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In other news, I got a call today from my RO with the results of the tumor board discussion. No surprises: Recommending combined chemo and radiotherapy. I have appointments with both the MO and the RO a week from today to go over that and do the test scan. In the meantime I'm reading up to prepare my list of questions, and planning to take advantage of some of the great weather that we're having in the upper midwest to get out and do some fishing. I'll update this thread after my appointment. Thank you all for your advice on PEG and swallowing. That seems to be the next hurdle for me.

Last edited by ChristineB; 05-11-2015 05:18 AM.

Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
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Hi Peter!
Hope you are continuing to do well in your healing. Your original post you were asking about a PEG tube and I wanted to agree with Brian that after a while the ability to taste suffers! I developed food aversions and did not want to eat. Fortunately I never was unable to swallow but there were times I did not want to swallow and there were times I was too exhausted to eat. I would vote for a PEG for anyone with OC.


Jan
Stage IV(T2N2bMo)tonsillar squamous cell CA in 2008. Surgery followed by Cisplatin, Docetaxel, Fluorouracil, followed with Carboplatin and TomoTherapy 33 fractions. Had PEG & Port. Current problems with dysphagia, choking, dry mouth, radiation caries, recent voice change. 2009 thyroid CA followed with radioactive iodine, 2009 melanoma wide resection. CT, MRI, PET all clear. Currently seeing a prosthadontist for restoration of tooth loss.
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It's three weeks post-surgery now, and I am feeling really pretty good. Not using any kind of pain meds at all. I went trout fishing for most of the day yesterday -- a sign that I could definitely be back at work. The weather is too nice for that though. Why have cancer if you can't abuse your sick leave a little?

I had a post-surgery consult this past Wednesday with the Medical Oncologist and Radiotherapy Oncologist. No real surprises came out of it. Because they found escaped cells from the lymph node, we already knew I'd be having both chemo and radiation as follow-up treatments. It was up in the air whether I would have a PEG tube or not. Because of the chemo-radiation combination though - as well as the decision to irradiate both sides of my neck - the RO was pretty direct about recommending PEG. And all of your advice in these messages made it easy for me to agree to that. I have a consult next Wednesday (May 20) with the team that does that up at UW hospital. My second lifetime surgery, all in less than a month. Guess I just can't get enough of hospitals these days!

During the Wednesday visit they also did a pre-treatment CT scan and fitted me for the mask. At this point it looks like I'll have the PEG tube put in late next week or the following week, with 33 radiation treatments (total 66 units) starting on June 1 and going Monday-Friday until they're finished. On Wednesdays of each week I'll be getting the chemo (cisplatin 40mg). So 6 or 7 of those.

At the consult, both the RO and MO repeated that everyone responds to this kind of treatment differently, and that some folks are able to work right through it. In the worst case I will start feeling bad by the 3rd week of treatment and potentially be unable to work from week 5 until 2 or three weeks after treatments end. So we are anticipating that, but hoping for better. I feel ready for whatever comes.

The docs remain confident of and committed to achieving a cure with these treatments, so that makes me confident in turn. But it also means a miserable couple of months health-wise, with restrictions to stay away from crowds and from sick people and getting to know the UW Hospital parking attendants on a first name basis. Nothing most of you aren't used to already.

I just want to say again how much I appreciate all the advice and answers I've found here. I don't know how I'd be this ready without all of your help.


Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
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Peter,
Glad to hear that the treatment is progressing. The chemo and radiation is no walk in the park but should get the job done. You already know to keep your hydration and nutrition up - so that's good. If you can to a bit of a walk every day it will help keep you spirits up - I am convinced that our daily walk with our old dog did my husband a loo of good.
As the radiation hits, you will not have as much energy as you think you should. Be gentle with yourself and get your rest, too!
Best wishes to you and Deb!
Maria


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.
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Hi everyone. My follow-up treatment started today with no surprises. So on the chemo I'm one down and six to go, and on rads 1 and 32. It feels great to have this part of the journey started.

The folks doing the chemo are great, just like all of the other ENT and oncology staff I've met here at the U of Wisconsin Carbone Cancer Center. We feel really lucky to be a 20 minute drive from that place. The chemo staff are taking the nausea issue really seriously. Prior to the Cisplatin today they gave me aprepitant (EMEND), dexamethasone (DECADRON) and ondansetron (ZOFRON), and sent me home with prescriptions of aprepitant, ondansetron and prochlorperazine (COMPAZINE). This is all very comforting. I take the aprepitan on chemo day and the following 2 days, and the others as needed. I am hoping that the ondansetron works for me because the prochlorperazine is said to cause drowsiness, which might prevent me from driving myself on chemo days. Hopefully if I need it a night-time dose will be all.

