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July 2020 chemo club

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  • mtspacekace
    mtspacekace Member Posts: 123
    edited July 2020
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    Star...I got the wigs from Heatherdye.com or she also has a Facebook group Wigs for every woman, where she does fun live videos and you can snag some good wigs. I’ve never worn a wig before, but they fit snug, are different sizes so you have to measure your head, and they pass the headbang test!

    I felt out of sorts on the steroids after my first infusion...barely sleeping, couldn’t nap, but I think it was first day of chemo jitters. This second time I’ve been able to sleep and much more tired! With TCHP I have steroids the day before, day of, and day after the infusion. I met with my infusion nurse and oncologist a week before my first infusion and I had a whole list of questions to ask them, they sent all my prescriptions, and explained them to me, and showed me the infusion room.

  • melbo
    melbo Member Posts: 266
    edited July 2020
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    I just looked at my prescriptions under mychart and it does list decadron -- however the prescription just says take for 2 days starting the day after chemo.

    I'm meeting with my oncologist on the 6th and I will be writing down the questions I have between now and then. Any suggestions on questions I should ask? I think that meeting will also include a visit to the chemo room to see everything and will hopefully include some full descriptions of what I should expect.

  • millie5
    millie5 Member Posts: 19
    edited July 2020
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    Smichaels11, thx. I should do the lab again tomorrow and we'll see. I did the lab on July 28th, and I'm a bit skeptical it can significantly change in 3 days. No vitamins, supplements or anything... just regular food an activities. And you're right about the frustration. I've finally (kind of) gotten over my hair loss, and now this.... I knew it wouldn't be easy, but sometimes I need more time to process multiple bad news ...


  • shar2020
    shar2020 Member Posts: 196
    edited July 2020
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    Millie5, sorry to read your infusion was cancelled. It's difficult/exhausting to mentally build yourself up for it and then have it cancelled. I hope it can go ahead with your next bloodwork. Did they mention any foods that will help to improve it?

  • shar2020
    shar2020 Member Posts: 196
    edited July 2020
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    Melbo, that's great your bone scan came back clear, although it sounds frustrating that the process wasn't explained to you.

    I have heard a couple people say they had their port put in the same day of their first infusion and it went well. They said the i.v. sedation for the port made them sleep through part of the infusion which they liked because it made the time seem faster.

  • shar2020
    shar2020 Member Posts: 196
    edited July 2020
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    Smichaels11, I just read your comment that the steroids caused “crazy acne” and is ok now. That’s great it’s ok now.Your skin looks perfect in your pictures. My face reacted so badly to something since my first infusion that I have a dermatology referral. Whoa, what a mess! I’m heading out today with a brimmed hat, hair pulled down around my face to cover it and a mask. The only thing showing will be my eyes! 👀

  • millie5
    millie5 Member Posts: 19
    edited July 2020
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    Thx Sharon, nothing special about the food - just healthy food with a lot of fruit and veggies. I've also googles for the recommendations. Unfortunately, in my Oncology center, the staff is not over-attentive :(

  • shar2020
    shar2020 Member Posts: 196
    edited July 2020
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    That's unfortunate, Millie.

    That's a good idea to try to do it with food instead of supplements, unless recommended by your doctor, because there is an article here at breastcancer.org about risks associated with supplements and chemo. I will see if I can find the link for you.

    Here's the link: https://www.breastcancer.org/research-news/supplements-before-and-during-chemo-risky

  • trynryan
    trynryan Member Posts: 20
    edited July 2020
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    I'm just finishing up my 2nd infusion. Things are going pretty well. At my provider visit my physical exam shows an approximate 40% reduction in primary tumor size after just one treatment! That is great news. I had my labs done and my hemoglobin dropped 2 grams in 3 weeks so we will watch that as it is causing some dizziness. It’s likely from a never ending period since getting my 1st infusion 3 weeks ago. Everything else is looking good. I did have a reaction to one of the drugs in my chemo regimen (Likely herceptin) which caused me to feel like I can't swallow. That was fixed with more prednisone and some Ativan. That should mean later today I will have a lot of energy to clean the house but be relaxed enough not to care. Haha. All is well.

  • iamloved
    iamloved Member Posts: 197
    edited July 2020
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    I have only had 1 treatment and the steroids and benadryl were given thru my iv.

    millie5... my biggest fear as I plan for next week's treatment is not making labs especially if I am fasting as it lowers white blood cell counts. I am sorry you had this disappointment. I know have the final treatment in October and will be very sad if I have to go longer. I want my surgery to remove this cancer as quickly as possible. Prayer that next time your blood work is perfect.

