Just diagnosed with esophageal cancer

Posted by kathykrenz @kathykrenz, Mar 16 7:49am

I am new to this group and I need some help because I have a lack of knowledge. My husband was diagnosed with Esophageal cancer approx. 2 weeks ago. His primary doctor got him within the Mayo Clinic in Rochester team of doctors. His appointments (tests) do not begin until March 28,2024 for 2 days of numerous tests. He seems to be daily getting worse. At first he could eat soft foods, now that is to difficult. He is still eating popsicles (1-2 a day), hates Ensure. I bought those mini cans of regular soda (he loves soda), it is very difficult to put anything in his system. I bought baby food (thought that would help to go down), he hasn't really tried it (I think it is physiological). I thought he was dehydrated because of seeming so lethargic. He went to clinic and they said he was not dehydrated (great), I would be happy to be wrong. I am just really afraid of the time (today is March 16th), to the beginning of the tests, waiting to see what can be done. Mayo Clinic advised this is the soonest they can get him in. I believe them but have fear of the time it takes. Is there something I can do in the interim? Should I be afraid? Please help me. I don't know who to ask, who can help me. I don't want to discuss this with people that come into our office or my shop because I don't want to have them writing him off without giving him a chance. He has also lost 22 lbs. in the past 2 weeks. thank you to anyone who can help me, I really appreciate your help, your advice, your comments. "thank you".

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@red77465

His PCP needs to get him a ref to a GI specialist to have an endoscopy done ASAP. My husband had the same issues. Dating back to Thanksgiving 2023 he could not hold anything solid down, it would come back up. 11/28/23 he say his PCP, 12/13/23 referral sent to GI, 1/26/24 endoscopy done as well as biopsy, 1/31/24 3 CT scans of abdomen, pelvic, and chest and an ambulance ride to dallas and a 10 day stay in the hospital due to malnutrition. He lost 40 lbs. He has been diagnosed with stage 4 esophageal cancer. Don't let anyone write him off, push to get him a referral. The sooner the better.

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Oh my gosh poor him poor you. I hope he is doing better today then thanksgiving and Christmas. Larry is now getting fluids daily until we leave for Mayo next week. He has had the endoscopy and a biopsy and a CT scan. The tests at Mayo are for 2 days straight from one test to the next. Seeing a doctor in-between. I just want next Thursday to get here and begin with what needs to happen. The positive with tests so far is nothing in any other organ. At least when they processed the first tests. I appreciate your kindness in your comment. I really hope you are doing well in your family. How is he doing today??

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@kathykrenz

Oh my gosh poor him poor you. I hope he is doing better today then thanksgiving and Christmas. Larry is now getting fluids daily until we leave for Mayo next week. He has had the endoscopy and a biopsy and a CT scan. The tests at Mayo are for 2 days straight from one test to the next. Seeing a doctor in-between. I just want next Thursday to get here and begin with what needs to happen. The positive with tests so far is nothing in any other organ. At least when they processed the first tests. I appreciate your kindness in your comment. I really hope you are doing well in your family. How is he doing today??

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Kathy,
It appears you've made good progress. You will feel well-supported at Mayo. We did.
Dave

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@kathykrenz

Oh my gosh poor him poor you. I hope he is doing better today then thanksgiving and Christmas. Larry is now getting fluids daily until we leave for Mayo next week. He has had the endoscopy and a biopsy and a CT scan. The tests at Mayo are for 2 days straight from one test to the next. Seeing a doctor in-between. I just want next Thursday to get here and begin with what needs to happen. The positive with tests so far is nothing in any other organ. At least when they processed the first tests. I appreciate your kindness in your comment. I really hope you are doing well in your family. How is he doing today??

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Hi. He is doing well today. He was in ICU for 3 days last week, 5 bags of blood for a transfusion, severe sepsis, and severley low potassium. Spent 2 days on the oncology floor then released home. He was dehydrated so I do hope Larry keeps up with his hydration, it's so important. My husband has to have at least 1100 Ml a day of water to meet his hydration goal. We are both 45 years old, and it is so scary and sad how this cancer has made my husband look like a 90 year old man in his figure. I just hate cancer so much. He developed a pressure knot in his lower back and omg it was so big, my poor husband was hurting so much, thankfully it was gone in 3 days. Is Larry doing Immunotherapy as well? My husband is doing 48 hours chemo bi weekly, Immunotherapy, and iron infusions. His Oncologist said he won't have Chemo tomorrow since he just got out of hospital, he doesn't want to jepordize his numbers. Do you know how many treatments Larry has to have? Jons oncologist just said as many as it takes for that question from us.

