July 2020 chemo club

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  • Shar2020
    Shar2020 Member Posts: 234
    edited August 2020

    Lifo45, your dream to own a home with 1-2 acres, an orchard and a dog sounds lovely.

    Smichaels11, a garden with a pumpkin patch! It reminded me of a pumpkin patch I saw that had a mason jar of milk beside every pumpkin and a straw inserted in the milk and pumpkin. I have to do a Google search to see if anyone still does that.

    Seilen, good luck to you, too, and best wishes with your treatments as you get your port and go through chemo again.

    Mtspacekace, glad to read that you are feeling good now.

    Kukalona, that's great the first few days were not too bad, but sorry to read about the pain. The soup, water and walking sound helpful.

    Iamloved, glad to read that your infusion went well. I like your motto, Faith Over Fear. Thank you for telling us about the PerioBrite Dry Mouth lozenges. A potluck picnic with your friends will be fun. How was the fasting?

    My first infusion for today was cancelled and rescheduled for July 23 to do additional testing in follow up to CT results.

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  • AnnaTheBrave
    AnnaTheBrave Member Posts: 69
    edited July 2020

    Sharon2020, I hope you get quick answers regarding your CT. I’ve found that having to wait for the next thing and having delays to the plan both can be trying.

    All this talk of pumpkin patches outs me in mind of fairy tales. Your gardens sound beautiful and tranquil!

    Those of you who’ve gotten your ports, do you happen to remember what you were told regarding lifting things? I get my port tomorrow and will ask, but I’m wondering how much help I need to have in place next week (before I even start infusions) if I’m not supposed to lift anything over 10 lbs—I have an 11 month old.

    So glad to have the advice about soup and broth. I will pick some up before the fun begins next Thursday

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  • mtspacekace
    mtspacekace Member Posts: 157
    edited July 2020

    annathebrave:

    My sirgeontold me there was no real limitations after getting the port. I asked if I could golf... and he said if you feel up for it you can. He did say no swimming or soaking for 2 weeks after getting it, and that was it. I had more restrictions after getting biopsies.

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  • Iamloved
    Iamloved Member Posts: 228
    edited July 2020

    Sharon2020 Sorry to hear you had to reschedule. What happened? The fasting went well. From Saturday evening until Tuesday after chemo. I hit a bump getting my port in Monday morning. When the RN asked the last time I ate I told her and she couldn't believe it that someone could go that long. So she did a glucose test and sent it the doctor who immediately ordered a 50 ml of dextrose be put in me. Sent my sugars to 155. I was so 🤬 By evening I was back down to normal. I am not sure how that effected the fast but continued it Tuesday until about 6pm. We stopped at a gas station on the 2 1/2 hour drive and I had my hubby get me a stick of cheese. So I went from that to Wednesday at 11:30am. Day 3 and feeling pretty good. I am anxiously awaiting day 4 and 5 as I understand that can be the worst. One round of diarrhea but 2 imodiums took care of that.

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  • Shar2020
    Shar2020 Member Posts: 234
    edited July 2020

    Thank you, AnnaTheBrave and Iamloved. The CT results indicated that additional follow up was needed for the liver, lungs and heart so chemo will start on July 23.

    AnnaTheBrave, the talk about pumpkin patches does sound like fairy tales. It's enjoyable to read about everyone's gardens. Wishing you the best with tomorrow's port placement.

    BlusteryDay, wishing you well with your port placement tomorrow, too.

    Wow, Iamloved, you fasted a l—o—n—g time. Despite the dextrose, it sounds as if the fast was still helpful. Do you plan to do it for every infusion?

    Good night, everyone.

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  • Iamloved
    Iamloved Member Posts: 228
    edited July 2020

    Sharon2020 I do plan on fasting for each one. It really is not hard. 36 hours of the fast is probably the hardest but nothing crazy. Our bodies are quite amazing and adaptive. Fasting boosts our white blood cells, recycles damaged cells to regenerate healthier cells, all sorts of wonderful things happen when we give our gut a break. And speaking of that these steroids must be making me crave sweets. I am indulging the cravings with sympathy because I had chemo. Well that stops today! I have had no changes to my tastes buds or have I had any aversions to food. Day 4 today so we will see if anything changes.

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  • Shar2020
    Shar2020 Member Posts: 234
    edited October 2020

    Iamloved, yes, fasting has many benefits. I am especially interested in the cognitive benefits. Plus, now the benefits for cancer and treatment.

