NETs, Toilet Paper, a rant and a little humor

Posted by Angie T @terryabk, Mar 28 6:19pm

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?

So sorry to hear of your TP and washing machine problems, @terryabk. That is a terrible combination of problems. I do appreciate your ability to see some humor in this situation, lots of folks aren't able to do that!

Carcinoid syndrome does result in a lot of diarrhea. What have you tried to control diarrhea? Do you take monthly injections?

If you are comfortable sharing more, could you provide a bit more information about your history with NET?

REPLY
@hopeful33250

So sorry to hear of your TP and washing machine problems, @terryabk. That is a terrible combination of problems. I do appreciate your ability to see some humor in this situation, lots of folks aren't able to do that!

Carcinoid syndrome does result in a lot of diarrhea. What have you tried to control diarrhea? Do you take monthly injections?

If you are comfortable sharing more, could you provide a bit more information about your history with NET?

Jump to this post

I’d had GI issues for years, never mentioned it to doctors. I was diagnosed Lactose intolerance in College, and survived recurrent Neuro-fibrobSarcoma in my brachial plexus, which was diagnosed in 2005, even though I was diagnosed terminal in 2006. I was released by my local oncologist 8/2018. I still see my MD Anderson team, every 2 years. I just feel like a hypochondriac when I bring a health issue up. Probably partially due to 5 years of being told my pain was all in my head, prior to the sarcoma being found.

My PCP was treating me with iron infusions and concerned about my severe anemia for several years. Fall of 2018, lower right abdominal pain sent me for CT (clear) and then to Gastroenterologist. He did colonoscopy (normal), I did confide my GI issues. 4 months later, out of the blue I get a call from him. He wants to do an EDG, looking cause of the anemia. A polyp was found in the Fundus. Biopsy revealed the NET in the polyp, with no clear margins, 4/2019. The next 4 months were insane. 3 more EDGs, in an attempt to tattoo the NET area on the stomach. They were not able to ID the location, although the last one, 7/2019, did find pre-cancerous cells. Through all this testing, I’ve been diagnosed with Pernicious Anemia, chronic gastric inflammation, chronic gastritis, gastric autoimmune disorder, Barrett’s Esophagus. I experience flushing, always experience it with any bit of physical activity. My last oncology appointment at Siteman Cancer Center, St Louis, was 2/2020. I’m in a wait and see mode. My next EDG is supposed to be 7/2020, unless it gets cancelled as an “elective procedure“. After the polyp removal last April, my GI issues did lessen. However, they’ve been coming back lately. It’s been a gradual increase. My Chromogranin and Gastrin levels were quite elevated again, at my February appointment, although still lower than they were one year ago. I’m assuming the increase in symptoms means the tumor is back, which is what docs have been waiting for. They were talking of removing part of the stomach, definitely doing genetic testing on it. I had contacted my oncologist in March, following a particularly bad symptom week. He asked me to keep an eye on it, as it could be a virus. Then, COVID19 hit. I haven’t followed back up with my oncologist. I’m scared to step foot in a hospital. My sarcoma surgery (lack of reconstruction), 32 radiation treatments, 13 months of chemo, have left me a respiratory mess. I’m on oxygen and get bronchitis/pneumonia extremely easily, and have dual -chronic pleural effusions. I had a Balloon Sinu-plasti 8/2019, which has cut down my sinus infections, which always turn into bronchitis. I’m thinking I’ll just hang in here until the July EDG. The severe diarrhea is pretty sporadic right now, so I’m hoping a few more months won’t matter much. If it gets really bad, I’ll contact my doc. I know my lungs can’t handle COVID19. My right lung only has 10% functioning and for some unknown reason, the left isn’t able to compensate.

I had 85 gene genetic testing completed. No mutations and no variants were found. The genetic counselor was astonished. The only treatments I’m receiving for my new diagnosis are: B12 injections, Ranitidine, probiotics, iron supplements. I sometimes take Imodium but I try not to. I don’t drink alcohol, but have not found any dietary link to my GI symptoms.

I honestly feel pretty clueless about my situation. I’ve learned some from this forum and from online info. A LOT has changed in oncology since my prior treatment. While my sarcoma type and location were extremely rare, I guess my NET and having it in the stomach are even more rare. Lucky me. There just isn’t much info available. My oncologist at Siteman is experienced with NET, and works closely with MD Anderson. I was seen by a GI surgeon at MD Anderson 7/2019, after referral by my Sarcoma Oncologist at MDA. All the MDA GI surgeon said was, “not a candidate for surgery right now since tumor isn’t present”. I did not see a GI or NET oncologist at MDA.

