[ready2fightParticipant]

My husband is diagnosed a few days before Xmas last year with MM. Reading all the different scenarios about treatments etc, on the website, I feel really if everyone is speaking a language I dont know about! How many different counts are being monitored?? I know about the haemoglobin count and kidney function thats about it.

He was really doing OK with just one blood transfusion and monthly Zometa until 2 weeks ago, he suffered kidney failure and it feels like its all going haywire. He is now on dialysis 3 times a week, we haven't seen his haemothologist yet but they are talking bout crancking the chemo up. It all seems so sudden, I am really scared, I don't want to lose him yet. In my mind I was thinking 5 years and the haemothologist did say in January you can live for a long time with it, no it seems the goal post has been moved and we are not ready for it!

All seems so unreal! Anyone else feels like that?

[eveParticipant]

Hi Deirdre
Welcome to the site,yes the whole thing does seem so unreal,it is all a bit mind blowing,how are you managing in yourself are you getting enough rest??

It must be hard work,going to the hospital 3 times a week,why are they talking of ( crancking up the chemo??? )

How long has he been on treatment and what chemo treatment is he on.??Eve

[ready2fightParticipant]

Hi Eve,
Thank you for replying :-). According to the consultant at the hospital in Swansea, Cyril has had Bence Jones protein in his urine since 2009 (we were only told last Dec 2011) about it, Somewhere we've haven't been told he had MM in 2009 and he has been left for 2 years without monitoring or treatment :-S He only had Zometa every month (since January 2012) and our GP called it chemo according to the haemothologist its not chemo he will be on a chemo soon thats why I said in my post's subject Confused! I really do need answers things are not straight forward as it seems it has been!

Deirdre
xxx

[jmsmythParticipant]

Hi Deirdre

Sorry thatmyou are now part of our club, but welcome from me. My hubby was diagnosed 6 years ago with smouldering MM no treatment only Zometa which he had for a year. June this year he started CDT and has just finished and is waiting for date for SCT and he has started Zometa again. Deirdre if you phone MMUK (no at top) and ask they will send you a Mm diary. I have one for Frank. It is very helpful – area to record bloods, treatment etc. I know Mm is different for everyone but when I go I'm interested in white blod cell count, haemaglobin ,neutrophils platelets and the para protein. But you can keep,a watch yourself on the bloods

My best to you and Cyril. Come on and ask any question they are a font of information!!

Take care
Love Jeanxx

[ready2fightParticipant]

Its really nice to meet you all just wish it wasn't cause of MM! I will ring on Monday for a MM diary. I am just cross that we haven't been informed in 2009 that there was Bence Jones protein in his urine, at least we would ve expected all the last 2 week's drama with his kidneys. He was so poorly he didn't know what was happening to him, he was transfered from one hospital to another to get a catheter put in his neck to start dialysis. That was done with a local anaesthetic but he was so confused that he thought he was in a car crash all he wanted was to see me and reassure him, unfortunatly he had to wait 7 hours and by then he was traumatised. Don't get me wrong we have got a wonderful team of doctors, consultants and nurses but we feel really let down, it also wasn't the same hospital who discovered the BJ protein 3 years ago, we switched hospitals last year due to geographical reasons and the roads were icy the night he has been taken into hospital. Just dread to think if we went back to our original hospital if he would ve been told then?! Now I just want to concentrate on him and his health, I drive all the medical staaf nuts I am over protective and are in for the kill if I find anything not as it should be.

Thank you for your response Jean, the advice means alot to me, it helps just to talk! Hope you and your husband are well.
lots of love
Deirdre

[eveParticipant]

Hi Deirdre

I will not say I know why you are so confused,its either something that has gone drastically wrong or lack of knowledge about mm,and some were along the line you have extra complications.

Even if your husband had smouldering Myeloma,some one should have been keeping watch on his bloods,from your answer" only having Zometa"Well it strengthens the bones and is known to help with chemo drugs,but it is not a chemo.

Haemoglobin count is an important marker
Kappa Light chains are high when Myeloma is present
white blood cells
Platelets
Neutrophils

To me it sounds if he has been admitted with AKF,and has not started on Chemo as you would know more about it,that is were it gets confusing.

They will not look at the Myeloma until they get him stable,usually Dex which is a steroid is the build up to chemo,
If he does not go on a trial,first line chemo is CDT.you will know if he is on this because he has to sign a lot of paper work.
So try not to worry about what has not started yet.
His kidneys are important at this moment.
There are a number of people on here who go into hospital in A&E with AKF or Hyper calcemia,very ill at the time,but respond well to treatment.Kidneys can regenerate time will tell.

It does sound if something has gone wrong from 2009.
The concern now is to get him better,lots of people on here,have had problems with being diagnosed as only 3000 a year in uk,doctor,s might be lucky and see one patient in his life time,and younger patients do not fit the norm,plus kappa lightchains,show in the urine.

Stick to Myeloma Uk site for now,otherwise you will scare yourself to death,forget about how long he will live,I know it is hard,just take it day by day.you are on a big learning curve,it is do able.

Look at old postings on here,you will learn a lot and see there is light at the end of this tunnel,get your husband on here,it will help,good bunch of people,who have lots of highs and lows,plus a great depth of knowledge,they will help you.and you will make friends,if you can get to an info day it will help,or talk to the nurses on here.Eve

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