[jmsmythParticipant]

Hi

After consultation with registrar yesterday and conflicting responses to Franks protein dropping by itself (registrar saying it was good and consultant saying it was bad)I took the advice of Helen and phoned our Myeloma nurse. The long and short of it is that after 6 years, although very rare the myeloma has changed from secretory to non-secretory. She said that the rising in protein was the indicators that dictated treatment. As cells were no longer producing protein a careful eye had to be kept on him.

Has this happened to anyone else? Any info on this will be greatly appreciated.

Love Jean x

[eveParticipant]

Hi Jean

Well you know about Slims bloods plus kappa light chains!!!,the bloods only give an indication of the cells,If you ask for a copy of the bloods every time you go,its states the results if they are out of the band they should be in it will show you.This way you can keep your own watch on them.

Eg haemoglobin 9.2 g/dl (13 to 18 ) this shows that Slims is low than normal but is still within range of not needing bloods,if it went down to 8.6 then he would need bloods.They would expect his bloods to be lower because of treatment,so there is no worry,but needs to be kept an eye on.

Hope this is understandable!!!!

Through this treatment they are going to be differences,if you learn about them it helps,for example low potassium,they do not like,so instead of taking another tablet,you can feed him,bananas tomatoes apricots and if he can drink it guiness,It all helps.

Bowels will be the next big movement.LOL. Love Eve

[jmsmythParticipant]

Hi Eve

Thanks for that. A couple of months ago I asked for a print out and was told they were not allowed to print the results – saving paper!!! So i just make a note of them in Myeloma diary. They said bloods were ok haemaglobin 13.5. Said light chains had changed a bit. Now that I know a bit more I will be more demanding. I remember one of your post from some time ago about this disease making you something like more demanding in getting answers. I now know where you are coming from! My best wishes for you and Slim

Love Jean

[eveParticipant]

Hi jean
Just a quick reply.
There should be a notice some were that tells you ,you have every right to see results of test,and bloods are test.Next time get 20 pence out of your purse and give it to them and shame them,how dare they not give you a print out!!!!!!
At the moment I know the results by phone but every week or so I ask for a print out,Eve

[jmsmythParticipant]

Ha ha. Thanks Eve. My son said he would give me a ream of paper and I can bring it into them. Should put me in credit for some time 😛 will ask for them next time

Jean x

[ElizellenParticipant]

Shame on them!!

Maybe ask for them to email you the results? They are on their computer system so it would take only a few clicks!!

Eliz
XX
X

[BADGERParticipant]

Hello Jean
I didnt know what the difference was so i looked it up only !/2% of people get this and it sounds very strange that it has changed from one to the other perhaps he had this all the time
Love Jo x

[jmsmythParticipant]

Hi Jo

They said that the cells had been producing Pp for 6 years and then for the past 4 months the PP's were dropping and are now at 8. Consultant went on about rogue cells and made a comment about non-secretory but I got the info from the Myeloma nurse. Am doing research on it.

Will be thinking of you on Monday, good luck
Love Jean x

[Author]

Posts