[JaveajamesParticipant]

Hi. I live in Spain and feel quite isolated as I have not come across many people with MM. I was diagnosed ten months ago and was immediately put on Velcade and then three months ago had a stem cell transplant. My response has been classed as "partial to good" with just under 90% reduction in paraproteins. My consultant has now discussed with me the options for maintence treatment, suggesting either thalidomide or interferon. Thalidomide was not the favourite choice as I had quite bad peripheral neuropothy when I had the velcade, and Interferon I am not sure it would suit me becuase of the side effects, particularly possible depression.
I am generally feeling quite up beat about my condition, but need a maintenance dose that is going to allow me to get my life back, however long that may be. I wondered if anyone had any thoughts or experience on this.
James.

[brochoParticipant]

Hi James welcome to the ste I am sure you will get lots of replies Sorry I cant help much with the maintenance issue as I chose not to have any after my sct 4 years ago . Bridget

[JaveajamesParticipant]

Hi Thanks for your comment Bridget. Did you choose not to have maintenance because your paraprotein levels were very low, or because of the side effects? What was sct? James

[brochoParticipant]

Hi James sorry sct is stem cell transplant too lazy to write the whole thing!! I chose not to have maintenance – Thalidomide, because I felt I needed a break from all the drugs I was diagnosed in August 06, before I could have any chemo I had to have surgical reconstruction on my spine as 3 vertebrae had been destroyed before Iwas diagnosed By the time I had the transplant and spent 5 weeks in hospital I felt enough was enough!! My partial remission lasted 18 months during which time I lived a nearly normal life Bridget

[eveParticipant]

Hi James
Welcome to the site.
It,s my husband with Myeloma,he is in remission after ctd then vcd,and going to Kings this month to see if sct is possible,because he is on Myeloma X1 trials,he will be randomised either for treatment or no treatment.

At the moment we do not think SCT will be the solution,as his lungs were damaged with pneumonia and lots of blood clots,after the computer makes decision,he can come off the trials any time he likes.so its a wait and see game!!!!
There are people on here who take a maintenance drug,to me it sounds like a good idea,I cannot remember the USA link,but its worth looking at as they are way ahead of UK for treatment.Eve

[avantrompParticipant]

Hello James
I am receiving maintenance treatment and have been taking lenalidomide (trade name Revlamid) for two years. I have no neuropathy whatever and at the hospital they say that this is one of the advantages of lenalidomide. I am taking part in a trial and was randomised for lenalidomide and the other group received thalidomide. However the pills are very expensive and perhaps this is why they have not been suggested for you. I have had no SCT because I was considerd too old when diagnosed (65). I hope you find a treatment that suits you.
Annette

[scott9Participant]

Hi James

I started maintenance therapy last July straight after the main treatment. I didn't have stem cell transplant as my kidneys were wrecked. I'm also on lenalidomide (Revlamid) and its working fine so far. I'm encouraged to see that Annette has been on it now for two years. I do have neuropathy as I was on Velcade and got it from that.

Good luck

Scott

[JaveajamesParticipant]

Hi everyone. Many thanks for your comments. I went to see my local consultant today and he agrees that for me there are disadvantages with both thalidomide and interferon and to my suprise he recommended that I should take lenalidomide. The big snag is the cost and it will need the Spanish Health Department in Madrid to approve it, but he is hopefull. So I am keeping my fingers crossed and in the meantime starting a monthly regime of bisphospherates and looking forward to no maintenance drugs for the next month. I would love a chat with anyone with MM who might be living in Spain. James

[tomParticipant]

Hi James

I hope that you get the best one for you as you know not one size fits all in this deck of MM

All the best

Tom"Onwards and Upwards"

[scott9Participant]

I guess from your sign on name, you live in Javea. We are hoping to get out to our casa in Villamartin for 10 days next month, but thats a bit far from Javea.

Hope you get started on the maintenance therapy soon.

Scott

[JaveajamesParticipant]

Again many thanks folks for your comments. Very useful in forming an opinion. Unfortunately my consultant rang today and told me that the authorities in Valencia want me to try interferon, rather than lenolidamide as recommended by him as a maintenance therepy. I am not suprised as Valencia is strapped for cash and it would cost over 50k sterling per year. My consultant, Alex, is a brilliant guy who has treated me really well and has done his utmost to get the best for me to get me well again. I have an appointment to go and see him tomorrow to discuss this further.
On the bright side, Spring is beginning to break through here in the Costa Blanca, at last, and all the almond blossoms in the orchards are in full bloom and it looks a great site to see.
James

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