[tonyfParticipant]

Good morning Illona. Thought I would add my comments. I was diagnosed at the age of 67. Until that time I had had no serious health issues and considered myself to be quite fit. Anyway, went through the chemo treatment for 5/6 months, then in February this year (68 years old) had a stem cell transplant, now 8 months down the line I see the specialist every 3 months, next appointment is in November. I am not taking any maintenance drugs, just having a penidronate infusion once a month. I was fortunate that I was diagnosed early and had no bone problems.
I also attend the Royal Infirmary and have found that the team there are fantastic, your dad will be well looked after, I have nothing but praise for the whole team.
Has anyone told you about the support group? They meet monthly and the facilities are open to both patient and carer, so your mum could benefit from what they offer.
Might run into you at a clinic sometime.
If you want any other info you can email me.
Regards
Tony F

[tonyfParticipant]

Hi Karren, good luck with your clinic tomorrow,
Regards
Tony F

[tonyfParticipant]

Well done Scott, that's the worst part over and done with. Take it easy at home, don't get too over confident, just take it easy, it may be a slower than expected process, but you'll get there.
Good luck and take it easy.
Regards
Tony F

[tonyfParticipant]

S it is you guys, have a wonderful time, s'ing down in Cornwall.
Fingers well and truly crossed.
Tony F

[tonyfParticipant]

Morning Andy, never mind the steroids, you have put into words what so many sufferers feel about our carers, I can't add anything more to what you say.
Thank you
Tony F

[tonyfParticipant]

Phil, I like it, having just spent the weekend in hospital with a dreaded infection, champing at the bit because we are going on V next Sunday to Majorca.
S from now on its the V word in this household as well.
Brilliant, raised a good laugh, thanks.
Regards Tony F

[tonyfParticipant]

Hiya Carole, bite the bullet girl, go for it.
As Peter says the stem cell collection is boring, it's not nice being in solitary for the transplant and anything can happen there, and probably will!
Don't let hair loss freak you out, it's only short term, mine grew back thicker and curly!
My SCT was in February and other than this infection I haven't looked back since, it was the right decision to make. It takes a while for the body to get back to normal.
Just think you could be visiting the family in Oz, that's the positive.
You can do it
Regards Tony F

[tonyfParticipant]

Morning everyone thanks for the replies, encouragement and discussion, it's what makes this forum great.
Dai, I knew Nottingham had a good system, does it work well, should be copied by all the big centres.
Andy, I can't out do you mate, I agree live it, I'm supposed to be off to Majorca next Sunday!
Carol, stay out of the draughty Bosnians way! Haha only joking, lass.
Regards to all, you lot are great, thanks for being there.
Tony F

[tonyfParticipant]

Hiya Carol, that sounds like a real saga. I wish they could isolate the cause of these infections.
At Leicester Royal there is a specific assessment unit that we can contact at any hour of the day or night. When you arrive they do all the tests, then take whatever course of action needed. It's a good system and it works well.
I thought that all hospitals had something similar!
Hope you can get that temperature down ready for next week.
My pp has been at 1.8 since my SCT last February, so fingers crossed for you.
Regards
Tony F

[tonyfParticipant]

So right about infections, there I was happily buzzing along, woke up Friday morning, temperature 39 plus. Straight down to the assessment unit at Leicester Royal Infirmary and here I am lying in hospital bed, being pumped up with antibiotics. I am bored silly, temperature has stabilised, but I have to stay the course.
I bet they will not determine what the infection is, and I have no idea.
So, it's another bank holiday weekend in hospital!
Gotta keep smiling
Tony F

[tonyfParticipant]

Hi Charlie, when I came out of hospital in mid/end of february after my SCT the only drugs I had were antibiotics, they kept me on them for ages. At my 100 day check up in June I opted for no maintenance drugs. They stopped the antibiotics then, I restarted the penidronate and the adcal. Had one 5 day course of antibiotics in July to beat up an infection, we are off on holiday soon, the specialist gave me a box of antibiotics in case I get a temperature and infection to take with me. And that's it.
I have an interim blood test in September, but will have that done at the GPs. Next appointment with the specialist early November.
My paraprotien level has been at 1.8 since the stem cell transplant, other bloods seem there or there abouts.
They still say I'm in partial remission!
Like I said I am still on the myeloma XI trial.
I'm being treated at the Leicester Royal infirmary, I have nothing but praise for evryone, but most of all to my young GP who made an early diagnosis, I think she saved me a lot of troubles, problems and heartaches, judging by some of the problems folk who contribute to this site have had.
Again, good luck with everything.
Regards
Tony F

[tonyfParticipant]

Well done Charlie, keep it up.if you are concerned about being randomised onto lenalidomide next week when you go to the clinic why not ask if you can have nothing. After my SCT I decided to have NO maintenance, so I am still on the myeloma XI trial, still being monitored but have no drugs except penidronate monthly infusion and a daily Adcal. If things go cockeyed there will be drugs and treatment available, and I'm still on the XI trials.
Good luck with whatever you decide.
Regards
Tony F

[tonyfParticipant]

That's really good news Maureen, I really hope that Ian's homecoming goes well. Guess it will feel strange for both of you.
Love to you both.
Regards
Tony F

[tonyfParticipant]

Good evening Lynne, so sorry that you have had to join us, and so young! You will find lots of help and advice here. Sadly this wretched disease effects everyone differently, lets hope that your diagnosis was quick and early.
For my part, I was diagnosed in early 2012. Went on the myeloma drug trial, like you was allergic to allopurinol, so came off that. My treatment lasted for 5 sessions, then at my request, our daughter was getting married, I stopped all drugs for October, November and December, had a stem cell transplant in early February 2013. My paraprotien level has been at 1.8 since the transplant, othe levels are there or there abouts, I don't see the specialist until November and we are off abroad for the first time for two years.
Please stay positive, for your sake and for the family, I am sure you realise that there will be some tough times to come, but you can do it.
Good luck and keep us posted.
Regards
Tony F

[tonyfParticipant]

Best of luck John, long ,ay it continue.
Regards
Tony F

[Author]

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