[charisma4Participant]

Hi Everyone,
I am a newcomer who was diagnosed on Christmas Eve.My first post on here was headed ' I feel so frightened' Well, the fear has now been replaced by total confusion !!

I have been asked to join the Myeloma XI trial. I have a couple of days left before a decision needs to be made. I have talked to doctors and nurses about it, but wondered if any of you are on RCD (Revlimid )who could tell me of their experience of it.

I would be very grateful,
Lesleyx

[PerkymiteParticipant]

Hi Lesley, I have not been on this trial but several of our regulars are on it and I am sure they will give you chapter and verse shortly.

All the very best of luck

Kindest regards – vasbyte

David

[jillsParticipant]

Hi Lesley and everyone,

Can I join in with this request as my Mum (age 83) was told yesterday that she needs more treatment (PPs 35, Light Chains 10,000!) and is going to have RCDa so it would great to hear of others' experience.

Thanks

Jill

[AdrianAParticipant]

Hi Lesley,
I was diagnosed last year while working in the USA. I did 5 cycles of Revlimid, Velcade (by subQ injection) and Dexamethadrone and stopped just before Christmas when I came back to the UK. This is the latest treatment combination available and I was lucky my insurance would cover the cost which is quite high, it is not currently available on the NHS.
My disease activity is now almost nil, so the treatment was definitely effective. I am now moving to a stem cell transplant because I am in such good condition.
During the treatment, I had little in the way of side effects; I continued working all the way through, I had a little bit of nausea controlled by eating little and often, some fatigue so I took a power nap in the afternoon and a tiny amount of peripheral neuropathy which has now receded. I also had some sleep pattern disruption caused by the Dex.
If my experience is anything to go by, revlimid is the way to go. It is a generation newer and more readily tolerated than the standard treatments seem to be.
I hope this is helpful, but your Dr should be able to advise you as well.
Take care and all the best, message me if you want more details.
Adrian.

[tomParticipant]

Hi Lesley and Jill

Sorry I cant help on this one, Just wanted to wish you Luck.

Love Tom "Onwards and Upwards" xx

[charisma4Participant]

Hi Adrian,
thanks so much for your prompt reply. Your advise and personal experience of revlimid has really helped me with my decision,and has given me a much needed boost of courage.

I am so happy to hear that you are doing well. All good wishes for your stem cell transplant.

I may well need more details from you as I go along, if that's ok with you.

many thanks,
Lesley

[charisma4Participant]

Hi David,

Another face that I am getting to know ! I can see that I have joined a very select club – membership only given to the very best of human kindness.

Kind regards,
Lesley

Lesley

[charisma4Participant]

Hi Tom,

Thanks for your kind wishes.

You always make me smile with your cheery face and your "onwards and upwards"

Kind regards,
Lesley

.

[HelenParticipant]

Dear Lesley
I started the myeloma xi trial almost 2 years ago. Since then I have completed induction chemo, had stem cell transplant and now am on to my 15th cycle of Revlimid maintenance. I have been in complete remission since April 2011. I'm back at work full time, been on holiday to New Zealand and Italy, and am generally getting on with life, albeit a different life with a different perspective including many more irritating chest infections.
Which ever decision you make, good luck, you won't like any of it much – it is very hard to bear, but it is designed to give you as good a quality of life as for as long as possible, and you will get through it.
Love Helen

[charisma4Participant]

Morning Helen,

Thankyou for the information and for sharing your experience with me. I'm glad to hear that you are doing so well, long may it continue.Your story gives me some much needed courage.I think that I am only just coming to terms with the reality of it all, and the irony of it is that I feel so well – next week will change all that though, I suspect!
I have the support of my loving family, so for them I know I must put up a fight…so here goes…
Again, many thanks,
love Lesley

[HelenParticipant]

