I am really sorry to hear about your brother's death and offer my condolences. It is a truly awful illness because you just don't know what its going to throw up next. There are lots of very inspiring people on this website who will give you help and support but would suggest you keep pushing the doctors for an answer. I know it won't bring him…[Read more]

Although I didn't know Keith, reading the posts here tells me he was well liked and respected. I hope his funeral goes well and is well attended. It's now time to support the family.

Thanks for the support San, so far things are ok with the Revlimid. Shocked at the cost of it though, the wife did some research and it's about 7000 Euros for 1 months supply. Thats just the drug and not the Dexy or the medical care. The Dexy has given me zits so I feel like a teenage again – No job, Mentally insecure, no one undertands me and…[Read more]

Right, been to hospital this morning and the liver enzyme levels are going up again. The paraproteins are on the increase so the doctor has decided to go ahead with Revlimid-Dexy Chemo starting tomorrow. The Revlimid she tells me can also be dangerous with raised enzyme levels. She didn't look too happy but believes it's worth the risk – I'll find…[Read more]

Now, a month on, it looks like I may restart Chemo. They are changing me from PAD to Revlimid and Dexy. They are absolutely certain the PAD caused the extremely high enzyme levels in the liver (Alaninaminotransfer should be below 50, went up to 1100 at one stage). Paraproteins have stayed relatively stable.

This will hopefully begin next week…[Read more]

The French (known in Europe for being hypochondriacs) are very much into pill boxes for 7 days dosage and the Germans like them as well, I use a spreadsheet with tick boxes, I only tick when I have actually pulled out the ones to be taken. My wife wants me to have a pill box for holidays and short breaks.

Thanks for the thought. Off to the hospital this Thursday for full blood tests. If all goes well I will start again soon thereafter. As a stop gap I have to take the Dexy for the next 4 days. We wait and see.

Richard

Do they make them for 6'+ blokes?

Be good to wear in the coffin, may surprise a few people.

Just came across this thread because it had started and lay dormant before I had joined the site. There are elephants around, big ones as well but I think what has helped with MM is that I've always had a bit of a big mouth and prefer to have things in the open. Friends and work colleagues both know that I have suffered two bouts of depression in…[Read more]

Well, you're certainly way ahead of me when it comes to treatment but already you seem to be doing pretty well if you've got this far without any major ailments. I think, like me, you're getting pretty fed up with hospital visits, I am 49, diagnosed at the end of Feb and have already spent a total of 4 weeks in hospital. If diagnosed in Sept 09…[Read more]

Well, there's not a lot for me to add except welcome to a very exclusive club, membership criteria is high, if I remember rightly there's only about 4000 new members a year to the Myeloma Club in the UK and not all are on this website.

Think I'll begin the overseas branch.

Anyway, if nothing else, it is good to talk and there is a sense of…[Read more]

Ignore my last post concerning being ok for Chemo. Had a bloodtest on 8 April prior to the chemo starting and was told my enzyme levels in the liver were way to high – 20 x higher than normal. So, back into hospital straight away where I stayed until yesterday.

The enzyme levels are still too high and they are now concerned about the MM. They…[Read more]

Chemo cancelled again, this time because of liver. My Aspartate Aminotransferase (AST) level apparently should 0-50 and is at nearly 300, my Alanin Aminotransferase was 20, now its 400. The Onkologist thinks it's caused by the red drug in the Chemo, he's done a ultra scan of the liver and that is ok.

Back on Thursday for another check. I don't…[Read more]

Hi San,
Can't be nice for you or your mother. I am certain that if we'd stayed in the UK my MM wouldn't have been picked up until a lot later, like your mother. There is a difference in attitude here, it's about spotting things early so that costs are kept down later, the UK seems to be about saving cash upfront which then leads to excessive…[Read more]

So far, here every one has been really good, If an error is made they admit it, usually it's me that makes the error. Couple of weeks back in hospital I was asked by one of the nurses to provide a urine sample over 24 hours, unfortunately I asked for him to speak only German so I could learn, by the time I worked out when the sample was to start,…[Read more]

Cheers Megan, here weekends are treated as sacrosanct. Shops close on Sundays, over Easter everything was closed on Friday, Sunday and Monday. It was great, proper quality time with the family, no chasing your tail in ever decreasing circles, proper time doing what we wanted, not what we had to. Right, rant over, orange box away… We at least got…[Read more]