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.

CyberKnife treatment plan for nasopharyngeal carcinoma

Oct. 2009. CyberKnife treatment plan for nasopharyngeal carcinoma.

Healthcare, insurance, and doctors

Sooner or later, when dealing with cancer treatment, not only are you battling cancer, you will probably need to battle your insurance company or doctors over health coverage. Unfortunately, it's usually sooner. Fortunately for me, I've had great support from my doctors and my insurance company.

Insurance company paid the radiologist the contracted rate. The doctor is now billing me for the difference. Is that legal? What can I do? What is wrong with health care in the US. And all this with excellent health care coverage.

Another month, another nasal endoscopy

As he does each time I see him, my ENT performed another nasal endoscopy today. He said the nasopharynx still looks red from possible inflammation but the area is more and more concave, which is good and normal.

He has ordered a MRI for the head and neck. I see him again next month, when we will make a decision on a possible biopsy of the nasopharynx.

I continue to cough up bloody phlegm each morning, which is probably a semi-permanent side effect of all the radiation I've had (IMRT and CyberKnife). My ENT says he has one nasopharyngeal carcinoma patient who continues to have bloody phlegm three years post treatment.

Happy Valentine's Day to my wife! I love you.

An excellent article on surgery for recurrent NPC http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1656473/pdf/skullbasesurg00028-0005.pdf with comments by Dr. Fee at Stanford.

Post-treatment imaging of the nasopharynx:

http://www.ncbi.nlm.nih.gov/pubmed/12413677?dopt=Abstract

Another PET scan, no more Erbitux

My medical oncologist stopped the Erbitux chemo after two sessions because the rash was so bad. We planned for twelve weeks of Erbitux.

Last week, we had another PET scan. The report showed that there is still a mass and activity (SUV of 3.1) in the nasopharynx. From medical journals I have found, this could very well be a false positive as residual mass might be inactive tumor.

One option is to take a biopsy now, but my CyberKnife radiation oncologist recommended that we wait at least one more month especially since I am asymptomatic. We will run another PET scan within the next 1 - 3 months.

Happy new year!