NETs, Toilet Paper, a rant and a little humor

Posted by Angie T @terryabk, Mar 28, 2020

NET, the TP crisis, a rant and a little humor

I’m sure the irony of the TP “shortage” is not lost on most of us. As someone who experiences way too many BMs each day, and frequent diarrhea, (sorry for the TMI) my household keeps a lot of the precious paper on hand. I’m sure in this community, I’m not alone in this. I see online posts and comments complaining about shoppers purchasing more than a couple packages at a time. Large TP purchases are our normal. I’m not condoning hoarding, purchasing carts-full at a time, but please, there are some of us that honestly require an abnormal amount of bog roll.

When reports of TP shortages first began, I made a contingency plan, just in case. We have plenty of rags, old towels, etc., which I could cut into wash cloth size and utilize as an alternative. A good rinse after use, toss into a bucket and launder every day or so. Great plan, or so I thought.

A few days into our sheltering in place, my good, OLD, reliable washing machine died. So, here I am, high risk, trying to stay home and I need a washer. I’m trying to shop for one online, but finding it difficult. I REALLY want to SEE what I’m buying. Laundry is an essential chore, but I have serious lung issues and am already on supplemental oxygen. Laundromats are not an option right now. My daughter comes to the rescue though and offers drop off laundry services at her home. She’s working from home now and can throw in our loads while she’s working. What a huge help. I haven’t asked her yet if she’s willing to wash our reusable butt wipes.

How are you dealing with this health crisis? Staying calm? Freaking out? Looking to humor? Praying a lot more. All of the above?

@gulzar

For me prescribed for diarrhea and digestion didn’t work and had no side effects with it. I still have digestion problem Creon didn’t help too My GI prescribed breathing test waiting for the results

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Hi @gulzar ,
Is the breathing test to check for SIBO? I hope you post when you get the results.

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@gulzar

For me prescribed for diarrhea and digestion didn’t work and had no side effects with it. I still have digestion problem Creon didn’t help too My GI prescribed breathing test waiting for the results

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Hello @gulzar .
I wanted to check in with you to say hello and to see how you are doing. When you last posted you were waiting for test results from a breathing test. I hope the test results gave you some helpful information. Could you provide an update on that?

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Hello Teresa
The test result was Negative it seems this due to the NET cancer and not to monthly injection because I had it before getting injection
Creon is not helping that much but stopped my diarrhea and checked my vitamins only B12 in in low level
Thanks
Ozzie

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@gulzar

Hello Teresa
The test result was Negative it seems this due to the NET cancer and not to monthly injection because I had it before getting injection
Creon is not helping that much but stopped my diarrhea and checked my vitamins only B12 in in low level
Thanks
Ozzie

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I so appreciate your update, @gulzar. How is everything else going with your NETs? Have you had any more treatments, surgeries, or new NETs? We all have different NETs journeys and I look forward to hearing how you are doing.

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My primary tumors removed have over 20 in liver they have been stable for over 4 years
My kidneys function creatinine was going up and improved so much after doctor ordered hydration before and after MRI it seems contrast hurting the kidneys

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@gulzar

My primary tumors removed have over 20 in liver they have been stable for over 4 years
My kidneys function creatinine was going up and improved so much after doctor ordered hydration before and after MRI it seems contrast hurting the kidneys

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Stability is such a great word when we are dealing with tumors, @gulzar! Congratulations on this. I'm also glad to hear that you have found a way to protect your kidneys before and after the MRI contrast. Do you get fluids by IV during the MRI or do you just drink lots of water?

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By IV and Creatinine dropped to 1.7 from 1.48 which is more than 25%. improvement my GFR was 48 now >60.

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@gulzar

By IV and Creatinine dropped to 1.7 from 1.48 which is more than 25%. improvement my GFR was 48 now >60.

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How wonderful, @gulzar, that your medical team found a way to protect your kidneys during the MRI with contrast. I appreciate your sharing that!

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@hopeful33250

Hello @terryabk,

Your situation does sound complicated, however, I think an appointment for a second opinion at Mayo in Rochester, Minnesota might be helpful. There is a NET specialist there. Dr. Thor Halfdanarson, who is one of the best in the country. Here is a talk he gave about NETs,

Once the COVID-19 situation settles down a bit perhaps you could see him.

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Hello. Could you please share the link again. I was able to watch it yesterday but it won’t show today. Thank you

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@lusine

Hello. Could you please share the link again. I was able to watch it yesterday but it won’t show today. Thank you

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@lusine

Let's see if this works,

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