[scott9Participant]

Ah – Newcastle. That explains the problems with the transport. It has been raining hard around London as well but we haven't had flooding or train disruptions – well, no more than usual!

Good luck with your fight.

Scott

[scott9Participant]

Hi Jo

I'm doing fine on the Bendamustine. Low energy and I get out of breath quickly but I think thats more to do with my dodgy kidneys. Hope you continue to do well on the velcade. It nearly killed me – I was hugely sick, had the trots, lost loads of weight, could barely walk or talk, fainted a few times, felt the cold badly, got peripheral neuropathy in feet and hands etc etc. Still suffering from the peripheral neurpoathy but it hasn't gotten any worse thank goodness.
The Bendamustine apparently is very toxic so I won't be having too many sessions. I just hope it works before the toxicity becomes too much for me.

All the very best

Scott

[scott9Participant]

Hi Andy,

Do you see Prof Schey?

He has been looking after me for the past two years. I haven't had the SCT due to dodgy kidneys. Don't worry as he has been able to keep me going without it. He has put me on a new chemo regime recently as the cancer readings were going up again, but revlamid maintenance lasted for a year. I'm on Bendamustine/Dex/Thalidomide now. Due for my fourth bash of Bendamustine on Monday. I'll let you know if it is working. Last light chain reading was a bit up so hopefully this time it will be down again.

Stay strong

Scott

[scott9Participant]

Hi Jo

I hope you are coping OK with the new drug regime. I didn't do very well with velcade so I can only hope you have more luck. Keep fighting and keep going. You are an inspiration for me and probably a lot of others as well.

Good luck

Scott

[scott9Participant]

Hi Dai

I've just logged on again. To answer your question, I'm having no problems at all with the Bendamustine. I don't like the steroids, but who does. The dex is only once a week so I can cope with it. Hopefully the Bendamustine etc will get the light chain readings back down again, but then what? I don't fancy the Stem cell transplant option as my kidneys are badly impaired so there is a higher mortality risk. However I may have no choice in the matter. It could be that or nothing and nothing means the cancer will be back again. Living with this is no fun, is it.

Keep fighting all.

Scott

[scott9Participant]

Hi Dai

Glad to hear you are on the mend. I'm on Bendamustine, thalidomide and dex. I'm due my third bash of Bendamustine on Monday when I will find out if it is reducing the light chain readings. If not then maybe there is something else they can try. It was really tragic news about Paul I keep thinking about him. He was only in his forties and it just started as a high temperature. It highlights just how fragile life is for those of us with this disease.

Keep fighting old chum.

Scott

[scott9Participant]

Hi Andy,

Well done to you. Coincidentally I have just come to my anniversary as well. Its now two years for me. As you say life is a roller coaster. I'm back on chemo treatment as the light chain readings had headed north again. Hopefully the new treatment will sort it out again. Thank goodness there are various options to try these days.

Stay strong.

Scott

[scott9Participant]

Dear Gill

I will second what Paul has said. Sincere condolences and we are all here for you. This blasted disease really bites hard and is totally random. You just have to live with it and prepare for the inevitable as best as you can. I hope you find the strength to keep going for your family.

All the very best wishes.

Scott

[scott9Participant]

Hi Keith

Profound sympathy. I was just like you a while ago when I was on Velcade Dex etc. I blamed the Velcade but maybe it was the Dex. I will know soon enough as I am now on Bendamustine, Dex and Thalidomide. It will be interesting to see what happens to me next.

I really hope you recover your weight and well being soonest. Quality of life is of paramount importance for sure. Like you I don't want to go through what we have again. Loss of weight etc meant I had zero strength. I couldn't even walk up the stairs. I had to crawl up on my hands and knees. I don't want to get like that again.

Good luck with your fight.

Scott

[scott9Participant]

Hi Keith

Stick with it. I know it will pass for you. I was pretty much the same when I was on Velcade. My weight dropped to less than 9 stone. I was skin and bones. I thought I was dying but came through in the end.

This is a tough disease to live with but there can still be good times.

Keep fighting.

Scott

[scott9Participant]

Hi David

I've just noticed your news. My goodness, if it's not one thing, eh? I play golf with a couple of chaps who have had prostate cancer for ages. I believe ultrasound is supposed to be the latest great treatment or are you too far gone for that too?

Good luck.

Scott

[scott9Participant]

That is great news. Many thanks for the information Tina. Hopefully I have another year to go then before shuffling off this mortal coil. All we can do is keep fighting.

All the best.

Scott

[scott9Participant]

Hi Keith, Vicki and Colin.

We all live in hope when it comes to golf. I only took it up a few years ago when I couldn't cope with squash any longer. With MM we all have to be careful of fractures indeed. I had to stop when I had a fracture in my spine but when my ribs were bad I kept at it. My golf partners are pretty accommodating. It was too painful for me to take bunker shots so they let me take the shot just behind it. I get sick fairly regularly on the way round but I'm OK afterwards. I make sure I drive the buggy these days so at least I can stop to chunder up. I used to puke out the side while it was still trundling along the fairway with someone else driving not realizing I was being sick. The sickness is due to my poor kidney function mainly. Hopefully the new drug regime won't hit me too hard.

All the best

Scott

[scott9Participant]

Hi Mavis and Jo

Many thanks for your posts. Thank goodness there are so many new drugs coming along for myeloma. Mind you, I believe bendamustine is a fairly old one originally from East Germany so it seems to be pretty well tested. Hopefully it will be OK for me. I guess all of us myeloma sufferers always hope for the best and try to prepare ourselves for the worst.

I'll let you know how it goes. With luck I may still be able to hit a golf ball or two!

Cheers

Scott

[scott9Participant]

Hi Bill

Revlamid has been great for me. I started on velcade and that nearly killed me so my specialist switched me to Revlamid and that did the trick. I then went on it as maintenance but unfortunately it has now ceased to be effective so I am about to start a new cocktail of drugs. No great secret re avoiding infection, just try to stay away from crowds. Not easy though I know.

Good luck.

Scott

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