[teds31Participant]

Hi I think you are right it was getting a bit long so lets start again. hope you are all OK and keeping your sense of humour. Will be interesting going to the clinic this time as I have got so much help here since my last visit, I can ask more questions. Has any one got ideas what I/they would ask. Ted.

[tomParticipant]

Ye Ted I would ask Why I should stop the Longest thread On Myeloma Uk, am sure we should keep that one going strong?
Well am off to add to it now Lol

Tom "Onwards and Upwards" and wanting to keep the longest thread going 😀

[teds31Participant]

what does others think we can always go back, we could get in the Giuness book of records. Ted

[mhnevillParticipant]

Hi Ted

Just to show that I have appreciated the fact that I don't need to scroll down such a long list! Maybe others know how to do it quicker. It seems to take me ages.

About questions – I am only just a year into this business and wanting to delay chemo, apart from zometa, for as long as possible, Because of all the anxiety I feel each time i go to the Consultant I asked last time how high my paraprotein would need to go before she recommends treatment. Her answer, as I posted elsewhere, was it wasn't just about numbers, but how quickly they were moving. Have you ever had that kind of conversation?

One other thing. I have been reading in the latest Myeloma Matter about the results for Myeloma IX Study suggesting that lower dosage CTD is just as effective. When I do need to have tratment, I do hope I get at least five years like you, that I will ask about this.

Again, all best wishes for next week. Look forward to hearing how it goeas.

Mavis

[teds31Participant]

Hi Mavis,I'm pleased some one likes the new thread, about the PP results, yes I have had a strange reply to that question (strange to me) when I asked about what level would I be at before I had to have treatment he said it did'nt work like that and he put it like this "its like a bucket with a hole in it and you are trying to fill it if the hole is bigger than the amount of water you put in then the level will not go up but if the hole is smaller or you fill it faster the level will go up" I think he ment if you got rid of the bad cells faster than you made them then the levels go down and if if the bad cells grew faster then the levels go up. I realise this may not make a lot of sense.Another Doc told me that the levels were not all that important and they would look for other things as well like bone damage etc.sorry if I dont make a lot of sense but lets face it looks like this illness will never make sense. As for CTD not having had any treatment I dont know much about it but I'm sure some one will join in.I hope you get more than 5yrs, I'm sure you deserve it.Take care,Ted

[jmsmythParticipant]

Hi Ted

Frank is like you. He was diagnosd in Sept 2006. Only teatment was about 6 weeks on Zometa. We were at consultant today and I have to say it was the quickest appointment ever. We got there at 8.30am. bloods taken about 9.00am. Called into the consultant, she asked Frank how he was, he said "fine". She said his protein had come down from 30 to 28 (don't know how they work it, as I read on forum some protein at 3) Said haeamaglobin up from 10.5 to 12, light chains good, calcium good and kidney function excellent. "See you in 2 mmonths time". At the very most we were in there for 3 minutes which suited Frank down to the ground. I am a nervous wreck by the time we see her, but thank God he is still stable.

I wish you well for your appointment and lets know how you get on.
Best wishes and luck
Love Jean xx

[PerkymiteParticipant]

Hi Ted, I am with you on this one, when a thread gets tooooo looooong it becomes a real pain scrolling down to find replies you might have missed 🙁 .

I think PP level is one area all the Consultants seem to agree on. The stock answer seems to be "they look at the decease?s progression and PP level is just one indicator". I used to always ask what my blood levels were but after after my SCT (Nov/Dec 09) I gave up. As a matter of interest my Blood measurements when this is all started for me on the 8/09/09 were:

HB = 9.9 (normal male, 13.5?17.5 female, 12.0-16.0)
WBC = 8.7 (normal male/female, 4?11)
Neutrophils = 5.82 (normal male/female, 2.0?7.5)
Platelets = 457 (normal male/female, 150?400)
Paraprotien = 33 (no normal level but I was informed that everybody has a base level of 1 or lower but that it becomes really difficult to measure at this level)

My last Blood levels on 30/09/11 (two years later) are :

HB = 13.1
WBC = 6.57
Neuts = 3.63
Plats = 263
PP = 2.1

I am fit and well at the moment with no bugs or pain. I keep fit by walking 3.5 miles every day the weather will let me and I exercise my brain by playing Age of Empires Online (I am level 36 out of 40 at the moment) to keep me mentally fit, for a 69 year old I feel good.

Kindest regards ? Vasbyte

David

[tomParticipant]

Well it is faster on this one he he.8-)

[teds31Participant]

Hi All, Thanks for the replies and the good wishes we allseem to get this nervous feeling before an appointment, to be expected I suppose,I still dont get the PP side of it Jean, as you say some have the 2 or 3 and others have a hight 33 as David said, mine was about 11-13 and he seemed happy with that, as I tried before to explain the Doc said it didnt matter how full the bucket was so long as it didnt get any fuller,well I think thats what he said. :-/ .I like exercising my brain David but not the 3.5 miles 🙁 we do walk a bit now and then,,we live at the top of a hill its called Garforth Cliff so you get the idea and we have to walk up it every time we go walking,pity its not down hill at the end.Will let you know how it goes Wednesday and I hope its in and out like Frank. Ted

[teds31Participant]

Hi All ,been and done it today,(Wed) pleased to say all good news ,saw ayoung man about 14 I think 🙂 but he was a nice lad, my HB 13 and my PP 12, we talked about PP and why it varied in people and he said I had Asyptomatic Myeloma, which meant that I had Myeloma but no symptons and until I do show symptons they will do nothing,he also said if I had aPP of 100 it wouldnt matter providing I didnt show any other signs of illness.He also said he knew of some one who had myeloma for 20 years and no symptons,so I said thats great I will be 100 by then.So another let off till Febuary. Bye Ted.

[jmsmythParticipant]

Hi Ted

Great news. So glad to hear it. Frank is same. Consultant says everything is stable and does not need treatment. I am just so thankful. The A & E of the hospital has closed so if any Myeloma patient feeks ill they have to go to another hospital. Consultant hoping mad as she says patient in one place and notes and staff to deal with their illnes in another. And like Chinese whispers – communication gets distorted

Anyway Ted brilliant for you – thats what i love to read Keep up the good work and stay well.

Love Jean xx

[brochoParticipant]

Hi Ted its good to hear you can relax for another few months without worrying about your results ! I hope that it stays the same for a very long time It used to be said that you knew you were getting old when policemen looked young but I find its doctors , nurses , teachers ( the list is endless!) so I guess I must be ancient Teehee love Bridget

[tomParticipant]

Hey Ted

Am sure like me you knew that was gonna be the outcome 😀 but a well done from me, roll on old age hehe and he aint realy 14 ha ha 😎
Keep up the good work Ted

From another "Onwards and Upwards" Guy 😎

[BADGERParticipant]

Great news Ted

It will be nice for you to get a few months break from appointments as for the docter looking 14 mine looks like father christmas without the beard a rolly poly he has a cuddly manner as well with me we must stike the right chemistry with each other keep in touch

Love Jo xx:-)

[mhnevillParticipant]

Hi Ted

Great news and it must be a great relief to get another reprieve!!! Long may it last. It also serves to encourage me.

Very best wishes.

Mavis

[Author]

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