Can you hear me now?

No sinus surgery as my sinus seems to be behaving much better.  And my PET scan last month was all clear.

However, my voice is gone not because of post nasal drip but because my right vocal cord is paralyzed.  ENT make a referral to a speech therapist so I'll have to learn how to speak again with only one vocal cord. The nerve that controls the right side of my tongue is also not moving my tongue so well, which makes the simple things like chewing and swallowing difficult.  I have to eat slower and with smaller bites.

I promise to no longer scream at you.  You are welcome.

Radiation-related cranial nerve palsy in patients with nasopharyngeal carcinoma

Ethmoid sinus, allergies (or sinus infection), and no voice

First, I'm happy to report that my neck pain from the scar issue is completely gone.

For the last two weeks, my ethmoid sinuses have been acting up again.  Six to eight months ago, I could not breathe at night due to the congestion.  The last two weeks, it's not only at night but all the time.  And due to the post nasal drip, I have now lost my voice even though I feel tons better after starting on claritin about ten days ago.  I see my ENT doctor in a few weeks.  He will probably recommend surgery as he did six months ago.

And lastly, I now have ptosis of the right eye.

Another great NPC article: http://www.hindawi.com/journals/ijol/2011/638058/

Neck pain update

Cool NPC story: http://www.newfaceofcancercare.org/stories/380

For ten weeks now, I haven't been able to sleep at night due to the pain in my right neck.  At times, I'm not able to turn my neck without considerable pain.  I have even struggled with swallowing and speaking, especially "b" and "v" for some reason.

But this week, the pain is 1000 times better.

Hopefully, the scar tissue is finally fully developed.  And speaking seems to be better now.

My hearing has not improved much in the right ear, but the ringing (from chemo and/or radiation) is considerably less.

28 months later

Had a PET scan last month.  It was clear.  Oncologist agreed to stop chemo.  Fuck you cancer.

I developed a nasty sinus infection in my ethmoid sinus, which meant I couldn't sleep on certain nights.  ENT prescribed cefuroxime and metronidazole.  Much better now.

It is now four months post CyberKnife and my right neck is developing a painful scar tissue at the exact location of the CyberKnife treatment plan.  Hopefully this will eventually disappear.

I continue to see my doctors for regular check-ups and scans.  Life is such a wonderful gift.

Last day, cycle 3

Gemzar only today.  Platelets down to 82 yesterday so we got blood work again today.  Platelets at 71.  Gemzar will be reduced to 75%.

Done.

I need a nap.  This last cycle has not been fun.  Nausea pretty much all the time.

Start of third cycle

Today is the first day of cycle number three.  Cisplatin and gemzar.

Looks like we will be doing four cycles instead of three, which means chemo for Thanksgiving and Christmas!

Platelets have been pretty normal the last two weeks, surprisingly.

Happy holidays.

Week 2 of cycle 2

At the infusion center now.  Almost done.  Today, cisplatin and gemzar.

Platelets up to 364 this week.  Perhaps all the red meat is helping.

Cycle two

Today was the first infusion of cisplatin and gemzar for cycle two.  Full dose as my platelets are up to 256.  The infusion took four hours and was uneventful.  I even fell asleep a bit as I tried to do some work on the laptop.

Take a couple of minutes to watch this video:
http://www.ted.com/talks/stacey_kramer_the_best_gift_i_ever_survived.html

Do I wish I didn't get cancer?  Every single day.  Do I think it was a gift and has it made me a better person?  Yes and hopefully yes.

Platelet update

Saw my oncologist today.  Platelets are up to 69.  No platelet infusion needed.  Thank goodness.


Cisplatin and gemzar will continue with the second cycle next week.


Platelets:
08/25 164
09/21 163
09/28 105
10/04 60
10/12 34
10/15 69

Rest week

No chemo this week.  It's my rest week.  First round of gemzar and cisplatin complete.  Platelets are down to 34.  Hopefully I can recover by next week.

The skin on the back of my neck is starting to peel.  I feel confidant that we hit the neck node pretty hard.

Nasal congestion has gotten pretty bad with flu like symptoms but no fever.  It's bad enough that I cannot breathe at night to get a good night's sleep.  Thank you gemzar.

Platelets:
08/25 164
09/21 163
09/28 105
10/04 60
10/12 34

Chemo:
09/22 cisplatin + gemzar
09/29 cisplatin + gemzar
10/06 75% gemzar
10/13 rest week

Five weeks post CyberKnife

Well, looks like X marks the spot. Radiation burn, five weeks post CyberKnife.

