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#199417 11-12-2019 05:00 PM
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My mom was just recently diagnosed with Stage IVA oral cancer. She has decided to pursue palliative options and today her case was opened up with hospice.
My dad is her main caregiver as my brother and I are about an hour away. He is burnt out, but wont admit it. He feels guilty like he should have been the one (my mom has negative risk factors for this cancer) but he smoked. Im not sure how to support him with not being there on a day to day basis. He keeps saying that I don't know what he is going through. Any advice/thoughts is appreciated.

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my husband was diagnosed 18 months ago with stage 4a. they said they don't treat stage 4c. is there other reasons for not pursuing treatment? you would never know that he had cancer. it was bitter going through treatment but you would not ever know he had stage 4a back of the tongue cancer.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
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My husband finished radiation and chemo, got an NED and then eight months later, told that the cancer had metastasized to o e of lungs. At that point, the RO said there was nothing he could do. My husband was accepted into one of the earliest immunotherapy trials (stage 1, meaning the test drug had only been used on monkeys prior). He was on immunotherapy for six months, it did not help him. His MO found another Stage 2 trial for him and he was on it for a while but they had to stop because it was very harsh in him. He was then on “maintenance chemo” for a couple of months, until he passed away from aspiration pneumonia.

It’s the patient’s choice really. If one doesn’t want to give Ip, there are trials to get into. But there are no guarantees. There are people who don’t want to drag it on and they choose having nothing done. The beet really is to talk frankly with your mom to find out what her wishes are and to consult your medical team to see if anything else is available.

I hope this helps.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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A hour isn't that far at all. I drive 45 minutes to work every day. Make a plan to go have dinner with him once a week. Bring him dinner and clean up afterwards. It will make a world of difference knowing that you're coming and that he can talk to you (or maybe not talk, but just be around someone who he doesn't have to explain stuff to). It's lonely, exhausting and stressful being a caregiver, and grieving the life you had before. Just sitting and eating might be what he needs. My mom is my dad's caregiver. Before he had cancer, she had a heart attack and triple bypass. She's the glue of our family. She makes him dinner every night. She makes him coffee every morning. They watch the news together. He was lost without her, and I came home from college to help him while she was recovering.


Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
8.6.20 Clear CT!
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Posts: 330
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as a caregiver who kept it pretty quiet in my actual life, I will say (someone warned me about this) that your life does get pretty small. your tribes of friends get small. I only had adult children around who didn't want to help me or their dad...early 20s...still young and wanting to be independent. You can't get away from the cancer nor the treatments, it is your life when you are the caretaker. I was fortunate to have a group of 5 women and this board to carry me along through the whole process. your dad does need a support system. My friends couldn't fix it, no one offered meals or anything else. I did have some co workers give me some money. But my friends could go out for a cup of coffee and just listen to where my life was at. your dad needs that outlet or the process will drive him crazy.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free

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