[bandityogaParticipant]

Hi all

Ian started on Velcade once a week and 20mg of dex for 2 days each week for 6 cycles. Hopefully he will get remission and because he is now walking and fitter, consultants are talking about SCT but we will have to wait and see.

Treatments can now give a good remission without SCT. Will consider when time comes.

Maureen x

[dickbParticipant]

Hi Maureen,

Sounds like Ian is on the same dose I was on. I started with Velcade in June and started having pain in my feet around August I think. It wasn’t until October it became really bad but virtually cleared up at Christmas. I finished with the Velcade end of October. As for the Dexy, I never managed a proper nights sleep. From August they introduced Cyclophosphomide as well. Unfortunately the SCT doesn’t seem to have worked for me – yet. I had my SCT on 15th January, My IGG was at 32 and has only dropped to 23, this figure has been confirmed after the last two blood tests. They want to do a tandem SCT but I’m not convinced so I am going for a second opinion. My current preference is for Revlimid but I did have raised liver enzymes after 1 course of PAD and they are concerned that will happen again. Anyway, as you say, treatments can give good remission without SCT. Good luck with the Velcade.

[eveParticipant]

Hi Maureen

This time last year,I bet you thought you would never get,were you are now????

How is the Velcade going??? Keep his feet warm,and give his legs and feet a good massage,there legs get very stiff and you can actually feel the tension relaxing in the calfs,so worth it.

Glad you had a nice break in the lakes and also met Andy and Steph,Love Eve

[bandityogaParticipant]

Dick

Sorry to hear your SCT has not been successful YET. There have been a few people on this forum with the same problem only to discover that after a few months they got remission so I hope it will work for you.

Will have to keep an eye on Ian’s hands and feet as he has tingling already.

Eve

I didn’t ever think we would get to this stage a year ago.

Ian is coping well with velcade so far but it is early days. A bit hyper on the dex but managed to sleep last night which is better than me. He keeps a small light on and I find it difficult to get back to sleep when I have to get up to the loo through the night. I will have to get an eye mask.

No problem with his legs yet but will massage.

How are you coping and is Slims treatment working?

Love Maureen x

[eveParticipant]

Hi Dick

I am sorry to hear your SCT did not work, Helen R and you have both slipped it into someone else,s post!!!!!,I did the same when it happened to Slim,why do we do that??????

I think it,s because we do not want a lot of post saying ( I am sorry ) it’s bad enough going through SCT with nothing to show oft it !!!!,Slim looked on it as 6 months taken out of his life.

You are young and have a young daughter,may it suggest you get in touch with Jet,she has had back to back SCT,also there is a separate forum on it,she can tell you about it.She has a blog plus can be contacted on UK Myeloma Support. Well worth doing some research.Love Eve

[dickbParticipant]

Hi Eve, I don’t regret going through SCT, Slim may have called it character building in the past, it’s just that reading the research and knowing how long it takes to have any form of recovery afterwards makes a tandem SCT seem a bit costly in emotional terms. On top of that, the chances of a succesful tandem are minimal with IGG in the 20’s

I will take up your suggestion of contacting Jet. We are in a bit of a quandery, feels like Hobson’s choice, damned if you do damned if you don’t but hey ho, that’s life.

Sorry Maureen, I promise to start a new thread and not hijack yours again.

Richard

[CarolsymonsParticipant]

Hi Dick

I was wondering why they sent you to SCT with a paraprotein of 32? Did you have Velcade for first line of treatment or CDT?

Carol

[eveParticipant]

Hi Dick

You take your chances!!! Slim was unfortunate ,as I have said before Slim is one of the 15 percent who is high risk,good results,but it comes back quickly,you seem to be in the same predicament as Andy,!! Cannot get your PP down!!!. Hindsight would be wonderful??

You have a lot going for you Dick, young,fit family plus time,so I think it’s worth communicating with Jet and the support group for tandem SCT,I hope you get some knowledge out of it.
Keep positive,the first time you come out of remission is the worst,all your hopes are built round a SCT,any bad news after that is expected in some ways,you still have a chance of going up on this roller coaster!!! Stay positive.Love Eve

[dickbParticipant]

Morning Carol,

I actually started off with PAD but that overstressed the liver so much I had a further 2-3 weeks in hospital. They were worried about the MM so the decided to try low doses of Revlimid even though the liver enzymes were very high. This was abandoned after two weeks because of the concerns over the liver. Once that had settled they put me on Velcade. The Velcade only dropped the IgG from I believe 52 to 32. They belived the Velcade wouldn’t achieve anymore hence the SCT. I still would have gone for it because I am rapidly running out of options. There was talk at one time of putting me on a trial but that didn’t happen because they believed my German wasn’t good enough.

Morning Eve,

I don’t feel very fit at the moment, we’ve just moved house, and I’ve probably done a little too much, I have a return of shoulder pain for the last few days. My consultant will throw the book at me if she knew. As for our daughter, she’s seven with the attitude of a 16 year old. Don’t know what’s going to kill me first -MM or her!

[CarolsymonsParticipant]

Hi Dick

Don’t lose hope yet from the transplant. I have read of people on this forum whose pp continued to drop many months after the transplant. As Eve says you have youth and fitness on your side. Remember you are only a few months post transplant so REST! I have an offer on this London flat so am planning my escape to Australia, but everything seems to still be such an effort, even though I am 2 months post transplant now. People say I look well and supposedly the cancer is gone for now, but I am still so tired and feel “spaced out” most of the time. I have to return to work next week (I can’t believe it is 1 year since my collarbone disintegrated) so I need to get myself together before then. Luckily I only have to do 1 hour a day for the first week and we have 2 weeks Easter holidays from the 4 April….joys of working in a school!

Carol

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