[KeithH17Participant]

Hi Kay,sorry to hear your PP's are on the rise after SCT.
I had my second SCT in Aug 2011 and my PP's at the last count 2wks ago were 2.9 although like you I ache in most places.
Shoulders,neck,upper and lower back,in particular my right hip area is very stiff and aches most of the time but I guess that's MM for you.
I do hope your scan is ok and that you don't need to start the horrible treatment regimes again.

Best wishes…Keith.

[KeithH17Participant]

Yes this is very interesting stuff.
When I hear things like 7-10 years or more survival it's music to my ears.
I guess after 4yrs and 2 transplants I see myself as still only halfway down the road and then there's always more treatments coming along so who really knows,future advances could even stretch it to 15-20yrs.

So here's to a very healthy and happy 2012 to you all.

Keith.

[KeithH17Participant]

Thank's Min,David and Dai for your posts.
I must admit Dai your experience seems to be a mirror image of my own.
I also have a facial itch,in particular around my neck.
If I had known that by having both Jabs at the same time there could be a risk of this happening I would never have gone through with it.
I am now going into the sixth week and I'm well sick of it I can tell you.

Hope yours clears up soon.
Keith.

[KeithH17Participant]

Hi Jo I've only just seen your post and very sorry to hear of your relapse.
As you say 2yrs 8mths is'nt at all a bad remission,mine was 4mths less.
Still it is disappointing when you find yourself back to square one.
Like me I know you will face up to the ogre head on and once again beat it into submission.

Take care Jo and do keep us up to-date.

Keith.

[KeithH17Participant]

Hi Debs and thanx for your reply.
This is really getting me down at the moment.
I can't stop scratching particulary at night when in bed.
Sue think's she's on a water bed going up and down LOL.
I've tried all sorts of creams and was given Chlorphenamine tablets at my last consultation but my skin is alive as if it was crawling with ants.
At least my bloods are doing well,PP's still falling and that's the main thing.
I've no doubt this will eventually pass and it can't happen soon enough for me.
Hope things are going well for you.

Keith.

[KeithH17Participant]

Hi Jim and good luck with your treatment.
Whatever you do don't become complacent where MM is concerned as it has a habit of coming back to bite you.
I was diagnosed in Nov 2007 had my first sct in May 2008 and now 3 months post 2nd transplant.
I had VAD the first time of which I had 4 cycles and Velcade 2nd time of which there were 8 cycles in all.
During both treatments I found that as I got further into it there was an accumulative effect which became very hard to deal with.
Fatigue was a major problem but I did get through it and when you do you'll find it all worthwhile.
It is very much an individual disease albeit with lots of simularities between patients.
I also had the inconvenience of multiple bone fractures but the RT did help.

Once again best of luck mate and come out the otherside fighting fit.

Keith.

[KeithH17Participant]

Hello Gina,I echo what's already been said with regards to your mum.
Have you asked for a second opinion?
Saying that there is nothing more they can do must be the hardest thing to have to accept and it may be worth seeking further advice?
Maybe there is'nt anything that can be done but it's worth a try.

Take care and my prayers are with you both.

Keith.

[KeithH17Participant]

Hi Debs can you tell me what's mean't by "very good partial remission" and how the Hospital can decide between that and complete remission?
Is it because your PP's are still showing albeit at a low level,mine are 2.00 g/l and still falling.
I did make Zero after my first sct and they stayed that way for 2yrs.
In other words is the criteria for CR Zero PP's?

Oh and by the way I ache like h#ll also,it's par for the course I guess.

Thank's Debs.

Keith.

[KeithH17Participant]

Hi John pleased to hear that Cecilia managed to get her Velcade via the Subcute route.
My veins collapse very easily and have always been a problem,and that's when they manage to find them.
During my recent treatment I ended up with phlebetic areas on my right arm where the veins had simply given up and it's very painful.
This way of injecting(when possible) should be universal so that we don't have to suffer the stress we do everytime we need to have a canula fitted which with this disease is on a regular basis.

Keith.

[KeithH17Participant]

Hi Debs hope you enjoy the London info meeting and that you learn alot from it.
I went to it in 2008 after my first sct and stayed a couple of nights at the White House Hotel which is just around the corner from the RCOP where the meeting was being held.
My passion is Photography and I took some shots around London but it rained most of the time so the London eye was off the menue.
The info-day was excellent and I gained alot of useful information from it in particular with regards to new treatments coming down the line.
I would have loved to have met you there Debs but unfortunately I can't make it this time but hopefully another time we will.
I see my Consultant 27th Oct for a review appointment to see how things are going.
I still itch like h*ll but the swelling on my arm is starting to settle down at long last.
My PP's are 2.55 and apart from the itching I'm ok.
I'm sure your appointment with the Doctor will check out ok and that you will continue to go from strength to strength.

Take care Debs and enjoy the meet.

Keith.

[KeithH17Participant]

Hi Debs and thank's for your reply.
Was your transplant an allo because I've never heard of GVHD been an issue with Auto sct's?
I had a very similar experience after my first sct and it cleared up after about 5wks.
Maybe it could be a reaction to blood and platelet transfusions, these being foreign bodies but I don't honestly know.

Take care Debs and I'm pleased you're doing well.

Keith.

[KeithH17Participant]

As a footnote to the above post I also have very itchy/dry eyes.
Has anyone else heard of this?

Keith.

[KeithH17Participant]

Dearest Min,I've only just read your post and I'm so sorry.
I just don't know what to say other than my thoughts are with you.

God Bless you…Keith.

[KeithH17Participant]

Thank-you for your replies,I had a Hickman line for my first sct with no problems putting in but lots of difficulties getting blood samples out of it and then it became infected towards the end and had to be cut out.
They always have trouble getting blood samples out of me,one problem being MM makes the blood thicken which does'nt help matters.
I asked at the time why they were using the back of my hand and was told it was the only vein that they could find?
IMO it's the luck of the draw,some can find them and some can't.
At my own hospital I'll only allow certain people to have a go but then they all know me and usually call in the experts soon as they see me LOL.

Keith.

[KeithH17Participant]

Hi Bridget,Sorry but I've just seen your post as I've not spent much time on the site lately still recovering from SCT.
Hope everything goes well with your RT and it gets rid of that horrible pain once and for all.
Let us know how things go.

Take care…Keith.

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