Can you hear me now? Can I hear you now?

PET scan from earlier this year was unremarkable. My right vocal cord is still paralyzed, but my voice volume seems to be getting better or I have learned to better control the muscles. Shortly after my ear tube dislodged in March, I found out I now have a perforated ear drum. Joy! And yesterday, I added a right hearing aid so I can no longer pretend to ignore you, but I will still blame it on the hearing aid. See you soon.

Biopsy results

First biopsy was negative. Second biopsy, image guided, was also negative. We still do not know what is causing this lump in my neck. Another PET scan in 2 to 3 months.

Fuck me. Again.

Three new areas of activity on PET scan since late June, one in the jaw, one in the lower right neck, and right medial pterygoid muscle. Biopsy today on one of the lumps in the neck. Results next week.

Annual PET/CT scan

Annual PET/CT scan was all clear. I continue to speak with just one functional vocal cord, my left side. The sinus infections have cleared also. Life is awesome!

New friend and small update

David, you are in my thoughts: http://www.columbiamissourian.com/stories/2012/02/02/mu-professor-documents-cancer-battle-online-videos/

More on David: http://www.huffingtonpost.com/david-casarett-md/patients-courage_b_1260330.html

My last sinus CT scan in December was unremarkable. The coughs still continue, my voice is still the same, life is as normal as it will be for me.

I've developed a sinus and ear infection that put me out of work for a few days. That was painful, mostly on the left side of my head.

This seems very promising, targeted therapy for NPC: http://www.news-medical.net/news/20120202/Blood-cell-therapy-works-for-nasopharyngeal-cancer-Study.aspx

Happy new year.

Respiratory culture

Positive for Staphylococcus aureus. Starting cephalexin today. Perhaps this infection is the cause of my cough and post-nasal drip. Seems common for NPC patients: http://dribrook.blogspot.com/2010/12/sinusitis-after-irradiation-therapy-for.html

Other than that, my check-up with my ENT last week was uneventful. I'm scheduled to get another CT scan of sinus just to make sure things are clear up there. I'll see my doctor again in three months.

Happy holidays.

Return to normalcy

I may need you to speak for me, to lift something for me, to wait on me while I slowly chew my food. This is now my normal way of life, often a burden to those around me, especially loved ones. For that I am sorry.

This phase may be perhaps the hardest part of dealing with cancer. Nothing I do can change what is.

To inject or not to inject

That is the question.

I saw my CyberKnife radiation oncologist today. Since my last two PET scans were clear, I no longer need to see him. He recommends that I get the vocal cord injection for my vocal cord paralysis.

We have made it three years. Let's go have a beer. I'm buying.

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.

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!

Erbitux rash, continued

No chemo this week or next. Doctor prescribed some minocycline (100 mg), which I take twice daily. Not really sure that's helping any, but for sure, the topical ointment did absolutely nothing.

We didn't even make it to week 3 of week 12 of Erbitux. I'm not sure I can take 10 more weeks of this chemo. I struggle sleeping at night because the rash itches so much. I want to ask my doctor to stop. I get the feeling she doesn't want to stop. Not yet. What do we do. What do we do.

Erbitux rash

The rash from Erbitux started four days after the first infusion. It wasn't too bad until two days after the second infusion (9 days post first infusion).

The rash is now all over my chest, face, and back. Not only is it disgusting to see, it's painful to the touch, it bleeds if the rash is disturbed, and the topical ointment prescribed does absolutely nothing. Thank you mouse protein and chemo. I guess I'm very much allergic to this chemo.

There is blood all over my pillow when I wake up in the morning. It feels like a million needles pushing into my head from my hair follicles pushing into my scalp.

I'm calling my medical oncologist tomorrow to see if we delay treatment or stop this chemo altogether.

Here we go again

Erbitux chemo infusion started yesterday. The first dose will be the strongest with the remainder infusions not as strong. I will receive weekly infusions for the next 11 weeks.

