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    User: Lynne-I-Am

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    willie wrote on HeidiKugler's wall

    Heidi, we go to OSU in Columbus OH. I was surprised to read that you had no side effects or problems with chemo, but everyone is actually different from others.
    These are some things that we have learned over the years:
    Dryness. Total body dryness. This was (is) a big issue on a daily basis for my wife when she had IV chemo and now as she is taking oral chemo. Here are some things that we have learned from a number of people over too long a time.
    BIOTENE This stuff is wonderful for her mouth. Get the rinse-and-spit bottle and the lozenges. Plus, they make a toothpaste! Goods stuff.
    RESTASIS This is a prescription from her ophthalmologist for her dry eyes.
    EYES: Also, we learned that it is OK to mix Restasis with Systeane Ultra drops and Systane Nighttime ointment. The 3 are working well against the dry eye.
    LANOLIN LOTIONS Put it on after a shower while you are still damp.
    SHEA BUTTER in chap stick.
    COCONUT OIL This is wonderful for sex. We started using it years ago during menopause---still works great. Use liberally.
    WATER Keep a bottle handy and drink it.
    LIQUID BANDAGE Pat gets cracked finger tips. Use this to allow them to heal.
    RUBBER GLOVES Get some elbow-length ones for washing dishes to keep your hands out of soap and water.
    NO SOAP Pat uses soap only on her arm pits and crotch. Everything else gets MOISTURIZING CLEANSERs.
    LOMA This is an after-shampoo rinse to help her hair, from Amazon. She tries to shampoo as little as possible, like twice a week.
    PROBIOTIC: The chemo is hard on her gut. The probiotic helps keep those microbiomes in there to aid digestion. Talk with your doc about it.

    It took us too long to learn this because this dryness is torture by increments. So save yourselves the aggravation and get ahead of the curve. Try some of these products and make life more pleasant.
    Compression stockings. Pat thought (for too long) that those ugly hospital or airplane stockings were the only thing out there. Then she started looking and found some very attractive ones, that work! Why put up with the swollen ankles if you don't have too? Buy yourself or your sweety some as a gift.

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    willie posted an update

    MEDICATON REMINDER! Maybe i am late to the game, but after 10 years of this, we just figured out that we could use a medication reminder! An app on my wife's smart phone. Duh!
    What happened is that she couldn't figure out what she had taken or forgot to take last night. For whatever reason. I'm sure you have been in the same boat at some point: meds change over time, temporary meds come and go, allergies arise, etc. So we went to the Apple App Store (and the other types of phone have apps, too) and got an app to reminder Pat about her meds. One feature we (I) looked for was a every-5-min-reminder until she actually takes the pill so that she won't put it off "until i get this other thing done".
    Go look at those apps and make your life a little easier.

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    willie wrote on Princessdi's wall

    Di: I read that your friend has not begun treatment; keep this list for later use. These are some things that we have learned over the years:
    Dryness. Total body dryness. This was (is) a big issue on a daily basis for my wife when she had IV chemo and now as she is taking oral chemo. Here are some things that we have learned from a number of people over too long a time.
    BIOTENE This stuff is wonderful for her mouth. Get the rinse-and-spit bottle and the lozenges. Plus, they make a toothpaste! Goods stuff.
    RESTASIS This is a prescription from her ophthalmologist for her dry eyes.
    EYES: Also, we learned that it is OK to mix Restasis with Systeane Ultra drops and Systane Nighttime ointment. The 3 are working well against the dry eye.
    LANOLIN LOTIONS Put it on after a shower while you are still damp.
    SHEA BUTTER in chap stick.
    COCONUT OIL This is wonderful for sex. We started using it years ago during menopause---still works great. Use liberally.
    WATER Keep a bottle handy and drink it.
    LIQUID BANDAGE Pat gets cracked finger tips. Use this to allow them to heal.
    RUBBER GLOVES Get some elbow-length ones for washing dishes to keep your hands out of soap and water.
    NO SOAP Pat uses soap only on her arm pits and crotch. Everything else gets MOISTURIZING CLEANSERs.
    LOMA This is an after-shampoo rinse to help her hair, from Amazon. She tries to shampoo as little as possible, like twice a week.
    PROBIOTIC: The chemo is hard on her gut. The probiotic helps keep those microbiomes in there to aid digestion. Talk with your doc about it.

    It took us too long to learn this because this dryness is torture by increments. So save yourselves the aggravation and get ahead of the curve. Try some of these products and make life more pleasant.
    Compression stockings. Pat thought (for too long) that those ugly hospital or airplane stockings were the only thing out there. Then she started looking and found some very attractive ones, that work! Why put up with the swollen ankles if you don't have too? Buy yourself or your sweety some as a gift.

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    willie shared an experience

    Clinical Trial (inhibitor of cyclin D1/CDK4 and CDK6): Started Sept 2020. This is a trial of ribociclib combined with Femara. Only side effects so far are fatigue. 2 women are on this trial at our facility; the other woman had to reduce the dosage due to her lab values. As of Oct 22 Pat's labs values are still reasonable., CA-125 reduced from 327 to 307---not great, but down.