[WhamsterParticipant]

Thank you all very much for your welcoming messages it makes me feel that we are not as isolated as we feel, my partner Janine is going to be using my profile as well to try and help make head or tail of what we have just been told.
It is very early in the process for us having been told at about 11.30 last Friday and released from the hospital renal ward about 2 hours later armed with boxes of dex and some information sheets! So please bear with us if we seem very ignorant about the treatments and outcomes.
I have my assessment with the cancer and renal team on Friday 2nd August from which I hope to gain a lot more insight into what it is I am trying to bring under control.
I am going to see my Mum and Dad today in County Durham, it's also the last day of dex 40 mg a day seems like a hell of a lot and 20 tablets after breakfast is a challenge but I am following the instructions to the letter!
Thanks again for your time and patience in giving me your experiences with this horrible disease.
Peter & Janine.

[dickbParticipant]

Just a thought, I was advised to take the dexy in the morning to try and reduce the sleep disruption. Have you been told the same?

[WhamsterParticipant]

Yes I was told to take the Dex first thing in morning, still had a bit of sleep disruption, stayed in bed all night last night, but kept waking up to check the drips in both arms every hour on the hour, the only problem is I haven't got any drips in my arms cause I am at home in my own bed!!! What's that all about?
Taken my last 20 Dex this morning so whatever it's gonna do I hope it's doing it well..
Cheers,
Peter.

[VickiParticipant]

Peter,

Good luck to you. It's important that your partner talks as well. My partner Colin who has mm (in remission 🙂 :-)), hears about all the posts and what I put on, but I'm the one doing the posting. Being the supporter is a tough job too….it can be lonely, frustrating and scary as you want to make it all ok…..

Good luck to you both x

Vicki and Colin x

[WhamsterParticipant]

Hi all, I am Janine (Neeny), Peter's wife (partner, best friend).

This is one of the hardest things ever! It's good to have a forum like this where everyone is going through the same thing. It's been nearly 4 days since we got the definitive results and I think I am still in shock. We do have a lot of support from family and friends though and meeting all the friends on here is helping so much.

Thank you everyone

Neeny

[sanParticipant]

Hello Janine and Peter, so glad that you are on here you will learn so much about myeloma but more importantly will feel supported and not alone with this illness, i have a Mum with myeloma and yes its the hardest thing seeing someone you love going through it all. Take care and love to you both San x

[teds31Participant]

Hi Janine and Peter, Good to see you are both posting. I'm Ted and I am also at Leeds ,just got my appointment this morning for Sept. They are all very good at the Oncology Unit and you will have no problem with the staff they are always willing to answer all your questions,its my idea that its better to have a talk with each other and settle on the questions you want to ask, don't worry about how blunt the questions are if you ask they will tell you the truth. I am lucky in that I have smouldering MM and I don't have any treatment ,which goes to show how different this disease can be.Good luck for Friday and let us know how you go. Ted

[WhamsterParticipant]

Hi Ted,Thanks for your insight, as I am really not sure of what to expect from my first appointment on Friday, in fact I'm not sure of what to expect full stop.
I have just finished 4 days of 20 tablets of Dex on a morning and I'm not feeling great, it may be the lack of sleep so I am hoping I will do better tonight.
It just seems all up in the air not knowing what to expect so I am just going to try and go with the flow and keep being positive and I am a very positive person normally. The support I am getting from Janine is terrific and the poor girl is as much in the dark as I am, together though we make quite a team and I am so glad to have her love and support.
Cheers,
Peter.

[andygParticipant]

Hi Peter and Neeny
Peter you will sleep better from now till your next cycle of Dex. Though you both need to be aware that Dex can mask problems like infections and sickness so it's important to be extra vigilant whilst on them.
Another problem with Dex is coming of it. Peter you may experience a massive downer and be very moody, or maybe not such a massive downer or not be very moody, but it will affect you you will be out of character for a few days arguing where you wouldn't of argued before etc and what's worse you will come to realise its the coming off the Dex that's doing it but you still can't stop it! I manage to apologise now and blame the drugs lol.

