[andygParticipant]

Hi everyone.
Well it's been a while since I last posted so I thought it was time for a little update 😉
I'm now on monthly visits to the day case unit due to my Neuts being fairly stable – hovering round the 1.0 mark – not great but not moving much in either direction.
At the end of my 11th cycle I left the day case unit for my first 4 week break from the place since diagnosis in Oct 2011 after having my blood tests and Zometa. My bloods were ok, not great, but ok. Didn't get PP's results because they take a day or two longer. Usually got a phone call with the PP's results and anyway I'd be there a week later. I didn't get a call so I thought no call no problem so forgot about them.
At the end of my 12th cycle i went back for bloods, zometa and my carrier bag of drugs :-/ felt I had to reintroduce myself after not being there for so long 😀 My bloods were again ok for me! I asked about my last PP's result from cycle 11 and they and risen from 18 to 22 not a big rise and my consultant wasn't worried, but those who know my story know how long and how hard it's been to get my PP's down to that level so it was a blow to me and my wife. That was Friday 8th march today I got my end of cycle 12 PP's results and they were 19 so smiles all round 🙂
Started cycle 13 RCD Sunday and I'm having a Dex induced sleepless night :-/ hence the time of this post.
We've got a trip to the lakes next week and have booked a week away in Greece in May hopefully we won't see any snow.
Keith if your looking in we missed you at the support group last night we hope your ok and the new treatment does the business and gives you some relief from the relentless hospital visits you're having to endure.

Good luck everyone with all your personal journeys.
All the best
Andy & Steph x

[mhnevillParticipant]

Dear Andy

Just to say all the best with the continued treatment. Do hope you are both ablt to enjoy your planned breaks.

Best wishes.

Mavis

[tomParticipant]

Hey Andy and Steph

Looks like it will be another nite out for you two 🙂 to celebrate
Shame you didn't see keith, I also wish him Good Luck and fingers crossed that the treatment works for him
Tom Onwards and upwards x

[andygParticipant]

Thanks Mavis and Tom.
I've been told by my specialist nurse if I make it to cycle 25 Revlamid will then be supplied free for me to the NHS. Now that's a goal to aim for. 🙂 Though it'll cost the NHS a canny bit to get me there lol.

Andy on Dex :-/
😀

[VickiParticipant]

Andy and steph,

Good to hear from you Andy, wondered what you had been up to. Glad it's not infection hospital visits! Those pps are pesky aren't they! Still so glad they have gone down again though! Hope you have a great time in the lakes, well as for Greece am certain that sunshine will make those pps come down still further! Colin is doing quite well, been to work 3 times this week and seems to be less tired. It's me that has been poorly this week……vertigo (labrynthitis) or something, going a bit now but it's horrible and never had it before…..inner ear problem so Colin has had to look after me 🙂

Take care and enjoy your hols 🙂

Vicki and Colin x

[tomParticipant]

Hey Andy thats good so you say if you reach a a point then the drug company pay ALL cost of the drug??

Tom Onwards and Upwards

[andygParticipant]

That's what I've been led to believe Tom.
Mind you it's still a long way off but I'm hoping to get my free Revlamid 😀

Hi Vicki sorry your not well, but it's great that Colin is well enough to look after you for a change. Hopefully you'll both have a long time to recharge your batteries now and get back to some sort of a normal routine.
Hmmm what is a normal routine? I have a routine and I've been on it for over a year now so I guess that's my normal routine now :-/ lol
Oops I'm rambling :-0 I should save that for when I'm at the lakes. 😉

Everyday is a Gift (copyright to Tuesdays support group)
Andy xx

[PerkymiteParticipant]

A trip to Greece wow 😎 can I come in the luggage. I also love the Lakes, did some walking there many years ago ? not a Wainwright mind you!

That all sounds great to me Andy, considering your start point and the journey you have had.

All the very best on your holidays ? enjoy them.

Kindest regards ? vasbyte – David

[VickiParticipant]

Hi Andy

Thanks, what's normal eh? With mm it seems to be different normals depending how things are going at the time ha ha!! Hope you are doing ok, maybe getting your pps down that sct might not be illusive? Can't they give you double prelixafor to get those pesky cells out 🙂

Enjoy your weekend

Vicki and Colin x

[rangecroftParticipant]

I'm now on cycle 23 with no major problems. 15 mg dose. I have cataracts,which could be a side effect or just age(Im 64). 4 years since diagnosis and in good health. Just come back from a two week cruise,fit for gardening and can walk a couple of miles no problem. I also take 20 mg demexathone once a week. Been through SCT,only worked for 9 months,then Velcade and now Revlamid.

[eveParticipant]

Hi Rangecroft

Welcome,I am interested in your reply as my husband is at the stage of remission ending,and going on Revidimide . We will know in the next couple of weeks.
I am not convinced about Revidimide as thalidomide treatment did not work for him, but it is the next line of treatment,so many cycles then used as maintenance until it stops working !!!

You seem to be able to maintain a reasonable healthy life style as well as going on a cruise,we had a few holidays during his 6 months remission,but now a little bit concerned about health cost,would be interested to know how you managed it.
If you prefer to explain separately ,you can go to my profile and reply.!!! Eve

[andygParticipant]

Hi Eve
Just thought I'd do a little update whilst I lounge in the sun by the pool 😛
I'm in cycle 15 of RCD now although it hasn't banished the MM it has controlled it for now. Thalidomide didn't work for me, well nothing worked for me, but Revlamid has dampened it down so there's no reason that it shouldn't have the same effect for Slim. Though as usual with this awful disease everyone's response is different.

Every day is a gift

Andy xx

[rangecroftParticipant]

I think I am just lucky,I was diagnosed early with no bone damage,though my para protein level was 76! Only time I've really felt ill was during Chemotherapy in the early stages to get that down and ready for SCT. I was put on 25mg Revlamid 2 years ago after a 4 month break from treatment. I couldn't cope with that level. It made me so disorientated, but it did bring my para protein down from 34 to 15 and then slowly down to 7 once I went on 15 mg. It has crept back up to 14 the last twelve months but still okay according to my consultant. I eat well,lots of fruit,fish and not to much red meat. No side effects from Revlamid except the usual constipation and that has eased off now I've been on it so long. My energy levels aren't as high as they used to be but I'm getting older too! Chris

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