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Starting Chemo May 2021

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  • blmike
    blmike Member Posts: 195
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    Sorry that Girlbond007 and AwaysMeC are having such a tough time. Hopefully, things will get better. Fingers crossed.

    Hair is really falling out in major clumps here. Polly has no hair on the top of her head and will likely be completely bald by week's end. Even knowing this would happen and expecting it, it's still somewhat of a shock to both of us. None of the hair covers she ordered from headcovers.com have arrived. We ran out today and bought some hair coverings from a local wig shop. She gets more blood work tomorrow and hopefully her white blood count will be high enough to restart chemo on Friday.

  • STJA16
    STJA16 Member Posts: 55
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    Girlbond007, welcome. We are here for you.

    BLMIke, glad you got some head caps for her. I decided to cut my hair tomorrow so i won't fee the long hair falling out. I am not even sure it that will help but i will try. Its going to be a tough day.

    I also heard somewhere that shaving the head makes the hair grow back in different directions that it was before. I was told to cut my hair and allow it to fall out and to use a baby's soft brush to brush as it falls out. I don't know really what is best, but that's my plan. And a bunch of tears.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    Today is day 6 post 2nd chemo. I have to say, I was immediately fatigued after this one. The steroids barely kept me awake this time. Same GI symptoms, but I was able to head them off knowing what was coming. I'm feeling better today, which hopefully translates to more "regular" days. I don't know if it's in my head, but I think the bone broth is helping. Sleeping through it also helped.

    I have to be honest, day three and four were pretty rough. I kept thinking I can't do this again, but by the fifth day, thank God I was able to get up and think okay maybe I can.

    BLMike, I'm sorry Polly is losing her hair. I am capping with the Paxman system, but it's not going well. I've already lost close to 80 percent of my hair and it's shedding a lot. I may be embracing the bald here pretty soon as well. I'm already sporting a lovely comb over.

    STJA16, I'm letting it all fall out too. But it's hard. I might give in and have my little ones help me shave it soon.

    Please keep sharing. I know commisserating kind of sucks, but I'm glad to hear everyone is getting through it. There's ups and downs, but we can get through those "I just can't anymore" days.

  • STJA16
    STJA16 Member Posts: 55
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    AlwaysMeC, I agree, it does feel good, kind of therapeutic to hear the good and the struggle as we all go down this journey. Someone that knows what you are going through helps. Glad you are feeling better today. It can only get better tomorrow.

    Just talked to my Oncologists office and they indicated my Neutrophils are too low to consider attending my daughter's college graduation this weekend. They called it Neutropenia. I am beyond devastated. She is graduation Summa Cum Laude, 4.0 GPA. I honestly have no words for this. She understands but is also hurting. The good news is I did attend my sons graduation a few weeks ago, Magna Cum Laude. Yes they are twins. Tough day.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    STJA16, congratulations to you as a mom and to your kids on reaching their latest milestone and achievement of many more to come. They sound like great kids!

    The age difference between our eldest and youngest is 19 years. He graduated college last year during the beginning of the pandemic. His school was in Boston and when Harvard announced no school, the other schools quickly followed suit. He was one of the first sets of students to be sent back home. It was heartbreaking not to be able to see him walk and celebrate like we had planned, but in light of things recently, I am glad that I was around to support him however I could.

    I hope your counts go back up quickly. I have been trying to eat things like mushrooms, broccolis, and brothy soups to help my body rebuild.

  • blmike
    blmike Member Posts: 195
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    Oh STJA16 -- that's so terrible about missing your daughter's graduation. Just another sacrifice this disease extracts from it's victims! Is there any chance, they're going to live stream it? Polly and I watched our niece graduate from college last week via the web. Not as good as being there but better than nothing. If it's not live streaming, maybe a family member can FaceTime or otherwise video conference you in to see your daughter actually receive her diploma?