    Lastly I went to my stylist today and had her buzz my hair. I teared up but quickly stopped and told myself my hair does not define me! She trimmed my wig a bit and I left wearing feeling pretty good. I know the most traumatic part of hair loss is left...complete baldness but my wig feels comfortable and I like the style.

  • iamloved
    iamloved Member Posts: 197
    edited July 2020
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    image

    image


  • millie5
    millie5 Member Posts: 19
    edited July 2020
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    Thx for the links Sharon, saw that one. I'm on Anthracycline and Cyclophosphamid, so definitely will stick only to food recommendations.

  • millie5
    millie5 Member Posts: 19
    edited July 2020
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    Thank you all girls for your payers and nice wishes.

    IamLoved, you look perfect! And the wig looks very natural.

    I got used to the 'new me' in less than 2 days. Although I still haven't seen myself without my head covered. It takes time for me, but I'm in no rush.

    As for the fasting, I don't have experience with that. I ate more or less normally, reduced meat a bit and increased fish. A lot of fresh fruit and veggies, included pork and chicken liver. Completely thrown our sugar, sweets. White flour replaced with buckwheat, graham and spelt flour). No fried or fatty food (I haven't eaten these earlier, either). My leukocytes dropped from 4.7 to 3.4 (normal values 3.9 to 10.0), and my neutrophil granulocytes dropped from 2.3 to 1.3 (normal values 1.6 - 7.0). And that's just after one therapy.

    Maybe you could do a lab check some time before the next therapy is due, so you can reconsider whether to continue fasting or not.


  • millie5
    millie5 Member Posts: 19
    edited July 2020
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    Trynryan, congrats for the great news! That's so lovely to hear! Keep up the good work.

    I hope that all the side effects caused by drugs will go away soon. At least you have satisfaction of 40% reduction!



  • shar2020
    shar2020 Member Posts: 196
    edited July 2020
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    Trynryan, a 40% reduction after only one infusion. That’s great! I am very excited for you!

  • shar2020
    shar2020 Member Posts: 196
    edited July 2020
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    Iamloved, you look lovely. That style and colour look fantastic. I would never have known you were wearing a wig.

  • shar2020
    shar2020 Member Posts: 196
    edited July 2020
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    Did anyone feel kidney pain on both sides of their middle back after an infusion? My infusion was a week ago, but I am only just feeling that discomfort today and yesterday. It's mild so I am drinking a lot of water and resting.

  • brittonkb
    brittonkb Member Posts: 81
    edited July 2020
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    Hi ladies ... newbie here! 48 year old wife and mom of two teenagers.I will get my port early Monday morning (8/3) with chemo following on the same day. I'll have 4 AC treatments (every other week) followed by 12 weekly Taxol. God willing I'll finish on 12/14. Then radiation starting in January. I've started reading through these threads and have found them very helpful. I was diagnosed in late April and have had 2 surgeries thus far. It still feels so surreal. I definitely don't feel 'sick' but I'm sure that will change soon enough!

  • kmom57
    kmom57 Member Posts: 178
    edited July 2020
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    First time tomorrow. I’m so scared. And feel so alone. I’ve read everything I could, thinking if I could know what to expect I could do it. But right now I’m honestly not sure I can. Scared about the whole day, but even more scared about the days after. I’m a single mom. No help becaus of covid.

  • shar2020
    shar2020 Member Posts: 196
    edited August 2020
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    KMom57, yes, it is scary, but you can do it. How old are your children? Do this for yourself and your child/children.

    Having a child/children in the household adds extra challenges, but we will support you and offer solutions and suggestions when you need it. You can do this!

  • shar2020
    shar2020 Member Posts: 196
    edited July 2020
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    Brittonkb, welcome and wishing you well as you get a port and your first infusion on Monday. There is a very supportive group of women here!

  • Smichaels11
    Smichaels11 Member Posts: 112
    edited July 2020
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    Oh Kmom, I am so sorry you are feeling this way. Know that the unknown is the scariest part and you CAN do this. We talk about our symptoms, and yeah its no walk in the park, but we're functioning and taking care of ourselves and our families as well. You are going to have bad days, but there are ways to adapt and meds to help with the side effects. Plan ahead as much as possible. Premake meals when you feel up to it. Have Popsicles for dinner when you don't. This is just going to be a few months of not feeling your best so that you can go on living the rest of your life with this as an experience behind you. We are all here in your pocket as support whenever you need it. Lord knows we all need a little pick me up from ladies who are going through it. Its chemo, not Disney world, but it doesn't mean you're going to be glued to the toilet sick as a dog. You got this!