Hope is that the side effects are not as bad as the platinum drugs I received this time last year.

Erbitux

Chemo starts next week and will last for 12 weeks. Infusion once a week.

So not looking forward to it. But my long term survival could depend on me finishing this course of chemo.

Radiation treatment options

There is a lot of confusion, even among doctors about CyberKnife vs. Gamma Knife. Here is an article that explains the differences very well:

http://www.incapitalhealth.co.uk/2009/11/cyberknife-and-gamma-knife-radiosurgery-–-what-are-they-and-what-are-the-differences/

Neck dissection, post-op

Nine days post-op, I had half of the over 40 staples removed. At thirteen days post-op, I had the remaining staples removed. My neck is still very tight and will continue to be so for a few weeks as the scar tissue underneath the skin forms.

My doctor removed from my right neck 30 lymph nodes, a 7 cm section of my internal jugular vein, part of the sternocleidomastoid muscle, and some salivary gland tissue. The pathology reports shows cancer only in the one lymph node which tested positive in the PET scan three months ago.

I'll be returning to work next week.

Modified radical neck dissection

I'm home. After eight hours of surgery and three days in the hospital, it is good to be home.

CyberKnife treatment

Last Friday, I finished my CyberKnife treatments for residual nasopharyngeal carcinoma. Each treatment was one hour and fifteen minutes for a total of five treatments in five consecutive days. I had to be perfectly still with my radiation mask on, although you are allowed to bring in your own music which really helps. That probably was the hardest part of the treatment, being still. I had absolutely no side effects until the fourth day or so with a slight headache and a bit of dizziness.

Total treatment was 40 Gy. My first round of radiation treatments with IMRT was 70.2 Gy. I think I should glow in the dark by now. But CyberKnife is amazing in that it doesn't hit much of the surrounding good tissue with much of any radiation, unlike IMRT, and the radiation comes into your body at between 100 and 250 different angles.

Yesterday, four days post-treatment, my nasopharynx started feeling pretty raw. It now hurts like the worse sore throat you have ever experienced times ten! But compared to the effects of IMRT, this is nothing. I can still taste food, and I have some saliva.

Neck dissection surgery will be in two weeks. The positive lymph node in my right neck is already slowly getting bigger. I cannot wait to get it out. After surgery, we will probably be doing more chemo just to make sure we got everything. Fun!

What a crazy journey, but I'm not going to let cancer win.

Pre-treatment for CyberKnife

Pre-treatment scans, MRI and CT, and planning will be done this week. CyberKnife treatment will start one week from tomorrow.

CyberKnife

No, CyberKnife is not surgery.

I saw the CyberKnife radiation oncologist today. Looks like I'm a candidate. Now we wait to see if insurance will approve.

He is recommending CyberKnife treatment for the residual mass in the nasopharynx and surgery for the positive lymph node in the neck, followed by maybe more radiation to just the neck area.

Fuck me

Biopsy was positive. I will need more treatment.

Silence

I'm sorry for the long period of silence. A bit of an update.

Two months post treatment, the fluid in the right middle ear finally drained. Being able to hear again is very nice. I thought for sure I would not hear out of that ear again.

Slowly, my taste buds and salivary glands are beginning to work again. I struggle most with tasting salt and sugar, but each day, it does get better. For whatever reason, I can taste beer much more than solid foods. I should start a liquid diet. Yes? I'm also able to carry on a conversation without my mouth going completely dry.

Six months post treatment, my radiation oncologist ordered the PET CT scan. Today, we got the results. There is a hot spot on my right neck that he wants to have a closer look. He ordered an ultrasound or CT guided biopsy. I feel great; this can only be a false positive.

Back at work

Wow, never thought I would say this in my life, but getting back to work has been really nice. It really does help by allowing me to think of something else other than cancer. And working with the guys at work, it feels like I never left for almost six months.

