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jerryskids

I have Cancer :/

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5 minutes ago, Thornton Melon said:

 :thumbsup: Good to hear, jerry. But come on, you and your wife did more than just hug each other, right? ;)

He meant "Tug" 

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1 hour ago, jerryskids said:

Had my quarterly scans last week.  I'm due for an update anyway so here goes:

TL;dr -- Scans are good/stable.  Tummy is upset and one blood cell count is bad, probably both due to immunotherapy and, oddly, both may be a good sign that it's working.

Long version:

Last week was scan week; 11 out of 12 weeks I live in somewhat blissful ignorance that I may be dying, then the 12th week I stress out about the upcoming scans.  Tuesday of that week I also noticed some additional GI challenges.  In hindsight things haven't exactly been great in that department but something seemed... a little different, enough that I noticed.  A little more nausea than I've had, even during chemo.  It would come and go around noon, last maybe an hour or two.  I tried to correlate it to food intake but wasn't successful.  Bloodwork and scans were Thursday, with doctor visit Friday.  They don't post the scan results right away but they do the bloodwork, and as I looked through it I noticed a reading out of whack:  something called eosinophils was 3X out of range, in the past it was always well in range.  Nobody is really sure what they do but they are made in the bone marrow and can indicate various problems, like certain fungal infections (prolly not in my case) or blood cancers... :mellow: umm, might it have spread to my blood?  A further study I found discussed two people on Keytruda who had high measurements; again they didn't know why but in the end they took them off of Keytruda.  Also not a great option, as the treatment seems to be working.

So we head to the the doctor visit Friday.  Doc walks in all happy, shows the scan results, they are good again.  One little 4mm cyst/whatever that they see every time and never changes, otherwise all clear.  I was not to be deterred from being Eeyore though and said "but Doc, what about my Eosinophils?!"

Basically he said it's probably nothing, stop worrying, did I mention your scans are great you blithering idiot?  We'll watch them and see how it goes.

It did seem wrong to not be happy with those scans, but I just couldn't shake this eosinophil thing.  Until Saturday, when my wife googled around.  She is better at searching than I am, and she found two interesting studies.  One showed that it was eventually discovered that high readings are quite common in Keytruda patients; 22% in a large study.  And those with higher readings tended to have better outcomes (i.e., lived longer).  A second analysis showed that side effects like my GI issues (also not uncommon) are correlated to efficacy, double bonus!

So Saturday morning we finally exhaled (metaphorically) and hugged each other that things were looking good.  :cheers: 

Great news!  :cheers:

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Good news. :thumbsup:

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1 hour ago, jerryskids said:

Had my quarterly scans last week.  I'm due for an update anyway so here goes:

TL;dr -- Scans are good/stable.  Tummy is upset and one blood cell count is bad, probably both due to immunotherapy and, oddly, both may be a good sign that it's working.

Long version:

Last week was scan week; 11 out of 12 weeks I live in somewhat blissful ignorance that I may be dying, then the 12th week I stress out about the upcoming scans.  Tuesday of that week I also noticed some additional GI challenges.  In hindsight things haven't exactly been great in that department but something seemed... a little different, enough that I noticed.  A little more nausea than I've had, even during chemo.  It would come and go around noon, last maybe an hour or two.  I tried to correlate it to food intake but wasn't successful.  Bloodwork and scans were Thursday, with doctor visit Friday.  They don't post the scan results right away but they do the bloodwork, and as I looked through it I noticed a reading out of whack:  something called eosinophils was 3X out of range, in the past it was always well in range.  Nobody is really sure what they do but they are made in the bone marrow and can indicate various problems, like certain fungal infections (prolly not in my case) or blood cancers... :mellow: umm, might it have spread to my blood?  A further study I found discussed two people on Keytruda who had high measurements; again they didn't know why but in the end they took them off of Keytruda.  Also not a great option, as the treatment seems to be working.

So we head to the the doctor visit Friday.  Doc walks in all happy, shows the scan results, they are good again.  One little 4mm cyst/whatever that they see every time and never changes, otherwise all clear.  I was not to be deterred from being Eeyore though and said "but Doc, what about my Eosinophils?!"

Basically he said it's probably nothing, stop worrying, did I mention your scans are great you blithering idiot?  We'll watch them and see how it goes.

It did seem wrong to not be happy with those scans, but I just couldn't shake this eosinophil thing.  Until Saturday, when my wife googled around.  She is better at searching than I am, and she found two interesting studies.  One showed that it was eventually discovered that high readings are quite common in Keytruda patients; 22% in a large study.  And those with higher readings tended to have better outcomes (i.e., lived longer).  A second analysis showed that side effects like my GI issues (also not uncommon) are correlated to efficacy, double bonus!

