Would like to hear from People who are dealing with stomach cancer

Posted by Volker (Joe) @volkerjoe, May 19, 2012

Would like to hear from People who are dealing with stomach cancer

Interested in more discussions like this? Go to the Cancer Support Group.

My husband was just diagnosed. It has spread to his liver. He will not do chemo.

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@ssimons

My husband was just diagnosed. It has spread to his liver. He will not do chemo.

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My husband had a kidney transplant in 2012 (with our brother in law’s kidney). In 2014, he had a spot on top of head which turned out to be Squamous Cell Carcinoma (spindle). It grew out of control despite numerous Mohs surgeries. In 2015, Mayo J’ville did a scalp resection and graft on top of his head. More surgeries, radiations followed. In summer of 2016, they took him off immunosuppressants for the kidney. The drugs were allowing the cancer to flourish. We knew it would only be a matter of time before he lost the kidney – he said he wouldn’t go on dialysis. In March, over a two week period, he lost the kidney. We went through training for home hemo dialysis and now we do it 4 times a week.

Concurrent with this he was having radiation for tumors in his neck. The radiation completely destroyed his saliva glands. He said he wouldn’t get a feeding tube. He tried to eat, he really tried. In June, at 116 pounds, he relented and got the tube. Now we have a “snack” 4 times a day.

My husband has also had two different chemos (carboplatin and Erbitux) and now a targeted immunotherapy (Keytruda). Carboplatin had a little nausea and fatigue. Erbitux attacks fast growing cells – cancer cells + normal fast growing cells – like fingertips, so there was cracking of his fingers and toes. He was working full time while taking this. The immunotherapy (Keytruda) helps his normal immune system fight the cancer. Cancer cells put up a “screen” to hide their dirty work. Keytruda removes that screen so the immune system “sees” it and fights it. Fatigue has been the major problem.

I suggest you find out the specific chemo or alternatives the doctor has in mind and do your research, then present your findings to your husband. There are many, many kinds of chemo with different side effects.

Your husband may be different, but when finally facing the grim reality that he would certainly die soon, my husband has done things that he adamantly opposed.

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@ssimons

My husband was just diagnosed. It has spread to his liver. He will not do chemo.

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@gaybinator

Your husband’s story of persistence and willingness to change is quite amazing. He is a good role model for others, I can also see that he has a good advocate in you.

Teresa

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Welcome to Connect, @ssimons.
Deciding not to have chemo, or any treatment, is a tough decision for everyone. My uncle decided not to have treatment for his stomach cancer. That was over 10 years ago. My father went to see the oncologist when he was diagnosed with colon cancer for the second time with his mind made up not to have chemo again. After considering all the options, he decided to try knowing that he could stop at any time. After 2 rounds he decided to stop chemo. Quality of life was more important to him at that stage than managing the side effects he was experiencing. I share these stories only to say that everyone is different. People often say, it is an individual choice. While that may be true, I know first-hand that the patient’s choice has an impact on everyone around them too.

I think you might find it helpful to read this conversation on Connect in the caregivers group, where others are sharing about their loved one decided against treatment.
– Husband refusing dialysis https://connect.mayoclinic.org/discussion/husband-refusing-dialysis/

SSimons, how do you feel about your husband’s decision?

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My sister in law had stomach cancer surgery a month ago today. 1/4 of her stomach was removed. She’s had so many problems. Been in and out of the hospitals numerous times. It wasn’t done at Mayo, at a small Alabama hospital. She’s had nothing but problems. As it turned out, the surgeon put the stitches in too tight and another procedure was done unsuccessfully to try and open them up more. In the end, she had to have the entire surgery redone and is still in the hospital. Has had constant nausea, throwing up bile, can’t have a bowel movement. Her bowels are having a hard time waking up. Any suggestions? I feel so sorry for her.

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@destinnana

My sister in law had stomach cancer surgery a month ago today. 1/4 of her stomach was removed. She’s had so many problems. Been in and out of the hospitals numerous times. It wasn’t done at Mayo, at a small Alabama hospital. She’s had nothing but problems. As it turned out, the surgeon put the stitches in too tight and another procedure was done unsuccessfully to try and open them up more. In the end, she had to have the entire surgery redone and is still in the hospital. Has had constant nausea, throwing up bile, can’t have a bowel movement. Her bowels are having a hard time waking up. Any suggestions? I feel so sorry for her.

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Hello @destinnana

I just now saw your March 27 post. I'm sorry for the delay in responding.

I feel so badly for your sister's situation. This sounds so difficult! She must be very discouraged. My only thought is to see if she can be transferred to a multi-disciplinary hospital, such as a university medical center or a Mayo facility. Probably the closest Mayo Clinic would be in Jacksonville, Florida.

Is a transfer to a different hospital a possibility for her?

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@destinnana

My sister in law had stomach cancer surgery a month ago today. 1/4 of her stomach was removed. She’s had so many problems. Been in and out of the hospitals numerous times. It wasn’t done at Mayo, at a small Alabama hospital. She’s had nothing but problems. As it turned out, the surgeon put the stitches in too tight and another procedure was done unsuccessfully to try and open them up more. In the end, she had to have the entire surgery redone and is still in the hospital. Has had constant nausea, throwing up bile, can’t have a bowel movement. Her bowels are having a hard time waking up. Any suggestions? I feel so sorry for her.

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Hello @destinnana, As you posted earlier this year regarding your sister's problems post-stomach surgery, I was just wondering about her. I hope she is doing better now.

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