Esophageal cancer metastasized and spreading quickly

Posted by angiegirl76 @angiegirl76, Feb 24, 2023

My husband was diagnosed with stage 4 cancer in September. He started chemo in October, along with immunotherapy. Was told there is no cure but chemo/immunotherapy will stop progression. Finished 1st course and now plan is for 2nd line of chemo/different immunotherapy one time per week for a month. He opted to do radiation therapy to target bone lesions. Has anyone been successful with a similar case? Considering seeing someone at mayo but it’s a long ways away and my FMLA is over. He’s had a feeding tube placed for nutrients, but not able to swallow. Was told surgery isn’t an option. He’s also now found out new masses appear in lymph nodes around the esophagus. Frustrating bc radiologist reported masses were gone after a month of treatments and then to find out they were not when stent was placed to try to open esophagus so back to feeding tube only. My husband is wasting away, and not doing well. He went from 220 pounds of muscle to 145 in just 6 months. He also has stomach cancer added, adrenal gland masses on both right and left, along with areas throughout the body. Is it recommended to seek an appointment with Mayo or should we be content with the 2nd round of chemo treatment? He is 51 years young and has worked so hard his whole life, being self employed contractor and has not worked due to fatigue and pain, since September. He’s bed bound all day, and it breaks my heart to see him suffer like this. Thank you for listening and sharing suggestions.

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@jwkelly72

What I still take( it's permanent) is Jevity 1.5 and everything I can put in it that will or might help with weight, inflammation and such. I'm Mr experimentation with shakes, formulas, juices and teas. Fortunately I have more good results then bad. Been surviving this plague for 2 yrs plus without chemo helping (God, Jesus and my G tube keep me alive)

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So am I correct that you expect to keep feeding tube permanently? Are you not expecting to be able to swallow normally eventually? I had mine removed once the tumor shrunk and I could swallow normally again. While I was using the tube I only used ISOSOURCE which is liquid with lots of calories etc. I do still have port which I understand many patients keep for years. I do hope and pray your condition improves.

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@dsh33782

So am I correct that you expect to keep feeding tube permanently? Are you not expecting to be able to swallow normally eventually? I had mine removed once the tumor shrunk and I could swallow normally again. While I was using the tube I only used ISOSOURCE which is liquid with lots of calories etc. I do still have port which I understand many patients keep for years. I do hope and pray your condition improves.

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I do expect it to be for life, I won't do surgery since I'm hemiplegic and can't physically have that type of surgery stress my body. I'm not doing hardcore poison like daxiltaxol and risk the side effects ( life threatening infections, permanent nerve numbing, damage and such.) I have no problem with a feeding tube life: it saved my life, may never be 180 pounds ever again but I'm no longer 95 or 105( 125 plus and holding) so I'll take that. I'm 50 and am just going to enjoy quality of life until God takes me home. Thank you for your kindness.

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@jwkelly72

I do expect it to be for life, I won't do surgery since I'm hemiplegic and can't physically have that type of surgery stress my body. I'm not doing hardcore poison like daxiltaxol and risk the side effects ( life threatening infections, permanent nerve numbing, damage and such.) I have no problem with a feeding tube life: it saved my life, may never be 180 pounds ever again but I'm no longer 95 or 105( 125 plus and holding) so I'll take that. I'm 50 and am just going to enjoy quality of life until God takes me home. Thank you for your kindness.

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I never had to have surgery. The radiation and chemo completely killed off the tumor in in esophagus so I could swallow normally again. I hope the same can be true for you. Have you had radiation and chemo treatments?

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Did chemo and immunotherapy for 6 months with no positive results. Radiation would be too much. Won't be weakend to the point where I can't live independent as a disabled person. Been wheelchair bound for 33 years and living by myself for 31 and won't end up in a nursing home. My regiments have kept me alive and increasing strength for 2 years of cancer, so I'll take a feeding tube life til I die. It's fast and gets the job done.