I've already been to see my ENT doctor once, radiation oncologist twice, and medical oncologist once. These visits will get less frequent after the three month scans, which are scheduled for next month.

Thank you for all the prayers we have been getting, all the phone calls, and emails. We couldn't do this without you.

A bit of a scare, some pain, and getting back to work

So a few things happened this week. Last week, the lump on right side of my neck reappeared. I started to get really worried since the first time the lump appeared, both my oncologists were puzzled, and this time, unlike the first time, the lump was quite firm. I made an appointment with my ENT doctor. After feeling the lump, my ENT doctor was pretty sure it was a secondary tumor. He had his nurses order new MRI scans to get a closer look. He then called my radiation oncologist, and they decided to proceed with a fine needle aspiration biopsy of the lump. When he stuck the needle into the lump, all he got was fluid. I asked, "Is that good or bad?" He responded, "It was not what I expected." I was still not sure if that was good or bad. He then proceeded to call the lump a cyst instead of a tumor, and that's when I realized it was good! The fluid was sent to pathology for closer analysis, but I am hopeful that everything is okay. The MRI scans were canceled.

I had my PEG tube removed this week. Before my appointment with my GI doctor, I was fearful that they would remove the PEG tube by yanking it out. And that's exactly what they did. OUCH! Yes, it was painful, but thank goodness the pain lasted only one minute or so. Doctor said the hole should heal by itself completely in thirty days. My stomach will forever be fused to the front wall of my body.

I have been released by my doctor to return to work on March 16. I'm really looking forward to returning to work and seeing my co-workers.

It is done

Radiation treatments are done. My medical oncologist decided to cancel the CT scan originally scheduled for today as the lump on my neck has mostly disappeared.

I'm going to rest now.

Back on track

Yesterday, my radiation oncologist, seeing that my skin has healed nicely (aloe gel) in the one week away from radiation, said we could proceed with the last six rounds of radiation treatment. My medical oncologist, who I also visited yesterday, said it was also fine to receive my last round of carboplatin, which I received today. No more chemo! Thank you seems so little to say to the nurses at the infusion center, but before leaving today, I said a big thank you to all the nurses there. They have been awesome!

Last week, towards the end of the week, I developed another lump on the right side of my neck very close to the original site of the swollen lymph nodes. I talked to both my oncologists about it. The site is receiving radiation so there is not more we can do at this time other than to monitor it closely and see what the scans tell us after treatment is complete. I am trying not to worry and hoping that it is nothing more than inflammation from the radiation. My medical oncologist scheduled a neck CT scan for next Monday to take a closer look.

Four more treatments to go!

So close, yet so far

I have six radiation treatments left. This week will be my last full week of treatment. At least, that's what I thought going to the hospital today.

When I saw my radiation oncologist this morning, he did not like what he saw with the radiation burns on my neck. He wants to halt treatment for one week for me to recover (lots of aloe). I was a little reluctant being so close to the end of treatment, but he is the doctor and has been doing this for 37 years so I'm going to listen to his recommendation.

28 down, 11 to go

Just over two weeks left! Starting Wednesday of this week and through the rest of radiation treatment, I'm getting booster radiation treatments -- less volume, 7 IMRT fields instead of the previous 9 fields.

I lost 3 pounds this week, but considering I put on 10 pounds before radiation started, the nurses are happy, and I'm happy that I can continue to eat through my mouth instead of my feeding tube, although everything still taste like cardboard.

My nurses and radiation oncologist are pleasantly surprised that my radiation burns are minimal, primary on the front of my neck. I hope, through the next two weeks, it stays that way, and I can also continue to eat by mouth.

I am hoping my medical oncologist will allow me to remove my feeding tube right after the end of treatment and that she will allow me to return to work soon after that assuming my energy level returns to normal. I have heard for some, it takes a couple of weeks or more.

