Starting chemo February 2020
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Hair regrowth questions...
My underarm hair does not seem to be growing. I have had to shave there since ending chemo, but hardly at all.
I feel like I'm losing some hair again in the typical "receding hairline" spots. It's definitely thinner than the rest of my hair. I think I had the same thing happen when I was pregnant (and it got worse with each successive kid). Maybe it's hormone-related (menopause). Anyone else have this?
Last HP infusion tomorrow. Coming up on my diagnosis anniversary (Valentine's Day). Finding I get teared up easy when thinking about it. Planning on going ax throwing with my husband as a combo date/diagnosis anger release activity.
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just saw this on a Facebook Group I belong to.
https://www.fox13now.com/news/coronavirus/local-co...
"They say women who recently received a COVID-19 vaccine may have to postpone their yearly mammogram.
"When one receives a vaccination there is an inflammatory response in the arm," said Dr. Brett Parkinson, medical director of Intermountain Healthcare's Breast Care Center.
Whenever we see these on a normal screening mammogram we call those patients back because it can either mean metastatic breast cancer which travels to the lymph nodes or lymphoma or leukemia."
I didnt see how long you have to postpone. Maybe a few months?
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micd- I don’t have much underarm hair on my radiated side, but my other side is back to normal. The hair growth area I’m having struggles with are my eye lashes. I just can’t seem to kick the occasional styes despite not wearing any makeup for months. Congrats on the last HP infusion! This week would typically be when I’d get my next infusion and for the first time in a year I won’t be going in for one. So weird. I love the ax throwing date. I feel you on the diagnosis emotions...it’s hard for me to think back on that time and how terrible it was and what I (and my family) have been through.
Morrigan- interesting. I haven’t read anything like that before. Curious how long they suggest you post pone. I won’t ever get a mammogram again since I have implants. Only MRIs for implant integrity but that’s a good 2 years out still. My arm I got my covid vaccine (moderna) in felt totally fine a few days later. My next one is 3/1 so I’ll be curious how I am after that since I have heard that the second one can have more side effects (fever, soreness, tired/achy). I’ll keep you all posted!
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Mom got her first shot on Tuesday (Moderna). I get my first shot on Friday (Modern).
Mom said only issue is a sore arm. I do hear that the 2nd shot can knock you on your ass for 1-2 days. I'm curious to see how that compares to Chemo.
I'm at the point where I measure everything by Chemo 😂
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So much for early menopause. Got my period. I guess it's a sign that my body is resilient. Still... like not having to shave... it was a SE that was nice while it lasted.
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Wow, weird timing. I just posted in the Triple+ forum that my Estrogen was checked and I am in full blown menopause. I have no idea if this will last once I get off of Kadcyla. My MO said that given my age 45 it's probable that it won't come back. He did say that they sometimes see people like me in menopause for years and then they hit 49-50 and the body wakes up for a year and then goes back into menopause.
At this point I hope it never comes back. Yes, there will be issues with my bones/calcium due to early menopause but, I feel fine so let's not rock the boat 😂
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morrigan 25. I hear you re: comparing everything to chemo - and I am still doing it 1 year out!
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Micd- I agree, while I don’t like the possible long term SE’s of early menopause I do like not having to deal with a period anymore. I’ll be curious when I’m off OS/AI in 9.5 years when I’m 45 if I’ll stay in menopause.
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How is everyone doing? My hair is absolutely UNRULY. I don’t even know what to do with it...a winter hat is too warm most days but it’s so all over the place even when I try to “style” it. Maybe I should give it a trim..:
I had my last HP infusion about 5 weeks ago. I can’t say I notice any difference in my body at all. I still have OS/AI but don’t have many side effects from those that I can tell...other than weight gain (questionable if it’s from that or just my habits) and occasional hot flashes and joint pains. I LOVE my peloton and while I’m certainly not a pro and exercising for hours, it feels good to get moving and stronger little by little.
I have my second Moderna vaccine on Monday. I’ll report back on my side effects!
