| Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Nimorazole is basically an antimicobial, to treat cettain infections, and is not a chemo, it was used as a radiosensitizer in the study. Also, for small T1 or T2 tumors, surgery or radiation is often done alone, wether HPV postive or negative, and some doctors feel it's unnecessary to give chemo or even chemoradiation if surgery is done, and is often the preferred method. There is a radomozed study with radiation with and without Cetuximad ( Erbitux), which is a monoclonal antibody, in patients who had surgery for locallly advanced Head and Neck cancer. One of the secondary objectives, is to anyalze HPV in subset of oropharyngeal patients, and to perform exploratory anyalsis of the impact of HPV in DFS and OS. A patient's condition, also factors in if chemo will be given with radiation, even with being HPV positive. I was never tested for HPV in 2009, and most likly it is being a non-smoker, casual drinker, at 48, and my oncologist would not give me chemo with radiation in 2010 after a recurrence,due to my body, not being able to handle it, saying it would kill me. There is more talks about treatment de-esculation being HPV positive with less radiation, less chemo, being it is so responsive. These are just some examples that chemo therapy is not always given with radiation, including with HPV positive patients. Future studies, and long term results will prove it's effacy.
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: Jan 2013 Posts: 5 Member | Member Joined: Jan 2013 Posts: 5 | Received same direction from UCSF's Helen Diller Cancer Center; I am 24 months out from Stage lV, HPV 16, chance of recurrence low single digit at this point. BTW Newbie, congrats; this is my first post :-) I will remember you always!!!!!
UCSF radiation and surgery, lV SCC T2N3 HPV+ tonsil, diagnosed 09/2010
| | | | Joined: Jan 2013 Posts: 5 Member | Member Joined: Jan 2013 Posts: 5 | What do you mean expressly by "one shot to cure this"? Sorry to be naive Paul but this frightened me some; chemo was never an option offered and I didn't know to inquire/insist. Sounds dumb I know, but there you have it.
UCSF radiation and surgery, lV SCC T2N3 HPV+ tonsil, diagnosed 09/2010
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | "You have one shot at curing this, and should give it your best" is a generalized statement, factual, and meant to alert, that after your initial treatment with surgery, chemo and radiation or whatever treatment combination you have, if there is a recurrence, it is more difficult to treat the 2nd time around for many reasons, and sometime it may not be treatable, but each cancer is different, so is the location, involvement, TNM staging, initial treatment, the patient, age, health, as well as the doctor's experience, and many other factors, that are taken into consideration, so it's not directed at any individual, and no one has a crystal ball, not even the doctors, but that everyone should consider all treatment options offered, and available to them, sometimes even at another institution, and to put your heart into it like your life depended in it! Most CCC consider the guidelines by the NCCN, have up-to-date treatments, top doctors, training, but everywhere else, I'm not too sure, and each patient is a co-contributor to his or her own health care, not just the doctors.
There are many here who have had more than one recurrences, and were treated successfully, including myself 5x. If I could go back, would I change some aspects, yes, but I did not have this or any other sight to go to to see what others have done, and suggest. I just post to try to help others with my experience or lack of experience, mistakes I made, and share information I gathered for the past three years, and I've been to hell and back.
Anyway, if chemo was not offered to you, your doctors probably felt it was not necessary, and treatable with Surgery and Radiation alone, which is the only thing that cures HNSCC. I see you went to UCSF, which has one of the best ENT programs in the country, and can be assured you received the best care. You are two years out of treatment, and most recurrences occur within the first year.
In hope this answers your question, be well.
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | paul said it all very well. i'd like add just about everyone who knows cancers has clearly stated to me, "be aggressive". Meaning the goal is to kill it first time around with as many options that can help, even if the entire treatment regime makes you wish you were dead.
Treating recurrences are often complicated by prior treatment so options are more limited than treating a "virgin" cancer patient.
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 | | | | Joined: Dec 2012 Posts: 38 "OCF Down Under" Contributing Member (25+ posts) | "OCF Down Under" Contributing Member (25+ posts) Joined: Dec 2012 Posts: 38 | Hi! I also had the same as you, my oncologist said my tumor was extremely small and no spread so the risks of chemo outweighed the benefits. But in saying that I'm sitting here waiting on biopsy results of some abnormal thickening on my tongue but could also be due to the radiation.... So time will tell! Good luck on your journey, I'm only new here myself but have found it to be such a great site with extremely helpful people all on this roller coaster.