Hi Lesley
On 3.2.11 I was told I had myeloma. It was the biggest surprise and shock ever. I was the fittest and most energetic of people, though a bit anaemic for no reason, blood transfusion service told me to go and get it checked out. I was reeling from the shock. I can't quite believe that I let them give me all this noxious stuff for such a long time, even now I find it hard to come to terms with the fact that it has all happened.
They said I didn't have to make my mind up immediately about treatment, I could have the weekend to think about it but treatment would start on Tuesday ( it was Thursday ) . I chose myeloma xi because there was a chance I'd get the new drug Revlimid – it is like thalidomide but a bit more potent. I didn't feel I had anything to lose either, after all I felt I had just been given the ultimate sentence. I did cry when I signed the consent forms, partly because I found it so sad to be making a decision like this, mourning the loss of my future as I'd planned it and the total change to my life, my family my friends. I don't think I've handled it very well, I'm so mad and angry still that its me!
Anyway, it started and yes it makes you ill, I think this is part of the whole problem, it is such a silent disease that you have no intimation that there is anything wrong and then you start treatment and THAT is what makes you feel grim.
So don't feel alone out there, talk to us about how it's going, you will always get an answer from someone who has already been there or who is travelling with you, which makes you feel less lonely too.
Love Helen

[wendyduffieldParticipant]

Hi Lesley

welcome to the forum, like you as was diagnosed on Christmas eve, December 2010, there is never a good time but xmas eve is especially not a good time!

Also like you I was asked to think about going on the Myeloma X1 trial, bombarded with leaflets and then asked the next day what I had decided. I opted for going on the trial because there was the chance of getting revimid (I didn't) and because there would be better monitoring and follow up plus the chance of getting revlimid as maintenance post transplant. As it turns out I had to come off the trial as I was intolerant of Thalidomide but that's another story. I have no regrets about opting for the trial, if I hadn't I would have been given thalidomide anyway.

Wishing you the best of luck with your treatment whatever you decide.

Wendy

If you want to read more about my experience of diagnosis check out my blog post called the nightmare before Christmas

http://wendyduffield.wordpress.com/2012/12/20/the-nightmare-before-christmas/

[Pilgrim01Participant]

Hi Lesley,

Sorry to hear that you have been diagnosed with MM but you will find this site a great help. I reply specifically because I joined the Myeloma XI trial in May of last year. For some reason I went down the CDT route – I did 4 cycles of 3 weeks each and then went straight into the SC transplant. I am 17 weeks post transplant and about to start my maintenance programme. The good news is that I am pretty much back to normal ( as predicted by my medical team). If I can do this anybody can! If you want to know anything about my treatment I would be happy to help out so please ask away.

Good luck, there is definitely light at the end of the tunnel and so much to look forward to. I live with optimism and have today booked flights to Scotland to climb Ben Nevis.

Take care and keep strong – you will get through this.

Regards,

Tim

[VickiParticipant]

Hello Lesley,

My partner Colin is on the myeloma x1 trial. He took revlimid, dexamethasone and cyclophosmahide for 7 cycles and that took him into remission. He then had a stem cell transplant in early November 2012 and is recovering. Over those 7 cycles it was hard sometimes and Colin felt unwell sometimes, with a few infections inter dispersed. I would say that we were frightened at the start and although there were some hard times feeling overwhelmed with the number and frequency of tablets it paid dividends. The hospital staff are skilled and when it came to infections they treated them skilfully.

We found that writing down the tablets and frequency on a spreadsheet or in a book helped. That was my job to make sure that Colin took all his tablets at the right time….it made me feel good that I was helping too. I can't say what the pros and cons of the other treatments are because I don't know. We were recommended this regime and went with it.

It is a hard slog but worth it and surprisingly you do get used to it somewhat. I would say it takes some time to get used to this situation and even after Colin's sct, although touchwood he is doing well, it is hard to readjust. But go for it 🙂 please ask any questions you need to, if we can help we will

Vicki and Colin x

[charisma4Participant]

Hi Helen,

Oh how I echo your sentiments! I signed the papers on Monday and spent the rest of the day mourning my 'normal life'I started treatment today -revlimid,but didn't sleep last night worrying about the horrible chemicals I was about to put into my body.I don't usually go in for self pity,I am a no nonsense sort of person generally.

So here I am on day one of treatment and the rest of my life,and like you feeling very angry,which maybe is a good thing, as it makes me determined to fight.I hope I don't begin to feel too ill, as I have a daughter who is bipolar and two grandchildren living with me, and the children are now teenagers who don't miss a trick.I really want to keep this from them as long as possible, as they have already witnessed illness first hand with their mum.

Thank you for your information, and thank you for 'lending an ear'

I am already finding this site so helpful, and full of such kind people.

To borrow Tom's phrase…..onwards and upwards !

My best wishes,
Lesleyx

[Author]

Posts