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micdpowers - my underarm hair is growing in my non radiated side. On the radiated side I have a little area where it grows, and have to be really careful because I have no lymph nodes so I can’t cut myself when I shave. My hair seems slower growing everywhere. Ugh about your period. No sign of mine yet, I’m curious I have had days where I absolutely feel like it’s coming, like pms but nothing.
Mmorigan - yes on the vaccine! That’s great. You and your mom I hope it’s easy for you
ajminn - I was just talking to my onc about weight gain. She said it’s the lack of estrogen, it slows down your metabolism, so you can’t eat the same way. I’ve seen you on the peloton, I gotta high five you next time. I’m glad you love it, me too. I might not be losing weight, but I feel so much better.
My hair is crazy too. I ordered some “boho buffs” from the website Natural Life and wear them as headbands. But if I wear a winter hat, I forget about it, I look insane. I’m wondering when I should go for a shaping trim
I’m at Kadcyla #8 infusion today. Still handling it ok I have some lymphedema in my breast, which is annoying, and still trouble with my shoulder, but that’s ok.
No vaccine for me yet. In IL, I become eligible tomorrow, but my hospital hardly has any doses and they are holding them for only 65 and up still. Same with my county health department. So, I guess I’ll be searching pharmacies for an appointment. We are having a really slow roll out, it’s frustrating. I guess people are traveling downstate to find them. It’s crazy.
I can’t wait to join you all in adjusting to no more treatments. I’m doing well, so my doctor thinks I’ll make it all the way to Kadcyla#14, at the end of June. It’s a long way.
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i got for Kadcyla 12 tomorrow. I handle it well but, I am looking forward to not being in active treatment. Seems like I've been at this forever.
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Fab4mom- I agree, it feels good to get moving again! Maybe some weight loss will come along eventually for me.
Morrigan- congrats on another round down! Getting closer to the end of active treatment!
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I'm three weeks out from my last H&P now. Hoping to notice a decrease in joint pain, diarrhea, and joint pain in the next month. Still need to decide whether to go on Nerlynx. I think I'll take a few months to think about it.
Fab4Mom - I got my first dose at Walgreen's today in Kane county. It was not difficult to get an appointment here - if you haven't gotten yours yet, try going online at 6am/6:30am for appointments. . Be logged into your account, don't select the first time available, and be ready to click fast - but in the early morning there seem to be plenty not yet taken.
I love my buff headthing too! I need to get more. Do you just wear it like a headband or have you tried the scarf look - pulled back to cover more hair?
Today I decided to just muss it up after my shower instead of trying to comb it down - and I have a curly chia head. I have my first haircut scheduled in two weeks and its hard deciding what style to aim for that can grow out. I feel like the short curly grey halo is all around is um... for women older than myself.... but I'm reluctant to cut any of it much. The back for sure needs to be trimmed up.
I have bald spots in my eyebrows....
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I'm almost done with treatment. 2 more Kadcyla left.
I'm thinking of gifts for the staff. I'm leaning towards making cupcakes.
Did you guys give gifts?
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micd- 1) you look great! I should consider a hair cut, but so far I’ve just let mine grow wild. I still wear hats (MN) but that’s ending soon so I need to figure something out. 2) my MO said since I had perjeta on top of Herceptin, he didn’t recommend nerlynx. Data shows a statistical difference in favor of HP vs H plus nerlynx I guess. Take time to think about it and discuss with your MO!
I had my second moderna (covid) shot on Monday. Fortunately I had no side effects beyond a sore arm at the injection site. No worse than the flu shot. Or maybe my pain tolerance is crazy now post treatment...
Morrigan- I gave my team a basket of fruit and wrapped treats. It’s hard to know in these covid times what they can have, so I went with things that could be washed/peeled and wrapped items (candy bars).
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micdpowers - I actually got my first shot too, I was able to get at Walgreens early morning. It’s a good feeling having one down. It sort of hit me how much extra stress we have had to endure going through all this during Covid. And I’m glad to hopefully be letting that part of the stress go. My hair looks about the same. I want to highlight it soon too, I’ve always been blonde and it came back it’s normal color, but it needs a little brightening. My doc is not in favor of Nerlynx for me. She said because I had such aggressive treatment with Kadcyla, and no data to show it helps. I keep seeing the advertisements for it on Facebook now, somehow they tracked me down. It shows a clipboard with all the treatments and Nerlynx as the last step. It’s a really effective ad to make me feel like I am supposed to take it. But I’m going to work with my oncologist on it.
