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Starting chemo June 2021

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  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    well I had my head shaved. And it’s amazing how much hair is coming out- very short pieces of course. I can’t imagine if it were still long. It’s definitely hard. I like my wig a lot but I’m very self conscious. I’m not super confident in my caps yet either. I guess it will come in time.

  • Paki
    Paki Member Posts: 5
    edited July 2021
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    @ Hangryflower:

    Thank you very much for sharing your experience! Yeah, it for sure comes down to personal preference. I'd say I took the middle-of-the-road approach of controlling how I went bald. I had longer hair, and I heard it's easier to transition if I cut it short before chemo, to get used to having short hair first, then it wouldn't be too much of a shock when my head gets completely bald. I wasn't ready to shave, so I had it cut really short about 1 week before my 1st treatment. I figure it would probably be less shocking to have shorter hair clumps than longer ones. =)

  • btwnstars
    btwnstars Member Posts: 81
    edited July 2021
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    Paki - def not shaving with a razor! I think a lot of us saying that are referring to clippers, like maybe our spouse’s use, to shave head to a low buzz cut. I will prob use a 2 just to leave enough fuzz, which will fall out.

    Monarch - I think you can take all the time you need to be comfortable with whatever way you choose!

    Part of me is just ready to get on with the bald thing already… I am def wishing these weeks away.

    LoJ - hope u do well with #3, is that over the hump for AC for you? (4 treatments?) Glad to hear you’ve been handling it ok. Gives me hope

  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Hello everyone! Had third infusion yesterday. I had hot flashes last night all night. Maybe no more cycles…. We will see. How is every body doing?

  • Maura1
    Maura1 Member Posts: 12
    edited July 2021
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    Hello! I am a little late joining, I started chemo July 2nd but I couldn’t find a July Chemo group so figured I was close enough to jump in here. Today is day 12 since my first TC infusion. When did hair loss start for you? From what I’ve read it seems to be around day 14 for most people? I’m trying to decide what to do with my hair, thinking about buzzing it short this weekend. I’d like to feel like I have some control over it instead of waiting for it to fall out, but I don’t know if I should wait.

  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Maura1,

    I am sorry you have to join us. But we will all love on you and help as much as possible!

    Well my hair didn’t start coming out until day 17 or 18. But it came out in clumps. I have yet to shave it. I am wearing a wig on the daily and I do still have some hair just not a lot. And I have bald spots. I’m sure I’m going to shave it at some point. I just have not gotten my nerve up yet. Everyone is different. I am not going to lie losing my hair was very emotional.

    Hugs sent your way! Hope you do well with your chemo.

  • SRL
    SRL Member Posts: 6
    edited July 2021
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    I cut mine in a short pixie cut. My oncology group recommended that rather than buzz cut because the weight actually helps it come out. Today I amhaving my daughter buzz what's left off, who knew hair hurts

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    Lover of Jesus, I had hot flashes during the first week of my first infusion. I’m due for my period any day now and will be curious to see if I get it.

    I had my hair buzzed. I think she did it too short. But I rub my head at night- after wearing a wig or a cap it feels good- and a lot of hair falls out. It’s just really short. I kinda wish it would all just fall out. Losing my hair seems harder than losing my breasts and I love my breasts. I don’t know why either cause this hair should grow back! I think cause I can’t hide that it’s gone. My 13 year old daughter told me my wig looks fake. It was expensive. Honestly I know what she means. It really hurt. I know she’s a kid. And she’s the type of kid who is not very socially adept. Anyhow. Having cancer while raising kids is so hard. Cancer affects everything. And I am still their Mom. Their needs are important too. It’s hard.


  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Monarch,

    I bought my wig at a wig shop and tried a ton on. Paid over $200 for mine. But it looks fairly good. You can order real hair ones online at wigdo.com

    They seem good. I ordered one of those too just to have. I have not gotten it yet. I will put a pic on here of the one i haveif they will allow.

    Mine is a Raquel Welch. They look really real! You can find that brand at most wig shops. Also if you can find an American Cancer Society place in your area they have ones there for free for cancer patients. You may want to try there. This is my Raquel Welch wig they are from $150 or so they are not terribly priced image

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    that does look good Lover if Jesus. Here’s mine image

  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Monarch,

    I think that looks good girl! I don’t think it looks fake at all!!!

