Hi Susie,

I was on the Myeloma XI trial, the incentive arm, and the RCD brought my pp down from 66 to 2. I then had the SCT in May 2014 which brought my pp down to 1 but I was disappointed that I was not selected for maintenance. In November my pp was up to 8 and relapse was confirmed. I will never know if maintenance would have prolonged…[Read more]

Hi,
I was on the Myeloma XI trial last year, on Revlimid, Cyclophosphamide and Dexamethasone. The dex definitely made me grumpy and caused sleeping problems, I also had nights when I was very hot. I was also out of breath because of low red cell counts, not sure if this was a drug side effect or the Myeloma, but was given injections to help with…[Read more]

Sorry that should say the Myeloma infoline is excellent.

Hi Rosie,

Sorry that it sounds like you have symptoms of Myeloma. I have IgM Myeloma, at diagnosis my total IgM was 100 with a paraprotein level of 52. Any level of paraprotein is abnormal but obviously I am not an expert jut learning from my own experiences. The Myeloma infolding is excellent, there is no reason to be shy in talking to them,…[Read more]

Hi Noel and Ann,
I had an auto transplant in May 2014 which gave me ‘very good partial remission’ but not for long, I had relapsed by November 2014 so I am now on a course of VCD. I have a meeting with the top man in Leeds this week and I think an allo transplant may be discussed as a future possibility as my consultant did mention it as an…[Read more]

Hi,

I have IgM lambda Myeloma, at diagnosis in August 2013 my paraprotein level was 66 which was classed as high. It came down to 1 post SCT in July but I have now relapsed, so restarted treatment in December when it had risen to 8 and a bone marrow biopsy showed an increase from .29% to 38% in the cancer cells.

Linda

Hi Val,

We also have a holiday home in France and although I was told under no circumstances could I ski I could travel to France during my initial treatment of RCD as I only needed to visit hospital every 4 weeks and took tablets the other three weeks. So we managed a few trips during that six months but we went in the car rather than fly,…[Read more]

Tina, I too only had a very short remission post SCT and it does get you down. But, I have started my next course of treatment, 6 to 8 cycles of VCD and this weeks results showed my paraprotein level has dropped slightly, so there is hope. Also I have an appointment with the top man at Leeds next week to talk about future options. I understand…[Read more]

Hi Charlotte,

I have compression fractures at L2 and L4 as well as multiple lytic lesions in several other places, no-one has suggested treatment would ‘mend’ these. The measure they used to check treatment was working before my SCT was the paraprotein level. It came down from 66 to 2, classed as a very good partial response, after 6 cycles of…[Read more]

Vicky,

I am on VCD following first relapse in November. (First treatment had been RCD on the Myeloma XI trial, then SCT in May.) Unfortunately I got an infection during my first cycle so it had to be postponed until I was over the infection. I am now just finishing the second cycle. Have been told they won’t know how well it is working until end…[Read more]

Vicky,

I am on VCD following first relapse in November. (First treatment had been RCD on the Myeloma XI trial, then SCT in May.) Unfortunately I got an infection during my first cycle so it had to be postponed until I was over the infection. I am now just finishing the second cycle. Have been told they won’t know how well it is working until end…[Read more]

Hi Andy,

That is great news and encouraging for the rest of us. If you get the go ahead for the SCT I hope you are one of the lucky ones and get a long period of remission.

Linda

Anne,

Unfortunately my first cycle of VCD was interrupted as I had an unrelated infection but last week I restarted and I am half way through the second cycle. I haven’t quite got used to the ups and downs of the different days yet. The dexamethasone causes sleeping problems but I haven’t had any bad nausea from the cyclophosphamide.
My main…[Read more]

Hi, so sorry you seem to be in a similar situation as myself. I was diagnosed August 2013 and after 6 cycles of RCD on the Myeloma XI trial I had SCT in May. My 100 day check showed a low level bone marrow infiltration and further tests in October/November confirmed relapse, with the bone marrow infiltration rising to 38%. I was offered the MUK5…[Read more]

Hi, Sorry your husband as relapsed. I relapsed in November following a stem cell transplant in May. I also had Revlimid for my initial treatment and have now started Velcade. It seems to be the standard treatment at first relapse but I was also offered the MUK5 trial which compares Velcade with a newer drug which may have fewer side effects. I…[Read more]

Thanks Andy,
You are right SCT does work well for many people but some, like you, don’t get to it and others, like me, get a very short remission. I still think it was worth giving it a go and now I just have to move on to the next stage. I saw the consultant today and was offered either to start velcade (VCD) straight away or to be referred to…[Read more]

Hi Andrea,

I had my cyclophosphamide prime in March, I expected to be in hospital just one night but unfortunately got an infection so had to stay in for three days. I think the infection was unrelated to the cyclophosphamide. I had been warned my hair could fall out and it did but not straight away, it was over two weeks later. The stem cell…[Read more]

Thanks for your responses. I will be seeing the consultant next Thursday and will find out then exactly what the MDT have recommended. I doubt they will suggest, nor would I want, a second SCT as the first only gave me two months partial remission after the 100 day check up/recovery period.

After a couple of months in remission I have just relapsed and my pp level is now just 8 but it looks like they will start treatment very soon, I find out next week. It isn’t just the pp level but if it is increasing and if it is causing other problems that seem to trigger treatment.
If you are seeing Prof Cook at Leeds you are seeing one of the best.

Hi, I think this is a common problem, even water tasted horrible to me so drinking the recommended 2-3 litres a day was difficult. I found Ribena the best, the original version not the sugar free. My taste did return to normal after a few weeks.