[andygParticipant]

Hi everyone.

Just finished cycle 18 of pomalidomide and dex on the sunny Greek island of Kefalonia. I wonder what my blood tests will show when I get back lol.

I hope everyone is ok.

Every day is a gift.

Andy xxx

[cygnetParticipant]

Hi Andy,

Just wanted to say I find your posts inspirational!! Thank you for being such a positive person & for bolstering so many of us along the way.

I’ve got everything crossed for your blood tests when you get back…

Love & hugs,

C xx

 

 

[CarolsymonsParticipant]

Kefalonia is one of the islands my July cruise visits….hope I feel as well as you seem!

Carol

[andygParticipant]

Hi all. weekly Dex

Me inspirational now there’s a first 😇

Well cycle 18 had a little sting in it’s tail. Had quite bad leg cramps last night for about an hour. Strange place too on my shin. I get cramps quite regularly at the end of cycles have done since I started Revilimid in 2012 and has continued with Pomalidimide. Guess I’m not drinking enough. Though I’ve been knocking the beer back as fast as I can.

Today is my weekly Dex day so I guess I’ll be awake most of the night. Might just stay by the pool at the bar 🍺😋😂

You’ll be popping into Argostoli which is a lovely little place Carol. I’m sure you’ll be well and you will have a great time.

Every day is gift.

Yamas Andy xx

[stanley-1960Participant]

Hi Andy,

Glad your enjoying yourself and still having a few beers. I decided to take a leaf out of your book and resume my love affair with alcohol. Surprisingly the outcome has been very pleasant, so much so i probably overdid it on a visit to Cheltenham races recently. The strange thing about it was i felt as good as ever afterwards with no ill effects at all. I visited my consultant last week confident i’d found the cure but left with the words “stupid boy” ringing in my ears. I’m determined to persevere though lol.

best regards,

Stanley

[andygParticipant]

Hi Stanley,

I too have found my hangovers have diminished somewhat.

I was told at a consult with Prof. Jackson when I went to see him in 2012 when all my treatments till then hadn’t worked and auto and allo sct’s had been ruled out to go out and enjoy life as much as I can. We’ve followed his advice . In our position it’s do it now because you may never get a chance later.

 

I’ve never been told to lay off the alcohol and a question was asked at the info day about alcohol and reply was there’s no evidence of it interfering with treatment. Though there was a word of caution that as it’s a diuretic you need to drink plenty of water asap afterwards.

Cheers Stanley and enjoy your booze. In moderation of course.

Oh you need to be careful with a couple of antibiotics as they don’t mix well with alcohol but that’s spelt out in big letters on the box.

Every day is a gift.

Andy

[Kazzam2Participant]

Hi Andy,

Well jel!1

Enjoy your hols, and have a beer or 2 for me (hic)

Cheers

Karen 🙂

[mhnevillParticipant]

Hi Andy

So glad you are still getting to Greece and enjoying the beer in spite of everything. My advice to everyone on here would be “do it while you can.” I am not up to travelling to Luxembourg to see my daughter and family at the moment, but have pencilled in a visit for September as something to aim for. We can’t give up, can we.

Hope and pray your blood results are Ok on return.

Yes, you are inspirational!

All blessings.

Mavis

[andygParticipant]

Hiya Mavis.

We had a great time in Greece. I had a problem with my back/hip the last couple of days and found it very painful. It was worrying with a the usual fears going through my head. I had my regular blood test and drug pick up appointment when we got back and got my back checked out whilst I was there. Fortunately it turned out to be muscular rather than bone pain – phew.

We’re booked up to go back to Greece in September again all being well. In the meantime we’ve got a trip to Belgium.

I hope you manage to get to Luxembourg. How are you doing?

I know my galavanting will have to end sometime but hopefully not too soon.

I’ve not been called by the day unit re blood test so I’m assuming all is ok.

Pom cycle 19 has begun.

Every day is a gift.

Andy xx

[HelenParticipant]

Hi andy Mavis and all, good to see you at the info day andy, and great to see you are at cycle 19, I’m on 8 now. And no Allo graft in sight for me either, does this just make us very special people??
Re the info day, it was an interesting day again, even though I’ve been to several now I still learn a lot from them.
We are spending a lot of time in the holiday house these days- it has one drawback- no signal or Internet yet, and very dodgey wiring so could be months before it can be done as we need listed building consent first. Despite this it’s great fun and I feel as though I’m on holiday all the time.,! I’ve just had to come home tonight to do the washing!
Love Helen

[mhnevillParticipant]

Hi Andy

Glad to hear you are back on track after the holiday. There is always that elephant in the room isn’t ther which we all try to avoid! I’m amazed how many lots of Pom you have had already. Can it be like a maintenance drug? Just keep knocking the MM back day at a time.

