Many thanks Tom. I really appreciate that.

All the best to you.

Scott

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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

No, Prof Schey is not based at Nottingham. He is at both Kings College and London Bridge hospitals.

I didn't do too well either on Velcade and dex. Hopefully things will pick up for you both. It seems to be pot luck on how you cope with that medication.

Keep fighting.

Scott

Hello Liz

I'm just back from Spain myself. Fortunately all went well. Sorry to hear your bad news. Do you see prfof Schey. He certainly knows his way round this disease so if it's him, you are in good hands.

I'm on Revlimid as maintenance and have been for the past year. Looks like I could have another couple of years remission with that if…[Read more]

You are absolutely right Dai. The Euros, Olympics and days like yesterday take your mind off MM for a while which is a great thing.

Whoever is appointed manager at Chelsea has a tough year to follow especially as the team will have to be rebuilt soon, as you mentioned.

All the best

Scott

Good luck Keith. Hope you can make your holiday. I know how important that can be as we are off to Spain on Monday and it would be a disaster if the myeloma got in the way.

Keep fighting.

Scott

Hi Jo

Great to hear that you are enjoying yourself. We are off to Spain on Monday. Can't wait. I'm on EPO self injections as well but I have to do it twice a week. It's not too bad once you get used to it. It's certainly a lot better than having to spend a day once a month having blood dripping into you at the hospital. What a palaver though…[Read more]