[scott9Participant]

Hi Rebecca

My kidneys have leveled off at where they were when I started the SCT process ie at about 20%. They actually improved slightly while I was in hospital having the SCT. They said it was because I was on so many drips that the kidneys were well and truly flushed. There was never any mention of dialysis. Funnily enough I’m due to go to Kings on Thursday to the renal unit for a check up. They will take my bloods and if there is a problem I’ll be told soon enough.

I’m also due to go to London Bridge hospital next Monday to get the results of my bone marrow biopsy. I’m glad I don’t have to have too many of those biopsies as they are not exactly pleasant.

Keep fighting.

Scott

[scott9Participant]

Hi Jan

What a huge disappointment that your Myeloma is creeping back. You were only telling me recently about taking curcumin to help keep it at bay. Have you stopped taking it now or are you sticking with it? I’ve only just started to take it and am hoping I might get two or three years remission. I’m on 1 pill a day at the moment but will gradually increase the dosage.

All the best

Scott

[scott9Participant]

Hi Tom,

I’m really really sorry to hear your bad news Tom. Its like living with a time bomb. You can never forget that one day it will rear its ugly head again. Last time it came back for me I was put on Bendamustine. It was certainly better for me than Velcade. I’m still suffering from the peripheral neuropathy I got from Velcade back in Sept 2010 to Dec 2010. They stopped the Velcade in Jan 2011 as my body couldn’t cope with it. I was switched to Revlamid at that time.

I hope whatever treatment you get works out well for you. Good job all these trials are coming along for us. Hopefully the new drugs will keep us going a while yet!!

Stay strong.

Scott

[scott9Participant]

Wow. I've just logged on and have been shocked and saddened by the news. I always assumed Dai would outlive me as he was such a great fighter. He has been such a stalwart on he forum and always had time to give detailed explanations on things. Great source of information.

My condolences to his wife and family. He has been a great inspiration and I will not forget that.

Scott

[scott9Participant]

Yep, I now have eye problems. I've developed cataracts over the last three years ie while I've had myeloma. Not sure if its from the myeloma or the Velcade or the Dex or any of the other drugs I've been on. Once I get over my SCT I'm due to get them cut out. At least this can be sorted out!!

All the best

Scott

[scott9Participant]

Hi Tom

Yep, I discovered I had this disease from a broken bone in my lower back. It does ache now and again and I worry about another break but so far just grumbling pain. Its like the peripheral neuropathy in my hands and feet. Thats always there and I have just got used to it.

Happy days!!

Scott

[scott9Participant]

Hello Dai

I was just thinking today that you had been very quiet now for a while. I was starting to get worried about you. Really glad all seems OK for you. I've actually developed cataracts since I got this blasted disease. Once I have recovered some strength fro my SCT, I have to get the lenses cut out and replaced so I can see a bit better. My goodness, if its not one thing, its something else!!!

All the best

Scott

[scott9Participant]

Hi Lolly

Got your message and couldn't find your email address so replying here. The shop in Kings has ice lollies etc plus there is an ice cream van by Denmark Hill station if he would prefer something from there. I actually couldn't face ice lollies and just used the mouthwash and mouth drops they gave me. I still ended up with a sore mouth and throat. I guess thats just part of it all. Its not too bad and knowing its coming probably helps prepare for it. Look on the bright side, it should give your husband a good period of remission. I've been out of there since end August and am now a lot better. I'm due to see the specialist tomorrow. I'm hoping he will say I'm on track re my recovery as I dearly want to get out to Spain for a bit of Spanish sun next month. He told me that it takes about three months from transplant to get back to some sort of normality and to be able to go on flights etc. The best advice I got was to take one day at a time and I sincerely recommend that to you and hubby.

Good luck

Scott

[scott9Participant]

Hi Jo

Just read your post as I have not been feeling too great the last couple of days. The SCT has really knocked me over. Its a very slow recovery process. Ah well, got to be done! I've been trying to drink three litres a day for goodness knows how long. I actually don't measure it but just drink cups of tea and lots of squash. I'm into grapefruit squash these days. I suppose if you drink about 2 litres a day its not hugely different. I always thought it was best to keep the kidneys flushed through. Still I guess your consultant knows what he is talking about.

Hi Susan: Lets hope the curcumin does us some good. I'll start on it in November and build up per the blog that Jan directed me to.

All the best

Scott

[scott9Participant]

I don't know about it. Where will it be held?

Scott

[scott9Participant]

Thanks a million for the information Jan. I'll try working up to 8 grams a day as well, when I get started in November. I looked through Margaret's blog and also discovered something called Nigella Sativa. I must order some of that as well.

All the best

Scott

[scott9Participant]

I wouldn't worry too much as this is a fairly routine part of the process. 4 days of jabs will probably be enough for you. When I went for my harvest I only saw the nurses. They know exactly what to do as they do it all day every day. It didn't work for me first time. They tested my blood and the stem cells just weren't enough. I had a break and did it again and it was fine. They will get you sorted as its what they do so really don't worry. I worried more about what to do all day and brought in my PC so that sorted me out.

Not sure how my kidneys are doing. Last week the reading went up to 333 so I'm hoping it won't go up much further.

All the best

Scott

[scott9Participant]

I was also told to prepare for a three day harvest. In the end it took two days to collect enough cells. Best to get plenty of cells rather than not enough. Bring a book and/or a PC loaded with films to pass the time as you will be stuck in the chair most of the day. They won't start till they have checked your bloods to make sure there are enough cells to harvest. Which hospital are you going to?

All the best

Scott

[scott9Participant]

Hi Jo

That is a great description ie the sword of Damacles. That is exactly how I feel about it as well. I'm seriously hoping the SCT hasn't wrecked my kidneys. I'll let you know what the next creatinine reading is for me in due course.

All the best

Scott

[scott9Participant]

Hi Jan

That is hugely interesting. I've ordered a supply from Amazon and it redirected me to Detoxpeople who are based in Essex. I've got 120 capsules at 500mg for £30. Hopefully they are genuine. I'll wait for three months post SCT before I start to take them. What is this blog by Margaret you mentioned? Please can you post a link to it. I was just going to take the one pill a day per the instructions. How many do you take? You have done brilliantly to achieve three years from the SCT. I know one poor chap where it didn't work properly and he is straight on to Velcade to try to get remission. I'm praying it will work for me after all the hassle of hospital and recovery etc. I'll find out when I have the bone marrow biopsy in November I suppose.

All the best

Scott

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