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Update: my husband completed the chemo, six weeks and radiation 28 days approximately three weeks ago. He struggled the last week of chemo and the first week of recovery with nausea and vomiting and not getting any tube feed because he couldn’t keep it down. He finally turned the corner, as the nausea and vomiting stopped. He started gaining a little weight back, getting up to seven Jevity 1.5 a day and we got a continuous to feed pump which has been a lifesaver. He is still very weak, but able to walk short distances. I can tell his whole affect, and even a smile coming back to his face. His pain has increased in his sternal area of his chest because I assume it’s from the tumor that has been radiated. We went to the cardiologist for a surgery clearance yesterday and had some bad news. He had never had heart problems before although his cholesterol was high. He never went to a cardiologist before. He did the treadmill test and it rest his ejection fraction ( amount of blood by percentage pumped out of the heart with each beat ( 50-70 normal range) Who is only 45 at rest. It dropped to 30 under stress of the treadmill for six minutes and his blood pressure went down instead of up which would be normal under stress. The doctor would only read the test because that’s all he was asked to do so he did not explain anything. However, we do have an appointment with him next week as a new patient to see what the possibilities are. we do not know if the chemo or radiation did its number on his heart but we have to trust that the Lord is going to take care of it. As a nurse, I know that no anesthesiologist would want to proceed with the surgery with this kind of heart damage. He still cannot swallow, and we still have tests like a pulmonary function test and PET scan. He hasn’t started immuno therapy yet because that was slated for after the surgery. Has anyone had anything like this happen? It stopped you from the plan that was in place and had to continue with a dead esophagus? That did tissue inside his esophagus hurts him. The pain radiates up into his face but it’s in waves. I think this is bringing his countenance back down again. The trials just keep getting a little deeper. Requesting prayer.

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Thinking of you and sending prayers in this most difficult of times.

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Sorry you are running into so many challenges... you will certainly be in our prayers.

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I'm 50 and have stage 3 b esophagus cancer, was misdiagnosed for 10 months as dysphagia only because of my TBI of 33 years. Went from 180-95 pounds before they got me proper treatment. I did chemo and immunotherapy for a month with good results then insurance issues derailed the immunotherapy. G tube saved me though. Surgery not an option. Chemo didn't shrink the tumor either. Not doing radiation if I can help it, not doing daxiltaxol chemotherapy either. Right now I'm doing home remedies, high protein, low sugar, high calorie and hydration plus herbal teas. My weight is past 130 as of 2 days ago. No fat on me but hydrated muscle. I certainly look like a cancer survivor but have more energy and strength. I'm trying to enjoy life and stay independent as a wheelchair bound person and I take it day by day and thank God and Jesus for their strength and love. Blessings and the best wishes to you and your husband. It's such a tough disease.

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I will pray for your complete healing and restoration in Jesus name. Our sister is stage 2 and we have been researching additional treatments along with her surgery and she found Root Wellness/clean slate products to be very helpful as well as selenium and Dr Li has some good food recommendations that have helped her to heal.

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@socalkelly

@davidwrenn what a stressful but enlightening story. I’m so glad you found the right “recipe” that is addressing both the cancer and your MS. Mental attitude means a lot in the battle!
@angiegirl76 yes seek out multiple options for your husband. And be sure as a caretaker, you’re caring for yourself. My husband was diagnosed in January 2022. He underwent the FOLFOX chemo regimen, and 30 rounds of radiation. He saw some shrinkage of the tumor and they did an esophagectomy in July 2022. In October he began immunotherapy with Keytruda. His scan in January 2023 showed more tumors in his lung and nodes. We’re waiting on a biopsy of the tumor to ensure we have the right chemo treatment plan. It’s a tough road and trying to stay active and positive makes all the difference. Hang in there and leverage this group. There is great support and resources of information!

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Thank you David. We just started this journey!! It give us a lot of hope!!

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