[jmsmythParticipant]

Hi All

After 5 years, on Thursday, I finally found out what type of Myeloma Frank has. (to be honest I did not know there were different types, only realised from posts on site). She said it was IGG Kappa. I did a search on internet but could not get a clear explanation. Can anyone help. She said Frank still did not need treatment. Protein had gone up from 28 to 30, Haemaglobin 11.3, Calcium 2.43 (think point in right place) and light chain 96.7. She said he will eventually need treatment but everything else is stable. Will monitor with MRI's but so far (thank God) no signs of bone damage.

Can anyone give me some more information as it is another 2 months before we go back.

Thanks
Love Jean x

[GillParticipant]

Sorry Jean I have no knowledge of this at all. Hopefully somebody will be able to explain. Have you thought of asking the nurses on this site? I know,from what other people have said, that they are very helpful.

I spent a little time in the States and there was a lovely saying our neighbours had (more than one saying but I will save others for another time:))
If they did not understand what I meant they would say "Cripple that, and run it past me one more time"

I am sure that the nurses on here are used to explaining things to people,like us, who have very limited knowledge of medicine in a way that is easier to understand

I do hope you get some explanations of what it all means.

Take care and stay in touch Gillxx

[jmsmythParticipant]

Thanks Gill I never thought of that. Will do it right away

Love Jean xx

[eveParticipant]

Hi Jean
There is a book called Myeloma your essential guide.
It is excellent,you can read it in little bits to take it all in Myeloma UK should be able to send you one,I got mine from the hospital along with other books about cancer.
If you ask for results of test and use the book it helps you understand them,plus it helps to know when bloods are low in things eg potassium,then you can stuff hubby with banana,s and tomato,s LOL:-P
I find it invaluable . Love Eve

[jmsmythParticipant]

Thanks Eve I will look into that.

Love Jean x

ps Eve downloaded the Myeloma your essential guide from the site. A little "light reading " for tonight. Again thanks

Jean

[eveParticipant]

Hi Jean
I use it all the time,If your unsure of anything there is a good library site,on here.
When this first started I was told Slim had MYeloma,and it was not compromising the cord,and that was it.Everything else I had to ask about,but when you are told new things your are in shock.Since then I have used this site and libraries to find out most things.I make sure I get all results mri,cat scan all bloods,kappa light chains,keeping a file helps me to know month by month how Slim is, it is easy to refer to when seeing doctors or professionals,example needing to claim attendance allowance,blue badge.

If you have facts in front of you,it is easier from your point of view to express you selve,I believe end of the day your body your results.

I do think with staff it is an everyday situation,and they do not understand it is a life or death situation to the family.The more you understand it,the easier it is to come to terms with it.Love Eve

[jmsmythParticipant]

That's brilliant Eve. A lot of information and advice – more than I have received in the last 5 years. Much appreciated.

Love Jean x

[tomParticipant]

Hi Jean

Well I dont feel so bad now:-D I was told Jan 2009 that I have MM but (am sure he told me) dont know what type:-S as for my results? well [u][b]I have been of the opinion [/b][/u]that if Dr is smiling when I go into the room Am Happy 😎

But thinking what Eve says, I think I should take more notice of what I have:-/ am sure I at least should know what type I have 😎

Love to you and Frank, and Eve for shoving me, if I dont forget (and I do) I will ask what mine is (be three months now as I have just been (and yes he was smiling) 😀

Love and Hugs

Tom "Onwards and Upwards" xx

[jmsmythParticipant]

Hi Tom

So glad the doctor was smiling. Your attitude is same as Franks. He has great confidence in consultant and if he needs to know anything she will tell him. It is me that has to know the ins and outs of everything, so Eves advice was great – found out more today than in past 5 years.

Take care (and your young bride) and long long may the doctor continue to smile.

Love Jean x

[eveParticipant]

hI EVERYBODY
It must be me,do I detect that men do not just take these poisons tablets,and say well doctors know best!!!!!!!!
If we do not take an active part in this illness why should anybody else bother!!!
I know I live with one!!
Sorry but we have to work together,I would like to see more co-operation between the medical profession and the boffins,they may be all excellent in there field,but as everyone tells us this is such an individual disease,and the patient is being told.
Yes you have Myeloma.FULL STOP.
Why should anyone wait 5 years to find out what will kill them!!!
Is it me,uneducated I might be,but ignorant never,
Jean as a carer you have rights,start learning it might be the only thing that keeps you sane. love Eve

[tomParticipant]

Hi Jean

Yes he was smiling, but I recall I once went into his room after being called by the nurse and he was sat with his head in his hands and "No smile" I just walked out of the room and the Nurse said whats the matter Tom are you Ok? I said I aint going in there he aint smiling:-0 and with that I added Ok al give him another go, when I went in he was sat Looking at the door and I told him am sorry Dr but I need to see you smile when i come in 😀 and he always is and I hope always will 😎

Hi Eve

Yep your correct I should know what and why, and with your post it made me think a smile is not just for Tom its for everybody and MM is not the same for us all :-/ so this Onwards and Upwards guy is gonna ask 😀

Love
Tom "Onwards and Upwards" xx

[brochoParticipant]

Hi Tom you are priceless!! I would love to have seen the look on your doctors face when you walked out!! Still professionals need reminding sometimes like the rest of us , a smile as a greeting can make all the difference Onwards Uwards and Sideways too if you can manage it!! love Bridget x

[tomParticipant]

Bridget Priceless is Ok for me he he, but the Dr and I have a great relationship so far I can get to see him faster than I can my own GP :-S
He came back to the hospital to take my femoral line out so I could go home, phoned me up at 7.30 at nite as i had a problem, told me to go to the hospital and he would get the Nurse to take some bloods,if I need to see my GP I have to ring at 8 am and the receptionist then tells me the GP will phone me back at dinner time :-/

So Bring on My smily Consultant 😎

Tom xx

[eveParticipant]

Hi Tom
Must admit you do seem well looked after:-)I think Slims consultant takes one look at me,and thinks she,s going to start asking questions:-P
Went to hospital today,bloods and treatment ,arrived 9 oclock bloods,1 0clock for treatment Slim had treatment at 3.30,left 4 oclock.in all treatment is 30 min top.with travelling 9 hours total.:-|
Slim will not see his consultant until October,his words i am sure the nursing team will tell me if there are any problems>:-(
Slim is well in himself at the moment,so hours of sitting on chairs,he can cope with,managed to get 9 appointments down to 6 appointments in one week:-/
How you keep managing to keep smiling through all these treatments amaze me:-) Love Eve

[tomParticipant]

Hi Eve

And that I am 😀 not only at the hospital but at home in the club I drink in at work 😎 but to be honest I had all the later well looked after before I became an MM statistic :-P.

You and Slim seem to have had busy days 🙁 and he is correct they will phone him if bloods are dodgy 😉

As for the Smile its just looks like am smiling as I have Big Teeth, No but I arn't on any treatment at the moment so that helps and to be Honest Elaine and I have been through the Mill since Jan 2008 when we were told Elaine had breast cancer 🙁 then me with MM in Jan 2009 nearly a year to the day :-0 but it didn't beat Elaine and it wont beat me 😎 and thats what makes us be "Onwards and Upwards" folk's Elaine and I with our three Sons can use that word "Cancer" as it does not scare us anymore 😛 .

Elaine and I are here for the "Long Haul" 😎 so hope you all can put up with iccle ole Me 🙂

Love and Hugs

Tom "Onwards and Upwards" xxxxx

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