[andygParticipant]

Hi everyone.
Just been to see my consultant after blood tests earlier in the week. I'm a bit pi.. errr cheesed off! My paraproteins are seemingly very resilient. 🙁 A week spent in hospital on DT Pace had no effect on my levels so yet again my treatment has been changed ( can not be many left! ) I'm now on Revlimid and our old friend Dex. I'm starting to think I'll never get my paraproteins to a level low enough for a sct. I know the MM road isn't smooth and not easy but a little good news wouldn't go amiss now and then.
Anyway from now on everything will work and those pesky pp's will have met their match.
Wishing you all well
Andy

[mhnevillParticipant]

Hi Andy

Sorry things aren't going as hoped with treatment. I can understand just how frustrated you must have been to have spent all that time in Hospitasl hooked up on infusion for it not to have the desired result. Might it have a delayed efffect? I am sending many positive thoughts and prayers that things can move towards a SCT soon.

Turn lots of those angry feelings at those perisher pps! If anyone can move it on, you will.

Love

Mavis

[DaiCroParticipant]

What's your pp score Andy? Any movement at all since diagnosis? Have the medics indicated a figure for going ahead? Its good that there's no upward movement anyway… it sounds like your pp's need some sort of a kickstart in the right direction… perhaps you can get them to lick the equivalent of a PP3 battery.;-)

Let's hope the Rev & Dex do the trick so you can move on to pre-harvest.8-)

Best wishes.

Dai.

[andygParticipant]

Hi Mavis and Dai

Mavis I am turning my anger on to the pp's but I'm also hoping the drugs will help out a little. Thanks for the good wishes 🙂

Dai my pp score is in the mid 30's it was just over 50 at diagnosis – I think. CDT got them down to the mid 30's but no matter what treatment I was on they refused to go lower!
Ideally they want me below 10 before a SCT so there's a way to go.
Hopefully Rev and Dex will be my PP3 battery and set me on my way to a SCT. 😉

We will fight them – pesky PP's
Andy

[eveParticipant]

Hi Andy
Sorry to here your news,this just might be some help to you!!!!

In the under fifty ,s there is a chap called Mike Barker who,if i am correct has SCT when his PP were high,again if i read about it correctly,he decided with his consultant to go ahead with SCT.
It might be worth checking his post!!! I do not think he has posted for some time,but he does tend to reply if you contact him.

Hope this might give you a boost,
Try to hang on to the fact this Myeloma is very individual,Slim is now in his 14 months of treatment and only just going for SCT,yet other people are a few months with Myeloma and are having SCT.
Its should be all about individual treatment for the person with the individual Myeloma,but NICE has to much say in deciding treatment.Eve

[tomParticipant]

Hi Andy

Well you have some stubborn pp's aint you?

I hope you soon get the pesky things sorted asapget in and get that SCT underway, you know amsending you great vibes for it all to happen, hang in there Andy its an uphill struggle but you will do it:-)

Tom "Onwards and Upwards" x

[PerkymiteParticipant]

That is the spirit Andy – Vasbyte – go get em boy.

Kindest regards

David

[andygParticipant]

Hi all
I start my next round of treatment today! So last night we went out for a drink for only the second time this year 😉 We saw a good band and I had several pints of real ale 🙂 We've come to the conclusion we're going to live life as much as possible or as much as my back will allow.
Planning to take a trip to the lakes later in the month as well. To celebrate being married for six months, we went there after our wedding, and Steph's birthday.
Don't know if I told you but I was told I had myeloma 3 days before we were married which we kept to ourselves till after the wedding.
Anyway back to now I forgot to as my consultant or nurse is alcohol allowed when on REV & DEX? Please let it be so 😉

Live life to the max
Andy. XX

[ElizellenParticipant]

Andy wrote[quote]Live life to the max![/quote]Great positive attitude, Andy!!