Wishing you both all the luck in the world with your MM journey. Enjoy everything you have as much and as often as you can because it can be a difficult journey.

Every day is a gift.
Use it gratefully

Andy & Steph xx

[WhamsterParticipant]

Thanks Andy, actually felt a bit out of sorts last night but I had about 6 hours sleep and feel so much better today, even a little bit more energy I think. I am having to keep an eye on my water intake the same as the rest of us as my kidneys were only working at 10% when I was admitted to hospital.
I will apologise to my darling wife Janine at once and then if we start arguing I can just put my sad face on and she will forgive me!! ( luckiest man in the world me)
Thanks,
Peter.

[WhamsterParticipant]

I have maybe a very silly question, I am keeping my fluids up because I have kidney problems, but does anyone know if normal pop is ok to drink, not sure if it has anything in that they would struggle with. Water is so bland even when mixed with concentrate sometimes.
Cheers, Peter.

[tonyfParticipant]

I was told drink anything but easy on the coca cola!
Try blue top milk, good for the bones as well as kidneys.
I add lemon barley water to mine.
How you doing with the dex, it used to wake me up at 3 in the morning, I would go down for several cups tea.
Regards
Tony F

[WhamsterParticipant]

Hi Tony, just finished taking dex for 4 days and I can say I am feeling terrible, at least I was warned I could feel like this. Ive just rang the renal unit to see if I could stop taking the sodium bicarbonate tablets I was on because I am sure they are making me feel worse. They said I could stop them so fingers crossed I may feel a little better soon. Thanks for advice on the drinks.
Cheers,
Peter.

[eveParticipant]

Hi Janine and Peter

At least you cannot say your bored with all this,it's coming at you both from all directions:-P told you they are a good bunch on here,and will all help you.
I would take a sheet of paper with questions on,if you do not know what to ask ring Ellen she is a specialised myeloma nurse for number on here.
Helps if you have a small gadget for taping as you will not remember half of what's said,and will only focus on odd things.
Kidneys can regenerate and function near normal,some do some don't,Slim was lucky.
Ask what type of Myeloma you have?
Ask about all new trials as they give you the option sometimes to try new drugs.
A must question to consultant is what would you do,if you were me,look him in the eye,if he blinks a lot he is telling you porkies.:-0

My advice is eat drink and be merry,because you will go off food and drink,so enjoy your favourite food and tipple in moderation,this is a big learning curve, Slim and Eve both send are best wishes.

[adamsp41Participant]

Hi Peter…I have been on holiday so not able to post any replies but here goes:I had Asymptomatic Myeloma diagnosed in Jun 2009 and I too suffered from Acute Kidney Failure in Jul 2010 and lost 90% of my kidney function due to mm……and was put on the CRD pathway (Cyclophosamine..Revlimid and Dexmethasone) for 5 months (Jul – Nov 2010)…I then had a SCT in Jan 2011… and am now in Stringent Complete Remission…my kidneys now function at 46-49% ( my kidney consultant is so pleased she has discharged me from her care )I attend clinic on a monthly basis as I am on the Myeloma x1 trial…There is a lot of helpful and common sense advice given on here…so my 2penneth is…take it all slowly ( if you can )…don't look too far down the line…write ALL your questions down before attending clinic…I too attend Leeds and can only say that the care and support there is 1st class. ..if you have ANY worries you can contact them 24/7( have you been given the contact No's of all concerned)…with regard to fluid intake I was advised anything is ok…there are lots of bumpy rides ahead but stay positive and as Vicki and Colin say it is doable…if you wish to chat at all email me and we can swap Tel No's or even meet for a coffee…there is a Leeds Myeloma Support Group led by Rita Rumsey 01132520097 …best of luck and "kick it between the legs"…Phil

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