Revlimid trial in France

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christina
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Re: Revlimid trial in France

Post by christina » 16 Sep 2013 18:44

Bobby and Geoff. many thanks for your replys, I think like you the Darbepoietin has stopped working as I am on the highest dossage 500mg weekly and now having transfusions monthly. Good luck with your travel arrangments Geoff, you both make my trip up from Sussex feel like a walk in the country. Am up at Kings on the 30th September so hopefully have more positive news when we meet up, Best regards to you and your families Christina
christina
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Re: Revlimid trial in France

Post by christina » 24 Sep 2013 17:12

Hi Geoff and Bobby just one question, you talk of cycles and how after the third cycle you started to feel the benifit, can you tell me how long a cycle is. I am up at Kings on Monday for a routine check so hopefully I may get some news. Thanks Christina
Bobby Shaw
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Re: Revlimid trial in France

Post by Bobby Shaw » 24 Sep 2013 18:10

Hi Christina,

The Revlimid cycle is 28 days--three weeks with a pill a day and then a week off. I only responded to a 10mg dose (having started off at 5mg), but I know that Geoff responded to 5mg and is still at that level. I hope all goes well on Monday and we look forward to meeting you later that week.

All good wishes,
Bobby
cavalier
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Re: Revlimid trial in France

Post by cavalier » 25 Sep 2013 13:32

Hi Christina and Bobby,

It is as Bobby says, there has been no change in the treatment I receive and it continued, seamlessly, when the trial was over. Still hoping to make the meeting next month so I look forward to meeting you all.

Best wishes,

Geoff
Geoff (M) age 77. Living in France, diagnosed in 2006. After being successfully treated with Revlimid between 2010 and 2015 when it ceased to have any beneficial effect is now back to regular blood tranfusions whilst a new course of treatment is sought.
christina
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Re: Revlimid trial in France

Post by christina » 27 Sep 2013 17:36

Many thanks for your replies, great to have so much info, keep well and see you next week all the best Christina
christina
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Re: Revlimid trial in France

Post by christina » 01 Oct 2013 17:36

Hi everyone, well today I took my first dose of Revlimid after my visit to Kings yesterday, everyone was so supportive and have now been reading back at your posts Bobby and Geoff as it helps a lot to have that information. Feeling very positive but know not everyone responds but glad to be given the chance to try it, however wished I hadn't read the possible side effects page. Would be interested to hear from anyone else on this drug and look forward to hearing more on it at the Forum on Friday, See you there regards Christina
Leedean2920
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Re: Revlimid trial in France

Post by Leedean2920 » 20 Oct 2013 22:02

Hi Christina, I am now on my 3rd cycle on Revlimid 10mg. My red counts have increased from 71 to 131. I am over the moon. Couple of infections along the way...nothing more. I had been receiving transfusions regularly, although to be fair I had only 3 before I was prescribed this drug.

I have been told I will need a transplant, however I believe the Revlimid should see me ok for on average 2 years.

Good luck, hope all goes well.
K
janetstanford
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Re: Revlimid trial in France

Post by janetstanford » 21 Oct 2013 19:42

Hi
Such good news that your treatment is working so well I am really pleased and I know the relief when the treatment works I was transfusion dependent for 5yrs before march and only had 1 transfusion since I am on cyclosporine had a few issues with infections and migraines ect but on the whole very good
May it work for more than 2yrs I am so pleased for you :D

Janet
cavalier
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Re: Revlimid trial in France

Post by cavalier » 29 May 2015 16:39

Hi everyone,

I've been holding back with this update to see if things change or stabilize in my Revlimid treatment. For some reason, in January, Revlimid seemed to have lost its effectiveness with me, resulting in a resumption of transfusions and both Granocyte and Neorecorman injections. I was wondering if anyone else, being treated with Revlimid, has had a similar experience. The treatment continued until April to see if it would once again have an effect, to no avail, so my doctor here in Boulogne decided to stop it. Two bone marrow biopsies, one in January and one two weeks ago showed no change from others taken when Revlimid was having its marvelous effect. So I am puzzled by all this. Our nearest 'centre of excellence' is in Lille,to where I was referred a couple of weeks ago, to see if I was suitable material for another trial. The 'professeur' there was of the opinion that I was lucky that Revlimid had been effective with me for over four years. Anyway I am now 'short-listed' for any other trial that may come up in the future and am waiting to see what treatment, if any, my doctor recommends.

Best wishes to everyone,

Geoff
Geoff (M) age 77. Living in France, diagnosed in 2006. After being successfully treated with Revlimid between 2010 and 2015 when it ceased to have any beneficial effect is now back to regular blood tranfusions whilst a new course of treatment is sought.
Bobby Shaw
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Re: Revlimid trial in France

Post by Bobby Shaw » 31 May 2015 14:13

Hello Geoff,

Great to hear from you again, though I am sad to hear that your response to Revlimid has come to an end. This was probably inevitable--one recent article on MDS bemoans the lack of new effective agents to treat MDS and says that "currently available thérapies will fail the majority of patients within 2 to 3 years after treatment initiation even if there is an initial favourable response". You (and I) do seem to be extremely lucky to have had four years of transfusion-independence on Revlimid. The results of the clinical trial MDS-005 on Revlimid for non-del 5q patients have just been published. Just over a quarter of patients on the trial became transfusion-independent and for a median time of 33 weeks (compared to the four years that you and I have experienced).

A couple of suggestions for you to consider:
1) When I have asked Prof Mufti and Dr Austin at KCH about what might happen when I run out of response to Revlimid, they have said that some people get additional response from a combination of Revlimid and EPO. Unfortunately, my insurance company in Switzerland has said they will not pay for the EPO (which is terribly expensive here) until my condition worsens. But it might be worthwhile for you to ask about in Lille.
2) I have just found a fascinating article in Blood Journal on Recent Developments in MDS by Rafael Bejar and David Steensma (dated 30 October 2014-Volume 124, Number 18). It is technical: as a non-scientist, I understand about one sentence in ten. But it does contain a long list of "Agents in development for MDS in clinical trials that are actively recruiting patients". Perhaps worth discussing with your prof in Lille.

A quick update on my own situation. I am still responding to Revlimid. It has now been over four years, but there has been a steady decline in my haemoglobin counts over that period and I am now just around 100 (hence my interest in future possibilities). Diane and I are continuing to fill out our bucket list! We went to the southern Philippines and Palau on a liveaboard to snorkel with whale sharks in March. Fabulous experience, but I was stupid enough to gash my shin which got badly infected. Hgb plummeted to 88 and I had to be evacuated. Fortunately, antibiotics kicked in quickly and I am now fine. But I owe all the extra time and expériences I have had to a marvellous wife and to the outstanding care of everybody in the Haematology Department at King's from the top-flight consultants and nursing staff to the women on the front desk and the secretarial staff. To all of them I am immensely grateful.

All the best to readers of this forum,
Bobby
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