[JetParticipant]

Thanks Min, Clara and everyone for the positive comments about my bald head. I really like it… who knows, maybe I'll keep it that way for while. Just wish the weather would improve enough to need the sun cream instead of a hat. Brrr…

Alos, thanks for clarifying about the GCSF injections. They don't bother me at all and my friend is now quite confident and proficient at giving them, so if they're prescribed, that's fine. 🙂

[JetParticipant]

Hi Clara

What I've been told, even at the worst really doesn't sound too bad – a few days of POSSIBLY feeling really lousy, plus a few weeks of tiredness and some months of being careful and quite tired, to get a possible extra 5-10 years. Well, I'm already easily tired and back-achey and I had a month (pre-diagnosis) of feeling really lousy and no appetite, so while I'm not looking forward to that bit, I know I can get through it and come out the other side.

62 is quite young still, but I guess it depends how fit your dad is. And none of us know how we'll respond to the high dose chemo. I barely noticed the milder chemo pre-stem cell collection, despite it making my hair come out. So, while I've been advised how bad it might be, I'm prepared to just go for it and see what happens. Obviously I'm hoping it'll be an easy journey, but if it's not, then it's not, but it's not forever and it will pass.

I know I'm quite a young person to have myeloma, so the doctors didn't talk about considering it – it was just offered/expected even right from the point of diagnosis. I know I could have said no at any point, but on consideration and the fact that it's considered the gold standard treatment currently, it seems worth doing.

To give you some hope and it's something I often think about when I get a bit scared/nervous, a friend of mine's mum, who is now 75, had a stem cell transplant – one of the earliest ones – about 10 years ago (so she was 65 at the time) and is not only still alive, but well and very active, writing for the university and doing all sorts of physically demanding creative stuff.

Anyway, I hope that's useful food for thought.
I wish your dad well whatever treatment he chooses to take.
Jet x

[JetParticipant]

Thanks Mavis

I really appreciate your compliments. And don't worry about the blog, it'll probably be my main activity while I'm so tired, unless I feel too awful to write.

Jet x

[JetParticipant]

Hi Phil

Thanks for responding. It's so good to hear a number of experiences. Yours sounds more like the one my specialist nurse mentioned, which I think may be more common than Min's partner, Peter. Ho hum…

I'm also on the Myeloma XI trial and to be honest, I'm more worried about being randomised to take Revlimid after the SCT than the SCT itself. I didn't get on well with it in the initial phase of treatment – loss of taste and therefore appetite as well as it making me very tired and low. But they've said if I do get it, and I do have the same side effects, they can reduce the dose or if all else fails, I can stop using it and come off the trial. I reckon a long life where you feel lousy because you can't enjoy food may not be better than a shorter one feeling better, but we'll see.

Good luck and best wishes for the future
Jet x

[JetParticipant]

Hi Debs

Where are you at with the STC? Are you undergoing it right now? I do hope it's going well for you.
My thoughts are with you.

Jet x

[eveParticipant]

Hi Jet
I wish you all the luck in the world,it is good to see someone doing so well,
as you know from post some people struggle, when you are in this position it is not very nice!!!!!.
There is an old saying (who wants to live till there 90,the person who is 89) so I do not think it is different what ever your age,I think you are very lucky!!!
Eve

[KeithH17Participant]

Hi Jet,I've only just read your post and the excellent advice you've had.
I go in for my 2nd SCT on 2nd Aug same date as yourself.
It's true that everyone reacts different to the drugs and recovery times do vary.
I had my first one in May 2008 which lasted 2yrs 4mths before I relapsed last year and then had 8 cycles of Velcade which started Jan 2011 to prepare me for the 2nd transplant.
I went home the same day but was back in hospital after a week and spent a further week in an isolation ward.
I took lots of antibiotics for infections and needed blood and platelet transfusions.
When I came out I felt very weak and needed 2-3 months before I started to feel more like myself.
It's a slow process which has to take it's time but you will come through it and feel much better.
The end result is more than worth what we have to endure to get there.

Best of luck Jet and don't forget to suck the ice-cubes for 30mins before and for 30mins after the Melphalan to prevent those horrible ulcers.

Keith.

[comfortablynumbParticipant]

Nutshell reply…

Felt very rough from about two days after stem cell transplant. Sickness. Not wanting to eat. Tired.

Went home feeling weak, tired and sick.

Felt better about four months after stem cell transplant.

Been feeling better than ever since then (18 months).

CN

[JetParticipant]

Thanks CN! Superbly succinct response. 🙂

[DaiCroParticipant]

All the very best for Monday Jet… once it is under way you will find your rhythm and measure and your coping mechanisms.

Internet connection is free, you just ask for the current code (the network in Fletcher is 'Netgear'). You will be well settled… post mephalan, stem cells returned etc., before you have to start 'coping'… I know it sounds cliched but the best advice I can offer is 'Go with the flow'… your flow, at your pace.

Try and stay in touch when you feel up to it.:-)

Dai.

[BADGERParticipant]

Hello Jet

i also cannot give you any info about SCT as i havn't had one either but I will be thinking about you with fingers crossed for monday

GOOD LUCK and a big (((((hug))))

Love Jo xx;-) 😉

[ElizellenParticipant]

I shall be thinking of you tomorrow too, Jet, and wishing you an uneventful stay in hospital

Eliz
XX
X

[shirleyParticipant]

Hi Jet,i've had 2 sct,my first one was autograph,and boy was i poorly,i was in hospital for 3weeks,and man was i poorly,lost my appetite,had s&d quite bad,i slept alot,towards the end of my 3weeks i just wanted to be left alone,i cried,because i felt i couldn't take anymore,my poor husband went home quite flat,but when he turned up the next day i was a totally differant person,i'll be honest its a very emotional experience to go through,but i did it,i had my 2nd sct at xmas just gone and i had an allograph,using my sister's stem cells,i sailed through this one,wasn't as poorly as the first,but still had sickness and diarrhea,it did leave me with mild depression,i was very tearful, again i lost my appetite,and that took a good few weeks to come back,i'm now in remission and doing really well,please don't go worrying about it,you'll be fine,and i do wish you alot of luck,and hope all goes well for you,the procedure itself is painless,good luck and best wishes Shirls x x

[HelenParticipant]

Good luck Jet
I'll be thinking of you over the next few weeks,
Helen

[RogerParticipant]

Good luck tomorrow. I am sure that you will sail through the process. I do recommend that you take plenty of clean PJs though.

I had my SCT 19 months ago. The first week was toughish – diarrhea, sickness, loss of appetite, hair loss – all the usual stuff. However I had no mouth ulcers or infections. From then on things looked up. I was in hospital for just 2 weeks and then was sent home.

I was quite weak at first, but with two dog, I worked hard to get out and about with them. Starting slowly using my wife's mobility scooter, within 4-6 months I was walking the dogs 4-6 miles a day.

So good luck. I am sure that after the first week, things will get better day by day. Chase the nurses to give you your blood counts every morning. Seeing your WBC count climbing day by day is so encouring and you'll know that you'll soon be home.:-)

Cheers, Roger

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