Monday and Tuesdays continue to be my hardest days of the week as I sleep most of the day and night. Fridays, due to the steroid pills they give me before chemo, I have the most energy, usually not falling asleep until 2 or 3 am. My blood count is still below normal due to the weekly chemo infusions. I wonder how long it takes for the counts to return to normal after the end of chemo.

It is always exciting to see all the people cheer at the hospital when patients are done with treatment. The sad part is seeing new people come in, knowing the fear they have because you have been there, and knowing the journey they have ahead.

23 down, 16 to go

Just over three weeks of radiation left and three more rounds of chemo. I'm so excited! I'm still able to eat through my mouth, which my nurses are pleasantly surprised.

I still have this fluid in my right middle ear, which makes it hard for me to hear, but my oncologist keeps telling me not to worry about it for now. This week, I've developed a mild ringing in the ear also. I hope that's also temporary. I'm fearful that some of my hearing might be gone at the end of all this. We will see or, as in this case, not hear. My jokes are so stupid! Haha!

13 down, 26 to go

13 IMRT radiation sessions down, 26 more to go. Yes! No new side effects to report. I've already mentioned how much not being able to taste things has changed my feeling about the whole eating process. I'm so jealous when I watch these TV shows on the travel channel and the food network, and these guys are eating everything. The food looks so good. Thank goodness there is no smell-a-vision feature on televisions yet. If so, my television would have my teeth marks or at least saliva all over it, the little bit of saliva that I have left.

Today's chemo infusion was the quickest on record for me. In and out in one hour! I met an older gentleman in the infusion center today. We spent almost the whole time talking about Macs since I noticed he was carrying an Apple bag. He mentioned he still uses an Apple laptop that's 8 years old. Dude seriously needs an upgrade. We had identical first generation iPhones. Cool.

I received my feedings for my feeding tube this week. They shipped me six cases of NUTREN® 2.0. These little cans pack 500 calories and are vanilla flavored, which doesn't really matter since through the tube or through my mouth, I cannot taste it. I have yet to try them since I'm still trying to eat everything through my mouth to keep those muscles working.

For my daily amifostine shots that I receive before my radiation treatments, I've asked the nurses to use a bigger needle and to use my thighs as the injection site; definitely less burning sensation than my arms and the larger needle makes the shot go much quicker.

Have a great weekend!

8 down, 31 to go

Two weeks of radiation done, 6 more weeks to go. I cannot wait.

This week, I have developed a stuffiness in my right ear, making it hard to hear. What did you say? Tilting my head from side-to-side seems to make fluid in my ear move around, alleviating the discomfort. I'll ask my radiation oncologist on Monday during our weekly meeting if this is something that I should be worried about or if it's just the tumor responding, hopefully shrinking and dying a slow death.

I've lost some of my saliva and my sense of taste for all things and everything salty. It sucks! Everything taste like, well, nothing! Did I mention it sucks? I can still taste some sweet and sour items, but that probably won't last for long. I've promised Bee and Vance when my taste is back after treatment, we are hitting all my favorite restaurants in town. I cannot wait. Did I say anything about how much this sucks? Sorry, chemo brain. That sucks too!

I've developed some granulation tissue around my feeding tube site. It looks nasty, is a bit bloody, but the GI doctor said it's pretty normal and not to worry too much. Wonderful and often stinky! Just one more thing to worry about. And I'm not even using the tube yet, although I've ordered the feedings, which should be here next week.

Before each radiation treatment, I get amifostine shots. Man, do those shots burn. And the shots are HUGE! The shot is given submucosally, and the injection site has to be different each day. I have been avoiding the stomach area given how much the shots burn, choosing my thighs and triceps instead. I really hope these shots work and save my saliva. I don't want dry mouth for the rest of my life.

My good friend and dentist Tommy was kind enough to make fluoride trays for my teeth, which I use for five to ten minutes each night. Hopefully my saliva returns (thank you amifostine) and I can avoid having to use the trays for the rest of my life. Looking for a great dentist in the Atlanta area, give Dr. Ma's office a call and tell them Mark sent you.

