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!