So Saturday morning we finally exhaled (metaphorically) and hugged each other that things were looking good.  :cheers: 

LOOK AT MEEEEEEEEEE

But seriously...Good stuff man.  Crappy advice from a guy not living with this, but try not to overthink it.  

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7 hours ago, Thornton Melon said:

 :thumbsup: Good to hear, jerry. But come on, you and your wife did more than just hug each other, right? ;)

"I've read the stories here in Penthouse Forum but never thought it would happen to me..." :o 

Seriously, Saturday was a weird day because after that good morning we went to a memorial service for a friend who died of pancreatic cancer, only 50 yrs old.  Then later in the day we did a zoom call with my wife's family to commemorate the one year anniversary of my FIL's death.  So it was a bit of an emotional day.

 

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1 hour ago, jerryskids said:

"I've read the stories here in Penthouse Forum but never thought it would happen to me..." :o 

Seriously, Saturday was a weird day because after that good morning we went to a memorial service for a friend who died of pancreatic cancer, only 50 yrs old.  Then later in the day we did a zoom call with my wife's family to commemorate the one year anniversary of my FIL's death.  So it was a bit of an emotional day.

 

God damn brother. 

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10 hours ago, shorepatrol said:

God damn brother. 

Yeah, the friend who died was the mom of a girl my daughter danced with for years.  You get to know the parents pretty well from countless hours of rehearsals, competitions, travel, etc.  Apparently she was diagnosed in late October or early November, and dead by the end of the year.  That pancreatic shiot is no joke.  :( 

 

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On 1/14/2022 at 10:41 AM, jerryskids said:

So Saturday morning we finally exhaled (metaphorically) and hugged each other that things were looking good.  :cheers: 

This has been a pretty scary thread.  One that makes prayers get said.  Keep up the fight!

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3 minutes ago, BudBro said:

This has been a pretty scary thread.  One that makes prayers get said.  Keep up the fight!

Thank you, and thanks to all for the comments.  :thumbsup: 

A little update:  I've continued to have GI issues, which we learned from more searching today could be due to the eosinophil problem and associated food correlations.  Eggs, dairy, wheat, tree nuts, soy, and shellfish are listed as the main culprits, and I love all of those.  I've noticed a correlation with eggs (twice) and shellfish (once) with issues after meals.  I've had the other four and not noticed anything, but nevertheless have started the process of limiting/eliminating them all from my diet as a test.  My 1/2 day of data says so far so good. :D but I hope it's limited to eggs and shellfish.  But that is greedy: if I could eliminate the issues with diet changes and in doing so not stop getting the treatment, that is a huge win.

I don't drink much anymore but I'm glad that alcohol wasn't on the list.  :cheers:

 

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18 hours ago, jerryskids said:

Thank you, and thanks to all for the comments.  :thumbsup: 

A little update:  I've continued to have GI issues, which we learned from more searching today could be due to the eosinophil problem and associated food correlations.  Eggs, dairy, wheat, tree nuts, soy, and shellfish are listed as the main culprits, and I love all of those.  I've noticed a correlation with eggs (twice) and shellfish (once) with issues after meals.  I've had the other four and not noticed anything, but nevertheless have started the process of limiting/eliminating them all from my diet as a test.  My 1/2 day of data says so far so good. :D but I hope it's limited to eggs and shellfish.  But that is greedy: if I could eliminate the issues with diet changes and in doing so not stop getting the treatment, that is a huge win.

I don't drink much anymore but I'm glad that alcohol wasn't on the list.  :cheers:

 

 

I have high eosinophil in my throat, I am unsure how long it has been going on but my GI doctor seems to be worried but I have no other problems with my esophagus. I am unsure what my long term plan is, but I have not been wanting to do a restrictive diet since the only way to determine if it works is to get lots of upper endoscopies.

Edit, not sure why I called it EKG the first time.

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On 1/14/2022 at 9:41 AM, jerryskids said:

Had my quarterly scans last week.  I'm due for an update anyway so here goes:

TL;dr -- Scans are good/stable.  Tummy is upset and one blood cell count is bad, probably both due to immunotherapy and, oddly, both may be a good sign that it's working.

 

You're a true hero for posting this at the top. 

Glad to hear all is going well. 

 

 

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5 hours ago, MTSkiBum said:

 

I have high eosinophil in my throat, I am unsure how long it has been going on but my GI doctor seems to be worried but I have no other problems with my esophagus. I am unsure what my long term plan is, but I have not been wanting to do a restrictive diet since the only way to determine if it works is to get lots of upper endoscopies.

Edit, not sure why I called it EKG the first time.

Interesting, how did they find it?  Were you experiencing some symptoms, or was it in a normal blood test?

It seems that the esophagus is relatively common for eosinophil problems.  