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    thank you, lover of Jesus!

  • Carlsoda
    Carlsoda Member Posts: 120
    edited July 2021
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    Maura1 - so sorry you had to join us but we are a supportive group! I am on TC and hair really started to fall out on day 14. Funny thought I haven’t lost all of it but quite a lot! And..I think what is left is growing. Still have majority of eyebrows and eyelashes (touch wood!!) my wig cost about $450.00 but it has a nice lace front and looks real - no one has noticed yet! But I usually just wear hats and scarves - fast and comfy!

    Lover - love your wigs - looks great on you!!

    Monarch - sorry about your daughter. Just remember she’s 13 and likely didn’t mean it. She was probably already grumpy! Bad age!

    Tomorrow is my third infusion - just can’t wait to be done! I started Prilosec 2 days ago so really hoping no acid reflux this time! I had some nice weight gain the last few weeks so I wonder what they will say? Kinda hard not to when I am living off carbs. When this is all over I am going to struggle to get back to my normal eating - I will have to detox from carbs!!

    Hope everyone is doing okay - sending each one of you hugs!!

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    carlsoda- ugh with the weight gain. I’ve been steadily gaining weight since my surgery. I cringe everytime they weigh me at the oncologist. It feels like being pregnant all over again. Before cancer I tried to walk 10,000 steps 5 days a week and lifted weights or did body weight exercises two days a week. Since my surgery I haven’t been able to exercise like that. Not even close. And I’m doing a lot of comfort eating. Between losing my hair, breast reconstruction and gaining weight I’m struggling!!

    Can I say I’m really jealous of you ladies on your third cycles? I get my second treatment on Monday but am encouraged that I will be halfway through.


  • Dicon
    Dicon Member Posts: 32
    edited July 2021
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    My hair was already short so I just let it fall out gradually. I stand in the shower and let shampoo drizzle over my head, rinse, then conditioner, rinse and then clean out the drain! I don’t pull on it with a brush or a comb. The conditioner straightens out and the water flow clears loose hair.

    I bought surgeons caps in wild patterns. I ware those at home. When going out I wear a short wig and a hat or golf visor. You really can’t tell it’s fake with half of it covered.

    I’ve become a recluse, running out of excuses to not visit with friends. Third AC round is tomorrow and dreading it of course. I have had 3 good days this second round…I call them B+. 2 D days and several C+.

    We will get through it! I have planned a trip to Kauai March 2022, need something to look forward to

  • Maura1
    Maura1 Member Posts: 12
    edited July 2021
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    Thank you everyone for your responses and encouragement!

    Monarch and LoverofJusus, your wigs look great!!


  • Maura1
    Maura1 Member Posts: 12
    edited July 2021
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    Carlsoda, thank you for the reply and encouragement! I began losing hair yesterday and today (day 12-13 after my first infusion), mainly just shedding so far- when I run my hands through my hair, more hair on my clothes, and in my brush. I'm wondering if for anyone on TC they just experience hair thinning and not complete loss? My original plan was to cut it really short (pixie or buzz) this weekend, but part of me is holding on to the idea that maybe my hair will just thin. Probably just wishful thinking!

    I'm happy to hear you still have most of your eyelashes and eyebrows! That honestly scares me more than losing the hair on my head!

    Good luck with your 3rd infusion, I hope it goes smoothly!

  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Hi guys maybe this is not the place to post this but I'm struggling today. Not physically. Mentally.

    I amsuper sad today. Scared and just wanting so badly for this to be over. Wishing at times I had already had surgery. At the rate I'm going surgery will be around Thanksgiving which makes me not very thankful.

    I know I'm looking at radiation probably too so I'm looking at next year of this coming to an end of any kind as far as treatments and surgery goes. I know I'll have hormone blockers but that doesn't require a visit every week. I guess I'm having a pity party today I won't stay in it but could use some prayers and happy thoughts sent my way.

