Evening Izzie, it takes me a while to get going in the morning, I usually have to stretch etc it is a bit of an effort getting downstairs. Usually sit for a while, have several large cups tea, sometimes take two paracetamol, but then take the dog out for an hour or two across country!
Since diagnosis just over two years ago I have been on…[Read more]

Evening, I too came out in a severe rash with allupurinol, I was taken off it immediately and not given a substitute, mind you I didn’t have any kidney problems. However thinking back at each check up they did look at kidney function, so presumably if there was a problem I would have been given an alternative.
Regards
Tony F

Well done Ellen, congratulations to you and the whole team, really well deserved.
Regards
Tony F

Hi, don’t wish to insult anyone but would hazard a guess the gentleman was late 60’s early 70. The young lady would be mid 70,s, hope I am not insulting anyone. Both spoke about the airbase and how it was guarded by armed guards! The gent talked about the pet food factory. I also noted that Radon is present in the ground around Melton, but then…[Read more]

Just read the BBC pages, I think ibrutinib is a drug designed to fight leukaemia evidently will be in use in Wales by end of the year. Don’t know what the implications are for myeloma.
Regards
Tony F

Just to add to this thread, I attended a day clinic today for a penidronate infusion at the Leicester Royal Infirmary. As one does I got talking to other patients, there were two folk who have lived all of their lives in Melton Mowbray and both have myeloma. Neither have spoken to anyone and were unaware of the high myeloma incidence in…[Read more]

Hiya Jeff and Richard.
Jeff what you have found is so interesting, there must be a link of some description, especially as Dick was in the same place at the same time.
Well worth pursuing that one!
Good bit of research ther.
Regards
Tony F

Vicki and Colin.
Have a great time, but take the thermometer. My wife and I are in Hawaii, with thermometer and antibiotics, first big holiday for over two years! I put Vaseline around the inside of my nose before I flew. Not paranoid at all!!!!
Enjoy it……
Regards
Tony F

Hi Graham, I attend the Leicester Royal, obviously have the same consultants as you, attend the same clinics etc. i have found the opposite to you, it is not general policy to keep results from patients. Whichever consultant I see on my three month visits, they swing the computer screen round and freely discuss anything that I want to know, they…[Read more]

All Clear is part of AXA.
We have a policy via a bank account with the Coop bank. It costs £12.50 a month, as well as travel we have gadget/ mobile phone insurance and car breakdown. Oh and airport VIP lounge access. The travel policy allows unlimited travel, including USA.
I have kept AXA informed of my health situation and pay no access…[Read more]

Hi Jeff.
Are you having a tough time with the Leicester Royal infirmary? That’s a great shame because I have nothing but praise for the place. I was at the clinic last Thursday for my three monthly check up. The system has recently changed, I am on the myeloma X1 trial, been through SCT, opted for no maintenance drugs. As I am on the trial I…[Read more]

Hi John b.
My cycle of drugs was completed in the September, as our daughter was getting married in early Octobers I had said that no matter what I wanted to be there to give her away. So no drugs no treatment. In fact it was planned to start stem cell collection late nov early dec but I went down with an infection so it was abandoned until mid…[Read more]

Hi both john b and carol.
Like both of you I was/am on the myeloma X1 trials.
Today is my one year SCT anniversary! Looking back some of it was a little troublesome, it took a few weeks before I was out and about, walking the dog etc. a year on my pps are at 1.9 I only visit the clinic very three months and opted for no mantainance drugs, so am…[Read more]

A kiddies dressing up face mask!
Maybe you lost something in the translation! can’t wait to hear what you were given.
Tony F

Well done on the SCT. That’s the rough bit over and finished. I hope the following gives you some encouragement ( not that you need it!)
Tomorrow is my one year anniversary since my SCT, I am on the myeloma X1 trial, but I opted for no maintenance drugs. I visit the clinic every three months and today was the day! Since the SCT my pp has always…[Read more]

Hi Chris, firstly happy new year. I had my SCT beginning February 2013, took a while to get back to ‘normal’ but almost a year down the line and I feel great, I have had one stay in hospital for three days back in August with an unknown infection and currently have a nasty cold, but that’s it. I opted for no maintainance although I am still…[Read more]

Happy New Year to all, may 2014 be a good year for us all.
Regards
Tony F

Carol, firstly Merry Christmas. Re SCT it’s your decision but let me say that I had a SCT in February, not the most pleasant of experiences, but you can do it. It took a while to get back to normal, but now I feel great my PPs are down to 2. We have travelled abroad and spent time around this country. I now have 3 monthly appointments at the…[Read more]

Hi, almost the same as jeans husband I was 68+ when I had my stem cell transplant! last February. The only treatment I have now is a monthly penidronate infusion, visit the specialist every three months. So it can be done.
Hope your dad stays strong.
Regards
Tony F