[piatkazParticipant]

Hi Tom
I came out of hospital last week 48hrs after op and doing really well just got a few aches from where they stretched my spine for the op.The neck injury just started after falling a sleep in a transport car 3 months ago just shows what damage this pesky MM does to your bones without you knowing it.
Onwards and upwards
Ian

[piatkazParticipant]

So sad to hear this such a wonderful bubbly women and friend RIP

[piatkazParticipant]

Thanks for all the replies,Hi Bridget it seems the swollen ankles were due to being prescribed naproxen by my GP when my specialist heard I was on Naproxen (anti inflamatory drug) he made me stop taking it straight away and my ankles have returned to normal.I'm on codiene now due to firstly falling a sleep in the transport car and having a very achy neck which then went to pain under my arm pits have had x rays and scans but nothing found,it's been 6 weeks now and the paranoia sets in but specialist isnt concerned just thinks it's muscle and nerve problems but has giving me a MRI to relieve my concerns.besides that Bridget I'm doing very well 10 months post allo and still in CR long may it last.
Ian x

[piatkazParticipant]

Thanks Mavis

[piatkazParticipant]

Thanks Tom

[piatkazParticipant]

Hi Shirley

I'm feeling really well at the moment I had issues with gvhd but mainly skin issues itchy palms and all the skin peeling off,itchy eyes,skin all over coated in a red rash still a very slight red tinge on my chest had a skin biopsy to prove it was gvhd.I have been lucky that it hasnt got to my organs so far so have been lucky havent had a stint in hospital yet dont know if the chances of more gvhd reduce the longer you go on its been nearly 9 months now.As Shirley says there are a few of us who have been on this treatment so any questions are welcome
best wishes Ian

[piatkazParticipant]

Hi Penny

I had an auto in January 2011 then a mini allo in June (brothers cells)It's been 9 months since my allo and at the moment all is still going really well,but as Shirley says you've got to watch out for the gvhd.The mini allo is designed to reduce the chances of the gvhd of which I've had three bouts of but all minor.ask as many questions as you like
All the best
Ian

[piatkazParticipant]

Hi Helen
I found from past experiences they never offered me a sedation but when I asked they were only to willing to give me one,I had bad experiences with the last 2 BMB's thats why the last one was done under sedation and what a difference didnt feel a thing it was all like a dream.
I had an Auto in Jan 11 then my mini in June 11 using my brothers cells and my last results were completely disease free all part of a trial,long may it last.
All the best
Ian

[piatkazParticipant]

Hi Helen and John
I havent heard the connection between MM and prostate cancer the only thing I've heard is using maintenance drugs for long periods may possibly cause secondary cancers.Them Bone Marrow Biopsies arent pleasant I had 5 without sedation but the last one I used sedation it was so better so it will be sedation from now on.
The only connection I can see with my MM is chemicals also I've worked in Dairy's for 20 plus years and your in close contact with all sorts of chemicals.Good luck with your up and coming SCT I've had 2 and just had a mini allo,so any info you need about auto SCT theres lots of people who have had them.
All the best
Ian

[piatkazParticipant]

Hi Wendy
Portugal hopefully is a good omen also my brother has just gone over there to live so theres another coincidence all the best with that.
When ever I've discussed the outcome with my specialist he's always said there a 20% chance of a cure and a much better chance of a long remission with this treatment.If you ever decide to go ahead with the mini I've made a spread sheet with the treatment you get when in hospital if you want one I could e-mail you it.Mine is part of a trial using revlimid as a maintenance drug which I will be on for approx 9 months (very small dosage)
All the best
Ian

[piatkazParticipant]

Hi Wendy
I was talking to my trial nurse today and she said they havent checked for chromosomal abnormalities but she would check it out with my specialist,on another note I was given my results from my 6 monthly bone marrow biopsy and was told I'm disease free at the moment so all going to plan after the mini allo.
Ian

[piatkazParticipant]

Hi Wendy
Welcome to the mini allo journey,the whole purpose of the mini allo is to reduce the chances of getting serious GVHD they remove the T cells from your donor cells and they dont give you the Melphalan they give a more gently chemo as the specialist said its just to punch a hole in your immune system.They have mirrored the treatment used for Lukemia which is very successful.
Ive never heard of chromosomal abnormalities and has never been mentioned by my specialist but I will mention it when I see him on Wednesday.
I found once I decided that I was having the mini it was easier to cope with good luck with your search for a donor and keep me updated with your journey,I'm 6 months post allo and still doing well.
Happy Christmas and new year
Ian

[piatkazParticipant]

Hi Shirley.

Its 90+ days post my mini allo using my brothers cells just got all my results back from the bone marrow biopsy I am still in complete remission my immune system is now 99% my brothers and my T cells are 95%,I've had low forms of gvhd (even had a skin biopsy to prove it) red skin rashes itchy eyes and itchy scalp,hoping to be really well for xmas this year seems it will be the first xmas without tratment for years
All the best
Ian

[piatkazParticipant]

Hi Wendy
I had an auto in Jan this year then had my mini allo in June At present I'm doing very well had issues with Graft versus host which included red and itchy skin all over my body and itchy scalp.My allo was a sibling donor (my brother).I know this is a difficult decision to make but mine was very aggresive and my hospital doesnt normally do mini's they only did mine because it was a trial, so it was my last chance to have this done so I went for it.All the best in your decision making please keep us in formed if you want any more information about the mini dont hesitate to contact me,if you want you can email me piatkaz@aol.com.

Ian

[piatkazParticipant]

Hi Bridget

Hope all goes well and they sort that pain out
Look after yourself
Ian x

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