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#182867 06-27-2014 01:07 PM
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She was diagnosed with SCC on 6/2/14 and doc said it was inoperable and will likely need chemo/rad. She's going in for MRI today, had PET-CT yesterday. She was just getting ready to have a second dental implant before this happened. Info on OCF site warns about having bad teeth removed before rad (good advice). She has no caregiver at home; I live 100 miles away. Trying to figure out what kind of in-home assistance she will need and for how long during/after the chemo/rad tx. Thank you.


just being a friend to ex-wife diagnosed 6/3/14
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Do yo have any details on the location of the cancer??? Welcome... Btw..


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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BOT. She has been complaining of pain on swallowing for months. Just finished reading a bunch of posts re feeding tubes. Sounds like she will need almost 24 hour care since she lives alone (with dog). Thank you for response.


just being a friend to ex-wife diagnosed 6/3/14
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Welcome to OCF! Im very glad you have found this forum to help you with info and support so you can help your x-wife. Seems like you are already absorbing some info. Yes, she will need lots of help. OC treatments can be brutal for many patients.

I suggest if possible, going to a major comprehensive cancer center (CCC) and seeking the best medical care you can. Below is a list of CCC's. They are the countries top hospitals to treat cancer and you should get the most up to date treatment available. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and also get a second opinion.

CCC list

US News Best Hospitals List

She will want to line up helpers. With living 100 miles away, you will have more than you can handle with trying to help your x. She needs to speak up and begin to talk to friends and relatives in her immediate area. Anyone who offers their assistance, she should tell them that later when she needs a hand she will let them know what they can do to help. Take down their name and number and begin the list. She will have a tough job handling everything by herself, even the dog can become alot to manage when at the end of treatments. Being a caregiver isnt easy. But dont worry, we are here to help you both get thru this.

Best wishes!!!


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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Christine is right about being treated at a top cancer center. HPV SCC is treatable and usually responds well - but delays in treatment and other issues can make it harder. Going somewhere where they do this kind of cancer all the time will put her in touch with the best treatments and best support system (pain management etc) as for a feeding tube I would say likely. The treatment is effective but brutal. Hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hi Chris - welcome to the family. We have a lot of caregivers here as members and they all play a very important role in the life of someone else. It's admirable that you are trying to help your ex-wife, many wouldn't be able to do that.

Is she the type person to have a lot of friends, especially the ones who live in the same city as her. If so, and she is willing to ask them for help her road will be a lot smoother through treatment. If on the other hand, she is new to the city and doesn't know anyone yet, it will be harder and more of the burden will fall on your shoulders.

Like others have asked I'm also curious as to why her cancer is inoperable. I'm sure there is some form of treatment she is a candidate for.

Keep us informed, better yet get her to join the forum herself. It's great when caregivers get involved with learning about the disease and treatment, but it will be even better for her if she learns it herself.

take care
Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Has her cancer cells been tested for HPV?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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There are about 29 American Cancer Society Hope Lodges throughout the country, mostly near a CCC, where the patient, and an adult caregiver can stay for free during treatment. A patient can stay alone, and would need a doctors note that they are able to care for themselves. ACS also have volunteer drivers, and one can temporarily sign up for para transit for locations that have it, as most cities are required if they have public transit.

Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Everyone, thank you for the very helpful comments and recommendations on drivers, support facilities, etc. My ex-wife is mostly solitary due to her inability to sleep at night. She sleeps mostly during daytime. She's a smoker (two packs a day for the last 47 years) and drinker, and due to severe back pain she's taking narcotics every day since January 2000. Depression and anxiety are part of the history. So, not many friends. She's never learned computers and finds the smart phone perplexing. I doubt that she'll try to get onto this forum, but you never know. I'm accompanying her to follow up with ENT doc on Monday, where he will hopefully refer us to oncologists now that PET and MRI are done. Do not know if +HPV. Starting an up and down journey and hoping for the best.


just being a friend to ex-wife diagnosed 6/3/14
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It sounds like you will have your hands full. I hope she appreciates what you are doing to help her.

Please encourage her to stop smoking immediately. No sense in making this any harder than it has to be. If she continues to smoke or use tobacco products then a recurrence is likely. Im hoping she will be positive and realize she must quit for her own survival.

In my previous post on this thread I gave a list of top cancer centers. Please start making some calls to see where she can get in to get this taken care of.

Best wishes!!!


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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