I'm taking 1000 mg of Vitamin D daily because Suzanne (my nutrition guru), who generally favors eating real food over popping supplements, says that it has been consistently associated with better cancer treatment outcomes. In fact, she takes the same supplement herself and thinks that almost everyone should.
Her article explaining the whys and hows of Vitamin D much better than I ever could is here: Vitamin D, Wonder Nutrient
The importance of Vitamin D supplementation is definitely not recognized in Holland. At the Bio Markt (the Dutch version of Whole Foods), there are floor-to-ceiling shelves of vitamins in alphabetical order. Vitamin C can claim almost a whole shelf to itself. But there is a gap between Vitamin C and Vitamin E, a dark hollow space that seems to say: no, we didn't misshelve D, we just don't think you should take it.
At Etos (the Dutch version of Long's or CVS), I could only find Vitamin D in combination with calcium. Three of these tablets a day would provide 750 mg of calcium and 7.5 mg of Vitamin D. But the recommended dose of Vitamin D is at least 1000 mg!
After mentioning this to Suzanne, she sent me a link to her source of Vitamin D. I ended up ordering 1000 mg Vitamin D gelcaps very cheaply (180 gelcaps for about 9 dollars, including shipping) via iherb.com and having them shipped to my brother, who will be flying here next week.
This whole experience has started me thinking that Vitamin D misinformation could be one of the biggest public health problems that should be addressed. If I were to accept everything that Suzanne wrote in her article, there are a number of things that should be changed:
1) Vitamin D supplementation should be included as part of chemotherapy treatment, if not already taken.
2) Vitamin D in higher doses should be made readily available wherever vitamins are sold.
3) The general public should be encouraged to swallow Vitamin D daily, especially in the north, through general media campaigns.
4) Certain high-risk populations (African-Americans living in Europe for example) should be targeted through tailored media campaigns.
5) Vitamin D supplementation should be taught in schools (at what age should it begin?)
It seems to me that there is a real need for a grass-roots campaign to increase the visibility of Vitamin D (perhaps following the trajectory of the successful campaign to increase calcium supplementation in adult women), but I'm not sure that I have the time or energy to launch it.
Tuesday, May 5, 2009
Treatment Against Burping
The burping and belching is still driving me mad. During Cycle 1, after spending all day googling on the search terms "burping", "belching", or "gas" plus "chemo" and "cancer", I didn't come up with much of anything useful, except a few community forum posts that indicated that I wasn't the only one who was perplexed by this not-often-mentioned side effect of chemotherapy.
On one thread, someone posted that he noticed that his mother burped continuously during her treatment period and was curious as to why, which provoked indignant responses like: "your mother has cancer and you're worried about burping?!" To this I would reply, it's hard to feel normal when your body does things it doesn't normally do. Plus, as I mentioned in an earlier post, the burping makes nausea worse.
My brother suggested over-the-counter Maalox, but that didn't work. Then I told my doctor, and he prescribed a powerful proton pump inhibitor called Pantecta (pantoprazole) to use in combination with the anti-emetics during Cycle 2. That didn't work either. In fact, I'm 90% sure it caused me to have severe heart palpitations (listed as a possible side effect for < 2% of the population), because I didn't have heart palpitations during Cycle 1, and they stopped almost immediately after I stopped taking Pantecta.
Then, I happened to be reading an website article on improving digestion and stumbled upon a few sentences about hypochlorhydria:
"Low stomach acid (hypochlorhydria) is common, especially in older people since as we age, we make less stomach acid. Research suggests that as many as half of the people over 60 years old have hypochlorhydria. A variety of factors can inhibit sufficient stomach acid production including the pathogenic bacteria, Helicobacter pylori, and frequent use of antacids. Hypochlorhydria is also associated with many diseases, such as asthma, celiac sprue, hepatitis, rheumatoid arthritis, osteoporosis, and diabetes mellitus. Signs of hypochlorhydria include a sense of fullness after eating, bloating, excessive belching, indigestion, multiple food allergies, undigested food in the stool, and peeling and cracked fingernails."
