[DaiCroParticipant]

Velcade Cycles 7 & 8… will not be needed. As from 10.30 this morning I was shown the door and told not to come back for at least 6 weeks!

We went in to pre-treatment clinic as usual and were sent straight round to the consultants area… my consultant came out after a couple of minutes, picked up my file and bid us follow. She informed me that after studying my file I had been clear (CR 0) for the best part of 2.5 months and that the general rule was to follow on with 2 more cycles after CR 0 was achieved. Given my neuropathy problems and the fact that I had been CR since mid-July… the last 2 cycles would have little impact – so she more or less told me not to darken her door for 6 weeks.

6 Months remission will qualify as a success, a year would be better – and then onto Revlimid, about which she was very positive.

So, we have been thrust into the reality of 'normality'… totally unexpected… but gratefully received. 🙂

Dai.

[zasrsParticipant]

Hi Dai
What lovley news!! Enjoy do what you want to do, just do!!
with love to you both sarah xx

[brochoParticipant]

WOOHOO BRILLIANT NEWS!! Dai its wonderful to hear you have been given freedom from the beast I really hope its for a very long time. Now you can both have fun and live life to the max again Thank goodness you made the journey from Wales and away from that awful doctor , when you did. I was so upset when I read your first post on here, its a shame that ignoramus cant read yor post and understand how poor a medic he is ! Heres to fun and relaxation and more books and songs to be written lots of love to you and Janet Bridget xx

[NettieParticipant]

That is excellent news Dai 🙂
Now ENJOY your success!!!
Love Nettie x

[eveParticipant]

Ho Dai I am so pleased for you,I hope tonight you are sitting there with a big grin on your face,must feel like winning the lottery.
Only this is far more important,and more worth while.
May you enjoy the freedom this gives you.Love Eve

[MinParticipant]

Absolutly Brilliant new Dai… get on and enjoy your life.
Min

[HelenParticipant]

Dai, Just what you needed to hear, here's to long remissions
Helen

[DaiCroParticipant]

Thank you friends.

My remission period has come at me six weeks early, I had no reason to suspect that I wouldn't complete all 8 cycles… but it seems that 6 will suffice.

I am happy but also a little scared… I feel a heavy responsibility to achieve so much in an unknown amount of time. I only produced the bare minimum of stem cells, so no 2nd SCT for me… so I am aware that this period… be it 6 months or more (I believe that my consultant was more or less indicating that anything above 6 months would be a bonus and that a year would be a wonderful achievement) will possibly be the last ever period of treatment/drug free living that I will ever know… so the pressure is on to both enjoy life and achieve certain goals.

Don't get me wrong, its a truly wonderful 'problem' to be faced with and I wouldn't swap it for the world… but I would be lying if I said that it is not also daunting in its way.

A new world starts tomorrow morning… and I want Janet to see it, feel it and be part of it… she deserves it as much, if not more, than me.

Thanks again.

Dai.

[DebsParticipant]

Well done Dai….I am so pleased for you.
And as daunting as it is, go out there and live life to the full. Hopefully with your positivity, you'll get a year or more of remission and I wish you all the best with that. Drug free time is a blessing once you have started isn't it….
Take care
Debs x

[DaiCroParticipant]

Thanks Debs,

I am allowing myself a couple of days to adjust and then we are going to make some flexible plans. I need to be able to write each day – for a set period… a couple of hours or so. I have found that treatment and side-effects has severely restricted my creative pursuits because while you can get your body to persevere you really do have to be in the right frame of mind for writing and songwriting. No excuses now and Janet has made that clear. :-0

Dai.

[PerkymiteParticipant]

Dai I am so so please for you. Have a LONNNNNNNNNNNNNNNNNNNNG remision but most of all enjoy your pill free time.

Kindest regards – Vasabyte

David

[GillParticipant]

I am So Pleased to hear your news Dai. Long may it continue. Yes do make some plans that's what people do when the sword of Damacles (sp) has moved away for a while.

much love Gill xxx

PS you owe it to all of us on here to go and have some fun 🙂 xxx

PPS I think the Ether Elves are still about I have lost this thread (or the plot) twice now

[DizzylizParticipant]

That's great news Dai, long may your remission continue! It's a lovely word REMISSION !! Enjoy Dai and Janet

Love liz & kev xx 🙂 🙂

[DaiCroParticipant]

Thank you David, Gill and Liz,

If positive thinking has anything to do with it I will live forever. 🙂

I really am going to try and enjoy every day of my remission… however long or short it may be. I have a book to write, a series of albums to record and some serious down-time to enjoy with Janet. As I have said else-thread, this period of time will be the last treatment/drug-free time of my life…. and I am determined to to let it slip by in fear of relapse… this is our time, mine and Janet's – and I am going to be self-centered and even selfish in how I spend this time. 😎

That does not mean I will be abandoning my cyber friends… you are all too precious for me to do that. If I do not post as often as I have been it will only be because I am out and about or away. 🙂

If I cannot cope with the 'bad' news that affects my friends because I am temporarily out of the loop and feeling relatively well then… in my books… I would be a poor friend indeed.

Dai.

[SharonGParticipant]

Good for you Dai!!! I am glad for you that you don't have to have anymore velcade and that you have had a CR 😀

I hopefully finish my velcade cycle 8 tomorrow and I will be glad as I have had enough! I am soooooo tired! I hope my scan shows I have had a CR too, have got to wait until mid November for it though.

Wishing you a long remission
Love Sharon x

[Author]

Posts