Mmorigan - so close to done with Kadcyla, I’m excited for you. Even though it hasn’t been too bad for you or me, it’s just the whole process that is exhausting.
Ajminn - yay for second shots. I hope your side effects start to fade away. I’ve been doing acupuncture the last month and I think it’s helping with joint pain, hot flashes and neuropathy. It’s hard to tell, but overall I have felt more energized and less hot flashes, so I feel like it must be the acupuncture.
We went a little crazy yesterday and adopted a new dog. We have one amazing dog, Buster, that we adopted in the summer of 2019. He’s been such great support and distraction through cancer and Covid, and we thought he could use a friend. One came up on the rescue website Tuesday and it went fast, we met him and took him home last night! So four kids, two dogs and two fish. Welcome to my circus!!! Good news is that both dogs slept in their crates no crying from 10am -7am, so hopefully this will go well!!
And here’s my post peloton ride selfie. Big hair don’t care. I also am a tomato thanks to a particularly challenging ride. I feel like the Kadcyla and tamoxifen are keeping my growth on the slow side
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Fab4mom- 4 kids and 2 dogs! You are braver than I. My husband talks about getting a second dog, but I feel our hands are full with our 3 kids and 1 dog haha. Maybe someday!
It’s spring break for me this week and the weather (with the exception of today) has been beautiful in MN. I’m so happy to see the snow melt even though I know we will get another round of snow I’m sure. My energy feels way up and I think the sunshine and warmth has a lot to do with it!
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I’ve unlocked pigtail status! Bonus pic with me wearing some makeup- a rarity these days! Clearly I have a face side preference in my pics...haha not sure why
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Love it! Hair is really growing in.0
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ajminn - ponytail status is awesome! I don't think I'm there yet, I blame the damn Kadcyla, I think it's making my growth slow. But it's definitely growing. We had some good weather for awhile, and it made such a huge difference in my mood and energy. Plus the extra sunshine and later sunset is helping. Of course yesterday we got snow, but it wasn't too bad.
I go for Kadcyla #9 tomorrow, and infusion #19 overall. I have a friend in my neighborhood who also has triple positive, diagnosed in March 2020. She had residual and started Kadcyla after me, but is almost done, her doctor is just taking her to the one year total, and I'm jealous. I feel like I should push through and do all 14 since my doctor is encouraging it, but I'm so tired of being on this stuff. I want to move on and get my reconstruction done and on with life. But I would never turn down the medicine that has been show effective at keeping the cancer away. I just hope my body comes out the other side of all this chemo without too much collateral damage.
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Yay for hair gains. My hair is extremely curly but it's growing even though it seems like at a snails pace. I hope everyone is doing okay. I'm waiting around to get my first mammogram after radiation. I won't have that until May. I think once that comes back okay I might be able to relax a little bit....
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Dyson- I was kinda hoping for curls but I’ve got my stick straight hair back! I won’t get mammograms anymore (thanks cancer for giving me my first and last one) but I’ll be due for an MRI to check my implants next year. Hope your mammogram goes well when it comes and jr provides some relief!
How is everyone else doing? I had to go in to get a wrist X-ray after a workplace injury and 1) holy PTSD with imaging. I was a mess thinking crazy things like, “the cancer is in my hand!!” 2) I think my medical humor was too dark for the orthopediccrew...lol
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Doing pretty well, almost at the end of treatment. I have 1 more Kadcyla then I'm done with everything except Tamoxifen/AI.
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My hair is curlier than usual and I hope it stays that way lol
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wow, your hair looks great!
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Scattered- I LOVE the curls! Looks beautiful!
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Thanks ladies.
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Love them!
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14 months later, I can finally say I'm done with treatment. Yay! Had my final Kadcyla this morning.
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woohoo. No meds or anything? Congrats.
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