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]
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]
Just a quick note on taste, we had a bit of a celebration this weekend as Steve got his 'Beer taste' back and he enjoyed a bottle of beer with his supper,it had tasted horrible before, things really do improve a little bit all the time!
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]
Hang in there Vicki, I know how tough this must be for you, quite apart from what poor Colin is going through. Steve had a similar experience, caused again by the large number of bags of stem cells and the effect of the preservative. He went downhil from the Thursday of the first week, having had melphalan on the Monday and stem cells back on…[Read more]
Stephen came home yesterday. As is to be expected he is very weak and listless. According to the letter the doctors sent home with him he suffered neutropenic sepsis, acute kidney injury and liver damage while he was in. I was surprised we did not hear about this at the time but I knew he was very poorly. It will take sometime for him to gather…[Read more]
Morning all, should be working, but skiving on the computer so a v quick one.
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]
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]
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…[Read more]
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
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 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 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!
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]