Hello Eve,
I am sorry that you are having this worry with Slim's recovery. Steve also had his SCT in Kings and was in the same position when he came out because his treatment and monitoring were all done in Pembury, and yes, you do sometimes wonder if they talk to each other. Steve's platelets and neutrophils seemed to take ages to come back up, and if i remember rightly there was some problem with the clotting agent in his blood which is also related to platelets. I dont remember him having much whole blood but I do know he had a lot of platelets. No one seemed worried at the time and he did eventually come back and in fact recovered very well over time. We find it really helpful to talk to Sophie up at Kings, our specialist nurse. She always has time to talk and is very knowledgeable and wise. I remember that Steve's neutrophils were bumping along at a very low level for what seemed like ages, he did not come out of hospital for three and a half week but suddenly when they did start to improve they came up fairly quickly, as did his haemoglobin which was also low for ages.
I do hope thingsz settled down for Slim soon and you can both start to relax and just enjoy some time together,
Love Mari xx
Dear Siobhan,
I am so sorry to hear of the loss of your lovely mum. I dont have the eloquence to tell you how wonderful Bridget was, I never met her but her warmth and humour, her caring for so many others even at times when she was not feeling at all well, was amazing. She always had a kind word and a witty thought to bring a smile to everyone, even at the most difficult times. She knitted a hat for my husband when he lost his hair, the wool was so soft and the shape and size perfect. The care that she put into that hat was just a small sign of the care that Bridget felt for everyone. I am sure you know what a wonderful person she was, you should also know what a great deal of love, affection and esteem we all feel for her on this forum, even though we never met her in person.
You and your family are in my thoughts and prayers at this sad time. I am so glad that Bridget slipped gently away with her family near her and that she is feeling no more pain, I know she had to suffer a great deal through this disease, and she suffered with great dignity,
Much love Mari xx
Dear Ian
Sorry to hear about your allo, specially with what sounds like a nasty op to follow. Good luck with the velcade i am sure it will work well for you,
All the best
Mari xx
Hi Jean,
sorry to hear things are not going smoothly for Frank. I know that sometimes it can be difficult to take in everything that the doctors say. Stephen and I often have conversations after consultations,going over what has been said and trying to fully understand. We have found it invaluable to talk to Steve's specialist nurse. She usually has more time to talk than the doctor and is very good at explaining things for us. Steve will often give her a call to talk things through at crucial points in his treatment. Do you have a specific nurse that you can have a chat with?
all the very best to you both,
Much love Mari xx
PS a very Happy birthday Jo, i am glad you have had such a lovely day xx
Thank you for posting this Dai, it's good to see the quality and quantity of work that is being done on Myeloma, it inspires great hope for the future.
I hope you are feeling well now and have been enjoying this good weather,
Love Mari x
Dear Kev and Liz,
So sorry to hear your news. We had similar news in November when Steve relapsed after 13 months. He started velcade and dex in December, and he has just finished his 6th cycle. His paraprotiens were below 2 after the 5th. Steve was quite poorly in January/February with lots of coughs and colds but he feels very well now. He managed the chemo fairly well and was even able to work three days a week. He found the tiredness and exhaustion crept up on him as he went through the cycles and he finds that dex causes him terrible bloating but this is subsiding now and he is even losing some weight. The best thing is that this treatment has worked very well and he is looking forward to summer. I do hope that you and Kev can also have a positive experience with the treaatment, and he is soon feeling well again and he can get through the treatment without too many nasty side effects. Steve is now preparing for a second transplant which is likely to take place in late summer.
I hope all goes well for you,
Love Mari x
Dear Carol
I am so very sorry for your loss of your husband Brian. It seems so very hard that you had such a short time after his disgnosis. I cannot tell you that your pain will ever go, I have no experience of such grief, but I hope that day by day it will decline and you will be able to remember Brian as he was in the good times before this awful disease afflicted him. I send my deepest condolences and prayers that you and your family will find some comfort in your grief,
with love,
Mari x
Dear Eva and Sue,
It may help but I remember a conversation with Steve's consultant during his SCT. The bone marrow is knocked out by the melphalan but can regenerate iself without a transplant, but slowly. They give the harvested cells back to improve this regeneration in the process of grafting. I think that for some people the process can just be slower than others.
