[tonyfParticipant]

Hi Karen, said it before, dread those days before clinic, just like you.
Best of luck, if you see Dr Barton say hello from me.
Hope it goes well on Thursday.
Regards
Tony F

[tonyfParticipant]

Hi, when I was having my stem cell transplant the hospital I attend have a six roomed isolation ward with private facilities ‘5 star’ there was a gent from the Middle East having a SCT, according to my nurse the whole treatment including harvest was £250,000.
Hope that helps
Regards
Tony F

[tonyfParticipant]

Eve, so sorry. I am thinking of you both.
Regards
Tony F

[tonyfParticipant]

Holly, sorry that you have joined this club, but it is the best place for sound advice and guidance. I was diagnosed in 2012, went onto the myeloma XI drug trial! it is all tablet form! no hospital stay. This was followed by a stem cell transplant. Not trying to tell you that it was easy, but I did it, so have many others. My paraprotiens have gone down to 2.6 so I am in partial remission. I now don’t take any drugs, we travel a lot, have been to Spain, San Fransisco and Hawaii as well as travel in the UK.
Throughout the treatment I have tried to stay as positive as possible. I try not to let this thing get me down and try very hard to do as much as I can.
Do get tired, so have learnt to listen to my body and stop when necessary.
There are other postings on this site about keeping children informed about your health and treatment, to my way of thinking I think children should be kept up to date with everything that is going on.
Good luck with everything, remember you are not alone.
Regards
Tony F

[tonyfParticipant]

Hi, in March 2012 the day before my wife and I were due to fly to Africa for a months safari my GP phoned to advise me not to go, a few days later at the haematology dept at Leicester Royal I was told I had myeloma. I have had no bone or kidney problems. I went onto the myeloma XI trials, and in early February 2013 had a stem cell transplant. At 100 days my pp,s were at 1.8. Although on the trials I opted for no maintenance drugs, wether that was right or wrong, who knows, but I was heartily sick and tired of taking drugs. Since then my pp,s have risen to 2.6 and stayed there. Since SCT we have travelled around the UK, been to Spain, San Fransisco, Hawaii. I walk the dog through the countryside every day, do bits of gardening and DIY and generally get on with it. I can fall asleep at the drop of a hat, sleep well at night. Bones and body feel a bit creaky from time to time, could be age!
Like you I’m in partial remission and thinking that something is going to happen, I get terrified about a week before clinic that they will give me bad news.
I guess that staying positive, laughing a lot, eat drink and be merry, enjoying my family, friends and life, are all important.
You are 52, this awful disease seems to be affecting younger and younger people, see other postings, please don’t give up, stay positive, you can beat this thing.
I am 70 in a few days time, we are having a big party, my kids are coming in from all over the world! then off to a clan gathering in Braemar. My ambition is to do it all over again when I’m 80. Haha, is that possible!
I guess everyone on this site has a tale to tell, I look forward to reading them.
Regards
Tony F

[tonyfParticipant]

Hiya folks, I attend the Leicester Royal Infirmary, I’ve only ever had one BMB. As a matter of course the hospital give the patient gas and air, worked a treat for me and speaking to others they were the same.
Odd how they all seem to work differently!
Regards
Tony F

[tonyfParticipant]

Evening Stanley, yes I also was given Mozobil, ( check out the price per shot, you will certainly be getting your money’s worth from the NHS! ) as my stem cell harvest was over two days I had two injections.
Best of luck with the transplant on August 11th, hope that it all goes well, during and after.
Keep us posted on your progress.
Regards
Tony F

[tonyfParticipant]

Must have missed that part of Jeffs post ref online access to hospital records, I attend the same clinic so next visit will ask the obvious question, will let everyone know.
Regards
Tony F

[tonyfParticipant]

Hi Karen, haven’t seen you in clinic, really pleased that it is all going in the right direction for you. It’s a good feeling when you restart doing all of those things that others take for granted. Still get tired occasionally and have to pace myself doing things. Because I am on the myeloma XI drug trial I go up to the Hope Clinic, bit less hectic up there!
Glad that you are progressing well.
Regards
Tony F

[tonyfParticipant]

Hi Angela, yes I was given a pre printed form by the transplant team when they released me back to the haematology specialists. I had my SCT at the beginning of February 2013, so a year before your husband. The first series of ‘baby jabs’ was 6 months after SCT. I had, pedicel, pneumovax and meningococcal. The second lot was at 8 months and the final lot at 18 months. I think that is it, but have my next clinic appointment on 7th August so will ask then. After the first set of jabs (August 2013) we went to Spain in the September.
So based on the above reckon your husband is about due for his first round.
I’ve said before, strange how different hospitals conduct themselves, you would have thought that there would be certain protocols!
Anyway hope that helps
Regards
Tony F

[tonyfParticipant]

Hi Sarah, I had my SCT when I was 68, now 18 months later I feel great. Do tend to get a bit tired and need to nap, but that could be age and the desire to keep doing things. I walk my dog across fields and woods for a couple of hours every day. Bits of gardening and DIY. As John and Rebbecca have said each individual is different but the SCT is very doable. My family are/were great, helped and encouraged me all along.
I was in isolation for three weeks, it took about 6 further weeks to get up to strength, and I went on from there. I am on myeloma XI drug trial, but opted for no maintenance drugs, so am drug free and on three monthly clinic visits.
I reckon the worst bit is having to have all of my baby injections again!
Wish you and mum all the best
Regards
Tony F

[tonyfParticipant]

Sarah, so sorry to hear your story, I feel sad for your loss and pray that you will remain strong and live with happy memories.

Eve, my prayers are for you and Slim, stay strong.

My love and thoughts are with you all.

Tony F

[tonyfParticipant]

HMJ, deepest sympathies to you and to your family for the loss of your beloved dad. From your post it sounds as though he was a true fighter. To survive for 19 years should I hope give encouragement to other readers on this site.
How wonderful for you to express your feelings about your dad.
Wishing you the best.
Regards
Tony F

[tonyfParticipant]

Hi all, thought I would add my tale, like Jill, I visit my GP surgery 2 weeks before my clinic appointment, the hospital have already supplied me with the envelopes, nurse takes the blood, so 2 weeks later at the hospital appointment the detail is there ready for discussion. My GP receives a letter showing the current results and I recieve a copy through the post.
As I am on the myeloma XI trial but on three monthly clinic visits I have an interim blood test at 6 weeks which again is done at the GP, a confirmation letter showing the results is sent out to both the GP and to me from the hospital.
I attend the Leicester Royal Infirmary.
Odd how different hospitals operate!
Regards
Tony F

[tonyfParticipant]

Hi cancer kid, otherwise known as Don. What a wonderful outlook on life and death. I hope that you are considered an inspiration at the hospital, if I had to be parked up next to anyone in hospital I would choose you, a laugh a minute, bet you keep them on their toes.
Good luck.
Tony F

[Author]

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