Dear Dai
I can't really contribute anything to this thread – other than I am reading it with interest. However, as I've not spoken to you for a while I just thought I'd say hello, offer the usual seasonal greetings, hope your treatment plan goes well, is there a tentative start date? …….and send you a photo of my half decorated christmas tree…[Read more]

Dear Emma
It is an anxious time, and yes you do have some of these procedures done, not knowing what the outcome will be. However the risks of not doing anything can sometimes be worse than the treatment. The important thing is to be sure that the choice your mum makes is one that she is comfortable with. I really hope tomorrow goes ok, keep in…[Read more]

Hello Tom
If you look in the patient services section of the site , in the bottom left corner is a section called clinical trial tracker which will tell you what is available now in the UK in the way of current trials in your geographical area, and Amelie has recently reopened a long discussion in the general section about trials, under the…[Read more]

Hi Ann and Pete

Frank is 2 days behind Pete. He is due on 19th (all goes well). So I will be following your posts closely and wish Pete the best of luck in the world. Ann we were having 12 for Christmas and the registrar sad no. So we cancelled. But we don't thing she is right. We are seeing consultant before the zap of chemo starts so will…[Read more]

Hello Vicki

I am sorry i cannot be me help but my thoughts are with you never give up stay strong
Regards Jo x

Hi Scott

glad you are doing ok on the Bendamustine as we are both in trouble with our kidneys i wonderd how yours are reacting to this treatment because it might be for me down the line
keep well
Love Jo xxx

Hi Emma

Like Vicki I cannot say anything that will be of help to you. But I know what you are going through and I hope you get some comfort that there are many thinking about your mum. And wishing her well. Good luck for tomorrow

Take care of yourself
Love Jean x

Hi Vicki

Thanks for your advice. At first I was a bit uncomfortable when people visited but not now. Frank is more important. I have the poor mans head turned. He went with sons to pub to watch United. He has the hand wash, wipes and I made him take first defence before he left the house and he has it with him. And I forgot the Manuka honey -…[Read more]

Dear Emma
This really is tough for you all and I hope your mum is able to make the right decision for her, whenever and what ever they decide. I' d get prepared for Monday, pen and paper and every question you can think of written down in advance. You need to know what risks there are involved in each option, no surgery yet might mean higher…[Read more]

Hi Dai and Paul

Dai thank you for your post – you spoke very eloquently about Paul. I know we have lost very good friends to the this awful disease but I think it hit hard because as you say he was doing so well and was so young and just something that I never expected. I will make sure that Frank takes recovery very slowly and just pray that…[Read more]

Hi Charlotte

I can give you Franks experience. He was diagnosed in 2006 with Smouldering MM in Sept 2006 and was monitored every 3 months. Bloods and everything were fine and the he took a pain In his side. He had it for 18 months and was sent for an MRI which didn't show up anything Pain went on and it was decided to have a PET scan (I think…[Read more]

Yes Helen a complete bolt from the blue. Doing the blast of Chemo on Tuesday and then injections twice a day till the following Wednesday and if all goes well they will harvest on the Wednesday. No date for the cells to be put back as we were told that Leukemia and lymphoma patients get first dibs. It was quite a shock but we are seeing consultant…[Read more]

Helen thanks so much for the info. I am so glad that I posted my concerns on the forum as the replies, info and advice that I have had has made things so much clearer and put my mind at ease a little. I can't help but worry as my mind runs riot. The registrar had said that if he put the SCT of for a a time he may relapse andd then he would have…[Read more]

Dear Jean
My word that's a bolt from the blue, do they plan to get him in for transplant before Christmas too, or just do the collection? Better book into someone else's house for Christmas lunch I think, it's going to be very busy. Keep us posted on the progress
Love Helen

Hi Babs thanks for that. I am trying to get things straight in my head so I can give Frank Informed information. When I think of your post it does make sense to try and keep him infection free as possible. One of our sons tell s me that I am OCD when we have visitors they are made to cleanse their hands. I will pass your info on to Frank as it…[Read more]

Hi Jean,
Good luck! I had my harvest in October, and unlike Megan and Phil I had the opposite problem of too much info… The transplant coordinator nurse sat me down and told me everything very clearly and then the consultant came in and told me the same things all over again 🙂 He is German and very meticulous! They also gave me a DVD called…[Read more]

Hi Megan and Ali

Thanks so much for your posts. I really appreciate the support. Don't know what I would do without the forum and all my cyber friends

Take care and thanks again
Love Jean xx

Hi Peter

Not sure if I am thick or what. Clicked on the link and it brought me into the site but can find no link to play the recording. I am very interested to hear it as Frank is going for SCT. Any guidance how to listen

Thanks
Jean

Hi Megan

iWeb we saw the registrar yesterday ( she wasn't the brightest tool in the box) but after she gave us the dates for chemo and harvesting she told Frank to stay away from people. Was Phil told this as well? We were talking this morning and Frank says he can't understand this as he is only having the one zap of chemo. Megan ani info…[Read more]

Megan, Vicki, Colin and Tom

Thank you so much for your posts I have followed SCT posts for some time but when it arrives on your door step its another story. Thanks Megan on the tip about bananas, I have started a note book. Hospital told us before harvesting for Frank to try and eat cheese and drink milk to build up calcium. My best…[Read more]