Well I’ve taken the first 4 days of melphalan and prednisolone over the weekend. All was quite fine until today. I have no energy, bit breathless when I do anything. If I’m not doing anything I feel ok.

I just wondered if anyone has been on these drugs and how they felt after taking them ?

Best wishes

susie

Thanks Greg. Will do. Take care.

Thank you Gregg

I must say I’m very anxious at the thought of taking such a high dose. With my induction I had Dex 20mgs and found that perfectly tolerable. This just seems somewhat ridiculous.

Many thanks again and best wishes to you

susie

Had my first Velcade today and picked up my drugs. I’m quite shocked at the dose of the prednisolone, its 105mgs. Seems very high to me.
Can anyone please tell me if they too have taken this high dose ?

Best wishes to all

susie

Hello Folks

Had my assessment today and will have my first Velcade tomorrow. I’ll pick up the other drugs at the same time. I’m very, very nervous at the thought of starting all these drugs again. My last lot was RCD and made me feel like death for the first 3 months till my body got used to them. My main worry is the Melphalan but I was told…[Read more]

Hi – he is having an allo transplant then. If you look through the under 50’s section over quite a time period you may find useful insights into the Allo experience/dilemmas faced. I believe if you speak to the helpline they can put you in touch with someone who has gone through the experience – you may like to ask some questions on the under 50’s…[Read more]

Ok and he has myeloma also. Is the transplant an SCT i.e. They will harvest and collect his own stem cells and transplant them back in after the high dose therapy or is it an allo transplant i.e. They are using donor stem cells from a close relative or a stranger where there is a good match – at 35 he would be eligible for an allo I would presume.…[Read more]

Hi, Are you referring to an allo transplant? a full allo or a tandem transplant (of SCT followed by a mini Allo) or are there health complications that make a stem cell transplant riskier? They are all different so perhaps if you give a bit more background info re age/health/ mm status etc someone may have been in a similar position to share their…[Read more]

Just to put right my last post. I had a call from haematology early the next day to say the drug was ready for me to collect. She even kindly rang late that evening to check I had got them.

I am coming to terms with the fact I have to have more treatment. I hope it doesn’t affect me too badly. My spine has been very bad lately and I wonder if its…[Read more]

Thanks for your reply Kevin.

I’ve been really down since tuesday. It’s the melphalan that’s getting me so anxious, and I’ve had episodes of quite severe anxiety. So this morning I rang my gp to try and get some low dose valium, just to calm me down a bit. I’m sure my anxiety is fueled by me living on my own.

Anyway here’s a tale to show the…[Read more]

Hi Sue,

I was on the same trial though I didn’t have a transplant. I was offered maintenance and it took me a few months to decide not to have it. I’ve had 2 1/2 years drug free and feeling very well. I feel it’s allowed my body to fully recover and hopefully when I relapse, the disease may be more sensitive to the drugs. But that’s just my own…[Read more]

Hi Jan

Thanks so much for your reply. I found it somewhat reassuring.

My PP’s were 64 when I first started treatment. I had been monitored for MGUS for about 3 years with a PP of around 30, when suddenly it shot up and I developed excruciating leg pain (sciatic type) from what turned out to be a large sacral plasmacytoma. My bloods have been…[Read more]

Hi Tony and Finnish

That’s interesting. I’m in biochemical relapse, have no symptoms and feel well. My PP’S have risen very slowly since I finished treatment over 2 years ago. They were at 48 some 2 weeks ago and the hospital has been saying all along when they get to 50 they will do imagining and maybe a bone marrow.

I can’t understand them…[Read more]

Hi Lillian, Mm is a very individual disease and no 2 people will react the same. If Vdt hasn’t hit the spot I would think of it as just a different type of drug will suit better for his Mm. I believe dt pace is abit like sending in the heavy artillery so hopefully you will see great improvement and it will do the job for you both and give a long…[Read more]

Hi Michael

Welcome to this site and sorry you’ve had to join us.

I had Revlimid and Dex as part of the Myeloma X1 trial. That was in 2014/15. With the first two cycles I did find it made me feel rather rotten although I’m sure a lot of it was down to anxiety. I knew little about Myeloma and its treatments, or what side effects were common.…[Read more]

Sorry my post was in wrong thread. Apologies.

Hi,

I will be starting Velcade in the coming months. Can anyone tell me whether bloods have to be done before each injection ? Does anyone get their bloods done at their GP surgeries to save a hospital visit.

Thanks and best wishes to all

susie