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.