| Joined: Nov 2014 Posts: 66 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 66 | I've been gargling with salt water and baking soda, will do more. I wasn't mixing the two together.
I have the honey but don' know how to use it. I've been putting it in tea. is there another way?
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps Went to Oncologist (TNBC) Ultrasound 2 CT Scans - body/head and neck Needle & core biopsy Pet Scan Biopsy to find primary w/ anesthesia - failed Second Opinion found primary & biopsied Biopsy confirmed HPV+ P16 Squamous cell carcinoma Radical Neck Dissection 11/22/2014 32 lymph nodes removed - 3 positive Ported 12/29/14 Chemo and rads to start January 5, 2015 cisplatin weekly 40 mg/m2 Rads M-F for 7 weeks
| | | | Joined: Nov 2014 Posts: 66 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 66 | I did send an email to the Radiation Oncologist and he said that this is normal for this stage. When I gargle it seems to bled quite a bit more. I look in my throat with a flashlight and can see that it's quite bloody plus lots of bloody phlegm balls come up. I have pain but not taking anything for it, I have some pills but was waiting til it got bad enough.
I guess I am just worrying.
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps Went to Oncologist (TNBC) Ultrasound 2 CT Scans - body/head and neck Needle & core biopsy Pet Scan Biopsy to find primary w/ anesthesia - failed Second Opinion found primary & biopsied Biopsy confirmed HPV+ P16 Squamous cell carcinoma Radical Neck Dissection 11/22/2014 32 lymph nodes removed - 3 positive Ported 12/29/14 Chemo and rads to start January 5, 2015 cisplatin weekly 40 mg/m2 Rads M-F for 7 weeks
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Great that your RO emailed back to reassure you. Don't let the pain get on top of you. There's nothing wrong with pain relief during this treatment so please don't let yourself suffer it.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Nov 2014 Posts: 66 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 66 | I started with the oxy last night. It helped. The RO offered me the patch you all were talking about but I want to wait a bit. I really like to take a long shower and I read you can't with those. I do a lot of therapy in the shower, exercises and self massage.
Any suggestion for food that's not dairy? So much dairy to keep my weight up.
Still haven't been able to find out how to use the honey.
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps Went to Oncologist (TNBC) Ultrasound 2 CT Scans - body/head and neck Needle & core biopsy Pet Scan Biopsy to find primary w/ anesthesia - failed Second Opinion found primary & biopsied Biopsy confirmed HPV+ P16 Squamous cell carcinoma Radical Neck Dissection 11/22/2014 32 lymph nodes removed - 3 positive Ported 12/29/14 Chemo and rads to start January 5, 2015 cisplatin weekly 40 mg/m2 Rads M-F for 7 weeks
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | QueenKong
My mother used the Munica Honey. It helped with healing after her surgery as well as sores in her mouth from treatment.
Rub the honey all over the surgery area and rub it on your lips and inside your mouth. Its kind of sticky but it does promote fast healing from the mouth sores and softens the skin around the surgery area.
It must be pure Manuca Honey.
Good Luck Heidi
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | Joined: Nov 2014 Posts: 66 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 66 | Thanks Heidi, I tried using it in my throat. That is were it hurts so much because of the radiation. It eases the pain for a short time. Maybe it's helping heal. I hope so. I've got 20 more treatments left. Plus it's calories. How's your mom doing? I see from your signature that she is back in treatments.
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps Went to Oncologist (TNBC) Ultrasound 2 CT Scans - body/head and neck Needle & core biopsy Pet Scan Biopsy to find primary w/ anesthesia - failed Second Opinion found primary & biopsied Biopsy confirmed HPV+ P16 Squamous cell carcinoma Radical Neck Dissection 11/22/2014 32 lymph nodes removed - 3 positive Ported 12/29/14 Chemo and rads to start January 5, 2015 cisplatin weekly 40 mg/m2 Rads M-F for 7 weeks
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Manuka - Okay - yes you can use it on open sores, and on your lips.
SO here is how to use it in your mouth (Therapeutically) Take a tablespoon of it. Place it in your mouth, let it melt and swish for around a minute and a half to two. Then swallow. ;o)
it burns like a B*tch. But it also soothes after that, and most importantly - it's healing.
When it gets too painful to take it straight up, I used to melt it in a small (baby cup) of warm water - about a mouthful so it's still strong, then do the same... rinse for 2 minutes and swallow.
Also the baking soda/salt, this mixture you can't swallow, but if you get club soda and flatten it, it does the same thing as the baking soda mixture and you can swallow it.
hugs and keep on trucking.
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: Nov 2014 Posts: 66 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 66 | Thank you Cheryld. I am trucking along. I've been doing the honey as you say and it does seem to be helping along with lots of gargling with salt and soda. I've had some trouble with blood clots, pretty gross. Trying to move beyond the pain and eat as much as I can. Everything is not tasting good and finding it hard to cook for my family when I don't like anything that I am cooking. I think I am going to have to get one of those blenders, I looked at ingredients in the boosts I've been drinking. so gross.
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps Went to Oncologist (TNBC) Ultrasound 2 CT Scans - body/head and neck Needle & core biopsy Pet Scan Biopsy to find primary w/ anesthesia - failed Second Opinion found primary & biopsied Biopsy confirmed HPV+ P16 Squamous cell carcinoma Radical Neck Dissection 11/22/2014 32 lymph nodes removed - 3 positive Ported 12/29/14 Chemo and rads to start January 5, 2015 cisplatin weekly 40 mg/m2 Rads M-F for 7 weeks
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | I hear you in the boost. I couldn't wait to get off of them and make my own protein shakes - pick up a waterpik if you can - the deluxe model has a tongue scraper - using this end on the lowest setting with Luke warm water will clean out the gunk in your mouth. Sorry about thw food taste - it happens to all of us. Not fun but it does get better eventually - 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: Sep 2014 Posts: 87 Likes: 2 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2014 Posts: 87 Likes: 2 | Yeah, if you don't already have a blender, that is something I'd highly recommend you pick up. I used mine several times a day to make milkshakes and smoothies. I also own a juicer, but if I could go back now, I'd spend the $$$$ on the Vitamix and not buy the juicer, so I would only need one appliance for both juices and milkshakes/smoothies plus whatever else you can make in those things. If you don't want pulp in your juices (closer to those made with a proper slow juicer), you can always strain it out. The high fat, high dairy diet was bugging me too, but it's tough to get enough calories without it. I made sure that I increased my protein intake (mostly with protein powder) and drank my veggie/fruit juices to try to balance things out a bit. Try just taking a day or two off the Boost and milkshakes, and make some higher calorie smoothies with a bunch of frozen and fresh fruit, some water and/or juice, protein powder and whatever else you have that you might want to throw in there. At points I had trouble with things like chia seeds. After a day or two away from the constant dairy, I could go back to the creamy stuff and it would be tolerable or even enjoyable again. There might be a few ideas you haven't thought of in this old thread, which might not show up on the forum list depending on your settings. Once I could eat more than liquid, I was really craving carbs, so I was eating pasta (the smaller pieces, of course), soups with small noodles in them, pancakes, cream of wheat, etc. Rice took a little longer for me because they're slippery little buggers that slid over the hump of my new tongue and made me choke. Be careful and go slow. I know it can be irritating to have to take 45 minutes or an hour to eat a meal. Sometimes by the time you finish eating, it's time to start eating again. 
Dx 2014Jan29 (42 yr old otherwise fit nonsmoker) SCC tongue stage III T3N0M0 subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital RAD 25 zaps 2014May5-2014Jun9 Back to work, paddling & hiking shortly afterwards
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