CSN Login
Members Online: 18

Chemo option left up to us - 1 week to decide

Kreps
Posts: 3
Joined: Jun 2013

Hi everyone. My dad was diagnosed with SCC Stage 4 T1N2bM0 back on June 3rd. He had surgery to remove what they thought was a benign cyst. Come to find out it was cancerous, the primary was in the tonsil and it had spread to 3 lymph nodes. His margins were clear and there was no extracapsular spread.

We are definitely doing radiation but only on 1 side. He has had a PET scan, ultrasound, and CT and nothing shows on the left so we are doing radiation only to the right side to lessen his side effects of dry mouth, sore throat and taste buds. He will be watched closely over the next 2 years.

Adding chemo has been left up to us and we don't know what to do. They are recommending 1 dose of cisplatin at the start of each week for 6 weeks (30 rads and 6 doses cisplatin). The ENT people seem to think adding chemo is overkill, but the oncology side thinks its the best chance to stop a recurrence. We have received opinions from people at Northwestern, Vanderbilt, and Univ of Kentucky and for the most part all surgeon think no chemo, all oncology teams think we need to add chemo. 

Had he not had the surgery chemo and rads both would be necessary but since it has been removed and margins were clear some docs think we don't need to full court press and add the chemo. 

Anyone out there who has has tonsillectomy and neck dissection and only done radiation?? We have 1 week to make a decision. Going to pray for god to give us wisdom and pray for feedback on here.

Thank you,

Leanne

TracyLynn72's picture
TracyLynn72
Posts: 634
Joined: May 2013

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! 

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

my hubby had tonsilectomy left side in april, sore throat and ear pain.

pathology came back scc tonsil stage 3 positive 2 lymphs.

both U of Iowa and our oncologist and radiation oncologist wanted cistplatin chemo at same time, the chemo slows any cancer cells and helps the radiation

work better.

most everyone on here I have talked to did get the chemo with radiation. Hubby doesnt seem to be having much troubles with the chemo, but the radiation difficult. the fatigue is out of this world, but he just finished his third week and third chemo. very fatigued. has chemos on mondays ,come wednesdays and thursdays are the hardest days of the week but bounces back by friday afternoon and can move around and eat soft foods.

good luck in your decision and scroll the postings on here. T, civilmatt, skiffin and phrannie are a wealth of info along with a few others that I cant remember their names

at the moment.

god bless you,

janet

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

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"

Ladylacy
Posts: 457
Joined: Apr 2012

Are you seeing a head and neck specialist?  We were told that radiation and chemo worked together.  My husband's first primary was laryngeal cancer.  He had radiation and chemo first and we thought he was NED but turned out the PET/CT scan was done too soon after the radiation and chemo.  He then had surgery 5 months later.  Cisplatin is very hard on the kidneys so make sure your father stays hydrated, something my husband didn't and ended up having to have IV's a couple times a week.  And being stage 4 I would think chemo is necessary.  I know they like to do radiation and chemo together. 

Second primary is rare at the cervical of his esophagus.  He had another 35 radiation and 7 carboplatin for treatment because surgery was ruled out.  He had an easier time with the carboplatin because the dose was calculated each time on weight and blood tests.

Wishing the best -- Sharon

CivilMatt's picture
CivilMatt
Posts: 2802
Joined: May 2012

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

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

the Drs.....the "people in the know" leave a decision like this up to the patient....like how the heck would we know??  I know when I was first diagnosed I would have really been looking at making the decision that would be easiest and the one that would get me back to work quicker.  I'm glad they didn't drop any decisions into my lap.  I will say, however, that in the beginning, radiation scared me more than chemo.  Now....having gone through treatment....both chemo and 35 rads, I'm glad I did what would afford me the most peace of mind about ever having a reoccuance.  I sure don't want to go through it all again. 

My mom had her larnyx removed, plus a radical neck dissection.....everything was encapsulated as your dad's tumors and nodes were....she had 30 radiation treatments, and did not do chemo.  She never had a reoccuance....but again, everybody is different, every case is different. 

If it were me, I'd do both.  Rads are pretty tough on the body, and for sure he's going to get those....I think when they do the once a week chemo's they aren't the huge doses that those of us who got it every 3 weeks are.....making it more managable by the patient.

p

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

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
Posts: 15
Joined: May 2013

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.

hwt's picture
hwt
Posts: 1816
Joined: Jun 2012

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.   

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

The lymphatic system is the highway to the entire body, once that is compromised and looking at his stage ...I say do the chemo.  I say do the chemo even more so if he is only getting one side radiated.  I say do the chemo even more when you look at (even though I know this is not popular with all folks and even though I know with the HPV factor invovled this data can soon be outdated) the mortality rate five years out for all oral cancers stage III and IV.

I had Erbitux and not the traditional chemo ....I did not have surgery, just rads and Erbitux ....my last tx was Jan 2012 and to date I am NED

This is only my opinion and I am not a doctor :)

Whispered a prayer as well that you have wisdom in this ....

 

Tim

cic2
Posts: 12
Joined: Dec 2012

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
Posts: 3
Joined: Jun 2013

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

CivilMatt's picture
CivilMatt
Posts: 2802
Joined: May 2012

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

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

I had 6 weekly Cisplatin infusions on Mondays. Other than the usual side effects (nausea, vomiting, fatigue) I didn't have any major side effects. I did have delayed side effects from the treatment... gout, nerve pain... If you're concerned about hearing, get a baseline hearing test done prior to treatment (they can test again if he feels he's having hearing issues).  They can swith to Carboplatin should he have serious side effects. 

The nurses in the chemo labs were fantastic and took great care of me. I also went for extra hydration during the week which helped immensely. 

They tapped my veins every week and that was "Ok".. by the end, it was hard to find my veins due to the treatment and my run down condition but we made it. Trust your team.

Positive thoughts and prayers,

"T"

 

 

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

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

 

 

HobbsDoggy
Posts: 165
Joined: Feb 2013

I had unknown primary, stage IV two nodes involved.  Both Indiana University Health and Cleveland Clinic said get chemo as a helper for the radiation.  I got 7 weeks of cysplatin (sp?) and so far so good (7 months out).  It was not fun at all, but I am doing much better now and most, but clearly not all the side effects are gone.  Cannot say of course about your Dad as all cases are different.  I don't think the chemo added a ton of side effects, but would have had less if no chemo.  Still I would do the chemo if it were me, but of course it is not me, always a tough call.

debbiejeanne's picture
debbiejeanne
Posts: 2217
Joined: Jan 2010

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

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network