[andygParticipant]

Hi all.

I haven’t been on here for a while so here’s a little update of my     journey.

Since my little episode with pneumonia my PPs have been creeping slowly upward. I got my latest results today and my PPs are now 19.2 all my other results were good so my treatment is staying the same.

Unfortunately I also have a little lump on my head that needs removing that maybe cancerous though that won’t be established till it’s been removed and analysed.

Other than that everything is rolling along as normal or whatever passes as normal for me nowadays. So yes that means Greece again next month as long as my little op doesn’t get in the way.

Every day is a gift.

Andy xx

[mhnevillParticipant]

Hi Andy

You can tell a lot of us “old stagers” are not on here often these days in that no one has replied to you!

Great that you are still getting treatment that is allowing your new normal to continue! Do hope you get to Greece and have a great time. Just imagine, four years ago these drugs weren’t in existence. As you say “every day is a gift”.

I had a bit of a shock at my last Consultant visit. A different Doctor as per usual. An hour and a half late in, the last ten minutes because, according to the nurse, he was reading my notes!

I go in and he says your pp level has gone up slightly again. I say “again” I thought it was still not showing last time. He said it had been 2 then and was now 4, but don’t worry as you don’t need any treatment yet. I said my surprise was that I hadn’t been told of the rise last time. His bald reply “well you know there is no cure!” Not the NHS’s finest moment for bedside manor. I sometimes think I know more about this than the Junior Doctors.

Anyway, that’s me. Hopefully only a very slow rise. I shall ask to speak to the Specialist Nurse next time I go. My bone pain has been much worse since I had to come off Zometa infusions. I am wondering if rise in PPs is also related to this.

As Consultant said rightly, I did know it would return, but let’s face it, we all hope to beat the odds. You certainly are.

Do take care. I need to hear from time to time that you are still battling on.

Love.

Mavis x

[annlynnParticipant]

hy mavis and andy long time since i saw a post from either of you ! pleased your still holidaying andy . just picked up on your post mavis about zometa and back pain. i was tolld last month protiens rising abet slowley. but still rising then this last two weeks. my. back pain is. back with a vengence right. hip and left upper back especialy if i lift my arm feeling a. bit. worried about w h ats next. but im. sure. second line treatment. must be on the. cards i do hold on to the fact second. treatment isnt the end of the world and lots of the older posters have had to have it and are still doing ok so fingers crossed annlynne

[annlynnParticipant]

Hope you got. to. greece andy and enjoyed every minute of it. im looking. for something for. early october. hopefully get. my. back. problem sorted. f irst best wishes annlynne

[andygParticipant]

Hi Mavis & Annlynn.

I’m writing this whilst relaxing by the pool! Yeah I’ve made it to Greece a bit different from this time last year when I was in ICU!

I’m now on cycle 35 of Pom & Dex I think. My PPs have dipped just under 19 so hopefully I’ve plateaued again time will tell. I’ve been off Zometa for a couple of years now due to ONJ but when I raised my fears of not having it at last years Info Day I was told even when Zometa is stopped it stay in the bones for a long time.

I always convince myself every rise in PPs is just a blip, mine have blipped up from 8.5 to 18.6 now lol, and that next month they’ll be down again. As far as I know they do restart treatment, or in my change treatment, until there’s other indicators – eg blood tests start to go off.

Anyway I hope both of you are just having blips.

Time for a beer I think – Yamas

Every day is a gift.

Andy xx

[annlynnParticipant]

nothing to do with myeloma andy but is the weather in greece still good end of september do you know .Never been to Greece just Rhodes a long time ago but fancy it instead of tenerife x. annlynne

[andygParticipant]

Hi Annlynn.

The weather can be a bit hit and miss at the end of September here in Kefalonia. Kefalonia is one of the furthest north of the Greek islands. The southern most islands will be ok though.

Andy xx

[stanley-1960Participant]

Hi Andy,

Great to see you on your travels again and enjoying the odd beverage. Decided to take a leaf out of your book and off to Gran Canaria today for a golfing holiday with the lads. We may also take in a few trips to the local drinking establishments. Well it would be rude not to really. Hopefully your PP’s are on the way down.

Best regards,

Stanley

[andygParticipant]

Hi Stanley.

Hope your trip to Gran Canaria goes well. We’re back home now, got home Sunday night, getting back into the old routine of hospital appointments etc.

Got to say I do find getting away really is therapeutic and gives you chance to bury thoughts of MM for a while.

Hi Annlynn.

A weather update. A couple of days before we got to Kefalonia they had some really bad storms. Closed the airport for a while. When we were there the weather was great. The day after we left they had a similar storm and a minor earthquake.

Maybe our luck is changing lol.

Every day is a gift.

Andy xx

• This reply was modified 8 years, 1 month ago by  andyg.

[stanley-1960Participant]

Hi Andy,

Thanks for the reply. Had the most fantastic time. Stayed out in the sun too much, played golf too much, drank far too much, enjoyed great company too much, spent too much, deprived myself of sleep too much, punished my body too much, but through all that i diddnt think about mm too much ( well not at all really). You were so right about the theraputic nature of getting away.

best regards,

Stanley

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