A few weeks ago I was meant to have a gastroscopy and a colonoscopy. I was also neutropenic as I had the flu. I had asked both the doctor in haematology and my GP if it would go ahead and they thought it would be ok, but when the gastric guys looked at my blood results (after I had drawn their attention to them), they didn't go ahead as the…[Read more]

Hi, Sandie,
On the Zometa front, I think it's generally given as an infusion once every four weeks. When I was on it for about four years, I just had it tacked on to my clinic appointment. I only came off it because my kidneys were failing. I now have Bonephos.
On the feeling sick front, has your Mum tried Acupressure Travel bands? You wear…[Read more]

My platelets went down to 18 when I was on Velcade in the summer, but it was a recognised side effect so I wasn't given a transfusion as they would just drop again. It meant I couldn't have the Velcade, so I was not amused at having a 130 mile round trip for nothing. As they persisted low, the dosage was reduced, but the course extended from 6…[Read more]

Yes, I liked to get dressed too, even if it was only swapping jammies for t-shirt and joggers. Soft toilet paper and wipes made life more bearable too. Things to entertain you as mentioned by the others – also photos- on a digital photoframe or a multi-picture frame, depending on how much space you have.

All the best.

Yes, Fennel fills the spot after a weekend of rehydration and hospital food – the food at ARI is adequate but not too inspired. I've only been to Fennel for a full meal rather than a snack. It's handy when heading for the airport too.

Yup, it was Morgan McVeighs today. On my 10 days' rest period now, so hopefully will get to stay at home…

Yes! I've been treated at ARI since 2005. In fact this is the 6th anniversary of me leaving hospital after my first stem cell transplant! IO then had 2 years or so remission, then a second transplant(15 months or so remission, but I did go back to work part time teaching secondary in both remissions). Now I've had a year on Revlimid and am now…[Read more]

I have IgA myeloma, though my consultant has never mentioned that it is more aggressive. I had 2 years and 3 months out of my first SCT (Aug 2006) and 15 months from the second one (Aug 2009). I have since had a year of Revlimid and now am on 4th cycle of Velcade, though I had a 6 hour trip to hospital today to have no medication as my…[Read more]

Plerixafor worked for me 3 years ago. I had 3 doses I think and that gave me enough for a second SCT which gave me another 15 months or so. I didn't like the night panics I developed on two nights though…

I think I had this in 2009 before my 2nd SCT as part of the Myeloma X trial. The main problems were caused getting lines in to me for the adriamycin part. I had a pump for 4 days at the start of each cycle, but that was because my body really doesn't like lines. My Hickman line had to come out early on and then they used a PICC line and there…[Read more]

This isn't really a suggestion, but last Monday we celebrated our 35th wedding anniversary by revisiting the Queens View, a beauty spot to the north of Glasgow where we had gone for our engagement. We live a long way from there now but circumstances took us to the area. Well, it was tipping down with rain and we couldn't see a thing – Ben…[Read more]

I first had Heparin way back in 2006 when I first started CDT. It was then withdrawn and I developed a DVT. Anyway when I hesitated as the nurse was showing me what to do, my husband offered to do the needful. That soon got me motivated! I also did the GCSF injections and have had Heparin for the last 9 months. I like to do the injection…[Read more]

Have you tried acupressure travel bands? You wear them on your wrists- you can buy them at a pharmacy. I wore them extensively during chemo and SCTs and while I was still sick, I think they did help.

Hi, Penny, Sorry that you are looking at a SCT at all, but if it's any encouragement, I've had 2 SCTs in Aberdeen in 2006 and 2009, and I'm still around to cause trouble. We live 65 miles from the hospital and that was and is a major issue, especially as my husband feels he needs to see me daily. I was in for 4 weeks the first time round and 6…[Read more]

Well, quite, I have also been told it's not hereditary, but my father died of it (at the age of 81. He lived with it for 3 years, but how long had it been undiagnosed before then? He was constantly having sore backs, shoulders etc for many years before then…. No- one will comment on this.