New member/treatment options/Proton

skidog

Sat, 07/14/2018 - 4:25pm — skidog

Hello all. While I'm a new member to this forum, I've been an avid rsearcher/ learner and reader of many of the good folks who post their experience and stories here. I'm very grateful for you all. You have helped me tremendously  from pre diagnosis all the way through my current status ( 1 week post treatment). I found a lump on the right seide of my neck in January of 2018. I knew this was not normal and schedule a visit with my Primary care doc 3 weeks later. He didnt think much of it and said to give it a couple weeks and if it's still there..have an ultrasound. Which I did three weeks after seeing him. Ultrasound showed a slightly enlarged lymph node but they said to give it a couple weeks and if it didnt go away to have it Fine needle biopsied. 3 weeks later I had a visit with the ENT at UW Hospital. After several attempts (over 2 dozen) she felt like she got enough material to give me the results in a few days. 2 day's later she called and said there were cancer cells present. At this time...I had already done a ton of research and was prepared for that diagnosis...but it still rocked me pretty good. Healthy 53 year old...never smoked and drank moderately. I received 3 seperate opinions on the diagnosis and treatment options. After a PET/CT scan,  I was diagnosed with  early stage( N1) right tonsil SCC cancer with right side node involvement. Good news...it was caught early and cure rate very high. bad news...treatment options all sucked..in my opinion. UW wanted to do TORS with complete right side neck disection. then possible chemo/rad theray. I then made a visit to Northwestern Medical where they wanted to do chemo/rads only. My third opinion came from Mayo Clinic in Rochester MN. They offered to treat it with right side Proton beam radiation only (6 weeks/5 days per week). After receiving these 3 treatment options my wife and I went to work on researching all option available...and I mean a ton of research. During that time period I made radical changes to my diet..cutting out sugar, eating organic meats/veggies/fruit and continued to exercise. 4 weeks later I had a biopsy surgery on my right tonsil and base of tongue. This was supposed to be a 45 minute deal but the ENT took 7 different swipes at the areas and 3 hours later could not find any cancer. SO...with the results of my biopsy coming up a nothing burger combined with the FNA showing a very small trace of czancer activity, this left me wondering if the radical changes I made to my diet and lifestyle contributed to the difficuly finding the cancer (?)well, long story short...UW's board met and decided that IMRT ro the right side nodes and tonsil would be the best option. I chose Mayo and Proton beam instead.

Treatment:

I drove 3 hours (one way) every day by myself to treatment. They worked with me on my schedule so that I would have evening treatments on Monday's and Thursday's so that I could stay overnight and then have early morning treatments on Tuesday's and Friday's so that I could be home by noon. Wednesday's I just drove straight there and back. 

I worked the entire 6 weeks of treatment (I normally work from home/computer) My boss was very understanding and cooperative.

I worked with the American Cancer Society on low priced hotels in Rochester that partner with Mayo for cancer patients to provide affordable accomodations...as low as $19 per night!! nice rooms.

Our Insurance initially denied our Proton Beam therapy treatment option...stating that it was considered "experimental" we followed their appeal process which included a well written lettter from the chair of Radiation Oncology Dept at Mayo and my doctoer..Dr. Robert Foote. They rejected his letter and the next step was to have a conference call with a 9 member insurance appeals board. My doctor and I had 20 minutes to convince them that they needed to reverse their decision due to the fact that they were referencing old data from 2014 when they stated Proton beam was experimental. 3 days later we received news that they reversed their intial denial and that my treatment would be covered in full ...after deuctable of course. I was elated. 

I continued to do yoga/exercise/and walk a mile or two per day throughout treatments. Breezed thru week 4 but about half way thru week 5 the discomfort in my throat reached about a 3 level and would peak at about a 5 level during the night while sleeping. dry mouth was an issue but just needed to drink ewater and take some magic mouthwash and back to sleep. 

I only took tylenol and advil at times to assist with the pain but it was manageabke with out them.

Week 6 I took a couple oxycodone at night primarily to help with sleeping but it did help a bit with the pain...which was still around a 5 at it's worse.

I did develop a sore on the right side of my tongue but that was expected as It rubbed against a dental fixture and I figured it would be an issue. Hurt to talk at times

Mucositis was hit and miss. nothing choking or gaging me. very tolerable.

Taste buds remained about 50% throughout. due to the fact that they only hit my right side with the pencil beam. 

I didnt need any dental floride treatments or have metal fillings or cavities/teeth remove. Doc said thatls one of the big advantages of this therapy. I brush my teeth 3 times per day and swish saltwater and baking soda up to 6 times per day. 

Eating solid food became more challenging around the end of week 4. I found that eating in the bathroom with the shower running on hot steamed up the room and also soothed my throat so that I could eat more comfortably. I told my wife this and she smiled and said..."great, now we can have naked picnics in the bathroom!"

