Hi chloe and dad,
Welcome, sorry i can't help you with detail re mini transplant but can tell you this forum is a godsend. There is always someone that can offer advice and support 🙂
Vicki and Colin x
Hi angie,
Hope your SCT goes well. My partner was diagnosed in October 2011, and we have a date for SCT. Like you he and I am apprehensive, but the medical teams really do know their stuff. Colins first harvest failed so we are hoping this next go works…..re your hip replacement not sure how it works when myeloma is involved but my uncle, who does not have myeloma, did have a hip replacement and whilst it was painful for a while during recovery it has now given him a new lease of life……so once the mm is under control you'll be leaping about in no time. 🙂
Vicki and Colin
Hi Ali,
Just catching up to see how your all doing. Sorry to hear about your mums thrombosis but hey….she's home, and even been doing a little bit of lunch. Wow.it's at least in her own familiar environment. Bet your dads pleased too.
It's easy to forget those who was watching this, and you having a young family to bring up as well. Still mum will be better soon and hopefully have a few hours spare to spend time with the grandchildren to give you a break. I know we all support our family to the hilt, but there is an odd time needed for ourselves. (that said I don't practise what I preach).
Slow but sure improvement is the name of the game I guess,
Vicki and Colin…..we are at hospital tomorrow to find out what plan b, or is it c, is!
Wendy
Just caught up with the thread! Result, so pleased for you……when is the marathon going to be then! Get on with that holiday now then. No apologies for over reactions necessary……you haven't seen my ones, and I'm doing those on behalf of Colin. There has been times when he's needed to get ME under control LOL
Vicki
Hi ann and Peter,
No news on the funding, we think that it is very unlikely. We will know what the next plan is when we go to the hospital on Monday 20th. We aren't sure what this appointment in for though a the pa wasn't sure when we asked! We are assuming it's to tell us when the next harvest dates are…..hopefully.
Colin has been off treatment for about 8 weeks now (I think they stop it when it's getting near to SCT/treatment plateau ing. Overall Colin has had a few spells when he has felt really really tired, but this week, touchwood seems to have bounded back and been full of beans……even talking about doing so DIY (painting and decorating)' but I think that's a bit ambitious. However he usually has his way…..ha ha, and I am trying to stop treating him like an invalid.(which he is not and is really quite active). I don't think/hope he will be delayed too much longer. Ali's mum had to wait from April to august I think.
Not sure about the small doses of radiotherapy. Colin had one big blast at the start. Colins main concern is posture with his back. Amazingly he has lost about 4 inches in height!. He finds that very upsetting. I do wonder whether part of it is posture, bearing in mind his original back condition which brought about this diagnosis has yet to be solved.
Colin did not have any swelling problems but I am sure that was a side effect that I read about. It must be a right pain for Peter not to be able to get a good nights sleep, that helps all of us. Colins Taste buds are still funny, he used to low chilli and is now right off it. He was well into cake, but has now moved onto cereals, and he isn't even on treatment!
I know what you mean, this condition is very individual….but everyone's experiences o the forum helps. I hope that your appointment goes well o. Tuesday, keep us posted. I had wondered what you were up to. I won't say don't worry, because I do too, its just how much varies!
Have a great weekend, 🙂
Vicki and Colin x
Ali and mum,
So, so,so pleased for you all. I know it's take it easy and a bit at a time, but let's hope this is, to quote Tom, onwards and upwards. It's good to hear that your mum is eating s bit and sore mouth held at bay. It was so kind of you to think of us Ali, with the mouth wash, despite all that has gone on in the last few weeks (thanks so much).
I'm sure your mum will come on leaps and bounds being at home, with normalness (is that a word?),around her. Keep us posted if you have time……by the way your dad sounds a star too, and will be a big hit with the nurses, taking cakes in 🙂
Vicki and Colin x
Hi Mavis
Thanks for this. He seems to have perked up a bit over the last few days, and especially the last couple. It's hard not to think that every pain is myeloma isn't it! I wonder if that fear will ever go away! We are awaiting a hospital visit Monday to see what happens next. The original SCT was due this week but due to stem cell harvest first go failing we are waiting to see what plan b is.
