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jbistrong
Posts: 4
Joined: Wed Jun 18, 2014 4:28 pm

XXXtreme Thirst!! Stage IV "terminal"

Postby jbistrong » Wed Jun 18, 2014 4:56 pm

My brother is 1 year out from his initial diagnosis. He's had a whipple surgery initially, and then a double intestinal bypass a month and half ago. The surgeon reported that he saw cancer all throughout his stomach and said we'd need a miracle. He opted out of chemo because there was no way he could handle it and they said the best it would do would be to add a few months of life.

We have already reaped full benefits from conventional medicine. They have already sent us home to die 4-5 times and have absolutely nothing more to offer. We've been to multiple facilities and seen multiple doctors. Standard protocol seems to be to not touch anyone at his stage in his conditions.

Luckily, we are a big family and have about 20-30 people who have been working around the clock caring for him. Friends and family are gathering medical supplies, I.V's, saline drips, etc. We use hospice for meds (although, we have stopped medicating him).

He has not eaten in a month and half and we are working hard to administer treatments under the guidance of a gentleman who's mission it is to help people cure their cancer at any stage.

We are currently doing a treatment that consists of DCA (dichloroacetate) and Artemesinin. We have stopped the cancer from spreading---he is off meds and not in any pain; our only issue is stopping him from wanted to drink and have sugar. He's turned into a monster and is obsessed with drinking around the clock. Says he's dying of thirst. This is in the way of us administering his treatments because if he drinks more than a couple of sips at a time he vomits or we have to pump his stomach. He has a feeding tube in his stomach that we use to pump bile and liquids out when he feels the need to vomit. He's worse than the worst drug addict right not. . .literally having people who don't know the situation bring him gatorade or any type of drinks with sugar at every chance he gets. He will escape to the kitchen at 3 in the morning and go on a 2 hour drinking binge while pumping what he drinks right out simultaneously. He's pummeled all of us to exhaustion.

We believe this treatment can reverse everything and kick his system on again. But without quenching his need to drink uncontrollably around the clock it's become almost impossible. He's no longer throwing up; so we've got passed that. . .but still difficulty to treat due to his obsessiveness with drinking.

Has anyone heard of this? Basically, we are trying to find out how to stop this drinking compulsion. Any ideas of what is causing this compulsion? He is not dehydrated because we have him on constant saline drip. The hospice doctor comes by every two days and says he's perfect. All his vitals are perfect. . he's not in any pain. . .he's hydrated. . .but still, can't stop craving drinking.

Any insight or help would mean the world to us. He is incredibly strong and has already lived through the worst and we know he can pull through.

Thanks in advance!
Last edited by jbistrong on Wed Jun 18, 2014 6:04 pm, edited 2 times in total.

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: XXXtreme Thirst!! Stage IV "terminal"

Postby PCUK Nurse Jeni » Wed Jun 18, 2014 5:18 pm

Hi there,

Has anyone checked his blood sugar levels?

It is very possible that his blood sugar levels are high and this is what is causing the extreme thirst. When a person has a high blood sugar, it draws fluid from the body, making them feel constantly thirsty - like an unnatural thirst, which is often unquenchable. They also can crave sweet things, though not always.

I would ask that a blood sugar test be done without delay, and also, a simple urine test which can show up any ketones or sugar in the urine.

Hope you get some help,

Kind regards,

Jeni.

jbistrong
Posts: 4
Joined: Wed Jun 18, 2014 4:28 pm

Re: XXXtreme Thirst!! Stage IV "terminal"

Postby jbistrong » Wed Jun 18, 2014 6:13 pm

Thanks for the quick reply Jeni. The last tests we ran were about a week and a half ago. Ketones were negative. Glucose was high at 148 with reference being 70-126.

In the event of high blood sugar levels, would knowing this to be the cause give light to a way of treating this?

Thank you so much!!

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: XXXtreme Thirst!! Stage IV "terminal"

Postby Cathy » Wed Jun 18, 2014 10:05 pm

Hi

Welcome to the forum and I am so sorry to hear of your brother. You are in a good supportitive place here. And the nurses (as you will see from the previous post) are super.

Sounds like he might possibly have diabetes?. My partner developed this and steroids in his treatment made it worse. Basically, very very thirsty and going to the loo at lot. Diabetes can be controlled by metformin and insulin but needs regular blood sugar monitoring (they can provide a little gizmo that does this). Also, is he perspiring much? Again PC can cause that.