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@red77465

Hi. He is doing well today. He was in ICU for 3 days last week, 5 bags of blood for a transfusion, severe sepsis, and severley low potassium. Spent 2 days on the oncology floor then released home. He was dehydrated so I do hope Larry keeps up with his hydration, it's so important. My husband has to have at least 1100 Ml a day of water to meet his hydration goal. We are both 45 years old, and it is so scary and sad how this cancer has made my husband look like a 90 year old man in his figure. I just hate cancer so much. He developed a pressure knot in his lower back and omg it was so big, my poor husband was hurting so much, thankfully it was gone in 3 days. Is Larry doing Immunotherapy as well? My husband is doing 48 hours chemo bi weekly, Immunotherapy, and iron infusions. His Oncologist said he won't have Chemo tomorrow since he just got out of hospital, he doesn't want to jepordize his numbers. Do you know how many treatments Larry has to have? Jons oncologist just said as many as it takes for that question from us.

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You know so much more than I do. We begin the actual journey at Mayo next Thursday. First appointment is a consultation. I don't even know what that entails. His primary doctor has been taking care of him here and he is the one who scheduled the daily fluids now till we get to Rochester. I am ignorant of all of this. We own 2 real estate offices and Larry is an auctioneer. We have a live auction scheduled and I know he won't be able to do it. So today I contacted a person who always works with us he is also Larry's friend. He helped me to attain 3 auctioneers for this sale. They said they will help me with whatever I need. Amazing what they are willing to do. They own their own auction houses so it really means a lot they are so willing to help. As far as real estate my son is going to get his classes in for his brokers license. Our renters may be surprised by the fact I may to take rentals over. Larry is a very kind lenient landlord. I am not. He feels so bad for renters when they give him their story...lol...yeah sorry and the rent is umm I think due. Anyway right now I am really trying to take care of business so that worry is off my shoulders. He is a Vietnam vet and I am also working with the VA. I guess this has to do with being sprayed with agent orange.. sorry for going on but I really am so ignorant on what he needs for life. I am just thankful for the fluids he is getting now and I will have to learn as much as you know. How do I tell certain things. Like how will I know when a transfusion is needed. I know business but I am so far from medical knowledge. I will learn. I am learning from everyone here. So thank you for everything you have said.

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@kathykrenz

You know so much more than I do. We begin the actual journey at Mayo next Thursday. First appointment is a consultation. I don't even know what that entails. His primary doctor has been taking care of him here and he is the one who scheduled the daily fluids now till we get to Rochester. I am ignorant of all of this. We own 2 real estate offices and Larry is an auctioneer. We have a live auction scheduled and I know he won't be able to do it. So today I contacted a person who always works with us he is also Larry's friend. He helped me to attain 3 auctioneers for this sale. They said they will help me with whatever I need. Amazing what they are willing to do. They own their own auction houses so it really means a lot they are so willing to help. As far as real estate my son is going to get his classes in for his brokers license. Our renters may be surprised by the fact I may to take rentals over. Larry is a very kind lenient landlord. I am not. He feels so bad for renters when they give him their story...lol...yeah sorry and the rent is umm I think due. Anyway right now I am really trying to take care of business so that worry is off my shoulders. He is a Vietnam vet and I am also working with the VA. I guess this has to do with being sprayed with agent orange.. sorry for going on but I really am so ignorant on what he needs for life. I am just thankful for the fluids he is getting now and I will have to learn as much as you know. How do I tell certain things. Like how will I know when a transfusion is needed. I know business but I am so far from medical knowledge. I will learn. I am learning from everyone here. So thank you for everything you have said.

