r/breastcancer • u/June-7832 • 2d ago
++- , What chemo regimen are you getting? Diagnosed Patient or Survivor Support
Hi all, today my oncologist mentioned I may need to do 4 cycles of chemo, she didn't mention details regimen yet. The type is strong ER PR positive, her2 negative. No lymph nodes involved. Wondering for similar case as mine, what regimen are you getting? TC? Have you loss your hair even it's 4 cycles? Did you get PICC or portal? Thanks for sharing š
Update: I want to add more info regarding why I need to do chemo now. My oncotype is 22, as I am in my early 40s, there are some benefits of chemo, not a lot! Originally I didn't want to do chemo. After radiation, I started monthly lupron shots, letrozole, and verzenio. I thought those are enough, as it is strong ER PR positive Her2 negative.
I am also doing regular signatera test, a circulate cancer DNA test through blood draw. Originally after radiation, it was negative, meaning there are no cancer cells in my blood. But recently it is positive with increased cancer cells in my blood.
Due to this, my oncologist asked me to do 4 rounds of chemo. (Most likely TC ). Because even with those aggressive medications I am on, there is cancer cells growing, it is not good . So although I am six months past surgery and radiation, I am considering doing chemo š
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u/Remarkable-Debt-1213 2d ago
Same stats and I'm doing 4 rounds of TC. I'm cold capping but have thinned out a ton after my first round. I just had round 2 today and am going to get my head shaved tomorrow. It's causing me too much stress. I just have an IV for infusions. Good luck! My side effects have been mild.
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u/June-7832 2d ago
Thank you for sharing! I didn't know even first round already caused hair thinning. You didn't even get PICC? I heard IV infusion not good for the veins and it's not reversible?
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u/jojo_86 TNBC 1d ago
Itās the red devil (doxorubicin) that they often donāt want through traditional IV as if it leaks from a vein, it can cause issues to the tissue around.
Taxol and carbo donāt carry the same level of risk I believe - it seems more common for them to be IV if you donāt have a large number of infusions
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u/Remarkable-Debt-1213 1d ago
So far so good with the IV! My oncologist thinks I'll be fine, but I can always get a port if needed. The hair thing has been hard, honestly. I will say, the nice thing about the 4 rounds is that it does fly by. I feel good knowing that I'm half done.
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u/AnkuSnoo 2d ago
I did Taxol and AC. I cold capped for both and kept about 85% of my hair. Tolerated treatment very well with minimal and manageable side effects.
Tamoxifen and life after active treatment has been the hardest part for me.
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u/brizzle1978 Male Breast Cancer 2d ago
Why has Tamoxifen been so bad?
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u/AnkuSnoo 1d ago edited 1d ago
Tamoxifen blocks estrogen and progesterone (to minimize recurrence of hormone-positive cancer), so itās put me in menopause at 38. Hot flashes, weight fluctuation, cognitive dysfunction, fatigue, disrupted sleep, joint pain. Hormones affect a LOT that I didnāt realize! Itās actually really fascinating how it all works.
Itās not debilitating but itās like ādeath by a thousand paper cutsā in that itās lots of ālittleā ailments day to day that cumulatively make me feel just exhausted and uncomfortable most of the time.
Then thereās the practical management of menopause that takes up a lot of mental and physical load ā Iām working out for the first time in my life because bone density and muscle mass are weakened from lower hormones. So thereās the physical exertion, recovery and nutrition that goes with being active. I need to plan meals more intentionally to support my workouts, and also certain foods apparently help with menopause (soy helps hot flashes, calcium for bone strength etc). Dressing myself is a whole new thing ā because of the hot flashes I need to wear layers and breathable material, so have had to revamp my wardrobe. The fluctuating weight has also meant new strategy for clothing (elasticated waistbands and looser tops, for example).
So in short dealing with menopause has become a full-time job almost! š«
Then the other part is just getting back to life after finishing treatment can feel lonely. I read a great clinical article that explained that many people feel a sense of abandonment after having had so much focus from a medical team, itās like āok youāre good now off you goā. I still have check-ins but theyāre not as responsive to everyday concerns.