Hi glam Helen

Was wondering how you were getting on with your holiday home. Let’s hope we are going to get the promised turn in the weather so you can really enjoy it. Aren’t you glad you retired!
It’s amazing that both you and Andy are benefitting from a drug that wasn’t on the horizon when we all started this journey. Plenty more in the pipeline so hang on in there.

Love to you both.

Mavis x

[VickiParticipant]

Hi all

Just catching up with some of these posts. Andy how on earth do you manage to do all this travelling and keep up with the meds and not be sleepy? Colin has pretty much do nothing but sleep and sleep since Sunday morning. He’s eating well but little energy for anything else. I know this mm is very individual but I wonder how comparatively Colin sleeps more of less than anyone else?

You seem to do really well with getting about. Whilst Colin’s on treatment we do very little as he is so exhausted, this might be a dumb question but is it because apparently he has high light chains but no pp showing. He had 50% plasma in his marrow before this treatments started?

You seem to be having a great time despite the mm and I take my hat off to you.

Helen, the pomalidomide seems to be working for you. Do you have light chains or pps? Our consultant wasn’t over struck on Pom and also didn’t seem overseen on donor transplants. How can it be different from place to place. I’m a bit worried we are running out of options and Colin won’t even be fit enough to try and enjoy time remaining! This is a very confusing condition, I don’t think I understand it a great deal more other than its individual and no one knows what causes it!
Mavis; hope you are feeling better soon and able to travel to see your daughter. Are you still in remission Mavis? I don’t think you had SCT did you? Hope you are feeling tip top soon x Vickk and Colin x

[andygParticipant]

Hi Helen.

I was great to see you at the info day and have a catch up. I think the info days are brilliant and I think everyone, who’s able, should at least attend one. The information and advice is invaluable in my opinion.

It sounds very peaceful at your holiday home no modern technology to disturb the peace and quiet well until the diy tools start up lol.

Yeah I think we must be special Helen and pretty rare too it seems.

Hi Mavis.

All sorts of thoughts were running through my head when my hip started playing up and none of them were good. I can’t believe I’ve been on Pomalidomide so long it’s passed so quickly. I just hope it’s got plenty of life in still. Need to hang on for the next big thing.

Hi Vicki.

I must be used to taking the medicine and getting on with things now Vicki. After all I’ve been shovelling the tablets down my throat for nearly four years now. I get tired easily and sometimes fall asleep in front of the TV and spend longer in bed than I used to but there again I’m not getting up early for work anymore.

We know this is our time, today, because things aren’t going to get better tomorrow so we’re doing everything we can whilst we can. With a bit of luck money will be the cause of us cutting down on our travels and not bad health.

How are you coping with Colin being tired and everything? Do you have support around you? and how is Colin coping it can’t be nice being too tired all the time to do anything.

Every day is a gift.

Andy xxx

[VickiParticipant]

Hi Andy

I’m ok thanks. I do worry that Colin will get so fed up at being so tired all the time that he will just give up. It’s getting harder and harder to motivate him. In terms of the SCT we are just going with the flow because we’d be grateful at the mine to get the condition under control. My family are brilliant and we have some really good friends who help. What i find difficult is coping with the random hospital appointments and the time keeping and keeping my job going. Most of the time I can get someone to take Colin to hospital but often have to pick him up and the times are never on time!

His immune system is way down today so we are a bit concerned he will be in hospital by the weekend, all in all Andy its a slog but it could be way worse. I’m just happy to have Colin here! As you say trying to enjoy each day as it comes. But for Colin’s sake and mine it would be nice if his energy could boost as he was always a very active man and I know that gets home down. Still won’t be long before we can get back on our bikes…..literally I hope.

You and steph take care and carrying on enjoying yourself. As I’ve said before you keep us inspired!

Vicki and Colin x

[CarolBradley1Participant]

Hi Andy
Glad to hear your doing so well. Pleased to hear that you are coping so well with Pomalidomide – I am now on cycle 24 and just can’t believe where the time has gone. I too get the dreaded cramps – even in my hands if I grip something every now and again and a few other side effects that you know about well enough. My only real downside is from some of the my medical team who have made it pretty obvious that they resent the price tag of the drug. I have had comments such as “well I like what the drug does but not the cost of it” and “Good morning my most expensive patient”. I suppose I am being a bit over sensitive but it doesn’t help when there is so much else going on. There is no one else in my local authority still getting polamidomide – either gone or had to stop due to side effects.
Anyway, hope you enjoy your holidays and keep up the good work with a relaxing drink – that will do you a world of good a laugh and some relaxation is what does us all good – we’re grown ups and allowed! Take care Very Best Wishes Carol xxx

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