One word,
Wooohooooo
Mari x
Hello everyone,
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 injections on Day 7. I feel things are moving on but I doubt he would agree with me. He just feels dreadful and is really struggling with eating, he is suviving on ice lollies, yoghurt and jelly at the moment. He knows he has to try and struggled to get a quarter of a piece of toast down, with a bit of cheese on it. I think he did more for me than anything else, but at least it is a few calories.
I hope all is going well for everyone else, I am sorry I dont have much time to read everyones posts but I am wishing you all luck,
Love Mari xx
Thank you Eve,
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 uncomfortable. It turned out he was running a temperature as well this afternoon and was better this evening after some paracetamol. At the moment I cant get him to even contemplate food but I know things will improve with time.
Steve has his i pad with him but the internet connection is not great and he cannot get the bandwidth for Skype, but I dont think he can be bothered with it at the moment. He texts me and the children each day and we talk every evening when I get home. I usually get in about 9 ish ready for a cuppa and my bed. I agree with you on the cleaner, I work full time and usually get home about 6.30 ish so it's a luxury I have had for a while. Mind you the house is not really getting dirty as there is no one here most of the time! My daughter is home this weekend and we drove up together which made a nice change. My son lives in London and he came in to see Steve as well. It's not often that all four of us are together these days, shame it could not be under better circumstances.
Thank you for the food ideas, I am going to try him with some ice lollies tomorrow. I hope you and Slim are able to enjoy life and that he is feeling well now,
Love Mari xx
Oh Gill i am so sorry, I have been away and preoccupied but i have always thought about you and Stephen, I am still thinking about you now and have shed tears as I write this.
Sorry not making sense, I hope you can find comfort in your many happy memories of your time together,
Much love Mari xx
Thank you Min x
Hello everyone,
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 he is feeling a bit groggy. I have not been to see him tonight as I am feeling a bit sniffly and I dont want to take anything in to him. Derek Mitchell ward is where they do a lot of donor transplants and they are extra careful. I usually dash off as soon as lessons finish at 3.45 and get into the hospital just after five. Yes Eve, you have described it perfectly. I am working on getting my walk from the station down as quickly as possible, I hate hanging around on Denmark Hill Station. I usually get home about nine ish and then flop into bed, ready for the next day. Steve's appetite is already starting to wane and I am trying to think of tasty little bits to take him. The dietician has told him to graze, little and often. Any good ideas anyone?
It is surprising how little I remember from last time, for example how long does it usually take for the stem cells to graft? I have 15 days in my head but I am not sure. Steve was in for three and a half weeks last time but he has told to expect to be in a bit longer this time as he has fewer stem cells. He had over 5 million last time but has 2.2 million now. We are just going to relax and go with the flow, there is nothing we can do to speed things up, in time things will run their course and he will feel better.
Thank you everyone for your kind words,
Love Mari xx
Dear Sarah and Henry,
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 am so delighted for you both, and so pleased that you did post. It gives everyone a lift to hear such good news.
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!
Dear David,
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
Dear Gill,
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 strong,
Much love Mari xxx
Hi there,
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 excellent name.
The haematology – oncology is headed up by Prof Gareth Morgan, who is one of the top men in myeloma treatment and research these days. Your dad will get some of the best treatment available.
However if you live in Devon, I can see that it is a bit of a problem having to travel all that way. I know that the Royal Marsden do provide some accommodation for relatives when visiting.
Maybe you could explore the possibility of having treatment closer to home. I know of people from this forum who have had treatment in Plymouth, Taunton and Bristol, and I am sure that the R,D&E would do it too.
In the meantime, good luck with finding a match, I am afraid I dont know anything about that.
Best wishes,
Mari xx
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 post code lottery when it comes to important drugs like these,
Will be thinking of you as you go through the process,
Much love, Mari x
Hello Kevin,
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 you, it does seem sensible to reduce the dose of dex if they can if it is causing your problems,
Mari x
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 think I have heard of people getting funding for plerixafor in your region but it is such a time consuming process and it puts the whole process back for, it must be so frustrating.
I am surprised that Colin had not had the cyclophosphamide induction, I also thought this was a standard treatment. If he has not already had this, then maybe this alone will be enough to mobilise the stem cells. It works by killing off some cells and therefore encourages the body to produce more new cells and the whole process is boosted by the growth hormone GCSF injections. Steve had the cycloprime and his hair did fall out. He has a very thick head of hair and his hair came out in clumps leaving him with a very fine covering of hair over most of his head. It's a bit disturbing seeing it all over the bed in the morning.
Good luck for all his Colin's future treatment,
Lots of love, mari xx
Morning Eve,
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 if he could fly but they did give permission at this level. His haemoglobin and red blood cell counts were also very low, below 10, and he felt very washed out in the first week. Added to this his hair was coming out in clumps after the cyclophosphamide, I wished we had taken his razor to just take it all off. We did a great deal of sitting around, reading books, in that week. However by the second week he felt so much better and started to swim, gaining strength every day. He has gone into work today but he will be in Kings on Wednesday for some of the work up for his SCT. Maybe he will see you there, although I know he has appointments all over the hospital, heart kidneys etc. I wont be with him as I have to go up to see my Dad in North Wales as he is not at all well,
Good luck, love Mari x