Bingo! I had almost every symptom listed to some degree.
After further investigation on the net, I discovered:
1) Hypochlorhydria is often misdiagnosed by doctors who almost always jump to the conclusion that antacids should be prescribed, which would only make the problem worse!
2) Burping can be a serious problem because it's a sign that the body is not capable of breaking food down into its component nutrients; you can eat all you want and still be starving and undernourished. I felt especially frustrated when reading this, because I had been spending so much time researching nutrition and preparing healthy food to eat, only to learn that most of it is just being flushed down the toilet!
3) Hypochlorhydria is a well-known side effect of proton pump inhibitors. After still more research, I discovered that proton pump inhibitors are recommended to mitigate some of the side effects of CHOP chemotherapy. But as far as I know, I hadn't been taking any proton pump inhibitors except for Pantecta, which I only took after I already experienced burping.
More detective work revealed that it is possible to self-diagnose hypochlorhydia by performing a challenge test with hydrochloric acid. In fact, the challenge test would also determine the appropriate treatment dosage for my level of stomach acid deficiency. Perfect.
The local Bio-Markt (Holland's version of Whole Foods Market) didn't have any hydrochloric acid in stock, but they offered to order HCl Plus by Biotics Research for me. This is a combination pill of HCl, pepsin (to simulate the body to produce HCl naturally), and Vitamin B12 (because persons with low stomach acid are always deficient in B12).
I still haven't tried the challenge test yet, but I plan to do it soon. It would be amazing to have this mystery solved!
***********
It's now a few days later and I've started taking HCl with every meal, but frankly: I can't tell whether it's working. I just read on the internet that one person took many pills, didn't feel any burning, but later got tested for stomach acid and found out that his level was normal. I don't feel any burning when I take one pill; I'm still burping, but I'm afraid to take more and end up with a self-created ulcer. So on Wednesday when I go in for my next consult, I'll see whether I can persuade my doctor to check my stomach acid level. I am now afraid to take anything for fear that my problem will worsen, but I'd really like to make these side effects go away for good.
On one thread, someone posted that he noticed that his mother burped continuously during her treatment period and was curious as to why, which provoked indignant responses like: "your mother has cancer and you're worried about burping?!" To this I would reply, it's hard to feel normal when your body does things it doesn't normally do. Plus, as I mentioned in an earlier post, the burping makes nausea worse.
My brother suggested over-the-counter Maalox, but that didn't work. Then I told my doctor, and he prescribed a powerful proton pump inhibitor called Pantecta (pantoprazole) to use in combination with the anti-emetics during Cycle 2. That didn't work either. In fact, I'm 90% sure it caused me to have severe heart palpitations (listed as a possible side effect for < 2% of the population), because I didn't have heart palpitations during Cycle 1, and they stopped almost immediately after I stopped taking Pantecta.
Then, I happened to be reading an website article on improving digestion and stumbled upon a few sentences about hypochlorhydria:
"Low stomach acid (hypochlorhydria) is common, especially in older people since as we age, we make less stomach acid. Research suggests that as many as half of the people over 60 years old have hypochlorhydria. A variety of factors can inhibit sufficient stomach acid production including the pathogenic bacteria, Helicobacter pylori, and frequent use of antacids. Hypochlorhydria is also associated with many diseases, such as asthma, celiac sprue, hepatitis, rheumatoid arthritis, osteoporosis, and diabetes mellitus. Signs of hypochlorhydria include a sense of fullness after eating, bloating, excessive belching, indigestion, multiple food allergies, undigested food in the stool, and peeling and cracked fingernails."
Bingo! I had almost every symptom listed to some degree.
After further investigation on the net, I discovered:
1) Hypochlorhydria is often misdiagnosed by doctors who almost always jump to the conclusion that antacids should be prescribed, which would only make the problem worse!
2) Burping can be a serious problem because it's a sign that the body is not capable of breaking food down into its component nutrients; you can eat all you want and still be starving and undernourished. I felt especially frustrated when reading this, because I had been spending so much time researching nutrition and preparing healthy food to eat, only to learn that most of it is just being flushed down the toilet!