    I am glad to read your first infusion went well. Hopefully, side effects remain minimal.

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  • Smichaels11
    Smichaels11 Member Posts: 132
    edited July 2020

    Hi ladies, hope everyone is doing well. The past week (week 3) I have been feeling great. Food has taste, I am less tired, and haven't had to take any meds. Just in time for my next round on Wednesday, lol. My hair has REALLY started to fall out. Everytime I touch it I get a nice clump in my hand. I've held out from shaving to wait for my sister in law who wants to shave her head with me but was on vacation. Shes coming over later this afternoon to do the big shave! Gah I am ready but not ready, if that makes sense. My head has been terribly itchy and I haven't washed it, but it also feels so definitive. Theres no turning back after this, and I will now LOOK sick. I wont be able to just run out to the grocery store. I plan to wear a wig, as most of my workdays are spent on Zoom meetings and I'm simply not brave enough to be seen bald.

    I hope I can gather some strength to get through this marathon of treatment. I am happy to have found a place where others are going through it as well.

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  • Shar2020
    Shar2020 Member Posts: 234
    edited October 2020

    Smichaels11, I am glad to read you have been feeling great for a week.

    Yes, the “ready, but not ready" makes sense re: your hair. I am relieved for you that your sister-in-law will be with you instead of being alone at the hair salon.

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  • Iamloved
    Iamloved Member Posts: 228
    edited July 2020

    Day 5 and 6 have kicked me to the curb! The big D for about 24 hours. Body aches(from Neulasta?) Tired beyond tired. Tonight I am getting more mobile but still queasy feeling. Is this all due to meds being stopped on day 5? I know I went over the recommended amount of imodium in a 24 period. I was doing pretty good until this!!!

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  • Smichaels11
    Smichaels11 Member Posts: 132
    edited July 2020

    iamloved, were you prescribed any meds for diarrhea? I was told to try imodium first, but was also given medication if it became unmanageable. If not, it's worth calling and asking!

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  • mtspacekace
    mtspacekace Member Posts: 157
    edited July 2020

    iamloved:

    Day 5 and 6 were the absolute worst for me. I called my dr and he worked through all side effects and what I could take for each one... He said I could still take the nausea meds, Tylenol for the bone aches, and he gave me a prescription antacid as well because I was having stomach pain every time I ate something. I would call your dr...don’t suffer thru it! I felt a million times better after being able to take something...especially for the bone and stomach pain.

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  • BlusteryDay
    BlusteryDay Member Posts: 57
    edited July 2020

    I hope everyone is doing well! I'm on day 4 of my first DD AC cycle and I'm exhausted. But, I'll take exhaustion over nausea and vomiting - and GI issues - ANYDAY! Happy Monday!

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  • Iamloved
    Iamloved Member Posts: 228
    edited July 2020

    I woke Hubby up early this morning and told him I needed to go in to the hospital. My fear was traveling the 18 miles to the hospital without a bathroom. He called the 24 hour nurse line where I am receiving treatment and they told him I could take up to 17 imodium a day. So I took 2 more. My oncologist's nurse practionor called this morning to see how I was and she told us no more than 8 per day. WTH! Still struggling with this diarrhea...3 days is very hard on this old body. Just don't understand why. I was drinking lots and then BAM! I am glad to hear others are doing do well! My prayers for all as we battle thru these treatments.

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  • Trynryan
    Trynryan Member Posts: 20
    edited July 2020

    Iamloved, I am sorry to read about the continued diarrhea. I had a challenging week last week, really days 6-10. Diarrhea, lack of taste, heartburn, leg pain, rash, bloody nose, and a period that did not stop for 10 days. I felt like I was playing whack a mole with something popping up every day! I half jokingly told my sister I had a current issue with every orifice except my eyes and ears. The good news is the last 2 days (day 12 and 13) I feel like a fog has been lifted. The fatigue is gone, I have a big appetite and while still having diarrhea it was managed yesterday with just 2 imodium and none today. I am so hoping for 10 days of close-to-normal before going back July 30. I hope you all are feeling better soon.


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  • Smichaels11
    Smichaels11 Member Posts: 132
    edited July 2020

    So I did the big shave yesterday. It was bittersweet, but needed. I showered after and OMG did a ton more hair come out. I now look a little mangey, lol. I wore my wig for the first time today (I work from home right now, but am on Zoom calls all day on camera) and it was so hot! I hope I get used to wearing it soon! My son is not a fan of the wig. Hes not a fan of my shaved head either so I cant really win with him. Hell just need to get used to the new normal for now. Its blonde and my natural hair is very dark, but I wanted to try something new and fun.

