[avantrompParticipant]

Hello Mandy
My comments may have no relevance for you but here's my experience. My MM was discovered after investigation into various and also intermittent pains that I didn't realise were bone related. As soon as I was put onto biphosphenates the pain gradually disappeared. I grew to look forward to my monthly infusions.
Hope you find a solution.
Annette

[avantrompParticipant]

Hello Sarah
I would say definitely give it a try. I have been taking Lenalidomide for nearly 4 years with minimal side effects. When I first started on 10mg my body reacted dramatically to the dose, with blotches all over and peeling skin, so the doctor reduced it to 7.5mg. Since then I have had no problems and a continuing lowering of my p-protein.
Not everyone is as lucky as I am but what have you got to lose?
All the best
Annette

[avantrompParticipant]

Hello Dave
I have been taking 7.5mg of lenalidomide for almost 4 years, 21 days on and 7 days off. My side effects are minimal, with no neuropathy but intermittent diarrhoea. Everybody seems to respond differently so good luck with making your decision.
Annette

[avantrompParticipant]

Hi
I just want to let you know that I have been taking Revlimid for over 3 years with positive result and have had minimal side effects. I find that the greatest problem with MM is that nothing is predictable because everyone responds to treatment in a different way. However there are now many different medications and combinations and hopefully your father-in-law will soon respond to treatment. Good luck.

[avantrompParticipant]

Hello Mandy
I had an operation on one hand about 3 years ago after taking Revlimid for about 7 months. My specialist said that there was a greater chance of getting carpal tunnel syndrome if you had MM. I have been taking Revlimid since then with no effects on my other hand. The operation was a great success. However I would think twice about having both hands done at the same time. It was extremely incapacitating. I couldn't use the hand at all until it had healed. Discomfort in the hand lasted many weeks but this gradually disappeared completely.
Good luck with the operation
Annette

[avantrompParticipant]

Hallo Clare
I was diagnosed with MM in March 2010 but SCT was not considered appropriate because I was 66 (I live in Holland and the age limit is 65). At first I was concerned about this but now I am glad that things worked out this way. I was given Revlimid. At the end of the chemo (good partial response) the revlimid continued and since then my p-protein has continued to go down at a rate of about .2 per month and is now 2.6. I have no problems from the medication and carry on life as normal. I know that things can change suddenly but that is for another day. Good luck with the decisions that your mother will have to make.
Annette

[avantrompParticipant]

Hello Val
Glad to hear your good news. Have you thought of taking magnesium against cramp? A friend with MM found that it really helped.
Annette

[avantrompParticipant]

Hello Jill
I have been on Revlimid for 3 years ( a low dose of 7.5 ). The only significant side effect for me has been diarrhea, unpredictable and a great nuisance. My specialist suggested I could try over-the-counter diarrhea suppressant containing loperamidehydrochloride. This really works for me. I take it seldom but it is good to know it is on hand.
I am 69.
Annette

[avantrompParticipant]

Hallo Lizzy
My experience might help you. Since diagnosis in March 2010 I have taking part in a study comparing results between the use of thalidomide and lenalidomide (Revlimid). I was given lenalidomide 10mg. and the effect on me was similar to that described by you. I had to smother myself in creams and lotions. I was like a walking snowstorm because of peeling skin. I also got all the spots. My specialist immediately reduced the dose to 7.5mg. (alternate days of 1 and 2x 5mg. capsules. That solved the problem. I am very happy with the lenalidomide that causes very few side effects. I hope your mother soon gets settled with her medication.
Annette

[avantrompParticipant]

Hallo Deborah
I am a complete layman so don't take what I say as gospel. I have heard that a vaccination is available but it is made from a weakened live virus and is therefore not suitable for anyone with reduced resistance.
I can't say what is customary in Britain as I have been living in the Netherlands for over 30 years. My treatment here is excellent. I am a regular follower of Myeloma UK, and the Dutch CMWP.nl.
I hope it all works out for your mother.
Annette

[avantrompParticipant]

Hallo Deborah
You enquired about Velcade? About a month ago I attended the National Myeloma day in the Netherlands. Dr.Lokhorst gave a lecture on problems related to MM medication. He said that there is 50% chance of getting shingles if you take Velcade and he always prescribes zelitrex for protection. Believe me, you do not want to get shingles if it can be avoided. I am receiving treatment for MM (not Velcade) and got shingles in February. The pain is still not completely gone.
All the best to your mother
Annette

[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

[avantrompParticipant]

Hello Debs
I have now been taking Revlimid for almost 2 years but have not suffered any symptoms such as described by you. However you all (who have replied) seem to be taking such a high dose. I take 7.5mg and my paraprotein is still slowly going down. I wonder why there is such a difference in dose.
Annette

[avantrompParticipant]

Hallo all
I just want to chip in with something I heard last week when attending a regional meeting of MM sufferers (in the Netherlands). When talking about the problems of peripheral neuropathy one person said that for her it had been substantially reduced by taking Lyrica. She has now stopped taking Lyrica And the neuropathy has not returned. Sounds too good to be true.

[avantrompParticipant]

Hallo everyone
I find it helpful to read everyone's experiences, so I decided to add my bit. My name is Annette and I am British but have lived in Holland for over 30 years. I was diagnosed with MM in Feb.2010 when I was 66. My paraprotein level was way up, I think in the 70's. I was put onto 10mg. Lenalidomide (Revlimid) a day, almost immediately reduced to 7.5mg. because of my reaction to it. Until the end of 2010 I was also taking melphalan and prednison, together with antibiotics and aspirin-based blood thinner. Every 4 weeks I received an iv drip of 30mg.pamidronate. This latter was fantastic. Gradually all aches and pains associated with MM went away. Throughout this year, except for the first month, and now I just lived normally, except for increased fatigue.
Now I am on maintenance. Lenalidomide is still 7.5mg. (plus compulsory blood thinner to counteract the L. and stomach protector when needed to counter the blood thinner. My paraprotein level is still going down and is now 7.5.
MM is unpredictable so who knows what the future holds, but life is good at present.
I hope I haven't been too boring, but I want to give encouragement to new sufferers.

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