[scott9Participant]

Being a bloke, I didn't even worry about wrinkles. We can look in the mirror and think we look great no matter what !!!!

Cheers

Scott

[scott9Participant]

Hi Rebecca

I was really worried about the SCT as well due to me poor kidneys. However as I've had this disease for three years now, I was running out of options to keep it under control so I took the chance and went ahead with the SCT. Kings knew about my kidneys and I had a slightly reduced strength chemo infusion. Then they waited a day before the actual transplant and they put me on lots of drips to keep my fluid intake high. I have to go to Kings on Thursday for another blood test so I'll keep you posted re the creatinine readings. With a bit of luck it might stabilise. I really don't want to end up on dialysis on top of everything else!

All the best

Scott

[scott9Participant]

Hi Jo

I got my bloods tested last Monday. Unfortunately the creatinine reading is getting worse. Its up to 335. I'm really really hoping it won't get any higher. I'm back to where I started ie about 20%. What does 385 mean in terms of your kidneys working? Lets hope things get better for you now you are at the end of your treatment.

All the best

Scott

[scott9Participant]

Many thanks for that information. That sounds pretty positive. Another option for us perhaps.

All the best

Scott

[scott9Participant]

Thanks very much for the information Tom. I'll wait for a bit before I start taking it.

All the best

Scott

[scott9Participant]

Thats great news for you Billy. I'm really really happy for you. Its good to see positive news. Hopefully in another couple of months I will be getting some good news as well.

I've had this for three years now. Its certainly no fun living with this disease but its great to see all the new drugs coming through the pipeline. Hopefully we can all keep going a lot longer than a few years ago when there were very few options to treat it.

Keep fighting.

Scott

[scott9Participant]

Yep. I've been home a couple of weeks now and very slowly on the mend. It does indeed take time.

Cheers

Scott

[scott9Participant]

That sounds like pretty good news Tom. Lets hope something comes from this by the time we relapse from our recent stem cell transplants. Hope you are still on the mend. It does take a while as I'm finding out.

Keep fighting.

Scott

[scott9Participant]

Oh yes Jo. I'm on 1800 four times a day as per the last three years. That doesn't help my kidneys though. Its because the kidneys don't produce enough sodium bicarb. so this keeps me going. What level are your kidneys at now?

Thanks loads for the good wishes Phil.

All the best

Scott

[scott9Participant]

Hi Jo: I'm not on any medication for my kidneys. Didn't know there was any. Kings knew about my kidney problem and gave me a slightly reduced dose of the chemo then rested me for a day before the stem cells were transplanted. I was also on loads of drips as I couldn't drink very much. I'll be watching the creatinine readings closely hoping they don't go up too much. From what Rebecca has just said it may stay better or may creep up again. I'll keep trying to drink 3 litres a day.

Tony, Vicki and Colin: Thanks for the comments.

All the best

Scott

[scott9Participant]

Hi Dai,

This was my first SCT. I didn't have it first time round as I was too worried about my kidneys. As I was running out of options I went for it this time. I finally got out of hospital on Friday afternoon. I'm feeling very weak and like everyone else need lots of sleep.

Jo/Rebecca: My creatinine readings for the past three years have been between 280 and 330 (about 20% function) so Kings kept a close eye on them. Actually my last reading when I left was at 250 do that's the best they have been for ages. Hopefully they will stay that way!

Thanks to everyone else for support. Off to sleep again now.

Scott

[scott9Participant]

Thanks a million for the continued support. I'm on Day zero – the first one. More bags of stem cells to come tomorrow. So far so good. Just a little bit of sickness but I'm prepared for worse to come in the next week or two.

Eve: my window does look out at a brick wall but they may be moving me in a day or so and I might get a better view then. My goodness you had some journey. We only need to come from Purley and it's dead easy. A couple of stops to Clapham Junction then connection to Denmark Hill another three stops.

Mari: thanks ever so much re supporting Linda. However I have to tell you she is totally computer illiterate. Plus every time I phone her mobile it goes to the answering thing. Our two sons ( 27 and 25) plus their girlfriends are really supportive and are making sure she is OK. Plus her family and mine, although mine are based in County Cavan so supporting by phone.

Tom and Phil: I'm really trying to stick to your advice and just take one day at a time. If I ever think about the whole thing it becomes too much to cope with.

All the best

Scott

[scott9Participant]

We are in the same boat Jo what with our damaged kidneys. Maybe if I get through this OK you might consider the SCT option as well. Anything to keep us going!

All the best

Scott

[scott9Participant]

A huge thanks to all for the support. I showed this to Linda (my better half) and she thought it is just fantastic how everyone supports each other. Day 1 at Kings just about over. Hickman line in place etc etc etc. tomorrow the chemo and I discovered that is not day zero. That will be when the stem cells go back in so I actually have two day zeros as that will happen on Thursday and Friday. In view of the fact my kidneys are badly impaired Wednesday will be a rest day to help flush the chemo out before the transplant. They seem to know what they are doing here thank goodness!

Eve- this is my first SCT. I declined the operation when I was first in remission back in 2011. I chose maintenance therapy instead but that only worked for a year. As I'm running out of options I thought I ought to give this a go now I'm back in remission again.

All the best

Scott

[scott9Participant]

Hi Tom,

I have followed your progress with great interest. Really happy to see you are not doing too bad now. I guess you can live with the cough. I'll start my post today as I go into Kings tomorrow for the next few weeks. I wish they would find an easier way for us to keep going!!!!

All the best

Scott

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