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#194477 05-18-2017 10:22 PM
Joined: May 2017
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TrevorL Offline OP
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Hi All,

I appreciate more than ever that I've gotten to age 70 with no major problems. I had a mastoid infection at 3 years old. That was the last time I was admitted to a hospital. But now we have a winner. I had coldlike symptoms around the first of the year, so a sore throat seemed like part of it. When it continued into February along with what I thought were typical tongue blisters, I investigated further. I have care with the VA, but chose to avoid a long ER wait by using Medicare at an urgent care. I figured they could confirm or rule out strep. Tested negative, but the young doc there strongly recommend seeing an ENT. I passed on the symptoms and his thoughts by email to my VA primary, whom I normally have great faith in. Her nurse called a few days later and started yammering about acid reflux. I wasn't even listening. By then lymph nodes behind my ear were swollen. So again, I used Medicare to find my own ENT and chose well. He examined me March 13th with a scope and sent me for bloodwork, CT, and FNA of that left lymph node, done March 23rd.

The cancer diagnosis came back in early April. It pays to be proactive. Acid reflux my.... The ENT wanted a PET scan next, but I'm on Social Security and knowing the out-of-pocket after Medicare would be a big chunk of the $11K PET, I had to go back to VA. At least this time they were listening and the care has been very attentive. My tumor is a bit large for "the robot" (surgery). I start RAD this Monday (May22) and chemo probably a couple days later. These last 2 weeks have been the prep and learning curve plus healing from having all my lower molars removed ahead of the RAD. The diagnosis actually wasn't that shocking. I knew there was something very wrong.

What I didn't expect was how brutal the treatment will be and some of the permanent effects. It amounts to "we can probably keep you alive, but it won't be the same". I may be able to chew again as a Christmas present. Until then it's Glucerna and the PEG (also coming soon). This story isn't anything new, I'm sure, for the folks here, and my HPV-16 related tumor under my tongue is nowhere near as frightening as some of the other cases. I'm apprehensive, but hopeful. I've ordered my first-ever passport and planning to visit Europe in the Fall. P.S. get your teens vaccinated for HPV.

Trevor


Age 70
FNA biopsy March 2017
Dx SCC BOT Size T2, stage 3 April 2017
RAD started May 22
Chemo began May 24, Getting 3 rounds of Cisplatin
Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, Trevor! Im very sorry you have a need for our group but we will help you with info and support. You are doing a great job at being your own best advocate and pushing to get your diagnosis. Most patients know when something isnt right and sometimes getting a doctor to listen and follow thru isnt easy to do.

Radiation treatments for most patients arent easy. Many here who have gone thru rads after being diagnosed with HPV+ OC have an easier time than those HPV-. You didnt mention chemo (unless I missed it), will you be getting chemo?

Focusing on what you have within your control, you may sail right thru rads with barely any noticeable side effects. By focusing on your intake it will help you to get thru this easier. Every day you must hit the minimum of at least 2500 calories and 48-64 oz of water. If you can do more thats even better. With your treatments starting very soon, I suggest eating all your favorite foods. Im not sure why you arent able to eat but you arent the first patient who drank their formula to get thru treatment. Are you able to eat soft, easy to eat foods like yogurt, applesauce, soups, or pudding? Do you know when you are getting the feeding tube?

If you havent already done so contact the American Cancer Society. They can help you with several things. First they run a driving program that matches patients with drivers to help get you back and forth to treatments and appointments. You might only get someone to help you by taking you a couple times a week or you could get lucky and hit it off with a driver nd they take you every day. The drivers are all survivors and caregivers. I drive patients in my area on occasion. There is also a program to give you up to $300 to cover your transportation costs or a voucher at your pharmacy to cover medicine co-pays. These programs have paperwork to do that needs your doctor to sign so it can take a couple weeks but ,its well worth it. If you had planned on driving yourself to treatments, you might want to consider having others help you when you start feeling the side effects. Most patients take strong pain medicine so its not safe to drive.

