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Joined: Feb 2016
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My mother has stage 4 oral cancer. She was recently diagnosed with a tumor on the front side of her tongue. Surgery was recommend as the best option.

She is very frail and opted not to have the surgery or chemo or radiation. She is currently dealing with her pain with Advil. She has a prescription for Oxicoton but is worried about taking it. She has a good appetite and Is eating soft foods.

I am looking for the resources to learn how this cancer will spread and gain as much information as possible to help her stay comfortable. I know that at some point she will need to move to Pallative care.

Please provide any resources or point me in the right direction. Many Thanks

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Welcome to OCF, Merm. Im so sorry to read of your mothers illness and the route she has taken. It must have been very difficult for her making this decision. Im sure this is has been very hard on everyone in your family.

The main OCF website has page after page of info to read thru. You should find some info there to help you.

The Oral Cancer Foundation main site

There are also a couple threads on here on the message boards. Please remember everyone is different and will respond in their own unique way. What happens with one patient may not be what you see your mother experience. I know there is at least one thread where the member explained in great detail everything their family member went thru. Im sorry but I couldnt find it. Try reading thru some of the posts on either the Blogs or Left Behind sections. It was posted a while back, at least a year ago.

Best wishes with everything!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Thank You very much!

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Dear Mermaid,

If you mother has opted for no treatment, you may want to considering linking her up with a palliative care team. Contrary to the popular thinking, palliative care aims to provide comfort to the patient and they just don't treat patients aggressively. They will, however, do what they can to keep the patient in comfort. When my husband was in palliative care, he had a nurse visit him once a week, he was given the appropriate pain medication (hydromorphone made him delirious, so he was given a very small dose of morphine 1/16 of a teaspoon to start), he was given antibiotics for his pneumonia as well. In addition, a personal support worker came three times a week to bathe him and to change the linens. So, don't wait too long to get your mom the comfort that she's hoping to have by leaving her worried about pain at this stage.


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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Thank you very much!

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Sorry that you are both going through this, Merm. If you are in the US, and your mom is on medicare, one option is the hospice benefit which will provide some caregiver visits and equipment such as hospital beds at home. This option is available if a doctor will certify that the individual has less than 6 monthes to live, and the paperwork is filled out. This may be a long ways down the road for your mom - but I would urge you to try for the benefit as soon as possible: most people wait to long to get the full benefit of it. My dad spent 2 months under hospice when he had congestive heart failure, and the hospice personnel made them good months insofar as possible.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Thank You!


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