Hi Dai

How did you get on yesterday? I didn't quite achieve complete response. However I did get to a "very good partial response" as the specialist put it. One of the light chain readings is at 40 while the normal range goes up to 29. However considering that when I started treatment that light chain reading was at 3,500 it's not too…[Read more]

Good luck for tomorrow Dai. I'm also due to get news tomorrow as I have just finished my course. You are a brave man to persevere with Velcade. I had to give up on that after 3 months as I was too I'll to continue with it. I probably won't go for SCT if I get a choice. I think maintenance therapy sounds better for me. I do hope I get that option.…[Read more]

Hi Jo

Many thanks for the message. Do you know, I first considered declining the SCT when I read one of your notes some time ago. I noticed that you had kidney problems too. I didn't realize that you got so close to dialysis. I thought my creatinine reading at 359 would be hard to beat but you certainly did that. It is hugely encouraging to me…[Read more]

Funnily enough I've promised my wife she can have a few more years nagging me too! I certainly don't want to sit and suffer. No point keeping going without some sort of quality. I'll see what the consultant has to say about that next week.

You are a year ahead of me as I was diagnosed last Sept. That's the great thing about this forum, you…[Read more]

Hi Shirley

I've just finished taking my last batch of steroids and chemo pills today. I'm due to see my consultant next Monday to decide what to do next. My options seem to be the usual SCT, but my creatinine reading is 359 which equates to about 15% kidney function. This makes SCT more risky and at the end of the day there is no guarantee it…[Read more]

Hi Dai

You have my 100% sympathy. I know exactly what you are going through. There is no easy answer unless your consultant is prepared to switch you to another new novel agent. As someone told me during my time on Velcade…no pain, no gain. It didn't do much for me but there it is anyway.

My goodness how MM changes your life!

Good…[Read more]

I was on Velcade for about three months. I just had to go to the hospital once a month. They stuck a line in a vein each time and put a saline solution in first then the velcade which took about ten seconds to inject. I can't believe you need a permanent line for it.

However, it nearly killed me. I lost nearly 4 stone, couldn't eat, kept…[Read more]

Just to add that Dr Schey also works at the London Bridge Hospital. He covers private patients there in case that is the way you want to go. I fully agree with Mari – he certainly knows what he is doing.

Good luck. It is a real shock to find that you have this disease, but it is treatable, although cannot be cured, as yet.

Scott

Hi Angelina,

Many thanks for the response. Its all relative. I don't think my experience was much worse than a lot of people with myeloma and its been a lot better than a friend who has mouth cancer. I just gritted my teeth and got on with it.

Things got so much better for me once I had switched to lenalidomide (or Revlamid if you prefer…[Read more]

Hi

This is my first contribution to the forum, but I have read the various topics with interest and it has helped me a lot. I started my treatment last October with a combination of Velcade and other stuff. It nearly killed me. I lost loads of weight and I suffered really badly too with the runs. Every hour or so, 24 hours a day. By…[Read more]