  • blusteryday
    blusteryday Member Posts: 49
    edited July 2020
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    Kmom, I’m so sorry you’re going through this alone. I can’t say it any better than the ladies before me... prep when you can and just do your best, even if it IS just popsicles or frozen pizza for dinner.

    I have been absent since last week, only because I was relishing I’m feeling so GOOD. I have been fortunate the last 4-5 days and have napped a little, cleaned house, caught up on laundry, prepped meals and grocery, etc. I don’t remember feeling this good within the last year.

    Today is AC infusion #2. Yes, the long commute. My husband is driving me to/from. We are so fortunate that the company he works for has a branch office near MD Anderson in The Woodlands, so he can work there while I’m in clinic. So many others are having to sit in the blazing TX heat in the parking lot, cars running...waiting. And it makes me so angry about Covid and lack of appropriate response and adaptation. On a good note, my feathered children are near the clinic, too, so he can go check on them for me today.

    Sharon2020 - kidney pain...your question caught my eye because I had right side flank pain on Day 9, that scared me and made me question a kidney infection. It did go away once I repositioned and relaxed in bed, so mine turned out to be muscular but I’m still asking the NP about it today.

    Biggest, most bothersome side effect for me: my migraines/headaches are back after being controlled by diet (Keto/low carb) and exercise for the last 3.5 years. So more tweaking needed there.


    I’m thinking about all of you!

  • kmom57
    kmom57 Member Posts: 178
    edited July 2020
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    Thanks to all of you who encouraged me. One is in the bag. Three to go. Other than freezing until I was shaking, it was not too bad.

  • Smichaels11
    Smichaels11 Member Posts: 112
    edited July 2020
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    Kmom, way to go! Yep those infusion rooms are COLD! Hopefully they were able to give you nice warm blankets (or next time take your own). I hope you get plenty of rest today and know we're thinking about you! Many of us have 6 infusions plus a year of immunotherapy in our future, so you're already ahead of us SillyHeart

    Blustery, that is awful that the caretakers have to wait in their cars!! My SO drops me off and picks me up since we're only about 40 mins from the clinic, but there is a sitting area he could wait in if he needed to. This whole COVID crap is really changing everything. I would really love it if he could sit with me to keep me company and see what is happening. Our spouses are a part of it too, ya know? I will be sad ringing that bell in October by myself.

    Sharon, that was weird about your kidney pain! I hope it was just one of those weird body pains we can't explain and mean nothing.

  • kmom57
    kmom57 Member Posts: 178
    edited July 2020
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    SMichaels yes they gave me piles of blankets but between the cold cap on my head and the ice packs on feet and hands it did not help much. I'm a popsicle. Freezing. Nurse says my lips are actually blue. Next time I'll bring an electric blanket

  • brittonkb
    brittonkb Member Posts: 81
    edited July 2020
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    KMom57 glad to hear your first infusion went ok!I will have my first on Monday.

    Maybe a dumb question ... what are the ice packs for? Nobody mentioned to me when I went in for my “Chemo 101" session but maybe it's an optional thing that I should consider? Or based on your type of chemo? Just trying to prepare myself. I Hate being cold.

  • kmom57
    kmom57 Member Posts: 178
    edited July 2020
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    BrittonKB. I am having TC. I had read here that some people report success at minimizing the potential for neuropathy by using ice packs or ice on feet and hands. Doc said I did not need them, but was ok with it, but I figured what can it hurt. Worse case is I wasted money and was more cold and uncomfortable than I needed to be. Best case, it works. So I did them. The nurse was happy to help and seemed well versed in them. I need more though as they got too warm too quick.

  • kmom57
    kmom57 Member Posts: 178
    edited August 2020
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    BrittonKB. Forgot to say good luck on Monday. The ladies here were right. It’s not Disney, and I’d never choose this but it was not nearly even a tenth as bad as it was in my mind.

  • Dubhain
    Dubhain Member Posts: 17
    edited August 2020
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    Got my port last Monday my first infusion today. Cytoxan and Doxorubicin. Anti nausea and steroids first. Immediate bloating but that's probably the constipation. A little dehydration, but not sure if it's a side effect or coincidence. Took Claritin and Aleve last night as recommended, will take tonight and tomorrow is well. This will be every other week for four doses and then the 12 weeks of the Taxel. Got the Neulasta in the stomach area. Supposed to be 27 and 28 hours for the medicine to be administered.


    Picking up one of my wigs tomorrow and a sleep cap, so hopefully the side effects will be tolerable or at least manageable while I'm out and about. My insurance company will cover part of the cost and I also got a little bit from an organization called wigged out AZ inc so that definitely helps.