This topic contains 16 replies, has 11 voices, and was last updated by 
Nettie 12 years, 7 months ago.
Hi
As there seems to be a very limited number of other myeloma patients here in Highland, and even fewer medical professionals with experience of treating younger ones, I'm hoping this might be a way to hear some first hand stories and advice.
I'm 44,diagnosed last Nov and have been on CDT since then. I've responded really well and really haven't suffered much, feeling fine now, working part time and quite fit and active, main frustration is 'chemohead'!I'm now ready to have high dose chemo/stem cell transplant in Aberdeen. Can anyone who has been through this tell me how much of an impact it has? i know I'll be in hospital for at least 2 weeks, but how long before I'll feel fit again, get back to work etc? Trying to plan family life and work for the rest of the year but its so hard to know what is realistic.
Great to see so much positivity on here – what a fantastic resource.
Thanks
Penny
Hi Penny
It's really hard to describe this procedure, no one wants to put you off, but as it is still the best hope for longer remission especially for the younger age group, i felt i just had to get on with it. I'm sure you have read some of our stories and know how different it is for everyone.
It is unpleasant to go through, terrible sickness and diarrhoea for many days, but it is time limited, about days 5-10 are the worse, both for you and your family who can only watch and hope you are going to be all right. It is hard to be in hospital too, the staff have seen so many of us all pretty much as ill as each other so they do not seem to worry much about us. Risk of infection is very high when your immune system is down. After you get home it's a case of eating and exercising and being chronically tired for weeks. Be prepared for the long haul, your mood will be all over the place – up one day down the next -you have to fight to stay positive some days.
Listen to your body, it is very clever at telling you to rest when you need to rest and tell the medics if it feels wrong, then they can fix it. I'm constantly surprised in all of this at just how tough our bodies can be, and how they mend.
I'm now 6 months post sct, had a lot of post transplant infections but now I'm really good for a few hours every day then I get tired as the days wear on. I hope to be back to work soon but know I'm not ready yet.
Hope this helps, every one else will probably have a different take on it, this is mine and it is a personal journey for all of us.
Good luck with yours, when is it?
Helen
Hi Penny, Firstly Welcome(?) to our site. As you say bags of information on here and the good news is it is all up to date.
You will hear this many times I am afraid but Myeloma is a very individual decease and it attacks everybody slightly differently and of course your health, fitness etc.. all come into the equation of what happens. None of which helps you a lot!!
Unless I missed it you did not say whether you had had your Stem Cell Harvest. If you have not that is quite a painless operation. You are fixed up on a machine with needles in both arms and your blood is circulated through the machine and the Stem Cells are extracted. However prior to this you do have to have injections of a drug to stimulate the growth of Stem Cells and this can give you a lot of Bone Pain, which is not pleasant but does not last long. I found a hot water bottle placed on the area helped.
When you are admitted to hospital for the SCT you are given drugs that attempt to kill all the Myeloma, unfortunately it also kills off all fast growing cells, hence the loss of hair. It can do a lot of damage to the throat, mouth and stomach and these are the areas that will give you problems. I had a very bad sore throat but my mouth and stomach were not too bad. You will lose all sense of taste and everything tastes foul, even water, and your appetite will not be good. The actual Stem Cell transfer is again painless a drip is attached to your arm and your stem Cells are slowly reintroduced to your body. Then is the wait for your Neutrophils to rebuild themselves from your re-introduced Stem Cells. And that basically is that. I had my SCT over 1 year ago, so if I have forgotten anything I am sure someone will post.
I wish you the very best of luck it is worth the effort ? stay positive.
Kindest regards ? Vasbyte
David
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Hi, Penny, Sorry that you are looking at a SCT at all, but if it's any encouragement, I've had 2 SCTs in Aberdeen in 2006 and 2009, and I'm still around to cause trouble. We live 65 miles from the hospital and that was and is a major issue, especially as my husband feels he needs to see me daily. I was in for 4 weeks the first time round and 6 the second, because of delays over the Hickman line. I find the staff hugely caring, capable and efficient, but also cautious in the early release stakes because of the distances involved. As to the recovery time, it seems to be a bit like asking how long is a piece of string. All the best anyway.