    Love you all.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    Maura,I buzzed mine on day 15. I had trouble NOT thinking about my hair. I’d run my hands through my hair and look at how much came out. Hair on my pillow. Hair in the car. Hair in the floor besides me. Buzzing it stopped that obsessive thinking. Mine started shedding day 12-13. I’m mostly glad I did it. But I do wonder if I could or should have waited. My hair is buzzed pretty close. And last night watching tv I was rubbing and pulling on the shirt pieces (not even 1/2 inch long). But the day I went to get my hair buzzed my hair looked flat and limp. So to me it was like why am I waiting? I’d rather be in control of this. I did feel better after it wa done. Like ripping the band aid. That’s not to day I don’t have a lot of emotions. It’s hard leaving the house in a wig or a cap for me. But I’m doing it and I hope it will get easier.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    lover of Jesus, I understand. It’s hard. Im thinking about when I’ll do my exchange surgery. And because I just got hired as a preschool teacher (I had been subbing previously) i want to do it during one of the breaks. Thanksgiving or Christmas. It’s all so much. I’m ready to be done. A dear friend of mine- her husband - just had a biopsy of his pancreas. His dad died of pancreatic cancer and he carries the brca gene. I hate cancer so much. It takes so much. I want to go back! Anyhow I’m rambling. Trying to give you support. Hugs!!

  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Monarch,

    Thank you so much. Sometimes it just helps knowing someone feels what you’re feeling. And even though I don’t want anyone feeling this, Knowing I’m not just being whiny sometimes just helps. I pray this becomes easier for the both of us.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    well I got my period right on time! I was hoping the chemo would give me a break from my periods. Kinda annoyed. And my scalp was bothering me yesterday so I rubbed coconut oil on it and that felt great. Then in the bath I was rubbing conditioner into my scalp. You should see the amount of hair (it’s buzzed so it’s like stubble ) that came out. I will truly be bald very soon I think

  • Jcatron243
    Jcatron243 Member Posts: 6
    edited July 2021
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    Hi all. I don’t post much, but I read often. I’m on day 17 (counting infusion day as day 1) of my first TC infusion. My hair started coming out on day 13, by day 14 is was coming out in clumps so I got a buzz cut from my husband. Last night was tough because when the fuzz gets disturbed my scalp hurts (please no rubbing the fuzz!). Yesterday I went out shopping with just the buzz, but I bought some super soft “Boundless Bandeaus” from Earthbound. I have been wearing one ever since. I also bought a cute hat, and some soft beanies.

    With round two coming up I am starting to make a list of what I want to make my life easier. To be honest I was on the go for the first week of my first infusion, so I’m not sure what I really want. I am thinking about a heated blanket. My body hurt so bad, heat and walking were the only things that relieved the pain a little bit. (I take Zyrtec regularly for seasonal allergies, I tried to switch to Claritin but it didn’t work.) I need to ask my MO for something for the pain, and/or something to help me sleep. I didn’t sleep more than two hours at a time for the first ten days. Water also tastes gross, and it gives me heartburn (I take Pepcid regularly). I am adding lemon juice to it, and that helps a bit. I bought some crystal light to see if that helps more. I started drinking seltzer water, and that helps with the heartburn.

    Here’s looking to round two..

  • kotchaj
    kotchaj Member Posts: 214
    edited July 2021
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    Thought I'd just share this little tidbit. I've had really bad bone pain the last two days. This morning as I was reaching into the cabinet for my Claritin, I saw the bottle that I've been using, turned it around and realized I'd picked up the Benadryl the last two days...seriously, it's PINK pills. The bottle is the same size as the Claritin, but that is about all they have in common. I don't know how I managed to do this, but I will say today I feel so much better and no bone pain today. UGHLoopy

    I was also having bad headaches after my first AC treatment. I went to see my Oncologist and found out that stacking my anti nausea meds caused the headache. So, another pill this next week to help with the headaches because my nausea was BAD. Still have my hair, but have an appointment this coming Thursday to buzz it all off.

    Round 2, halfway done with this as of Tuesday. I can do this. We can do this.

  • Carlsoda
    Carlsoda Member Posts: 120
    edited July 2021
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    Wow, so many posts. If I miss responding to anyone don’t take offense - I had round 3 yesterday and kinda out of it today!

    I do have a few tips I learned yesterday I want to share!

    MO said it’s ok to Prilosec twice a day for a few days if the acid reflux is badI started two days before chemo and today I will start with 2 a day.

