Hallo fm 1960
This morning I read an article in our newspaper and it describes exactly what you are suffering. There is no point in copying it for you because it is in Dutch. Briefly it says:
Year-long suffering from agonising pain in the abdomen, unnecessary operations and investigations, and finally being told it is “between the ears”. This…[Read more]

Hallo All
During the months before my diagnosis my finger nails started turning up at the sides. I asked my GP about it at the time and, after the diagnosis, the consultant. They both said there was no apparent cause but I feel it must have been connected in some way to MM because my nails are now a normal shape. They grow very fast but always…[Read more]

Hallo Janet
Your description matches my experience exactly. My only solution is to keep my nails very short. Are we on the same medication – Revlimid? No problems with my teeth.
Annette

Hallo John
I just want to give you a different perspective. I was diagnosed at the beginning of 2010 at age 66. I was told I was too old for a sct and was so overwhelmed by everything that I accepted this. In retrospect I could probably have made a good case for a sct and almost certainly would have succeeded in getting one since I was otherwise…[Read more]

Hallo Tom
I suggest you take a look at this site on Myeloma Forum. There is a large collection of personal experiences relating to Revlimid.

http://www.myelomabeacon.com/forum/search.php?keywords=Revlimid+lenalidomide&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

I have been taking Revlimid (7.5mg) for…[Read more]

Hallo Ron
Get your wife to the GP as soon as possible to get anti-viral treatment. This can help to reduce the effects of shingles if taken soon enough. I got shingles 2 years ago and still feel the nerve damage on my back. My consultant has given me an undated prescription for anti-viral pills so that I can react straight away if I suspect it.…[Read more]

Hallo Dave
I started taking Revlimid 5 years ago when diagnosed with mm.(I shan’t go into the why’s etc. here.) My consultant started me on 10 mg. but I almost immediately got the same reaction as Beverley’s husband. The dose was then reduced to 7.5mg. My consultant said that he found this a good sign – I was obviously responding well to the…[Read more]

Hallo Susie
I have been taking Revlimid for almost 5 years and the persistent side effect has been diarrhoea and intestinal cramps. My solution (at the suggestion of the consultant) is to take Loperamide when necessary. For me (in the Netherlands) it is available over the counter. It works like magic.
Annette

I just want to add my experience of BNBs. Either I am very lucky with my consultant who has done it each time or else I am fortunate to have a high pain threshold but I barely feel any effects.It is a bit uncomfortable when the bone is reached but then plaster on it and forget all about it. It goes to show that everybody experiences it…[Read more]

Hello again Peter
Just a quick response to Dusk’s mail. Lenalidomide in itself has not been shown to induce secondary cancers more than any other treatment except when it was taken initially in combination with certain other drugs. Look up on internet Myeloma Beacon, “Revlimid and Secondary Cancers”. Below is a quote from the article.

“Revlimid…[Read more]

Hallo Peter
I believe that one reason why dexamethasone is prescribed rather than prednison is that there is a greater chance of a secondary cancer when prednison is taken in combination with lenalidomide. I was advised by my consultant to be alert for skin cancer.
Annette

Hallo Jeffery
I’m also off topic but I want give a warning about drinking a lot of tea. My creatinine level shot up during the hot weather so much that my consultant did a bone marrow test.He told me that tea works as a diuretic. I must still drink at least 1.5 litre water, however much tea I drink. Creatinine levels promptly reduced.
Annette

Hallo Everyone
Thought I would let you know how I get my blood results. At the last appointment I am given the blood test form with required tests ticked off. On the day of my appointment I go to the hospital an hour earlier for blood to be taken and am seen straightaway because my form has an “urgency” indication. When I then see the consultant…[Read more]

Hallo to JanT, Frances, CarolSymons, Dusk and Graham-C
I find your descriptions of trying to get access to results outrageous. I am being treated in Holland and get a printout of every blood test. When I see my consultant he turns his computer screen to show me his graphs of my progress etc. and takes time to answer any questions I may have. The…[Read more]

Hallo David
I live in the Netherlands. When I was diagnosed in 2010 I had the option of standard treatment at the time i.e. thalidomide + chemo for 9 months and then continuing thalidomide, or else I could participate in a random trial comparing thalidomide and lenalidomide (Revlimid).I was fortunate and got lenalidomide. I was 66 at the time and…[Read more]

Hallo Fiona
Just to give you my experience so far. I have been on Revlimid for 4.5 years and no sign yet of new MM activity. I wonder how long this can last. At any rate this is my first treatment so hopefully I shall have others to fall back on. Decisions, decisions !!!. Good luck.
Annette

Hallo Treakle
I would like to offer a couple of tips. Encourage your father to attend appointments with a friend or relative. There is always so much information to take in and it is difficult to remember everything. The other is, he should try to always get a printout of his blood results if he can. I find this empowering as I then have a basis…[Read more]

Hallo Ian
I get intermittent cramp in my fingers and toes, caused I think by Revlimid, but not really a problem. However when visiting Myeloma Beacon I spotted a blog section, with many entries, devoted to cramp. Perhaps you can find some useful help there. It can be very unpleasant so good luck.
Annette

Hello Jean
I thought I would just give my bit.I caught shingles 2 years ago and still have nagging pain on my back. I have been taking Revlimid for 4 years with no neuropathy but have recently been getting cramp in my toes.I decided to be proactive and (with the permission of my consultant) started taking B12. All my shingles symptoms came back…[Read more]

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…[Read more]