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#136743 - 07/15/11 04:44 AM Re: Wondering if it's worth it [Re: ConnieFL]  
Joined: May 2011
Posts: 267
msmac Offline
Gold Member (200+ posts)
msmac  Offline
Gold Member (200+ posts)

Joined: May 2011
Posts: 267
california
Hi Morgan,

It's great that the neck brace is so helpful for you. I'm so glad that it gives you some relief.

There are lots of people here who have experience with Erbitux. Hopefully they will chime in with some information for you. I have only had one dose so far and it was just two days ago, so I am far from an expert, but I'll tell you my experience so far. I had some nausea and vomiting the night of the infusion and had a very severe headache. The next day the nausea was gone, but the headache was still pretty bad. I am now on the second day after infusion and I feel just fine. I'm not sure my experience was typical though. My doctor said it does not cause nausea for most people.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
#136758 - 07/15/11 03:54 PM Re: Wondering if it's worth it [Re: ConnieFL]  
Joined: Jul 2011
Posts: 33
morgan44 Offline
Contributing Member (25+ posts)
morgan44  Offline
Contributing Member (25+ posts)

Joined: Jul 2011
Posts: 33
VT
I've been told that surgery could involve removal of a third of my tongue, and I should be prepared to need speech therapy among other possible repercussions that, frankly, are worse options than radiation/chemo.

I really don't wish to go into all my personal medical history that would preclude surgery, but suffice it to say that I already have a heart condition and even the minor surgery to put a PEG in is going to be avoided if possible.

I realize this is a tight group of people who are like-minded, but I will proceed as I see fit, in coordination with my own team of doctors, whom I believe are all well-schooled and with the proper medical options and protocols designed for my particular situation.

As you all (and my docs) continue to tell me, "everyone is different," and this is most certainly true in my situation. I don't have the means to travel great distances for treatment, such as Baltimore or NYC, although had Dartmouth offered the same treatment I will be receiving in Vermont, I would have considered daily commute over to New Hampshire. But Dartmouth confirmed that the oncologists in Rutland who are treating me as as good as their own teams, and that's enough for me.

#136760 - 07/15/11 04:23 PM Re: Wondering if it's worth it [Re: morgan44]  
Joined: Oct 2008
Posts: 251
RPCV Offline
Gold Member (200+ posts)
RPCV  Offline
Gold Member (200+ posts)

Joined: Oct 2008
Posts: 251
VA
Morgan,

Thank you for explaining why you are not a candidate for surgery. We are not trying to be nosey, we just want what is best for you.

I am glad you are happy with your treatment plan and team. Confidence in them is very important.

Many people here have gone through the treatment you are facing, and can help you through it with good advice. All you have to do is ask.

My best to you!


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
#136761 - 07/15/11 05:23 PM Re: Wondering if it's worth it [Re: RPCV]  
Joined: Dec 2010
Posts: 289
AnneO Offline
Gold Member (200+ posts)
AnneO  Offline
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Joined: Dec 2010
Posts: 289
Kansas
Please understand that everyone here is on your side. I wouldn't say we are all like-minded. Stick around and you'll see a number of differences. It's just that everyone knows proper diagnosis and plan is the first step to success. You had us all worried from the get go wondering if it was worth it. Yes, there are oral cancer survivors who have done ok at community cancer centers.

I saw that you were having more days of radiation than the days of radiation that I had with surgery, so although I wondered about why no surgery, I figured that was the "make-up" for not having it.

You surely aren't having radiation for 20+ minutes at a time, though. It probably seems that way with the rehearsal, but I always counted the music they played and estimated where we were in the treatment. You'll get very good at knowing how much longer you have during those sessions.

I wish you a smooth week next week, or as smooth as it can be considering. Please ask for help from your radiation team or bounce it off this forum if you need it, or you just need some support.

Best,
Anne




Last edited by AnneO; 07/15/11 05:24 PM.

SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015
#136765 - 07/15/11 06:53 PM Re: Wondering if it's worth it [Re: AnneO]  
Joined: Apr 2009
Posts: 329
ConnieFL Offline
Platinum Member (300+ posts)
ConnieFL  Offline
Platinum Member (300+ posts)

Joined: Apr 2009
Posts: 329
Fort Myers, FL, Lockport, NY
Morgan,

Ditto to what Anne and Catherine wrote.

Yes, is it worth it scared me I'm glad you're getting treatment and it goes smoothly for you.