Dear Penny,
I also live in the Highlands and I've had a transplant. If you'd like to speak to me please email me on evayouren@lineone.net and we can arrange to phone each other.
I'd be happy to tell you about the experience.
Eva
A big thank you to all of you for sharing your SCT stories, great to hear first hand experiences and it sounds like you've all been through a lot and come out smiling, mainly at least. I'm going to Aberdeen for the first time to discuss it on 28th Feb, so at the very early stages, but although I've known this was on the cards its only now that the reality is dawning on me. Also trying to work out how to fit work and family life (our kids are 9 and 11) round being out of action for a chunk of time. But I'm grateful for plenty of support from family and employer, plus being pretty fit and strong despite the myeloma – I've got off lightly I think.
You sound good to go Penny – Vasbyte.
Kindest regards
David
Hi Penny
I am one of those lucky ones who had almost no problems during my SCT proceedure, so it is not inevitable for you to get sore throat, and diarrhoea, you might be like me and sail through with nothing much in the way of nasty side effects.
During my stem cell return I was told to suck ice lollies which was supposed to minimise the mouth/throat etc problems, and the ward had a stash of ice pops and lollies which I duly worked my way through while watching my cells drip into me.
AS to how you might feel about getting back to work post SCT, if I had not got disintegrated vertebra resulting in pain when standing and walking (which was the reason for seeing the doctor and getting diagnosed) I think I would have been fine to carry on working about a month after treatment once I got my energy back.
I was a good bit older than you are (60) so I hope your yuunger body and fitness level helps buoy you up throughout your hospital stay.
Wishing you an uneventful hospital experience when it happens
Love from
Elizabeth
XX
X
Elizabeth, thank you so much for your post, yours is exactly the type of story I need to hear. It does seem true that there is a huge variety in the way people are affected by SCT, but great to know not everyone has a hard time. Glad you 'sailed through', hope your back problems are improving now too. I am working on getting as fit and healthy as I can just now so I'm strong before going in to hospital.
Hi Penny
don't know if this will help, but here is link to a blog we did for my wife. We did it originally as a way of keeping all her friends informed about her progress. Go to January 2009 for her day by day SCT experience.
http://julesatthemarsden.blogspot.com
Best Wishes
Stuart
Stuart and Jules, thank you for directing me to your blog. It's great, lovely pics as well as very interesting first hand account. Glad it all went so well, hope you are still doing fine. Still waiting to find out how soon I can get my SCT, but when I do I'll use you as a role model!
All the best
Penny
Hi Penny,
My husband had a SCT in Dec 2007 and much like Elizabeth sailed through and did not suffer with either sore throat and diarrohea. His main suffering was due to boredom!! Patrick was up and running in about four weeks.
Best wishes to you
Tina
Hi penny how did it go yesterday. Any date for SCT. I was also a lucky one. They kept telling me I was boring 🙂 no infection, one bout of diarrhoea, one bout of sickness and home in two weeks. I was also quite fit when I went in and 46 years old. I think it helps. Good luck and keep in touch kay x
Tina and Kay
Great to hear more good rerports of SCTs, thanks. Had a good chat with folk at Aberdeen, nice caring people. My cell collection date is 20th April, transplant late June/early July?? Just want to get on with it now. Would you normally carry on with CDT chemo in between collection and SCT? I've heard different stories, but I would REALLY like a break from the drugs!
Penny
Everyone is different. It will be up to your consultant. But whatever they say they know what they are doing and it will be for the best. Have another chat with them and ask the question. I just wrote down questions as they popped into my head. There is light at the end of the tunnel now. Best wishes kay x
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