[EttaParticipant]

Hi Jim and welcome,

Sorry about the delay, been a bit hectic this past couple of weeks!

My wife got diagnosed late August and she too is on the XI trial on CDT up in Preston. The levels are coming down every time we get checked (just starting the third cycle this week), so that's good. As everyone has said its pretty individual as to how people react so try and keep your chin up and do what feels right for yourself. Don't try to overdo things and drink plenty of fluids to protect your kidneys, something Etta hates but I keep badgering her :-).

Good luck with things.
Craig

[Gill20Participant]

Hi Jim,

I agree it is such a shock to find yourself with this dreadful disease but there is hope. I too am recieving treatment at The Christie and was selected for CTD on th X1 trial. The main thing that affected me was the steroids, at the end of my fourth cycle I could not even walk upstairs. My face was so bloated I looked like Moonface out of the Faraway Tree lol. Fortunately the fourth cycle was my last and I have just had my STC harvest. I wish you luck

Gill

[GcarerParticipant]

Hi Jim,
My husband is on the trial, he is into his third cycle, I honestly thought his treatment would of been monitored a lot better, he only goes in every month for bloods and drugs, the actual doctor who you are seen by only comes in at the end to have a brief chat, my husband is beginning to feel like a number not a person.
We were told at the beginning he would be going in for tests quite frequently, to be honest I don't find monthly frequent.
Also we ask questions and I don't feel we ever get a satisfactory answer, we always feel we are mithering, and have a limited appointment time.
He was unable to get in last week, they tried every way they could to more or less insist he goes in(we do know how important it is he doesn't miss the start of the next cycle)but he was very poorly and whichever way he was taken in it was far too much for him. He did at that point say he wanted to come off the trial, and that he didn't feel happy with the treatment.
After a chat with him he is now back on it, we will see how things go next week at the clinic.
Gail

[eveParticipant]

Hi Gail
I think the 3 cycle was the hardest for Slim,mainly because he was ill and we just thought it was the effect of the chemo,because he did not have a temperature, it was not picked up by our doctor or A&E,he had pneumonia and the steroids masked the infection.
So this is were you have to be firm if you think he is ill make sure they listen to you,!!!!!
It is a big learning curve,but things will get better,if you are not happy with the treatment,speak up,tell them your worries,they will take it on board.I make sure I get all test result to compare.
Hope thing go well next week.Eve

[konrad01Participant]

Dear All,

Thanks for all your postings.

I'm starting on XI on 15 June at Southampton General after my MRI scan and Bone Marrow data indicated that treatment was needed. It's taken 18 months to get to this point.

Just waiting to find out which pathway I will be starting on. Will try and post my experiences.

A good weekend to all,

John

[lynericParticipant]

Hi Adam. I was diagnosed in Jan 2012. Went on the RCD trial like yourself. After 5 cycles was refered for SCT. Had this end of Aug. All went well and I'm in remission & now feeling very good. Now the dilemma is do I stay on the trial. My wife & I are worried that I may have side effects that make me feel worse as I am feeling so good at the moment, with just a bit of fatigue & breathlessness. Any advice, negative & positive, would help a lot.

Eric

[eveParticipant]

HI Eric
Hello and welcome.You must be wondering why you have not had any reply,s???

Well if i may explain,because you went into an old thread,although it shows a posting it has come on screen in the middle of an old posting.The best thing to do is ,log in go to the first section,which you did,then scroll down to start discussion ,then you can put you own information with heading,and people will see it and realise its a new posting." hope this helps"

Your question "do I stay on the trials" after remission,well Eric
I can only tell you about my husband on the trials.,he got CDT on trial,then went on Velcade then remission,then SCT.last part of trials was maintenance,he got randomised for No maintenance,but they still want to keep a close eye on his bloods,so he goes to hospital every 2 months.
My advice is stay on trials,if treatment does not suit you,then come off trials,that way you leave your choices open.Eve

[lynericParticipant]

Thanks Eve, trust me to do it wrong.:'-( My wife & I are just a bit worried, because of the side effects, that I may feel worse than I do at present. But I understand if I stay on the trial I will have access to the latest drugs & be monitored closely. Eric

[tomParticipant]

Hi Eric (am pleased that OUR Eve Misses nowt Lol)
And am with Eve, stick with the trials I am on nowt at the moment and still in remission 😀 and mine was just CDT then SCT all in 2009.

Tom "Onwards and Upwards" x

[AliParticipant]

Hi Eric

Im Alison, its my Mum with MM. Shes having the same sort of worries as you at the moment. She too is on Myeloma 11 trial. Having completed 6 cycles of RCD and SCT Aug 2nd this year. She is just starting to feel "normal" again, or as close to it as she can:-) Shes now been randomised to Revlimid and Vorinostat.

Whilst on RCD she developed 2 clots and had to inject Clexane to prevent more. Both Revlimid and Vorinostat are known to cause clots so she now has to take Warfarin to be able to continue with the trial. Shes apprehensive about the Vorinostat, as again we go back to the fear of the unknown. She knows she can cope with the Revlimid, especially as this time it will be a lower dosage. I also know that she would have kind of felt cheated had she have been randomised to no maintenance, and (once she gets her head around it) will just get on with it. Going to see the consultant tomorrow, find out more hopefully.

Have you actually been randomised yet? How are you recovering after your SCT?

Ali x

[AngieJayneParticipant]

Edited as posted in the wrong place :-/

[eveParticipant]

Hi Ali

Must admit I felt cheated for Slim,I had done a lot of research and 33% chance of no treatment and 66% of treatment,Slim got no treatment,to be truthful felt deprived,and I am just a carer lol.

Saying that have got my head around it,now looking forward to 6 weeks free,then 2 weeks of test and consultant,so there are some good points to no treatment.

We are off to NZ then home for test and consultant then off to France,I intend to cram everything I can into what ever time we have.Eve

[lynericParticipant]

Hi Alison. Not been randomised yet, back at hospital in 3wks for Zometa. Will make a decision then. I'm good after SCT, that's why I'm concerned about side effects making me feel worse. But I suppose any problems I can always drop out of trial. I'm also on Warfarin because of a clot I developed whist on RCD.

Hi Eve. About your trips abroad. How do you go on about insurance?
We cancelled this year but have booked next year. Just insurance to sort, we know it will be more expensive.

Good everyone is coping alright with there treatment.
Eric

[CharlotteParticipant]

I wish this site had a "like" button like the one on Facebook!
I just wanted to say that those were very good posts, Dai and Paul (to which I am coming about a year late…), especially re. managing other people's reactions, keeping a note of side-effects, and staying positive.
Charlotte

[Author]

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