Best Wishes,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



#136782 - 07/15/11 10:55 PM Re: Wondering if it's worth it [Re: ConnieFL]  
Joined: Jul 2011
Posts: 945
Maria Offline
"Above & Beyond" Member (500+ posts)
Maria  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Ohio
Hi, Morgan
my husband recently completed radiation therapy + cetuximab. He did get the rash, but it was managable with the right topicals (Eucerine Aquaphor worked for him) and the oral antibiotic Minocycline. You have to stay on top of it, though, and religiously to your skin care regimen.

The heuristic about one week of recovery for each week on the table seems to be subject to some variation. The end of radiation and the week or so thereafter was pretty wretched for my husband, but then the improvement began. He cut back to a single vicodin at night so he could safely drive to work HIMSELF a couple of weeks after the radiation was complete. He is stubborn. In terms of physical stamina, he still has a ways to go - but its coming.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
#136866 - 07/18/11 01:15 PM Re: Wondering if it's worth it [Re: Charm2017]  
Joined: Jun 2007
Posts: 5,260
EzJim Offline
Patient Advocate (old timer, 2000 posts)
EzJim  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
WOW, such great answers you have gotten Morgan. These are people that know and understand. They are been there and done that people. As for your age, I am 75 1/2 and want all the time I can fight for. I consider us as young pups yet and I want to be an old DOG.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
#136888 - 07/18/11 05:42 PM Re: Wondering if it's worth it [Re: morgan44]  
Joined: May 2011
Posts: 287
Eshwar N Offline
Gold Member (200+ posts)
Eshwar N  Offline
Gold Member (200+ posts)

Joined: May 2011
Posts: 287
Delhi, India
Originally Posted By: morgan44
I've been told that surgery could involve removal of a third of my tongue, and I should be prepared to need speech therapy among other possible repercussions that, frankly, are worse options than radiation/chemo.


My dad had a left partial glossectomy (about half of tongue removed, remaining folded to construct) along with SND followed by Chemo-Radiation. For him surgery was much easier than radiation/chemo.

It took a whole year to recover from Radiation and now he has to undergo treatment again for recurrent disease.

Trust your doctor and let them do what they feel is right for you. Sharing your experience helps other to plan or probably ask their doctors.


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
#136892 - 07/18/11 06:30 PM Re: Wondering if it's worth it [Re: Eshwar N]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
Morgan

Again, good for you on pushing back politely on some of these comments. IMO, You are fine being treated where you are. the Foley Center plan for you sounds exactly like the plan that my CCC, the Lombardi Cancer Center in Georgetown, had for me for a BOT tumor. (Radiation & Erbitux) I would have been worried if they had suggested surgery instead of radiation. Base of tongue cancer is not treated the same as other oral cancers or even lateral tongue cancers. Surgery is an option of last resort, to be avoided whenever possible. My understanding is that the majority of oncologists would not recommend surgery for even small tumors at the base of the tongue due to the potential complications.
My ENT surgeon was adamant on this point when she handed me over to the CCC RO and MO.

Two quick items: Erbitux is like that nursery rhyme: when it is good, it is very very good, when it is bad, it is horrid.
My only regret with my CCC plan was that I did not insist on getting carboplatin along with the Erbitux. For a minority of patients, Erbitux simply does not work. They have developed a test to weed out patients with colon cancer for whom it is worthless, but it's luck of the draw for us head and neck cancer patients. It could not hurt to discuss this with your doctors. I was told the same rosy story as you so I am a skeptic about Erbitux now. My doctors were upfront the second time around that there was no point in giving me any more Erbitux so they switched to carboplatin

As far as avoiding the PEG, it's difficult but can be done. I went thru all 40 radiation and 8 Erbitux with no feeding tube. I did end up living on liquids like Ensure Plus the last three weeks but I never got dehydrated nor needed any medical attention from not having a PEG. I was swallowing normally very shortly after radiation.

The American Cancer Society advice is generic and as I first posted, waiting and watching is actually good advice for prostate cancer - it's so slow growing and I've just seen another major study that no man over 65 should bother with surgery for prostate cancer but just do cyberknife . There are no such studies for base of tongue cancer - the longer you wait, the worse it gets.

Last but not least, have you asked about getting specific pain medication or muscle relaxants to take for the radiation table - I was pretty doped up each time on the stuff my radiologist prescribed and he said it would have no effect on the radiation's efficacy

You can always get surgery if worse comes to worse but lots of posters here did just fine with radiation and chemo only
Keep the Faith
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
#136893 - 07/18/11 06:34 PM Re: Wondering if it's worth it [Re: Charm2017]  
Joined: Dec 2010
Posts: 289
AnneO Offline
Gold Member (200+ posts)
AnneO  Offline
Gold Member (200+ posts)

Joined: Dec 2010
Posts: 289
Kansas
Morgan,
I agree, after reading your last post I am glad you are doing what you are doing. Applause to Charm for his comments.
Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015
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