Dear Eve,
I am sorry to hear that Slim is having such a tough time. I rmember it with Steve, I would come in and find plates of cold food untouched. Sometimes he was too weak to even open his eyes when we visited. I used to take titbits to try and tempt him and often had to feed him to get him to take something. I am sure you have been through all of this and I am not telling you anything you have not already tried, but here are a few suggestions, yoghurt, difficult to find but you can get the non bio ones, fruit jellies, cool and slips down easy, tinned fruit, ice cream, cheese or cheese spread and crackers, or tiny pieces of toast with cheese spread or marmite ( love it or hate it!) or even good old lucozade. It's almost like feeding a sick or difficult toddler. I am sure you know what he enjoys but his taste will be changed by the chemo, Steve often wanted chocolate to take the taste in his mouth away but he usually never touches it. I dont know if you can find Gill's account of Stephen's SCT but she had lots of good ideas about encouraging him to eat.
I remember that Sunday journey so well, a nightmare at times, I wish you both well and hope Slim turns a corner soon,
Much love Mari xx
I am chuffed to bits to hear your news Dai, but so sorry to know you have had such a tough time over the last few weeks. I admire your strength and positive outlook. I wish you a very happy and long lasting relationship with Rev and Dex,
My love to both you and Janet,
Mari x
Dear Gail,
You poor thing, I know this must be very hard to see the man you love changing in such a way. I saw the same thing with my husband. He became very anxious and depressed when he was undergoing his CDT. Partly it was to do with the treatment and partly the shock of diagnosis and the complete change in his life. He was a very active man, cycling swimming sailing, and he could barely walk and did not work at all for a year. I believe Dai is right. It would be very good to talk. In our case Steve did not want to talk to me because he was afraid to upset me, silly man felt he was letting me down. His Oncologist arranged some counselling for him and he had a marvellous counsellor that he was able to say anything he wanted to. This helped him open up and he began to talk to me. As time went by I saw all the classic signs of bereavement, anger, depression and finally acceptance when he was able to start being more positive again. He did recover his normal good temper and positive outlook as soon as he finished the treatment and the drugs were out of his system. Steve is not the sort of man to be depressed or anxious so this behaviour was especially shocking. Do hold on, I am sure things will get better. After Steve's SCT we have a wonderful year of remission, shorter than we would have liked but nevertheless almost normal. He was able to work, his choice, and we travelled and spent time with our friends and family. I am sure that you and Howard can come through this difficult time and find a normal life again. Hold on tight.
Much love Mari xx
PS we all curse dexamethasone for all its nasty side effects, but I say Bless it, it works well in the battle to fight myeloma and really helps keep the disease at bay
Hello Tina,
It seems that a reaction to allopurinol is actually rather common. My husband was fine when he took it with CDT but had a dreadful reaction when he had it with his SCT. He went red then purple from head to foot, and then lost an entire layer of skin, all over, and yes I mean ALL over. Poor man, he felt dreadful. Luckily they will not give you allopurinol during your SCT so hopefully you wont have a repeat reaction.
I hope you are fully recovered now and I am delighted to hear your blood test results,
Love Mari xx
Excellent news Tina, keep on going and I hope you see the right kind of progression next time around,
Love Mari xx
Dai, once again your strength, commitment and bravery have inspired me. You hang in there, fight your corner and keep this disease on the run. I am certain that a positive attitude can play an active part in the way the treatment works,
much love to you both, Mari xx
PS where can I find 'The Secret', I would like to watch it
Dear Eve,
I am glad things are going to plan for you now. it must be tough for all the family after what you have been through lately. I am glad you are able to stay with your daughter, it makes the journey much shorter for you. Steve has got the dates for his workup in mid june, then stem cell harvest in mid July, followed by the transplant in late August. Hopefully we can get a holiday in sometime late July early August. I dont know Waddington, does Slim have a single room? Steve found it invaluable, especially with an en suite bathroom when the runs started.
We will be thinking of you and hoping that all goes well for you now that Slim has had his cells back. Look after yourself and family too,
Much love, Mari xx
Good news Andy, I hope the nasty BMB is better than you fear, the idea sets my teeth on edge but hopefully you will get the results you are hoping for,
Much love,
Mari xx
