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#193208 10-13-2016 10:49 PM
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Just identified cancer on my gums m quite worried and still waiting for final reports that's why don't know the stage but observed change 2 months back.can any one please help me.


Vishwambhar

SCC,Left mandibles
Stage:T2N2M0
Mandibulectomy on 17/10/2016
radical neck dissection
Cisplatin/5FU -3 cycles
35 radiation completed on Jan 2017
Vishwambhar #193209 10-14-2016 05:46 AM
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 10,507
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Welcome to OCF! Im very sorry you have a need for our services after receiving an oral cancer diagnosis. Our group is made up of patients and caregivers from all over the world. We may not always know how different countries medical systems operate but we do understand what you are dealing with and can help with info and support. I suggest start reading posts here and also read info from the main OCF site. This will help you learn about your disease and make you a stronger advocate for yourself.

For starters you may want to begin focusing on your intake. Treatments for oral cancer can significantly affect a persons ability to eat, taste and swallow. This is usually a temporary change but it can take months for you to return to your pre-cancer abilities (or close to it). Your intake is of the utmost importance! Its something you have control over so start getting used to taking in at least 2500 calories every single day and 48-64 oz of water. If you are on the slim side, try taking in even more to help add a few pounds prior to any treatments.

You should also get a full blood workup done including thyroid (and testosterone for men). Its important you have a baseline set of numbers before you start any treatments as its not possible to know what your numbers normally are after being treated if having radiation with or without chemo.

Anyone who offers their assistance, tell them when the time comes you will let them know what they can do to help. Make sure to write everyones name down and contact info for later in case you need someone else to give them a call or text. There are many small things you could need help with during and after rads. Over the years working on the forum, Ive seen most people genuinely want to help but many dont know what they can do so dont be shy if you need help... ask.

Best wishes with everything!


OCF main site --- diagnosis

OCF Main --- Treatments



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
Vishwambhar #193212 10-15-2016 03:55 AM
Joined: Oct 2016
Posts: 15
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Posts: 15
Got reports of CT scan and biopsy identified 19x12 mm cancer Tumour on left mandible and is soft squamous cell carcinoma at initial phase and rest body parts are not infected including lymphs . Doctor has suggested for surgery and later radio and told is 100 % curable.please suggested are we going on right direction.


Vishwambhar

SCC,Left mandibles
Stage:T2N2M0
Mandibulectomy on 17/10/2016
radical neck dissection
Cisplatin/5FU -3 cycles
35 radiation completed on Jan 2017
Vishwambhar #193213 10-15-2016 04:30 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 10,507
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As I mentioned in my previous post, we are a group pf patients and caregivers. Please remember we do not have your medical history in front of us, medical training or text book experience. Our knowledge comes from living thru oral cancer (OC) diagnosis, treatments and recovery experiencing everything first hand.

In the US our physicians adhere to the NCCN flow chart to aid them in their treatment plans. I do not know what is done in other countries. What you described for your treatment plan sounds like what many of us here have been thru. Please take some time to read some valuable info with both the link below and the links in my previous post above.

Ive also sent you a private message (PM). click on the tiny flashing envelope next to the My Stuff tab. There an important link there to review too. Please use the link to follow the directions about adding a signature. It really is important in helping us to help you.


NCCN treatment plans for head and neck cancers

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
Vishwambhar #193217 10-15-2016 03:40 PM
Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
We are glad you found this site to help you on this journey. Christine has sent you very good, important information. Please read and study the information in the links as it will help you so much. We have all been through a journey and come here to learn and to help each other. Please do not hesitate to ask any questions here as likely someone will be able to talk with you about it. Take care and please keep us updated as to how you are doing.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Vishwambhar #193442 11-30-2016 05:13 AM
Joined: Oct 2016
Posts: 15
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Posts: 15
Surgery done on 17 oct 2016 (Mandibulectomy) left mandibles.2 cycles of chemo cisplatin & 5-FU. first radiation on 6 Dec is planned. Quite confused about radiation technique, Cobalt 60 or linear accelarator which one to use.In my current hospital cobalt 60 is available and my oncologist told there is not much more difference between two.Please suggest.


Vishwambhar

SCC,Left mandibles
Stage:T2N2M0
Mandibulectomy on 17/10/2016
radical neck dissection
Cisplatin/5FU -3 cycles
35 radiation completed on Jan 2017
Vishwambhar #193444 11-30-2016 07:31 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Please understand we are a group of patients and caregivers without medical backgrounds. We also are based in the US but do have members from all over the world. Im sorry but I do not know how the medical system works in countries outside of the US.

In first post to you, I included a link for Treatments. There you can read all about radiation and the different types. There are links within the tabs to give you even more detailed information. Here is the US most radiation is IRMRT, some Proton and even fewer brachytherapy (seed implant radiation). Im sorry, I do not know what Cobalt 60 or linear accelerator are.


PS... I sent you a private message back in October with links to review. Please check your messages and follow the directions in the links to add your signature as soon as possible. We need your basic background of your history to be best able to help you. Thank you!


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
Vishwambhar #193457 12-01-2016 07:33 AM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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From what I understand, Cobalt 60 is a type of Gammaknife, which is really stereostatic radiosurgery, and is not really surgery, but a precise form of radiation with minimal effect on surrounding tissue, which was largely used on brain tumors. Gammaknife, Cyberknife are trademarked names.

Linear accelerators, most commonly used, are state of the art radiation machines, such as IMRT, IGRT, VMAT, IORT, Stereostatic Radiosurgery, that deliver customized high doses of x-rays to tumors in all areas, while sparing normal tissue.

http://oralcancerfoundation.org/facts/imrt-radiation/


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Vishwambhar #193694 01-04-2017 10:29 PM
Joined: Oct 2016
Posts: 15
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Joined: Oct 2016
Posts: 15
Completed 3 cycles of chemo cisplatin and 5 FU ,now under radiation and completed 20 out of 30 rads.Feeding tube placed,lots of coughing and thickened saliva ,lost weight,sleepless.Almost all hairs are lost and few left turns white,feeling fatigue.Please advice what to feed also suffering from common cold.


Vishwambhar

SCC,Left mandibles
Stage:T2N2M0
Mandibulectomy on 17/10/2016
radical neck dissection
Cisplatin/5FU -3 cycles
35 radiation completed on Jan 2017
Vishwambhar #193698 01-05-2017 08:14 AM
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
The hair loss is probably from the chemo (as far as I know, Cisplatin does not cause major hair loss, so it may be the 5 FU). All the other side effects you have listed are fairly common effects of radiation. You might want to look at rinsing your mouth several times a day to get rid of the thickened saliva. My husband used a Waterpik on its lowest setting and with some of the prescribed mouthwash. It worked exceedingly well for him.

Are you eating by mouth or are you using your feeding tube? If you are using the feeding tube your medical team should recommend the appropriate supplement for you. Here in North America there are a lot of choices. My husband was on Ensure and some people use Boost. If there is a dietitian at your hospital, it would help for you to speak to this person. Your calorie intake each day should be about 2500 to 3000.

ChristineB, the forum administrator, always recommends that patients keep themselves hydrated. Indeed, she is right. If you are dehydrated (and radiation does that to you), you will feel awful. Make sure your water intake is close to 48 oz a day. You can find out from your treatment centre if they will give you intravenous hydration if you are really dehydrated.

The effects of radiation will continue for several weeks even after the end of treatment. So, it is important that you continue to keep up the fluid and calorie intake.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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