Lenalidomide trials and sub-type 5q-

Posts related to the sub-type 5q deletion

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Ellenp

Lenalidomide trials and sub-type 5q-

Post by Ellenp » 19 Nov 2011 09:57

I was diagnosed with MDS in September and have been given the opportunity to go on the clinical trials for Lanolidamide. Does anyone have more details of these trials i.e. is anyone currently on the trial or have been on the trial who could give me some information about their experience. I have been given information on this but would like some idea as to what is involved by someone who has experience of this.

Thanks
chris
Posts: 637
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Lanolidamide trials

Post by chris » 21 Nov 2011 11:49

Hi Ellen

Sorry to hear about your recent diagnosis of MDS. Please look at elly's post under "My mother's journey" and you will find a thread relating to somebody else considering these trials and contributions from others on this forum. I have included in my post a link to the trials site which contains information about the trial. Also, if you go to the AAMDSIF site which is a USA one (just google it!"), you will find quite a lot of information for patients about use of lenalidomide for treating MDS as they have more experience of it in the States.

The MDS Patient Suport UK Admin, Sophie Wintrich, may also have some up-to-date infromation about this trial so please contact her.

Hope this helps

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Ellenp

Re: Lanolidamide trials

Post by Ellenp » 21 Nov 2011 12:05

chris wrote:Hi Ellen

Sorry to hear about your recent diagnosis of MDS. Please look at elly's post under "My mother's journey" and you will find a thread relating to somebody else considering these trials and contributions from others on this forum. I have included in my post a link to the trials site which contains information about the trial. Also, if you go to the AAMDSIF site which is a USA one (just google it!"), you will find quite a lot of information for patients about use of lenalidomide for treating MDS as they have more experience of it in the States.

The MDS Patient Suport UK Admin, Sophie Wintrich, may also have some up-to-date infromation about this trial so please contact her.

Hope this helps

Chris
chris
Posts: 637
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Lanolidamide trials

Post by chris » 21 Nov 2011 20:49

Hi Ellenp

Sorry but there only seems to be my own message quoted below? Was there anything else you were going to add? Click on Post Reply if so.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Ellenp

Re: Lanolidamide trials

Post by Ellenp » 22 Nov 2011 14:51

Hi Chris

Sorry about that I was just thanking you for responding and the links, I found them very useful just getting used to using this site.

Ellen
chris
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Joined: 01 Dec 2009 21:52
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Re: Lenalidomide trials and sub-type 5q-

Post by chris » 28 Nov 2011 20:01

Hi Ellen

Glad you found this info helpful. Do you have Deletion 5q (sub-type 5q-) - presume you do as you started off the topic? I read on the Home Page of our MDS site here that lenalidomide is now available for prescription for patients with deletion 5q? Maybe your area is not covered - hence the need to get the drug by enrolling on a trial?

Is there anybody else who is already on the trial who can share their experiences with Ellen?

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Ellenp

Re: Lenalidomide trials and sub-type 5q-

Post by Ellenp » 30 Nov 2011 08:40

Hi Chris

I am Intermediate1 I am not sure about the 5q del, but looking at information available I think I may be, this is something I will need to get checked out. I was unaware Lenalidomide was being prescribed for MDS, I was informed that it is used for some cancer treatments and was only in the trial stage for MDS. I am going to make an appointment to speak with Prof. Bowen at Leeds to go through the trials procedure and make my decsion after speaking with him again.

Ellen
sophie
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Re: Lenalidomide trials and sub-type 5q-

Post by sophie » 05 Dec 2011 14:01

Lenalidomide is currently being re-evaluated by the EMA - European Medicines Agency for approval.
It is used in del 5q but indeed either in trials - or by exceptional funding requests.
Some PCT's (Primary Care Trusts) may still have problems funding it - as this drug is not yet included in all regional Cancer Drug Fund lists.
Do speak to your physician about it - if there is a funding issue - but your physician thinks you might benefit - please contact us - as we are dealing with this issue in various regional areas.
Patient Liaison
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
chris
Posts: 637
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Lenalidomide trials and sub-type 5q-

Post by chris » 06 Dec 2011 12:12

Dear Sophie

Thanks for your helpful reply to Ellen. The signature works!! Can you issue instructions on how to do it or shall I?!

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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