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So consultation is really just to go over his stage, and his treatment plan options. Ex: My husbands tumor is the size of my fist, and the plan is to shrink it, then operate to remove it, then have a resection of the esophagus and possibly lift the colon, then radiation months down the road to kill any remaining cancer cells, and have his feeding tube removed at some point when he can swallow. As to what to look for, well if he ever has extreme pain associated with nausea or vomiting always seek medical help it's usually a bad sign. If he has a feeding tube placed he must never lay flat or he can aspirate in his lungs from the fluid. Bolus feeding is really done manually by a 60 Ml syringe, and continuous feeding is with a programmed pump that runs nonstop. I hate the feeding tube, but I'm thankful for it. Novilumb is Immunotherapy AKA Keytruda and it was approved by the FDA in 2022 which makes me nervous, but I'm confident in his Oncologist. He'll have labwork done regular, and it's important to keep protien levels up to help with cramping. Iron needs to stay above 7.9 because if his iron levels drop below that he is severly anemic. My husbands cancer has spread to his stomach so he gets Ascities which is greenish fluid around his stomach and has had to have a paracentisis ( draining ) done every Friday so far for the last month. Each time they drain his fluid they have gotten 4.6 liters. I log into my husbands MyChart and read the Dr's clinical notes but at times I wish I hadn't seen some of their notes. I'd say watch him for any changes. Any pain he may have take note of it, if his eyes become far away looking take note because my husband became incoherant due to malnutrition. His body was shutting down. It's gonna be a learning experience for sure. When my husband had brain cancer in 2009 it was NOTHING like this experience. This one has me worried. Good for your son! It is truly amazing the amount of good people in the world that are willing to help in these situations. You will see who your true friends really are too. I've had to learn some things from youtube too. If you have any questions and I can answer them please don't hesitate to ask. I'll do my best

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@red77465

So consultation is really just to go over his stage, and his treatment plan options. Ex: My husbands tumor is the size of my fist, and the plan is to shrink it, then operate to remove it, then have a resection of the esophagus and possibly lift the colon, then radiation months down the road to kill any remaining cancer cells, and have his feeding tube removed at some point when he can swallow. As to what to look for, well if he ever has extreme pain associated with nausea or vomiting always seek medical help it's usually a bad sign. If he has a feeding tube placed he must never lay flat or he can aspirate in his lungs from the fluid. Bolus feeding is really done manually by a 60 Ml syringe, and continuous feeding is with a programmed pump that runs nonstop. I hate the feeding tube, but I'm thankful for it. Novilumb is Immunotherapy AKA Keytruda and it was approved by the FDA in 2022 which makes me nervous, but I'm confident in his Oncologist. He'll have labwork done regular, and it's important to keep protien levels up to help with cramping. Iron needs to stay above 7.9 because if his iron levels drop below that he is severly anemic. My husbands cancer has spread to his stomach so he gets Ascities which is greenish fluid around his stomach and has had to have a paracentisis ( draining ) done every Friday so far for the last month. Each time they drain his fluid they have gotten 4.6 liters. I log into my husbands MyChart and read the Dr's clinical notes but at times I wish I hadn't seen some of their notes. I'd say watch him for any changes. Any pain he may have take note of it, if his eyes become far away looking take note because my husband became incoherant due to malnutrition. His body was shutting down. It's gonna be a learning experience for sure. When my husband had brain cancer in 2009 it was NOTHING like this experience. This one has me worried. Good for your son! It is truly amazing the amount of good people in the world that are willing to help in these situations. You will see who your true friends really are too. I've had to learn some things from youtube too. If you have any questions and I can answer them please don't hesitate to ask. I'll do my best

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I read and then reread all your information. I have no idea how you retained all this information. Right now you have to be going thru an extreme amount of stress. I know I will be asking you questions because reading your message it is so much to learn and you don't want to make mistakes. Thank you so much ahead of my questions. Thank you for all this and I truly wish you the best. I am so sorry you have to have all this knowledge and yet selfishly happy you do and that you are willing to share it. Talk to you soon. Probably after Rochester. Kathy

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@kathykrenz

I read and then reread all your information. I have no idea how you retained all this information. Right now you have to be going thru an extreme amount of stress. I know I will be asking you questions because reading your message it is so much to learn and you don't want to make mistakes. Thank you so much ahead of my questions. Thank you for all this and I truly wish you the best. I am so sorry you have to have all this knowledge and yet selfishly happy you do and that you are willing to share it. Talk to you soon. Probably after Rochester. Kathy

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I'm manifesting nothing but positivity for you and your hubby for his consultation!

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