[MrsLParticipant]

Hi all,
I was diagnosed in August 2013, had 6 cycles of Revlimid, cyclophosamide and dexamethasone on the Myeloma XI trial and then SCT in May which put me into VGPR, my August check up showed my PP level rising from 1 to 2 and then my October check up showed a jump from 2 to 6, this was a big shock as I am feeling very well, I had just come back from a holiday where I had a 25 mile cycle ride! A bone marrow test has confirmed I have relapsed and so the multi disciplined team will discuss my case this week and decide on the best treatment option.
My consultant has said it is likely to be Velcade, cyclophosamide and dexamethasone. Has anyone any experience of this?
I believe the velcade will be given by injection at hospital, perhaps twice a week, which will mean I won’t be able to get away on holiday which I did a couple of times last year when taking revlimid orally. Anyone know of any other options or trials?

[sue48Participant]

Hi Linda

I was diagnosed in August 2012 I was put on CDT for 6 cycles, I did not go through with the SCT, I had 14months remission, then PP started to rise, I am now on the same as you VCD, my 5th week of first cycle, I have an injection once per week for a month then 2 weeks off. The nurse comes to my house to give me the injection. At the moment I am feeling fine, keeping everything crossed  I see you had not long in remission, saying you had the SCT, one of the reasons why I did not go ahead, because you feel so ill for months and another my age 66, some people are lucky and maybe go years before a relapse.

Hope everything goes ok

Sue48

[dickbParticipant]

Hi there,

Had SCT last January and before that was on VCD. The Velcade gave me neuropothy in my feet. It slowly got worse after the second course but fortunately not in my hands. The Cyclophosphomide didn’t affect me that much I believe but the Dex was the worst. It made me irritable, hyper, unable to sleep. I’m surprised I’m still married. The Velcade was given by injection of 2.6mg on a cycle of day 1, 4, 8 and 11. 20mg Dex on days 1,2,4,5,8,9,11,12. Cyclophosphomide (1800mg) on day 1. After each treatment cycle was a week off then it started again. The Velcade didn’t work that well in reducing my IGG but I had the SCT anyway. Although my IGG is stuck at around 23, it hasn’t got anyworse. Aprt from Zometa and the monthly blood test I am not having any treatment so overall I can’t complain. I hope it goes well for you.

[RobertmauriceParticipant]

Hi Linda
I was dagnosed with myeloma in Sept 2011. I had 4 cycles of RCD ( lenalidomide) on the Myeloma X1 Trial. My paraprotein reduced from 69 to zero. In May 2012 I had a SCT. After a long recovery my remission lasted till October 2013. I was put onto Velcade and Dexamephazone. Each treatment cycle was twice a week (injections) for 2 weeks and one week rest. This treatment began after my paraprotein had gone from xero to 8 in 2 months. After 4 cycles my paraproteinn had returned to zero. I was referred for another SCT. However, after discussion with the consultant at the SCT hospital I turned it down, I think rather against their wishes becauuse I was fit enough. This meant I had to continue with the Velcade for 2 more cycles even though it had already worked. Rond about the 4th cycle I began to suffer peripheral neuropathy (PN). This got so bad that at the end of the 5th cycle they ended the treatment. However, the PN continued to get worse for about another 2 months. My GP put me on Garapentin, which is the standard remedy. I also went to see a homeopath for a natural treatment. Eventually it began to improve and it is now completely gone. My latest blood results (last week) have shown signs of a possible relapse. This has come as no surprise as I was warned it would if I didn’t have that SCT but I don’t regret it. My next appointment is on Christmas Eve. My next treatment will probably be lenalidomide again And I am still eligible for that second SCT!
I think, Linda, that as you are a very fit, active person you will do well whwtever your treatment. Don’t be put off Velcade. It is a very good treatment and you may not get any PN. Eventually a new and similar drug, carfilzomib, should be licensed and that causes fewer side
effects.
Normally they don’t like you to break off your treatment for holidays. You can fit a few days break during the rest week perhaps. I actually got a 2 week break once and a three week break over last Christmas!

[MrsLParticipant]

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.

[andygParticipant]

Hi Linda

I was diagnosed in October 2011. Due to my myeloma not responding to the normal early treatments I’ve never got to SCT. I’ve been through nearly all of the drugs in the myeloma medicine cabinet and I’m currently on Pomalidomide (Imnovid) . Only Revilimid (Lenalidomide) and Pomalidomide have had any significant effect on my myeloma.

The way I look at SCTs is they at worst buy you time for new drugs to come available though I know the recovery from them can be harsh and some only get a short time in remission. At best SCTs can give years of drug free life and lots of new drugs ready when you relapse. Unfortunately there’s no crystal ball to see how you’ll fare after a SCT so it’s a difficult choice to make for some.

I hope they come up with a suitable plan for you on Thursday that your happy with.

Every day is a gift.

Andy xx

[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.

[VickiParticipant]

Hi Linda

My Colin had an SCT in November 2012. Full relapse was June 2014. He started velcade in December 2014 but it’s very obviously not working for him. Whether to have an Sct is always a difficult decision as there is always a chance you will get that long remission. I don’t wpknow whether Colin would go through it again but like you it will ultimately be his call. As Andy says though it does buy you time for the next set of drugs to co e on stream

Best of luck with it

Vicki and Colin x

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