Johnny 5 ~ New Thread...

For Johnny 5

Really, it's not about the money. It's about hitting the cancer as hard as they can, because right now, what you have CAN be completely cured... and if it returns, it will be incurable, and will most likely take your life within a couple of short (painful) years.   What you have is very like what I have, and what everybody else here has or had.

The treatments being proposed are the same as all of us have gone through.  We are on the same first name basis with Emend, Zofran, Ativan, Compazine... three rounds of Cisplatin (aka 'the raging bull') and nasty radiation burns to the tongue, throat, neck et al.  Many of us also had the feeding tube.

We all have various long term effects.  Will this change your voice; yes, very likely.  Will this screw with your thyroid, salivary glands, ability to swallow... yes. 

You have a very important decision ahead of you. Some of us here, for various reasons, chose to decline various treatments.  Only you can choose for yourself.  Personally, I chose the path that would most likely result in a complete and permanent cure.

Deb

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Start a new thread of your very own...introducing yourself and throwing your questions out there....this is a very knowledgable and supportive group....and will be more than willing to help you out.   You'll get a lot more responses that way.

I had 35 rads and 6 chemos....starting in April of 2012 lasting till August 2012, was back to work in October.  Funny how most of us think about our jobs first...and amazing how many employers get behind the cancer patient.  Like Deb said, you need to make some decisions here.....in my opinion, death would be the real career ender....

p

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Hi John,

Welcome to the boards. Sorry we have to meet under these circumstances. 

Our stories are quite similar. This will probably be a long post because I want to share my expeience as I feel it will help. Our Dx are a little different I'm Tx N2b MO Stage IV. They were unable to locate the primary site and I had surgery twice to remove tonsils (palatine and lingual) as well as a selective neck dissection to remove the tumors (2@4+cm along with 24 lymph nodes).

 

We're almost at the same point in our journey as I have my first treatment March 13th (simulation rad run with the 1st run the 14th). I'll be getting 35 radiation treatments and 7 chemo infusins (Cisplatin). I had to be cleared by my dentist as well. Fortunately I only had to have 1 extraction. I am aware and prepared to have dental issues afterward but I'm hoping that a very attentive dental hygiene regiment wil minimize this. 

 

I had my appointment with "current" Radiation Oncologist a couple of weeks ago prior to getting the mask made. While we'll be irradiating a broader area in various strengths due to my unknown primary situation, they wouldn't be irradiating my larynx (two seperate laryngoscopies showed everything normal). He was up front concerning throat pain but assured me that my voice would be spared. I will be hoarse and swollen and there will be some swallowing issues to deal with, but he fully expects my voice will return. I would definitely discuss this aspect. Because of the pain I've had with my throat after surgery (pretty bad even now and still on a soft food diet), he's recommending a feeding tube as insurance. 

I have my appointment with my Medical Oncologist a few days into rad treatments. It will take 4-6 hours for chemo infusions. Side effects from chemo drugs can affect hearing, site and other functions so it doesn't surprise me about the tests. Laxitives are a necessity as pain meds constipate you. Anti-nausea drugs are necessary as the chemo will make you sick. Concerning the cost? There are many that are generic and just as effective. There are also programs that help patients get expensive drugs at a discount or free. Ask the cancer social worker about those programs. They say (and its true) that it's easier to stay ahead of the pain and nausea than to play catch up. I take that advice to heart.

What you and I share the most in common is our voices. I work in the sales and marketing field in the music industry and I, like you, speak to make a living. I'm am literally the voice of the company, speaking on the phone every day and doing seminars and conferences. I'm also a musician. I played and toured professionally most of my career. I recently came out of retirement and started playing again solo locally. I've been quite successful and I gain much joy from performing, more so than I did when I played full time. So as a part time career, it's been a huge positive in my life as well as lucrative. Like you, I fear the ramifications of radiation. What would I do if I lose my voice? The fear is legitimate and quite real. 

 

I will say three words concerning a 2nd opinion... YES...YES...YES!!!  The very fact that you're asking that question warrants a 2nd opinion and I'm glad to see you're doing it

When I started my journey, I was seeking treatment locally here in Virginia (Winchester). I had an ENT (who did the first tonsillectomy and biopsy), a Radiation Onclogist and a Medical Oncologist. They did not operate as a team. It all seemed disjointed and there was a lack of communication. Everything that happened just didn't "feel" right. Because of that I sought a 2nd opinion at Johns Hopkins which is two hours from me. They are one of the best comprehensive cancer centers in the US (the other hospital by comparison was not an accredited cancer center scoring only 24.7/100 nationally).

I made my appointment and they gathered all the test results from the labs and hospitals prior to my arrival. I had several people from the hospital contact me prior to my arrival making sure everything was in order and asking questions as well as answering mine and addressing my concerns. When I arrived I was taken to an exam room and within minutes an entire "Team" of doctors and specialists came into the room. A Radiation Oncologist, a Medical Oncologist, a Surgical/ENT Oncologist, a Language/Speech Pathologist, an Oncology Nurse Practitioner/Manager and the Coordinator of the center. They all were in sync with my history and records and all knew the results of my tests. I was poked, prodded and examined more in 25 minutes than I was the entire time I was at Winchester. 

Upon review of the radiation treatment, they were opposed because it would have serious ramifications to my voice with potentially irreversable damage to my vocal chords. Based on the size of my tumors, they were surprised that surgery wasn't the first step. I asked these questions when I met with the local doctors and did not get straight answers. I was not told the entire story. At Johns Hopkins, it was an entirely different approach and you could feel the air of confidence in that room. 

I had another incident that took place locally but I've written quite enough ~lol~ Needless to say the decision was a no brainer. Confidence in your "Team" is essential to your confidence and positive mental attitude. Seeking that 2nd opinion will give you peace of mind and voice.

Positives and prayer concerning your journey. This is a great forum and the folks here are amazing. Keep us up to date on what's happening. Best wishes.

"T" 

PS... this would be good to put as a new thread... I think John (Skiffin)is able to do that.

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I want to refer you to what they say in the great state of Oreagn. You know what that is? Me either point being, with the fear of the unknown definately get the second opinion. Better to do it, than to second guess it later. Certainly you want to prepare yourself for every symptom related to the tough task of ridding yourself of cancer. We all react differently to treatments and although I never had to do chemo I did have an extended stay in the operating room and made many friends traveling over 140 daily for radiation and I can tell you it was all worth it. My doctors (the ones I chose to treat me) always quoted me statistics along with their recommendations so I put my life in their hands which resulted in me being able to address you today. I did and still today have excellent health care coverage but never hesitated in doing something that involved an out of pocket expense. All along I knew my trademark voice was going to be jeopardized as it most definitely was but after 3 years it is still making a comeback. My job requires speaking publically and I was scared to death of how people would react both the ones who knew me before my cancer ordeal along with the new ones I met afterwards. I even volunteered for speaking engagements related to my work to build up my confidence allowing me to feel comfortable with whom I am today.  My point is, get rid of the cancer at any cost it makes life worth it. I wish I knew about this website while I was going through treatment, there are some wonderful people  here that can get you through it all.

Enjoy the day…………….I do……………..every one of them

      Jeff

 

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