Hi Carol

No hair!!! Scar on chest!!!,you make me laugh some times,but in a good way,were,s your ozzy spirit.
Tell them to get this thing out,you want to look good on a Ozzy beach!!!!.Eve

Hi Mandy

Why not ask him what he would do if he was in your position,????? But still get another opinion?????,they all have different school of thoughts.

I can only tell you,Slim was basically told,no treatment,would support him so go home and die,he is now being treated by another hospital after a second opinion,and yes we realise he still…[Read more]

Hi Carol

Slim had the opposite of you,when they put it in it took over 4 hours,lot of pain,and because of this when it was removed it was day surgery,it just slipped out,after being in for a very long time!!!

If it’s painful get it removed!!!!,did they realise they left it behind????
It should be a day job surgery.

Don’t,forget to say hello to…[Read more]

Hi Vicki and Collin

Good to see you are still going strong,plus started having holidays!!!if it was me,you would not see me for dust,although I realise things are different for everyone. I suppose it was because are life was one long holiday before Myeloma,or should I say it was just a way of life????

Make the most of what you have got!!!and I…[Read more]

Hi Mandy

The news is not good,but from previous post you new this was going to be that way,Mandy you had no remission so you are high risk and it’s not great for people in this situation, you have good things on your side,you are young enough to have a back to back SCT,you have a family to keep you going,this is all good.

As for lying in a…[Read more]

Hi Jo

Lovely to hear from you.

I miss the holidays as well,but it is out of the question here as well,I did think about trying to book a break in bournmouth at the hotel for cancer patients it’s something to do with the Mac Milan site,but it’s not the sought of holiday Slim wants,in his mind he thinks we can still go in are Motor Home,but with…[Read more]

Thanks all.

We’re going in tomorrow morning for the first lot of dex to go with the start of the 5th cycle of Velcade and Cyclophosphamide. I will be constantly checking for side-effects I’m sure, although I have to go to a conference all day Saturday, which will cause me to worry in other ways. We will both try to keep calm about it as anxiety…[Read more]

Ha Tom I was also awake from 3am to 7am this morning, though I then did crash out for a bit afterwards till 930am. Good old Dex eh?

July is probably a bit optimistic for me too, that would only be I think if I did just 4 cycles and then everything went very fast in terms of tests and admin and faffing around. I’ve already done my harvest so that…[Read more]

Hi Sarah,

Glad it was helpful and thanks for letting us know. I hope the Dex makes the difference. It’s true that even ‘no rise’ is better than the way it’d be shooting up if he wasn’t on it, so maybe it’s zapping some of the clones but not all of them and another thing in the mix may help that. I hope so.

I know you’ve heard this before but…[Read more]

Thanks Maureen,

It is so encouraging to hear of Ian’s progress. I’m really pleased to hear he is coping with the chemo. M has been having physio. He was referred after his second spinal op in order to strengthen his neck muscles enough to stop him needing to wear the neck brace. His neck is doing really well and he gave up wearing the brace just…[Read more]

Thank you Eve, Maureen, Helen and Keith,

Your responses helped me to have a preparatory discussion with my husband before his appointment today, which , I think, helped him to make his decisions today. Unfortunately the PP has not shifted after 3 cycles. The light chains are down a bit but not as much as the consultant expected/hoped. We had a…[Read more]

Hi Jean

Good for you,keep in that frame of mind,never give up,it will take you both a long way,.Eve

Hi Keith

Quick one!!

Get some chlorpromazine tablets from your GP,they stop the hiccups, Eve

Hi Tom,

Yup fully harvested! Bumper harvest in October 2012 so hopefully they’re all safely on ice still.

Not sure yet about timing as it depends how many cycles of VTD I do, and I don’t have any results yet to help me guess that. I think the earliest I’d do SCT would be July, probably later I guess.

Race you!

Helen

Good luck Keith and thanks for posting! I’ll be doing SCT later this year.

Do keep us posted… But only when you have the energy and feel like it! I hope it goes really well for you and is a big anticlimax (that’s my ambition!)

It’ll be we’ll worth it when it’s all over and a distant memory anyway.

Helen

Hi Tom,

Nice to see you’re keeping in those good spirits. I’m on week 1 of cycle 2 so in following along behind you… Also velcade and (lots of) Dex but with added thalidomide, VTD. You’d have been told not to drink on that though, so it’s a good thing you can still drink your pints (and vodka??) Though I did check and it’s not like if you have…[Read more]

Sorry my ipad was being weird so I had to send without finishing and saying bye!
Good luck… I hope results start to pick up.

Helen

Hi sarah,

When I first had Dex in hospital I had some hallucinatory dreams etc, quite scary. I was wary of then having to take it again, but they did flag up to me that it may have been the particular combination of drugs and other issues I had at the time: I shouldn’t assume I would have the same effect again.

I had 40mg for 4 day blocks, for 4…[Read more]

Good luck John! I did the harvest in 2012 but not SCT – they’ve been on nice and I’m now expecting to do one later this year. So I’ll be interested to hear how you get on!

Thanks everyone who’s written on here, I feel like I’ve heard all the medical side effects before in great detail but hadn’t thought through practical/ emotiinal issues like…[Read more]