Hi Johno, not replied to this post but can thoroughly endorse everything Rebecca and Carol have said. I too counted the days down and set stage objectives during my stay in hospital. I was given a Gym bike in the room as well, I’m in Germany but I believe a number of UK hospitals do the same. They are very concerned about lack of exercise and…[Read more]

Morning Carol,

I actually started off with PAD but that overstressed the liver so much I had a further 2-3 weeks in hospital. They were worried about the MM so the decided to try low doses of Revlimid even though the liver enzymes were very high. This was abandoned after two weeks because of the concerns over the liver. Once that had settled they…[Read more]

Hi Eve, I don’t regret going through SCT, Slim may have called it character building in the past, it’s just that reading the research and knowing how long it takes to have any form of recovery afterwards makes a tandem SCT seem a bit costly in emotional terms. On top of that, the chances of a succesful tandem are minimal with IGG in the 20’s

I…[Read more]

Hi Maureen,

Sounds like Ian is on the same dose I was on. I started with Velcade in June and started having pain in my feet around August I think. It wasn’t until October it became really bad but virtually cleared up at Christmas. I finished with the Velcade end of October. As for the Dexy, I never managed a proper nights sleep. From August they…[Read more]

Hi Jeff,

My wife and I read the article and certainly gives cause for hope. If it does work then it will certainly help a lot of people. However I believe the article said the drug is being tsted on those with Leukemia and Lymphoma. I understand that trials in the US are being done for MM, but BTK is being used in conjunction with other drugs.…[Read more]

Hi Jeff,

My calculation was just a simple dividing the number of affected people into the known figure for the population: 10 / 30,000 and 20,000/61,000,000.

Having grown up and lived in Melton, I know a bit about the large employers in the town and I don’t believe there is any that has a bad reputation for health and safety or would put the…[Read more]

Hi Jeff,

My calculation was just a simple dividing the number of affected people into the known figure for the population: 10 / 30,000 and 20,000/61,000,000.

Having grown up and lived in Melton, I know a bit about the large employers in the town and I don’t believe there is any that has a bad reputation for health and safety or would put the…[Read more]

Hi Izzie,

If you look at my thread – ‘Buddies wanted’ there is a lot of posts by me, Ang and Carol about what we went through from Stem cell harvest to post SCT. We all had different experiences so it should give you an idea what to expect. As for the Neuropathy, I had the same throughout the harcest in early December- very painful at night, poor…[Read more]

Morning,

Did some basic maths based on the figures I gave in my last post. If I still remember how to use a calculator than the chances of having MM in Melton is an incidence of 0.00033, for the population in general it is 0.000328. That’s not really a big difference. By the way I did badly at maths at the Upper School – like a lot of us there at…[Read more]

Hi Jeff,

I had a good reason to ask as I went to the upper school and lived in and around Melton for 14 out of 23 years before moving to Leicester, So that makes 10 of us with a link to Melton. As they’re are supposed to be about 3,500 new cases a year and possibly 20,000 sufferers in the country at any one time than the ratio in a town the size…[Read more]

Hi Jeff,

You don’t happen to live in Melton do you?

Hi Carol,

The DWP website says that expats can claim so long as they have contributed to the system, eg NI payments. As I have worked for 32 years I believe I have contributed enough. If they ask me to attend an assessment that could get interesting as my medics say I must not travel.

Sarah,

One of the things that cropped up in my wife’s…[Read more]

Hi Eve, think you have the same finger trouble as Maureen, surely you meant ‘take the dog down to the beach’ Certain you can remember what the dog is as well.

Hi Ang,

I believe it was at the 4 week stage that I started to feel nauseaus and had 6 days of diarrhea and vomiting. I was also very tired. Things are definately improving, I have a bit more energy and feel able to do a lot more. Climbing stairs tires me out. We are moving house this month and I find if I pace myself, I can still pack boxes,…[Read more]

Well done Carol, I have to wait until the 13th for my next blood test, so far results haven’t been as good as the medics would have liked but we have so much to get on with to worry about them. Let’s hope your BMB confirms the good results.

I think too many take the NHS for granted and have too high a level of expectation from it. It was always meant to be health care free at source but so many forget it has to be paid for somehow. As some on this site have bemoaned NICE and the restriction on available drugs, your post Kim should help remind them that things elsewhere are not always…[Read more]

What dosage of Dex are you having?

Hi Maureen,

I believe MRI scanners are hideously expensive to buy and run, MRT are even more. With hospitals in Germany being commercial businesses they tend to buy them because they know they will make a return, although not every hospital has them. I believe it would help you and Iain understand the extent of his MM, I had an MRT in November…[Read more]

Just a point about MRI /MRT scans. We attended the 10th anniversary do of the local self help group and they invited some of the top medics to attend and give lectures. One of the things that came out is that an MRT is more accurate at determining the level and positions of MM in the body. My German is a bit poor but the gist was that with MRT…[Read more]