[eveParticipant]

Hi Andy and you to Vicky

Vicky we are all a bit paranoid ,that's why everyone says its like a roller coarser lots of highs and lows,you are both expecting to much,if you look at SCT as major surgery,then you would not expect to be fit. Andy Tom everyone else will say listen to your body.

Andy I am so pleased for you,it is an awful feeling when you do not see any improvement ,and you are taking pills or having chemo,it is so nice to see an improvement . I know you said you need a donna but what is going to happen now,I suppose its a wait and see game with more of the same medication .??
Do you think it might have anything to do with your visits to the pub!! May be PP do not like yeast,it works for Tom….lol
It's so nice to hear good news. Love Eve

[tomParticipant]

Hey Vicki

Well am sure no one knows what is normal Vicki I as sure don't as you know I read many, many a post on here and we don't have so many the same we are all different in our well being and our strengths and weakness.
As you say Colin had sct 3 November coming out of hospital 25 November?
Colin has had "Major Surgery" I know it doesn't look like it as we cant see a great big Gash running down his body nor see 100's of stitch marks criss crossing his torso, but I have been told its Big Major OP that Bad that two of my Consultants told me Not to return to work as well as two of my Cancer Nurses one of which her Husband used to work along side of me and she know how tired he was after a shift.
I had my SCT on the 3rd December and came out of hospital on the 16th December 2009 I never went back to work till May 2010 and that was only light duties it was like sitting at home all day and dint have to take a dog for a walk.
The above post Vicki will not stop you worrying, but I hope it puts you more at ease, Colin has had his treatment but that hasn't made him better (time will do that) rest when the body tells you all you need to do is put a little blanket over him if he nods off in chair, I still do and am four years down the line since my SCT.

Love to you Both

Tom Onwards and Upwards xxx

Andy you know am chuffed for you Both and Eve you know Andy intake is higher than Mine Lol xxx

Onwards and Upwards xx

[AliParticipant]

Hi Helen,

Just to let you know that I too have fingers crossed for good results, and you dont have to start any treatment for many a year:-)

Hi Vicky,

Yes, Mum still sometimes has a nod. She does try to resist though. I think sometimes she doesnt intend to nod, it just happens. (Funny, same happens to my hubby – though he has not got the same excuse;-) ) Its been 8 months since Mums SCT and she says this is the best she has felt in a long long time. As I said she still has days where she cant be bothered to do much, so she doesnt do much. Then other days she is raring to go.

Im sure Colin just needs to slow down a little and listen to his body.

How are you now after you labrythitis – has it gone?

Love Ali x

[VickiParticipant]

Hi all

And firstly sorry to hog this post as this is where Andy's great news is absolute paramount….so to finish off I can't thank you all enough for putting some words down to reassure, it made a hell of a difference 🙂 Tom you are always supportive, eve you are frank and wise, Helen as a nurse and fellow sufferer I trust your views, and Ali you've been supportive throughout and so pleased to hear your mum is doing so well :-). Helen I hope and pray for you that the bmb reveals less than 5 percent and maybe just a blip? By this lunchtime I was too worried and took Colin to the hospital, all his bloods are fine….I and pleased about that and trying not to start worrying out non secretory! What you have all said makes sense and thank you from the bottom of my heart 🙂

Now back to Andy's great news, it must be the beer and sun in Greece, wouldn't it be great if an sct was on the cards, for a man who has battled like hell 🙂

Vicki

[HelenParticipant]

Perhaps all we need to get better is more sunshine and beer! Love Helen

[andygParticipant]