Week 3, infusion 3

I'm in the infusion center.  Today is the third and last infusion of round one.  I'll be receiving only gemzar today at a 75% dose as my platelets have dropped to 60.  My infusion nurse mentioned if the platelets drop to 10, they will have to give me a blood transfusion.  Hopefully with next week off, my body can recover.

Chemo, day one

Day one was not very eventful.  Thank goodness.

Gemzar and cisplatin.  I had cisplatin two years ago during induction chemo before my first radiation treatment so I know a bit of what to expect in terms of side effects.  The Gemzar is new to me.

I didn't know how many cycles my medical oncologist had planned until today when I bumped into her at the infusion center before the start of chemo infusion.  She said to plan for four cycles.

One cycle is one month.  I get chemo weeks 1, 2, and 3.  Week 4 is a rest week.  Weeks 1 and 2, I get gemzar and cisplatin.  Week 3, only gemzar.

The gemzar infusion takes only 30 minutes IF it doesn't burn your vein in your arm when it goes in.  Of course, for me, it burned like heck so my nurse slowed down the infusion.  That helped a bit.

The cisplatin infusion takes 3+ hours and requires that I keep going to the bathroom to empty my bladder.

Joy.

Nick Narcisse

http://www.chron.com/disp/story.mpl/sports/hso/7206781.html

CyberKnife treatment plan, right neck

September 2010

Chemo

CyberKnife went well.  The right side of my mouth is a bit raw.  Chewing and eating have been difficult for the last few days, but I won't complain too much.  CyberKnife is amazing technology.

We will be moving forward with chemo.  This was possibly the hardest decision of my life since we don't have any data to suggest we absolutely need chemo.  But that 1 possibility out of 100 or 1000 is enough for me.

The protocol my oncologist emailed to me is identical to this study:
http://annonc.oxfordjournals.org/content/13/8/1252.abstract

Every 28 days: gemcitabine (gemzar) on days 1,  8, and 15;  cisplatin, days 1 and 8.

Today, we officially made it to 2 years.

CyberKnife for the neck node

I saw a new radiation oncologist.  She decided not to treat me since they have not done any stereotactic radiation therapy cases outside of the brain but recommended that we go back to my CyberKnife radiation oncologist if we decide on additional radiation.  My insurance approved, and today was my first CyberKnife treatment of five total treatments.   I love this technology.  We spent all afternoon last Friday getting my mask, CT, and MRI scans done.

My PET scans have been showing questionable activity around the nasopharynx, the last in June.  However, last week's PET scan showed activity only at the neck node, which we are currently treating with CyberKnife.  I have never been so happy to find out that I have cancer.

After CyberKnife, we may still consider additional chemo even if the PET scan is completely clean.

My CyberKnife doc has already warned about possible skin burns due to treatment being so close to the skin.  I'll be posting a picture of the treatment plan online soon.

I almost forgot.  My ENT called a few weeks ago.  He asked the pathologist at the hospital to perform additional tests on the biopsy samples from July.  The biopsy was positive.

More radiation

Third time is a charm?  Looks like we are going in for more radiation.  This time to a level 2 neck node.  I would love to use CyberKnife again given my favorable experience the first time with the technology, but because of insurance, it looks like we will be using the Trilogy System for additional stereotactic radiosurgery, at another hospital.

Surgery for the neck node is possible but not recommended by my ENT given my previous neck dissection surgery to my right neck.  My quality of life would be very poor.

We attempted to biopsy the neck node using ultrasound guidance in my ENT's office, but the results of the biopsy were inconclusive.  My doctors all think the PET scan, in our case, is sufficient to suggest residual cancer in the neck node.

My medical oncologist is holding off on chemo until after radiation.  We may avoid chemo if the PET scan is clean after stereotactic radiation therapy.

A few weeks ago, my ENT finally placed a ear tube in my right ear. I can hear much better now.

Scans and neck biopsy

Last month, I had a PET/CT scan of my whole body, a MRI scan of the head, and a regular CT scan of the neck.  The MRI showed something at the nasopharynx close to the base of skull that was not there on my previous MRI, but that same area does not show activity on the PET scan.  The PET scan does show activity on a level II neck node, which my ENT will attempt to biopsy this week if we can find it on the ultrasound.

Depending on the results of the biopsy, we may need further treatment, perhaps more radiation and chemo but hopefully no more surgery.

Hope you had a great Fourth of July.  I did, spending it with my family and "running" a 10k with my wife!

Residual mass in nasopharynx, no biopsy

Two weeks ago, I had another MRI of the head and neck. This week, we got the report from the radiologist. My ENT and the radiologist agreed that the best thing for now is to repeat the MRI every three months for the next two years to closely watch the residual mass. For now, we believe the residual mass is granulation tissue. No biopsy.

I'll continue to see my ENT once a month.