Here's the advice I've collected on the internet against GERD so far:
Avoid anything carbonated or effervescent. [Note: There is a lot of contradictory information out there about carbonation. My doctor recommended that I try original Coke. But both days that I actually drank a Coke (Day 1 and Day 7), I vomited. I've also been recommended to drink ginger ale and ginger beer for nausea.]
Eat bland food.
Avoid dairy products, sugar, fat, and spices.
Prop up the head of the bed 6 inches, or sleep in a recliner.
Cut HALF a banana, mash it, and eat it, chewing slowly.
Sip room temperature water to dilute the acid.
Wear loose-fitting clothes.
Avoid lying down for 3 hours after a meal.
Avoid citrus fruits such as oranges, lemons, grapefruits, tomatoes, and cranberries.
Avoid caffeine in all forms.
Don’t overeat.
Yesterday, I had eaten a late lunch of Dutch pancakes with bacon, apple, and syrup along with a Coca-Cola. We then biked to a cafe outside of town where I shared an apple pie with whipped cream and a Bitter Lemon. At dinner, I had a mango juice and shoarma smothered with a mix of garlic sauce, hot sauce, and mild salsa. At the bar afterwards, I had a bottle of cranberry juice.
In other words, I had broken almost every rule above and am now paying the price. When I came home, I felt awful. I vomited around 2am, and again around 4am, and didn't feel better even after that, though I had nothing left in my stomach to eject. I spent almost all day today collapsed on the couch marathoning 30 Rock episodes, it's almost midnight, and I still feel nauseous. I'm actually afraid to lie down.
I feel like I'm Bill Murray in Groundhog Day, doomed to repeat the same day again and again, until I figure out how to do it right. Now I am in Cycle 3 of 8 and I've figure out how to manage or eliminate constipation, mouth sores, neuropathy, and hair loss. But I'm still struggling with nausea and vomiting.
So far, I've tried all of the following, with no noticeable improvement and some uncomfortable side effects:
Granisetron (Kytril), only prescribed for the first 3 days and hasn't stopped me from vomiting on the first day of each cycle
Zantac (H2-receptor antagonist)
Maalox (antacid)
Pantecta (a PPI), strong side effect of heart palpitations
metoclopramide, strong side effect of dizziness and drowsiness
sativa marijuana, strong side effect of dizziness
original Coke
ginger beer
HCl Plus
My doctor thinks the problem is GERD. For a brief while, I thought the problem was not enough stomach acid. But now I'm wondering whether the problem is dyspepsia -- simple indigestion. I don't have heartburn and only once in a while do I taste stomach acid in my throat, but that's always due to burping. Burping is my biggest symptom and that seems to be caused primarily by excess gas in the stomach, not a weakness of the muscle that separates the stomach from the esophagus.
According to Wikipedia, clinical trials show that antacids and H2-receptor antagonists like Zantac have little to no effectiveness against dyspepsia when compared to placebo. Also very interestingly, metoclopramide, which my doctor prescribed, has also been shown to be ineffective.
The same Wiki article stated that a herbal remedy called Iberogast and PPIs have been proven to work. So next I'll try the Iberogast and ask my doctor to prescribe another PPI besides Pantecta.
* * * * * * * * * * * * * * * * * * *
UPDATE: well, I tried the Iberogast. A little bottle sells here for about 15 euros, and I'm supposed to take 20 drops three times a day. The taste is somewhat awful, and I didn't notice a difference after taking it once. I stopped taking it, because the burping has gotten somewhat more tolerable now that I'm on Day 11 of this cycle. I saw today that another blogger (Carrie's NHL Blog) wrote that nausea wasn't a big problem for her: "Zofran, Compazine and Ativan work great and, when I just need a little something, I take 500 mg – 1000 mg of ginger." So I plan to do some further investigation of this option before my next consult.
Showing posts with label advice. Show all posts
Showing posts with label advice. Show all posts
Friday, May 22, 2009
Monday, May 11, 2009
Treatment Against Peripheral Neuropathy
Two weeks ago, I experienced a little bit of peripheral neuropathy (tingling in hands and feet, fingernails and toenails turning black). My right thumb seemed to suffer the worst and alternated throughout the days between numbness and tingling.
I read that it's best to address neuropathic symptoms as soon as they are noticed; otherwise, more serious side effects can develop. But there is not so much information available on the web on how exactly to go about tackling the problem.
Other survivors have highly recommended taking 10 grams of glutamine daily, acupuncture, and (to a far lesser extent) professional massage or acupressure. Unfortunately, alternative treatments are not covered by my insurance policy. In some ways, this is a relief for me, because then I'd have to mount a campaign to persuade my not-so-holistically inclined doctor to refer me to one of these specialists. I don't think I have the energy for that.