3) Hypochlorhydria is a well-known side effect of proton pump inhibitors. After still more research, I discovered that proton pump inhibitors are recommended to mitigate some of the side effects of CHOP chemotherapy. But as far as I know, I hadn't been taking any proton pump inhibitors except for Pantecta, which I only took after I already experienced burping.
More detective work revealed that it is possible to self-diagnose hypochlorhydia by performing a challenge test with hydrochloric acid. In fact, the challenge test would also determine the appropriate treatment dosage for my level of stomach acid deficiency. Perfect.
The local Bio-Markt (Holland's version of Whole Foods Market) didn't have any hydrochloric acid in stock, but they offered to order HCl Plus by Biotics Research for me. This is a combination pill of HCl, pepsin (to simulate the body to produce HCl naturally), and Vitamin B12 (because persons with low stomach acid are always deficient in B12).
I still haven't tried the challenge test yet, but I plan to do it soon. It would be amazing to have this mystery solved!
***********
It's now a few days later and I've started taking HCl with every meal, but frankly: I can't tell whether it's working. I just read on the internet that one person took many pills, didn't feel any burning, but later got tested for stomach acid and found out that his level was normal. I don't feel any burning when I take one pill; I'm still burping, but I'm afraid to take more and end up with a self-created ulcer. So on Wednesday when I go in for my next consult, I'll see whether I can persuade my doctor to check my stomach acid level. I am now afraid to take anything for fear that my problem will worsen, but I'd really like to make these side effects go away for good.
Treatment Against Nausea
Nausea's usually one of the worst side effects of chemo, although it seems to affect everyone to a different degree and some not at all. I read that younger women are typically more affected.
The good news is that an array of powerful medications are available for fighting nausea, so if one combination doesn't work, then others can be tried until the right one is found. But in addition to that, there are a lot of other natural ways to fight nausea:
1) Sea bands, which use acupressure and can be found in any drug store in the U.S. I did indeed notice a difference when I put these on, but not enough to give up my anti-emetics.
2) Ginger: candied or raw or cut up into tea with some lemon & honey or in ginger beer (make sure the ingredients list real ginger, rather than ginger flavoring)
3) Marijuana: the indica variety (as opposed to sativa) is supposed to work wonders against nausea, appetite, and vomiting. A friend of a friend, who found the side effects of anti-nausea medications too debilitating, smoked 30-45 minutes before every chemo treatment and as often as needed afterwards. I tried smoking a few tokes around Day 10 after my first chemotherapy, but I didn't like the feeling of lightheadness and dizziness that went along with being high. It reminded me too much of my first few days after chemo.
4) Eating: eat many small meals per day instead of three large meals, eat bland foods, chew slowly, drink lots of water
5) Eating, Part II: make sure you eat, even if you have no interest in eating. Otherwise, the nausea will just get worse.
6) Pills: if the pill taste increases the nausea, try crushing them in food (usually meds that are not slow-release meds may be crushed) or enclosing them in gelcaps you can buy at the pharmacy.
I'm still looking for my nausea magic bullet. I still feel extremely nauseous and vomit-prone on Day 1 of chemo and then progressively less nauseous until Day 10. But my anti-nausea drug regimen -- taking granisetron (kytrol) during Days 1-3 and metoclopram preventively from Days 4-7 -- in addition to following the tips above, have helped a lot.
The good news is that an array of powerful medications are available for fighting nausea, so if one combination doesn't work, then others can be tried until the right one is found. But in addition to that, there are a lot of other natural ways to fight nausea:
1) Sea bands, which use acupressure and can be found in any drug store in the U.S. I did indeed notice a difference when I put these on, but not enough to give up my anti-emetics.
2) Ginger: candied or raw or cut up into tea with some lemon & honey or in ginger beer (make sure the ingredients list real ginger, rather than ginger flavoring)
3) Marijuana: the indica variety (as opposed to sativa) is supposed to work wonders against nausea, appetite, and vomiting. A friend of a friend, who found the side effects of anti-nausea medications too debilitating, smoked 30-45 minutes before every chemo treatment and as often as needed afterwards. I tried smoking a few tokes around Day 10 after my first chemotherapy, but I didn't like the feeling of lightheadness and dizziness that went along with being high. It reminded me too much of my first few days after chemo.
