I’m a serial worrier – about everything – and your comments are really positive – thank you!

Thank you for your reply to my post and for your good wishes, it means a lot to share that thank you. Nicki

As I have just posted in another reply, at 66, diabetic and not especially fit and with only one kidney, Kevin was perhaps not an ideal candidate for SCT but all tests showed he could get through it, and indeed he has and life is…[Read more]

We are lucky in that we both work largely at home ( we changed our lives this way after Kevin had…[Read more]

As we live so far (50 miles) from the cancer centre where Kevin has his treatment we were advised that Kevin may have to stay in for a few days longer post SCT because of the risks of being so far away, so we were expecting a three week stay in the area although Kevin was determined to get home as soon as possible!

From my understanding a…[Read more]

I’m pleased to know all is going well for you too! I hope the blood results are looking good and you must be getting v excited with your forthcoming move to Australia. One of the pluses I guess that comes from having ‘cancers’ is that you can appreciate the good things in life more and become rather good at being hedonistic and then tend…[Read more]

After a couple of days when his temperature kept spiking ( we eventually realised the canula was becoming infected which was most likely the cause) everything settled down and he…[Read more]

I think we all inevitably have some anxiety about the unknown but I think you will find a lot of  posts on this site about people’s different experiences of SCT. The more informed you are, particularly about preparing practically,  hopefully that will allay your concerns to some extent. Hopefully you also have a specialist nurse or t…[Read more]

Re your analogy with childbirth I think Kevin now has a lot of empathy for expectant…[Read more]

Pleased to say Kevin is doing really well after his SCT and I would say overall things have gone much better than we expected so far. He didn’t really have any side effects until Day 8 and I will probably post details in the next day or two as they may be of interest to others.

I have just added up the number of meds Kevin is having for…[Read more]

I wonder if you have accessed the US based Myeloma Beacon website, I like the depth of information on trials and research, the weekly polls conducted through the forum and the general layout which I think is easy to navigate. However as it is US based,  standard treatment regimes are not the same as in the UK and different terminology and…[Read more]

Nicki

Kevin got cramps similar to yours whilst on CDT, especially in the last two cycles but it completely disappeared when he finished treatment. We were told it was a slight bit of pn but Kevin has had a few problems in the past with ‘trigger finger’ and from using a  keyboard a  lot so we thought initially this was coming back.

I really l…[Read more]

Thank you so much for your uplifting post – so good to hear that your experience of SCT was pretty positive overall and that you did not suffer any infections – did you take any particular precautions re infection control? I’m very obsessive anyway about cleanliness – I’ve just been totally disinfecting Kevin’s bathroom and bedroom…[Read more]

Thank you so much for your reply and indeed I have been following your posts since your SCT too. it’s good to see that you are doing well and it was interesting to have details of your journey so far.

Actually Kevin’s progress so far seems to be similar to yours – now its Day 2 after having the stem cells transplanted and he is feeling…[Read more]

I haven’t posted for a while for several reasons, partly as I ‘ve been trying not to think too much about Kevin’s forthcoming SCT in his two months after coming off the CDT and secondly life has been v busy with all the prep and us both getting lot of work done before the process.

Pleased to say life has been somewhat normal and we…[Read more]

Thank you so much for your post, there’s always a lot of comfort when you hear a positive story and I was pleased to hear about your father and how well he is now. I’m wondering if he had any bone or kidney damage at diagnosis and what his para protein levels were? Does he realise what a rare entity he is! Was he misdiagnosed with…[Read more]

Thank you for your welcome and for sharing your husband’s experience of the PADIMAC trial. the info you have given is very helpful- currently, in cycle 3, my husband’s pp levels are down by 80% and it’s feasible I guest gather may be down by 90% plus. He really wants to how ahead either the SCT as soon as poss as his age may be against…[Read more]

My threads with Carol have prompted me to post my thoughts on the above. If Kevin had continued to be treated at UCH in London he probably would have been eligible for the PADIMAC trial. From what I understand this trial has come about because of the better efficacy of the more novel treatments and so will look at whether SCT after initial…[Read more]

Thank you for your very warm welcome and it must be a welcome relief for you to be home! I have been reading your posts with a great deal of interest in the last days, to hear about your journey so far and how brilliantly you seem to be progressing! It must be a huge relief to be home but I suspect you will worry if you get the slightest…[Read more]

Thank you for your welcome and for your reply. I think, like everything else in a partnership, you both have complimentary characteristics and I think my husband is absolutely right in thinking about the MM only when he really needs to. I certainly only mention it when he raises the subject of it even though I admit (as probably a…[Read more]

I’m new to joining the site – have been trying to post and create a profile for about 3 days and have finally managed it after finding a post from the web team, was quite a trek to see how to do it all.

I thought the face mask post was hilarious but seriously (as I can be testament to)ebay has face masks, disposable gloves and all sorts at…[Read more]