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plantgirl #149289 05-08-2012 03:26 PM
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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Please go to a cancer center for a second opinion. I cant stress this enough! I have not heard of either one of these chemos being effective with oral cancer. That does not mean they wont work, just I havent heard of them. For oral cancer, chemo is normally used for palliative care not used alone as a cure. Here is detailed info about it from the main OCF pages. Please take the time to read this important info, it could make a huge difference in your choice of treatment.

Palliative Care from main OCF pages

If it were me, I would run as fast as possible to the best NCI cancer center I could get to.

OC resources including NCI CCC list

Best wishes with everything!!!!


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
plantgirl #149294 05-08-2012 03:55 PM
Joined: Nov 2010
Posts: 74
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Joined: Nov 2010
Posts: 74
I cant have any more radiation to my left side. My cancer is very aggresive and probably will come back again. I am trying to get a 2nd opinion at Duke next week. A big big part of my decision is financial. I just do not have anything left from my savings and Ive used up all my FMLA I actually went over by 3 weeks and I was so lucky my employer hired me back. If I dont have insurance I wont be able to get any treatments and I will lose my house if I dont have a job. it really sucks that its all about money but that is how it is.


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
plantgirl #149296 05-08-2012 04:29 PM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Plantgirl

From your signature line, it appears you have about 40 IMRT treatments. I'm guessing up to about 70-77 GY. Which is why radiologists not familiar with the latest studies keep telling OCF members about having the "maximum" and no more radiation can be done. Except that it's not always true. I had 40 radiation treatments entirely on my left side and 72 GY. When the cancer came back, my ENT pushed the radiologist who then used CyberKnife to give me yet another whopping 25 GY, this time 5GY at a shot for a week to nuke the cells that survived the salvage surgery. He admitted that I was the first one he had done this for, but it's been almost 3 years and I do not glow in the dark. Seriously, ask your doctors about CyberKnife or the other focused variants.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #149298 05-08-2012 04:43 PM
Joined: Nov 2010
Posts: 74
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Posts: 74
Thanks Charm I will. Im actually seeing my rad doc on Monday.


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
plantgirl #149303 05-08-2012 05:41 PM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Posts: 10,507
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The financial aspect of battling a serious disease is a terrible decision to make. I am very sorry to hear about your situation. Please check out the above links. There may be places for you to get some help. The American Cancer Society will give cancer patients help of up to $300 towards medications or travel. They even have volunteer drives (I am one) who can drive you to treatments, just call and sign up. Check out local churches and organizations, there could be some programs you may qualify for. I wish you all the very best with everything you are facing.

I do know of several patients who have done rads more than once. Its not an easy road but every one of them is currently doing ok. I think they have all been given a smaller dose of rads the second time around.

Good luck with everything!!!


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
plantgirl #149397 05-10-2012 10:01 PM
Joined: May 2012
Posts: 6
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Joined: May 2012
Posts: 6
So sorry to hear this. Will keep you in my thoughts and will be cheering you on. You can do this. You've got to do this. Be strong and when you get weary, that's where the troops here come in.

Do you have a good support team with you? I hope so.

ritabrenke #149413 05-11-2012 08:33 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Ditto what Rita said.. Though I've responded before! smile


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
Cheryld #149545 05-14-2012 04:01 PM
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Posts: 74
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I saw my Radiation Dr today. He is one doctor who has always been up front and honest about my cancer and treatments. He told me that radiation would probably do me more harm than good right now. My cancer is going to keep coming back. I asked him to give me a straight answer on how much time I have. His answer was 6 months to a year. He also said he hates to tell patients that because you never know. I am trying to come to grips with this. I know shouldnt give up hope and I am still getting a 2nd opinion from an oncologist not affiliated with this hospital on Thursday.I also had some tests done today for the clinical trial EKG another CT and blood work. I will most likely be starting that chemo next week.


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
plantgirl #149553 05-14-2012 04:45 PM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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Posts: 5,260
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Place don't give up! He does not know what will happen. He can only give you an educated guess. Definitely get a second opinion, what you have at this point is sounds like it is NOT terminal - don't let it become that way. Chemo may hold it at bay but isn't considered a cure!

I have a friend who has a rare cancer - peritoneal - it was stage four - this cancer there is no cure for it, she went through treatment at a local hospital and went into remission it came back ithin 2 mos. second time out she had a reaction to the chemo, they switched her to an old one, the tumor grew and spread. Her dr. Said go home, you have maybe 6 mos. use your pain pills you'll need them. I told her to switch from our local hospital to the top center in Canada (an extra 20 minutes away) they put her on another chemo, and a trial drug, as of a month ago, there was a 27% shrinkage in her tumor.

They do not know ! 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
Cheryld #149554 05-14-2012 04:55 PM
Joined: Nov 2010
Posts: 74
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Joined: Nov 2010
Posts: 74
Thanks Cheryl. I am going to Duke on Thursday.Where Ive been treated (UNC)has a very respected cancer program so I feel like Ive been treated well up till this point. I am not ready to die just yet and I will not give up.


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
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