Very best of luck

Cathy xxx

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: XXXtreme Thirst!! Stage IV "terminal"

Postby MSH » Thu Jun 19, 2014 1:13 am

Worth checking his calcium, and if normal urine and blood osmolality.

I'd caution against getting too hopeful.

jbistrong
Posts: 4
Joined: Wed Jun 18, 2014 4:28 pm

Re: XXXtreme Thirst!! Stage IV "terminal"

Postby jbistrong » Fri Jul 04, 2014 3:45 am

Just wanted to share an update. . .the saga has continued. Long story short, we ended up back at the hospital earlier this week. His vitals had dropped and it was clear he needed to head to the hospital. He was badly malnourished and dehydrated. We had been using a feeding tube that the doctors had recently put in and told us it was for feeding. So for a month all of our treatments and nourishments were going into this tube. After a few days in the hospital, they tell us this tube was for draining only and only went into the stomach. You can imagine how mad we were after about 30 of us had been working all month to treat and care for him. We were fight with someone who was literally dying of thirst. On top of that his picc line was not working so his I.V. was also not taking . After two days we were able to stabilize him. Meanwhile we had to hear all over again gloom and doom from every doctor who saw us. . .but we were ready for this. . .at this point we realize no one could possible understand what was happening; especially just by looking at the current reports for the first time. We were feeling quite rejected, especially after how hard we'd been working and how hopeful we've remained. So, suddenly after months, he stopped asking for something to drink around the clock (he was going through 8-9 gallons of water a night); grant it, it was just pumping right out of him. Then today, we get a visit from the Oncologist who seemed to be dumfounded. My brother's tumor markers have dropped by 15,000. He said he's never heard of tumor markers dropping with someone in this stage. Suddenly, not only have we been recharged, but my brother is calm, not asking for anything to drink, sleeping (hasn't done that in a long time) and has already gained 8 pounds in three days. Has anyone ever heard of tumor markers doing something like this in such an advanced stage of cancer? We are wondering what the results would be if the feeding tube was actually a feeding tube and he was getting the full treatments as prescribed. . .Thanks for giving me a place get this experience out. . .best,
JB

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: XXXtreme Thirst!! Stage IV "terminal"

Postby Slewis7313 » Fri Jul 04, 2014 4:33 am

What a week of contrasting emotions! To go from the frustration (and anger) of the mess-up with the feeding tube to the unexpected and drastic drop in tumour marker must have your heads spinning. The latter appears to be really positive in conjunction with the weight gain, even if unexplained at this time. I have certainly not come across such a positive, drastic change in marker but maybe others here have. Does the Oncologist have a revised plan of action based on this new information? I wish you both luck and hope this development is a sign of more positives to come.

Take care

Steve
X

Ofmenandangels
Posts: 5
Joined: Thu Jul 03, 2014 9:31 pm

Re: XXXtreme Thirst!! Stage IV "terminal"

Postby Ofmenandangels » Wed Jul 16, 2014 2:44 pm

Hi,
My brother has recently been diagnosed as terminal with PC and liver metastasis. Do you have any updates on how your brother is doing?

Kind regards

jbistrong
Posts: 4
Joined: Wed Jun 18, 2014 4:28 pm

Re: XXXtreme Thirst!! Stage IV "terminal"

Postby jbistrong » Wed Jul 16, 2014 6:13 pm

He's still hanging in there. The biggest challenge that we have had was finding a doctor who would continue to treat him. Once they label "terminal" they don't seem to have any protocols in place besides palliative care and chemotherapy (which research show at best prolongs life by 1-2 months) and no one wants to touch the patient in this situation. We're in the states (which we're finding out creates a lot of limitations on the scope of treatments we can receive from medical doctors.

We finally tracked down a Dr. who specifically treats advanced stage cancer patients who have been turned away from conventional medicine. He mixes conventional and non-conventional treatments. He has a good success rate and we just started treatment this week. If we could have found someone like this 3-4 months ago we'd be in a much better position. We've been treating him ourself at home and we're exhausted. But by doing this we've remained hopeful. Every time we go near the hospital it's doom and gloom. Which we've accepted. . .but we still want care even if it's for comfort purposes. Most treatments at this stage are going to comfort the patient anyways, so it's really the same: treating cancer & making a patient comfortable.

My brother's situation is difficult because he can't take anything by mouth; so the main thing we're fighting is nutrition.

Stay positive, no matter what the doctors tell you and research hard in finding someone who will continue to treat your brother and not just tell you "sorry". As long as someone is still alive there's always hope. There are plenty of stories out there of people recovering during all stages.

Good luck. . .I'll keep you posted on my brother's progress. Best,
jb