This topic contains 15 replies, has 13 voices, and was last updated by 
Georgina 13 years, 4 months ago.
Hi Everybody,
It's a bit like the famous Jaws film here "Just when you thought it was safe to go into the water"
We went to see Dr S last night. We had the bottle of champagne in the fridge to come home to as we both knew that Stephen felt fine.
Well doesn't this (worse word you can think of and ends in ing) illness come back to bite us all in the bum.
Organs all functioning fine but pp levels up, up and away. SCT June 2009 and mm now back. I am not quite sure of the drill from here. I was so shocked I started missing out chunks of what Dr S was saying. I do know that I can ring him and he will go through it all step by step.
I remember him saying that the next round of chemo will not be so intense as Stephen's body (or anybody second time around) will not take it as well as the first hit.
Obviously he avoided my question of "how long?" and just said that the median (sp) is 4-6 years. Well with diagnosis in 2008 who knows. I also wonder if the time scale is from diagnosis or when one actually got the B*****d thing and it was not diagnosed.
Yes we did still open the champagne. I sobbed through the first bottle and then Stephen remembered that we had another bottle in our "rack" sounds very posh but it is only a space in the garage where we put wine.
By bottle 2 I was tired, giggly and weepy. We both woke up with a headache and will sign the pledge as soon as we can see properly. We carried on our reverse celebrations by going out to lunch at le Cafè Rouge on Free vouchers that we had collected from Tescos. To partly quote Tom It is not upwards but has to be onwards what else can you do?
Love to all Gill xxx
Dear Gill – your attempts to avoid any naughty word to describe your feelings were magnificent but they were understood all the same. I don't think many of us would have reacted any differently to you. My reaction after my first relapse was precisely the same. Lost the plot and needed another doctor to tell me all over again – I was devastated, more so than on diagnosis.
Your Dr S is right about the second line of treatment although I can only speak with any authority on a second SCT. Here the strength of the melphalan was less than the first time round. I think it was something like 140 strength rather than 220. It is also said that you dont usually get as long a remission with the second as the first but I know someone who got many years more with his second and then went on to have a third. So it is not written in stone.
As for the "how long" question I think they wisely avoid answering because at this stage they really don't know. I too was given 4-6 years but I have passed my sell-by date and have now reached 7 years. Just keep going Gill – once you both pass the total shock stage you will be better able to face ahead and do so with optimism. Right now you need to ask Dr S the questions your mind blanked out so you can be completely informed on what's ahead.
I'm glad the champagne was there to help you (plus a drop more). I am sure many people here understand completely how you are feeling right now. I know I do and remember how difficult it was to take in but you both will bounce back, of that I am sure.
Love, Gaye xx
Dear Gaye
Thank you so much for your reply I needed somebody to make me put my sensible hat back on. It just comes as such a shock when you seem to have got some "normal" life back to be told by mm "fooled you there didn't I?"
One more bottle of champagne left and that is staying in the garage until Christmas day. If we get mum in law to have a glass or two she will doze off with the rest of us.
Love and thanks from Gill xx
Dear Gill what a bugger!! I know how you felt it is like a kick in the teeth !!But somehow you do adjust and there is always another drug or combination of drugs to try As for how long I never ask that one just keep giving me the meds and I will carry on being here.I do hope today has been better and once you talk to the doctor again you can feel better lots of love to you and Stephen Bridget xx
Oh Gill,
I feel for you and Stephen, whilst Peters remission period was shorter than Stephens having had any kind of normal life without meication and tests and more tests it was a wonderful time.
Peter would and did say today, that he feels fine and cant understand why he is or was unaware that the beast is back.
Yesterdays nightmare is over, and today is a new day with new challenges. Peter doesnt have paraprotiens he has light chains and yesterdays news that it had doubled every 2weeks reaching a hiatus of over 7thousand compared to 5600 at dagnsosis made us very frightened imagining that this thing is coming back very agresively.
It was all put into some perspective by meeting a lovely couple at the day clinic yesterday, who had just had great news that his pararoteins had now got to .1.. from a very high figure. Like Peter this man(Mark) had relapsed 5months after his sct and started on velcade, following 4 cycles he had made the decision to stop treatment as he could not cope with the fatigue. He was persuaded to keep going for 2 more cycles and those two showed the greatest response. There joy at the news was palpable and infectious.
So much so that when peter was so upset last night re-calling the events of the day and how bad it all was, I pointed out the joy we felt for them as a good point.
This morning was not good, but the day has got better, and Peter has got over the shock and dissapointment of all the bad news yesterday and is now thankful that the test was done or he may have died on the operating theatre due to the bloodclots in his legs which may not have otherwise come to light.
So every cloud has a silver lining.
Today is bad but tommorow will be better and our mood will be back to fighting.Not that its any consolation but having been there and got the tee shirt you know that you are not alone and you know a little of what to expect rather than constant worry at all the new faces and terms and proceedures that Stephen is about to embark on.
