[TibbyParticipant]

Hi Christine, I have just been diagnosed after a blood test and am in a total whirl. Please can any one tell me on the site what their protein levels were on diagnosis as I was told mine should be 38 and it is 101!
I do not know if the protein reading is relevant to any thing and am just about to discuss treatments with my consultant I am confused as to whether to go on the trial being offered me or just the standard treatment. I am 52 years old, feel well apart from some hip pain.
Any advice from any one on the site would be appreciated.

Bev X

[eveParticipant]

Hi Bev

You would be better introducing yourself as people are more likely to see a new posting,just log in go to Newcomers,then scroll down to bottom right hand corner and it says start discussion !:-)

Any way a warm welcome,Slims consultant tells us PP are not important,but he does have a few problems in this area,I am sure someone will come on,who makes note of there PP.

You do not say what trials have been offered and there are lots out there if its MX1 then I will explain below!!!

As for trials there is a lot to be gained,but with NICE accepting Thalidomide then Velcade and Revilidimide as the three treatments,they are the same as trials but in a different order.
On trials you will be randermised for either CDT or CDR.

My advice is ring Ellen or Maggi there is a free number at top of page,they can explain plus send you information,its hard at first all the medical jargon,but you will get use to it.
It is worth writing questions down,like what sought of myeloma do I have!!!
What stage is it at,some will tell you they do not stage it,the information books Ellen sends will help you know ,how much damage you have.

Any way enough for now,take it one day at a time,and do not let anybody rush you in to making. A decision ,its your life you decide,which way you want to go. Looking forward to hearing from you.Eve

[mhnevillParticipant]

Hi Tibby

As you've asked the question, my protein level was 13 on diagnosis and didn't get very high even when I started chemotherapy. However,I did have lots of bone damage and had a tumour on my spinal cord. This is a very individual disease. My Consultant said that the speed of the PP movement is more important than figures on their own. However I read once on here that 50 was an indicator that treatment was necessary.

Had you thought of ringing the MUK helpline. I am sure they would be able to give you some good advice.

Lots of love as you get your head round all this.

Mavis x

[rebeccaRParticipant]

Hi Christine just seen your post and noticed you're not too far away being treated at Pontefract – I live Goole area, am 51 and was diagnosed just before Xmas. Do you live in Pontefract? I go to Xscape quite a bit and thought if you ever wanted to talk – away from loved ones – we could meet up. You sound very positive but I know it is an emotional rollercoaster of highs and lows. If you ever want to meet up drop me a line ( at the clinic I attend everyone seems to be 70yrs+)
Take care
Rebecca
rollinsonrebecca@gmail.com

[tomParticipant]

Hi Rebecca

I live in Scunthorpe where are you having your treatment??
we used to have a post (not sure if its still on this one or the old one about where people lived and were having treatment?

Tom Onwards and Upwards xx

[rebeccaRParticipant]

Hi Tom, I go to Scunthorpe under Dr Jalihal for treatment and then he sees me in Outpatients in Goole. Castle Hill don't want to risk my kidneys so I asked for a referral to Prof Cook, St James, and then if he says yes apparently Castle Hill will do it! – its about same mileage from where I live to both but I think Castle Hill is an easier drive. Very nice at Scunthorpe tho' and really like Dr Jalihal

[Nanna59Participant]

Hi Tom

Sorry for the delay but thankyou very much for your words of encouragement

It's great to know that there is light at the end of the tunnel and I am so pleased that you are in remission nd drug free

I am looking forward to the same

It shouldn't be long now before my next step on the treatment ladder starts

Kind regards
Christine 🙂

[Nanna59Participant]

Hello Tony

Thanks for your reply

It's so interesting to hear the stories people have to tell on here and although I wouldn't wish this on anyone at least I know that the treatment is worth it in the end!

I will keep you posted on how things go 🙂

Kind regards
Christine

[Nanna59Participant]

Hi Mavis

Thankyou for your warm welcome and your good wishes

I am so happy that you are now in remission

Here's hoping I am not far behind you! 🙂

Kind regards
Christine

[Nanna59Participant]

Hi Bev

Thankyou for your reply

I am new to this site and also to the world of MM

What I do know is that my para protein level was 76 in the beginning and my last test showed that it was 2 point 2

I took a list of questions with me when I went to see my consultant the second time as my head was spinning when I had visited him initially and I was sure that I would forget something

People on here have been a great help and I am sure you will receive loads of support

Kind regards
Christine

[Nanna59Participant]

Hi Rebecca

That sounds like a great idea

I will send you an email

Kind regards
Christine

[TibbyParticipant]

Hi Christine at what point did your protein drop please?

Bev X

[trankaParticipant]

hi everyone im new to this my mum is 74 and newly diagnosed im caring for her and its a whirlwind of a time upsetting dont no much tried looking up things but mostly scared and i dont really no much to be honest as the diagnosed by hospital and i wasnt there she wont talk about it i think shes scared to

[tomParticipant]

Hi rebecca

I also am being treated with the great Dr Jalihal and the great Helen 😎
My next visit is December 5th I think.
we ought to have a coffee one day and as they say "Chew the Fat"
I went to one or two MM meetings at Goole.

Hope to meet up with you soon

Tom Onwards and Upwards xxx

[rebeccaRParticipant]

Hi, yes that would be good – didn't even know they had a support group at goole

[Author]

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