Happy new year!

False start

First, I'm very happy that my ulcer pain this time only lasted two days.

This morning, I visited the infusion center for 2 hours for my infusion of carboplatin, the first weekly round of seven total rounds that I will be receiving each Friday. The carboplatin is easier on the body than the cisplatin that I received in the previous three rounds of chemo. The dosage is also lower so I'll have to visit the infusion center each week, and I'll only receive one chemo drug as opposed to three chemo drugs each round.

This afternoon, we stopped by the hospital for what I thought was my first IMRT radiation treatment. Instead, the technicians only took a few more x-rays to confirm that the simulation scans align with the new x-rays once I'm strapped into the mask which they made last week. The mask setup is definitely tighter than I thought it would be now that the mask is dry and hard.

Since the hospital is closed on Christmas, radiation will start on Sunday. Prior to each treatment each day, I am required to arrive 45 minutes early to get my amifostine shots. The amifostine drug will hopefully reduce xerostomia, which is a very nasty side effect of radiation to the head and neck.

Happy holidays.

Note to self: Remove wallet (credit cards) from pocket before entering MRI machine!

Please go away

I think my ulcer is back. The pain!

I feel your pain

Ezra, I feel your pain.

Heads or tails

Am I glad this week is finally over. While I struggled with eating during the second round of chemo, the third round brought dry sinuses, lots of nose bleeds, and a few sleepless nights during which I attempted to sleep while in the sitting position.

Yesterday, my radiation oncologist looked at my nasopharynx using the endoscope. He said, compared the first time he looked at me, my nasopharynx has "flattened out and things look normal." Awesome!

After my doctor's appointment, the technician made my radiation mask, which I will wear each day during radiation, and CT images were taken, which is used to map the IMRT radiation treatments. I thought the mask would take longer than the five minutes required, which included taking the CT images, and the whole process was relatively painless even though I was strapped down during the process. Radiation treatments will start next Friday, will last eight weeks, and take approximately 15 - 20 minutes each weekday.

The mask turned out to be much larger than I thought it would be and looks similar to the picture below. They placed the tattoos on my mask instead of my neck, which happens for some patients. Wearing this thing, I feel like a mummy.

Round Three and Going Forward

Yesterday was the start of round three of chemo. Round three was delayed one week due to Thanksgiving holiday. Hope everyone had a great Thanksgiving.

So yesterday, I got a 3-hour infusion of Taxol, today a dosage of Cisplatin, and now I'm wearing the portable pump for the 5-FU, with the pump staying next to me for the next 5 days, the same as the first two rounds. I'm a bit excited since this will be the last time I'll have to wear the portable pump. I won't miss it one bit.

Going into IMRT radiation treatments (8 weeks, 39 sessions), which is tentatively scheduled to start on the week of Christmas, I'll only be getting one chemo drug, Carboplatin. Originally, I thought I would get only 3 rounds of Carboplatin spaced 3 weeks apart like the first 3 rounds of my induction chemo treatment, but instead, I'll be getting a lower dosage once a week. That means 8 weeks of radiation combined with 8 more rounds of chemo!

My oncologist wants to see how well my tumors have responded to the chemo so she scheduled a MRI for later this month. For IMRT, I'll go in next week to have a mask made for my head and neck, tattoos will be placed on my neck for aligning the lasers, and using all the data, the radiation oncologist and medical physicists will take one week to run simulations before I'll be the actual genuine pig.

I've read and heard the first two weeks of radiation may not be all that bad. But after that, things might be hell inside the throat especially. I found some inspiration from last week's Top Chef episode where the celeribity guest was diagnosed with tongue cancer. His treatment plan is very similar to mine. Check out this article (http://www.mensvogue.com/food/articles/2008/05/grantachatz?currentPage=1).

PEG tube and ulcer update

What does the PEG tube look like? I've been assimilated by the Borg.



