Hi Vicki and Colin,
Pleased to hear everything went well with your hospital visit today, It is a lot to take in isn't it.
Steve has had his SCT scheduled for the same week as Colin, he will go in on the 19th August. He has already has his induction chemo, iv cyclophophamide and he starts his GCSF injections tomorrow so he will go in for harvest next Monday Tuesday and Wednesday, exactly the same as Ali's mum. He has not got his Hickman line yet, I must remember to ask him if he has a date for that. Last time he managed to arrange it for the Friday before he went in on the Sunday. it was the thing he most dreaded, not because it hurt or was uncomfortable but because he just hated having it dangling there. He would not have been without it though as it saved so much trouble with all the infusions etc and i think its much more comfortable than a cannula in the wrist or arm.
Which hospitals are Colin and Ali's mum being treated at? Steve is going into Kings College Hospital. I hope everything continues to go well for you both and you keep well,
Love Mari x
Dear Stephen,
Glad to hear all has gone pretty much to plan so far. Now you will play the waiting game and I hope it is very uneventful. The others have given you plenty of good advice, just take it as easy as you can.
My Stephen is a few weeks behind you, he had his induction chemo on Friday and starts GCSF injections on Monday ready for harvest on the 15th. I bet it already feels like a while since you were doing that!
I hope your time in hospital passes easily for you, we are both sending you our best wishes,
Mari and Stephen
Dear Andy and Steph,
A tough meeting for you both I bet but I am sure you are glad you have asked these questions and it's good to know your Doc's are taking things seriously and doing their best for you.
Hold on and stay strong, I have met a chap who had refractory MM and is now 12 years on and is still holding his own.
I hope you are still feeling well,
Love Mari x
Dear Angie,
I am so sorry to hear that you have lost your dear mum to this horrible disease. I do hope you and your family can remember her in the good days before it took hold. I am sending you my deepest condolences and you will all be in my thoughts and prayers, tonight and in the days to come,
with love Mari x
Dear Andy,
I am sorry that you find yourself in the position to be asking these kind of tough questions. As usual I think Dai and the others have hit the nail on the head. I think I would also want to explore the possibility of any Trials giving you access to other newer drugs.
I would also want to explore not only whether you can have an SCT with your PP at this level but also the type of SCT. It may be possible to consider a mini allo rather than an autologous graft. I dont remember whether you said if you have any siblings.
I dont know that I have ever heard of a suitable PP level for SCT to be considered. It might help you to know that when Steve had his SCT his PP level had risen from 0 in May to 17 in August, and possibly more by the time he went into hospital in Sept, the myeloma was certainly active at the time. Whilst his doctors were 'disappointed' there was never any suggestion that the SCT should not go ahead. He achieved total remission with pp's down to zero again and nothing in the bone marrow. He had 14 months of very good remission.
I am sure there will be some solution for you, stay strong and as the others have said, make sure you take a full part in the decision making.
Good luck for Friday,
Love Mari xx
Dear Mavis,
So pleased to hear your treatment has been so successful but I am sorry to hear you have been suffering with an infection. Hoprfully now, once your last cycle is over, life will be on the up again. I dont remember Steve having any withdrawal from CDT. He had some fairly bad side effects towards the end, terrible exhaustion so he could not get out of bed some days, his energy returned slowly, and as it did he was able to improve his mobility no end. two years on, we were remembering that he did not drive for maybe nine months. we have just driven back from North Wales this evening,and he did half of it, it's hard to believe how he was when he was first diagnosed. I am sure you will find that normality will start to return. Here's hoping for a wonderful remission,
Love Mari x
Thank you Eve, just a bit of fun and then we shall gird our loins. grit our teeth and get this thing done! For all those of you facing an SCT out there, it is worth it, so worth it that Steve is ready to go through a second with only a promise of shortened remission. It is tough but it is doable
Mari xx
Dear Tom and Elaine,
Delighted to hear your double good news, lots of time now to concentrate on playing with those lovely grandchildren in the 'cuddle chair'
BTW is Elaine happy with her um 'promotion' from 'Young Bride' to 'The old woman'? Better hope she is not reading this!
