[wendyduffieldParticipant]

Hi Eve

I suppose if Slim is still having bloods and platelets it makes sense to keep it in rather than cannulating every time. I hope it doesnt take 4 hours to come out. Mine took about 45 mins to an hour to come out. It is not as horrible as having it put in and such a relief to get it out.

Wendy

[wendyduffieldParticipant]

Hi Eve,

mine was taken out about a week after I came out of hospital. They would have taken it out on the last day of my stay but there was no doctor available to do it. It was only put in on the day of my admission for the transplant. I think my hospital like them in for as little time as possible because of risk of infection.

Wendy

[wendyduffieldParticipant]

Hi Helen

Your new cut sounds fabulous and has inspired me to do something with mine as I havent had mine cut for about 12 months (and that was a crew cut in readiness for my transplant!). My hair previously dead straight and fine has grown back thick with ruffles, waves and curls, it really is quite mad looking and I dont know what to do with it!

I would like to keep the curls, but not the ruffles! Any ideas?

[wendyduffieldParticipant]

Hi All

We seem to have moved away from the 3 litres a day post on to holidays,
a much better topic in my view! I agree with Dai, going on holidays especially whilst on treatment can be tricky and difficult. Its all about confidence building and Tom, I think you're right too, little and often to start with.

The first time I went away for the weekend just to the lake district whilst on treatment was awful. I didnt feel safe, miles from any hospitals, couldnt really do anything as I wasnt up to it and missed the safety and comfort of my home enviroment(and being only 3 miles away from my hospital). I think it was too soon. There is the added stress of wanting to have a good time but not having one and being disappointed. I progressed to driving down to Ross on Wye to visit my parents another weekend but that wasnt great either as I got shivery and a high temperature whilst I was there and then had to drive back feeling unwell.

I then got invited to the Algarve to spend a few days with some friends at the tail end of my last treatment cycle. I got the go ahead from my consultant and some travel insurance but nearly backed out at the last minute because I wasnt feeling that well and didnt want to be a burden on my friends and spoil their holiday. In the end I did go and had a good time, felt safe and didnt feel like a burden but I picked up some bug and when I got back ended up in hospital for 4 days with chronic diarhorea!

But all this was confidence building and I flapped less about going away, and in my break between stem cell collection and transplant went to the Algarve for a week and had a great time.

After my stem cell transplant in September, I made quite a quick recovery and had a few weekends away then progressed to longer holidays this year.

Gill, the fungus thing in your lungs sounds awful and I hope you get over it soon and can enjoy your holiday in Cornwall. It sounds like a good first start, without too much stress and I hope you get some sunshine.

And Vicky and Colin, I hope things are better soon and hang on in there.

Wendy

[wendyduffieldParticipant]

Hi Ian

I am really sorry to hear that your mini allo has failed, I cant understand how this happened given your blood tests were so good and that you had achieved 100% donor chimerism. You must be pretty pissed off. It goes to show that not enough is known yet about this procedure and whether it is worth the risk.

Anyway I hope the Velcade and the radiotherapy does the job and you are not in too much pain.

Take care

Wendy

[wendyduffieldParticipant]

Hi Helen

sorry I hadnt read your postcard. Your holiday sounds great,shame tht NZ is such a long way away. After completing the Manchester 10k run on Sunday 20th May I took myself off to the Italian Lakes and Switzerland for nearly two weeks and had a relaxing time, cruising up and down the lakes and enjoying the scenery, food and wine. Nothing further planned yet, though the Inca trail sounds amazing! What a challenge that would be, go for it I say

Love Wendy

[wendyduffieldParticipant]

Hi Jean

I had horrendous problems on thalidomide in my first cycle after about day 14 when the Consultant told me to up the dose from 100 to 200 mg. I got a horrendous skin rash, fainted a couple of times, was shakey and had nerve damage,not in my feet and hands but in my back and head. It was stopped for about 4 weeks unti I recovered from the skin rash, then I went back on it at the lower dose but still had this nerve problem, the shakiness. I was probably a nuisance to my specialist nurse ringing up most days with complaints and in the end my consultant told me to stop taking it and they came up with an alternative which included Velcade. That I was able to tolerate a little better but they are all horribly toxic drugs and it is a balancing act. I am not sure I agree or even my doctor agrees with the whatever it takes approach if the side effects are too awful.
.
I would think that as a first response they may decide on a reduction to the dose as you dont mention what dose he is on rather than switch straightaway to something else. I hope it goes ok tomorrow.

Wendy

[wendyduffieldParticipant]

Hi
Yes Mavis I know exactly what you mean, as a single person with no children I really dont fancy growing to very old age and since the government increased the pension age I will have to get to 68 years old in order to get my pension, so that would be 18 years post diagnosis. I know the life expectancy is improving but would be very surprised if I got to 68! But it is quality not quantity that matters to me and whilst I am here I want to make the most of it.

Helen, I did opt to go on the Myeloma XI trial and was assigned Thalidomide but had to stop taking it and subsequently come off the trial due to the unacceptable side effects I was experiencing.

Wendy

[wendyduffieldParticipant]

Hi David

Revlimid is not licensed as a maintenance drug by NICE at the moment so unless you are on the Myeloma XI trial and get assigned it post stem cell transplant you cant get it. This is a shame in the light of the recent clinical studies that show that it prolongs remission (effectively doubles it). I know this because I asked my consultant and she looked into it and says it would be beneficial for me but cant get funding for it. NICE are appraising it but await the outcome of the Myeloma XI trial as they dont regard the recent studies as big enough. So unless you can afford to pay for it yourself at around £4000 per month, you aint gonna get it!

On the plus side its nice to be drug free isnt it?

Wendy

[wendyduffieldParticipant]

Ha Ha Tom, I dont think Vodka and Red Bull count towards the 3 litres and neither does my large glass of red wine now and then!

Ted it doesnt have to be water so you can make it up with fruit juices, dilute with squash, drink herb teas but not ordinary tea and coffee or alchohol as that dehydrates. I would ask the doctor at your next check up whether its a good idea for you to drink 3 litres a day. I have got into the habit of it but wondered why I was doing it so thanks Helen for your reply. How was your holiday btw?

Wendy

[wendyduffieldParticipant]

Thanks for your support all, Dai, I managed to trundle round in 68 minutes! It was one hard slog though, much harder than I remember when I did it in 2009 but when I found out my time it was the same as 2009 before all this started so I am really pleased. I thoroughly enjoyed the buzz of doing it, the support of the crowd, and have so far raised nearly £1000 for Myeloma UK in the process. I cant walk right now but it was worth it! Photos to be uploaded in due course. Hopefully I'll be back in 2013!

[wendyduffieldParticipant]

Hi Rosie

Sorry to hear about your relapsing after 4 plus years, I had a stem cell transplant last September and dread each 3 monthly blood test but so far so good but way to go. You dont say how old you are and I dont like to ask but I guess it is relevant to your treatment options! You could ask your consultant at your next appointment what alternatives he could propose to another SCT and what remission you could expect to get out of a second SCT because I understood it was about half of the first one.

Keep posting
Wendy

[wendyduffieldParticipant]

Hi Mari

its mmunder50club.ning.com

Wendy

[wendyduffieldParticipant]

Hi Helen
Hope you have a great trip to New Zealand, sounds wonderful

Wendy xx

ps loving the hair!!

[wendyduffieldParticipant]

Hi Andy

good news that your blood tests are all OK,at least your body is coping with the high PP numbers, I hope that the revlimid and the dreaded dex will sort out the paraproteins in time.
Keep us posted

Wendy

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