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Stuart 11 years, 10 months ago.
Hi Vicki, Have a look at my "Musings from Ward 9". Click on Treatment, scroll down to the bottom and click on page 3, you should find it on there.
Kindest reagards
David
Dai,
This latest post just about sums everything up. It made me feel such a mix of emotions, but I can tell that the post came from the heart. Thank you so much. I am sure we will ask lots of questions to both the medical team and you 'fellow mm'ers.
For today we will try to have a 'normal' day and ponder some more later x
David (perky mite), Stephen has already recommended your musings so I will take you and him up on that offer
Best wishes
Vicki and Colin x:-)
Hi Vicki
Just read through all the comments about SCT, how helpful and supportive, it must have made both you and Colin feel so much brighter!
How are you both?
Good news here, Pete had his heart tests yesterday, no problems at all, what a relief, at least only got the myeloma to worry about!!!! That surely is enough on its own. The breathlessness is apparently associated to the Myeloma.
Pete had his monthly consultation today and they are very pleased with his blood counts and they expect to get him in for SCT before the end of the year!! (Pete's sense of humour – he said, "well at least it will get me out of the Xmas shopping")!!!! No, joking aside he is obviously very apprensive, like you and Colin.
Like you, really shocked!! Did'nt really think that anything would happen before next year. It has helped me enormously reading all the postive comments on your thread!!
Pete is feeling brighter, still has discomfort at the top of his spine,but he can cope with that. The consultant even commented that he looked so much better today as well. He also answered all Pete's queries, ie bulge on his stomach, taste buds, constipation etc, albiet, these questions have been answered on this site. What would we do without it eh!
Mind you, Pete is grumpy tonight,he has been at home this afternoon trying to get travel insurance for us to get 7 days away in Spain in the next couple of weeks. We both knew it would be expensive, but he was quoted £500.00 for a one off trip. He is desparate to get some sun, and so we may have to 'bite the bullet' and pay up. I think he deserves a good break and some blooming sunshine!!
Let me know all your news
Take care, speak soon
Ann and Pete
xx
Hi ann and Peter,
Very glad to hear that the heart problem has turned out to be a non problem, like you say one less thing to worry about!. Colin had a lot of breathlessness and lethargy. I'm sure as the treatment moves on he will get better in that regard. That says Colin manages to go to work at least 3 times in a week at the moment, either part or full days but he is absolutely shattered when he gets back home. Asleep in the chair at the moment!. I get the feeling his taste buds are returning as he said he really enjoyed his meal tonight.
We were gobsmacked when they told us about SCT but that said Colin did say that he felt a bit calmer about it tonight, aided by all the wonderful posts, Stephens outline on stem cell harvest and the musings from ward 9. It was also good to hear it from all the 'horses mouths', Dai, Andy, Helen and also from Eve in relation to slims very recent experience. Very pleased to hear you guys are also heading that way. May be we can all start 2013 with a clean slate, for as long as possible. Also glad to hear that the consultant was able to put your mind at rest and answer all your questions.
Not surprised Peres grumpy with that travel insurance price. I think the days are long gone are the days when we can get worldwide annual trip for £25. Still good on you for going, we have not been out of the county yet……but we might be having an excursion somewhere in the uk in the next 6 weeks. Good luck with it if you do go, and have a relaxing time. It will do you good too.
Colin asked me to shave all his hair off before he goes into hospital for SCT……not sure I can do that. I am hoping he'll go to the barbers! Keep us posted.:-)
Best wishes Vicki and Colin x
Hi Vickie and Colin,
Following your thread reminds me of many of the ups and downs and the uncertainties of the journey from being ill, to diagnosis and then on to primary treatment and from there to the STC route.
Going from being desperately ill (in hindsight) then feeling better(ish) and able to function to some extent despite the effects of the meds and then on to STC.
My consultant and haematology team were very supportive and told me what I needed to know, I think, and on that basis I went along with their advice.
However, I went from someone, who like the majority I suspect,went from being content to know that blood is a red fluid that carries oxygen around the body and does a few other clever things to the realisation that our blood is phenomenally complex and an organ in it's own right and completely beyond any meaningful understanding of its workings by most of us.
I try, I really do, to read and understand what its all about but when I think I understand something, the other bits I thought I understood just slide away beyond my recall.
Nothing is done to us without our informed consent but in reality we have to go along with the recommendations of our professionals.
What will be will be.
STC can be terrible and is for some, also its not too bad for others.
I decided to just take things as they came and deal with them as best I could with no expectations. Like making a parachute jump, you have to trust that parachutes work and do it. Not be brave but stoical, just get on with it and I tried ignore the present as much as I could and think about the future knowing the World would be a better place when it was all over, and it was even better than I had hoped.
I think what I'm trying to say is this. If Colin has decided to go for a STC his best course of action might be to think positively and go along for the ride, trust his professionals and accept that the odds are in his favour to come out at the other end of in a much better state than when he started.
Be happy, don't worry.
Andy
/ Vicki and Colin and others
Hope all goes well whatever your decision. Logged in tonight because I'm going in for SCT on Monday. I've set up a blog at http://pennylawson.blog.co.uk and anyone on here is welcome to follow it, hoping to update it when i can for a blow by blow account of how I get on! Feeling well and strong so here goes..
Penny
Hi Vicky/Colin
I had my first SCT May 2008 and got a CR with zero PP's and 2yrs 4mths remission before relapse.
