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Soulshine1960

Hi. I was just diagnosed with stage IV tonsil cancer. It has not completely sunk in yet. Everything is coming at me so fast. They say I will need both radiation and chemo. Just got appointments to see those doctors. I live 4 hours from university of michigan hospital, where I am planning on getting treatments. I have thought about moving. Not sure if that would be best or if doing this long distance. What are some of your experiences with this? 

CivilMatt

welcome,

Soulshine1960,

Welcome to the H&N forum, sorry that you are here and it sounds like you’ve got your diagnosis (oh boy).

There are members who set-up shop at the hospital or city in which they are getting treatment. Some hospitals have residences for just that sort of thing.  Some make the trip back and forth.  If you have to drive, I would lean toward staying there. If you ride and find your home base a peaceful sanctuary, I might go for the ride. For some, the treatments are quite difficult and the thought of a 4 hour ride or drive may pose an impossible task.  Others can sleep through the ride.  And then there is the once in a blue moon member which handles the treatment side effects like another daily chore (lucky, but few).

I rode 11 miles, no biggy.  I had to take 1 Lorazepam prior to wearing the mask, so I wasn’t at my finest for driving.

To this day 5 ½ years post, I still find it hard to believe what I went through.  I had no hint, no pain, no indicators that I was aware of until a lump on my neck, stage IVa, scc, bot, 1 lymph node, hpv+ (surgeru, Erbitux  & rads).

Good luck,

Matt

Engelsa

I can share our experience

Hello Soulshine1960

I am very sorry for this diagnosis. You can do this treatment and beat this cancer. My husband was treated at University of Michigan Hospital for Stage IV Nasopharyngeal Carcinoma (NPC). He had seven weeks of chemo/radiation. My husband participated in a clinical trial for the treatment of NPC. We chose to reside in Ann Arbor, MI during his treatment. I was grateful that we made that choice as my husband really needed to focus on doing his best during treatment. Your strength and energy are compromised during treatment. I personally think he fared much better due to the fact that he concentrated on his health. He did not have to use strength and energy for trips back and forth each day.

The University of Michigan has patient accommodations for radiation patients. It is very helpful for the patient. This also makes hydration/dietary treatment much easier as well. You can look up the numbers to call for this service on line.

I wish you the very best during and after all of this. 

Please reach out if you have more questions about our experience at the UofM Hospital.

I also hope your Medical Oncologist is Dr. "Paul" S. He and my husband are two of my favorite cancer warriors.

One last thought: All Head & Neck Cancer patients are "My Heros". You can do this!

Sara

soonermom

Commuting

We lived about 3 hours from the Cancer Center.  I needed to continue to work to maintain our insurance.  It is wonderful to hear that your center provides accomodations.  We were only offered small discounts at hotels near the center.  It was still expensive.  We decided to use VRBO.  We were able to find a lovely house and negotiate a rate with the owners for the entire treatment time frame.  Because we did not need it on weekends, it allowed them to have a guaranteed weekday renter and they were happy to negotiate.  Also, because of my need to continue to work we had a frank conversation with the treatment team.  They were able adjust his radiation schedule to allow us to be on a Mon/Tues, Thur/Fri schedule.  We came for the last appointment on Mon/Thur and had the first appt on Tues/Fri.  There were a few days when his chemo schedule modified that but mostly for 7 weeks that is what we did.  We really felt refreshed by sleeeping in our own beds, being with our support system and my husband did work during some of his treatment schedule.  I would literally drop my husband off at home, drive straight to work and work either a full or half day depending on the schedule. I think each patient and caregiver have to work out what is best for you when you are facing such a long distance.  There honestly is not an easy answer.  We did get some of our blood work, fluids etc at home to make it all work.  I know you are in shock and there is so much to process.  I did almost all the driving as within a few weeks driving long distances was not a good idea for my husband.  You will figure it out.  There is a lot to think about but please know that you can both make it through even thought it will be hard.  Courage and strength.  

Soulshine1960

Thanks for sharing

Thanks for sharing experiences. We are planning toward staying in ann arbor during treatments. Still trying to decide if my husband and i want to move into new apartment before treatments. My son is in college at Eastern Michigan so he would be close by and that is something that would be important to me. But at the same time, I would leave my other family behind, my mom and brothers. It would be long trips for them to visit me.

I feel U of M is the best place for me to get treatment. Just want all the support I can get.

Klingels

treatment

We live 30 minutes from the treatment center. By the second week, my husband was no longer able to drive. When treatment was done, all he wanted to do was come home and rest. Chemotherapy weeks were especially hard. My husband received Cisplatin 3 times over 7 weeks. Starting from the moment we walked in the door and for 3-4 days afterward, he fought nausea and illness. He could barely get out of bed. He ended up getting intravenous hydration. As you don't know how you will be affected, the closer to treatment the better.

DarcyS

Traveled to treatment

We live 2 1/2 hours from U of M and U of C.  We choose U of C and did travel.  On the inpatient weeks, I stayed in my husband's hospital room and the off weeks, drove him to his appointments in Chicago(1-2 times each off week).  I realize your drive is longer, but my husband did enjoy his off weeks at home.  We put a lot of miles on the car, but would make this choice again.  Best of luck as you begin this journey.

 

Dean54

Like you, I was just

Like you, I was just diagnosed and should be starting treatments next week but I'm lucky enough to live fairly close so I can drive myself if need be. Yes, you will have a wirlwind of appts. coming up and still can't believe it's happening but let's hope we can all get thru this and be ready for a happy spring next year disease free.

Nelsonator

Closer is better

i went to atlanticare for my radiation and checkups. They have their own van for transportation if needed. The doctors and staff were great too. try and find a closer place. Best of luck. 

nikolaf

Good luck to you....

Good luck to you....

Maximus10000

CivilMatt said:

welcome,

Soulshine1960,

Welcome to the H&N forum, sorry that you are here and it sounds like you’ve got your diagnosis (oh boy).

There are members who set-up shop at the hospital or city in which they are getting treatment. Some hospitals have residences for just that sort of thing.  Some make the trip back and forth.  If you have to drive, I would lean toward staying there. If you ride and find your home base a peaceful sanctuary, I might go for the ride. For some, the treatments are quite difficult and the thought of a 4 hour ride or drive may pose an impossible task.  Others can sleep through the ride.  And then there is the once in a blue moon member which handles the treatment side effects like another daily chore (lucky, but few).

I rode 11 miles, no biggy.  I had to take 1 Lorazepam prior to wearing the mask, so I wasn’t at my finest for driving.

To this day 5 ½ years post, I still find it hard to believe what I went through.  I had no hint, no pain, no indicators that I was aware of until a lump on my neck, stage IVa, scc, bot, 1 lymph node, hpv+ (surgeru, Erbitux  & rads).

Good luck,

Matt

I was diagnosed June 6, 2017

Me too, BOT SCC stage 4a HPV 16 Positive.  I did 6 rounds of Cisplatin and 35 radiation.  I am now just 2 weeks out of Treatmen.  Holy crap that was hard!  I'm 58 year old male, non-smoker, been married to my beautiful wife 27 years.  I have a feeding tube (Thankfull) because I can't swallow.  In swallowing therapy now.  Reading all of the other posts it's apparent this recovery is very slow.....that's what makes it so much harder.