Anyone who offer to help you get thru this, take their contact info and let them know you will let them know when the time comes what they can do. Friends and relatives genuinely want to help but often they dont know what they can do to help. Theres a million little things that add up to many tasks others can do to help. Walking the dog, picking up medications from the pharmacy, picking up groceries, doing a load of laundry or even mowing the grass all can help your tremendously when you arent feeling the best.

Hope this info helps you get ready for your treatments. Please ask questions, we'll be happy to help you. 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
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Welcome to the forum. You were absolutely right to be proactive. As you continue on your journey, you will find that if you can stay ahead of the game -- writing down questions for doctors, working hard on your daily intake, etc -- can make a huge difference to your level of comfort.

The need for a PEG may be somewhat of a shock, but it will make it way easier for you to reach your intake goals and stay hydrated. By the middle of the third week of radiation, you may find it difficult to swallow because of the pain and the swelling. That's when the PEG will be a blessing.

Have you been given swallowing exercises to do? Please do these every day. Swallowing muscles will become atrophied if they are not used even for a month. Maintain your swallowing ability is key to preventing aspiration (and the related problems) further down the road. Even doing dry swallows throughout the day will help.

Do come back and update us from time to time. All the best!


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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TrevorL Offline OP
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Posts: 15
Thank you for your kind support and advice. My troubles seems small potatoes after looking at others' histories here. As to your questions: Yes, I have chemo coming. Not much info aside from the initial consult with the MO, but her assistant called yesterday to set me up for urine collection to check kidney functions. I'll see them on Tuesday or Wednesday and we'll get started. For eating, it's really not much trouble right now. For the 10 days or so following the difficult extractions, things were too sore for anything but soft foods like you mentioned. Other things I had to chew with only front teeth or bicuspids and the pallette and gums get sore. Still, I'm being a whiny baby about all that, I know. I am, as you suggested, eating things I like and kind of "bulking up". It's more that I felt a bit blindsided by that part and discovering that there wouldn't be any partial or bridgework until months after treatment. It seems details on the effects of treatment came gradually over these few weeks. I think if one was told everything at once, they'd want to run off.

I'm glad to be able to feel this sense of community and support. I appreciate the immediate responses here and the advice.

Trevor

Last edited by TrevorL; 05-19-2017 07:08 AM.

Age 70
FNA biopsy March 2017
Dx SCC BOT Size T2, stage 3 April 2017
RAD started May 22
Chemo began May 24, Getting 3 rounds of Cisplatin
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Im glad I was able to help you! Thats why we're here, were one big extended family who will help each other get thru the rough spells smile

Make sure you get blood work with a full order to check thyroid and testosterone levels before you start treatments. This is easy to do now but you cant go backwards years later when you have problems with your thyroid or energy levels and get what your normal numbers should be for these things.

If you are getting cisplatin for chemo ask about the smaller weekly doses instead of the 3 big bag method. That could be for any chemo carboplatin or Erbitux too. Smaller weekly doses are easier to tolerate and have less side effects. For our type of cancer (SCC) chemo alone doesnt do much except shrink the tumor. Chemo is used to help make the radiation more effective.

Watch out for cisplatin too!!! Pay close attention to any change you have with your hearing... if you notice a change tell your doc immediately. Cisplatin is known to cause high frequency hearing loss and its permanent. Also any difference in kidney functions as there can be problems with your kidneys from chemo too. Thats why is so important to push extra water on chemo days. I suggest doing more water the day before, the day of chemo and the next day or two afterwards.

Maybe you could puree some of your favorite foods? Do your best to eat them now before you have any changes in your sense of taste or ability to swallow. Those things are only temporary but they can make this so difficult to get thru. Like anything, we all have good days and bad ones. Dont worry we will be here to get you thru this.



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
Joined: Dec 2016
Posts: 46
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Posts: 46
Hello Trevor and welcome!