4) Eating: eat many small meals per day instead of three large meals, eat bland foods, chew slowly, drink lots of water
5) Eating, Part II: make sure you eat, even if you have no interest in eating. Otherwise, the nausea will just get worse.
6) Pills: if the pill taste increases the nausea, try crushing them in food (usually meds that are not slow-release meds may be crushed) or enclosing them in gelcaps you can buy at the pharmacy.
I'm still looking for my nausea magic bullet. I still feel extremely nauseous and vomit-prone on Day 1 of chemo and then progressively less nauseous until Day 10. But my anti-nausea drug regimen -- taking granisetron (kytrol) during Days 1-3 and metoclopram preventively from Days 4-7 -- in addition to following the tips above, have helped a lot.
Treatment Against Mouth Sores
I don't have to avoid citrus fruit or rinse my mouth with salt water anymore. I've figured out how to self-treat mouth sores.
Besides rinsing my mouth after every meal, brushing my tongue and where the gums meet the teeth once a day, flossing and using water pic once in a while, and using wooden toothsticks to massage the gums between the teeth every night, I've also started to massage my gums with the pads of my fingers. Not just the gum area around the teeth, but my entire mouth. It only takes a few seconds a day and it really works!
Besides rinsing my mouth after every meal, brushing my tongue and where the gums meet the teeth once a day, flossing and using water pic once in a while, and using wooden toothsticks to massage the gums between the teeth every night, I've also started to massage my gums with the pads of my fingers. Not just the gum area around the teeth, but my entire mouth. It only takes a few seconds a day and it really works!
Monday, May 4, 2009
Day-by-Day Breakdown, Chemo Cycle II
Day 1: extreme nausea (made some mistakes such as not taking my granisetron in time because it was not available at my pharmacy and not bringing enough food to chemo so that when I finally ate, I ate too fast and I ate everything on the sandwich, including the cheese), dizziness, and fatigue
Day 2: nausea in the morning, fatigue, slight cough, hyperactivity leading to sleeplessness (side effect of prednisolon), slight neuropathy, more hair loss
Day 3: slight nausea in the morning, slight cough, hyperactivity, a lot of hair loss in the shower, breakthrough pain
Day 4: slight nausea, heart palpitations, breakthrough pain
Day 5: same as Day 4
Day 6: same as Day 4
Day 7 (Queen's Day): slight nausea, heart palpitations, some breakthrough pain, fatigue, strange taste in saliva
Day 8 (took only Pantecta against nausea today): slight nausea, burping, very strong heart palpitations, slight cough, some neuropathy, some night sweats, toes black, thumbnails turning black, stiff/sore right leg, stiff right arm
Day 9 (took only metoclopram against nausea today): same as Day 8 but with only slight heart palpitations
Day 10 (took no medications against nausea today, started yoga/meditation/self-massage for hands): burping, congestion, slight cough, some neuropathy, toes black, thumbnails turning black
Day 11: same as Day 10 but with a bit more energy, actually one of the best days I've had since diagnosis
Day 12: same as Day 10 but with much stronger cough and congestion (I'm guessing that my dip period begins on Day 12)
Day 13: same as Day 10 but with much stronger cough and congestion (I'm guessing that my dip period begins on Day 12). I also accidentally cut myself on Day 12. It's was a tiny cut that would have ordinarily closed in an hour, but today it's still bleeding like a fresh cut. I put Bacitracin and a bandaid on it, to prevent infection, but the bleeding would probably indicate a low platelet count.
This chemo cycle seems to be better against nausea, though I have hopes that I won't vomit at all during Round 3, and I still feel queasy from time to time. I'm concerned about the atrial fibrillations. Even though they don't seem to be considered a serious side effect, I have this sensation that I need to take deep breaths to prevent myself from having a heart attack. I'm also concerned about the breakthrough pain; does it mean that the cancer is still fighting back?