In the meantime, as this particular side effect is not too bad at the moment, I tried self-massaging my hands several times a day using a combination of techniques from these videos:
Self-Massage for Hands
Ten Step Hand Reflexology Self-Treatment
Note that the Expert Village series also includes self-massage for the neck, tired eyes, bottom of feet and heels, feet in high heels, after-meal relief, arms, back, and lower back. Also, if self-massage doesn't appeal, one website recommended asking a partner or friend to learn massage and have them perform it on you (one way to test whether they really mean what they say when they say: "let me know if there's anything I can do!"). I quite liked that idea, but the nice thing about self-massage is that I can do it every day, several times a day, whenever I want.
The hand self-massaging feels good (I do it almost subconsciously now, when I'm waiting in line at the pharmacy, for example), but didn't produce any noticeable reduction of my existing neuropathic symptoms.
But yesterday, I massaged my entire body using a powerful electric massager I bought years ago from Sharper Image, focusing on the palm of my hand and all around my thumb. This not only provided instant relief, but even hours later, my thumb neuropathy has virtually disappeared.
I've also noticed recently that if I wear warm mittens and socks to bed, I don't wake up with tingling in my feet or hands. It makes sense to me that the blood should circulate better if it's kept warm, so I might try wearing my mittens around the house as well.
It could be that the neuropathic symptoms are simply waning as more days pass after my last chemo treatment. I'll have to see whether these techniques will continue to work when I plunge into Chemo Round 3, which begins next Friday.
* * * * * * * * * * * *
UPDATE: now it's Day 8 of my third chemo cycle, and I have (so far) less neuropathy than I did during Cycle 2 at the same time point. I use my massager on both hands and arms whenever I feel tingling in my right thumb, so approximately 2-3 times a day. So far, I haven't developed neuropathy anywhere else.
I read that it's best to address neuropathic symptoms as soon as they are noticed; otherwise, more serious side effects can develop. But there is not so much information available on the web on how exactly to go about tackling the problem.
Other survivors have highly recommended taking 10 grams of glutamine daily, acupuncture, and (to a far lesser extent) professional massage or acupressure. Unfortunately, alternative treatments are not covered by my insurance policy. In some ways, this is a relief for me, because then I'd have to mount a campaign to persuade my not-so-holistically inclined doctor to refer me to one of these specialists. I don't think I have the energy for that.
In the meantime, as this particular side effect is not too bad at the moment, I tried self-massaging my hands several times a day using a combination of techniques from these videos:
Self-Massage for Hands
Ten Step Hand Reflexology Self-Treatment
Note that the Expert Village series also includes self-massage for the neck, tired eyes, bottom of feet and heels, feet in high heels, after-meal relief, arms, back, and lower back. Also, if self-massage doesn't appeal, one website recommended asking a partner or friend to learn massage and have them perform it on you (one way to test whether they really mean what they say when they say: "let me know if there's anything I can do!"). I quite liked that idea, but the nice thing about self-massage is that I can do it every day, several times a day, whenever I want.
The hand self-massaging feels good (I do it almost subconsciously now, when I'm waiting in line at the pharmacy, for example), but didn't produce any noticeable reduction of my existing neuropathic symptoms.
But yesterday, I massaged my entire body using a powerful electric massager I bought years ago from Sharper Image, focusing on the palm of my hand and all around my thumb. This not only provided instant relief, but even hours later, my thumb neuropathy has virtually disappeared.
I've also noticed recently that if I wear warm mittens and socks to bed, I don't wake up with tingling in my feet or hands. It makes sense to me that the blood should circulate better if it's kept warm, so I might try wearing my mittens around the house as well.
It could be that the neuropathic symptoms are simply waning as more days pass after my last chemo treatment. I'll have to see whether these techniques will continue to work when I plunge into Chemo Round 3, which begins next Friday.
* * * * * * * * * * * *
UPDATE: now it's Day 8 of my third chemo cycle, and I have (so far) less neuropathy than I did during Cycle 2 at the same time point. I use my massager on both hands and arms whenever I feel tingling in my right thumb, so approximately 2-3 times a day. So far, I haven't developed neuropathy anywhere else.
Treatment Against Cough
I've had this @#$%ing cold since the week of March 1.
I can't get rid of it, because every time it's about to go away, I enter into the phase of my chemo cycle where my white blood cell count heads south and then of course my cold viruses figure the parents are out of the house and it's time to PARTY!
