[andygParticipant]

Hi all.
It’s been awhile. Probably since my last DEX night! Anyway I have begun my 8th cycle of Pomalidomide and Dex. Adding to Gideon Osborne’s deficit problems.
I got my blood test results from Friday. HB 126 WBC 3.2 and Neuts 1.3 not too bad for me.
Though the stunning reading was my PPs 8.48!!! That’s a new record for me so I went out and had a few beers with Steph to celebrate.
Oops battery running low better finish up.

Every day is a gift

Andy xx

[meganjaneParticipant]

Hi Andy,

It is such good news, Phil and I are both so happy for you. Long may it continue.

Megan

[elsshepParticipant]

Excellent news and I think you certainly deserved those few beers:)

[PerkymiteParticipant]

Well done Andy, just keep going, keep bl**dy well going.

I had the suspicious scab cut out of my head two days back now. Still sore, I have the stitches out in about 7 days. When I will get the results I do not know. I suddenly realized walking around the hospital just how many old men seem to have plaster patched on the their heads, just like mine. I wonder if I have uncovered some sort of macabre ritual going on among the Doctors! Joking just joking, I think.

Kindest regards – vasbyte

David

[PhilipandfionaParticipant]

Bloody marvellous. Keep spending our taxes as long as you can’t. It’s certainly better than police and crime commissioners!

[AliParticipant]

Andy, marvelous news for you. Seems the regime is good for you. As David says …just keep going x

[andygParticipant]

Hi all.
Well I’ve been celebrating my PP result for the past week 😉 sunk a few beers in that time. Gideon Osborne will be pleased with the tax take off mine and Steph’s drinks.
I’m obviously hoping that the Pomalidomide keeps working for a long time yet but you never know with myeloma. I’ll see what my consultant says Thursday. Got to remember to order my holiday drugs off her some of the ones I have have passed their use by date.

David, I’m going to look out for plasters on old men’s heads when I’m at the hospital and nod at them sagely.
Right – I guess I’ll have to keep on going 🙂
Thanks for the support.

Every day is a gift.

Andy xxx

[scott9Participant]

Hi Andy

I’m reading your posts with particular interest. My SCT has stopped working and it looks like I’m going onto Pomalidomide and Dex. Have you been on that for the past eight months? What nasty side effects have you experienced? Has your consultant got anything on reserve if and when that mixture stops working?

Keep fighting

Scott

[andygParticipant]

Hi Scott
Sorry for the delay in replying.
Just finished my cycle 8 and I’m on Pomalidomide and Dex. So that’s 8 28day months. I’ve not had any nasty side effects to report. Just the usual Dex highs and lows. I take 40mg of Dex once a week every week.
My consultant tells me she has things to try after Pomalidomide stops working though I’m a bit sceptical and I think I’ll be put on to older harsher drugs with the accompanying side effects. I’ve not got a good track record with drugs and I’ve been through most if not all the standard treatments and only Revlimid and Pomalidomide have worked for me.

I hope you get a good result with Pom/Dex it’s an expensive treatment and is only available through the cancer drug fund at the moment – good luck.

Every day is a gift.

Andy

[scott9Participant]

Many thanks for the information Andy. I’m due to start Pom/Dex tomorrow and I’m down for 8 cycles. Hopefully it will work for me as well. I’ll make a post in a month or so to report on progress as this will probably be of interest to one or two fellow afflicties.

As you say every day is indeed a gift and must be enjoyed to the maximum. Worrying is for wimps 🙂

Scott

[mhnevillParticipant]

Hi Andy

So pleased to catch up with your very encouraging news. So glad you ans Steph are able to celebrate in an appropriate way!!

Do hope you can plan another trip soon.

Very best wishes. Yes, every day is a gift!

Mavis

[BabsParticipant]

Hi ANdy,

I read with interest how you are doing on Pom/Dex, I am finding it exactly the same, the Dex is hard to swallow, 20tablets each Friday is so much harder for me to do than 10 each day for two days I was on before with velcade-which didn’t work at all for me.I always sweat badly when eating my main meal on the Friday, be it lunch time or evening meal, trouble sleeping, wake up really early and very hungry all the time, then the lovely moon face on Saturday. The chemo however seems to be giving me no side effects! I just hope it works, I will know on 7th November, I have light chain myeloma which measured 2732 after velcade they hit the heady heights of 4000! Surprisingly I look and feel very well but cannot tolerate pain relief, I have tried tablets and pain patches but both made me tired and zombie like, so it’s back to good old paracetamol for now and resting when the pain gets bad.
Sorry for long post but I am steroid full tonight, makes us ramble.
Best wishes to you
Babs

[andygParticipant]

Hi Babs.
I’m half way through my 9th cycle now. My PPs are stable for the moment.
It’s my steroid night but I will try and keep this post short and to the point and not ramble on to much! Oops there I go.
The steroids are the main down side of my Pom/Dex. I feel the best since I was diagnosed I’m eating and drinking well. I can actually taste things again. I’m also told I look well too.
I know what you mean about the pain relief when I’ve been hospitalised with back pain the drugs they gave me made me feel like a zombie I wasn’t interested in anything. I now try to limit the pain killers I take and when I need the big hitters I take them for a short a time as possible.

Hi Mavis.

Got a trip to Greece coming up and after that a trip to the lakes is also in the pipeline.
Every day is gift.

Andy xx

[IzzieParticipant]

Hi – you lovely people out there – not been on for quite some time. Had my stem cells replaced on the 9th may – spent rather a gruelling time in hospital – went back to Hallamshire on the 21st August to be told I am all clear – a trace of paraproteins – too small to measure. Yippee!!! Does this mean I can say I am in remission? The consultant never used the word and I was so teary all the questions I wanted to ask went out of the window!!

Also has anyone any telephone numbers/ websites for holiday insurance – my husband definitely deserves one.

Love to all
Keep strong for our never ending fight
Izzie

[mhnevillParticipant]

Hi Izzie

Someone else not sleeping! And I can’t even blame it on Dex! Like Andy, I find the balance between pain killers and feeling zonked during the day, and then awake at night, a hard one to find.

I am so pleased to hear the SCT did its magic for you. It is funny, some Consultants don’t like to use the word “remission”, but that must be what you are in! Long may it last.

Do take your holiday. It is important to do these things while you can.

I couldn’t get insurance, but know plenty of others have.

All very best wishes.

Mavis

[Author]

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