Struggling Along a Bit While Waiting for Donor News

Sorry about the gap  in entries. This is partly because we’re waiting to see what is happening re my  transplant. I was told I had three potential donors and then that there was one good 9 out of 10 match, but we don’t yet know if she is now at the stage of going ahead.

In the meantime my kappa levels rose a little to 400 and then back down to 300 so I have obviously reached a plateau a little above where we wanted me to be. After discussion with my consultant and the transplant consultant they decided to try me on a regime called PAD. This is the Velcade regime as before (4 injections over 2 weeks with a week rest) together with a nightmare 160 mg of steroids, taken at 40 mg a day, days 1 to 4 each of the three weeks and 4 daily IV doses of an older chemo drug called Adriamycin on days one to 4 of the first week of the cycle. I think cycle two I just get the high dose steroids in the first week but then even so I will need to withdraw slowly. The details need checking as there was some confusion about it to start with.

I had forgotten how nasty chemo is with the terrible tiredness, queasiness and sore mouth. I may lose my hair but that is not something I mind too much about – it will be lost anyway during the transplant. I found week one the tiredness more or less countered the steroids – I am not used to wanting naps all the time!

The worst thing is the steroids – the lack of sleep, bloating, digestion issues, huge puffiness from face to feet with a red moon face, the leg weakness and the general mood changes and irritability. I didn’t seem to get withdrawal much except terrible tiredness. Obviously hanging in my system.

At least my platelets have held up so far and although my peripheral neuropathy is definitely around, it is not too bad.

This week the sleeplessness has been worse and now I am very tired and also feel completely woolly headed. However, we decided to get the decorating and kitchen DIY work done before the transplant as it can’t be done afterwards (spores in plaster are very dangerous for example) so we have been running around sorting that and trying to move all the stuff from the rooms. So no rest for the wicked. The clearing has been quite therapeutic actually provided I have done it slowly.

On other news – I had my tooth extracted ok but the hole left is not nice and I keep biting my tongue which has added to the sore mouth problems. No sign of jaw disease though.

I am having a gastroscopy next week to check out the guts prior to the transplant – especially to see if I have the h.pylori bug. Hope not as I don’t fancy the antibiotics that kill it. I hate these procedures but will have it under sedation as before. I made a decision to come off Omeprazole for my stomach acid as it can make you more prone to hospital infections like c.diff which I had before. I went cold turkey on it but have had to go onto Ranitidine now as the steroids give me terrible acid too.

I haven’t had any new levels yet and have my rest week with steroids coming up, so nothing much else to report. I will put up an entry when I know more about the transplant.