Eliz
XX
X

[tomParticipant]

Hi Andy

Good Luck for this round and am sure Like Ali you will whup its Ass 🙂

As for the drink?? well you had to ask dint you lol. I drank all through My treatment didn't cut down was at it 6 nights a week and drunk a Litre bottle of Vodka per week (well I dint have to get up for work lol)

My Motto is get out and get some in you need to drink 3 lts a day 🙂 it worked for me as I sit here in remission and good health 🙂

All the best with it Andy am sure you will crack it M8

Tom "Onwards and Upwards"

[DaiCroParticipant]

Hi Andy,

I really hope that Rev & Dex do the trick and get your pp's down to a workable level. Have they indicated the maximum allowable before treatment?

Before leaving Wales to seek refuge in Nottingham for mm treatment I was a 'Folk-Tales' CD story publisher and erstwhile Landlord. I feel proud of my achievement of being recognised and certified as an award winning (CAMRA & the breweries) 'Real Ale' pub… including a mini-festival of real ales at the annual 'Fishguard Folk Festival'… with a choice of 20 real ales. I always had at least 2 'Guest' real ales during the extremely quiet winters and at least three during the summer… as well as my 'house' real ale, 'The Reverend James' (ABV 4.2).8-)

I had 2 small glasses of wine last Xmas and 2 more the Xmas before… and that's it for me. I take a total of 120mg of time-released morphine as well as Gabapentin for my PN.. and as I understand it alcohol is a 'no-no'. If anyone knows different I would be glad to hear about it.. I would love a pint or two of real ale again… although, to be fair I have always had a low alcohol threshold… 4 pints and I am under the table… still…;-)

Dai.

[OutdoorsPaulParticipant]

Hi Andy
I asked my consultant about alcohol and she says 2 small glasses of red wine is allowed on a weekend.(or equivalent)
Personally i think your body will tell you whats right, and going out every so often is a good thing.
I am currently on valcade,Dex,Doxorubicin and on 1 week take all three and my sense taste goes completely out of the window!including alcohol.So on my week off meds I have a treat Fri/Sat.
Something will work
cheers Paul8-)

[DaiCroParticipant]

Hi Paul,

Velcade worked for me (at least while I was on it) but it was not the most pleasant of experiences with several nasty little side-effects issues/ Sense of taste was one of them… out of the window, I could have been chewing cardboard… but like you my buds revived during the rest week. :-/

I see Velcade as a bolt-cutter… it knocks mm for 6… but only just long enough for other treatments to be used (i.e. an SCT).. and not a viable long-term remission bringer. Carfilzomib, Velcade's little brother, seems to be another kettle of fish… treatment lasts 18 months, with few side-effects and apparently it knocks mm out of the park and into the river.. allowing maintenance therapies, such as Rev & Dex, a good innings.8-)

Enough of the cricket metaphors, I'm a rugby man.;-)

Dai.

[BADGERParticipant]

hi Andy

I am not a big drinker but I drank real ale and red wine in moderation all though my CDT i SEEMED TO BE OK
GO FOR IT;-)
lOVE jO

[DebsParticipant]

Hi there.
Just couldn't help but come in on the alcohol question 🙂
My consultant said when I was on revlimid that I could have a couple of drinks but that I probably wouldn't want to!! Boy was she right…couldn't even face champagne! Then when the revlimid stopped working (my pp had come down from over 50 to 28), I went onto revlimid….I drank a bit more on this on the one week when I felt well enough to. Dai, I drank on gabopentin and oromorph?? I don't think it did me any harm but I think you just need to be careful the first time to see how it affects you? It all seems so personal…..but to be honest, I think I'd cry if I was never allowed to drink now!!!

Andy, possibly more importantly, when the revlimid stopped working with me, I was randomised and had it been picked differently, they would have put me straight through to SCT with a pp of 28. I was worried at the time, but my consultant at the Royal Marsden, didn't seem to think it was risky. Perhaps I should ask her now (further to having my SCT after velcade and my pp coming down to 8) whether she would have really been positive or whether it was just to get me to go ahead with the trial :-S

ANyway, I really hope that the revlimid works well for you and gets those pp's a bit lower still.

Take care
Debs (with a nice glass of ice cold white wine in my hand on a Sunday afternoon) xx

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