This topic contains 14 replies, has 10 voices, and was last updated by 
DaiCro 12 years, 4 months ago.
Hi all
I'm at the day unit Friday for my usual blood tests. I'm hoping to see my consultant too ask some questions. With my paraproteins staying stubbornly in the 35 – 40 range. I would like some input from my experienced and not so experienced friends on the questions I should be asking. I know I should of propably asked questions earlier but maybe I wasn't ready for the answers. So this Friday I'm going to bite the bullet.
Many thanks in advance.
The fight goes on.
Andy
Ps – please don't think any suggestion too silly 😉
Hi Andy
Well am sure you know me by now ??? well am happy if my Doc is happy 😀 if he aint got a smile on his face when I go into the room am out till he has Lol, as Long as My Man says its working I dont feel the need to ask anything else 😎
And am "Onwards and Upwards"
Good Luck M8
I don't envy you your position Andy… the obvious question for me is:
[b]'Are you going to allow me the chance of a SCT with my current status if my figures refuse to budge?'[/b]
If so:
[b]'At what point will this decision be made?'[/b]
If not:
[b]'Then what are the alternative treatments or maintenance regimes on offer?'[/b]
It seems obvious that everyone has been working towards getting your PP's down to an acceptable minimum level for the SCT process to start. This has not worked, despite several attempts using various treatments including Velcade. But… your PP's have stabilised, albeit at a level above the usual minimum acceptable levels.
I would be asking if they are willing to go ahead at the stabilised level… and if not then why not… and what would be the [b]actual minimum acceptable level[/b] given my case study.
If they are not willing to allow a go at the SCT then what can they offer? For instance, you are on R&D at the moment and you have stabilised… is this treatment/maintenance a possible long term alternative… with further attempts to lower the PP's when the current treatment relapses?
If they are not willing to risk a SCT at this time then perhaps your current regime might be the alternative… i.e. instead of seeing it as an interim treatment to decrease your PP's.. you could embrace it as a medium/long term treatment.
You have had such a concentrated high level bombardment of treatment without success… but your MM has not increased or spiralled up and out of control… it has stabilised and seems to be saying 'What Next?'.
I hope that you are answered with some positive, achievable propositions. If your PP's don't look like coming down any further at this time then perhaps coming back to it with further attempts using Velcade etc., might be the answer further down the line… if staying whee you are, with what you are on suffices until then.
In your position I would want concrete answers… with probabilities rather than possibilities being the order of the day. I have had a few of these 'crunch' consultations and as scary as they might seem I have always felt better for knowing what comes next… I hope that you hear good, positive news.
Dai.
Hi Andy,
I'm with Dai on this one, it's most important you get all the information you can so you have it clear in your mind and can be part of the decision making process. This is paramount when things aren't quite going to plan.
You want to be leaving the Hospital confident that everything is being done that should be done.
Best wishes….Keith.
Dia has hit the important questions I think. However it depends on how hard you want to bite the bullet.
I insisted, and I mean insisted, on a Prognosis right from the very start. "If all goes well 2 to 3 years" I was told in July 2009. The question I would be asking is what treatments are now available to me and what is the prognosis if they do work and if they do not. It is a scary question and the answer will be filled with lots of "ifs" and "buts".
Having said that I feel as fit as a fiddle and do not feel I am going anywhere at the moment, apart from holidays in the Isle of Scilly (next week) and Minorca (August).
Kindest regards – Vasbyte (big time buddy)
David
Hi Andy,
🙂 🙂
We are with Dai and David. We asked the hard question at the beginning. How long and got told the 5 year average. We were then met by the trial nurse and I cried from one end of the hospital to the other…..that's not me to cry in public. That said we knew that worst, however it's become the challenge to avoid. Our catch phrase failure is not an option!
I would pin them down to ask what the next two options at least are and what are the upcoming trials that you can go on, now or shortly. I'm no expert but I know I'd be asking these questions for Colin……hope that helps
Vicki and Colin x
Dear Andy,
I am sorry that you find yourself in the position to be asking these kind of tough questions. As usual I think Dai and the others have hit the nail on the head. I think I would also want to explore the possibility of any Trials giving you access to other newer drugs.
I would also want to explore not only whether you can have an SCT with your PP at this level but also the type of SCT. It may be possible to consider a mini allo rather than an autologous graft. I dont remember whether you said if you have any siblings.
I dont know that I have ever heard of a suitable PP level for SCT to be considered. It might help you to know that when Steve had his SCT his PP level had risen from 0 in May to 17 in August, and possibly more by the time he went into hospital in Sept, the myeloma was certainly active at the time. Whilst his doctors were 'disappointed' there was never any suggestion that the SCT should not go ahead. He achieved total remission with pp's down to zero again and nothing in the bone marrow. He had 14 months of very good remission.
I am sure there will be some solution for you, stay strong and as the others have said, make sure you take a full part in the decision making.
Good luck for Friday,
Love Mari xx
Well Andy what can I say its almost if I have started a ball rolling,did not mean to just found it strange so many treatment with out real progress or time for progress.
If I was you I would ring up your consultant and ask to see him!!! he should be able to give you time away from the clinic!!!!! don,t go on chance.