I hope they soon get your teeth sorted so that you can enjoy the better tasting food!
Keep well 🙂
Vicki and Colin x
Hi Ali
Just wondering if d day happened and your mums home? Hope so as that's when the real recovery begins. Fingers crossed and all the best
Vicki and Colin x
Hi Tina,
Colin has been off treatment for about 8weeks waiting for SCT. He has been very tired at times (I put a post on about fatigue is this normal). I thought that he would have bounced back quicker but like the others have said your body takes a battering with this blunt instrument called chemo. Colins' tiredness has gone in peaks and troughs. Over the weekend he was very tired but over the last couple of days has really perked up….so based on our limited experience reckon that's normal
Keep your chin up!
Vicki and Colin 🙂
Hi Ali,
Your mums doing a stormer, well done. The time seems to have flown by, but not for you guys. I know what you mean about worrying about things 'happening' at night or out of hours. They always seem to lol! Never mind.
I hope your mum is still on the up and it's amazing that she might be out thursday. Go on her, she's a real star. It must be hard for you guys but doing all the right things….including the cleaning!
We had a false start with colins SCT, I doubt they are going to fund the booster injections so we are plan c, visit to the hospital next Monday! We were all up and ready but now have to start again. That said it's good to hear the good news stories like your mums. I'm sure the grand children will help to perk her up and get her better in no time.
Go team ali's mum 🙂
Vicki and Colin x
Hi bill,
Welcome to the forum…..you say you are 41, there seems to be a higher incidence of young people getting this condition! My partner Colin is not as young as you but he's gone through the myeloma 11 trial and is awaiting his SCT dates. I won't say it has been easy in any shape or form, but the medical teams are well clued up on the various options, and that together with this forum really helps. As colins partner it is hard to stand by sometimes and feel helpless, so perhaps this site will help your partner too,
Best of luck
Vicki and Colin x
Hi Charlie,
Glad to hear things are going ok. Forgot to say,Colin had loads of hiccups when he was taking dex. Tried all sorts. Wished we spotted the option with taking yoghurt! Glad you are coping ok. Any questions please ask…..we are still awaiting colins new SCT dates!
Keep on going 🙂
Vicki and Colin x
Hi all,
Thanks very much for your encouraging posts! And Helen…..happy first anniversary!
It's really good to hear from you guys that have been there. I did not realise that the fatigue would carry on, but then I suppose the blunt instrument of chemotherapy takes a bit of getting over. It has been quite a busy week as it was my mums special birthday so we'd arranged a surprise party (last night) and a meal last Tuesday which thankfully Colin has been able to come to. I suppose that and work can tire you out. Do you know what I would carry every shopping bag, cut every hedge, clean not stop…..as long as colins still here to enjoy it! I think like you say Helen he gets frustrated because he has been used to doing sport and being annoyingly good at it, being very active, lifting and shifting things…..and then down with a bump not being able to lift shopping bags. Easy for me to say I don't mind if he never lifts anything again, but it's all about Colin wanting to be 'back to normal'.
Thanks again to all……we should hear in the next couple of days whether those booster injections for the gcsf has been funded. Have a great weekend all, summer over we are having a huge thunderstorm here!
Vicki and Colin 🙂 🙂 🙂
Hi Ali,
Wow big surprise if your mum comes out Tuesday or Wednesday, but if they think she up to it…..recovery always best at home. When Colin had an infection once his neutrophils were 0.4 and he was still allowed to stay at home. We were just careful with cooking food well, washing salads or giving the salad a miss, no soft cheeses etc.
Sometimes you can feel very helpless just watching, I know I have done. We very much hope your mum is on the up in blood, outlook and long may this mm thing stay in remission!
Vicki and Colin x
Good luck Wendy
Hope all goes well so that you can progress with your holiday plans….
Vicki