    How are you ladies fairing with your hair? I think I might be ahead of many of you since I had my first treatment on 7/1. I am hoping and praying I dont lose my eyebrows or eyelashes. They are dark and I will look nuts. Someone mentioned on another thread that TCHP treatment doesnt usually take brows and lashes and I really hope they are right!

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  • BlusteryDay
    BlusteryDay Member Posts: 57
    edited July 2020

    iamloved, I’m so sorry to hear about your ongoing GI Issues! That’s terrible when they give conflicting advice, too...we don’t need the confusion right now. My nurse told me no more than 8, also. If it continued they could prescribe Lomotil. Is that an option?

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  • BlusteryDay
    BlusteryDay Member Posts: 57
    edited July 2020

    SMichaels11 - I’m behind you by 2 weeks, I think...still haven’t shaved my hair. I’m taking everything one day at a time and haven’t really thought much about the hair, yet...other than buy a couple of beanies.

    I’ve been traumatized having to long-term board my parrots for the duration of chemo. They are my babies and moving them was tough. They are in good hands but I miss them. Too much risk to have them around though and my oncologist said if I get sick, he’d rather not be trying to figure out if I have Covid or psittacosis or a type of pneumonia...as a nurse, I get it.

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  • Shar2020
    Shar2020 Member Posts: 234
    edited July 2020

    BlusteryDay, that's rough to have to board your pet birds during your treatment. Pets add so much to our day-to-day lives. Will you be able to visit them or see them on Zoom?

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  • Shar2020
    Shar2020 Member Posts: 234
    edited October 2020

    Smichaels11, great idea to go with a different hair colour to try something new and fun. It sounds uncomfortably warm to have to wear the wig for online Zoom meetings all day.

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  • Shar2020
    Shar2020 Member Posts: 234
    edited July 2020

    Trynryan, that sounds miserable, but I am glad to read you have been starting to feel better. I hope you have a pleasant week leading up to your next treatment.

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  • Shar2020
    Shar2020 Member Posts: 234
    edited July 2020

    Iamloved, I hope you are having relief now from your lower g.i. problem. Is anything helping it now?

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  • Shar2020
    Shar2020 Member Posts: 234
    edited October 2020

    Probiotics...has anyone in your cancer care teams offered an opinion about whether or not it is safe to take them during chemotherapy?

    There are very reputable cancer clinics that recommend probiotics during chemo and others that say probiotics increase the risk of infection.

    I would be interested in hearing if any of you have information about this or been advised for/against probiotics. Thank you.

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  • Iamloved
    Iamloved Member Posts: 228
    edited July 2020

    Sharon2020 Today was better. I hope I turned the corner to recovery. Oh I dont know if I can go through that again 5 more times. Does anyone know how to head that Big D off?

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  • Shar2020
    Shar2020 Member Posts: 234
    edited August 2020

    Iamloved, I am glad to read that today was better. BlusteryDay mentioned a prescription medication, Lomotil. Ask if that's an option. I do not know if the BRAT diet (Bananas, rice, applesauce and toast) is useful for this type of diarrhea. It is sometimes effective for other types.

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  • Smichaels11
    Smichaels11 Member Posts: 132
    edited July 2020

    Iamloved, if I were you I would call and request a prescription for Lomotil. It was part of my package of drugs I received before chemo to manage side effects and it's much more effective than imodium.

    I am headed in this morning for chemo #2 today. Wish me luck!

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  • Shar2020
    Shar2020 Member Posts: 234
    edited July 2020

    Best of luck, Smichaels11, as you have your second infusion today.

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  • Smichaels11
    Smichaels11 Member Posts: 132
    edited July 2020

    Thanks, Sharon! I'm in the infusion room now. Here's a picture of me in my new wig!

    image

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  • Iamloved
    Iamloved Member Posts: 228
    edited July 2020

    Thanks for the RX tip. I will ask at my next infusion.


    Sharon2020 So weird that I have no desire to eat Keto like I have for 2 years. I did try a banana and had a great desire for a Carmel roll😋 which Hubby did bring home for me yesterday.


    Smichaels11…You look great! You are so positive about your journey! I pray this round goes smoothly for you. 2 down🤗

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  • Shar2020
    Shar2020 Member Posts: 234
    edited July 2020

    Smichaels11, you look beautiful! By the time you read this message, another infusion will be finished! Thinking about you and hoping all goes well.

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