    AlwaysMeC -- Sorry about the hair. Polly's been able to get comfortable with head coverings in just 24 hours or so. Hopefully, you'll similarly adjust also.

    Good news here! Polly's white blood cells have recovered to the point where she can restart chemo on Friday. WooHoo! Never did we think we'd be celebrating chemo, but here we are.

  • annsoptera
    annsoptera Member Posts: 27
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    STJA16 - I'm just adding my words of congratulations on your children's amazing accomplishment. You must be beyond proud of them. As BLMike suggested, I hope that there are some options for you to see the ceremony. So many people are in your position of not being able to risk in-person events right now, so I hope they are accommodating. I streamed my niece's law school graduation last weekend and was able to send her cheering texts when they called her name, which she really seemed to appreciate. But I know it's tough news when you really wanted to be there. I hope your numbers improve soon.

    The advice I've heard about managing the hair loss progression is to do a short cut first (especially if you have really long hair), then a buzz cut with a #2 blade (rather than shaving down to the skin) and let it fall out from there. I haven't heard that shaving affects regrowth direction, but I did find useful information about the hair growth and loss cycles on this website. https://www.cancerhaircare.co.uk. It was the first place I saw an explanation of "chemo curls" (the shape of the follicle can change). I'm also using Paxman cold cap, but losing so much hair every day (the results vary widely among users) that I'm not expecting to avoid that #2 blade in the near future. I'm okay with it.

    BLMike - That's fantastic news about Polly's counts and getting the chemo back on track!

    AlwaysMeC - I just did my second TC infusion today, and I'm feeling okay so far (no doubt thanks to steroids, etc). I'm glad that you're feeling better after a rough couple of days. I hope the rest of this cycle goes okay for you.

  • txlorelei
    txlorelei Member Posts: 68
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    Taxol #2 is in the books. They did the infusion over 2 hours with zero problems. Then I came home and took a 2 hour nap. I don’t have any nausea but my appetite is low. Last time I needed some Imodium on the next day but few side effects overall.

    Is anyone else working full time during chemo? My MO wants me to work remotely as much as I can. My office has ended mask requirements but some of us are still wearing them. My current plan is to go in on Wednesdays when we have my department staff meeting. I’m extremely fortunate that both my boss and HR have been very supportive.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    I work full time on a 10 hours 4 days shift, but I've been working from home since 2016. However, I am not taking much time off. It's because my company only gives me 15 fully paid days for FMLA, while temp disability will only cover 60 percent of my check. We have unlimited paid time off, but job security only comes with taking FMLA. My manager let me know that I can rest throughout the day if I needed.

    If I did have to go in, I think my main concern would be that masks are no longer required in some enclosed spaces when the person is vaccinated. But it's not like we can force people to be truthful about their vaccinations. However, my mom has worked with two women that were undergoing chemotherapy and they did well, even confined to cubicles in a tight space.

  • annsoptera
    annsoptera Member Posts: 27
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    I'm working full-time as well but largely remote. My boss is basically supportive but we're so understaffed that there are no options for getting coverage, support, etc. I spend about one day a week in my office (we have had a rotation schedule anyway due to the limited building capacity), and most of my meetings are still being held via zoom. The timing of chemo has worked out such that I'm not in the midst of my usual packed daily schedule of teaching & meetings right now, so I'm hoping that it will be manageable. I've scheduled my infusions for mid-week with the hope that the worst of the fatigue and side effects fall on the weekends, but I saw from my first round that it's not easy to predict the course. I'm lucky in that I can keep my office door shut and my in-person interactions pretty minimal (all of which are still masked) so I'm not too worried about potential infection from others when I'm in the office.

    I'm on day 5 of TC #2 and so far I've avoided the killer headache I had last time (MO's office told me to alternate Advil & Tylenol every 6 hours). I also haven't had bad mouth sores this time but I'm being proactive for that as well by doing the salt & baking soda and Biotene rinses throughout the day. I'm pretty tired, have mild nausea, and the tastebuds are dead which also kills the appetite but I'm trying to eat something every couple of hours. I'm hoping to feel better over the next couple of days.

