[lynericParticipant]

Thank you for your replies. I forgot to mention I have been prescribe Loperamide to help control my bowel problem. This helps but can’t stop the problem. Ellen I have already been seen by the gastro clinic & had a colonoscopy. The only problems the found were diverticulitus & IBS. I was told both these conditions were slight. But I will ask about Bile Acid Malabsorption.
Still no replies to my dizzy spells in the middle of my free week off Revlamid.

[lynericParticipant]

I have started my maintenance, on the Myeloma X1 trial, this week. So it's to early to say what will happen. I am only taking Revlimid. When I took this as part of my initial treatment I ended up with DVT in my right leg. After my SCT I was weaned of Clexane & put on Warferin, so far everything is ok. Since my SCT in august I have continued to improve to the point I feel almost normal! This xmas & new year were great, as last year I was in so much pain before my diagnosis in January. Everyone is different & we don't know how these drugs will affect individuals. This site helps us find out what may or may not happen. Good luck to everyone whether on the trial or not.
Eric

[lynericParticipant]

Hi everyone. I'm just over 3mths post SCT & don't have anymore itching. When I did I was told by a friend, whose daughter had similar symtems, to try Pure Aloe Vera gel. This did the trick, calming the itching until it stopped altogether. Got mine from Holland & Barrett, on offer, it's normally between £6 – £7. Hope this helps.

[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

[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

[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

[Author]

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