Hi all.
First of all can I thank you everyone for their support and good wishes. It's new terrority for me to have some good news 😀 not sure how to handle it lol. Though weirdly it has put more pressure on the next blood tests. Usually I can forget about them till nearer the time but this time I'm more conscious of them and hoping the last result wasn't a blip 😐 I'm very aware one swallow doesn't make a summer.
I think us MM'ers are a cautious lot. Don't get me wrong I'm very very happy at the moment and I am feeling the best I have done since diagnosis. We had a few drinks to celebrate over the weekend and I will have a few more when the effects of the latest dose of cyclophosphamide has worn off. Cheers 😉
On a more serious note I'm not sure what it means to my chances of a SCT my consultant hadn't totally ruled it out. Though as I understand it I am still unlikely to get to one. The reason given the last time we discussed it was that my bone marrow is too battered from all the drugs I've taken. The last Bmb showed I didn't have a lot of bone marrow at all. So to get to SCT I need to get my PP's right down and for them to stay very low without drugs for a longish period to give my bone marrow a chance to recover. Still you never know – I never thought I'd get my PP's this low. I'll have to wait till my next consult May 3rd to see what my consultant thinks and what plans she has for me.
So for now I'll keep taking the drugs, have a few drinks and look forward to our week in Greece next month all with my fingers crossed and my feet planted firmly on the ground.
Once again thanks everyone for your support and encouragement it means a lot.
As Tom says "onwards and upwards" or is that "I'll have another vodka"?

Good luck everyone.

Every day is a gift

Andy & Steph xx

[tomParticipant]

Andy
Am sure you are going to get used to this "Good News" not be long before you know its gonna be good in yourself.

Every Day is Certainly "A Gift"

Stay well Andy and you and Steph have a Great time in Greece.

Tom Onwards and Upwards x

[VickiParticipant]

Andy

Thanks for your kind words, and I think I sing off the same hymn sheet as steph, anything out of the ordinary and it's 20 questions!!! You are doing a great job….maybe as Helen has said you just need beer and sunshine to sort this mm! Have a great time in Greece, relax and who knows pps down again…..maybe mm is giving up the battle because you've fought so hard 🙂

Enjoy your beers once the cyclophos wears off !

Vicki and colin xx

[BADGERParticipant]

good news Andy and steph

lets hope this is the start for you so you achieve an SCT GOOD LUCK
fOM jO X

[HelenRParticipant]

Hi Andy,

It's great to read this news! I always notice that you worry about giving 'bad news' for newbies etc but looking in from the outside I always think your story is really encouraging, a story of hope. If at first you don't succeed, try, try and try again! I've hesitated to say that before because I'm not in the same boat and I realise it might not feel like that for you – but there will be people reading your case who are going along the same rocky road. It's not like everyone has the 'standard' pattern of response. It seems to me as if 'myeloma' is actually lots of separate types (not yet fully understood). Sometimes the first drug they try is a bit like using the wrong screwdriver and just doesn't really work efficiently despite all the horrible experiences you go through on it. But nowadays they have a few tools in the box and sometimes a different one clicks. I'm sorry you have had such a long and frustrating time getting there, and realise you must feel battered – but it looks like those drugs are steadily plugging away and will keep doing so while you enjoy a nice holiday! Even if they go up a bit at some point, the trend can be down and right down.

Thanks for writing – and I really like the motto. Every Day is A Gift!

Helen (lucky enough to get the right screwdriver first time… although I do know what you mean about being cautious even with good news) Oh and I haven't had an SCT either even as a young'un of 33 – due to the trial I'm on. It's worth bearing in mind that it's not necessarily all about SCT nowadays – so if you get your numbers down with RCD you might not need/want one, or you might be able to do it at a later date. Though obviously your consultant will know much more about your situation and what's best.

[SueMParticipant]

Dear Andy

What wonderful ,superb long awaited news ,hurreh.
If it keeps working you may be able to stay on rev a few years = as good if not better than transplant and without the tranplant nasties

wishing you all the luck and wishes of next time good results too 🙂

best wishes
Sue

[mhnevillParticipant]

Dear Andy,

Like everyone else I am so pleased to hear your news. Keep getting those PPs down. Like Helen, although not a young one like her, I agree it's not all about SCTs these days.

Very best wishes to you and Steph have a great holiday.

Mavis

[adamsp41Participant]

Hi Andy and Steph…great news…as I have said before…"kick them pp's between the legs"…keep the ball rolling and enjoy your "jollies"…stay safe…Phil

[Author]

Posts