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Joined: Dec 2010
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"OCF Canuck"
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"OCF Canuck"
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It appears you have a very resistant tumor. Surgery is a good option and they may want to follow it up with more radiation. You should request to have tissue from the area biospied and then tested against different chemos as this is a very effective way of finding out what treatment works best for you. It is good it hasn't spread. But hopefully surgery will take care of most of it. ASAP is the primary term here push to have it taken care of NOW. hugs and best of luck.


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
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Sorry for the news. Chemo and radiation resistance is thought to be caused by many factors like field cancerization, cancer repolulation, angiogeneses, anemia, hypoxia, drug resistance, genes, and is a concern with my recurrences, which prior treatments were ineffective. I don't know what clinical trial they are speaking of, but maybe should be different that what was already given, and more of a targeted therapy. I had HD-IORT, high dose rate Intraoperative radiation therapy, which is similar to Brachytherapy, and can be used for recurrences in previously irridated tissue in the oropharynx, mouth, elsewhere, and radiation, after resection, possibly flap, is radiation directly on or in the tumor, in addition too, additional EBRT after surgery, with a targeted drug, in my case, and or chemo. This is an aggressive treatment, and done only in a few places. There are chemo or targeted therapies that are injected directly into the tumor during surgety, but I did not have this done. Good luck with everything.


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






Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
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Nocam,
I am deeply sorry for you and the news that you received. It seems like there are a lot of veterans on this site that have some viable suggestions. I really don't know what else to say. I hope that you and your team can come up with a treatment plan that will save your life as you are willing to accept it as a new normal. I wouldn't want to have to make the decisions that you are facing. Just take some comfort in knowing that there are people here who have been there and done that...not a good choice, I know.

I am with you every step of the way, as I'm sure we all are.

Please try to do things that will help you relax and laugh a little as you wait for these plans and decisions to be made.

With great care,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Jun 2007
Posts: 10,502
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Administrator, Director of Patient Support Services
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Im very very sorry to read the radiation did not help eliminate the cancer. This is indeed a very unusual situation. I would suggest to go to one of the countries top cancer centers. This would be the best chance for a successful treatment of this resistant cancer. At a major comprehensive cancer center they will have the countries top doctors who are the most experienced in difficult cases. They will use a team based approach to this. This may be your only option to being cured, please look into other centers if not for treatment then at least for a second opinion. The top 4 centers in the US are MD Anderson, Johns Hopkins, Sloan-Kettering and Moffitt (in no special order). Ive had recurrences myself and know how disheartening this news can be. You seem to be handling this very well and know the importance of selecting the proper treatment facility.

Wishing you all the very best with the difficult decisions you are facing.

Cancer Centers


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
Joined: Jul 2012
Posts: 61
nocam Offline OP
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Kelly

You said:

"I feel bad as I was the one who recommended you give this a shot. I donít know what to say about that other than I am sorry if I have caused you any undo pain or discomfort."

PLEASE don't feel bad for one moment! Finding OCF and you has been a gift that has given me knowledge, strength and courage I would have never had if not for you and this site. After reading about all your travels and what you have endured I became optomistic about what might be avaliable for me and I choose to follow in your path. Even though some of the best gave you little hope for the future you perservered and found hope and it is paying off. It seems as though, in a way, that what is happening for you is some kind of miracle and it is so encouraging to know that miracles can happen.

I never really understood your condition but it seemed much worse than my own so I felt confident that a cure for me would be quite simple. Unfortunately, so far, things have not worked out as I wished but I have not given up. I feel stronger because I know I at least tried and I have not given up trying just yet. I am lucky things have not gotten a lot worse and it seems I may have a LITTLE time to look at other options and I will. I am confident that there is a better option out there but I just don't know what it is or where to look. At the moment I am waiting for Dr. Heron to see the results in hopes of his having some positive suggestions. I received an email from him yesterday, at midnight, and at that point he had not received anything. I am also trying to find out where there might be a clearing house of positive clinical trials taking place, maybe such info is in a data base, that might pertain specifically to what my problem is.

