[MrsLParticipant]

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 remission but given the choice I think I would have tried it.

Linda

[MrsLParticipant]

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 this. Keeping a dairy log helped me work out which days/nights would be good or bad and plan accordingly.
Linda

[MrsLParticipant]

Sorry that should say the Myeloma infoline is excellent.

[MrsLParticipant]

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, but if you really feel you can’t then there are some excellent info guides on the site which you can read or down load. Printed copies are likely to be available at your haematologist clinic.

Linda

[MrsLParticipant]

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 option for my type of Myeloma.
It would be a very scary decision and how likely is it to work better than the auto transplant? I will be asking lots of questions and hopefully finding out much more.

Hope your transplant goes well.

Linda

[MrsLParticipant]

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

[MrsLParticipant]

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, partly because of the increased risk of thrombosis and partly for flexibility in getting home quickly if necessary. After my SCT I was told I could travel to Europe at my 100 day check up and we had a 3 week trip 4 months after my SCT.

Unfortunately I have now relapsed and am on a course of VCD which ties me to hospital two weeks out of three, and occasionally on the third as well at the moment. But this week the consultant told me I can fly so we hope to make a short trip soon when I have a week off from hospital trips.

Linda

[MrsLParticipant]

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 there are several so no-one should give up.

Linda

[MrsLParticipant]

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 RCD before my SCT. Unfortunately the SCT only gave me a few months remission and when paraprotein was back up to 8 I started VCD, they say for 6 to 8 cycles, again they are monitoring paraprotein levels, which have started to fall slightly after the second cycle, so fingers crossed.

Linda

[MrsLParticipant]

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 third cycle. The side effects haven’t been too bad, not being able to sleep after the dex is probably the worst, I just try rest during the day to make up. My other big problem is that my IgM lambda Myeloma is causing a very low platelet count, it has been down to 11. A velcade side effect is that it can lower the platelet count so I have had to have one or two transfusions each week to get the count over 30 so I can have the velcade. Hopefully once the VCD starts to work it will stop the Myeloma lowering the platelet count and the transfusions can stop. I believe if you have too many you can build up antibodies against them. Anyone else come across this problem?

Linda

• This reply was modified 9 years, 4 months ago by  MrsL.

[MrsLParticipant]

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

[MrsLParticipant]

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 problem is a very low platelet count, this is being caused by the Myeloma, I think the IgM lambda Myeloma I have is more prone to this, but as the velcade also lowers platelets it is a bit of a catch 22. So at present I am seeing my consultant every week and she prescribes platelet transfusions before each velcade injection. They say it will take 3 cycles before we can see how effective the treatment is being.
I have also been referred to see the top man at Leeds to discuss future treatments, in case this doesn’t work or ready for the next relapse. Nice to know there are other options to discuss.

Hope you’re treatment goes well.
Keeps in touch.
Linda

[MrsLParticipant]

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 trial or to start VCD. I decided to opt for VCD as it can be given at my local hospital and started straight away whereas I would have had to be referred to Leeds for the MUK5 trial. I could have been put on VCD on the MUK5 trial anyway or the newer drug which may have fewer side effects than Velcade. It is a blow to have gone through initial treatment then SCT and then no remission but we have no choice but to get on with the next stage of treatment. I hope it goes well for you, I have read of others reacting well to VCD.

Good luck, Linda

[MrsLParticipant]

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 opted for velcade as I can have that at my local hospital rather than travelling to Leeds for the trial and also I could start the treatment straight away rather than waiting for a referral to Leeds.

[MrsLParticipant]

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 Leeds for the MUK five trial but with it being almost Christmas that might take some time. It was a difficult decision but as the Myeloma seems to be progressing fast I have decided to go with the VCD and will have my first injection on Monday, a blood transfusion for the anaemia on Wednesday and the second injection on Friday. I will be on cycles of two injections a week for two weeks then a week off. Fingers crossed it works and with few side effects.

[Author]

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