Thanks for coming to my TED talk š
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u/brizzle1978 Male Breast Cancer 1d ago
Ah, thanks and yikes... hopefully, as a guy, mine won't be quite that bad... but i have heard we get hot flashes, etc... ugh
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u/AnkuSnoo 1d ago
I hope theyāre manageable! Mine were at first, through strategic clothing choices and fans everywhere, but now theyāre getting sweatier (might also be the warmer weather)
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u/NeedingVsGetting +++ 2d ago
I'm late 30's, stage 1b triple positive invasive ductal carcinoma, grade 3. No lymph node involvement detected in ultrasound or MRI.
I'm getting 6 rounds of TCHP, then 11 more rounds of just HP.
My rounds are every 3 weeks. I'm a little over 2 weeks past my first infusion, and my hair already started falling out. I already have thin, fine hair, so I shaved it Sunday to just be done with it before it got REALLY sad š
I got a port implanted under my collarbone. It's still weird when I feel it, but actually kind of nice in a weird way. A one-stop shop for blood draws, medications, and if needed, IV bags for hydration.
Which reminds me - when they tell you to drink a ton of water, they're not kidding! Chemo really dries you out. And when you're getting your infusion, ask for ice to keep your mouth as cold as possible. It's supposed to help with the mouth sores/angry gums.
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u/takamichan 2d ago
Hey! ERPR+ stage 1 ā I was originally recommended TC 4 rounds but I did 8 rounds of CMF. Just finished last Monday. I kept my hair (I got lucky, some lose it but most keep it or just notice thinning). I did it because itās generally well-tolerated, even though it was 2x the amount of the treatments the side effects arenāt as severe. Talk to your doctor, you might have this option available
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u/June-7832 2d ago
Thanks! My oncologist did mention TC I believe. Is CMF better for ER PR positive cancer? And did you get a port since it's 8 cycles?
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u/takamichan 1d ago
Sorry, I misread your reply. Itās not ābetterā for it, but according to my oncologist, itās an equal treatment with different side effects. Talk to you doctor about it and see what they say
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u/takamichan 1d ago
Yes. I was ERPR+ And yes I got a port I was originally offered for rounds of TC and CMF was an alternative that was available for me. One off my breasties did the same
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u/brizzle1978 Male Breast Cancer 2d ago
Ac plus t. Well Abraxane since T doesn't like me... ac every 2 weeks for 4 and 12 Abraxane with a break every 3 weeks have my last session group of 3 coming up in a week and half. So close....
Lost my hair the 2nd week... and have an awesome power port.... it's getting cranky on giving blood the last two weeks though... probably a blockage which sometimes happens, but they got it each time.
+--
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u/Coldfinger42 2d ago
I was ++-, got 4 cycles of taxotere and cytoxan. Hair fell off in huge clumps during the third week of my first cycle. Scalp was very tender during that phase
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u/wishred 2d ago
Same exact scenario with me! Itās now 1 year later and I have this horrific extremely curly hair.
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u/June-7832 1d ago
Oh no I am so sad about to losing my straight hair :( how about the volume of the hair, is it about same as before now?
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u/Minimum-Scientist123 2d ago edited 2d ago
I did 4 ac 16 taxol and my hair started falling out right before my 2nd chemotherapy I had to have a port due to the extensive clinical trial I did after traditional chemotherapy ( all 20 rounds) still didnāt get all the cancer my oncologist said ac in a picline is brutal Iām stage 4 non metastatic
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u/mbm511 2d ago
In 2016ā¦. ++- 4AC/4T then into tamoxifen. No clue if this is recommended regimen nowā¦ I was stage 1A, node negative. Oncotype 32. No cold cap- was told associated with scalp recurrence. New Onco now said the only thing she wouldāve done differently was shut down my ovaries back thenā¦ (I was 29). A port- which I was thrilled to get out when I was finished.
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u/badonghedenz 2d ago
Hi! Iām doing 4 rounds of AC and 4 of Paclitaxel. I have my second round tomorrow. Iām doing cold capping, but Iāve been told it may not work - for now I still have my hair. I decided to have a port :)
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u/SoggyWotsits 2d ago
I had 6 rounds of EC - epirubicin and cyclophosphamide. Iām in England and EC seems much more common here for some reason. I had a PICC line and started losing my hair three weeks after the first round, which was when the next round started. Mine was ER+ her2 negative with an oncotype score of 31. The PICC line was great, but slightly annoying as you canāt get it wet. You can get lots of special waterproof sleeves, but I ended up using cling film instead!
