Mayo Clinic Connect
Would like to hear from People who are dealing with stomach cancer
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.
Liked by Teresa, Volunteer Mentor
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.
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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