As I figure that I'm going to end up with terrible cold symptoms every 3 weeks until September, I've been doing my best to alleviate the cough and congestion via these techinques, gathered primarily from web research:
1) alternating peppermint tea with a tea made from ginger, lemon, honey, and a couple of shakes of cayenne pepper
2) a few drops of eucalyptus oil in a steaming hot shower
3) wearing a hat, gloves, and socks around the apartment
4) dosing with Nyquil (though I'm going to switch to prescription codeine as soon as I can) at night so that I can quiet the cough enough to sleep
5) drinking liters of water and barley tea
* * * * * * * * * * * * * * * * * * *
UPDATE: it's now Day 10 of Cycle 3 -- no more cough!!! It's a miracle! I'm now just crossing my fingers that it won't come back on Day 13, which is when my cough usually got much worse during my first two cycles.
I can't get rid of it, because every time it's about to go away, I enter into the phase of my chemo cycle where my white blood cell count heads south and then of course my cold viruses figure the parents are out of the house and it's time to PARTY!
As I figure that I'm going to end up with terrible cold symptoms every 3 weeks until September, I've been doing my best to alleviate the cough and congestion via these techinques, gathered primarily from web research:
1) alternating peppermint tea with a tea made from ginger, lemon, honey, and a couple of shakes of cayenne pepper
2) a few drops of eucalyptus oil in a steaming hot shower
3) wearing a hat, gloves, and socks around the apartment
4) dosing with Nyquil (though I'm going to switch to prescription codeine as soon as I can) at night so that I can quiet the cough enough to sleep
5) drinking liters of water and barley tea
* * * * * * * * * * * * * * * * * * *
UPDATE: it's now Day 10 of Cycle 3 -- no more cough!!! It's a miracle! I'm now just crossing my fingers that it won't come back on Day 13, which is when my cough usually got much worse during my first two cycles.
Tuesday, May 5, 2009
Vitamin D
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.
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.
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!
Sunday, April 26, 2009
Hair Loss, Part II
I've decided that I won't look half-bad as a bald chick.
And my new look is slowly coming together.
My recommendations regarding hair loss to those who are starting chemo:
1. Don't do what I did and pay 60 euros to a top-stylist to get all your hair chopped short, unless you have plenty of money to burn. It is good to get it chopped short, but get a friend to do it for free because it turns out that the hair, if it's going to fall out (for some people, it doesn't), tends to shed like crazy already between the 12th and 18th day of the first chemo treatment. This usually happens most noticeably in the shower.
2. When this starts to happen, start immediately planning your new on-treatment look. I procrastinated a bit too long and ended up not washing my hair for DAYS because I didn't have my new look ready and still wanted to go out in public as a normal person and not as a cancer patient.
3. I highly recommend going to a neighborhood salon to get a complete shave (explain your situation and ask them if they can do something for you after-hours with the curtains closed; maybe you'll find it's no big deal, but it could also be more traumatic than you expect) or get someone to help you do it at home. I didn't go to a salon because I had already spent 60 euros on my hair just a few weeks before and figured that it wouldn't be so bad to have the hair fall out when it was so short. True that the shorter hair probably helped, but I still had way more hair to lose than I expected, as I didn't get a military buzz cut. I still had layered hair in the front down to my chin: a very stylish cut that lasted in its original form approximately 1 week.
4. I regretted not going bald sooner because my hair kept falling out in my bed and on the bathroom floor and in my food. Ugh. Also, when it does come out in the shower (and especially after not washing your hair for 4 days so that the hair is really READY to dive out of your scalp), it feels extremely creepy for it to clump up in your hand and get stuck to your body and pile up on the shower floor. I didn't cry, but I did have to recite all the things I was grateful for and keep my eyes closed while almost all of the rest of my hair fell out. I also had to take three showers in a row and emerge with lobster-red skin and pruney fingers at the end.
5. I found out that high-quality wigs are not hot and itchy like the wigs you buy at the costume store for Halloween. They are also very expensive (500-600 euros here in Amsterdam) and my insurance only covers 250 of that. I tried on a bunch; they all looked a little weird to me, especially on top, but I might be able to style them so they look more natural. We narrowed it down to three choices at the wig shop, one of which I wanted to see in a darker color, and they will come to my apartment for free after it arrives so I can try on the three again. I was told that shorter wigs are generally better because they are far less likely to get caught on things like sofas and jacket zippers. You apparently have to be really careful that they don't get pulled off or twisted.