Have your list of questions'
1. is why have you been removed from treatments not giving them a chance to work
2 Would you have better treatment on trials.
3 were is the nearest trials to your hospital
4 Would they consider SCT as you stand possible with a back to back SCT>
5 only if you want to know????? how aggressive is my Myeloma.
I think the hardest question is the last one,Slim has never asked and plods on through his treatment,I am not entitled to know his position.
To put it bluntly everyone else knows except the persons it concerns.I do understand. there problem,but I see pity in there faces,and that,s sad.
Roll on BMB and then we will at least know the position.
You need to know the beast you are fighting,to be able to overcome it.Eve
Hi All.
Many thanks for taking time out with all your suggestions.
Dai thank you for your thoughts and advice I found them very helpful and insightful and will base my meeting around your advice. I really like your posts and how much thought you must put into them I find them very informative and helpful.
David I think I have been trying to avoid the "how long" question maybe it's time we found out – that's if they have an idea!
Keith I agree with you I should be playing a more active role in my treatment but not sure if I have enough information or insight – yet!
Vicki and Colin I admire the way you have tackled this horrible disease head on. I hope my strength holds up whilst I ask my questions – hopefully my wife will help 😉
Mari my PP's have never managed to get below 35. I started at 50 and was told a minimum reduction for SCT was 50%. I do have a brother and sister and they have been tested for matches – my brother wasn't a match still awaiting my sisters result. I will have to ask about trials.
Eve yes you have set the ball rolling and I thank you for that. It's about time I knew everything coming my way and how we can fight it. I'm waiting for a call to confirm my meeting with my consultant Friday. She's off till Thursday – doesn't she know there's a war with MM going on? 😀
Tom you always make me smile and give me a lift. I'll make it my aim that at least the Dr and my wife leave the consultation smiling.
Once again thank you all for your input and advice for a shy 😉 and slightly scared Andy on the road to enlightenment.
Any more suggestions would be gratefully received.
The fight goes on
Andy
Dear Andy
I can't add anything to the questions already said, other than look in the Trials Tracker here on the site to see what is available around the country and ask to be sent there if that is possible or feasible. You will have to be quite forceful and firm I suspect if that is a direction you want to take.
Good luck
Love Helen
Hi Andy
Well good luck for Friday,either way I think it will be a great relief.You will know what you are fighting so you should be able to take part,and do some research towards that treatment,you have jumped so far ahead with different treatments in so little time.
All treatments need time to work Velcade they say 6 cycles and like to know what is going on after the 3 cycle as in Slims case.He went from 80% plasma Cells to 6% in BM,that was the important marker,as bloods and kappa light chains,were not showing true.
A very good question to ask,Is what would you do if you were in my position,and look your consultant in the eyes.
Love Eve
Hi Andy and wife (sorry what is her name?),
Thanks for your kind words….don't know how we cope with it really, but we are both stubborn ha ha, and don't like something to beat us!. We have tried to keep a bit of humour as well, though that's not easy. We said we were going to treat it like a project, needless to say I ended up demoted as Colin wanted to be the project director! That said all that resolve goes out the window when we are trooping to the hospital with yet another infection and worried about what will be!:-)
We read, read and more reading on the subject (well I did most of that), because whilst we are not medical it helps that you can ask informed questions at the meetings and feel that you are at least a bit on par with the consultant to truly discuss the options. I like to think that we are dealing with this as a real team, me taking responsibility for medicines, writing the notes up on thoughts, feelings, side effects etc and being there at every consultation etc…. That's hard when I work full time as well. We are lucky that overall Colin is relatively mobile too (touch wood).
Andy, as hard as it is, ask all the questions but on the understanding that whatever is said you can find a positive and a route that will suit you and you wife to battle this thing through. Its flippin hard but keep believing and positive. I am sure there must be an element of mind over matter in there somewhere.
Very best of luck on Friday to you both x
Vicki and Colin
No advice here, Andy, just sending you cyberhugs and my best wishes for your appointment.
[img]http://i280.photobucket.com/albums/kk200/Dremr22/adbdisney-1_hugs444422.gif[/img]
Love
Eliz
XX
X
Hi Andy,
me along with everyone else hopes that everything turns out right for you and you get the answers you deserve.
Like Eve I strongly buy into the Know your enemy stance and have said so on here many times. It's how I've always approached it and always will as long as I live. Burying your head in the sand and living in denial won't do any good whatsoever so you face it head on and dam the consequences. After I was originally diagnosed Nov 07 my initial feeling was one of anger against this malady that was robbing me of my independence and taking control of my life
Then after clearing my head I prepared my line of battle of how to tackle and defeat MM in order to take back control albeit in a new and different kind of future. Gone were the long term plans with everything being brought forward onto a much shorter timescale. Things that seemed important before now seemed insignificant. The simple fact is we have to make the best of what we have and not to waste time complaining about what we can't have.
I'm sure it will work out for you Andy and please let us all know how you get on.
Keith.
Hi Andy,
A belated 'best wishes' for your 'Question Time' today… I am sure you will let us know in due course, I just wanted to let you know that you are in my thoughts.:-)
Dai.
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