Lots of love to you both, Mari xx
Thats wonderful news David, long may it continue. Time to relax now and enjoy your summer before the next blood test, although I know you are usually much too busy to do much relaxing. When are you off to the Scilly's?
Love Marix
Dear Eve, Jo and Tom,
thanks for the kind words and good wishes, I have pulled myself together and feel much stronger today, onwards and upwards indeed Tom.
Eve – I hear what you say, I think a holiday and some sunshine is exactly what we need, Steve is still working full time and even managed to work three days a week throughout his velcade treatment, that man has a core of steel, either that or nothing between the ears, feels no pain, seriously he is a star. He met Debbie on Wednesday and said she was lovely. The transplant co ordinator we had first time around, Laura is now Matron of the unit, so it will be nice to see her again. Do they have single rooms on Waddington, and are there fridges available by the beds? We found this invaluable last time, as Steve did struggle to eat and I used to take him in as many tempting titbits as possible. I am not looking forward to the travelling, I used to hate those train journeys home late at night. I would leave the car at Sevenoaks, which has a direct line to Denmark Hill and then I have a 30 min journey home from there. At least it is in the summer, last time he was in it was Autumn and there were a few dull wet days, and it was darker earlier. Thank you again for all your support,
Mari xx
Dear Dai, Keith and David,
I wrote that late last night when I was feeling more than a little wobbly and I confess the feeling is still with me. Steve got 14 months of very good remission with his first SCT, we had a really wonderful year and I will always be grateful for that. However we did not think it was good enough to warrant a second go. I think we would be very glad to get the 8 months that you got Keith, most medics have said it is unlikely to exceed that which Steve had last time around. You bouyed me up hugely with the mention that some people have managed a longer remission, that would be absolutely fantastic but I wont count my chickens! There has been no mention of Plexiafor yet Dai, do you know the position with its licencing? However I know they are very good at Kings and I am sure they will get it for him if he needs it.
Gentlemen, thank you so much for your support, it is so good to know I can come here and receive such unfailing support and advice at difficult times. I hope you are all feeling well and looking forward to a relaxing time this summer. We have booked a couple of weeks in the south west corner of France between Stephen's harvest and transplant, I am still not convinced this is a good idea, but we are both really looking forward to a lovely holiday. As you might have guessed I am the 'worrier' in the family,
Best wishes to you all, Mari x
Hi Judd,
I am sorry you find yourself here, but as the others have said a warm welcome to the site. You might going to a Myeloma infoday is be a good way to meet fellow MMers. I have not kept up with things so I am not sure when the next one is in London but I am sure you can find out through Ellen or elsewhere on this site. I dont have MM my husband does, we live in Kent and he is treated between our local hospital and Kings College Hospital in London,
Best wishes Mari x
Dear Angie,
I am so sorry to hear that your dear mum has taken this turn for the worst. I cant begin to imagine how hard this must be for you and your family. You are all in my thoughts and I am sending you love and prayers,
Mari x
I cant help you with wheat grass Janet but I heard a nutrionist speak and she was very much in favour of antioxidants, found in highly coloured fruit and vegetables, blueberries strawberries, raspberries peppers, beetroot etc. Apparently these can inhibit cell division in cancer cells. Also a low sugar diet is good because again cancer cells use high sugar environments to give them energy to divide. I dont know whether this advice is specific to myeloma but it strikes me as good general advice for healthy eating for anyone,
All the best, Mari x
Dear Stephen,
thank you for your very interesting and complete description of your harvest procedure. My husband, also Stephen, had his SCT September 2010. Unfortunately he relapsed just before Christmas 2011. He has had 6 cycles of velcade to which he has responded well and we were very surprised to learn that his consultant considered him a good candidate for a second SCT. Like you he also produced just over 2 million stem cells and they all went back in during his SCT. He has been given date in mid July for another harvest and his second SCT will happen late August early Sept. Lie you we thought that it was not easy to harvest a second time, but of course we are happy to go with whatever the doctors say. He is treated at King's College Hospital in London, we live in Kent, and they do a huge number of Stem cell transplants every year. I believe they dont have enough space to store large quantities of Stem cells and so always use the full amount harvested.
Good luck with your transplant, we will all be rooting for you,
Best wishes, Mari
