Hi Anne and Pete,
Well done on getting the 1.6 million cells, that is really good going when the readings were under the magic '10'! Mine were so low first day, 2 I think, I was barely off the start line! No cigar there for me. 🙂
Let us know what the Doc says, but remember that they will give you the best advice to get the most out of the transplant, it is a big undertaking, and you need the best chance of it working.
Don't be too upset if they advise you to go back for more collecting, because they won't bother with the chemo second time, and they may decide to give you the plerixafor which worked well for me. The point is that if you can harvest 4 million cells you have a standby for the future, and as Tom said, they had to give all of his mega dose in one hit, no wonder the jammy sod was out in record time! 😀
Have a great Christmas, and hope you hear soon from the Beacon.
I am feeling really well, plenty of energy, and looking forward to a couple of office parties and a few 'medicinal' beers! Need a Santa hat to keep the head warm though – no sign of hair yet!
Seasons Greetings to everyone!
Chris
HI Megan,
Glad to hear that Phils SCT is going well so far – the various drips seem endless, and sometimes I forgot whether I was attached or not!
Good luck with the next few days, I was very pleased when I was moved to a single room once the old blood counts dropped, you don't really want to chat when you are feeling grotty, and the loo is much more local!
Keep it up,
Chris
HI again, one other point about the stem cells, the collection isn't always successful, so the doctors don't usually fix dates until they have collected the right number, but once they have them bagged up they will crack on and book you in for the transplant within a few weeks, depending on work commitments and things.
It's best to look ahead just to the next stage, and spend as much time on the DIY as you can!
Keep warm!
Chris
HI Ann and Pete, hey I can claim the first reply on your new thread! Congrats on setting it up – the beginning indeed, but hopefully the end of your course of treatment 🙂
In answer to your questions, the GCSF shouldn't have too many effects, but Pete should start feeling some aching, maybe in the lower back and legs, my legs were really tired and I figured after that it was probably the injections, towards the end of the week.
Brave Pete shaving off the 'barnet'! As for the rest, I guess people are different, but my eyebrows stayed on, but some other hair fell off (not that I had a lot to start with!) but not all – probably enough information! 😀
I found the stem cell collection bearable, but not exactly fun. It was better on the second day when I knew more what to expect. I felt fine afterwards, a bit tired maybe, but I managed a family meal out after day 2, so it wasn't all bad! I am sure you will be fine for Christmas dinner.
I have an appointment at the Beacon on Friday too, 11.00, may even see you up there – I'm the one with no hair!
Hope all goes well this week for you both,
Chris and Lena
HI Ann,
Thanks for the post, no need to worry, I am doing fine considering it is only 2 and a half weeks since I came out of hospital! My taste has come back fine, and my mouth is ok again and I have plenty of energy, just takes a while to get going in the mornings. Have been to work a couple of days, and we went to 2 dinners over the weekend, so all going pretty well!
Really glad that Pete has made a start on his treatment, I hope he gets on ok this week, I expect he will feel a bit rough for a few days, but it will soon pass. Keep me in touch with the preparation for the Stem Cell collection, and feel free to ask any questions – have you started a thread on this site yet?
Good luck and let us know how you both get on this week,
Chris and Lena xx
Hi Vicky and Colin,
So pleased that you have finally got Colin home again, it is pretty overwhelming after being stuck in one clinical room for a month, not far short of being in prison really when there is no chance of escaping! I just loved being back under my own roof, but felt a bit vulnerable for a while.
I am sure you will pamper him, and get those cells really growing back at double speed!
I have been overdoing it a bit, and paid the price today with an aching back and went to sleep on the sofa at tea time, wondered what had happened when I woke up in the middle of Antiques Road Trip! My target is to put some weight back on, I lost 5kg's. Lenas cooking is fab, so I am tucking in as much as I can.
It's a great feeling knowing that the big treatment is behind you, I can hardly believe it, when for the last year it has been on my mind as as sort of mountain in the distance that has to be climbed.
Well done you two, it has been hard for you, but now we can all hope for a fast recovery and a long remission. 🙂
Best wishes from Chris and Lena xx
Ahh, thanks Ange, I feel quite humbled!
I'm not too sure what I can say now the exciting bit is over, but I am really pleased that the thread was helpful – mostly down to the other Club members comments I am sure, but Lena always reads the various progress reports, and I will try to stick my two-pennorth in if I can offer advice to others. It is a pretty scary journey for us all, and the more support we can get, the better.
All the very best for your journey, and an early 'Happy Christmas'!
Chris & Lena x
HI Vicky, So glad that Colin is improving and that they have got to the bottom of his pains, thats great! And you said he may be home tomorrow too, that is just brilliant, so pleased for you both.
I am absolutely fine, appetite really good, just as well as I lost about 5kg, and there is nothing of me! I'm stuffing in beer, chocolates, fish and chips and as much other food as I can!
Lena very happy, has her Granddaughter staying this weekend which she hasn't been able to do for weeks 🙂
Love, Chris and Lena.
Would be nice to get together once we are all back to normal after Chrismas?
Hi Anne and Pete, I am more than happy to offer a few words of 'wisdom', and feel quite honoured that you have asked, so please don't apologise because this is exactly what the forum is for.
You will probably be dealing with Dr Bolam who is charge of the transplants,, and is very well respected but can be a bit brief in his explanations!I quite like him. In Taunton they seem to favour giving a fairly big dose of chemo before the stam cell collection, to try to reduce the amount of cancer in the sample they collect, which is about 15% of your stem cells. This was the first time I lost my hair, so Pete be warned!. You will go into ward 9, probably in a shared room, and in my case I think I stayed for 2 nights. They will give you fluids on day 1, and in your case it sounds like they will put a line in (maybe chest) but I didn't have one until my actual transplant. On day 2 they will give you the chemo, and loads of fluids and stuff to flush it through as fast as possible – you will wee for England! Providing you are ok, you should then be able to go home to recover which does take a few days. My wife stayed with me for pretty much the whole time, but Ann, that is up to you, there is lot of lying around attached to a drip, but you can go to the day room, and there is free TV and wi-fi.