Just to tag on to what Christine said, it is important to ask for the hearing test prior to treatment with Cisplatin. The fact that I had hearing loss in one ear was the deciding reason my Dr. went with the smaller weekly doses instead of the three big doses.

Don't freak out over the PEG tube. It's not nearly as bad as we first think. Pretty soon you will glad you have it! Getting food and liquids into you will be as easy as pop and pour.

Remember, the treatments aren't easy, but they are doable. The fact that you have been healthy most of your life is a plus for you! Some of us tolerate the treatments better than others. You look like you can be in that group. I am sure you are aware that the HPV diagnosis gives you a much better prognosis so keep thinking positive.

Best of luck, Trevor!

Ed



Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
Joined: May 2017
Posts: 10
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Hello Trevor,
I just want to wish you luck with your upcoming treatment, and more importantly....THANK YOU FOR YOUR SERVICE!
I work at my local "VA".....if you ever have issues, please reach out the the "Patient Advocate", they are a great resource.
Don't ever feel like your "issue" may be minimal compared to others!!!!
Again, best of luck to you!


MrsSmitty
Joined: May 2017
Posts: 15
TrevorL Offline OP
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Posts: 15
MrsSmitty,

Thank you. I have to say that despite all the publicity in recent years, I'm quite please with the attention and care at VA. The only wrinkle is the off-base guess my primary made on my symptoms. Still, she's a wonderful woman and doctor albeit overloaded. Everyone from nurses, IV team, my ENT, MO, RO, nutrition, psychologist, swallow therapy, and more have been terrific and comforting. I'm a little apprehensive, as anyone would be. I did have a small wave of panic inside the scanner for contrast with the mask on and restraints to hold my shoulders down. There's a childhood memory that leads me to freak out with any kind of restraint. Some deep breathing got me through it and I'll do the same tomorrow. I expect as I get used to treatments, that will go away. Of course the effects will build too. I'm ready to deal with it all and again, so appreciate the support of all at the VA and especially here on OCF forums.

Thanks, all


Age 70
FNA biopsy March 2017
Dx SCC BOT Size T2, stage 3 April 2017
RAD started May 22
Chemo began May 24, Getting 3 rounds of Cisplatin
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Best wishes with your treatment starting tomorrow. Its not fun being bolted down to the radiation table but I have faith you will get thru it. At my treatment center they allow you to bring in music to play during your treatment. Maybe that would help to make you feel at ease a little? When I went thru rads, I used to lay there with my eyes closed and count in my head. It helped me to focus on something other than what was going on around me.

Best wishes with everything tomorrow!


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
Joined: Jul 2014
Posts: 13
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Joined: Jul 2014
Posts: 13
Hello TrevorL,
It would only be natural to be apprehensive of the treatment and recovery road ahead. After inventorying my fears, I prayed for strength. My takeaway was to just try to take care of the business of the day...just get through the day. You mentioned deep breathing helped you through the restrained radiation session. I did the same thing and framed it mentally as a form of meditation. Again, what helped me was just keeping in mind that I only need to take care of the business at hand today....no matter what it was. I made a lot of protein shakes and amino acids, high calorie soups and pastas and did was able to get through without the PEG. Please ask your support for help when you need it. I was given medication for each malady that came up. Stay strong. I got through it (even worked a couple days a week) and you will, too.
RogerP


RogerP
SCC BOT with bilateral lymph node tumors - Stage IV
Dx 7/10/14
Biopsy shows HPV marker
Non-smoker, non-drinker
Came to MD Anderson a CCC on 7/24/14
PET did not show metastasis 8/2/14
Began induction chemo 8/10/14 Carboplatin, Paclitaxel and Cetuximab
Completed induction chemo 9/22/14
Completed chemo and proton radiation 11/13/14
Follow up checkups 1/15, 5/15, 8/15 12/15 5/17 Still Cancer free!
Otherwise healthy 67 year old male from La Selva Beach, CA….now almost 70!



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