[pennylawsonParticipant]

Just starting on DVd now so very useful to read this thread, and the other two on DVd. My regime is a bit different from the one set out above, guess they tweak it for different people. It is quite complicated so have done my own handy spreadsheet for what to take when, thanks for the tip Rachel.
Will post updates as I go along, great to have the support from this forum.
Penny

[pennylawsonParticipant]

Hi David and others
I’ve just started on DVd regime. Very helpful to read this thread as I know its quite a new treatment, and certainly has only been on offer in the Highlands where I am for a few months, so really useful to hear personal experiences. I’m at first relapse after 8 years remission, and will go on to the maintenance Darzalex after 24 weeks. Injections only, glad I don’t have to have the lengthy infusions.
First session was fine, feeling a bit off today but perhaps not surprising with the cocktail of accompanying drugs they give you – feel like a chemists shop! But no complaints, 6 months ago I was psyching up for a second CDT/HDT/Stem cell transplant so very lucky this alternative has turned up.
Penny

[pennylawsonParticipant]

/ Vicki and Colin and others
Hope all goes well whatever your decision. Logged in tonight because I'm going in for SCT on Monday. I've set up a blog at http://pennylawson.blog.co.uk and anyone on here is welcome to follow it, hoping to update it when i can for a blow by blow account of how I get on! Feeling well and strong so here goes..
Penny

[pennylawsonParticipant]

Thanks Eve and Jet
I'm only at the thinking about it stage so far. Autograft planned for June/July, but it has been suggested I could go for a tandem transplant and I'm interested to learn more about the pros and cons. Wish you the very best with yours Jet.

[pennylawsonParticipant]

Hi Mavis. I'm on my fifth 4 week CDT cycle and its not been too bad at all. Still working part time, more tired than normal, but thalidomide makes you sleep like a log. Steroids are the worst bit for me, but manageable. And the hair question…mine has got slightly thinner, and greyer, but that could be just age! Hope you get on OK and you are as lucky as I have been, ie it works a treat. Penny

[pennylawsonParticipant]

Tina and Kay
Great to hear more good rerports of SCTs, thanks. Had a good chat with folk at Aberdeen, nice caring people. My cell collection date is 20th April, transplant late June/early July?? Just want to get on with it now. Would you normally carry on with CDT chemo in between collection and SCT? I've heard different stories, but I would REALLY like a break from the drugs!
Penny

[pennylawsonParticipant]

Stuart and Jules, thank you for directing me to your blog. It's great, lovely pics as well as very interesting first hand account. Glad it all went so well, hope you are still doing fine. Still waiting to find out how soon I can get my SCT, but when I do I'll use you as a role model!
All the best
Penny

[pennylawsonParticipant]

Elizabeth, thank you so much for your post, yours is exactly the type of story I need to hear. It does seem true that there is a huge variety in the way people are affected by SCT, but great to know not everyone has a hard time. Glad you 'sailed through', hope your back problems are improving now too. I am working on getting as fit and healthy as I can just now so I'm strong before going in to hospital.

[pennylawsonParticipant]

A big thank you to all of you for sharing your SCT stories, great to hear first hand experiences and it sounds like you've all been through a lot and come out smiling, mainly at least. I'm going to Aberdeen for the first time to discuss it on 28th Feb, so at the very early stages, but although I've known this was on the cards its only now that the reality is dawning on me. Also trying to work out how to fit work and family life (our kids are 9 and 11) round being out of action for a chunk of time. But I'm grateful for plenty of support from family and employer, plus being pretty fit and strong despite the myeloma – I've got off lightly I think.

[pennylawsonParticipant]

hello everyone
just been diagnosed and very happy to find there are other relatively young folk out there with myeloma, as in some ways I feel 75 rather than 44 since my diagnosis a week ago. I used to run, cycle and walk in the mountains all the time so finding it very hard to slow down, but glad I am fit and young and in a good place to fight this. I will run again!

[Author]

Posts