I am so sorry to hear your news, what an awful blow it must have been. I know you are strong and are not about to give up. Our thoughts are with you as you undergo the next lot of therapy to beat this cancer,
Much love Mari xx
Iam so sorry that you and Stephen are having such a difficult time. You have always been such a source of positivity and strength and you have helped so many people here on the forum. I am thinking of you both and hoping for some relief for Stephen which I know will also bring you some relief as well,
Stay positive, stay…[Read more]
As the others said dont worry about posting, this forum has been a godsend to us as we have made our way on the good ole myeloma journey.
I can tell you a little bit about the Royal Marsden. There are two parts but generally the transplants are done in the unit in Sutton in Surrey. It is a specialist cancer unit and has an…[Read more]
hi Vicki and Colin,
Pleased to hear you are having the cyclophosphamide induction with the GCSF. I am sure this will do the trick for you. It worked a treat for Steve the first time around. You will have bags and bags of lovely little stem cells before you know it. Sorry to hear about the mobiliser though, it really so unfair that we have this…[Read more]
I do know of someone with Myeloma who has developed diabetes as a result of taking dexamthasone. Although I know she reads this, she does not post at the moment. I know she was on Dex for quite a while, but is hopeful that the diabetes might be reversed now she is off the dex andawaiting an SCT.
I hope things work out for…[Read more]
Dear Vicki and Colin,
I have just got back from our holiday and caught up with your news. I am so sorry that Colin's harvest has not gone to plan and even more so to hear that you are having trouble getting the plerixafor. As you know Steve had similar problems but did manage to get enough Stem cells in the end, 2.1 million, so just about! I…[Read more]
so glad to hear that Slim is on the up now after his SCT. Like Dai I feel that two months is not really all that long and it does take time for the body to recover from such a huge shock as an SCT.
I throughly recommend the holiday when you can get away. Steve's platelets were at 50 when we left, as you know it was touch and go…[Read more]
Hello Vicki, Colin and all,
Good luck with Colin's harvest next week and for his transplant from the 14th, I am sure it will all go to plan.
Steve did manage to get his 2.1 million by hook or by crook, so we are very pleased indeed as you can imagine. Today his platelets were at 50 and that has been considered good enough to fly, we are also…[Read more]
Late night last minute post, evening all, and thank you for all your support, it is really appreciated,
Well he managed 0.82 miliion yesterday and 0.85 million today so he is nearly there, just 0.32 needed tomorrow. They are pleased that he has been increasing each day, but there is some bad news associated with this good news. If he increases…[Read more]
It's a rocky road you are following and there does not seem to be much of a straight and narrow as far as myeloma is concerned, but you are one of the best at keeping a postive outlook and I am sure that good general health will help you overall. I know you and Janet follow a really good diet and you both look so well in your photo.…[Read more]
Day two of the harvest begins, another jab of mozobil and bucketfuls of GCSF, so he was straight onto the machine this morning. They managed to harvest 0.8 million yesterday and they need at least another 1.2 million over the next two days, so I feeling hopeful that they will get them.
It seems that whilst a second harvest is…[Read more]
Good to hear they are still pushing on with your treatment, that cyclophosphamide is nasty stuff, but I think it's pretty good at getting the job done against myeloma cells. I hope the radio goes well too and brings you some relief. Steve has not had to have any to date but from what I have heard from others on the forum it can do the…[Read more]
Oh Etta, I am so sorry to hear your news and for the loss of your sister. What a difficult thing to face when you are dealing with myeloma yourself. But you don't have a thing to feel guilty about, life can be harsh and we have no choice but to play the cards we are dealt.
You have not rambled at all, but feel free to ramble as much as you like…[Read more]
Hi Ali we have not heard how many he has got, he has got to go back tomorrow to find out, he had another plexiafor injection and lots of GCSF. He expects to need to be there for two more days.
I am glad your mum had a nice day out, it has been quite warm here (Kent) today and, best of all, dry.
I will keep you posted, watch this…[Read more]
Absolutely Dai, it's a real relief, I was beginning to wonder if the whole thing would be off if they could not get the stem cells. I shall be sitting by the phone tonight, waiting for the call to say how many he has got today,
Thank you for your support, things are looking a lot better now and the wonder drug has done its work. Steve is on the machine as I write but he wil only get 4 hours in today.
As for the packing, we have been married nearly 30 years and I have never known him pack a thing. He just says I need swim shorts and T shirts and It is up to…[Read more]
Yes indeed the plerixafor is £5000 a shot. Steve said his nurse was scared to spill a drop as she gave it to him last night. It seems to have done the trick. The stem cell level in his blood was 3.1 yesterday, no idea of the units, and they need it to be at least 10 to harvest. He was not very confident when he went off this…[Read more]
Thats great news, I bet your mum is delighted to have done so well in just one day. You will see from my previous post that Steve has not done so well today but he was not great on his first time round either, it took him two days to get just over 5 million cells which all went back in during his transplant. He seems very attached to…[Read more]
Thank you Dai,
It is good to know that it worked for you. I know it is terribly expensive and it seems they are prepared to give Steve possibly three doses, today, tomorrow and Wednesday. They have said that they fully expect to need three days to be able to harvest enough cells. It took quite a bit of doing to get enough stem cells the first…[Read more]