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| Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Great news. Got an invite from Steve's hospital the other day. They are trying to form a support group for patients and their families who have head and neck cancer. Yahoo. I've searched high and low to find a support group specific to what we deal with and over a distance of approx 200km haven't found one yet. Or even found one listed within Australia. This is a service so badly needed. I know there were about 61 patients (read this in a report) with head and neck cancers attending our hospital at the same time Steve was having treatment but not once did we meet them. As far as I know also, they are not on this site. I often have wondered how other people cope. So there's a meeting set to take place on the 31st of March. You better believe it, I will be there  About time Australia came out of the dark ages in regards to this disease.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started. 17/03/22 lost the battle. Missed dearly
| | | | Joined: Dec 2009 Posts: 108 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2009 Posts: 108 | That is great news. More support is needed for Head and Neck cancer patients and their caregivers. Here at Shands Jacksonville there is a support group for H&N that meets every Thursday am. We haven't been able to attend because of all of Carol's appointments, but I'm trying to set up the time for this next Thursday. Carol met one guy during the Chemo class and have seen him briefly for rad treatments but haven't struck up any conversation to treatments. He's in and out in a flash. LOL The Drs admit that H&N is under researched in Florida according to a report on their website. I believe Carol would appreciate the group knowing she isn't the only H&N patient and that others are going through the same thing as she is. She is getting curious about the patients coming and going for rad treatments. She doesn't have the nerve to ask as she believes it's a private matter. We do know though the gentlemen being treated there are mostly prostate cancer patients....because of the routine they need to go through before being radiated and they are using proton therapy.
CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009 Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap ypT4aN0 HG Mucoepidermoid carcinoma 2nd Recur 1/18/11 - Tumor lower left lip Surgery 2/9/11 - Canceled - Inoperable 3/29/11 - Died
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | WEndy, se if you can get in touch with Lyn Challands. I bet she would like the support group.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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