Apologies for not providing an update on my ulcer. It took two weeks after the PEG tube surgery before the pain from the ulcer was gone. Thank goodness it did not take longer.

The whole time, I was quite puzzled as to why the ulcer pain started immediately after the surgery and lead me to think that the pain initially was from the surgery itself. Two days after the surgery, it finally occurred to me that the pain is from the ulcer. But if I had the ulcer before the surgery, why was there no ulcer pain prior to surgery?

On the day that the ulcer pain was nearly gone, I got a letter from my GI surgeon stating he had performed a biopsy on my ulcer to test for Helicobacter pylori, which is associated with 80% of all ulcers. Well, the results were negative, which is good, but the doctor failed to mention to me that he had done the biopsy during the day of my PEG tube surgery. I'm no doctor, but I'm guessing the biopsy may have contributed to the two weeks of pain and discomfort! I thought the doctor did a great job, but perhaps he could have mentioned those minor details to me on the day of surgery.

Round Two Completed

It has been five days now since my 5-FU pump was removed but only two days since I have really been able to eat without any discomfort from all the acid, gas, and nastiness in my digestive tract. The acid was enough to even make sleeping difficult. I'm glad that's now all over.

My AST level last week was back to normal at 16. The ALT level was still high at 78 but that's lower than the previous week. More blood tests tomorrow.

Elevation in liver enzymes

So last week, my potassium level was low but has returned to normal after taking the potassium pills prescribed by my oncologist. This week, my liver enzymes are high.

I'm not sure exactly what this means yet as I have not spoken with my oncologist about it. Does this mean the chemo is damaging my liver?

Epstein Barr Virus (EPV)

Although there is no scientific proof that the Epstein Barr Virus (EPV) contributes to nasopharyngeal carcinoma (NPC), studies have shown that there is a high probability that it plays a role in the development of NPC.

As part of my weekly blood tests, my oncologist ordered, starting this week, the EPV panel in addition to my regular blood work.

Below are the results. Ideally, we would like to see the concentration of EPV decrease throughout my treatment. Data from various studies have shown that a lower concentration of EPV may mean a lower risk of recurrence of the cancer after the cancer is in remission.

Preparing for Round Two

This past Thursday, I met my oncologist for my post-chemo evaluation. She said the elevated white blood count is due to the daily Neupogen shots that I have been receiving, starting the day after my 5-FU pump was removed. There was no need to be alarmed as the Neupogen was doing it's job, but I probably didn't need any of the shots for my first round of chemo. Normally, Neupogen is given starting with the second round of chemo. She adjusted my Neupogen schedule from 10 shots over 10 days to 7 shots over 7 days for the next chemo round.

My doctor prescribed potassium pills to help my potassium level, which had dropped to 3.2 MMOL/L; standard range is 3.6-5.0 MMOL/L. If my potassium level drops too low (hypokalemia), I can become very weak. Also, your muscles, especially your heart, need potassium to function properly.

I mentioned to my oncologist how much pain the ulcer has been. She recommended taking the Prilosec 20 mg twice a day for the rest of my treatment. There is a possiblity that the ulcer was present even before treatment, but the chemo drugs and all the other pills that I took made the ulcer much worse. She cleared me for my second round of chemo, which will start this Thursday.

Ulcer pain continues

Before this ulcer, I don't remember ever having an ulcer in my life, even eating spicy foods would not cause heartburn as it does for others. I'll never forget about this one. The pain continues. I'm taking daily pills of Prilosec as recommended by my GI surgeon at the hospital. It does seem to be better each day, but having the chemo drugs inside my body means it will probably take much longer for the ulcer to heal than normal.

Every Tuesday, I have blood work done. This morning, the nurse knew right away that I didn't drink enough water based on the color of my blood. The blood tests show my white blood count is through the roof.