I'm now 7 days post reatment. this has been the hardest time I've had so far. Mostly because of the burns to my neck. I'm fair skinned and it really started to take it's toll at the beginning of week six. I've done/tried all the suggestion you all have made but it seems the best for me has been silver sulfadiazine cream...multiple times per day. and at night before bed and mornings when I wake up I remove the cream..very painful and then add a soaked cloth with water and white vinegar for about 15 minutes. then reapply the cream ...which is immediatly soothing and brings the pain from the burns down fron an 8 to a 1. Additionally my throat pain and mouth sore pain is a constant 4 or 5 but manageble when I take some tylenol and ibuprohen and magic mouthwash. All of this was expected and told to me by my doctor.

Let me say a few things about my care team. Mayo is a CLASS act. My doctor is the Chair of the dept and he (out of 6 doctors I visited from other institutions) was the only one to give me his business car WITH his personal email address. I had probably emailed him over 50 times during my treatment course as well as before treatments and he always responded usually within 6 hours. He worked his butt off to help my insurance cover this therapy. And I repeat...He is the chair of the entire Mayo Oncology dept. which means...he has alot of more importand $@&# to do than answer piddly questions I have about a certain side affect I'm dealing with.  Remarkable! The entire support team was extremely helpful and accomodating. Much appreciation.

Doc say's the neck should start turning the corner and healing next week. he said the throat area will be another few weeks and then start seeing weekly improvment. 

I know that we all have options. we all have reasons for why we chose the treatment plan we did. none is better or worse than the other. I did my research and listened to my gut and chose the treatment option I chose that I felt was best for me based on my condidtion. My story is only here to help many of those who are entering this scary uncertain world of HNC and are looking for testimonials/ideas/stories/options. My journey is far from over...the real proof of my treatment will be in the coming months and years of follow up tests and scans. I'm cautiously optimistic and hoping for the best!! Good luck to all of you here and all of you lurking in the background...doing your research..like I did behind the scenes.!

Did I mention that we have six kids still under our roof? 17yo boy, 16yo boy,15yo boy, 9yo boy and twin 8 year old girls (our surprise babies) YES our house is a crazy madhouse. We chose to tell the older boys very early on about my cancer. the littles learned about it last week. I couldnt hide the obvious physical side affects from them.(neck burns/lost 40 pounds/trouble eating foods etc). They are all troopers and handling it very well. as a matter of fact they now enjoy telling "everyone" that I have/had cancer. to the point where I have to draw a line and make sure they ask me first. LOL. So...If I dont get back to any questions anyone might have for me....I have an excuse...busy with all these bodies. 

 

cheers for now!

 

Skidog

 

dalaitom

Congratulations on finishing

Congratulations on finishing treatment.

I was considering protons but I had waited to pursue it until right before I was scheduled for IMRT to start. However, the process of getting insurance approval was taking so long that I was getting anxious about not getting any treatment at all started. Luckily, I found a clinical trial that offered many of the same benefits of protons and insurance approval was no longer an issue and they could get started with treatment quickly. I was lucky to have the doctor that was running the clinical trial and he would respond to my emailed questions very quickly and would even answer questions on weekends and all hours of the day. I have one RAD treatment left on Monday and I feel that at this point my side effects are seemingly less than what many others here have experienced. My worst side effects have been from the chemo.

 

skidog

dalaitom said:

Congratulations on finishing

Congratulations on finishing treatment.

I was considering protons but I had waited to pursue it until right before I was scheduled for IMRT to start. However, the process of getting insurance approval was taking so long that I was getting anxious about not getting any treatment at all started. Luckily, I found a clinical trial that offered many of the same benefits of protons and insurance approval was no longer an issue and they could get started with treatment quickly. I was lucky to have the doctor that was running the clinical trial and he would respond to my emailed questions very quickly and would even answer questions on weekends and all hours of the day. I have one RAD treatment left on Monday and I feel that at this point my side effects are seemingly less than what many others here have experienced. My worst side effects have been from the chemo.

 

yes...IMRT

was my 2nd option had insurance denied Proton. I was very comfortable choosing IMRT if needed.  Very happy with Proton. eating everything again(except spicy and acidy foods) two and a half weeks post rads. 70% taste back. no pain meds. swallow is good. dry prickly throat at times especially at night. Neck burn is 90% back to normal. feeling great...lost 52 pounds though...but needed to lose most of it. Thankful for the folks I learned from on this post while going through treatment. Taught me how to be a good patient through treatment and recover faster.

wbcgaruss

Congratulations

Thank you for the detailed description of your cancer journey. As we read it, it brings back memories for many of us of the involvement, treatment and time invested to fight this disease. Very involved from beginning to end and takes over our lives for a time. May God Bless you for the rest of your life cancer free so the time goes to your Wife and Children. Reading your story really gave me a picture of what you went through and it was quite a quite a haul but you persevered and made it congratulations. Now final recovery and back to living life.

OKCnative

Glad you found a treatment

Glad you found a treatment and team that worked for you!

As for the lifestyle changes. While I think most would agree you're not going to 'cure' cancer by eating 'right' and exercising, I am a 100% believer that doing those things and living an active, healthy and positive lifestyle greatly improve the success rate and endurability of treatment. The fact I went into treatment very healthy and maintained a 'normal' lifestyle and positive outlook made this entire experience only a minor bump along the road of life.