Female 34. Non smoker, casual drinker Dx July 12 stage 1 scc to left tonsil n0 m0. Hpv + 16 . 7 weeks daily rads finished sept 2012. 3 mth scan - low activity in primary spot hopefly t's just inflam. 2013 Abnormal tissue next base of tongue, came back negative. 5 month scan all clear!!!!! Yayy | | | | Joined: Dec 2012 Posts: 38 "OCF Down Under" Contributing Member (25+ posts) | "OCF Down Under" Contributing Member (25+ posts) Joined: Dec 2012 Posts: 38 | Oh and i checked out those links and they are a great resource thanks Paul!
Female 34. Non smoker, casual drinker Dx July 12 stage 1 scc to left tonsil n0 m0. Hpv + 16 . 7 weeks daily rads finished sept 2012. 3 mth scan - low activity in primary spot hopefly t's just inflam. 2013 Abnormal tissue next base of tongue, came back negative. 5 month scan all clear!!!!! Yayy | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | While Paul did dial back his "one shot to cure this" story,and he made very good points and gave excellent advice on treatment, it does not change the fact that it's just an "old oncologist's tale". It's often repeated because it used to be true, but it's not true anymore. Literally, it is not true but a falsehood in the 21st Century. It's not "generally" true or any other kind of true for oral cancer. Yes, it's good to be aggressive. Yes it is better to do more rather than less in order to not have a recurrence. But not because recurrences are fatal. But I do not see how it helps to repeat scary stories that are not true. There are plenty of reasons to do whatever it takes, but false fears should not be one of them IMO. I've seen too many posters here all worried because their out of date radiologists have told them they could never have any more radiation or chemo after the first time. Charm
Last edited by Charm2017; 01-23-2013 07:49 AM. Reason: toned it down
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
| | | | 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 | Realistically speaking... does anyone out there want to face this again? Taking a minimalists approach to treatment has backfired on far too many people to blow it off. Sometimes it's not even the patient's fault. A dr. makes that decision for them. For example with Chemo no being offered in conjunction with rads. I get that it sucks, it's horrible and makes the treatment even more unbearable. BUT aside from chemo being systemic, and having the power to kill a stray ca cell that may have traveled outside the radiation area, it also sensitizes the tumor and any other cells inside the radiation area. While a dr. may consider that they are giving you a break by not throwing chemo into the fray. Personally I would prefer to have the treatment and suffer a little more (or a lot depending on the individual) than have a recurrence at a later date and time.
Also it is very true that post treatment - if you have a recurrence it is harder to treat - (though I do agree totally with Charm's point that in this day and age that it is not necessarily deadly - though it can be) this is often because your choices may be fewer, and the treatment more damaging.
ie: a second round of rads that takes your ability to swallow. A spread that requires salvage surgery that may take your tongue, larynx, voice box, jaw etc.... not deadly but definitely something that affects quality of life. Mind you three time recurrences survivors do happen - even five time - Paul, Christine, Kelly, and Charm are all prime examples of this. But not everyone gets that opportunity. I think the numbers of multiple recurrence survivors are much fewer that those that didn't beat it second or third time round.
So IMHO it is necessary to do what you can to get it first time out. (this includes educating yourself so you can ask the drs. WHY? or WHY not?)
And for some drs. knowing you want it treated aggressively makes a difference. for example. I asked my rads dr. during the first week of rads how my post of head ct looked. He said it was a baseline scan so it didn't matter. Now that question forced him to look at it - he sent a student out who must have noticed something because the next day he called me back to tell me he was rewriting my program to include the left side because a small 3mm node had highlighted on the opposite side from my surgery and original tumor, and while it could be something unimportant (inflammation etc...) he knew I wanted this treated aggressively so he was going to include that side of my neck as well.
Most people who were here a while ago will remember Eliza. She had a tumor on her cheek removed - and 18 nodes in her neck - all were negative (the standard is usually above 30). Was sent home as per her dr. and told she needed no follow up treatment. A while later she felt a node pop up in her neck.. went back. They removed another 20 nodes - all of them tested positive for cancer. From that point on they operated, radiated, and gave her chemo, they got rid of the cancer in her head and neck but by that time it had spread to her ribs, and vertebrae.
If from the outset she'd received chemo, and rads - (which would have been to her neck and mouth) I truly believe she would still be with us.
Nothing is ever 100%. even getting the full gamut of treatment doesn't guarantee no recurrence. Just as some people here have been very fortunate to walk away with a surgery and no rads and chemo. (I think this very much has to do with the initial aggressiveness of the cancer and how long it has been there)
But I do firmly believe that going at this disease with both barrels the first time out definitely saves lives.
Last edited by Cheryld; 01-23-2013 09:33 AM.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Play nice gentlemen
Last edited by EricS; 01-23-2013 09:30 AM.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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