Latest Update from my PCP - 08-14-14

Hello David,

will certainly pray for you.

My Dad has similar symptoms, never feels hungary, lost a lot of weight (was thin to start with). He tries to eat a little everyday but it is a struggle for him the food just doesn't go do right and after eating he feels sick (often is)

Wishing you the best of luck

Hi David I didn't know that you were back here on HW. It's so good to see you post. I'm very scared that you're having even more symptoms than you were when we last spoke in e-mail. I have been thinking about you. I have sent you a few e-mails, but didn't get an answer. I sure have been praying for you.

I really hope that the blood work that your doctor ordered shows something that could show what's causing the weight loss. Did you get the x-rays done today, or was it tomorrow when they are to be done?

I sure wish that this thing would get reversed. God Bless You my friend.

love and hugs
Loretta

David,

There's an article in today's New York Times Magazine about a patient with severe weight loss and muscle weakness. Maybe there's nothing here that your many doctors haven't already ruled out, but I suggest you read the article to see if it suggests anything. The patient's uncontrolled weight loss and muscle weakness are like what you've described, but the article doesn't mention the patient's appetite one way or the other. In his case the cause turned out to be a deficiency of copper, which we all normally get in trace amounts from various foods. In his case he turned out to have intestinal damage due to celiac disease that prevented absorption of copper. The article also discusses another possibility that was considered and ruled out before they reached the correct diagnosis "paraneoplastic syndrome" an inappropriate immune response in which antibodies that should target cancer cells also target healthy cells. He recovered after being put on temporary I.V. nutrition and given copper supplements Here's the link:

www.nytimes.com/interactive/2014/08/17/magazine/17-diagnosis.html?ref=magazine&_r=0#/#1

Jim

Loretta, so good to see my old friend. Kind of back, will see how things go, and how I am feeling and doing. Hope you have had some improvements.

Thanks, Moon. Appreciate that.

Jim, another poster in my other thread sent me that same link from the NY times. I have discussed the copper/zinc theory with my PCP, he said insurance firms have denied most doctors from testing for "metals" in the body for a long time now. He's seeing how he can work around that part. If he can't via my Medicare, then I plan to get the VA to check for it. I have a set appointment coming up in a few weeks with my VA PCP.
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Tried to eat a little more this weekend, but it was all by sheer force. All its done is caused me more bloated/full feeling, more cramps, etc. I really do feel and do better if I simply don't eat all. Will weigh in the morning, and see if I lost even more over the weekend. We went off to our perm. RV lots this weekend just to un-stress and chill out, that part was nice. But for me, there's always physical work to be done. I did too much as usual, and the heat was really getting to me.

David, every time I see a post of yours, I pray there will be a break for you. I hope you didn't lose a lot of weight this past week. My heart goes out to you, but I know you don't want sympathy - you want hope! That is what I pray you will find this week. Take care, and know we care!

Hugs,
Aimzee and Ron

David,

First let me say how happy I am to see you posting on here again. It truly wasn't the same without you. I had hoped that things would be a little bit better for you and I'm just gutted that it's even worse. I really have nothing to add other than my prayers and support for you as always. I was wondering if you take an anti nausea anti diarrhea type of medication around 30-45 minutes before eating if that would even help. I'm sure you have tried that to no avail though. I would keep up with the bland types of food like rice, mashed potatoes, crackers etc. etc. to get some calories in. I really hope things turn around because this has been going on for too long. Big hugs to you and so glad to see you again.

Much love and hugs,
Lynn

David,
You really must be fed up. (Pun intended, I always tend to have a weird sense of humor!)
Right. I don't usually mention how things were for my mum in her last days and weeks. She did not die of any kind of cancer, as shown by the very intense post mortem/autopsy that the coroner ordered - she had a really bad lung condition. However, she sure lost weight towards the end. And she hardly ever wanted to eat. What she did manage to eat/drink included the following:
Strong black coffee
bananas (soft not hard)
plain natural yoghurt
dark, very dark, chocolate

She did not eat the above as meals she just nibbled away at all times of the day and night.

I've got the impression you've tried just about every option, but I know you like chocolate.

