[scott9Participant]

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 bad.

I had the choice yesterday of SCT or maintenance therapy. As my kidneys are knackered, I chickened out of the SCT and have gone for maintenance therapy. I really don't like the sound of SCT and all that entails. I will take my chances with maintenance therapy and see what happens next.

I hope all is good with you.

All the best

Scott

[scott9Participant]

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.
I think if I get to CR I'll take the wife for a cruise to celebrate. Never been on one before but lots of people seem to enjoy them.
All the best
Scott

[scott9Participant]

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 to read that your kidneys have improved. There is hope for me on that score too then.

I will definitely have a look at what the American doctor has to say re SCT. My consultant is Dr Schey. He mentioned last week that there will be more results within the next 18 months re a comparison between remission periods between SCT and maintenance therapy. I will be happy to go along the maintenance therapy route and see how long that gives me.

I will post what happens next week as that may prove useful to others.

All the best

Scott

[scott9Participant]

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 can learn from other peoples experiences and maybe I can add something too.

There seems to be lots of new drugs etc in the trial stages so maybe they will keep us going. Let's hope so.

[scott9Participant]

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 will make a huge difference. I am leaning towards maintenance therapy ongoing but will see what happens next week.

This forum has been really helpful to me in seeing what other people are doing and how they are coping.

I really hope your transplant gives you many more years.

Good luck

Scott

[scott9Participant]

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 luck

Scott

[scott9Participant]

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 getting sick etc. The consultant then switched me to lenalidomide and I'm coming to the end of that six month course. Hopefully he will give me good news when I see him in a couple of weeks. This is such a random disease though it can come back at any time so you just have to accept the situation and be thankful for any extra time you get. That's my view anyway.

Good luck with the Velcade and associated side effects.

Scott

[scott9Participant]

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

[scott9Participant]

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 to use the brand name). I seriously recommend you push hard for that rather than even reduced Velcade. Why is your specialist reluctant to start John on that? It does the same job and has worked so far for me with such less side effects.

All the best

Scott

[scott9Participant]

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 January I was too ill to continue that treatment. My doctor switched me to lenalidomide and the side effects have been minimal since then. I recommend you push for a change. I have two more sessions to go and my readings are heading towards the normal levels now so I'm hopeful they will get there by the time I finish the course.

I'm just left with a kidney function at about 15% currently. I'm praying I will avoid dialysis, but its going to be close. Then at some stage they will sort out my osteoporosis.

Good luck on beating this disease.

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