So, here I sit, waiting for NET to grow back, and praying that I can avoid the Corona virus.

REPLY
@terryabk

I’d had GI issues for years, never mentioned it to doctors. I was diagnosed Lactose intolerance in College, and survived recurrent Neuro-fibrobSarcoma in my brachial plexus, which was diagnosed in 2005, even though I was diagnosed terminal in 2006. I was released by my local oncologist 8/2018. I still see my MD Anderson team, every 2 years. I just feel like a hypochondriac when I bring a health issue up. Probably partially due to 5 years of being told my pain was all in my head, prior to the sarcoma being found.

My PCP was treating me with iron infusions and concerned about my severe anemia for several years. Fall of 2018, lower right abdominal pain sent me for CT (clear) and then to Gastroenterologist. He did colonoscopy (normal), I did confide my GI issues. 4 months later, out of the blue I get a call from him. He wants to do an EDG, looking cause of the anemia. A polyp was found in the Fundus. Biopsy revealed the NET in the polyp, with no clear margins, 4/2019. The next 4 months were insane. 3 more EDGs, in an attempt to tattoo the NET area on the stomach. They were not able to ID the location, although the last one, 7/2019, did find pre-cancerous cells. Through all this testing, I’ve been diagnosed with Pernicious Anemia, chronic gastric inflammation, chronic gastritis, gastric autoimmune disorder, Barrett’s Esophagus. I experience flushing, always experience it with any bit of physical activity. My last oncology appointment at Siteman Cancer Center, St Louis, was 2/2020. I’m in a wait and see mode. My next EDG is supposed to be 7/2020, unless it gets cancelled as an “elective procedure“. After the polyp removal last April, my GI issues did lessen. However, they’ve been coming back lately. It’s been a gradual increase. My Chromogranin and Gastrin levels were quite elevated again, at my February appointment, although still lower than they were one year ago. I’m assuming the increase in symptoms means the tumor is back, which is what docs have been waiting for. They were talking of removing part of the stomach, definitely doing genetic testing on it. I had contacted my oncologist in March, following a particularly bad symptom week. He asked me to keep an eye on it, as it could be a virus. Then, COVID19 hit. I haven’t followed back up with my oncologist. I’m scared to step foot in a hospital. My sarcoma surgery (lack of reconstruction), 32 radiation treatments, 13 months of chemo, have left me a respiratory mess. I’m on oxygen and get bronchitis/pneumonia extremely easily, and have dual -chronic pleural effusions. I had a Balloon Sinu-plasti 8/2019, which has cut down my sinus infections, which always turn into bronchitis. I’m thinking I’ll just hang in here until the July EDG. The severe diarrhea is pretty sporadic right now, so I’m hoping a few more months won’t matter much. If it gets really bad, I’ll contact my doc. I know my lungs can’t handle COVID19. My right lung only has 10% functioning and for some unknown reason, the left isn’t able to compensate.

I had 85 gene genetic testing completed. No mutations and no variants were found. The genetic counselor was astonished. The only treatments I’m receiving for my new diagnosis are: B12 injections, Ranitidine, probiotics, iron supplements. I sometimes take Imodium but I try not to. I don’t drink alcohol, but have not found any dietary link to my GI symptoms.

I honestly feel pretty clueless about my situation. I’ve learned some from this forum and from online info. A LOT has changed in oncology since my prior treatment. While my sarcoma type and location were extremely rare, I guess my NET and having it in the stomach are even more rare. Lucky me. There just isn’t much info available. My oncologist at Siteman is experienced with NET, and works closely with MD Anderson. I was seen by a GI surgeon at MD Anderson 7/2019, after referral by my Sarcoma Oncologist at MDA. All the MDA GI surgeon said was, “not a candidate for surgery right now since tumor isn’t present”. I did not see a GI or NET oncologist at MDA.

So, here I sit, waiting for NET to grow back, and praying that I can avoid the Corona virus.

Jump to this post

Hello @terryabk,

I appreciate your sharing more about your history with NETs. It seems that all of us who have NETs have interesting stories about our journey to a diagnosis. It just isn't a diagnosis with a clear path, but generally takes twists and turns along the way as yours did.

I have had three NETs, all in the duodenal bulb, in 2003, 2005 and 2016. The doctors were not expecting that third one to show up, but NETs are generally not typical and they don't follow the rules!

