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Shariff #186279 10-30-2014 05:59 AM
Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Im very sorry to read further about your fathers situation. Please understand this site is not made up of medical professionals, we are fellow oral cancer survivors and caregivers. We do not have the knowledge or medical experience to second guess what the doctors are suggesting. From what I understand surgery is the only curative option. Chemo alone will not eliminate the cancer but could shrink it enough to make surgery an option a little later. Ask the docs if this is an option to do surgery after trying a few rounds of chemo. Im not aware of any medications that will control the cancer???

Best wishes!


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
Shariff #186286 10-30-2014 03:09 PM
Joined: Jan 2013
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I am very sorry to hear the reports of the latest visits. Since it has been just two months since chemoradiation therapy and the PET shows the original cancer has spread and a new cancer is discovered, this is a very aggressive cancer.

The doctors there are far better at assessing what the options are and if surgery has been ruled out and radiation too, then only chemo seems like an option.

I know you are totally involved and push for all that can be done to help your father. Hopefully they can at least control the spread and shrink it back some. If that shows good results there may be other options.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Shariff #186291 10-30-2014 08:16 PM
Joined: Dec 2010
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"OCF Canuck"
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That's crap they can remove it from both - once it moves out of the head and neck area that's different but they should operate !


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
Shariff #186293 10-30-2014 09:59 PM
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Posts: 1,024
"OCF Kiwi Down Under"
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I just want to tell you that my husband had both his tongue and voice box removed. This surgery is possible and quality of life is good. Keep pursuing this option.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Shariff #186300 10-31-2014 10:34 AM
Joined: Jan 2013
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Thanks for reporting in the option of surgery. I know the term "salvage" surgery which is done after traditional surgery and radiation, so yes it is possible.

Of course, we are not doctors here nor have any specifics to this or any case, so should pursue the best doctors and trust their recommendations, whatever they may be.

Surgery in one instance may offer great prognosis and QOL; in other situations, the outcomes can be very different.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Shariff #186304 10-31-2014 01:29 PM
Joined: Oct 2014
Posts: 5
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Thanks for all your comments and feedbacks. Really feel happy to see so many of you are caring here and i'm getting more confidence. I will fight till the end. There are few more updates after our visit yesterday.

Met the Chief doctor and he advised to provide Chemo via Tablets (2-0-2) for the next twenty days & asked to return on 20th Nov. Yes, surgery is an option if the chemo helps to shrink it and showing better results they might go for the surgery little later but not for now.(50-50 Chance for surgery)

However after returning home last night, We received our tablets in the noon today. My Father completed his Prayers, Lunch in noon and went to take some rest. After another one hour returned with bleeding in his mouth :'( told us that he had bleeding from his mouth like in clotted way and in lots, He had washed his mouth and showed us thereafter. We really got panicked and called our relatives close-by home. Spoke to doctor over the phone and he said it is okay and nothing to worry and asked to take the medicines for tonight and if case of bleeding asked to take another tablet to control. It did not bleed from the wound in his tongue, However Father feels like it may be from the tumour in his right jaw area. And after the bleeding he feel his pain on the right side has reduced to some extent. Tomorrow morning we are planning to take him to doctor to further diagnose it.

Has anyone of you had similar incidents like this before ?
Please clarify.


Father 62:Non-Smoker/Non Drinker/ Non- Veg/ Carcinoma Tongue / Biopsy 25 May'14 / Radiation+Chemo 25 June till 8 Aug'14 /Next Visit 5 Sept Consultation - Normal / 5 Oct'14 Consultation - Pain and recurrence of small tumour in neck / Re-radiation = NA /
Shariff #186315 11-01-2014 08:16 AM
Joined: Sep 2013
Posts: 105
"OCF Canuck"
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"OCF Canuck"
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Thinking of you and your father. Keep fighting and supporting your father Shariff.
Keep heart, 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
Shariff #186319 11-01-2014 09:15 AM
Joined: Oct 2014
Posts: 5
Shariff Offline OP
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Posts: 5
Hi, Since yesterday my Father had bleeding for 4 times. Doctor informed nothin to worry and asked to take a tablet in case bleeding. May I please know if anyone had similar situation and what was suggested to be done?

