My husband, Stephen had his second SCT on September 15th. His first one gave him 14 months remission and we were surprised that he was offered a second but he decided to go ahead on the basis that it might buy him some more time. He will have his 100 day bmb just before Christmas so we have no idea as to how effective this one has…[Read more]

I am with you 100% on this. I know you have had a very tough time over the last two years and I am sorry that this has taken a toll on your health. I really hope you are getting some relief now and will feel better soon.

I can only echo your experiences and I have to say I really dont know how break the cycle. I would be grateful…[Read more]

Really pleased to hear things are on the up and I hope Colin soon starts to feel a lot better,

Much love and best wishes,

Mari xx

I agree with Eve, there is no 'normal' with this disease. I know it's easy to say but try not to worry that a low neut count means your disease is still active. Remember the melphalan takes out the bone marrow where all the blood cells are made. Some are quicker to recover than others. Steve had his second SCT almost 8 weeks ago,…[Read more]

I am glad I was able to help. I know how hard it is to just watch without being able to do much to help. I too struggled with what to find to tempt an appetite. I agree with Helen that sometimes fluids are most important. I found some cold fruit teas in M&S, Steve enjoyed raspberry and Rooiboos (sp), 130 calories, and there is a…[Read more]

just a quick word to wish you both well and a good recovery and remission for Colin,

Love Mari xx

Bad day yesterday, high temp, 39 +, low BP, dont really get that, maybe dehydrated but 103/ 59 sounds v low to me, anyone medical can explain this one? Still got the rash but I thought it looked a touch less angry last night, hard to say. But worst of all the…[Read more]

Wooohooooo

Mari x

Just a quick note, I notice I have been repeating myself in my posts, must be losing it!

Anyway Steve's neutrophils were down to 0.4 yesterday. so he is nearly there, and then we just wait for the graft to take and his bloods will start to move upwards. He had three day Zeros so today is Day 4 and they will start GCSF…[Read more]

Steve is going down faster than I remembered last time. He has a sore throat and mouth and cant face the idea of food. We got him to eat a yoghurt and some ice cream today but just the smell of his meal turned his stomach. He has developed another allergic reaction so is covered in a very itchy rash which makes him hot and…[Read more]

Much love Mari xx

Thanks for your good wishes. Steve had his melphalan on Monday and all went well. He has had 12 bags of stem cells back over three days finishing today. The nurses have been watching him like a hawk for an allergic reaction and he was fine until last night when he started to itch. They are filling him full of antihistamine and…[Read more]

I am chuffed to bits for you both, what wonderful news. I hope Henry's remission lasts a good long time and you can enjoy some normality,

Love to you both,

Mari xx

I know I have not been around much lately, life has been a bit frantic, with hoping for Steve to go in and my dad has been rather poorly in North Wales however it is settling down at last.

Steve went into Kings' a week last Sunday but was sent home on Monday with an infected scratch on his finger, after a week of antibiotics…[Read more]

I hope you have a wonderful time on your holidays, you certainly deserve it,

Much love Mari xx

PS dont be too much of a stranger, we will miss you!

Despite finally getting enough stem cells and having been given five different dates for admission, Steve has not yet gone into hospital.

The delay has all boiled down to funding. I don't remember it being an issue first time around but it appears that funding must be applied for when it comes to a second SCT. It also seems to be…[Read more]

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]

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]

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]

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]

Love Mari x

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]

You have not rambled at all, but feel free to ramble as much as you like…[Read more]

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]

Mari

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]

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]

After a discussion with his doctor it was agreed that he would have yet a further…[Read more]

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…[Read more]

Love Mari xx

Thank you for all your good wishes, it's so good to be able to fall back on such a wealth of shared wisdom and experience, it's like having a huge family gathering round for support. I dont have much family, and, apart from our two children, all that I have are too tied up with their own problems to be very supportive,…[Read more]

Just waved him off, he said he was feeling fine but I hated him going off alone. I guess it might be easier second time around. He says it's not painful, or even very uncomfortable, just very very boring. I think he will probably sleep as much as he can. Last time the staff were very good at providing tea coffee biscuits sandwiches…[Read more]

Yes this is Steve's second transplant. Some people have been told that if they manage to harvest a large number of cells then they can be stored to be used at a later date. They dont seem to do this at Kings, they do so many transplants that they dont have enough room for storage. Steve harvested about 5 million last time and they were…[Read more]

Good to hear from you, I have been thinking about you and wondering how you have been getting on. I am delighted to hear things have not been 'too bad' and now from Day 12 things should be on the up.

Take care and take your time, your bloods will come up in their own good time, I know it can be a frustrating wait…[Read more]

Mari x

Glad to hear things are going well for your dad but sorry to hear your lads are poorly, it's such a shame when they are little.

Chemo is horrible but the best bit about it is that, hopefully it will be effective and your dad will feel a great deal better when it is done and enjoy some time in remission when he is likely to be able to…[Read more]

I am so pleased to hear that you are feeling so much better. It is such a vexed issue to make the decision to go into hospital with a raised temp. Steve has been rushed in before now with a high temp and chest infection, only to be sent home with a good blood count and feeling slightly silly. I dont believe it is ever a good…[Read more]