Component	Your Value	Standard Range	Flag
WBC, AUTO	26.5	3.5-11.0 10*3 uL	AA

I think the elevated count might be from the ulcer and the daily Neupogen shots I am receiving and might explain my slight fever on Thursday night after my feeding tube surgery. I see my oncologist for a checkup on Thursday and will ask her about it.

Roller Coaster Ride

Wow, what a week! Just when things were getting better, I got no sleep Tuesday night when my whole body was just aching. I took some regular Tylenol, which did absolutely nothing for the pain. Wednesday, I took Tylenol 3 instead. Much better. Or maybe not as I would soon find out.

Thursday morning was my PEG tube surgery. I was told the surgery would be quick and only require 20 minutes. What I was not told until right before surgery was that they needed to hold me at the hospital for at least 4 hours after the surgery to monitor my recovery.

After surgery, my doctor informs me that he found an ulcer in my stomach during the PEG tube surgery. Take more pills, no big deal, right? Well, except for more pain in my stomach inside and outside, which I thought was from the surgery and normal during the recovery period, plus I was not allowed to eat for the remainder of the day, that pain turns out to be from the ulcer. I never knew an ulcer could hurt so much! And as much as I like Tylenol 3 for pain, I'll never forget to take it again without food.

Calm before the storm

Well, the calm before the storm did not last very long. Faced with my first bout of vomit this past weekend, constant nausea, and persistent pain throughout my legs, bones, and ankles, I can say I'm finally feeling much better. Fun! Although it is difficult to sleep through the night with all the side effects, constant drinking of water to flush my system of the chemo drugs, and then getting up all through the night to use the restroom, it is at least very encouraging that the lymph glands on the right side of my neck are already noticeably smaller, the headaches and neck pain have disappeared, and I can turn my neck without discomfort, which I could not do just a week ago.

Tomorrow, I get my 5-FU pump removed so I can at least sleep on a side of my body other than my back.

My feeding tube consultation is scheduled for this afternoon so hopefully I'll find out when they will schedule surgery to have the tube installed.

NPC Symptoms Q&A

So I have been asked multiple times by many friends on how I found out I had cancer, more specially, nasopharyngeal carcinoma. As with any cancer, early detection is key to your prognosis.

Like Lance Armstrong, I ignored all the early symptoms and warnings that would have helped catch my cancer at an earlier stage. Unfortunately, detecting nasopharyngeal carcinoma (NPC) at an early stage is difficult as the symptoms are usually presented and masked as symptoms of a common cold or allergy.

For me, I had:

• nosebleeds (I've had nosebleeds since I moved from humid Taiwan to not-so-humid USA at an early age)
  
• headaches, especially during hot weather (who doesn't have a headache now and then)
  
• post-nasal drip that lead to a persistent cough, more so during the day than at night (I went to multiple doctors who thought it was just allergies due possibly to the smog and pollen)
• popping sensation in my right ear and, not so frequently, ear pain (perhaps I should have pushed my doctors harder on this one as I'm not sure this is all that common for colds and allergies)

My cancer was not discovered until it was locally advanced with metastasis to my lymph nodes on the right side of my neck.

The World Health Organization (WHO) classifies NPC into three subtypes:

• Type 1: squamous cell carcinoma
• Type 2: non-keratinizing carcinoma
• Type 3: undifferentiated or poorly differentiated carcinoma

Unfortunately and fortunately, I was diagnosed with type 3. Type 3 is most aggressive, but out of the three types, it responds best to radiation treatment.

Your body is an amazing system with each and every organ serving a distinct and useful purpose. Please do not ignore the early warning signs.

Anticlimactic Taxol (paclitaxel) infusion

Today was my first induction chemotherapy session, which turned out to be quite uneventful. You sit in these large recliners in a not-so-big room with many other people, who are all getting different types of chemo drugs and most are asleep, a few listening to music, and others reading like me. They allow you to talk on the cell phone as long as you are not too loud, you can bring in your laptop computer, and even eat if you like. If you need to go to the restroom, no problem, just unplug your IV stand and take it with you. I think the IV monitoring machine has battery backup since that keeps running. I noticed I was the only person in the room with a port. Everyone else got their chemo drugs through an IV line in their hand. My nurse said my port is needed for the 5-FU chemo drug, which I get to take home with me in a portable pump after tomorrow's cisplatin session. Since I'm going back again tomorrow for another session, I get to keep my IV line on my chest.