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Just now, jerryskids said:

Interesting, how did they find it?  Were you experiencing some symptoms, or was it in a normal blood test?

It seems that the esophagus is relatively common for eosinophil problems.  

I have/had an inflamed stomach lining and they gave me an endoscopy to get biopsies.

During the endoscopy is when the eosinophil issue in the throat was discovered. I have no symptoms though from the eosinophils.

 

Do you have symptoms?

 

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2 hours ago, TheNewGirl said:

You're a true hero for posting this at the top. 

Glad to hear all is going well. 

 

 

Thanks.  I thought about leaving you all hanging as you read the long version so that you could experience a little of the tension that we had, but I decided to be nice instead.  :D 

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4 minutes ago, MTSkiBum said:

I have/had an inflamed stomach lining and they gave me an endoscopy to get biopsies.

During the endoscopy is when the eosinophil issue in the throat was discovered. I have no symptoms though from the eosinophils.

 

Do you have symptoms?

 

Well... the main one is sitting on the toilet for an hour with loose stools and my stomach in a bit of a knot.  Then it's done and it's like nothing happened. I've also lost a little weight, and I don't have too much to lose (poor nutrient absorption seems like a possibility with this as well).

I haven't had any biopsies etc. to find if there is a localized problem area.  I'm hoping to manage it with diet and not make a big deal out of it with the doc, so that it doesn't impact my treatment schedule.

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2 minutes ago, jerryskids said:

Well... the main one is sitting on the toilet for an hour with loose stools and my stomach in a bit of a knot.  Then it's done and it's like nothing happened. I've also lost a little weight, and I don't have too much to lose (poor nutrient absorption seems like a possibility with this as well).

I haven't had any biopsies etc. to find if there is a localized problem area.  I'm hoping to manage it with diet and not make a big deal out of it with the doc, so that it doesn't impact my treatment schedule.

 

In my research of EoE I thought it mainly caused trouble swallowing and not bathroom related issues?

 

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3 minutes ago, MTSkiBum said:

 

In my research of EoE I thought it mainly caused trouble swallowing and not bathroom related issues?

 

I don't know about the esophagus but it can impact the rest of your GI tract including bathroom issues:

Quote

Eosinophilic Gastroenteritis

NORD gratefully acknowledges Adriaan Tan, MD, Hepatogastroenterologist, Canisius Wilhelmina Hospital, The Netherlands, for assistance in the preparation of this report.

Synonyms of Eosinophilic Gastroenteritis

  • EG
  • EGE
  • EGID
  • eosinophilic gastritis
  • eosinophilic gastroenteropathy
  • eosinophilic gastrointestinal disorders

General Discussion

Eosinophilic gastroenteritis is a rare digestive disease characterized by the triad of eosinophilic infiltration of segments of the gastrointestinal tract, abnormalities of gastrointestinal function (varying from dyspepsia and obstruction to diarrhea and ascites) and exclusion of other diseases with peripheral eosinophilia. Eosinophilic esophagitis is increasingly being recognized and is not included in this report.

Signs & Symptoms

Eosinophilic gastroenteritis may affect any part of the gastrointestinal tract from the esophagus to the rectum. Symptoms include dysphagia (sometimes presenting as food impaction), heartburn, abdominal pain, nausea, vomiting, diarrhea, weight loss, and bloating (ascites is possible). The eosinophilic infiltration may involve one or more layers of the gastrointestinal wall. The particular symptoms present in each person depend upon the layer and the location of involvement. Most commonly, the stomach wall and the small bowel are involved. Mucosal involvement leads to protein-losing enteropathy and malabsorption. Muscle layer involvement causes abdominal pain, vomiting, dyspeptic symptoms and bowel obstruction. Subserosal involvement predominantly causes ascites with marked eosinophilia. Sometimes eosinophilic pleural effusion is present. Eosinophilic gastroenteritis is a chronic, waxing and waning condition.

Causes

The exact cause of eosinophilic gastroenteritis is unknown. Some cases of this disease may be caused by a hypersensitivity to certain foods or other unknown allergens. Often, a family history of allergy is present. Atopy (asthma, hay fever or eczema) is present in a subset of patients. Food allergies are common.

https://rarediseases.org/rare-diseases/eosinophilic-gastroenteritis/

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5 minutes ago, jerryskids said:

I don't know about the esophagus but it can impact the rest of your GI tract including bathroom issues:

https://rarediseases.org/rare-diseases/eosinophilic-gastroenteritis/

 

Ah, we are talking about two different issues both of which have a high eosinophil count. That is where the confusion lies.

 

https://medlineplus.gov/eosinophilicesophagitis.html#:~:text=Eosinophilic esophagitis (EoE) is a,build up in your esophagus.

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