6. But, there's also another cool option that was invented in Amsterdam, of all places! (lucky me again!) It's called a toupim: www.toupim.nl (you can click on a link on the home page for an English translation of the site) and it only costs 95 euros compared to the 500+ for a full wig. I had a lot of fun with this because I narrowed my options down to four and then emailed all my female friends to have them vote on which look they thought would suit me best. It was great because I got all kinds of advice and found out about clip-on hair extensions (http://www.headkandy.com/), which aren't too expensive and that I can add to my toupim when I'm feeling in the mood for a little jazzy color. I can attest to the fact that the hair is high quality and the hair band is very comfortable. I wish there was a little more hair framing the face in the style that I got (half-long Jasmijn) but I'm hoping that the hair extensions will help with that when I get them. Also, I must say that the customer service has been impeccable. I ordered my toupim online on a Friday evening, and it arrived special delivery (the owner apparently biked it over on her way home from work) one hour later. I emailed on Sunday if I could exchange it for a different size and the owner emailed me back the same night to say that would be fine; she'll drop by tomorrow to perform the exchange.
7. I fully intend to shave the rest of my hair off myself as soon as I get my wig (it's supposed to come today). Lurking on the Young Survivor's Coalition website (it's targeted for breast cancer survivors, but I find it helpful anyway), I learned that once you shave it, there will be stubble and the best way to clean off the stubble is with a lint roller!
And my new look is slowly coming together.
My recommendations regarding hair loss to those who are starting chemo:
1. Don't do what I did and pay 60 euros to a top-stylist to get all your hair chopped short, unless you have plenty of money to burn. It is good to get it chopped short, but get a friend to do it for free because it turns out that the hair, if it's going to fall out (for some people, it doesn't), tends to shed like crazy already between the 12th and 18th day of the first chemo treatment. This usually happens most noticeably in the shower.
2. When this starts to happen, start immediately planning your new on-treatment look. I procrastinated a bit too long and ended up not washing my hair for DAYS because I didn't have my new look ready and still wanted to go out in public as a normal person and not as a cancer patient.
3. I highly recommend going to a neighborhood salon to get a complete shave (explain your situation and ask them if they can do something for you after-hours with the curtains closed; maybe you'll find it's no big deal, but it could also be more traumatic than you expect) or get someone to help you do it at home. I didn't go to a salon because I had already spent 60 euros on my hair just a few weeks before and figured that it wouldn't be so bad to have the hair fall out when it was so short. True that the shorter hair probably helped, but I still had way more hair to lose than I expected, as I didn't get a military buzz cut. I still had layered hair in the front down to my chin: a very stylish cut that lasted in its original form approximately 1 week.
4. I regretted not going bald sooner because my hair kept falling out in my bed and on the bathroom floor and in my food. Ugh. Also, when it does come out in the shower (and especially after not washing your hair for 4 days so that the hair is really READY to dive out of your scalp), it feels extremely creepy for it to clump up in your hand and get stuck to your body and pile up on the shower floor. I didn't cry, but I did have to recite all the things I was grateful for and keep my eyes closed while almost all of the rest of my hair fell out. I also had to take three showers in a row and emerge with lobster-red skin and pruney fingers at the end.
5. I found out that high-quality wigs are not hot and itchy like the wigs you buy at the costume store for Halloween. They are also very expensive (500-600 euros here in Amsterdam) and my insurance only covers 250 of that. I tried on a bunch; they all looked a little weird to me, especially on top, but I might be able to style them so they look more natural. We narrowed it down to three choices at the wig shop, one of which I wanted to see in a darker color, and they will come to my apartment for free after it arrives so I can try on the three again. I was told that shorter wigs are generally better because they are far less likely to get caught on things like sofas and jacket zippers. You apparently have to be really careful that they don't get pulled off or twisted.
6. But, there's also another cool option that was invented in Amsterdam, of all places! (lucky me again!) It's called a toupim: www.toupim.nl (you can click on a link on the home page for an English translation of the site) and it only costs 95 euros compared to the 500+ for a full wig. I had a lot of fun with this because I narrowed my options down to four and then emailed all my female friends to have them vote on which look they thought would suit me best. It was great because I got all kinds of advice and found out about clip-on hair extensions (http://www.headkandy.com/), which aren't too expensive and that I can add to my toupim when I'm feeling in the mood for a little jazzy color. I can attest to the fact that the hair is high quality and the hair band is very comfortable. I wish there was a little more hair framing the face in the style that I got (half-long Jasmijn) but I'm hoping that the hair extensions will help with that when I get them. Also, I must say that the customer service has been impeccable. I ordered my toupim online on a Friday evening, and it arrived special delivery (the owner apparently biked it over on her way home from work) one hour later. I emailed on Sunday if I could exchange it for a different size and the owner emailed me back the same night to say that would be fine; she'll drop by tomorrow to perform the exchange.
7. I fully intend to shave the rest of my hair off myself as soon as I get my wig (it's supposed to come today). Lurking on the Young Survivor's Coalition website (it's targeted for breast cancer survivors, but I find it helpful anyway), I learned that once you shave it, there will be stubble and the best way to clean off the stubble is with a lint roller!
Saturday, April 4, 2009
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