The injection they are taking about are the famous GCSF which is a mobilising drug which makes the stem cells come out your bone marrow into the blood, so they can be filtered out and collected in Bristol (Southmead). They will ask you to do this for about a week before the collection days, and you have to do it in the evenings because it peaks 12 hours later. It is quite easy to do, but I went to the GP's nurse to show me how to do the first one.
If you are lucky, this will enable them to collect enough cells, but be warned, it doesn't always work first time, and if you read my last 'story' 'Stem Cell collection second attempt' which is on page 4 of the Treatments section, back in September, you will see what I mean.
I am quite happy for you to phone me if you want a chat or to meet up, on 01823 270304.
I hope that helps, it makes it sound very complex, but taken one bit at a time it's fine. Really you are through the worst bit, as the cycles seemed to go on forever!
Hope you're safe from the floods!
Best wishes, Chris and Lena
HI Vicky,
glad to hear that the hospital are looking into the pains, I got the nurses to measure from my forearms a few times, or swap arms as they always used the right one ('it's what your right arm's for' do you remember that advert!) haha, where was I? Oh yes I was going to say that I was warned that 9 out of 10 patients get an infection, not from other people, but from your own bacteria in the tummy, mouth, line etc, so it's very common.
I hope Colin is better today, and will be home soon (even if by canoe!)
Chris and Lena x
I had my latest check up at Outpatients today, and we did have to be patient too!
The good news was that my neuts are up to 0.95, and they have cut most of my meds now! We celebrated with a pub lunch and a look at some of the flooding which has been bad round here.
I am feeling that things have really turned a corner and that we may have kicked Myeloma's butt! I have to go back in 3 weeks to see how my pp's are doing, so this long thread may be nearing its ending.
Thanks to everyone who has posted replies which has been a huge encouragement to me, and I hope my ramblings are of help to new Club members!
BFN, Chris.
HI Karen,
I think you will find it easier to prepare if you know what you are letting yourself in for! It sounds scary all at once, but taken one small step at a time it's much less daunting! It's soon over really in the scheme of things.
They said from the start that most patients have 6-8 cycles of CTD, and my pp's took a long time to reach the 'plateaux' that they look for, they did cut my chemo for a while as my np's were dipping too much. my pp's only came down to 17-20, but everyone is different.
I had none of the trembling which you are suffering – it must be a reaction to one of the meds, maybe the steroids?
Good luck and thanks for the reply,
Regards, Chris
Hi Kes,
I wanted to welcome you to the 'Club', as a fairly new member since last November myself and a similar age to you.
I am really pleased that you have found the site as it the best way of finding out what is happening to you from people going through exactly the same thing. The hospitals are limited in the general help they give, and from the sound of what you have said they have given you the treatments without much overall guidance, much like I found.
My wife has been much more active in digging out information, and finding this site, much more than me (typical head in the sand bloke), and it sounds as if you would be much less isolated if your husband is more aware of what you are going through, maybe you could both go to the GP or the hospital (sorry if I am wrong on that one).
Your symptoms are much like mine, painful ribs, back, shoulders, which got cripplingly bad a couple of months after I was diagnosed.
I had 8 cycles of the same drugs as you, with a bit less Thalidomide, but once I was mobile again I carried on working and socialising. You will find that once you have finished the cycles you will feel 100% better! The worst thing I found was the constipation and loss of appetite.
The story of my recent SCT is under the heading 'Treatment'.
I have tried to carry on with normal life as much as possible, and fit the hospital stuff around my life, and not the other way round, if that makes sense!
I was pretty emotional at first, as it is a mortally serious business, and difficult to come to terms with, but although at first I thought 'whats the point of working', in fact you can cut down work to a sensible level and gain a lot from the genuine kindness that people constantly surprise me with. It is tough on my kids too, and takes a while to adjust, but I am determined to see my daughter down the aisle, and collect the bloody state pension I have paid into for so long!
I see that a lot of the 'regular contributors' have posted replies to you, they are all brave and fantastic people to have on your side, and you can ask all those things that may confuse you.
Sorry if my brief note has turned into a tome, but I wish you every success with your treatment,
Keep smiling!
Chris (and Lena)
HI Vicky, I have put a reply on your Blog,
Chris
Hi Vicky, so sorry to hear about the false start on Tuesday, you must have been so upset having finally got him home! Colins sickness may well have been the temperature – a few months ago my temp suddenly shot up and I was really sick and ended up in the hospital. Definately sounds like withdrawal from the hospital food LOL!
Poor chap really is going through the mill, I did pick up an infection, but almost immediately afer the new cells, so I was having tons of antibiotics in my 3rd week which soon did the trick and got the temp down, but they kept them up for 7 days to be sure.
Touch wood (or bald head!) I have been ok so far – no visitors so far, but I have ventured out, watched by hawk-eye Lena, a few times for fresh air, and drove the car a few yards today before getting stuck in the storm induced traffic jam, then went home!
Regards the arm pain, I put some of this down to the hundreds of blood pressure tests which squeeze pretty hard on my poor thin arms. It has been much better since I have been home, just some shoulder aching which I usually have, so I take a small dose of Oxycontin each day.
I hope Colin gets his good behaviour release very soon, sounds like he is nearly there!
Keep smiling, it must be very tough for you, Lena is desparate to hear that you can both be at home with your comforts around you, it really makes a difference.
Chris and Lena xx
