[avantrompParticipant]

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 over 5 years with no great problems, but as you see my dose is low and I do not take Dex.
All the best
Annette

[avantrompParticipant]

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. Having it once does not prevent you getting it again. Shingles vaccin is based on a weakened live virus so cannot be given to anyone with reduced resistance.
I was probably unlucky that the effects lasted so long. I hope it is over more quickly for your wife if she does have it.
Annette

[avantrompParticipant]

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 medication. He was proved right. Over the past 5 years my p-proteine has slowly and consistently gone down and seems to have now reached a plateau of .4mg./l.
All the best with your treatment and I hope you are as lucky as I was.
Annette

[avantrompParticipant]

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

[avantrompParticipant]

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 differently. I think stress beforehand only makes it worse.
Annette

[avantrompParticipant]

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 (lenalidomide) did not appear to be associated with an in­creased risk of secondary cancers when administered together with dexamethasone or cyclophosphamide.”

Other recent international study results comparing dexamethasone and prednison are also available on Myeloma Beacon.
When diagnosed with MM 5 years ago I was prescribed lenalidomide, prednison and melphalan, the exact combination that is now known to give a 5x greater risk of secondary cancers. I don’t dwell on it but do keep alert.
Annette

[avantrompParticipant]

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

[avantrompParticipant]

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

[avantrompParticipant]

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 he already has all information, with the possible exception of pp levels because the lab stores them up to work on several at the same time. In that case I ring up a few days later.
It is fantastic for people who live some distance from the hospital.

[avantrompParticipant]

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 NHS is a wonderful institution but I suspect there are also drawbacks. Everyone here has to have private health insurance and I think that very fact gives a different attitude towards provision. On most occasions that I see him (under the protocol of the international study that I am taking part in he has to see me every month) I usually wait a max. of 15min.
I am British and benefited from the NHS until our family moved to Holland in 1973, and therefore know from experience how great it is, but my feeling at the moment is “glad to be in Holland”.

[avantrompParticipant]

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 considered too old for sct. With the benefit of hindsight I am pleased that I didn’t have a sct because my quality of life is very good. I have the usual side effects of lenalidommide, low red and white blood cells, but my everyday life is not affected. I reacted severely to my first dose of 10mg so it went down to 7.5mg. The fact that my dose is so low may be a reason why I tolerate it so well. The only other medicines I take are preventative – aspirine-based blood thinner because lenalidomide makes the blood more viscous, and stomach protection against the aspirine.
I know that lenalidomide is not normally prescribed here as I received it. I’ll continue taking it until it ceases to be effective. I still have pp in my blood of .6gr.per dl. ( hope i’m not way out with my units)
Sorry this is so wordy but you did ask.

[avantrompParticipant]

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

[avantrompParticipant]

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 for questions. It also enables one to gain a picture over months of how the MM is responding to the treatment.
I hope your father soon gets settled on a form of treatment that he can tolerate well.
Annette

[avantrompParticipant]

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

[avantrompParticipant]

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 more severely than originally. Within a week of stopping the B12 they had mostly gone. I intend to steer clear of vitamins etc. in future unless prescribed for me.
I found that a hot shower on my back helped a lot. I have read that a cream based on hot peppers also helps but I couldn’t find any at the time. All the best to Frank and I hope it is soon over. It seldom lasts as long as with me.
Annette

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