[DaiCroParticipant]

Okay, here we go… again.

P No.3 – last chance saloon for my 3rd 24 hour urine test in 6 weeks. The 24 hour collection starts in the morning and ends with the first leak of the day on Wednesday – at which I will take it in to the day-care centre, have my bloods taken and hope for the best at my next consult come next Monday (27th).

I only need 0.5%… one half of one percent Myeloma present in my urine… its been there so often in the past but now its deciding not to show. At any other time I'd be truly happy but no M in my P means no further testing qualifiers for the 'Aspire' trial… which I want badly.

Ho hum.:-/

Dai.

[brochoParticipant]

Hi Dai I will cross fingers and toes that you get that 0.5% you need Good luck love Bridget x

[MinParticipant]

Dear Dai
P3 or Not P3 that is the question!
I know its not easy but you need the P to be super concentrated so try and drink less so what you do produce is more toxic. so to speak. Then after 24 hrs you can go back to your normal x litres a day. forgot already what it should be.
Hope its how you want it when you do manage to produce but it must mean your a briliant weight lifter having to carry that much liquid to the health centre!!!!
I cant understand this at all if there is non in you P surely there is very little in you blood too. Are they sure you have relapsed.
Or are you one of those light chain people who doesnt show up in P?
Whtever I hope it works the way you want it to and I am sure someone will be able to tell you better than me.
luv Min

[eveParticipant]

Hi Dai
Min is right about less liquid needs to be day before 24 hr bottle.!!!!

If I am correct Dai you have Kappa Light Chain like Slim,so bloods do not detect it and urine is the marker,so as Min says how do they know you have it back,have you had a MRI scan or BMB,if its showing in light chain test it has to be going through the kidneys surely.sorry if it sounds stupid:-P

When we went to Kings for talk about SCT,I was surprised that they do not consider BMB as honest marker as cells can bunch together,so if bloods are good and urine not showing correct reading,may be MRI scan as Bridget has is the way forward.When you get conflicting information from experts,it does make you wonder:-/ Love Eve

[MinParticipant]

Sorry for kidnapping your post but how is Slim these days Eve? did you ever get the holiday you both deserved?
I look at this site every day but in such a short time things are moving so fast that I can no longer keep up.
That is progress for mm but widows brain for me.
I notice that you still struggle to keep his weight up. Never mind about the sausages and bacon and eggs if he enjoys them to hell with the healthy diet.
Let him enjoy what does him good and he enjoys,
I have been going thru Peters personal ?stuff? and I kept finding packets of 10 cigerettes along with lighters.
Initialy I thought the sod, how stupid. Now I think. What a shame he enjoyed smoking and drinking and I never saw him do iether after he was diagnosed but so wish he had just enjoyed life even if it included his cigerettes and Bacardi and Coke.
I am now of the opinion that if I like it i will have it and sod the consequences. Hence the reason for not one but two glasses of wine tonight and i never touched it much before he died as I felt sorry for him not having any.
Life is for living Eve and let Slim live to the best of his ability, and if he wants sausages let him have them.
When he has to endure endless chemo and medication which makes him feel like sh*** there has to be some pleasures in life no matter how small!
Love MIn

[ellenModerator]

Hi Dai, Bridget Min and Eve.

Thank you, as always, for your contributions to the discussion forum.

Dai this is a very tricky subject. One thing I?d like to stress, however, is that a high fluid intake is very important to keep the kidneys in the healthiest possible condition. The way the urinary measurement is carried is not influenced in any way by how concentrated the urine is – so please continue to drink the daily recommended amount.

Ellen

[eveParticipant]

Hi Everyone

Thanks for the info Ellen,I know this is a complicated complaint,but hope you understand how lack of knowledge does not help the patient.
Good luck Dai with your bottle,!!!
Hi Min no holiday yet,as have had a number of hospital appointments,hoping to fit a cruise in before May,looking good.
Min believe it or not if Peter is like Slim,he went off wine and G&T over14 months ago and has tried it since but taste wise,hates it!!! more for me
So do not feel guilty about Peter,I think we just do are best at the time.

We wait on Kings in London for 2 days of test as out patient,only 85 miles to London,then we have to sit down and consider all the facts and limitations SCT may bring,I know we tend to hear more SCT that have failed,
but when you hear Jets failed after 2 months!! it does make you wonder about someone who has serious bone damage and added complications,although they tell me,it does not effect the outcome of SCT.!!!!So we wait.

Slims now under Kings and if no complications except for Zometa we will not see consultant for 3 months.So doing my best to put some meat on Slim,Down to 10st so need to build him up.

There has been an article in the Daily mail treatment verses no treatment but having some quality of life,which has provoked some questions for or against.So all these thoughts are going on,.

I am so glad to see you are coping with all these first,its hard but life does go on and I am sure Peter would want you to enjoy your life to the full Love Eve

[DaiCroParticipant]

Thanks Folks…

I took the bottle in and paid for the testing with some bloods.

While I was waiting for my bloods test my consultant came past and collared me. She said that she had had an email from 'Onxy' the manufacturers and leaders of the 'Aspire' trial and they want all screening results in now!

I have been consented but not screened… so my consultant has said that a specialist nurse will be in touch to tell me which/what regarding the screening processes but we will do them all next Monday (the day of my next consult) regardless of whether the urine test results are back from Birmingham or no. The screening 'qualifiers' include BM Biopsy, ECG, full body x-rays and an MRI or Catscan as well as other bloods… so I will get a top-to-toe examination regardless of acceptance onto the trial…

but I am still hopeful that I qualify AND survive the 50/50 coin toss.

Starting with 0.5% in my P3.;-)

Dai.

[brochoParticipant]

Hi Dai blimey you are going to have a full on day Monday ! Still it will be worth it if you get on the trial All fingers toes etc are crossed for you love Bridget x

[mhnevillParticipant]

Hi Dai

Maybe things will work out for you for once. When you have the screenings you might be accepted on the Trial without the "p" results!!!!!

Sending lots of positive vibes for Monday.

Mavis

[tomParticipant]

Good Luck with your P Dai and hope you soon get told you can have what you want and need. Keep up the good work Dai and dont spill ur P

Tom "Onwards and Upwards" x

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