[DizzylizParticipant]

hi carol,

kev had his hair shaved off by one of the nurses as it was falling out all over the pillow, we will never know weather it would’ve all fallen out but 3 months after sct it was growing to my relieve although he’s always had it quite short, I’m thinking some good old ozzy sunshine will do the trick! bet you can’t wait, you’ve done really well and hope you continue too! hope everything goes ok for your return to work and you listen to your body,

keep well love liz & kev xx

[DizzylizParticipant]

hello jeff,

glad to hear you are doing well on the new treatment, kev is now on cycle 14 of rev/dex and his reading has been stable at 10 for a while, i think he is coping well with the treatment and getting very few side affects and settled, the dex is another thing though (highs & lows)not nice! were even thinking of booking a little holiday abroad. your readings look good and rev/dex seems to have kicked in pretty quick and long may it continue jeff, velcade didn’t work for kev either, they had to reduce it to a level where it was not working and his counts went through the roof! the reason was the terrible peripheral neuropothy he got still to this day, so all the best on this next stage on this myeloma journey jeff, keep well.

regards liz & kev xx

[DizzylizParticipant]

Hello eve,

Really happy for you and slims continued good results, only popped in as I haven’t been on for a couple of weeks, kevs had an unexpected hospital visit! High temp: and very bad diarrhoea which we think is related to his treatment revlimid as this is getting to be every cycle, so now the hospital are keeping a close watch as he is on cycle 14 they say the longer he’s on rev/dex the more likely he’s gonna get more side affects, and we’ve all,grandchildren too have had some sort of flu’ey bug! But fingers crossed alls well and kevs enjoying today in the garden and hope you and slim are doing the same.

I bet your both looking forward to the family coming!
Keep well eve & slim love liz & kev xx

[DizzylizParticipant]

Morning Eve,

Oh eve I’ve always admired your written word and your sayings ( say it as it is) I must admit I’m rubbish! I’m so sorry to hear slims prognosis and glad your not giving into this ***** MM
And getting a second opinion, I’d certainly do the same if kev were in the same situation, Eve you come across as a very strong and together person and I as kevs carer take strength from this forum and people like yourself.

Keep well, love to you both

Liz & kev xx

[DizzylizParticipant]

Hi carol,

How are you feeling? Hope everything is doing what it should be.
Just thought I’d check in to see how you are?

Take care liz & kev xx

[DizzylizParticipant]

Great news david! Long may it continue.

Love liz & kev xx

[DizzylizParticipant]

Hello Trigger,

I’m a carer for my husband kev,he was diagnosed August 2010 aged 55, after 6 months CDT went on to have sct march/April 2011 but only got 7 months compleat remission and been on velcade/ dex and now on rev/ dex and stable or plateau’d for the last year!

Sorry to hear about your mums situation but has your mum been given access to a myeloma nurse? Who from our own Experiance helped with all our questions and concerns, even now it’s who I would ring for advice as well as I’d echo what eve said and contact Ellen at myeloma uk.

As you can see there are a lot of different options in treatment and I hope you can soon get both you and your mums concerns a lot clearer as to which treatment is best.

Best wishes to you and mum. Liz & kev xx

[DizzylizParticipant]

A mud pack! Not that I need one nor kev, but I’ll be interested in your answer?
LOL!

Liz

[DizzylizParticipant]

Hi Andy,

Sorry to read about your hospital stay, hope everything will be sorted and your back on treatment, these infections and temperature spikes are always a worry and Steph was quick to act I would’ve done the same!

Keep well love liz & kev xx

[DizzylizParticipant]

Hi Richard, glad to read your finally home and you continue making good progress!
Keep well

Liz & kev xx

TonyF congratulations on one year sct keep well!

Liz& kev xx

[DizzylizParticipant]

Hi Tom,

Those dex days! Kev takes his early morning but he still gets his wide awake night, although they reduced his from 40mg to 20mg the only difference he’s noticed is his down days happen quicker which he’s not happy about but there not so powerful (if you get what I mean) but he gets a couple of good days and we try and live a normal life as we can and things seem a little more settled!
Are you still able to carry on working Tom? Or has the treatment stopped you?

Take care love liz & kev xx

[DizzylizParticipant]

Hello David,

Glad you got the right diagnosis in the end, these DVTs are a side effect of revlimid and kev as always taken aspirin from day one, he did have a scare when he had one of his chest infections, the dr said they can cause small ones to collect in the lower lung, but sometimes people cannot tolerate aspirin, I suppose it would be better if you could get off the injections and onto tablet, so here’s hoping your soon feeling a lot better!
Keep well.

Love liz & kev xx

[DizzylizParticipant]

Hi carol,

It seems such a long time since kev had his sct but I can remember he wanted to sleep a lot,
But he also remembers the nurses & drs bombarding him with tests blood transfusions Ect: but I kept telling him it’ll all be worth it but then he’d fall asleep! Hang in there carol and here’s hoping the next few days won’t be too bad,

Take care thinking of you liz & kev xx

[DizzylizParticipant]

Hi Andy,

Granthams not too far from me and as for beer festival to say its only 10 mins away and never been to one! Always wanted to but never got round to we will have to try and go am sure kev would enjoy, As for those dex days kevs is a Wednesday so no sleep tomorrow night that goes for me as well so we end up getting up rather early then crashing late afternoon! But we just get on with it and take it in our stride it’s become a routine for us now.

Glad to hear your treatment is going ok take care and keep well
Love liz & kev xx

[DizzylizParticipant]

Hi carol,

Thinking of you over the next few days hope it all goes well and the side effects aren’t too bad.

Take care love liz xx

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