on Azacitidine, love Tina

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