[tonyfParticipant]

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

[tonyfParticipant]

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

[tonyfParticipant]

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 answer any questions etc and it is always followed up in writing a few days later. I’ve never been asked to pay any monies. The same letter goes tony GP. I find your situation very strange! I think it needs questioning.
Regards
Tony F

[tonyfParticipant]

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 charges, it will be reviewed in June 2014, the anniversary of the policy, we have had the policy in place for 4 years, so was pre myeloma.
I was diagnosed with myeloma, two years ago, just two days before we were due to fly to Africa, AXA paid the full amount, with no argument.
Guess we have been lucky!
Regards
Tony F

[tonyfParticipant]

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 reported in to reception and was sent up to the top floor to a new unit, specifically for trials patients, was attended to immediately, in and out within the hour!
If your hospital is the LRI have you spoken to anyone of your worries?
You can email me privately if you wish.
Regards
Tony F

[tonyfParticipant]

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 January, that happened and the transplant went ahead exactly one year ago today. At that time I was 68 nearly 69. After SCT I had just under three weeks in hospital, it was a few weeks before I could start walking the dog but was able to do things about the house fairly quickly. As Carol suggest it might be an idea to get a cleaner in for a while, why not have a word with the Macmillan nurse at the hospital, see if they can organise help in looking after your wife, hopefully that help would be short lived and life could resume.
Good luck
Tony F

[tonyfParticipant]

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 completely drug free. We’ve been given the ok to go to the USA so are off later this month, taking my trusty thermometer and a pack of antibiotics with me!
So, good luck Carol, you’re through the worst.
To you john, go for it.
Just remembered one thing, carol! you’ve got to have all your baby injections again!!! Did they mention that.
Regards
Tony f

[tonyfParticipant]

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

[tonyfParticipant]

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 between 1.8 and 2.3 today it sits at 1.9. No problems there, come back in three months time. It took me some weeks to recover after the SCT, but it wasn’t long before I was walking the dog and getting on with life. We had three holidays last year, two in the UK and a trip to some sunshine. Hey and my hair grew back curly!
Currently I have a dreadful cold which won’t shift, have a course of antibiotics to stop any infections, other than that, I feel good.
Not sure that an immediate second SCT is the norm in the UK, I don’t think so, but we are all different!
Specialist has given the ok to go to the USA, so we’re off end of February. Usual precautions, and take your thermometer! Haha.
Good luck to you Richard, I hope you think the SCT was worthwhile and that your life soon gets back to normal.
To any forum folk about to have SCT treatment, stay with it, at times it’s rough going, but you can do it, as with me your quality of life will improve.
Regards to all
Tony F

[tonyfParticipant]

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 monitored for the myeloma X1 trials. I decided against maintainance drugs because of what I had read re the side effects, I was tired of feeling rough and thought I would go with no drugs. Proved to be the right move.
By the way I’ve been abroad as well as holidays in UK, feel good.
Best of luck with your choice.
Regards
Tony F

[tonyfParticipant]

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

[tonyfParticipant]

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 clinic, I don’t take any drugs, chose not to take any maintenance drugs, the only drug I have is a monthly penidronate infusion, which will continue until March 2014. I was very nervous and concerned pre the SCT but looking back I’m pleased I went ahead. Given a choice I would do it all again.
Hope you make the right decision.
Best wishes and good luck
Tony F

[tonyfParticipant]

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

[tonyfParticipant]

Hi, I was told not to bother with taking supplements, just eat a good healthy balanced diet, veg and fruit especially. Told not to drink green tea!
The specialist nurse at the hospital should give you a diet sheet, my wife likens the diet to a pregnancy diet?
As for survival stats, ignore them, I guess we are all in the lap of the gods.
Did I read on another post that you are going to have a stem cell transplant, keep us informed.
Regards
Tony F

[tonyfParticipant]

Hiya, speaking from experience, don't buy cheap, they won't stand the pace.
Buy a Braun, it's what they use in hospital and really do the job.
You have to buy a box of caps, but the thing will not let you down.
Regards
Tony F

[Author]

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