1: Has anyone had low sodium levels for no apparent reason and then found a way (themselves or thru doc) to raise them. Dont just mean taking extra salt.
2: Has anyone taken as a treatment hormone tablets....think they mean instead of normal chemo by infusion.
Reason i ask is my wifes 4th line treatment (Caelyx) has had to stop after 3 sessions as CA125 and scans show continued growth, well a lot of continued growth.
Were thinking/hoping of a trial, but Onc says sodium levels too low so until we go back next week, when they may have discovered a reason (via urine and blood tests) why this may be, thought i would ask you ladies.
They then said if that cannot be fixed then the only other option is trying hormone pill treatment. Now somewhere on here i have read about some people on this (well it sounds the same anyway) so hoping again someone can throw a bit more light on it until we see them next week.
It feels like they are getting ready to give up on her after 4th line chemo failed - so all normal chemo has failed since we started it 25 months ago.
Any info much appreciated.
Thanks
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I am so sorry, I hope you will find the answers you are looking for, perhaps you could give the helpline a ring and speak to Ruth Payne tel 0845 371 0554
My thoughts and prayers are with you best wishes x G x
Hi! Sorry to hear about this latest worry. My Mum had low sodium levels after her op, and anaesthetic always seems to affect her this way. She gets very tired, a bit confused and shaky too when her sodium levels go down. Her GP told her to eat salted crisps, at least one pack each day. I know it goes against all the healthy eating advice, but it brought her sodium levels up! The other Q, I don't know about, sorry.
Thanks Gwyn & Wendy....yeah we have tried adding salt etc but not doing the job and unless the sodium rises to a minimum level they say she could not go on any trial.
As for the hormone pills, think they may mean (but nothing said yet) something like Letrozole. I have looked it up on this site and quite a few seem to have had some benefit from it, which whilst it doesnt mean my wife will.....it doesnt meant she wont either, if thats the way we go.
My sodium levels go low when I vomit, have diarrhoea, and also since I have been on the intermittent fasting diet. There are lots of other causes, I am sure, Taking extra salt has been enough for me.
Thanks for the feedback, my wifes sodium levels have been low (123-128) for the past 2 years (that we know of) but nobody particularly bothered about it. It seems that for day to day stuff its no biggy....but for a trial they have to be at least 130....so we shall see next week if the tests show any particular reason. Though i wish they had looked into this a month or so ago when it was clear from rising CA125 that Caelyx wasnt working and it a trial would be the probable next stop....
I started Letrozole 2 weeks ago as a 7th line treatment. Obviously no feed back on it yet There seem to have been a couple of ladies on this site,who have had it and it has held things at bay for about a year. I don't know how many treatments they had had previously and I think the sooner you have it following chemo the better. Not sure about the sodium levels and letrozole. Good information about letrozole on the MacMillan drug information site
The common side effects seem fairly minimal and I am not having any problems from the medication
Jeez, 7th line treatment....that is inspiring, maybe not so hot for you though, but for others knowing that people can have 7 different lots is a positive.
As for Letrozole (if it ends up being that) - yeah it does seem that it helps a good few without any real side effects....so hopefully my wife will be one of them if it comes to it.
I can only wish you luck with this. It's a really tough time waiting for the next consultation and what they offer. I hope you get some helpful advice from here.
I understand that the first recommendation for people with low salt levels is to add more salt to food and or eat salty crisps. If this is not effective or acceptable a hormone treatment called fludrocortisone can be prescribed.
Hi Charlie....yeah she does the salt thing and the odd crisp or 3....but nothing seems to get it up to the level its meant to be. Perhaps the latest tests she did will find a reason. Thanks for the reply.
I understand that the first recommendation for people with low salt levels is to add more salt to food and or eat salty crisps. If this is not effective or acceptable a hormone treatment called fludrocortisone can be prescribed.
Hi, yes i have been on letrozole since May last year,after my 4th line treatment ca125 rising slowly but not as much as it did the the 1st month after finishing my last chemo, i have been feeling very well since i've been on it. Hope it works for your wife. jan
Hi and thanks for coming back.....if she goes on Letrozole i hope she has as good a response as you, like you she has had 4 lines of chemo and i guess we have to accept that no chemo is going to do it for her, certainly not in the long term anyway.
I had low sodium and magnesium levels whilst on chemo. They discovered this when I was hospitalised with pneumonia last year. I was given huge tablets that I had to dissolve in water (tasted disgusting!), afraid I don't know what they were as never saw the box. I was given magnesium on 2 occasions intravenously.
I am thinking of you both and sending my best wishes. Good luck and I hope and pray they find something that works for your dear wife.
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