[andygParticipant]

Hiya everyone.

Just thought I'd post an update on my progress? Lack of progress? Not sure I've made any move lately so I guess I'm stable.
Had my latest visit to the day case unit for blood tests, zometa infusion and to pick up the usual carrier bag of drugs to see me through the next 28 days. My bloods came back as HB 97 WBC 1.7 PLTs 86 NEUTS 0.7 & PPs 19.28 not good but about the norm for me. My neuts have dropped a little over the last few cycles, though they rarely get above 1.1, and are approaching the mark were I will be back on weekly blood tests again tut. Other than the I feel not to bad, tired and achy at times with the usual nausea thrown in at times( thank you cyclophosphamide ) but that's par for the course.
I'm waiting for an appointment for my back operation which has been but back tut.
All in all we're getting along best we can not planning to far in the future but trying to get away now and again whilst we can.

All the best everyone.

Every day is a gift.

Andy & Steph xx

[VickiParticipant]

Andy

As per the previous post, I do hope you get your back op soon….it's so hard when things get delayed as you can ready for it and then bang! It must be very frustrating to see those pesky pps staying around the 20 mark! More sunshine and beer to see of it can give them a kick up the wot sit!

Fingers crossed for you

Vicki and Colin x

[PerkymiteParticipant]

Hi Andy, There isn't a lot you can say to those results. God, (sorry God)you must get so frustrated some times, I know I would. Did I read somewhere that after 18 cycles of Revlimid the Pharmaceutical Company pays for it not the NHS (not that it makes any difference to you I suppose)! Probably got myself confused here.

I am trying with the holidays Andy, I really am. Got a week booked in France in August, curtsey of my Son and Fiancée and we are looking at the Brochure's for the holiday in Greece Sept/Oct. Honest we are trying to keep up 😀

Just taken my Dex it is the last day of my 4tyh cycle for Velcade. I think I get my Pamidronate as well today

BUT it is a big celebration day for Mo and I, today we have no debt. The Mortgage is paid and finally the CAR is our own 😎 with the last payment today. Just Council tax, water rates, Electricity etc… etc.. etc… :-(:-(

Kindest regards – vasbyte

David

[eveParticipant]

Hi Andy

Good to see you are managing with treatment,Slimsoff for now,knocked his plats and neuts right down,needed platelets before op.,just so tired,but at least he is sleeping well,(all the time):-S

Is it just a case of carry on until it no longer works or are they looking at giving you just maintenance .????

What strength of rev are you on,or does it go on your blood results before they decide that each month.???

Well for all your treatment the beer goes down well,so there are a few good things,think positive!!! That what I am trying to do,some ways dreading Friday,in other ways want it over and done with,! Better leave you to plan your next holiday:-| Love Eve

[VickiParticipant]

Hey David

Good on you with those holidays! It sounds like you've got those plans well in hand. How are you doing with your treatment. Are you feeling ok on the velcade? Congratulations on being debt free…..oh not to have a mortgage 🙂 I d old travelled through France, not been there actually, so hope you enjoy it. What part are you going?

Eve, hope you are ok and your positive outlook is paying dividends! Not always easy is it. Hope slim is managing to stay on an even keel 🙂

Vicki and Colin x

[tomParticipant]

Hi Andy & Steph

Well bugger it but at the moment stable is good am sure.
Here I am in remission and keep up with your shanaggins and flying here and and their.

I bet at times you get pissed off with it Andy and Steph ? but you cope with it with strength and determination, good on you two.

Get on internet and get that next Holls Booked.

Love Tom Onwards and Upwards xx

[andygParticipant]

Hi all.
Phew I'm Dex free now till my next cycle 😀 just waiting for the crash now :'-(

David – like I said in the original post those results are the norm for me and are the results I have to live with and I'm bloody well going to live with them 😉 though I must admit my neuts do make me a bit nervous.
I've been told at the day case unit if I get to cycle 25 then the Revlamid becomes free to the NHS. A goal to aim for but still not on my radar yet – I have my radar set a bit closer to home than that.
I'm glad you are getting on with plans for some holidays away I do think they give a you boost and a break from MM though they can be a bit nerve wracking at first being away from you usual medics.
Massive congratulations to you and Mo for becoming debt free 😀 what an achievement.

Eve – I'm on this regime until it stops working. Then it'll be a mad scramble to see if they can find anything else to keep the MM in check! I'm on 25mg of Rev 21days/cycle, 500mg Cyclophosphamide days 1,8 & 15 and 40mg Dex days 1-4 The only adjustment is if my neuts go down to 0.5 :-S then I stop the cyclophosphamide for a week. My beer intake goes up and down with my nausea – thanks cyclophosphamide :'-(

Vicki & Colin – I'm resigned to the fact that my PPs aren't going to dip much further I'm just happy they're stable and hopefully the drugs, sun and beer will keep them that way.
It's annoying that my back op has been delayed because it stopped us going to Belgium last weekend. No losses were occurred but still!

Tom – stable will do for me. After all you are stable too 😉 in a stable remission lol and long may you stay that way.
I try not to get p***ed off because it doesn't achieve anything and is a waste of energy BUT lol and I think Steph worries around blood test time as I do as I think the majority of us do but there's not a lot we can do about that.

Holidays, breaks and beer booked to date.
End of Sept – week in Greece. 😎
Early Oct – 3 nights in the Lakes 😉
After the Lakes off to the Nottingham beer festival 😛
And before the end of the year a weekend in Belgium to be booked no confirmed date as yet.
All the above are provisional and rely upon the skill and professionalism of my wonderful NHS medical team and the drugs they so readily supply me.

This ain't a rehearsal lets get out there and give it our best shot!

Every day is a gift

Andy & Steph xx

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