Im with you all the way the expletives really are the only way to deal with this poxy mm.
Love
Min
Gill, can I ask what is the high PP levels
So sorry to hear your news Gill, what a knock back. I have just come in from our local Myeloma support group. We were just talking about the whole relapse thing. There are several relapsed people in the group, still living a pretty normal life and coping with whatever the next stage brings. Hang in there I know Dr S will do his best for and there is a;ways new things coming online
Big Hugs,
Mari xx
I'm so sorry Gill
I know what this feels like. So remember what you all say to me.
Take one day at a time, keep smiling (Thats hard I know) AND NEVER EVER GiVE IN.
I wish you both all the best and hope and pray that things come around for you once more.
Love Roz
Hi Gill,
You and Stephen have been my guides and mentors ever since I discovered this forum (unwittingly if not unwillingly) and I follow Stephen's progress as a possible guide to mine.
I am so sorry that you have had to face up to this at any time but before Christmas is a bit of an extra bummer. As for his pp's its a matter of onwards and downwards; as for the two of you I hope that you can treat this knockback with the contempt it deserves. Stephen is still feeling good, so bring on the treatment and try to keep it that way for as long as humanly possible… bite the bullet and repeat; ad nauseum.
And in the meantime hope like crazy that something else comes along to add to the arsenal of treatments that keeps mm at bay… or better. We know the first happens and with the way that medicine is advancing? Who knows for the second.
My thoughts are with you and if its any comfort I feel angry more than sad.
Dai.
Thank you all so much for your words of encouragement, especially to all the people who have trod this path and have their own battle to fight It means a great deal to have your support. Yes today is better.
I realised a long time ago that if one worries about the time that is left you may as well just throw that time away. I just needed to think of that for a while since Dr S's news.
We both enjoy cooking but for the second day running could not find it in us to bother. We got yesterday's lunch on vouchers apart from the tip so today we splashed out and went to our local eat all you can for 6.99 Chinese restaurant.
They have about 40 different dishes that you serve yourself from and you can eat as much or as little as you want. Neither of us are huge eaters but it is nice to go back for a little more of something that you like. eg chicken satay with a really crunchy peanut sauce, and one of the many deserts on offer is jelly and ice cream (I am retired but a school child at heart)
We may not have pigged out completely but we probably won't eat again until Saturday:-)
Thanks again and love to all Gill xxx
PS the next meal we have will be something very plain and boring. Bangers and mash anyone?
When I went into hospital for my sct a cousin from South Africa sent me an Africans word to use. It is "Vasbyte", it means bite hard. And if you you think about it really fits MM so well.
The very best of luck to the pair of you and [i][b]VASBYTE[/b][/i]
Kindest regards
David
Hi Gill and Stephen
So sorry to hear that the [u]B.A.S.T.A.R.D[/u] MM has come back:-( :::::::::(found a way to cuss, sorry hope it dunt offend:-S)
And am sure the Bottle'S helped that nite.
Stephen and your goodself have been an inspiration to me during my short time with the ([u]above large font[/u]) MM
I was given a lenth of time with the dreaded MM BUT I have read that one was sent home with the words ringing in his or her ears "Sorry there is nothing more we can do for you 9 years ago 😀 hey so that has blown my dr out of the water, so what am trying to say is that yep its back but you and Stephen are the ones to beat it 😎 Even if you have to use the "Rack" more often (and it does sound posh) but promise me, you will never take the "Pledge" as i have just went into my pantry for a Vodka>:-)
Not forgeting we are getting new drugs ready for us all as we speak, keep up the fight we all know its the only way, so i say to you both "Onwards and Upwards"
Love and hugs to you both
Tom xxxx
Hello Gill
so sorry this d.a.m.n thing has reared its ugly head again I have been reading the reports from america and it looks like so many new treatments are being tested so even after a second SCT there will be much hope of new things being used glad about the champagne we must all stay positive or we might go under I have not been able to have an SCT as my kidneys were to badly damaged.
Chin up
Best wishes Jo:-S
Hi Gill
I'm so so sorry to hear it has come back. I know it is a real shock when you relapse. My mum relapsed in August 10 (after her SCT in September 09) and I remember revisiting all those feelings of when she was first diagnosed including fear, anger etc. She has been on velcade since August and has had a good response. She is now only having the velcade once a week and luckily has had very few side effects. So apart from going to the hospital once a week, her life has pretty much returned to normal.
Do you know yet what treatment they are planning?
As other people have said, there are lots of treatments out there and the outlook for myeloma patients is so much better than it was a few years ago. Who knows what developments will happen in the next few years. My little ones are aged 6 months and 2 and a half and I'm planning on my mum being around for many years to come to see them grow up.
Keep positive and take care of yourselves
Lots of love
Georgina
P.S. Those tesco vouchers are great aren't they!
Hi Mari
i think you also live in e sussex can you tell me where the suppourt group is, do you find it helpful? I am really feeling i need someone to chew things over with.
hope is all still going well with your husband
sarah
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