All the best
Alf
PS in the context of HW folk not knowing what we all look like, this is me:
/www.blogger.com/profile/06756059813889878143

Jim, I cant move up my VA appointment with my VA PCP, but, that appointment is coming up in 2-3 weeks. If I tried to move it, it would only make it longer, so want to leave well enough alone. My VA dr. the last time I did see him, was on the starting end of my weight loss, but at that point, he wasn't too concerned. However, with all the weight lost in the past 6th month, pretty sure he will be shocked to offer me some help. Will mean I will probably have to see a VA specialist at the VA hospital in Columbia. But if that is what it takes to get help, I will gladly do it.

The new antidepressant (this is the 2nd one in a month) my PCP is having me try is doing nothing after 6 days, I will take it for 14 days, to give it a chance. It has had zero effect on my lack of appetite, regardless of its claim to make takers have "intense carb craving".

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Today, I made a home made minestrone soup, nice and healthy, and cut up some left offer chicken into the pot. Big mistake, I guess it was too rough with all the veggies cooked. Within 30 minutes, had violent stomach cramps and back aches, followed by an seemingly endless diarrhea session. It wasn't any fun. Now my stomach feels like someone kicked me hard.

Probably shouldn't have added to my woes, but just had a bowl of cereal with the almond milk. Already my stomach is revolting against what I just ate. Waiting to see how I react to it. Now you can see my sense of frustration with this problem. Eating nothing or less isn't helping the problem, and if I eat more, then it comes right back out with a heavy price to pay.
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Thanks Alf, like your sense of humor, even I need a good laugh from time to time. On the list your provided:

I don't drink coffee

Can't stand yogurt, yuck, can't get past the smell, reminds me of vomit, lol

I like bananas, but the usually give me issues

Chocolate, yes, been a lifetime chocolate junkie, until a few months ago. Would only eat dark chocolate, but now I can't hardly stand the taste, so the little bit I do eat, its mostly milk chocolate. When I gave up chocolate and sugary junk for Lent this year, it seemed to change my brain pattern about sweets. When I came off of Lent, I was no longer craving sugar all the time. Not saying that I don't like it now, but no longer have that strong drive for the sweets. I always blamed that habit on my English mother, as from the time I was little, we ate sweets all the time, and dinner wasn't complete without desert.

David

Thanks for your care and concern, Susan, that part is well appreciated.

However dire my situation may appear to an outsider, I do not consider it an Emergency Room event. Nor does my wife, a well experienced nurse, nor my civilian PCP, nor my VA PCP, nor my oncologist.

It is indeed a serious situation, which could lead to bad things. But not quite there yet. I am being monitored closely by several doctors.

Even though my weight loss is dramatic, according to the govt. weight charts and BMI charts, I am not even considered "underweight" by the charts. Getting closer, but not their yet. I find the BMI percents a bit disturbing, because so few "normal" people would ever make the cut, lol. And if you did, we would have a nation of stick people instead of a nation of obese people.

My energy levels have not diminished from before I lost the weight, already been dealing with extreme chronic fatigue for many years, as well as the chronic pain. My pain has neither worsened or gotten better as of the result of so much weight loss.

I do no feel depressed or sad, just concerned, as I should be.

If I felt my life was at immediate risk, I would consider doing something that drastic, but I honestly don't think it would help my situation. I could just hear them at the local ER (2 minutes from my house).

"What's your trouble, buddy? Most people would die to lose that much weight so fast. Oh, by the way, you look great for your age".

My regular PCP is watching closely, that is why he made a 2 week appointment instead of a 30 day appointment, I see him again next week late. His magic number is if I drop to or below 130 lbs. Then he said it might require some drastic action, even the possibility of hospitilzation.

I am not one to panic in any situation, and I choose not to panic or over react with this going on. It's been going on for going on 8 months now, so its not like it just happened overnight. I knew at some point, if I lost enough, it would be very visible to those that haven't seen me in a long time, even shocking.

If my situation changes for the worse, can be at the hospital in 2 minutes literally. For me to go to the VA Emergency, would involve a 1 1/2 to 2 hour road trip, as the local VA Outpatient Clinic does not accept anything that resembles an ER Visit. They would just tell me to go to a civilian hospital's ER room which happens to be across the street from the VA Clinic.

Again, appreciate your concern, but not quite at the ER stage of things. Even my physical therapy staff is well monitoring me closely once a week, so I have a lot of professional eyes on me at all times.

David