    I hope everyone is feeling well this weekend. Best of luck to everyone doing treatment or recovering from it this coming week.

  • STJA16
    STJA16 Member Posts: 55
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    Hi all,

    Thanks for the encouraging words. I was able to watch the graduation online. It was beautiful. She said she was thankful I was not there as covid guidelines were not always followed.

    C1D14 and i am starting to see some hair fall out. Looks like i got my hair cut at the right time.

    Glad to hear Polly's counts came back up. That gives me hope for C2.

    Hope you all had a great weekend.

  • blmike
    blmike Member Posts: 195
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    STJA16 -- I'm SOOO happy you could at least see the graduation. Not as good as being there, but better than completely missing it. You have much to be proud of.

    Week 3 update here: Polly had chemo on Friday. For some reason, the SEs weren't as bad this time. I'm not sure what that means.

    In less than a week, she's lost virtually all of her hair. Although she has a few scraps left, she's basically bald. Although she's self-conscious about it and wears a cap or scarf even around the house with me, I wish she wouldn't. I've already gotten used to it, and it's really no big deal.

    Instead of a 3-week on chemo and 1-week off, she's going to be on a 2-week on and 1-week off. They didn't give her the WBC patch this week because of some timing issue. Hopefully she'll start that this coming week. Meanwhile, we've got to watch her WBC this week also.

    Happy Memorial Day to all!

  • moderators
    moderators Posts: 8,219
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    TODAY: Zoom virtual meet-up for people going through chemotherapy (caregivers welcome)

    Tuesdays 1:00-2:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting

    After registering, you will receive a confirmation email containing information about joining the meeting.

  • STJA16
    STJA16 Member Posts: 55
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    BLMike, Happy to hear Polly did not have those side effects again. Hoping for the same with my next cycle.

    As for the hair. I also wear a cap or my wig around the house. I am just not ready to go without. So I get her wearing it. She is not trying to hide it from you. For me it maybe that I dont want to see that look in my husbands and kids eyes, even though it may not be there. Maybe one day not not yet.

  • steffun1
    steffun1 Member Posts: 1
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    I was told by the Oncology Nurse to suck on ice during the Taxol infusion and it would help with mouth sores.

  • Girlbond007
    Girlbond007 Member Posts: 3
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    Hi all,

    Posting an update. I had my second infusion of TCHP almost two weeks ago. From day 5 to day 12 I had GI issues. Severe stomach cramps and diarrhea. I would eat and then a few hours later I’ve stomach cramps etc.. I was treating this with Imodium and it helped but I finally decided to see an acupuncturist. Went on Friday and it really helped. I feel human again. I was almost getting to a stage where I was not wanting to eat at all. Of-course this is also about time that I do start to feel good again. Third week after infusion is the best week for me. But I have decided that I am going to go for acupuncture at least twice a week. Makes me feel like I am doing something positive for myself. I also think it cannot hurt. Of -course my MO said okay.

    I also wanted to share my experience with cold capping. I am doing the penguin cold capping. My hair is falling but not in clumps; although about 25-28 days after the first infusion I did have 4 clumps. I was getting disappointed but now it is onlyshedding. I can live with shedding.
    Hope everyone is hanging in there. Stay strong. We are going to beat this thing.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    Girlbond007, my third TCHP is this Thursday. We're on similar schedules. The second infusion is supposed to be when the most hair falls out for people using cold caps. Hopefully, it just thins from now on!

  • txlorelei
    txlorelei Member Posts: 68
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    I had my 3rd Taxol on Friday. I’ve discovered that my taste buds are “off” for a couple of days afterwards. Pepperoni and sausage in particular tasted wrong so I’m sticking to chicken.

