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Joined: Sep 2013
Posts: 105
"OCF Canuck"
Senior Member (100+ posts)
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"OCF Canuck"
Senior Member (100+ posts)

Joined: Sep 2013
Posts: 105
Types of cancer? I have a friend who just opened up about his wife having cancer and wanting questions answered. I offered mine and my husband's support but I am not certaine what kind of cancer she is diagnosed with as we were at a public gathering and the conversation was short. I told him I would send him this link. But I would love to send him links for other types of cancer support as well.

I have looked online and the other sites I found were very general in information and posted mostly stories instead of more interactive question answers posts. This site is the best for oral cancer and was a guiding light in a very terrifying part of our process. Are there any suggestions for other cancer sites out there? Please send them all along!

Thank you so much all of you, ps my husband is three years post surgery this October! He is doing well, though he does have some pain from the tightening of the radiation on his neck, he doesn't complain but I can tell when he is in pain because he is in bed with the heating pad which does wonders by the way.

Sophie


husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Sophie, I was hoping someone here had experience with another site to help other types of cancer patients. The only one I know of is something the American Cancer Society runs. I havent heard the best user reviews so I cant attest to it having a wide variety of Q & A or support like we do here. There's only one OCF and its members are the heart behind what makes it such a wonderful helpful and caring place.

Best wishes to you and your husband with his 3 year milestone smile



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
Joined: May 2006
Posts: 720
Likes: 1
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: May 2006
Posts: 720
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Since you don't know what type of cancer it is, you could direct your friend and his wife to Inspire, which has a number of communities on different types of cancer.

I've frequented that site for the last year, since my husband was diagnosed with a relatively rare lung disease. Some of the posters in my little area of the site are like those here — asking relevant questions, giving relevant answers, offering support as needed from a been-there-done-that-here's-what-worked-for-me perspective. Others take the name of the site more "seriously," writing intensely personal stories containing platitudes that, frankly, I don't find particularly helpful or inspirational (though I understand that others might). Unfortunately, it's the only site for his disease that has regular activity, based on frequency of postings -- there are other sites, such as Patients Like Me, but they appear to have a smaller patient/caregiver group and as a result have fewer postings.

I was spoiled when I stumbled upon OCF 10 (!) years ago and posted a ton of questions about what turned out to be a very, very early stage of SCC on my husband's tongue — and got the help, support and information that I needed. This is a special community, and I agree with Sophie's and Christine's assessment that there is no place like it.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
Joined: Sep 2013
Posts: 105
"OCF Canuck"
Senior Member (100+ posts)
OP Offline
"OCF Canuck"
Senior Member (100+ posts)

Joined: Sep 2013
Posts: 105
Hello again Christine and hello Leslie,

First thank you for always being there, that is what makes this place so unbelievably amazing! I will pass the information along. Coming here is like coming back to a sort of home. I really do feel love and support.

Off to teaching art, health and social studies!

Sophie


husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Inspire Cancer Network, Blog For A Cure


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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