I've had this cold since the week of March 1 -- thus, for more than two months. I am betting now that I'll have it for the entire course of chemotherapy.
Day 2: nausea in the morning, fatigue, slight cough, hyperactivity leading to sleeplessness (side effect of prednisolon), slight neuropathy, more hair loss
Day 3: slight nausea in the morning, slight cough, hyperactivity, a lot of hair loss in the shower, breakthrough pain
Day 4: slight nausea, heart palpitations, breakthrough pain
Day 5: same as Day 4
Day 6: same as Day 4
Day 7 (Queen's Day): slight nausea, heart palpitations, some breakthrough pain, fatigue, strange taste in saliva
Day 8 (took only Pantecta against nausea today): slight nausea, burping, very strong heart palpitations, slight cough, some neuropathy, some night sweats, toes black, thumbnails turning black, stiff/sore right leg, stiff right arm
Day 9 (took only metoclopram against nausea today): same as Day 8 but with only slight heart palpitations
Day 10 (took no medications against nausea today, started yoga/meditation/self-massage for hands): burping, congestion, slight cough, some neuropathy, toes black, thumbnails turning black
Day 11: same as Day 10 but with a bit more energy, actually one of the best days I've had since diagnosis
Day 12: same as Day 10 but with much stronger cough and congestion (I'm guessing that my dip period begins on Day 12)
Day 13: same as Day 10 but with much stronger cough and congestion (I'm guessing that my dip period begins on Day 12). I also accidentally cut myself on Day 12. It's was a tiny cut that would have ordinarily closed in an hour, but today it's still bleeding like a fresh cut. I put Bacitracin and a bandaid on it, to prevent infection, but the bleeding would probably indicate a low platelet count.
This chemo cycle seems to be better against nausea, though I have hopes that I won't vomit at all during Round 3, and I still feel queasy from time to time. I'm concerned about the atrial fibrillations. Even though they don't seem to be considered a serious side effect, I have this sensation that I need to take deep breaths to prevent myself from having a heart attack. I'm also concerned about the breakthrough pain; does it mean that the cancer is still fighting back?
I've had this cold since the week of March 1 -- thus, for more than two months. I am betting now that I'll have it for the entire course of chemotherapy.
Viva Amsterdam!
Okay, non-Dutch cancer patients. Prepare to be jealous.
I had my arbo doctor appointment this morning.
A few weeks ago, a letter arrived in the post, written in Dutch, requesting that I meet with the arbo doctor and notify my company if I cannot attend. Then a woman from Human Resources called me to ask if I received the letter. I asked her what it was all about, because we have nothing like this in the States.
Apparently, by law, all employees who are absent from work for more than 5 days meet with an arbo doctor. I didn't need to bring or prepare anything for the meeting, and Human Resources insisted that I take a taxi to the meeting and back.
I asked a long term resident about the arbo doctor and she said not to worry; the company is absolutely not checking up on me. In fact, the arbo doctor will typically take sides with the patient over the company. They are there to ensure that the employee is not overworked during his/her illness and to ease the transition back to work. Sometimes they insist, for example, that an employee on maternity leave only work half-days for the first week they are back in the office.
The arbo doctor asked me a few questions about my diagnosis, treatment, and its side effects. He also explained that I could not legally lose my job for up to two years. The first year, I would continue to receive 100% of my salary. The second year, I would receive 70%. The doctor showed me the form he was completing to send to my company, which legally could not mention my diagnosis or specific side effects; mostly it just stated that I had been working approximately 20 hours a week due to problems with fatigue and concentration, resulting from my treatment. He was careful to tell me that stating this number in the letter was by no means binding me to work 20 hours a week. Also as required by law, we will continue to meet every 6 weeks by telephone or email throughout my treatment.
Wow. While I've never been sick for more than 5 days in the U.S., I'm pretty sure that's not how it works there. My former company combined sick and vacation days, and we had 20 days in total. I know I had short-term and long-term disability benefits, but I never bothered to look at the fine print, so I have no idea whether it is anywhere near as simple or comprehensive as the Dutch system.
