[tonyfParticipant]

Hiya Maureen, I was really pleased for Lawrie, he really wanted to do something for Myeloma, he did well.
How are you guys doing? I don’t get onto the forum too much seem to be very busy, we restarted a support group in Leicester at the beginning of the year, it seems to be taking up lots of our time.
As for me, I had my SCT just under 30 months ago, decided against any maintenance drugs, so have been drug free all that time. Sadly it’s creeping back, pp’s gone up to 8. I have a clinic appointment tomorrow and I suspect I will be on velcade or similar very soon. Other than that I’m fine.
Hope that you are both ok and enjoying life.
Regards
Tony F

[tonyfParticipant]

Ian, I hope that all goes well with your SCT. You ve certainly had a long wait for this moment, let’s hope that it gives you a long remission.
I guess over the years you have read all about SCT, it isn’t a cake walk but you are a tough guy, going through all you have been through over the past few years.
I wish you all the very best.
Regards
Tony F

[tonyfParticipant]

Joe, pleased that you got through your tests okay.
To everyone, I can’t believe the differences in the way that hospitals approach a bone marrow biopsy. I attend the Leicester Royal Infirmary, in doing a BMB it is standard practice to give a local anaesthetic and to give gas and air. It really does help, it seems that I have particularly hard bones so it is a struggle for the nurse to get the sample, fortunately with gas and air I really didn’t care what was going on! Why don’t all hospitals adopt a similar process?
Regards
Tony F

[tonyfParticipant]

John, I hope that you reach the right decision for you. By way of spurring you on, I was 68 when I had my SCT.After about 6 weeks I was beginning to lead a normal life, 26 months down the line, and being completely drug free for that time, my pp’s are slowly increasing, currently about 6. I have recently had an MRI and a bone marrow biopsey, to check me out. Not sure if they will resume any treatment, I suspect a watch and wait.
But now at 70 I have been told that they could look at a second SCT up to the age of 75!
I dont regret the SCT it has given me all of that time, drug free and able to travel quite extensively, more importantly lead a near normal life.
What ever decision you reach I wish you the best.
Regards
Tony F

[tonyfParticipant]

Sad but true!

[tonyfParticipant]

Good result all round!

[tonyfParticipant]

Some good responses here, I guess the message is not to let this myeloma get to you!
I am helping to reform the Myeloma Support Group in the Leicestershire/Rutland area, thats keeping me on my toes!
Enjoy Easter everyone, easy on the chocolate.
Regards
tony F

[tonyfParticipant]

I thought that it was just me getting older but yes I find it hard to concentrate for any length of time. Have been reading the same book now for weeks! I find reading short articles and stuff on the iPad, ie news etc ok, and my auto SCT was over two years ago.
Get cold feet in bed, but not during the day.
Regards
Tony F

[tonyfParticipant]

Morning Susie, I was diagnosed three years ago, went onto the myeloma XI trial, had a stem cell transplant two years ago but chose not to go on any maintenance. So after transplant my pp’s were just below 2 after 26 months they are at 6. I had just one setback over the 26 months with food poisoning but other than that no drugs other than three monthly Zometa infusion. Consultant is choosing a watch and wait before deciding when to say that I have relapsed.
Hope that helps
Regards
Tony F

[tonyfParticipant]

Live in Leicester if you consider that city only to pleased to be involved.
tony.farquharson@btinternet.com

[tonyfParticipant]

That was meant to read Leicester Royal Infirmary.

[tonyfParticipant]

No, no, at the royal it is a 6/7 roomed isolation unit, you have to buzz to get in, they don’t encourage too many visitors at the start of treatment, even later only two, my wife had to remove shoes and outdoor coat etc before coming into my room, and had to wash hands thoroughly. You don’t get any of the coming and going that you get in a normal hospital ward, even the nurses stay away, I had to buzz them if I needed any attention. The cleaner always wore a mask and really gave the room the once over each day. I had ensuite facilities, a room with a view of the road outside, TV radio. So it got very boring, hence the IPad and Kindle.
Regards
Tony F

[tonyfParticipant]

I was in isolation for three weeks, before going in I downloaded some good books to Kindle, took my iPad with me. There was a radio and TV in the room, so daytime TV got a temporary new viewer!
When I returned home we were careful with surfaces i.e. loo, door handles etc etc. I seemed to sleep a lot, didn’t eat much for a while, after about 6 weeks I started walking out but was very careful about who I came into contact with, then slowly life returned to something near normal. Don’t worry too much about things ,I guess just be sensible.
ps Im 2 years down the line, no drugs, no treatment (only 3 monthly Zometa) we go on holiday, walk the dog daily, etc etc.
Best of luck to both of you.
Regards
Tony F

[tonyfParticipant]

Leicester Royal Infirmary send me a letter after each consultation, briefly outlining the subjects that we discussed, if any treatments were recommended but most importantly all the blood readings.
In the myeloma diary page 15 there is a chart showing the normal blood readings, so its easy to compare.
Why don’t all hospitals do this. It certainly stops me getting worried.
regards
Tony F

[tonyfParticipant]

Maureen, the very best of luck to Ian, oh and to you, you are the carer, and at times I think that the carer needs more support than the patient.
You know from past postings that a SCT is not a walk in the park, but it can and is doable, I am sure that Ian will cope with all that is thrown at him.
Good luck Ian
Regards
Tony F

[Author]

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