Hi Chris,
Just tuning in to give you a bit of moral support. Hope you are not feeling too rough. Sorry the time is dragging but hey no pain no gain. Soon to out and about again.We are thinking of you x
Take care
Vicki 🙂
Hi All
Thanks for the good wishes, and Tom like the new onwards and upwards…..will do our best!
One thing I dont get..when colin had the big chemo on Tuesday evening, when they did his neutrophil count Wednesday it went up!. I checked what his neutrophil was yesterday and it has only just dropped a little bit from something like 4.08 to 3.6 (this is almost beter than at home)?. I dont get how it works- if he has to wait for it to go to 0 we could be waiting ages. Any idea how it works- will it drop sharply? Im holding my breath waiting for the runny tummy etc but no sign yet. Can anyone remember when theirs started….Sweetcorn smell would diminish now I would think too?
Thnaks for any info. Trying to keep strong but cant believe how tiring it is sitting and watching someone sleep, and watching the telly! 🙂 Going to work as well so I guess I ought to give myself a little break 🙂
Take care all
Vicki
Rachel,
Not sure if you will get this and really sorry for a late reply. I don't look at the under 50s ever but it was something Dai said in a post that got me wondering. I was really shocked and upset when i realised it was outdoors paul. We are so so sorry. He posted some really helpful and positive comments when Colin was diagnosed. It was so helpful and he painted a lovely picture of what you guys got up to, even with myeloma in the background; cottages, walks, bike rides etc
We are so sorry
Vicki and Colin x
Hey chris,
Thanks for the good wishes and hope that things are going well for you. It seems you are being looked after well so that's good. Hope Lena is doing ok. It's hard work watching someone sleep you know!. I'm doing the same ha ha!
Colins neutrophil count went up(is that right) after the melphalan. Typical,considering he could,not mobilise for the stem cells before! Hope you are getting close to zero now so that you can start the big leap back up. It seems from other posts there is life after SCT you know!
Take care and tune in when you can to let us know how you are doing x
Vicki 🙂
Hi all,
Just catching up. At hospital with Colin as we speak. He has had the remainder of his stem cells returned today so all returned with no problems :-). The smell of sweetcorn is not as strong as I expected but still there and it does smell when I walk up the main ward! Our stem cell nurse Sian who helped with the return goes green every time ha ha!
Colin has felt a little off colour today and he said his tummy is starting to bubble a bit but so far so good.
Stephen, so pleased to hear you are making a good recovery and hope very much that you enjoyed Cyprus. It's hard to imagine that at the minute, sitting here in a hospital waiting for the runny tummy and sickness to start 🙁
Same to you Phil, hope you and the family are having a great time, not too much clubbing now!
David and Dai, thanks forthe good wishes and the advice. I feel very nervous about this whole thing, including when we come home.will remember what you have said. I guess it's the same as when colins neutrophils were 0.5 when he had an infection at home? Remembering issues with food and people with coughs and colds. Couldn't be a worse time now eh?
Sue thanks for the info, Colin says he feels mildly sickish and a bit of runny tummy (too much info):-). slightly worried as col was told not to both sucking lollies after so I really hope he doesn't get a bad mouth. We'll see. Any advice is greatly appreciated, and keep well all!
Vicki, on behalf of Colin, indisposed sleeping!
Hi Gill
Just wanted to add some support here. My partner Colin was diagnosed in October 2011 with one fracture to the T12 vertebrae,and off the richter scale light chains!, and a lower number paraprotein score. We were absolutely dumb struck as he had always been fit and healthy- even that year he had been ski-ing, golfing and we had two weeks in mexico kyaking, scuba diving etc.
Colins induction treatment was cyclophomasahide, dexamthazone ad revlimid. He had 7 cycles. He was very tired throughout, had sveral infections and it was a real mental battle. Not trying to pain a grim picture but trying to explain that it will be worth it. He started his transplant yesterday. It is a long hard road and each person is different, try making a note of symtoms etc so that each month you can discuss with your consultant. If we can be of any help at all please ask!
