Revlimid trial in France

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cavalier
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Revlimid trial in France

Post by cavalier » 23 Sep 2012 13:45

Hello everyone,

This is my first post and I thought it may be of interest or even encouragement to some of you. I am living in Northern France, 72 years of age, married with 2 children, both at school here (I was a late starter) and was diagnosed with MDS back in 2006. As the illness progressed it was found necessary to be transfused regularly (once or twice monthly from 2008 onwards). Various treatments were tried without any noticeable effect until I was asked to take part in the clinical trial of Revlimid (lenalidomide) in September 2010. Without going into too much detail, the trial consisted of 24 cycles of treatment, of which the last cycle has just finished and I see the doctor next week for my final check up and tests.

During the 3rd cycle the effect of the drug kicked in and my transfusion dependency ceased (last one in February 2011). The doctor, here in Boulogne, is very pleased with the way I've responded to the trial and we are both very interesed to see what my blast count will be (started off at 4 and dropped to 3 during the trial). I have asked for a copy of the overall results of the trial, but as the control rests in Paris that may not be forthcoming. If I do manage to get a copy I'll do a further 'post'.

Needless to say, I feel much better, both during and at the end of the trial. I have a large garden (for me) and am now busy getting it back into shape after two years of neglect. Before the trial, I was feeling dispondent, lethargic and showed very little interest in what was going on around me, but now I feel like a new man ( long may it last). I hope this offers some encouragement to other MDS sufferers.

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.
janetstanford
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Re: Revlimid trial in France

Post by janetstanford » 24 Sep 2012 17:29

Hello
Glad you posted brill news about the trial working and giving you your freedom back :D i am transfusion dependent and i know how this can drive you insane energy levels :( sleeping all the time cant do a lot constant regular trips to the hospital and to top it off iron overload :(
your family must be so happy and your children seeing your health improve it will be great for them also ......
Good luck with the garden hope the weather is better there here we have flood warnings out glad my street is on a slope i live half way up or is that down :lol:
well do hope you have the time and are able to post even you do not get the results of he trial
take care Janet
Bobby Shaw
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Re: Revlimid trial in France

Post by Bobby Shaw » 25 Sep 2012 14:10

I have benefitted from reading the Forum for 3 years, but have not contributed as I live in Switzerland. I am 68, diagnosed in 2008 with low-risk MDS (RCMD), normal cytogenetics but significant fibrosis of the marrow. There is no Centre of Excellence for MDS in Switzerland and my local haematologist has no other MDS patients (though she has been absolutely magnificent in her care). So I approached Prof Mufti at KCH for his advice. With my Hb at 8.6 by December 2008 and my feeling rather weak, Prof Mufti started me on darbepoetin (Aranesp). This worked for 9 months, but then my Hb started dropping quickly. When Prof Mufti saw me in September 2009, he immediately ordered a blood transfusion and started me on a combination of Aranesp and G-CSF (Neupogen). Again, my blood counts held steady for about 9 months, but then my Hb started dropping fast and I needed two units of blood transfused every 3-4 weeks. In August 2010, Prof Mufti recommended that I apply for the phase 3 clinical trial of Revlimid: I assume this is the same trial (MDS-005) that Geoff is part of. I applied and was accepted, but it was hard and expensive to meet the conditions of the trial, especially the weekly tests in London. Meanwhile, my Swiss haematologist persuaded Celgene in Switzerland to give me three cycles of Revlimid to test my reaction. Just like Geoff, I started to respond during the third cycle and have not had a blood transfusion since March 2011. The difference in energy and morale is extraordinary. My wife and I have been able to go back to a fairly normal life and re-start our determination to visit the places and do the many things on our "bucket list". We are incredibly grateful for the wonderful medical care I have been given in London and Geneva. We know I have been lucky in my response to Revlimid (in comparison to other non-5q- patients treated with Revlimid in MDS-003), but hope the phase 3 trial and other research will give hope and respite to other MDS patients.
chris
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Re: Revlimid trial in France

Post by chris » 25 Sep 2012 19:06

Dear Geoff and Bobby

Goodness!! WE are getting quite international on this Forum - so wonderful to know that you have been deriving benefit from the Forum, Bobby, I think sometimes that just reading about other people with this disease can be a reassurance in itself - at least you don't feel like a lonely freak!!!