    Claritin does work for bone pain - start on day 1 for 3 days. I also get really bad body pains/migraine and it’s ok to take 600mg Advil 3 times a day for 3’days. Sundays have been my worst day so I will start Advil tomorrow.

    She told me to also try to eat lower carb to help with weight gain. Didn’t work today as I needed to stay awake for work issues, but tomorrow is another day 😂

    And the biggest tip for those of us without a port, last two infusions my favorite nurse put the iv above my wrist in my arm. NO PAIN, NO BRUISING!!


    sending HUGS lover - one day at a time, one week at a time. Put your trust in God - he is looking after you!

    Monarch - glad the coconut oil helps. It takes that weird feeling away!!

    Jcatron: coconut oil really helps with the hair - I guess it softens and moisturize your scalp. I put some on after every shower. I also switched to all natural shampoo and conditioner and follow up with the coconut oil. Sleeping in a hat helps too. My husband laughed at me the other day because I pulled the hat down to block the light in the morning! Hey a girl has too sleep right!! Also Prilosec will help with the heart burn. I complained about the worst heart burn ever and sure enough acid reflux and most people on TC get it!

    Kotch - great job reaching out to your oncologist! I am more of a dr google gal. I would rather research first then make a phone call LOL!! And you are right - we will get though this!’

    Have a good weekend everyone - hugs!!!

  • Dicon
    Dicon Member Posts: 32
    edited July 2021
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    Loverofjesus, yes hugs and prayers to you for a better day. It is a day by day thing. I was severely depressed the first week after infusion. It’s not something we feel comfortable sharing with our loved ones as we don’t want to burden them so we suffer in silence. That’s why there is a forum you can unload on….well done!

  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Dicon,

    Thank you so much for the words of encouragement. In fact thank you all. I went to my youngest daughter’s Dance camp (she is on the high school dance team) awards day today. It was amazing. So proud of my girl. I intend to be around to watch her dance all four years of high school and watch her attend college and get married and have children. I’m counting on beating this! I’m counting on Jesus to have my healing on this side of Heaven. I want to live to encourage others through this and let them know they will be okay too. We are all going to be okay! We are all going to walk this out and come out in victory! Cancer does NOT number our days. Jesus does!

    Thank you all for letting me vent! I hate dumping on my family all the time. I don’t want to dump on you guys either. But we have each other. And that to me is a big deal!!!

    Hugs to all and hope you all have a great weekend and week ahead.

  • btwnstars
    btwnstars Member Posts: 81
    edited July 2021
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    Catching up here… finished AC 2 Thursday. I feel like I’ve had a harder time this round but my SO thinks I’ve been better?! I think it’s hard to remember the exact days of feeling blah. I def am just like ready to get thru with this tho… dreading 6 more treatments… the mental slog is tough LoJ! Hang in there.

    I think the wigs look great ladies!

    I noticed hair coming out yesterday and today, so basically day 17. I still have stuff on my head for now but I am thinking it will get buzzed in the next day or so. It’s a weird feeling. I still have to get back to wig store to pick up.

    I also am doing PT for arm cording after surgery. Luckily right now the OT doesn’t think it’s lymphedema. So hoping the pt will help and just b good for post surgery movement.

    My appetite is all over place, I try not to worry about it and just eat what I can when I want. It seems to balance itself out in my off week. Altho getting back to feeling good in time for a new treatment sucks!

    Hoping you are all hanging in there. I feel like everyone will feel better when there are fewer treatments in sight, it won’t b too long now.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    ok ladies I had my second infusion yesterday. Everything went fine. But yesterday was day 4 of my period. Typically I’d be spotting on day 4. Well I’d call it medium flow. And today is day 5. Still not quitting. This sucks. My oncologist was disappointed to hear I got my period and hopes chemo puts me in menapause. He said if not he’ll have to do that. My cancer was very high in estrogen. Anyone else have their periods? Were they different

  • moderators
    moderators Posts: 8,287
    edited July 2021
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    Chiming in, in case anyone is interested in joining us today:

    TODAY: Zoom virtual meet-up for people with a diagnosis of metastatic breast cancer.

    Mondays 2:00-3:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting HERE.

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