    I had some minor tingling in my fingertips last week in spite of the icing but this week seems fine. I’m shedding more when I brush my hair in the last few days so I’m afraid this may be the week I have to cut it all off.

    Good luck to everyone

  • moderators
    moderators Posts: 8,219
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    Chiming in to let you know that TOMORROW is our Zoom virtual meet-up for people going through chemotherapy (caregivers welcome)

    Tuesdays 1:00-2:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting

    After registering, you will receive a confirmation email containing information about joining the meeting.

    Hope to see you there!

  • blmike
    blmike Member Posts: 195
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    Polly got her 4th treatment on Friday. Along with that came the Neulasta patch to boost her WBC. It is a "patch" on her underarm about the size of a dental floss pack. It was surprisingly unintrusive. She had it on for 27 hours and then the Neulasta was dispersed over a 45-minute period, and I was then able to remove it. That entire process was fairly straightforward, but she did have some bone pain for about 24 hours afterwards.

    She's been tolerating the chemo (Abraxane) pretty well. Days 2 and 3 after chemo are her worse days, but she continues to be able to move around the house and force herself to eat (typically scrambled eggs, oatmeal, English muffins, and the like). She's totally bald on her head. I think we've both come to accept that easily and quickly. She looks great in the various headcovers and scarfs she bought. Hope the rest of the May group are doing OK now that we've transitioned into June.

  • STJA16
    STJA16 Member Posts: 55
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    BLMilk, Glad to hear she is doing ok. Did she get the Neulasta shot the first 3 times and moved to the patch for this cycle?

  • blmike
    blmike Member Posts: 195
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    No STJA16, Friday was her first Neulasta treatment. They simply monitored her WBC the first 3 cycles, but since it was so consistently low, her MO decided to put her on Neulasta. How are you doing?

  • STJA16
    STJA16 Member Posts: 55
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    BLMike the Neulasta should help. I thought it was a standard that everyone got. Really made a difference for me. Fight for it with each round. They also gave me an antibiotic as a preventative for infections and fevers because my count of neutrophils was so low. Its called Neutropenia. Neutropenia with a fever typically requires hospitalization. Fortunately I had antibiotics so did not develop a fever.

    All, I started C2D1 on TC chemo yesterday. They did a blood test first as my counts were so low after C1D8. The White blood cell and neutrophil counts were extremely high above normal range which is fantastic so I was cleared for cycle 2. So far no major symptoms. Headed back today for Neuasta blood count booster shot, fluids and nausea meds. Back again Thursday for more fluids and nausea meds. Expecting more hair loss over the next days and weeks but I did cut my hair but did not shave my head.

    Kicking cancers butt one day at a time!!!!

    Hope you are all doing well.


  • annsoptera
    annsoptera Member Posts: 27
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    STJA16 - I'm so glad to hear about those great counts from the blood tests! Yes, I'm sure that was the Neulasta doing its job. I hope you're continuing to feel okay, and that the fluids & meds help to minimize the side effects.

    BLMike - It's great that Polly is doing okay and that she was given the Neulasta Onpro device this time around. I've had that for both rounds so far with no problems with the dispensing or any bone pain. I start taking Claritin the day before treatment (so 2 days before Neulasta) and I continue it for a full week after the Neulasta (per the recommendation of the nurse).

    I hope everyone else is having a good week and managing well, and good luck to those of you with treatments coming up in the next few days. We've got this!

  • blmike
    blmike Member Posts: 195
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    Looks like Polly's stint on Neulasta will be short-lived. In less than a week, her WBC has grown to a whopping 43 and her Neutrophil is 27. Rather than continue taking Neulasta, her MO believes it will probably be better to stay on the 2-week-on chemo and 1-week-off, watch her WBC/Neutophil levels, and minimize risk of illness/infection during her off weeks when her WBC will likely be low. It'll be interesting to see what her WBC/Neutophil levels are next week.