PLEASE don't feel bad for one moment! The information you and others have given has all been helpful. 3 for 3 is not possible at the moment but 2 for 3 still is and that is real good.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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"OCF Kiwi Down Under"
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Posts: 1,024
Nocam,
Please consider salvage surgery. This has a curative intent.
Would a clinical trial offer you curative intent as a stand alone treatment? I doubt it.
There are a few of us on here who have had to go down the salvage surgery path. Did we want to ? Hell no. But Honestly there is still good quality of life to be had and it is far preferable to the other option.
Life can still be good.Don't discount it. Please consider it.
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!
Joined: Jul 2012
Posts: 3,267
Patient Advocate (old timer, 2000 posts)
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You can go NCI at cancer.gov and check thier database or clinical trials.gov. PubMed.health to check results from clinical trials, treatments. Go to various cancer center's web pages, and see what clinical trials are open, and what different treatment options they offer. Most clinical trials are for no prior treatments or other exclusions, but they do have for recurrent or metatastic head and neck cancer, oropharyngeal, solid tumors.


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






Joined: Sep 2009
Posts: 618
"Above & Beyond" Member (500+ posts)
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Joined: Sep 2009
Posts: 618
Nocam,

Thank you so much for the kind words. I think one of the great benefits of this site is the ability to talk with others who have been in our shoes. I very much remember getting the news you just received. Although my results showed the radiation to be partially successful I still had residual disease. In a word, I was "Crushed". But I found a way forward and am still here to talk about it. I am comforted in the knowledge that you still have a curative path open to you.

Best of Luck my friend.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Jul 2012
Posts: 61
nocam Offline OP
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Posts: 61
Tamvock

Thanks for your thoughts which parallel what my ENT doctor told me last week. I keep hoping for some last minute miracle to take place but I am convinced that is not going to happen, I am waiting for the Dr. at Univ. of Pitt to read the pet and give me his thoughts but have accepted the fact that he is going to suggest what others are saying which is get surgery. I am now hoping I can savemy tongue and larynx as I was told I could at Sloan in Sept (hope nothing has changed) instead of losing both as I was told should happen by a doctor here in Atlanta. At the moment my tongue is swellingand speech is becoming difficult, wonder if this is just temp from radiation, and I am requiring Rocsiset every 4-5 hours. Hate trying to sleep, not swallowing any liquids and fearful of aspiration.

How is your husband doing? How does he communicate?

If I have to be cut I am hoping I can have it done at Sloan for they are in the groupof best but not sureI can make it happen with my insu. I hate to deal with second best. I think I have already done some of that.

Charm

I guess I am special and the tumor just does not want to shrink and go away. I am waiting for you to be at least 2 out of 3 that Kelly referanced since I cannot join as 3 for 3. No need for Kelly to have all the fun. Join him with positive results.

CherylD

Interested idea to have the biopsy tested aginst different chemo. Maybe that is whay a local MO is looking into.I will try to ask when I see her next.

PaulB

That is a lot of good information. Whaere are those few places where the things you mentioned are done? What have you had done and how are you doing now? I have looked at NCI but I get lost in trying to understand all the treatments
terminology. Maybe I can find someone to help decipher it all.
Kerri

Thanks a lot again. Your words are very conforting.

ChristineB

Above I mentioned Sloan where I have been for a second opinion. I hope that can be the place where I can get the best.

Kelly

Dr. Heron is a moments hope. Maybe he can give me some direction soon. I hope it is soon for I need to make a quick decision.


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jul 2012
Posts: 61
nocam Offline OP
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Joined: Jul 2012
Posts: 61
Has anyone here had "positive closure" done or know anything about it vs a flap beingdone? I posted directly to braziliangirl
on page 9 (she had this method) but she has not been around for a while to possibly answer.

This was proposed to me at Sloan Kettering as whatthey would do. Now that I know surgery is what is MOST likely to happen this appeals to me more than a flap.One major curiosity is speach recovery and aspiration possibilities being reduced.

Thanks


2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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