The tests that you do not mention having are the Galliuim-68 and the FDG PET scan. Perhaps you did have these? If so, did they show other NETs?
https://connect.mayoclinic.org/discussion/gallium-68/
https://connect.mayoclinic.org/discussion/fdg-pet-scan-vs-68ga-dotatate-pet-scan-for-neuroendocrine-cancer/
As you mention being seen at MD Anderson, I'm assuming that you live in Texas? Have you ever been seen by the NET experts in New Orleans or at a Mayo facility? There is a Mayo facility in Jacksonville, FL. Given your history and the fact that your current oncologist has no other treatment options for you, have you considered a second opinion at one of these locations?

REPLY
@hopeful33250

Hello @terryabk,

I appreciate your sharing more about your history with NETs. It seems that all of us who have NETs have interesting stories about our journey to a diagnosis. It just isn't a diagnosis with a clear path, but generally takes twists and turns along the way as yours did.

I have had three NETs, all in the duodenal bulb, in 2003, 2005 and 2016. The doctors were not expecting that third one to show up, but NETs are generally not typical and they don't follow the rules!

The tests that you do not mention having are the Galliuim-68 and the FDG PET scan. Perhaps you did have these? If so, did they show other NETs?
https://connect.mayoclinic.org/discussion/gallium-68/
https://connect.mayoclinic.org/discussion/fdg-pet-scan-vs-68ga-dotatate-pet-scan-for-neuroendocrine-cancer/
As you mention being seen at MD Anderson, I'm assuming that you live in Texas? Have you ever been seen by the NET experts in New Orleans or at a Mayo facility? There is a Mayo facility in Jacksonville, FL. Given your history and the fact that your current oncologist has no other treatment options for you, have you considered a second opinion at one of these locations?

Jump to this post

I have not had any of the specialized scans, only regular CTs. Insurance wouldn’t cooperate. They denied it based on the CT not showing anything. Which, is confusing to me as everything I’ve read says CT isn’t very good at showing NETs and my oncologist told me CTs have a very hard time showing inside the stomach. If it isn’t a reliable test, why use it to validate another type of test?

I live in Missouri, just outside of St Louis. My oncologist is at Siteman Cancer Center in St Louis. I ended up at MD Anderson for my sarcoma, after I contacted a doctor there to ask him a question after my cancer had recurred and was deemed inoperable, incurable and radiation failed to slow progression. The amazing doc invited me to be seen at MD Anderson and got me a quick appointment. My local sarcoma oncologist and my MDA sarcoma oncologist worked together, but my chemo treatments were done locally. When the NET was diagnosed, I immediately reached out to both sarcoma oncologists, who hooked me up with my local NET oncologist at Siteman, and the GI oncology department at MDA, where I only met with an oncology-surgeon.

I have wondered about possibly seeking a third opinion. With 2 oncologists telling me there isn’t anything they can do for me until the NET grows back, I feel a bit in the dark. I asked if I should be seeing an endocrinologist or any other doc with all of my most recent diagnosis, and although I was highly encouraged to seek additional oncology opinions, I was told there was no need for me to see another specialist other than the gastroenterologist. I was given all the other diagnosis but I really have no info on what they mean other than I need the B12 injections.

To complicate matters further, a month after my NET diagnosis, my wonderful PCP, took a medical hiatus with a plan to switch to a new medical group, so I lost him as a resource as well, but planned to follow him to his new practice. Then, his plans fell through and he ended up moving to the other side of the state and opening a practice in his hometown. My new PCP hasn’t been much help as far as info either, just giving me a couple NET sites to refer to, both of which I had already found. She offered me nothing on the other diagnosis. I’m not sure if I’m going to stay with her, but I’ve only seen her once and I’m not ready to move on just yet.

I’ll keep in mind the possibility of another opinion at Mayo. However, with this virus issue, I’m terrified of stepping foot in a hospital and getting exposed. The outcome would not be good, due to my other health issues. At that point, the NET wouldn’t matter either, I guess.

Are there treatment options available that I’m not being offered? I think part of the problem is the lack of info on my NET tumor. The gastroenterologist that found the NET, is with a small hospital, close to my home and is in a different medical group than my Siteman. (I have switched to one that is the same network as Siteman) The only tissue my oncologist has had to work with is the slides that were already stained by the original pathologist. My oncologist really wants (needs?) more info regarding my tumor, but has no way to access it until the tumor re-grows and he can get tissue samples. The initial pathology suggested that my NET was type 3. However, my local oncologist, pathologists at Siteman and MDA, and the surgeon at MDA all feel it is actually type 1. Given the lack of specimens at this point in time, I’m not sure if any other oncologist could offer me other options.
It’s all so complicated and confusing.