The Taxol (Paclitaxel 315 mg / 552.5 cc) drug does not kick in right away. I don't feel anything except for the tenderness on my right chest from the port surgery yesterday. The surgeon at the hospital made two incisions to place the PowerPort. During the surgery, I spoke to my surgeon the whole time, asking him what he was doing, where he is from, has he done this before (joking!), and the advantages of a port versus a PICC line. He said the PICC line is used for shorter term purposes. For me, I need to get chemo for a longer period so the port is preferred.

I feel like a walking drug store. After leaving the infusion center, we stopped by the pharmacy to pick up the following:

• Dexamethasone
  
• Zantac (ranitidine)
• Ondansetron
• Lorazepam
• Prochlorperazine
• Neupogen; used to boost white blood cells
  
• BMT mouthwash; used for sores in my mouth and throat; you can swallow the liquid
  

In addition, once a week, I need blood work done to check my blood count. If the counts get too low, chemo sessions will be delayed and my risk of infection increases dramatically. I need to avoid contact with too many people, if possible.

Finally

Chemotherapy is set to start on Thursday with one session on Thursday, another on Friday, and a pump that I will take home with me delivering even more chemo drugs into my body over the next 5 days. Fun!

More waiting

Surgery is scheduled for Wednesday morning to install my portacath. The procedure will be performed at the hospital. I still haven't heard from the infusion center so I don't know when chemotherapy will start, hopefully later this week.

Preparing for induction chemotherapy

My radiation oncologist and chemo oncologist are in agreement, recommending 3 cycles of induction chemotherapy, spaced three to four weeks apart, followed by radiation and more chemotherapy.

The chemotherapy will include cisplatin, Taxol (paclitaxel), and 5-FU (fluorouracil). But before they can pump the drugs into my body, I need a portacath installed on my chest. The outpatient facility where I had my biopsy is booked until the end of October so my doctor is trying to expedite the process, which means the procedure might be performed at the hospital instead.

I am so ready to get started. Yeah, I know, after the drugs are in my system, I'm sure I'll be writing about how much they suck.

My oncologist is also recommending that I not work during any of the treatment process. I originally thought the induction chemo wouldn't be so bad, but her opinion seems different. In fact, we even discussed having a feeding tube installed now, as my body is still in good health. Going into this whole process, I was insistent on not having the feeding tube, but now I'm reconsidering, especially if it will help save my life by providing me with the calories that I need when I'm not able to eat through my mouth.

Eager to get started

Today, I met my radiation oncologist for the first time. I bet being a radiation doctor is pretty hard. I feel fortunate as my doctor is really one of the nicer doctors I have ever met. It will probably make the whole process that little bit easier.

He is classifying my case as stage 4 due to the erosion into the bone at the base of the skull. His treatment plan is for me to initially do 2 to 3 rounds of induction chemo. That will be followed by close to 40 sessions of IMRT radiation treatments concurrent with more chemo.

Tomorrow, I will see my chemo oncologist for the first time.

I'm eager to get started with the chemo. I feel like the tumors on the right side of my neck have gotten much larger in just the last three weeks. The radiation doc says the chemo will start shrinking the tumors leaving less mass for the radiation stages.

Is it everything you dreamed it would be

"So doc, what do you think it is?"

"Carcinoma of the nasopharynx." Nasopharyngeal carcinoma.

Today, we got the biopsy results confirming my doctor's suspicion. Dreams of traveling to remote places, dreams of sitting on the rocking chair and watching the kids play, dreams of growing old with my wife, but not in any of my dreams, cancer.