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!
Friday, December 19, 2008
Tuesday, December 16, 2008
Sunday, December 14, 2008
Friday, December 12, 2008
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.
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.
Thursday, December 4, 2008
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).
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).
Thursday, November 20, 2008
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.
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.
Monday, November 17, 2008
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.
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.
Friday, November 7, 2008
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?
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?
Thursday, November 6, 2008
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.
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.
Saturday, November 1, 2008
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.
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.
Tuesday, October 28, 2008
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.
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.
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.
Saturday, October 25, 2008
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.
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.
Tuesday, October 21, 2008
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.
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.
Thursday, October 16, 2008
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:
The World Health Organization (WHO) classifies NPC into three subtypes:
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.
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)
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
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:
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
Monday, October 13, 2008
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.
Thursday, October 9, 2008
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.
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.
Wednesday, October 8, 2008
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.
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.
Monday, October 6, 2008
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.
"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.
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