  • moderators
    moderators Posts: 8,219
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    Hug TODAY: Zoom virtual meet-up for people going through chemotherapy (caregivers welcome)

    Tuesdays 1:00-2:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting

    After registering, you will receive a confirmation email containing information about joining the meeting.

  • amy123
    amy123 Member Posts: 6
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    Hello, everyone! I've been lurking on this forum for a few weeks now. Today I finally found the courage to post. I also want to join and share my experience with you. Hope you don't mind. :)

    I started TCH+P on May 27th. I had really bad backache/bone pain, nausea, and fatigue during the first week. My body ache was so bad that I couldn't fall asleep. I used massage and acrobatics exercise to deal with the body ache (none of the drugs doctors gave me worked). Though, all the side effects slowly went away after 2 weeks. Except that I had blurry vision the day after chemotherapy. I feel like my vision has decreased a bit. My oncologist said it's the side effect of Dexamethasone. She lowered the dose for the next treatment. I'm seeing an optometrist tomorrow just in case. I also seem to lost my sense of taste. I could barely taste anything or everything taste very very bland. (Hopefully it will restore when chemo ends.) My hair is falling off. After I took a shower yesterday, I collected a bag full of hair from the tub. It was crazy. I got a Pixie cut so that it won't be so messy when I shed hair. I also got a wig ready. I'm expecting to be bald very soon. :( This Thursday will be my second treatment. :)

    Reading your posts makes me feel so much better. You are all very positive and kind. Hope everyone's treatment goes smoothly and manage side effects well! Good luck!

  • mainejen
    mainejen Member Posts: 148
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    Hi, SylviaStrives, Thanks for finding the courage to post. I started my first chemo on May 21st. The first week was horrific. Truly. I couldn't sleep either. Just misery beyond words. I'm also having trouble with the desamethasone. We'll see. I may lower the dose for my 3rd treatment. I had my second one last week. Like you, I can hardly taste anything and my hair is almost gone now. I hope your 2nd treatment tomorrow goes smoothly. I had a really bad nurse who dug around in my arm with great insensitivity - looking for a vein - 2 times until I told her to stop. Then I wept. Then she told me I need to take anti anxiety meds next time. Instead, I talked to the nurse manager and said - it isn't that I need meds. I need a competent, sensitive nurse. This same nurse literally said to me "it could be worse, you could be in hospice." Not even kidding that happened - while in chemo tx. Anyway, my first infusion I had the best, most angelic nurse. So I am not going to let that happen again. Goodness! Like we're not going through enough already, right? Anyway, here's to hoping you find a way to get through the challenges for round 2 - as best you can. It's a rough road. Yikes. But we'll make it. Right? Right. WE're all here for you. Thinking of you tomorrow.


  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    It's been a few days since I last commented here.

    BLMike, how is Polly doing so far? I remember coming across a post about someone here who also had unexpectedly very puzzling high counts after Neulasta. It seems rare.

    SylviaStrives and MaineJen, I just completed my third TCHP last Thursday. I too have been getting blurry vision in my left eye, especially the day after, and it seems to be getting worse. I was also told it was the dexamethasone that contributed to it, but that it will improve after TCHP is done.

  • blmike
    blmike Member Posts: 195
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    Welcome Sylvia -- Sorry you have to be here and that you've had such SEs. Hopefully a lower dose will help.

    Oh MaineJen -- Your experience sounds absolutely horrible. I can't believe how insensitive some people can be.

    AlwaysMeC -- Thanks for asking about Polly. She met with her MO yesterday, and although her liver enzymes are up, her MO doesn't necessarily believe that's an indication the Abraxane is no longer working. She did order a scan though to see what exactly is happening. Scanxiety is starting to kick in already! LOL. Her MO did say that there were other chemo options if the Abrasane is no longer working so that made us feel a little bit better, but Polly is tolerating the Abraxane so well that any potential change will bring SE-anxiety. LOL. Good luck with her 3rd TCHP treatment!