Vicki
Hi Polly
Just a little comment about the arm you have been randonmised on. All the drugs are good so dont worry. I remember asking my Doctor as I was worried that Colin would not tolerate 'this super drug' Revlimid and he explained how all the drugs are good and operate at a sufficient level to treat well…its just when they do trials they might think that some drugs are slightly better than another….maybe. So have faith on yours, there are many that have had it and its worked wonders.
Colin did not like the bone marrow aspirate, and I am sure like Tom he would have rather had no notice of what was coming!. Hope all goes well for you X
Vicki
Hi All,
well here goes, no going back now :-). Colin had his Melphelan this afternoon so that will start to knock his old unwanted bone marrow out now!. He is in good spirits but wondered just how many of those ice pops he had to suck on. He started two hours before!.
Yesterday was just a check over day, bloods etc. They wanted to insert a canula, but Colin reminded them he had a line in so no needles required thanks :-). After the chemo this afternoon and before it he had lots and lots, and more for good measure, fluid and has probably won the championship for passing water!
Expecting things to get tougher from now on, but at closer to himn coming home :-). Thanks for all the good wishes and thoughts- it helps so much. We'll have to update our picture because Ive certainly got more grey hairs, and well Colin had that anyway…..but will have less soon!! 🙂 Trying to keep the positive hat on as its hard not to worry on the drive home. Still who is it that says 'Onwrds and Upwards!'
Vicki
Hi Chris and Lena,
Just wanted to say Hi and hope that the SCT is going well. Hope those little cells are now starting to do their magic as your old, no longer required marrow disappears 🙂
Hope the runny tummy etc is not too bad. Post if you can. Colin is now underway so he's not too far behind 🙂
Vicki
Hi all
Thank you so much, and in particular like your description of the runny tummy Dai, made me laugh! By the way have you married your daughter off now? If so hope you enjoyed it!
Starting a new thread now. Needless to say minor hiccup this morning, rang up, no beds ahhhhhh! Almost nervous breakdown time for me. Had to wait an excruciating two hours, and yep we now have a bed. Into hospital for 2pm today 🙂
Roll on the 0.1 score!
Vicki And Colin x
Hi Peggy,
Colin my partner had gcsf injections to help his cells mobilise. It was only when that failed he had cyclophosmahide priming and gcsf together. I get the impression that gcsf is always involved, irrespective!
Good luck with your harvest x
Vicki and Colin x
Hey chris,
Im glad things are going ok, and you're feeling reasonable. Get that fluid in, I'm with Lena……Colin will tell you I nag him about drinking plenty (no not alcohol) :-), so will be on the same track as Lena!. Colin will be reading the posts too and will have the iPad in hospital to keep him in touch with the outside world!
Hey Tom, hope we can give you a run for your money, we'll see. Keep all crossed and roll on a month when we can start real recuperation!
Take care all. New thread will start tomorrow but don't want to tempt fate if no bed was available 🙁
Vicki and Colin x
Hi all,
Thanks very much for the kind words and advice. Getting all the gadgets ready and of course the list as per yours Helen. Hadn't thought of the lip salve so will get that! We're very much the waiting game now. We have to ring up at 0830 in the morning to make sure there is a bed…..that would be all we'd need!
Will keep you all posted on the new thread, here's to a months time, godwilling, back home and building up time begins 🙂
Stay well all
Vicki and Colin x
Hi Polly,
Sorry you've had to start treatment, but best to keep that mm under control. I'm like Eve, great at the theory but a complete whimp when it comes to taking any tablets!
Colin had to inject every day when he was on induction treatment. He was injecting something called fragmen. It worked for him, no clots :-). He disliked doing it but felt it was safer than me doing it…..bit clumsey me :-), not safe with a needle.
Good luck with your treatment 🙂
Vicki and Colin x
Hi chris,
Hope things are going ok….keep yourself occupied and counting the days till out.
No need to brag Tom, 3 years ahead indeed 🙂
We're getting a bit nervous now. Bits and pieces being charged up and gathered to keep Colin occupied whilst in hospital. I'll start a new thread for Colins SCT update as the other one is turning into war and peace!
Thanks for all the kind words and encouragement, roll on three weeks when hopefully Colin will be home again x
Vicki and Colin x
Ps hope the appointment went well ann and pete, is is it this weeks, confused.com! 🙂
