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atcbugsy's Message Board Messages

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RE: Visit to MD Anderson

by atcbugsy - February 20, 2019

Thanks Arman.  I hope you're doing well as well.  Take care.

Bugsy

Hiya Jack,

Sorry you're here, but glad you posted.  My wife and I researched both therapies as well and wanted to do IMPT for the reasons you stated.  Our biggest hurdle was that BCBS would not cover Proton radiation treatment.  I asked my Oncologist (MD Anderson in Houston) if he would write a letter supporting the use of IMPT and he said that in my case T1N2aM0 for SCC at the base of my tongue HPV 16+ IMRT was the way to go.  So, we did the IMRT.

The bottom line for us was the success rate for my type of Cancer using IMRT.  I'm going back to MD Anderson in about two weeks for my five year checkup.  Treatment was hell and recovery was s-l-o-w.  There are constant reminders-fluoride trays, biotene, lack of saliva, neck exercises.  But a small price to pay to have my life back.

So, be sure and check with your insurance company regarding IMPT for your type of Cancer if you haven't already done so.  Then speak with the facilities regarding success with your specific type of Cancer.  Just my $0.02.

Best of luck.

Bugsy

Visit to MD Anderson

by atcbugsy - February 17, 2019

I'll be at MD Anderson in Houston 3/3/19-3/5/19 for what they are calling my five year checkup.  If anyone is or will be out there during my visit and you would like to get together, please send me a PM and we can work out the details.  I'll post my results as soon as I get them.

Best of luck.

Bugsy

RE: 2 year mark

by atcbugsy - October 28, 2018

Congratulations Tig!

Bugsy

RE: fatigue

by atcbugsy - September 04, 2018

Hiya Mike,

I'll echo what everyone else has said.  You've been to the gates of Hell.  You'll be back, but it's a S-L-O-W journey back.  Trust your body to tell you what it needs.  Pushing may only make your recovery slower.

Best of luck.

Bugsy

jkohio,

I'm sorry you and your husband are having to go through this.  Your story sounds similar to how mine presented as well, but mine was at the base of my tongue.  Lucky for me the lump presented and we caught it early.  If it didn't, who knows how bad it would have become.  Sounds like the same is true for your husband.

My PET Scan revealed mine was either at the left base of my tongue, or in my left tonsil.  My ENT did the tonsillectomy and also biopsied my throat/oral cavity.  The tonsils were clear, and the cancer cells were at the left base of my tongue.  The tonsillectomy SUCKED.  For 11 days I sat at the kitchen table with my head in my hands and no matter what I tried to eat or drink, it tasted like burnt dirt.  And the pain was like nothing I'd ever felt before.

We live in North Georgia and our ENT referred us to a local Cancer specialist who recommended radiation and chemo.  No surgery, but a pretty aggressive treatment plan.  After my wife and I got done researching, we decided to get a second opinion and circumstances brought us to MD Anderson in Houston for treatment.  33 Radiation treatments.  No chemo.  No surgery.  I'm almost four years since my last Radiation Treatment and I'm doing great.  There are still reminders, but I have no complaints, especially compared to the alternative.

My suggestion would be to get a second opinion from a place that does nothing but Cancer.  From your screen name it looks like you're from Ohio.  The Cleveland Clinic is one of the top 10 Best Hospitals for Cancer.  

https://health.usnews.com/best-hospitals/rankings/cancer

The folks on this forum are terrific and a great source of knowledge, information, and first-hand experiences.  Post as often as you like with whatever questions/concerns or experiences you may wish to share.

Good luck with whatever you decide.  And remember, we made it through and you and your husband will, too.

Best of luck.

Bugsy

Aquaphor.  It's available over-the-counter.  Check with your team, but if I remember correctly, if applied before treatment, it has to be applied at least an hour before.  It can then be applied anytime after and/or throughout the day/night.

Best of luck.

Bugsy

RE: 5 Years Clean

by atcbugsy - July 05, 2018

Huge milestone.  Congratulations!

Wishing you continued success.

Bugsy

Ativan.  Prescription required.  You and her should share her fears and anxiety with her Cancer team.  They should have no problem prescribing.  

Best of luck.

Bugsy

Hiya Njmae,

Congratulations on your scans being clear!  The first year post treatment I was getting CT Scans every three months.  These past 2 1/2  years have been every six months.  My most recent scan was in March, 2018 and I'll get (hopefully) my last scan in March, 2019.  My Oncologist said if the scan in 2019 is clear, I'm done with annual scans.  If I remember correctly, one has to be five years out to be declared Cancer free.

Five years out and I still get anxious about it.  I don't think that ever goes away.

Congratulations again on your reports.  Best of luck.

Bugsy

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About atcbugsy

Patient, Survivor
Head and Neck Cancer

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