New lenalidomide patient

Posts related to the sub-type 5q deletion

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Joined: 27 May 2013 09:58

New lenalidomide patient

Post by Leedean2920 » 21 Jul 2013 19:32

Hi Fiona, hope you don't mind me interrupting this conversation. I too have been diagnosed with MDS 5q-, back in 2011. I am 52, and have now had 2 transfusions. This week I am due to start with Lenamidolide, any advice or experiences you can share? Needless to say I am pretty apprehensive about the whole thing. Thanks, K
Sarah Reakes
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Joined: 11 Aug 2011 17:51

New lenalidomide patient

Post by Sarah Reakes » 21 Jul 2013 23:42

Hi K,

I too have del 5q and was diagnosed in 2011 but so far my bloods are stable and I have not needed transfusions. I note that you only joined the Forum in May 2013, and so I wondered if you have already spoken to Sophie, from Patient Liaison who may have sent you a package of information on the various forms of MDS. This information although helpful, can in itself be a little overwhelming to try and take on board and digest.

If you haven't spoken to Sophie then I suggest you do so as she may be able to point you in the right direction regarding your query with regard to starting drug treatment with Lenalidomide. You do not say where you live or where you are being treated. Also you should be able to talk to the Clinical Nurse Specialist assigned to you any time in between appointments or even with the Specialist himself via his Secretary if you do have any concerns or queries.

By the way, if you wish to communicate with Fiona privately you can send a personal message (PM) or an email to her and she can then respond to you directly in the same way. This method is more likely to get a response since each recipient is notified by email when a PM has been posted to you from the Forum which is another way round it and might suit you better. Forum Members don't tend to look at the MDS Patient Support Group website/Forum every day and so it can be quite some time before your message may be read.

Best of Luck.

Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
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Joined: 27 May 2013 09:58

New lenalidomide patient

Post by Leedean2920 » 22 Jul 2013 19:42

Thanks Sarah, I haven't spoken to anyone as yet. I have just been trying to get along, burying my head in work and family. I live near Oldham, Lancs. My BMT when it happens will be at The Christie, currently I am being treated at the Oldham Royal hospital.

I have been on watch and wait for 2 years, and only recently when my red counts dropped to 7 have started the transfusions. I have emailed Fiona. Thanks for your advice.

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Joined: 20 Nov 2008 14:05

Re: New lenalidomide patient

Post by sophie » 30 Jul 2013 16:37

Dear K,
welcome to our online messaging forum.
Please feel free to email or call me - or indeed contact Fiona via a private message on here.

I moved your message from the original folder (in My Experiences folder) as your query was about lenalidomide.
I re-posted it in the relevant 5q- folder - so it is easier for people to find - and you now can carry on this conversation in this 5q- folder. This is your particular topic.

We have another patient, Rosa, who has been on lenalidomide for 2-3 years now - and I know of a french patient who has been on it for 8 years. Both are doing very well.
Lenalidomide works very quickly - so you should start noticing some benefit soon.

Please do get in touch - try and attend a support meeting if you can.
We also have many successful transplant patients you could speak to.
We will have our annual MDS info day in London on the 4th October. Do try to come.

Warmest regards,
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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