My cousin just sent me a link to an article in the New York Times that goes on quite a bit about the 52% tax rate in the Netherlands. The article mentions some of the benefits citizens get as a result, but not this one. I am feeling truly thankful that I am here at this moment...and also a little bit guilty, as I don't even pay the 52% tax rate. As an expat, I get a big tax break called the 30% ruling, which means that I don't get taxed on the first 30% of my income. Oh well: one doesn't turn down free money!
I had my arbo doctor appointment this morning.
A few weeks ago, a letter arrived in the post, written in Dutch, requesting that I meet with the arbo doctor and notify my company if I cannot attend. Then a woman from Human Resources called me to ask if I received the letter. I asked her what it was all about, because we have nothing like this in the States.
Apparently, by law, all employees who are absent from work for more than 5 days meet with an arbo doctor. I didn't need to bring or prepare anything for the meeting, and Human Resources insisted that I take a taxi to the meeting and back.
I asked a long term resident about the arbo doctor and she said not to worry; the company is absolutely not checking up on me. In fact, the arbo doctor will typically take sides with the patient over the company. They are there to ensure that the employee is not overworked during his/her illness and to ease the transition back to work. Sometimes they insist, for example, that an employee on maternity leave only work half-days for the first week they are back in the office.
The arbo doctor asked me a few questions about my diagnosis, treatment, and its side effects. He also explained that I could not legally lose my job for up to two years. The first year, I would continue to receive 100% of my salary. The second year, I would receive 70%. The doctor showed me the form he was completing to send to my company, which legally could not mention my diagnosis or specific side effects; mostly it just stated that I had been working approximately 20 hours a week due to problems with fatigue and concentration, resulting from my treatment. He was careful to tell me that stating this number in the letter was by no means binding me to work 20 hours a week. Also as required by law, we will continue to meet every 6 weeks by telephone or email throughout my treatment.
Wow. While I've never been sick for more than 5 days in the U.S., I'm pretty sure that's not how it works there. My former company combined sick and vacation days, and we had 20 days in total. I know I had short-term and long-term disability benefits, but I never bothered to look at the fine print, so I have no idea whether it is anywhere near as simple or comprehensive as the Dutch system.
My cousin just sent me a link to an article in the New York Times that goes on quite a bit about the 52% tax rate in the Netherlands. The article mentions some of the benefits citizens get as a result, but not this one. I am feeling truly thankful that I am here at this moment...and also a little bit guilty, as I don't even pay the 52% tax rate. As an expat, I get a big tax break called the 30% ruling, which means that I don't get taxed on the first 30% of my income. Oh well: one doesn't turn down free money!
Sunday, May 3, 2009
Marinated Cucumber Recipe
For some reason, vinegary things seem to go down well. And cucumbers are on the list of the world's healthiest foods. This is my mom's recipe:
1. Wash cucumber well and slice as thin as you can.
2. If you have time, soak the slices in salty water for > 1/2 hour. If you are in a hurry, sprinkle the slices with a little salt, let sit 5-10 minutes, and rinse the salt off.
4. Squeeze out the water.
5. Add sugar, vinegar, and sesame oil to taste. You can also add garlic sesame seeds and/or a little soy sauce.
You can eat this immediately or you can keep it in the fridge. You can do the same thing to asparagus after you cook it in salty boiled water for 5-8 minutes and cool it off naturally or in cold water.
1. Wash cucumber well and slice as thin as you can.
2. If you have time, soak the slices in salty water for > 1/2 hour. If you are in a hurry, sprinkle the slices with a little salt, let sit 5-10 minutes, and rinse the salt off.
4. Squeeze out the water.
5. Add sugar, vinegar, and sesame oil to taste. You can also add garlic sesame seeds and/or a little soy sauce.
You can eat this immediately or you can keep it in the fridge. You can do the same thing to asparagus after you cook it in salty boiled water for 5-8 minutes and cool it off naturally or in cold water.
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