Great news too about the benfits you have had from the trial. What does this mean for you both in terms of continuing this treatment? Geoff - it sounds like you have finished but that the effects are lasting? Bobby - it must have been very difficult to arrange to do the trial from abroad - well done on your perseverance. Hope you are enjoying ticking off items on your "bucket list" but hope you will not be as disgraceful as Jack Nicholson!!!

Did either of you experience any side effects as I understand that this can be an issue for some patients?

If this drugs works on some non del 5q patients, it will be interesting to see if they can identify which patients are likely to benefit.

Love Boulogne, Geoff, many happy memories of day trips there on the "wine run" before they stopped the ferries from the UK and sent them all to Calais!!!

Great to hear from you both and keep us all updated.

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Bobby Shaw
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Re: Revlimid trial in France

Post by Bobby Shaw » 26 Sep 2012 13:05

Dear Chris,
Many thanks for your welcome to the Forum. Diane and I both find it useful, and we have also been able to attend Patients' Forums in London and Edinburgh--great for knowing the amazing diversity of symptoms and experiences that are covered by those three letters MDS.
I would be very interested to know if Geoff is no longer taking Revlimid. I continue to take it (10mg doses on a 3 week cycle) on the advice of doctors at KCH and Geneva. Not much is known about long-term responders. Clinical trial MDS-002 showed that only 1 in 4 non-del5q- patients responded and for a median period of 42 weeks. But a handful seem to respond for much longer. Prof Mufti at KCH has one patient who has responded for 8 years but is, I think, still taking the drug. I have had one bone marrow aspiration at KCH in the hope it might help Dr Austin (in charge of MDS-005 there) determine why I am responding--a key question for others. I should clarify that I am not part of the clinical trial at KCH, because of the logistical problems. After my test period with the drug provided by Celgene in Switzerland, my haematologist here managed to convince my insurance company to pay for the drug, which it is still doing.
I have had side effects from Revlimid, but they have all been very minor compared to the benefits. I had itchy skin, especially on the scalp, for several months. I have also had diarrhoea continuously over the last 18 months. And I have occasional dizzy spells.
I promise not to be TOO disgraceful over the coming months! All good wishes, Bobby
cavalier
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Re: Revlimid trial in France

Post by cavalier » 27 Sep 2012 16:45

Hello everyone,

This is my second shot at replying to Janet, Bobby and Chris, hit the submit button and it all disappeared into the ether. Anyway here goes again. Saw the doctor on Tuesday for check up and last blood test and myelogram (sent on to Paris). Although the trial is now finished for me they would like me to continue taking revlimid because of its obvious beneficial effect and minimal side effects. Like Bobby, occasionally it is wise not to stray too far from the loo - fortunately not very often. Any other problems are attributed to my immune system being not what it should be, because of my illness, and I would have these before the start of the trial so revlimid cannot be blamed. In my case, it is assumed that MDS and having a shot up immune system are linked so I was being treated for both at the same time. In the case of the latter a twice weekly injection of granocyte does the trick and it doesn't seem to matter if I miss one occasionally. My weekly blood test (shortly to be monthly now) also includes my neutrophil level so the frequency of granocyte jabs can be adjusted accordingly - providing the test is done before 1000, the results arrive online by 1800 the same day. Pity some government departments are not as quick!

Sorry about your iron overload Janet, how are you being treated for it? My iron level built up during my time being tranfused and I was on maximum dose of exjade to cope with it. After the start of the revlimid trial and the cessation of transfusions, the iron level slowly started to reduce until there was a sudden reversal and massive build up. The jury is still out on what caused it, a scan showed unacceptable levels of iron in both the liver and spleen. The hospital started making noises about blood letting to reduce the iron - typical, all that time giving me blood, and then they wanted it back! Thankfully my doctor is more level headed and proposed some self help would solve the problem i.e. an iron free diet and to drink green tea with every meal. May be an old wives tale, but in my case it worked - after two months the iron level was under control and a month later it bottomed out. I came off exjade and asked or a prescription for steak from the butcher ( I don't think she believed me when I said it was standard practice in the NHS for all patients with low iron levels! Janet, please accept my apologies if I am being insensitive but it is my way of trying to be cheerful and pass on some little cheer.