The IMRT folks doing my treatments are the same ones that made the mask. They also made me a mouthpiece to sheild my left-side (opposite of tumor) teeth from radiation. Those have more fillings that the right hand side. They are using a Tomotherapy Accuray machine for the radiation. That's kind of nice because Tomotherapy is a local-area company. Years ago I had a intern programmer working for me who eventually found a job as a product programmer at Tomotherapy. So there is an attractive symmetry to that. As to the treatment itself, not bad. The mask fit a little too tight over my adam's apple so they'll adjust that tomorrow. But I can't say I had any kind of serious claustrophobia, and am sure I can get through these treatments with no worries about that.

Tomorrow is an 8:15AM radiotherapy, followed by a 9AM check-in for PEG insertion, overnight stay, noon discharge on Friday, followed by radiotherapy. So by Saturday I'll be fully underway in this part of the treatment. Many thanks to everyone who posted of their experiences. This let me know ahead of time what to expect and which questions to ask. Can't thank you enough, really. I'll try to post the PEG experience too in case anyone else can learn from what I'm going through.


Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
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PJE, dont be surprised if you arent able to drive yourself to treatments. Most of us ended up taking some pretty strong pain meds and driving wasnt an option. My son began driving me after about the 2nd week.

The best thing you can do to help minimize side effects is to concentrate on what is within your control... your intake. This is something I cant stress enough! Every single day you need ta least 2500 calories and 48-64 oz of water. If you can take more in that will only help make this easier. When I went thru this, the others urged me to watch my intake and I failed miserably causing more hospitalizations and suffering than I thought was even possible. Please be a better listener than I was and begin right away with pushing your daily intake to meet the minimum numbers.

Best wishes!!!


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
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Hi Peter, it is good to get rads and chemo under way isn't it. Those meds were exactly what were prescribed for Kris when he had his Cisplatin. Take them as prescribed even if you are not feeling nauseous. Kris had no nausea at all with this cocktail. I hope the next weeks go easy for you. Take Christine's advice and keep your intake up. Even though you will have the PEG installed it is very important to keep swallowing. Those muscles forget how to do the job if you don't. Kris managed to slide a poached egg down every morning and drink at least 1 can of Ensure a day. As the swallowing got tougher, we put the other 7 Ensures down the PEG. To this day, Kris has had no problems with swallowing.
Thinking of you,
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!
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Glad to here you have finally started. Cisplatin can be quite rough on the body and the mind. I started to forget what I took and when. I resorted to putting a log sheet near the pile of pill bottles. I wrote down what I took and when. Day two and three are the worst. Hopefully the weekly dose is milder for you. Good luck., and keep eating and drinking.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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Do you have a cream for your radiated skIn? Don't put it on before the radiation treatment, but bring it with you and put it on after you come out of treatment, paying particular attention to the folds in the skin, that's where the burns and skin breakdown will be the worst. When the skin breaks, cover it with a nonstick dressing to protect it. You will likely feel fatigue setting in after a week or so of radiation. So, be careful if you intend to drive.
Take the anti- nausea medication when you begin to feel queasy, don't wait. You need to the get ahead of the curve. if the pain media give you constipation, talk to your care team about getting some stool softener and Senakot.
Good luck, you will be able to do it. We are all here to help.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Thanks everyone for your advice and words of support. I had the PEG placed this morning and they're keeping me overnight for evaluation. It went pretty smoothly, exept getting the through-the-nose tube to inflate my stomach with air was pretty uncomfortable. In recovery I made the mistake of moving too quickly and that caused enough pain at the placement site to cause me to faint with 30bpm heart rate and 64/30 BP. When I came too I had a bunch of med staff looking after me and they pretty quickly brought things back to a normal range.

Christine - I just had a visit from the RD, and their plan for me is 2,100 calories per day. Probably based on body type/weight. I'll try to beat their plan.

HockeyDad - I am going to take your advice about the list. With the addition of the three anti-nausea things I can't even remember everthing I'm assigned to take now. Appreciate that tip.

Tammy - I'm going to try to continue to take nutrition and water orally as long as I can in order to address the very problems you advised me of. Swallowing is one of those important life skills, isn't i? ;0)

Gloria - I am a strong believer in staying ahead of the pain curve with meds, and extending that to nausea makes a lot of sense too. Thanks.

It really *does* feel good to be fully on my way with this. And you guys are a lifeline. So glad to have found this!


Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
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