[pottermanParticipant]

Hi there. Just wondered if anyone has had initial treatment of VCD and then just been off all treatment apart from Oxycontin for pain and a monthly Zometa infusion. My partner has done this and had a complete response and remission since last November. Are there any others outthere who have done the same or very similar.

[andygParticipant]

Hi Potterman.

Looks like your post has been overlooked which is unusual.

I personally haven’t been on VCD though I’ve had several others ie. CDT, PAD, DTpace, Revilimid and Pomalidomide which is my latest treatment. Only Revilimid and Pomalidomide have had a meaningful response for me and have managed to keep my myeloma stable. So I’ve been on treatment, drugs, since diagnosis for over four years now. I even had to stop Zometa due to ONJ (osteonacrosis of the jaw) so I’m pretty much the opposite to your partner.

You don’t give any details about your partner so it’s hard to offer any advice so that maybe why you’ve had no replies. I know my circumstances are entirely different but I just wanted you to know posts are read and questions usually answered.

I hope everything continues to go well for your partner.

Every day is a gift.

Andy

[pottermanParticipant]

Hi Andy. My partner was diagnosed in April 2014 with MM she was then 56. She had eight months of VCD and has had a complete response and has been in remission One year ago today 5th November since finishing her treatment.  Just wondered what the next line of treatment would be when needed now that Rev and Pom have been taken away from people who need these drugs. Thanks for your earlier reply.

[andygParticipant]

Good morning. I assume your partner started on Velcade due to kidney problems because the usual first treatment is CDT. I wouldn’t worry too much about the next treatment options as there is several available. Either standard treatments or newer drugs available through trials. Revilimid hasn’t been completely removed from the CDF and is available at second relapse. There are new drugs coming along all the time and hopefully some will get approval in the next few years.

SCT also seems an option to me but all this needs to be discussed with the consultant if and when a relapse occurs which hopefully is a long time away.

Please don’t get hung up on what treatment is next as it will spoil what you have now. Enjoy what you have now and if your partner relapses your consultant will guide you to what’s next as treatments change and improve all the time and by that time both Revilimid and Pomalidomide may a standard treatment.

Good luck to you both and I hope your partners remission continues for a long time to come.

Every day is a gift.

Andy

[pottermanParticipant]

Hi Andy. Yes she started with a bad back which went on for six months before we finally got to see a specialist and within eight hours we were told to go to A&E with an overnight  bag. Following some tests and xrays etc she was admitted to the Renal unit with kidney failure. They had dropped to sixteen per cent. She was eventually moved to the cNcer centre at Royal Stoke and was in for six weeks. She has lost amost  6inches in height and has bone involvement including her back. She had to learn to walk again and had eight cycles of VCD. She had a complete response and was in Remission officially from November 2014.  We have been on three monthly reviews and go for our next one this Friday 18th December. Keeping our fingers crossed for good news.

[andygParticipant]

Hiya.

Six inches is a lot of height to lose. I remember getting my height measured before one of the many scans I’ve had and I was five inches off my pre myeloma height though it was later in the day and I do get shorter as the day goes on.

Has your partners kidneys recovered? I had an ultra sound on my bladder last week and they also did my kidneys whilst they were at it and I didn’t like the way they hovered over one of them longer than the other. Hopefully it won’t be anything.

It’s great that your partner is still in remission and I hope that stays the same for a long time to come. Good luck for Friday.

Every day is a gift.

Andy

[pottermanParticipant]

Hi Andy. Yes her kidneys have recovered well, in June they were upto 87 per cent, however when we went for the September review they had dropped to 63 per cent but the consultant said that it was because she was not drinking the recommended 2 – 3 litres  of liquids a day.  Apart from that everything else was in range and they said they were very pleased. Thanks for replying before.

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