Hi Maureen, to say what happened was galling is an understatement. At least it’s over with and Ian is not in pain anymore.

I do hope you have a nice Christmas in London and that the New Year brings something good into your life.

Richard

Well, a little update, I had a visit to the hospital today and my wife came along, She’s brilliant at research whenever the Medics come out with something new and acts as a very good interpreter as well (German Hospital). She’s also very good at sniffing out Bullshit which I’ve never had from this hospital.

Anyway, we discussed various options…[Read more]

Hi Rebecca,
At least with Revlimid, we know that it will stop working at sometime, anyway I was bored with it, the neuropathy is just so boring and as for the stomach cramps, calf muscle cramps and the other side effects, I’ve had those and think I’m ready to try some new ones. Joking apart, I have an MRT at the end of next week and once the…[Read more]

Hi Angela, time flies! It got better because last summer I stopped taking Dexy and the Revlimid has been reduced to 10mg. Had an MRT scan last month, bone damage is stable and frankly doesn’t really bother me. I do get increased bone pain in my shoulders if I don’t drink enough or exercise enough, I have a season ticket for the local pool but I’ve…[Read more]

Hi Dean,

I’ve not been on the site for a while but I had my SCT at about the same time as Rebecca, just about everyone here who made it to SCT managed it and was back home within weeks, it isn’t easy but it is doable. Don’t worry if it is not a great success because there are other options. Mine didn’t really work, the medics were talking about…[Read more]

Hi Eve, great to hear from you again, just a shame about your news. It’s a case of using life’s previous experiences to help you with todays new problems. I am sure you’ll be most welcome here whenever you need a chat and of course, being the Oracle that you are, there are a lot of people that will need your advice.

As for Slim, it doesn’t seem…[Read more]

Had my SCT in Jan’14. Prepare yourself mentally, it is not easy and you will feel low especially if you have the nausea and diarrhea but in the grand scheme of things it won’t last long. Do everything the nurses tell you. I was told to change my toothbrush every week to reduce the risk of infection. I had to change my own bedding everyday, the…[Read more]

Hi there,

Rebecca speaks a lot of sense, people seem to concentrate so much on the inflicted to the detriment of the carer but the role of the carer is as important as the medics. Rebecca and Cashong’s point about tough love is important, my wife gave me s..t some days and at the time I hated her for it but thank her now. It is not easy when…[Read more]

Can’t help with work issues but if worse comes and you need to claim for ESA you should be put in the Support Group and that means you will be entitled to the higher amount with a review every 2 years. It’s still pants but at least it’s better than a lot of others.

Hi Stanley, good to know things are going well, know what you mean about colds, my daughter picked up a cold from school and it’s hit me really viciously. The system here in Germany is that I have to see my GP first for initial treatment and then go to the consultant if it gets really bad. So far just feeling washed out, my GP phas prescribed…[Read more]

Hi there, really sorry to hear about your loss but at 87 your mother most certainly outlived a lot of other people. Time to remember the good times and it’s really good to know that the MM didn’t overall cause her pain or too much discomfort.

All the best for the future

Nice to hear you’re still around and making the most of things. Shame about the 40mg dose, hopefully one day they may be able to reduce it. At least with the sleepless nights we know we will hear from you as that’s when you tend to post.

Richard

Can’t help you with the Marmite craving but when I had my SCT I had a craving for Gingsters Cornish Pasties. I had no chance of getting one as I was still in isolation in a German hospital. It was absolute torture.

Hi Lorraine,

Well, for a 2nd SCT I think for me it will be done after all other options have been exhausetd. As I said the first one didn’t really working in thjat it reduced my IgG from 36 down to 24. I think the other problem is that whgen they harvest the stemcells, they cannot guarentee they have removed all the affected paraprotein cells so…[Read more]

Hi there,

Sorry to hear about your Liver problem and I had something very similar when I first started with Chemo. I had PAD which caused a very high increase in Liver enzymes, so much so the Medics stopped the Chemo for a couple of months hoping the enzymes would drop. They did eventually but it was a tough call whether to continue Chemo or wait…[Read more]

Morning, before commiting to any new treatment I think you need to do your research as to the risks and side effects. Read trial reports, research documents, anything written by professional bodies. There’s plenty available on the internet, some are quite old though. One of the reasons I rejected an allo transplant was because the risks of…[Read more]

Hi there,

Like you I was in my 40’s (just a few month’s before my 50th) when I had my diagnosis and later had the auto SCT which also turned out to bit of a bit of failure. My IgG dropped from 36 to 24 only but stabilized enough for it to be left alone. It wasn’t even classed as remission by the medics. Unfortunately after 14 months it started to…[Read more]

To just to follow on from Andy, I had SCT and it didn’t really work. My IgG went down from 36 to 24 post SCT. I believe in the UK they wouldn’t even consider SCT if the Paraprotein level is above 1(I live overseas). The other point is that for a lot of people remission post the first SCT only lasts 12 -18 months as was my case. After all that it…[Read more]