[scott9Participant]

Thanks Rosie. You are lucky (well it's all relative) as I think I will have to have chemo twice a week, three weeks on and one week off. Lots of trips to the hospital coming up for me.

Keep fighting.

Scott

[scott9Participant]

Hi Rosie

Thanks ever so much for the information. Do you have any ode how long your course will be? My pps aren't a problem. It is the light chains that are doing me in. I coped OK last time round with dex I had that with velcade and the velcade nearly killed me. This is such an individual disease plus the treatment affects everyone differently. I will post my reaction to this lot of drugs as it may be of interest to others coming along the same path.

All the best

Scott

[scott9Participant]

Many thanks Tom. I really appreciate that.

All the best to you.

Scott

[scott9Participant]

Hi Jo

I've been on EPO for a while now. I started with three injections a week then it was reduced to two per week and now I'm just on one per week. It's a million times better than having to go to hospital all the time for blood transfusions. I was a bit worried that I would find it difficult but it's actually pretty easy. I bang the needle into my leg as I didn't fancy it going into my stomach. I give the leg a bit of a slap, squeeze it a bit, stick it in and slowly press the plunger. If I can do it so can you, no bother.

Good luck.

Scott

[scott9Participant]

Sorry to hear of your ongoing sufferings Dai. Life sure is not easy. If its any consolation, I have a terrible cold and have not had the strength to get out of bed for a couple of days. I'm up now, but as weak as a kitten.

Lets hope things pick up for us.

Scott

[scott9Participant]

Hi Jo

Yep, Spain was very relaxing and not too hot. Wouldn't want to be there now though. Must be about 100 degrees every day.

I'm still trying to play golf. Great things buggies and electric trolleys. Just hop off hit the ball and hop on again. I'm not very good but it gets me out which is the main thing. I'm like you, praying that I don't deteriorate to need dialysis for a while yet. What with everything else, I could do without that! Plus it would be a real hassle arranging to go anywhere for a holiday. At the moment I just have to worry about pills and injection supply and slotting it in between hospital visits.

Keep well you too

Scott

[scott9Participant]

Hi Dee,

Like Jo, my kidneys are working at about 20%. I'm on dialysis watch at the hospital in case they drop to 10%. I've opted for the dialysys you can do yourself at home. Basically you plug yourself into a machine when you go to bed and unplug yourself in the morning. That seems so much easier than the hassle of going to the hospital all the time. My myeloma is kind of under control – readings going up a bit, but so far so good.

All the best

Scott

[scott9Participant]

Dai,

I think this web site is brilliant. It is such a comfort to know that you are not on your own, fighting this thing. I was pretty worried about the readings going up, but not so worried now that I see you are in the same boat as me. I'm not getting dex as I am on just maintenance therapy which is Revlimid (10mg) three times a week. My specialist said that so long as I don't start to feel a lot worse or my other blood results deteriorate then I should just carry on. I'm not too bothered whether the readings are 50 or 250 so long as nothing bad happens.

Lets hope we can both (and everyone else) carry on till this new drug reaches the UK.

All the best

Scott

[scott9Participant]

Hi Dai

Many thanks for posting that. Let's hope it gets to the UK before too long. This might sort me out again as I had no success with Velcade. I'm on Revlimid at the moment but the light chain readings are creeping up. You are having the same problem I believe. My light chains have gone up from 127 to 152 but it seems this is no great cause for concern just yet. What's happening with your readings?

All the best

Scott

[scott9Participant]

Hi Stephen,

I hope the SCT gives you a good long remission period. What a hassle the procedure seems to be. As my kidneys are wrecked, I didn't have that and to be honest I'm quite glad as its not exactly fun.

Keep fighting.

Scott

[scott9Participant]

hi Keith

I had the same problem when I was on Velcade. I lost so much weight the doc told me I was too ill to continue that treatment. He switched me to Revlamid. Maybe they can switch you to something else if its too bad for you.

Good luck. Keep fighting.

Scott

[scott9Participant]

Hello Dai

I haven't looked at this site for a while. My wife and I went to Minehead last week and I'm only just getting over the tiredness. Pity about this weather!

So sorry to read about your trials and tribulations. I don't even have a thermometer so have no idea about my temperature – probably just as well or I would worry about that too!

Hope you continue to improve.

Keep fighting.

Scott

[scott9Participant]

Hi Keith

Good luck with the treatment. Hopefully the effects won't be too bad.

Dai: Poor old you as you have been through the wringer with this disease. I really hope your light chains settle down and you can get on with your life as best as possible.

I'm due to see my professor on 23 July to find out if my readings are a blip or whether I have to have more heavy duty chemo. Life ain't easy for us lot is it!!!!!

Keep strong.

Scott

[scott9Participant]

Hi Paul

I've only just noticed your discussion thread as I was in Spain when it started. Deepest sympathies from me too. It looks like I'll be following you, Andy and a few others who have relapsed. My light chain readings have been going up the
last couple of months. My professor wants to see what my blood results are next month and decide if it's a blip or the cancer is back. It sounds like there are still one or two options that may or may not work. In the meantime I'll keep me fingers crossed it's only a blip, but I can't help thinking it's going to be bad news.

We just have to keep fighting.

All the best to you.

Scott

[scott9Participant]

It really amazes me how many different ways there are to deal with a medical situation. You mentioned you will have injections to prevent clots. My medication for this is an aspirin a day! I think I prefer the aspirin method.

Anyway good luck with the treatment. I'm just on Revlamid -10mg, 3 times a week so not suffering much with any side effects thank goodness.

Keep fighting.

Scott

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