Revlimid trial in France

Please post here your experiences of MDS as a patient, carer, family or friend

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cavalier
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Revlimid trial in France

Post by cavalier » 04 Sep 2013 20:59

Hello everyone,

This is a follow up to my last post in September of last year on the subject of the Revlimid trial in France. Sorry for not posting an update since then - I have not excuse to offer. I am still being prescribed Revlimid because it certainly 'delivers the goods ' in my case with a minimum of side effects. Unfortunately my doctor here in Boulogne has been unable to get any feed-back from the trial sponsors in Paris so I am unable to comment on how well others are coping on the trial. The dosage is the same as it was during the trial, my iron levels are back to normal so I no longer have to watch my diet, although I do continue with green tea!

As for my neutrophil counts - they have improved to such an extent that I no longer have granocyte jabs to boost them - last one over 6 months ago. All in all, both my family, doctor and myself are very pleased in the way I've responded to the treatment - long may it last! On the down side? I still find it necessary to 'power nap' after lunch - but I put that down to my having a 'senior moment'!

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.
christina
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Re: Revlimid trial in France

Post by christina » 10 Sep 2013 17:06

Hi Geoff was so interested to read your message, I have MDS/RARS and am on GCSF and Darbepoietin my Plarlets and WBC are all fine, however over the last few months my HGB has been going slowley down and I have had to have a monthly transfusion. Last week on my visit to Kings it had gone down 8.3 and today it is 7.6 so am having a transfusion tomorrow. Pro Mufty is hopefully going to get me on to Revlimid and I really hope he can as am 67yrs and still very active. At first in 2012 when I started on the Darbepoietin I responded really well but over the year although still on the original dosage 500mcg its been going down every month. Am very interested to hear any info you may have. so happy to hear that you are doing so well, regards (Christina Fowler)

Christina Fowler diagnosed 2009 MDS/RARS
Bobby Shaw
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Re: Revlimid trial in France

Post by Bobby Shaw » 12 Sep 2013 18:51

Hi Christina,
Sorry to hear that you have stopped responding to darbepoetin and that your Hb is now low enough for you to need transfusions. Sadly, the effect of ESAs tends to fade over time: it certainly happened to me. But you are in excellent hands with Prof Mufti and his wonderful team of colleagues at KCH.
It is not clear whether you saw the earlier posts from Geoff (cavalier) on his experience with the clinical trial of Revlimid: you can find these on the second page of "Say Hello and General Messages" and they are dated September a year ago. Those posts will give you more info about how Geoff and I have responded to Revlimid. We have both been extremely fortunate in responding well to Revlimid and have been transfusion-independent for just over two-and-a-half years.
You also don't say whether you have the chromosomal abnormality known as del5q (part of chromosome 5 is missing). Revlimid has been approved in the US and Europe for use with this sub-type of MDS, and the clinical trials show that many del5q patients respond well to Revlimid. Neither Geoff nor I have this abnormality--patients like us tend to respond less frequently and for a shorter time to Revlimid. That is why we both feel so fortunate to have responded for such an extraordinary length of time. We know Revlimid is not a cure, but are incredibly grateful for the better quality of life we have been granted.
Prof Mufti will be infinitely better than me in setting out the options you face. I just want to give you a bit more about Geoff's and my expériences, and to send you my very best wishes for the future.
Bobby
christina
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Re: Revlimid trial in France

Post by christina » 13 Sep 2013 12:16

Thank you so much for your prompt reply, so very interesting to hear your experience. Just this morning I have recieved a letter from Kings and I quote the consultant "Have discussed with Pro. Mufti and we will make an application for Lenalidomide at 10mg once a day" so I know they will do thier best, just a case of being patient, as you say I am at the best place with the best team. I shall also go to the next Forum in October and ask a few questions. Like you I don't have the abnormality del5q its just something I have heard of. Thank you again for all the info and if you don'r mind i will keep in touch, so happy to hear you are both doing so well, best regards Christina
Bobby Shaw
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Re: Revlimid trial in France

Post by Bobby Shaw » 14 Sep 2013 09:07

My wife, Diane, and I will also be at the Oct 4 meeting, so hope we have a chance to meet. anyway, please feel free to keep in touch--I hope you manage to get access to Revlimid and respond to it.
All good wishes,
Bobby
christina
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Re: Revlimid trial in France

Post by christina » 14 Sep 2013 12:11

That would be nice to meet you both, we are coming up from Sussex by train so may be a little late, we arrive at Victoria at 10.15 so shouldn't be too late. I have been reading your last September posts and found them very interesting. We try to escape the winters here as we have daughters in Singapore and New Zealand, last year I managed well travelling with the medication and was able to have blood tests in New Zealand and have been told that if needed I can have transfusions there as we have a reciprical with them, but hopefully by then I won't need them. Can you tell me if you were still taking the Darbepoietin when you went on to Revlimid, I think we may be very similar in our condition after reading your last years posts, usually everyone I meet is so different from me, anyway fingers crossed and will look forward to meeting you and Diane in October, thank you again for the input best regards Christina PS Will have Tina on my name badge and my husband is Patrick
punda milia
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Re: Revlimid trial in France

Post by punda milia » 14 Sep 2013 20:02

I will look forward to seeing you all on 4 October - Bobby and Diane; and Christina and Patrick.

My name is Diana and mu husband is Peter.

I have a daughter living in Sydney which makes life very complicated.

Diana Graver (or Lockyer)
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait
christina
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Re: Revlimid trial in France

Post by christina » 15 Sep 2013 13:48

Hi Diana thank you for your message and will be good to meet up in October, Yes its not easy when your family is so far away, thank goodness for Skype. So far we have managed to visit most winters and find it a help to be away from the cold, it takes a bit of oganising travelling with drugs and having blood tests away but I have found everyone both sides of the world very helpfull and supportive. So all the time I have the energy I will keep going. Hope you are keeping well we are all so different however its very interesting to hear others stories, take care best Regards Christina
Bobby Shaw
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Re: Revlimid trial in France

Post by Bobby Shaw » 16 Sep 2013 16:59

We look forward to seeing you all on October 4, though we, too, may be a bit late as we are flying over from Geneva that morning.

Christina, No, I was not still using darbepoetin when I began Revlimid. The darbepoetin had finally stopped working definitely about six months earlier even though I was then on a 5-day cycle of injections and was also using G-CSF (Neupogen).

Best to all,
Bobby
cavalier
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Re: Revlimid trial in France

Post by cavalier » 16 Sep 2013 18:04

Hi Christina,

Sorry for such a late reply to your posting of 10 Sept - only just seen it today - I must make more effort to visit the site daily. I think Bobby has covered everything in his postings and there is very little I can add. Happily I continue to respond well to the Revlimid (my dosage is 5mg) and I hope you too benefit from it. Reading the postings from you all who are going to the meeting has made me have second thoughts about attending too. Eurostar arrives just about the time that it starts - delays permitting - and it's possible to make the trip there and back in the same day. So I'm now busy looking at the logistics of my daughter's school run - calling in favours! Feel free to ask if there is anything else I can tell you about the treatment .

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.
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