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 extremely relieved at this news. So a little break before he is back in on 20th Aug.
Interestingly he is due to get his Hickman put in place in 20th, melphalan on 21st and Stem cells back on 22nd, we were surprised that they would pack it all in together so closely. He is getting the rest of his work up on 8th August.
Thank you all for your support and good wishes, I hope you can all enjoy the sunshine this weekend,
Love Mari xxx
Sorry to hear you are not well Dai, i do hope the antibiotics work and you are feeling better very soon.
Love Mari x
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 again tomorrow they will have him in again on Friday. The thought of four days on the machine is doing his head in but if there are stem cells to be had they want to get them all, which of course is better for him in the long run. It does mean though that his platelet count is likely to be too low to allow him to fly, the holiday may not be cancelled but possibly on hold for a day or two, I am sure we will work it out,
I hope everyone is sleeping well, I am off to bed myself now,
Love Mari xx
Dear Dai,
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. Looking well is a curse of the myeloma sufferer maybe, but I do hope you can manage to avoid some of these nasty bugs that have beset you for a while. Tom is right, you may have to wave through the window at some visitors.
I know exercise is difficult for people with myeloma. Whilst he finds walking difficult and certainly cannot run, Steve has found he can swim and cycle. During his velcade treatment he found that doing a little exercise made the side effects, chiefly exhaustion, easier to bear, and gave him more energy in the long run. He has been obsessed with getting fitter before his SCT and is in much better health, apart from the myeloma (how could I forget) than he was last time around.
I hope today finds you on the mend, and that you have a spell of good health so that your next blood test shows a decrease in those numbers, although I agree with the others, your current results are all of the same order of magnitude and therefore an indicator of stability rather than anything else,
Love and good wishes to you both, Mari xx
Morning All,
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 not impossible, it is much more difficult. We dont know how low his platelet counts are today, we will find out later.
With regard to the holiday, it's still touch and go, but I have found trains right down to that bottom corner of France, and we don't live to far from Ebsfleet, so it is doable, we shall just have to see. Of course my lovely stubborn husband will insist upon travelling alone and sending us ahead on the plane, but thats another dicussion for later. I am sure this stubborness has been a great help in getting him through his treatment so far.
I hope all is well in your worlds this morning,
Much love Mari xxx
Hi Andy,
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 job well, I bet you would be really chuffed to be rid of the catheter.
I love Helen's comment, 'just keep swimming', it's what my daughter and I say when we hit a sticky patch, works for us, Nemo is such a cheerful chap!
Love to you both, Mari xx
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 if it helps make you feel better. This forum is full of great 'listeners' and we are all happy to do anything we can to help.
Be kind to yourself at this time, take life as easy as you can. My thoughts are with you and all your family,
Much love Mari xxx
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 space!
Love Mari xx
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,
Mari
HI Ali,
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 me to fill in the gaps!
I am still hoping it will be ok, it's still not 100% sure. I hope your mum and dad get a good break. Apparently the Jet stream is set to move and we are due for some lovely weather for the end of the month, just what they need. I hope you are making time for a break as well. All these hospital appointments are very stressful and I sure you could do with one,
Much love Mari xx
Hello folks,
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 morning and expected to be sent away again. However his blood levels were 11.1, the stem cells had been well and truly mobilised, every penny well spent. However he did not get onto the machine until midday and will have to be off at 4.00 pm so the stem cells can be sent to the lab and he can have his next shot at 5 o'clock. So he will be on the machine for two more days and back in on Friday for more blood tests and a general check up. Apparently a side effect of the plerixafor is to reduce platelets and his were down to 110 this morning and this gives rise to the increased risk of bleeding so we are not out of the woods yet. Keep those fingers crossed!
Thank you everyone for your support, as ever this is a roller coaster ride, a little good news then a little bad, often in the same day, makes me feel queasy,
Love to all Mari and Steve xx
Hi Ali,
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 his stems cells. Today he has had a very expensive but hopefully very effective stem cell mobiliser drug and hopefully overnight all his cells will come rushing out of his bone marrow into his blood stream. The docs did not seem too perturbed but they have said he will need three days on the machine. He is not best pleased at the thought of that!
Once again, big hugs and congratulations to your mum, you must be delighted,
Love Mari xx
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 time around, he likes to hang onto his stem cells! I just hope the plerixafor can encourage those little monkeys to stop sticking to the sides as you say,
Thank you for the encouragement,
Love Mari xx
hi Amelie,
Thank you for this, Stephen is going in for his second SCT on 19th August. He has been in for his stem cell harvest today but was not able to go through with it as the stem cell levels in his blood were too low. He has been given plerixafor to mobilise the stem cells and he is going back in tomorrow.
I am pleased everything has gone so well for John and I hope he is soon back on his feet,
Mari xx
Good luck Tom, I am sure you will be brilliant on Deal or No deal, and your sunny personality will shine through at the interview. I am with Jean, I hope you see this through all the way to that quarter of a million, you deserve every success,
Love Mari xx
