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Hyponatremia .

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

I have hyponatremia which translates to low serum sodium levels . Normal is 135-145 . Mine is around 125 - 126 . In order to keep my sodium levels up I have to include a truly large amount of salt in my diet . In order to achive a level above 130 I have to eat on the order of 16,000 mg of sodium . After consumning that amount of sodium the highest my sodium has been , since starting cancer treatment , was 135 . A requirement of getting Nivolumab is that serum sodium levels have to be above 130 so , as you can imagine this is very important to me . I have to consumn the 16,000 mg of sodium early in the morning before I go for  treatment and while making the over one hundred mile drive to Ceveland . That is every three weeks . Between time I eat large amounts of salt on my food . If I don't the result is horific muscle cramps . I'm getting severe cramps in my fingers and thumbes just typeing this .

I recently found an article at www.news-medical.net . If you want to read it just go to the site and type " low sodium levels " in the search field . It really got my attention . It stated that people with low sodium are less likly to respond well to targeted treatment for kidney cancer . Also less likley to survive and possibly even more likely to get kidney cancer in the first place and to have more aggressive cancer growth . My tumors were growing very fast during the time I was on Sutent before starting Nivolumab .

This caused me to start wondering if any of you guys have low serum sodium levels ?

NanoSecond's picture
NanoSecond
Posts: 547
Joined: Oct 2012

Hi Frank.  I do not suffer from low sodium.  But wanted you to keep in mind that Nivolumab is an immune therapy - not the kind of targeted TKI therapy that the study you mention is referring to.  So, if you can manage to keep your sodium levels in the range necessary to qualify for the clinical trial there is still every reason to be optimistic that Nivolumab will be successful for you.

Also, the sodium issue is likely a key clue as to what metabolic pathways are being disrupted to provoke and sustain your version of aggressive renal cancer.  So you might want to find out if there are any experts on sodium deficiency who might be able to shed some light on what is going on inside you.

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

As always your reply is insiteful and helpful .

I have invested a considerable amount of time and effort trying to find information on hyponatremia with little success . I think it is one of those situations where it is a condition few people have a problem with so not a lot of research has been done . I can understand that .

I've found some of the most helpful information in replaceing sodium from people involved in athletics which makes sense .

Medical professionals I have talked to have given me no good explanation as to why I actually have the problem .

NanoSecond's picture
NanoSecond
Posts: 547
Joined: Oct 2012

You have seen this paper, correct?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2275758/

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

But I was up way past my bedtime last night reading it . It's loaded with the kind of information I've been looking for and couldn't find .

I'm sleepy this morning but very appreciative Nano .

Thanks very much .

NanoSecond's picture
NanoSecond
Posts: 547
Joined: Oct 2012

You are most welcome Frank.

Please keep us up to date on how you progress.  In particular I hope and pray that you get a chance to partake in the Nivolumab clinical trial.  With this and several other new immune therapies that are in various stages of development they are getting close.  In my opinion, the missing piece of the puzzle will be to combine them with metabolic therapies (most of which are yet to be introduced I am sad to say).

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

As a matter of fact I've been in the phase 2 dose ranging trial for Nivolumab for a little over two years . I get Nivolumab alone . This treatment saved my life . My tumors which had been growing out of control have completely disappeared .

Lets hope and pray that Nivolumab reaches approval as soon as possible . I have no doubt that that many , many people can be helped by it .

NanoSecond's picture
NanoSecond
Posts: 547
Joined: Oct 2012

Thanks for that "small" clarification, Frank.  I am not sure how I got so confused but that is even better news.  May you continue on Nivolumab and stay NvED for decades to come!

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