REPLY

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.

REPLY
@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.

Jump to this post

Thank you.

REPLY
@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.

Jump to this post

Do you know if tele-appointments are available? It’s very unsafe for me to travel right now.

REPLY

@terryabk

Angie, Here is the information for contacting Mayo for appointments, http://mayocl.in/1mtmR63. You would need to call them to ask that question. It might be good to go after the COVID-19 situation settles down, but call and see what they have to say.

REPLY
@hopeful33250

@terryabk

Angie, Here is the information for contacting Mayo for appointments, http://mayocl.in/1mtmR63. You would need to call them to ask that question. It might be good to go after the COVID-19 situation settles down, but call and see what they have to say.

Jump to this post

Thank you

REPLY
In reply to @terryabk "Thank you" + (show)
@terryabk

@terryabk Your welcome, Angie. Post your questions or concerns at any time!

REPLY
In reply to @terryabk "Thank you" + (show)
@terryabk

Hello @terryabk

I was just wondering how you were feeling these days. Have you had any other thoughts on seeking a second opinion?

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@terryabk

Do you know if tele-appointments are available? It’s very unsafe for me to travel right now.

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@terryabk Hello Angie

I was thinking about you. When you last posted you were having a lot of symptoms. How you are feeling now? Have you been able to get a second opinion?

REPLY
@hopeful33250

@terryabk Hello Angie

I was thinking about you. When you last posted you were having a lot of symptoms. How you are feeling now? Have you been able to get a second opinion?

Jump to this post

Thank you for checking in. I’ve still been having symptoms. I’m staying open to the possibility of seeing someone at Mayo. However, add another wrench to the story. June 23 I had emergency gall bladder surgery. Im really hoping some of my symptoms were actually from my gall bladder. I’ve had constant GI distress since Friday when my system started working again, but have been assured this is normal for about a month following gall bladder removal. However, what they can’t tell me is going forward from one month, what I might expect with no gall bladder given my history. I’m scheduled for post-op surgeon visit 7/6, an MRI in July to check the common duct for blockage (an ERCP was scheduled after my surgery, but later deemed not necessary), an EDG in July to check Barrett’s Esophagus status and to see if NET has regrown in Fundus and tattoo the area for possible future surgery. I see my oncologist in early August. My body apparently likes to cause drama and stress.

REPLY

Hello @terryabk

I'm appreciative that you posted an update. I am sorry to hear of your emergency gallbladder surgery. I had my gallbladder removed during one my of carcinoid surgeries so I'm never sure if what I experienced after the surgery was a result of the gallbladder removal or a combination of the removal as well as the more invasive carcinoid surgery of the duodenal bulb. I really understand what you mean about a body that likes drama!

I would encourage you to read (and post if you want to) in other discussions about post-gallbladder surgery problems. It might offer you a realistic perspective as to what to expect during the next few weeks or months. You do need to give your digestive tract some time to adjust to the missing gallbladder.

Here are the links for those discussions:
https://connect.mayoclinic.org/discussion/nausea-pain-and-headaches-after-gallbladder-laparoscopic-surgery/
https://connect.mayoclinic.org/discussion/gallbladder-surgery/
Was your surgery done laparoscopically or was it an open surgery?

REPLY
@hopeful33250

Hello @terryabk

I'm appreciative that you posted an update. I am sorry to hear of your emergency gallbladder surgery. I had my gallbladder removed during one my of carcinoid surgeries so I'm never sure if what I experienced after the surgery was a result of the gallbladder removal or a combination of the removal as well as the more invasive carcinoid surgery of the duodenal bulb. I really understand what you mean about a body that likes drama!

I would encourage you to read (and post if you want to) in other discussions about post-gallbladder surgery problems. It might offer you a realistic perspective as to what to expect during the next few weeks or months. You do need to give your digestive tract some time to adjust to the missing gallbladder.

Here are the links for those discussions:
https://connect.mayoclinic.org/discussion/nausea-pain-and-headaches-after-gallbladder-laparoscopic-surgery/
https://connect.mayoclinic.org/discussion/gallbladder-surgery/
Was your surgery done laparoscopically or was it an open surgery?

Jump to this post

Thank you for the link. Luckily it was laparoscopic surgery. My abdomen was so inflamed the surgery took > 1.5 hours (estimated 45-60 minutes), because surgeon had trouble getting gall bladder out. I’m grateful she stuck with it, I’d much rather deal with extra bruising and swelling than a traditional incision. I’m healing quite quickly, so I can’t complain.

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