OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | The pain is constant, and I feel bloated all the time. Glad to know that leakage is common. I will not worry so much about it. I will try to make peace with this new annoyance, but right now I can not even sleep, so I ain't making peace with anything or anyone. LOL As far as supplies, I have one syrings that the hospital gave me and that is all. I had go buy gauze pads and tape so that I would have them on hand. I have not seen a dietitian at all about this because the one my RO uses is not in my network and has not given me the time of day as soon as she realized she was not in network for my insurance. I had heard that I have been referred out to someone. Have no idea who it is. I know i will see my gastro Dr. on Tuesday to get some answers.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
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