Chris, the wine run still is alive and kicking, judging by the number of brits getting under my feet with laden trolleys in the supermarket! It gets worse in the weeks up to Christmas!

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.
janetstanford
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Re: Revlimid trial in France

Post by janetstanford » 28 Sep 2012 13:51

Hello Geoff
Insensitive no not at all so good to get your post all those comments and moans about iron overload you know how i feel ...as you said hospital made comments about blood letting yuk !!!!! my doctor was always going on about it i was paranoid till 1 day he told me not to worry about it ??? unreal i did tell him the only reason i had mentioned it was because HE mentioned it so much sweeping statements like "can you wait another week for your transfusion " .....
i am on Exjade like you highest amount by weight i started on this Jan 09 my iron at that point was 6400 (seriously) and last month it was at 1900ish so it is working i have scans on heart ect to ensure the exjade is doing its job and my last my showed iron of only 4.9 which Is good ...You said your levels dropped and then increased i know when you have any type of infection the levels can swell/increase so this may have been it ...iron free diet hmmm? but the green tea i think could be another matter entirely i shall look into that as well as the wheat grass anything that helps :) also will have to Google granocyte what is this
so pleased you are still able to take revlimid as it has improved your health given you your freedom back it would be so wrong to have to stop and go back to transfusions as we know quality of life is not good you seem to wait around for the next 1 and those 3/4 wks do pass so quickly ....
well Geoff i have talked too much :) look forward to your next post Janet
cavalier
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Re: Revlimid trial in France

Post by cavalier » 29 Oct 2014 11:33

Hello everyone,
Just a quick update on my Revlimid treatment here in France. I continue to respond well and have had the dosage reduced within the 21 day cycle to alternate days only, earlier in the year. As there were no adverse effects, the dosage was even further reduced to 9 days only, also within the cycle. A recent bone marrow biopsy (they take the sample via the sternum here, with very little trauma and no anaesthetic) has shown a reduced blast count of 1.5 (started off when first diagnosed at 4 dropping to 3 during the Revlimid trial). This is, of course, very good news and both the doctor and myself are over the moon with the result.

On the down side, because of my immune system being shot up I am susceptible to picking up unwanted bugs and was recently hospitalised for 5 days with an infection. So as not to interfere with the treatment being used, Revlimid was suspended for 3 weeks and I am now back on the original cycle whilst my Hb level is monitored (it dropped slightly during my hospitalisation). Both the doctor and myself do not think Revlimid has any bearing on my susceptibility and it is a case of 'wait and see' whilst attempts are made to improve my immune system.

Here, in France, you are expected to do your own bit to aid recovery and so I continue to partake of a couple of glasses of red wine daily !

Best wishes to you all,

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.
chris
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Re: Revlimid trial in France

Post by chris » 12 Nov 2014 11:02

Hi Geoff

Glad to hear you are getting good improvements with the Revlimid - especially the blast count which is a bonus! Sorry to hear abot the infection and glad it is now all cleared up. I was surprised that you and your doctor did not think that the Revlimid was linked to the infections as I thought that Revlimid lowered white cell counts which, of course, makes you more suscpetible to infections?! I know that some del 5q patients on Lenalidomide in the UK are given regular GCSF injections to help improve their white cell count but, as with many things, medical or not, France and the UK do things differently!

I am sure the red wine (in moderation!!) will help - so keep it up!

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
cavalier
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Re: Revlimid trial in France

Post by cavalier » 27 Nov 2014 12:55

Hi Chris,

Many thanks for your reply. To clarify my remark re Revlimid not being linked to a lower white cell count. I did a double check on my blood analysis records (they go back for several years and long before I began being treated with Revlimid). They indicate wildly fluctuating white cell counts ever since I was first diagnosed and regular blood tests began. Revlimid did not alter this situation apart from lifting my Hb to an acceptable level and putting an end to transfusion dependency - hence my remark about not believing Revlimid was at fault. However, I will bring this up at my next hospital appointment to see if the doctor has changed her opinion.

On a positive note - my latest blood test indicates the white cells have now 'normalised' and granocyte injections have ceased. I was wondering if this had anything to do with my switching from Bordeaux to Cote de Rhone? This will need an extensive trial and careful monitoring.

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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