Chemo option left up to us - 1 week to decide

as his, but I had surgery to remove a tumor in my jaw, 21 lymph nodes and did not get clear margins from the tumor removal.  He went back in and took more jaw and then I did get clear margins.  I had to do rads (30) mostly as a precaution, but no chemo.  Now, they did tell me that I didn't have chemo because of the clear lymph nodes and the fact that it doesn't do too much with the type of cancer I had.

Second opinion?  I'm sure someone on here would have good info for you, too! 

Hi Leanne,

I had an unknown primary Tx N2b MO Stage IV HPV+.  A selective neck dissection to remove the tumors which were extracapsular.  My treatment was 30 rads and 6 weekly Cisplatin infusions. If it were me, and it was, I would do the same thing again. the chemo acts as a radio sensitizer, increasing the effectiveness of the radiation. It also kills any stray cancer cells that may have made it into the bloodstream or lymphatic highway. Remember, all it takes is one stray cell for a recurrence. If he can handle it, I would go with the chemo. 

Positive thoughts and prayers.

"T"

Leanne,

I was given all the choices you have mentioned and decided on the surgery, rads and Erbitux.  The trifecta of cancer killers just had a nice ring to it. Anyway, I had no dissenters in my team, we were all in.  Unfortunately, there are no (100%) guarantees in good outcomes.   It is not as bleak as “Sophie’s Choice”, they will closely monitor you for reoccurrence with the ability to re-treat if needed and you might dodge some of the side effects, who knows.

The difficult aspect of being an “arm chair advisor” is this is your life, I want you to defeat this monster and I want you to have as few side effects as possible.  If I was to do it over, I’d vote for the scorched earth policy all the way.  Then again, I don’t run red lights, I don’t speed and I rarely gamble. 

Whichever direction you travel there are tips and tricks (not magic) to aid in your survival.

Matt

Hi Leanne

My primary was base of tongue rather than tonsil, but my staging was roughly the same.  I had lymph node involvement on both sides, however.   I had one very large lymph node surgically removed, and then I had tonsils removed.  I received a heavy dose of radiation to both sides of my neck.  I wasn't given the option of skipping the chemo. 

I highly recommend the chemo.  I found the radiation to be the most difficult part of the treatment.  I received Cisplatin, and several very effective anti-nausea drugs, and I got through the entire course of chemo treatment with minimal setbacks. 

Recurrent cancer is a far more problematic thing to deal with.  You don't want to go there, if you can avoid it. It's been my experience that the ENT's, who understand less about chemo than do the chemo oncologists, often don't recognize how important chemo is to the cure.

Deb

ET@cowboy said:

I had SCC stage 3 with clear margins after surgery. I did not have chemo because of a solitary kidney. My surgeon recommended radiation after surgery. I recently saw the ENT who originally diagnosed my cancer and he stated radiation was over kill if the margins were clear. Every case is different. My surgeon recommended only one side rads, however the Onc felt different and rad both sides. SCC responds well to rad only and I feel my ONC was not as up to speed as my surgeons. Anyway it is to late now both sides were rad. According to my onc age is a factor in all this. Who knowes except GOD and the drs. Good luck with your desicion. Stay positive.

Glad to hear only one side of rads is recommended. I had rads & Cisplatin. I truly believe my long term ill effects are due to the rads and not the chemo. My 1st Cisplatin tx was rough on me so I went to half doses weekly and that made it much easier.   

Ask your physician what the standard treatment protocol is. If they can't tell you, get another opinion. Like others on here, we were told the gold standard is a combo of chemo and radiation-and that chemo enhances the effect of radiation. Even though chemo may be overkill, there is no evidence to date that just giving rad is as effective as both chemo and rad. Would recommend going to a cancer center where they treat a lot of head and neck cancer and where there are specialists who are expert in treating this disease. 

Kreps said:

Thanks

Thanks to everyone for their feedback. Anyone out there who has done Cisplatin and had bad side effects with hearing loss? Also, they are wanting to do 1 chemo treatment each monday for 6 weeks - so 6 total treatments. It seems like this is supposed to be easier on you that the 3 big bags or so that I have heard of? 

He doesn't want to do Erbitux because there have been a couple of patients in our town who have had lethal allergic reactions to it and there is no type of test to find out if you'll have a reaction.

They mentioned putting a tube in his arm so he wouldn't have to get an IV each monday for the chemo but the nurse told him today that stint runs all the way to his left atrium? How does that work?

Thanks!
Leanne

Leanne.

I had Erbitux with the standard acne reaction. My chemo onc said she had good luck with cases presented like mine was and that is why I had Erbitux.

As for the thing in the arm, it is called a PICC and you can see mine on my expressions page.  When it was working well it made infusions and blood draws easy.

Good luck

Matt

My husband wanted me to write and tell you his opinion of the treatment that was suggested to you: He was diagnosed with tonsilar cancer (HPV+, P16 elevaed) in Feb 2013 after biopsy (x2); then had a tonsillectomy in March; started chemo (Cisplatin x3 doses, one every three weeks, because 'you're a big strong man with a good heart and good kidneys and we feel you can handle the larger dose') concurrent with radiation (x35), in April, 3 weeks post-tonsillectomy. BOOM BOOM BOOM! He is now 3 weeks out from completion of therapy. He wants me to tell you what he deciced (HE decided) to do what was recommended by the team of RO, MO, ENT, PCP. No if ands or but's. (He shy's of writing because of his typing skills!)

The first dose of Cisplatin was a breeze, except for some N/V (nausea and vomiting). The second dose of Cisplatin didn't go so well, as it was administered improperly (ALWAYS needs to be ran with a concurrent IV of Normal Saline at a rate of 250 ml/hr to flush the kidneys). The third dose went much better, as I literally stayed at his beside for 4 days and monitored EVERYTHING.  Currently, his only side effect from the treatment is pain with swallowing (which he sez is a MF'r), tongue discomfort, and intermittent ear pain. He is using his G-Tube for nourishment. (Ismolite 1.2, 8 cans a day, along with 2 'normal' pureed meals organic and alkaline in nature) Niether one of us want or expect this 'C' beast to come back. The treatment was not easy, we have to be and think like a warrior. This is WAR!  

He wants me to emphasize how important good, vigilant oral hygiene is, no matter how painful. Scrub your tongue with oral sponges, salt/soda water, hydrogen peroxide for the mouth, and don't chicken out! He drank herbal tea with honey, and ONLY alkaline water that has a pH of greater than 8.0.

Of course this goes without saying, but here goes, ultimately it's for the one going through the treatment to decide, but informed decisions are the best. We gleaned so much good information from this site, and some scary information as well, but scary enough to learn what to do and what not to do.  He highly recommends this site as a source for pertinent and accurate information based on 'been there, done that'.

Best wishes for your 'trip'. We've been climbing the hill, and now feel we are on the other side. Thank God!

Ruben and Jude

leanne, in aug., 2009 i was diagnosed with c of the voicebox.  i only had 35 rad trmnts b/c they said chemo would b overkill.  well, in feb., 2012, guess what, the cancer was back.  then i wasn't lucky enuf 2 get chemo, i had to have a complete larengectomy and neck disection.  i'll never know if it would have not come back if i had had the chemo but i'll always wonder.  altho i didn't have chemo, i can tell u this, chemo has to b easier to deal with than a larengectomy, plus the chemo is temporary but my larengectomy is permanent.  if i had been offered chemo, i would have taken it.

it is a hard deision to make and i wish u the vry best.  please let us know what u decide.

dj