Please advise. Thanks alot.


Father 62:Non-Smoker/Non Drinker/ Non- Veg/ Carcinoma Tongue / Biopsy 25 May'14 / Radiation+Chemo 25 June till 8 Aug'14 /Next Visit 5 Sept Consultation - Normal / 5 Oct'14 Consultation - Pain and recurrence of small tumour in neck / Re-radiation = NA /
Shariff #186323 11-01-2014 10:27 AM
Joined: Jan 2013
Posts: 1,291
Likes: 1
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Sorry to hear about the continued issues. The bleeding is not reported much so not much advise to offer. Many have surgery treatments so I'm assuming the wounds are treated so they don't bleed much as I suspect if it was a concern it would be posted here.

What specific medications and chemo is he prescribed? Giving chemo orally is unusual in USA as it is almost always administered via IV bag.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Shariff #186328 11-01-2014 02:21 PM
Joined: Sep 2013
Posts: 105
"OCF Canuck"
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Posts: 105
Hi Shariff, sorry not to be of more help: bellow is a list of how to care for a bleeding mouth. I just copied this info from a medical site. Sophie

Bleeding in the mouth is generally caused by mouth sores, gum (periodontal) disease, or by a low platelet count (cells that help the blood clot). Low platelet counts can be a side effect of chemo or radiation treatment. This is usually a short-term problem (if the platelet count is low, see the section called �Blood counts�). Cancers that affect the blood-forming system, such as leukemia, can also cause a drop in platelets. A person with low platelet levels might bleed easily. Everyday actions such as brushing or flossing teeth can cause bleeding. Side effects of chemo or radiation can include dryness in the mouth or small mouth ulcers, which can bleed.

What to look for

Blood or bruises in mouth (from or on the gums, tongue, etc.)
Rash or bright red pinpoint-sized dots on tongue, under tongue, on roof of mouth, and/or on inside of cheeks
Blood oozing from mouth
What the patient can do

Rinse your mouth gently with ice water every 2 hours.
Suck on ice chips (avoid hard candies if your mouth is bleeding).
Rinse your mouth or brush your teeth with a soft toothbrush after eating. Rinse the toothbrush in warm water to soften the bristles even more.
Use soft foam mouth swabs or gauze wrapped around a Popsicle stick or tongue depressor to clean teeth if a soft toothbrush causes bleeding.
Avoid store-bought mouthwash. See the section called �Mouth dryness� to learn how to make a gentle mouth rinse.
Eat foods that are soft, smooth, and high in calories and protein. Refrigerated soft foods, such as ice cream, applesauce, puddings, and yogurt, are helpful because cold helps to control bleeding.
Puree hard foods, such as apples, pears, etc., in the blender.
Avoid hot drinks, such as coffee and tea. Heat enlarges blood vessels and can make bleeding worse.
Put cream or salve on lips to prevent dryness.
If you wear dentures, keep them out of your mouth, especially if they do not fit well.
Avoid aspirin products. Check labels of over-the-counter drugs to be sure they don�t contain aspirin, or check with your pharmacist.
What caregivers can do

Offer the patient cold water mouth rinses before each meal. Keep ice water nearby.
If the mouth is oozing blood, keep a bowl nearby for spitting out mouth rinses.
Make milkshakes or smoothies in the blender, and offer other soft frozen treats.
Avoid nuts, caramel, sharp or crunchy foods (such as chips or crackers) and foods with hard coatings.
Freeze a few wet tea bags, and have the patient press one on any bleeding area.
Call the doctor if the patient:
Is bleeding from the mouth for the first time
Has bleeding that lasts for more than a half-hour
Vomits blood or material that looks like coffee grounds
Feels light-headed or dizzy


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
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