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| | Joined: Sep 2014 Posts: 8 Member | OP  Member
Joined: Sep 2014 Posts: 8 | I was recently informed that I have a fairly rare form of cancer and would greatly appreciate any feed back and or knowledge about nasopharyngeal carcinoma.Thanks so much!!!
06 / 14 Started to feel a lump in the back of my throat
08/28/14 ENT discovered tumor
09/03/14 CT scan
09/11/14 removal of tumor
09/13/14 biopsy == cancer ?? stage 1
09/17/14 masked formed / waiting
09/25/14 Diagnosis = Nasopharyngeal Carcinoma stage 2
10/02/14 picc line to be inserted
09/31/14 meant with OS = 4 teeth to be removed B-4 radiation treatments
10/7/14 3 front teeth pulled and 1 back
10/10/14 flipper made,( I still have teeth ) sorta !!
10/20/14 started chemo and radiation 6 weeks of both
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi - welcome. I think there are a few if you here and a facebook group. 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
| | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Mar 2014 Posts: 286 | Wow. September 2014 probably a month you wont forget in a hurry Greg? Sounds like you are getting the works. I'll defer to the nasopharyngeal people for their experiences, but most of us can help with other things we have in common like diet and experiences with meds. Best wishes for a smooth treatment and full recovery.
Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | | Joined: May 2014 Posts: 2 "OCF Down Under" Member | | "OCF Down Under" Member
Joined: May 2014 Posts: 2 | Hi Greg,
My husband has nasopharyngeal carcinoma and has just had last chemo after starting treatment in April. It is a rare cancer if you are outside Asia. I have found a good group on Facebook called Nasopharyngeal Cancer Awareness and also there are a number of people with this condition on the Head and Neck Cancer group on Inspire.com.
The treatment and side effects are similar to others with oral cancers that you will find discussed on this site.
I have a lot more info but you will also find a lot of first hand accounts from others with this exact disease on those sites.
Husband diagnosed 24/3/14 stage 2/3 Type1 Nasopharyngeal carcinoma
35 radiations plus 3 rounds cisplatin (200mg each time) finished 11 June14
Surgical removal 4 wisdom teeth scheduled 10 Jul 14.
3 rounds of chemo - carboplatin/5FU started August and finished Sept 14
Clear PET/CT scan on 8 Sept 14 - NED
| | | | | Joined: Sep 2014 Posts: 8 Member | | OP Member
Joined: Sep 2014 Posts: 8 | Thanks Sharhoop for the website info and will look inter them !! Congrats to hubby for the all clear pet!!!
06 / 14 Started to feel a lump in the back of my throat
08/28/14 ENT discovered tumor
09/03/14 CT scan
09/11/14 removal of tumor
09/13/14 biopsy == cancer ?? stage 1
09/17/14 masked formed / waiting
09/25/14 Diagnosis = Nasopharyngeal Carcinoma stage 2
10/02/14 picc line to be inserted
09/31/14 meant with OS = 4 teeth to be removed B-4 radiation treatments
10/7/14 3 front teeth pulled and 1 back
10/10/14 flipper made,( I still have teeth ) sorta !!
10/20/14 started chemo and radiation 6 weeks of both
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