Hallo Richard
We seem to have reached the same point. I have lived in Holland for over 30 years. Revlimid has worked brilliantly for me, for over 7 years, but my m-proteins are now inexorably rising. My consultant stopped the Revlimid 2 months ago and on Thursday I am to hear the result of his consultation with colleagues. Stopping the Revlimid…[Read more]

Hallo Ian
I had better tell you more about my dose. I went onto a research study and under its protocol I first received 10mg. Revlimid. I couldn’t tolerate it. My upper body became covered in blotches and all skin peeled. I was like a walking snowstorm. My consultant then reduced the dose to 7.5mg. He also said that my initial response was a good…[Read more]

Hallo Ian
Go into it with confidence. I was diagnosed almost 8 years ago aged 66 and was told that a sct was inappropriate for me. I went straight onto Revlimid 7.5mg. and in all that time I have been able to enjoy life to the full. I was never in recession but my m-protein remained around .5gr./L. The numbers are now very slowly starting to rise…[Read more]

Hallo Sue
I have been taking Revlimid for over 7 years and the only significant side effect for me has been diarrhoea. I cope with this very well with loperamide and Questran as needed. My Revlimid dose is very low, only 7.5mg., 3 weeks on and 1 week off. I have not had an sct and never reached remission. The possibility of a secondary cancer was…[Read more]

Hello Steve
You might like to read this thread that I came across on Myeloma Beacon.
http://www.myelomabeacon.com/forum/risk-of-progression-with-mgus-new-czech-study-t8714.html
All the best to you. Try not to let the diagnosis get you down. Even if,one day, it does become MM, research is advancing at a prodigious rate.
Annette

Hallo Lynne
I didn’t want to go into a long story about my history. (I don’t have a problem with talking about it but it takes up so much space.} I live in the Netherlands and when I was diagnosed I entered a trial (Hovon 87) aimed at testing the difference between thalidomide and lenalidomide (Revlimid) for newly diagnosed patients not eligible…[Read more]

Hallo Lynne
I was diagnosed over 7 years ago. I had no sct and was put onto Revlimid and never achieved remission. My MM markers are still very low and I have had no other treatment than Revlimid. Try to be positive about your prospects because, as Louis says, everyone responds differently to treatment.
Annette

Hallo Millie
I was diagnosed 1 Feb. 2010 and was put onto Revlimid (7.5mg.) that I have been taking since then.The first 3 years my m-protein (I think it is still called paraprotein in Britain) slowly went down until it reached a plateau of around .5gr/l. It then remained at this level until about 6 months ago when it started rising minimally,…[Read more]

Hallo
I spotted this mail on a thread in Myeloma Beacon. “Re: Fever after Zometa infusion – is it serious?”
You might find it helpful.
Annette

Re: Fever after Zometa infusion – is it serious?
by chadsnow on Thu Sep 08, 2016 4:56 am

Too late to help the original poster, but anyone who reads this later may be helped by this advice. I had a…[Read more]

Hi Peter
Do you ever go to The Myeloma Beacon?
http://www.myelomabeacon.com/forum/
The site is linked to a cancer hospital in the U.S. They have a large pool of forum entries covering every imaginable aspect of MM and the mails are all sorted, making it easy to find what you want. You can request the newsletter and peruse the forum without having…[Read more]

Hi Peter
I was told that I was too old at 66 to have an sct. I was so taken aback with the diagnosis that I didn’t pursue it. I know now that I could have pushed for it but am extremely pleased in retrospect that I didn’t have one. But that is the problem with MM. You never know how you will respond to a particular drug or treatment. A friend here…[Read more]

Hi Brian
I shall be 73 tomorrow. In my mind I feel much younger. I go shopping on my bike and I play in a large accordion orchestra.
Revlimid capsules come in units of 5mg, 10mg, and 25mg, as far as I know. I started off with 10mg but had such an adverse reaction that I went to 7.5mg, that for me means alternate days of 2x5mg and 1x5mg. I have a…[Read more]

Hallo Brian and Peter
My experience might contribute to your thinking on the subject.
I was diagnosed in Feb. 2010 and put onto Revlimid 7.5mg., 3 weeks on /1 week off. My dose has never changed and
my paraprotein has hovered for years around .5g/dl. I am at a loss to know why it has been so successful for me but long may it last!
Annette

Hallo Eric
I have a tip that may help with too loose bowels. I have been taking Revlimid for 6 years and my only real problem was unpredictable diarrhoea. I frequently had to dash to the WC with the fear that I wouldn’t make it. I learnt from an MM blogger that Questran might help so I asked my consultant if he was willing to prescribe it for me.…[Read more]

Hallo Peter
I was diagnosed in Feb.2010 and at the age of 66 was not considered eligible for sct. I see my arithmetic was a bit off and I have been treated for mm for almost 6 years. I went onto a trial (Hovon 87, in the Netherlands) so that is why I received lenalidomide straight after diagnosis. This is the only medication I have received (apart…[Read more]

Hallo Jeffery
My experience might help you to come to a decision. I was put on lenalidomide nearly 7 years ago when it was used as a single agent, not combined with Dex. No sct for me because I was seen as too old at 66. Although mm is detectable via pp in my blood I have been stable for years and my pp has never been lower, at present .5gr/ltr. I…[Read more]

Hi all
I live and am being treated in the Netherlands. It has just been reported here that Celgene, manufacturer of Pomalidomide (and Revlimid), has reached an agreement with Dutch haematologists and 6 major health insurers to provide Pomalidomide on the basis of no-benefit-no-cost. Maybe this is something to campaign for. Revlimid, that I…[Read more]

Hallo Frances
When I was first diagnosed with mm my consultant gave me a paper with guidelines for my dentist. A couple of years ago I had an infection in my jaw and took the precaution of going off the bisphosphonate for three months before the dental treatment. Before you go for treatment I would check that your dentist is aware of the risk of…[Read more]

Hallo Peter
Unbelievable! I would say completely ignore him and put your faith in a haematologist. Everybody responds differently to treatment and also there is a great deal of effective research being carried out. At the age of 66 I was told I was too old for a sct, now over 5 years later, on revlimid maintenance, I have barely detectable myeloma…[Read more]

Congratulations Richard
It’s tough learning another language in middle age, especially when you have probably only superficially learned French at school. We came to the Netherlands over 30 years ago and I didn’t have too much of a problem because I already spoke fluent German and regularly met mothers and their children outside the school gates.…[Read more]