Then second SCT August 2011 which only lasted 8mths before I again relapsed and have now just started on Revlimid and Dex for an indefinite period as long as it's working.
When I had my first harvest there were enough cells for 2 transplants so I was lucky to get a second bite of the cherry although the second time was never as good as the first remission duration or quality of life.
Most if not all has already been said about transplants so I won't go over old ground.
Is it worth it? I'll say it is, my first one was no picnic and I still went back for a second one.
I was also told the worse case scenario but I thought 2 deaths out of 850 wasn't a bad record.
Then there's all the possible side effects but you should just look on the bright side and be positive because it won't happen to you with a bit of luck.
Some say they breeze though it,well I didn't but I still say go for it because it's still the best way of protecting your remission and thereby staying well.
Second SCT's are another thing,they are quite rare and usually don't last as long although even this is not always the case because of the individuality of the patient and disease.
And if after all of this waffle you are still unsure listen to the experts and they will tell you the SCT route is by far the best way to go.
Best of luck with lot's of good health.
Keith.
Hi Penny
Just wanted to wish you all the best for Monday and your SCT.
The procedure itself is very quick and simple but the high dose Melphalan does knock the stuffing out of
you because it wipes out your Bone Marrow ready for the new Cells to rescue making new Bone Marrow.
The 10-14 days post SCT are the worst and anyone who says otherwise is kidding themselves.
Get ready to feel rotten for most of this period because this is when your blood counts are dropping like
a stone and there's no way you can be feeling well at this point but the good news is once you get past
the 10 days they will start to rise pretty quickly and with blood and platelet transfusions to kickstart
things you will soon start to feel stronger and well again and more importantly start eating and drinking.
Both of my SCT's were more of less the same apart from the e-coli I contacted due to my low bloods.
Infection is the main bug bare and I'm afraid no matter how careful you are you will get at least one so
the first instance you notice your temperature hitting 38 it's straight onto your Hospital and no delay.
And don't forget the ice cubes 30 mins before and after the Melphalan to prevent the mouth problems.
It does really work as the nurses will no doubt tell you.
This I hope will help you too Vicki and Colin.
Best of luck to all.
Keith.
Hi Penny
Just wishing you the best of luck for Monday and your SCT.
Thankyou for deciding to do a blog as im sure it will help others about to go through the same thing.
My Mum is in 3/7/12 for the Hickman line to be fitted and the process to begin, so shes not far behind you.
Kind Regards Alison x
Hi Penny,
Nottingham City Hospital supplied my ice by way of those long fruit flavoured icicle pops… and they were tasty and efficacious… I'd make an enquiry if I was you and if the ice offered is by way os standard cubes I'd grab a hafl-dozen ice pops.:-D 😎
Dai.
Dear Ann
Did you try World First insurance, it's on the list through the site, I travelled to France between harvest and transplant and recently to New Zealand less than 200 each time, wasn't on chemo but was on revlimid. It's worth a look if the docs say he's fit to travel
Love Helen
Hi all,
David perky mite, read your musings. That is so helpful and in a lot of ways reassuring
Keith, thanks for your post. As I have said before it's good to hear it from people who have been there. I will also try to remember the tips like ice lollies, I also recall from somewhere that pineapple is also good. Sorry that you did not get a longer remission but I can see from this site that there are leaps and bounds in treatment and I am confident that that isreali vaccine (I think) will come up trumps and be the cure all! Good luck with your next phase of treatment.
Penny, good luck for Monday. Will keep an eye on your blog. I hope all goes well and you will have a smooth passage through the choppy SCT waters!
Andy, I know what you mean about the understanding and reading it all. I thought I held the Olympic, no world! Record, for reading every website and information I could find. At work they call me Dr Meek!!, sometimes a little knowledge is a dangerous thing and of course this blood thingy is very complicated, as you say, how many times to read it! Your positivity is to be admired, as I do all of the fellow sufferers who deal with this unpredictable condition with vim and vigour.
Ali, I hope all goes well with your mum. Keep us posted.
Hope I haven't forgotten anyone with this general post. If I have sorry, but I can assure you I have read everything you put in……more than one! Subconsciously I think we both know which way we are going with this; we bought some new jim jams for hospital so I think that's it all bar the shouting, and worrying, and questions ha ha!
Best wishes to all.
A little info on a lighter note, have not been out for a while so am going to a fashion show tonight in aid of cancer research so might treat myself to – little something! 🙂
Vicki
Hi Helen,
Do you have much bone damage? Extensive bone damage seems to be the biggest drawback to insurance companies (and consultants). I have been quoted from 350 to 600 for a return flight to Barcelona… + a clearance letter from the senior consultant of my hospital.:-(
It will be cheaper to go to Portsmouth and take the ferry to Santander or Bilbao and then take a 6 hour journey across the mountains to the east coast. More fun too I'll wager.:-)
Dai.
Hi Dai
No I don't have significant bone damage. In fact I have no back pain to speak of since my SCT. I don't remember all the questions I was asked but I don't recall that being specified, unless it was in the radiotherapy or operations section?
Love Helen
Hi Penny
All the best with your SCT on Monday I have logged onto your Blog ((((I think )) good luck in the road to remission 😀 and ghope its as smooth as mine 😎
Love and Loads of (((((HUGS))))
Tom "Onwards and Upwards" xxxx
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