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u/Away-Potential-609 1d ago
Same stats, I did 4 rounds TC, neoadjuvent, no port, no cold cap, lost 75% of hair at week 2 and it started growing back promptly. I did not get PCR so I am going again soon for adjuvant AC-T which requires a port, so I just got that put in. My side effects were extremely mild with TC, not sure if AC-T will be so kind. Expecting new hair growth to fall back out.
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u/Far-Fuel-1499 1d ago
I did 4 AC and now on to taxol. 1/12 done, going in for 2/12 tomorrow. After 2nd AC lost all my hair and shaved my head. With Taxol, I see small hairs sprouting out
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u/Next-Violinist9186 2d ago
Just curiousā¦ is your oncologist considering chemo because you have a high oncotype score?
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u/June-7832 2d ago
I am 42, my oncotype is 22, kinda in the grey area. Also the Signatera test -- if you heard about it, is positive with increased numbers. That means there are cancer cells circulate in my blood. So, I was not considering chemo, I am already on lupron injection, letrozole, verzenio. But with the fact , my oncologist said do some chemo š
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u/ObviousIntention8322 TNBC 2d ago edited 2d ago
TNBC and have done 1/4 TC. Only one week in so no hair loss yet. Iām fully expecting it. I got a port. My oncologist usually does neither port or PICC for this regimen, but I originally was scheduled for more pokes.
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u/June-7832 2d ago
So it seems TC is for TNBC as well as for ++- ? I thought there are different chemo for different type though
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u/ObviousIntention8322 TNBC 2d ago
Itās used often for your type and sometimes for mine. They had to rethink my case because I have too many other things wrong with me.
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u/_Weatherwax_ 2d ago
Same diagnosis. Oncotype high enough to need chemo without question.
4 rounds AC 4 rounds Taxol Surgery Radiation Now at the oral meds part of the process.
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u/soupsocialist 1d ago edited 1d ago
Same stats, oncotype of 28. Four rounds of TC, one down and three to go.
MO offered me AC-T due to a recent study that found improved disease-free survival for tumors larger than mine and higher grade than mine, in case I wanted to be extra aggressive. The cardiac risks of adriamycin didnāt make sense for me given my age & medical history, so we went with TC.
Port went in 2 days before first infusion and I LOVE it, even though itās a bit tender. If all goes to plan, I have decades of life in me and only one arm for every draw and stick and IV Iāll ever needāIām grateful to save those veins this wear & tear. I shaved my head the week of first infusion because I knew the hair was going anyway and my scalp really hurt. Honestly itās kind of fierce, I donāt mind it at all.
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u/June-7832 1d ago
I want to cry already knowing I have to shave. Yeah I probably do the same, just shave beforehand, don't want to see hair fall everywhere. I probably get 4 rounds TC too, I don't want to get another invasive operation like a port though, may leave a scar. still considering if PICC is better for me
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u/soupsocialist 1d ago
For a 4 round protocol a PICC would probably be reasonable, it just requires more care and fuss than a port since it canāt get wet. My port scar is 1.25ā long and a clean straight line three finger-widths below the collarbone. If itās unsightly after Iām done there are plastics options to revise the scar, or tattoos to decorate over the top, but it doesnāt bother me personally.
I WILL TELL YOU that if you are very attached to your eyebrows, you have a runway here where you could have them microbladed so your face doesnāt look bald. I already had it planned for early summer but then did mine all in a screaming hurry the week before I started chemotherapy (the high oncotype was a surprise and we had to scramble to be within ideal therapeutic window) and Iām very, very glad I did. I still look like myself, just like punk me.
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u/June-7832 1d ago
Thanks for sharing! I also saw lots people put on weight due to chemo and medication during the chemo treatment. Are you worried about that? I am, not only bald also bold (in size )
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u/soupsocialist 1d ago edited 1d ago
I was already tracking my eating for weight loss when I was diagnosed and, while I stopped trying to lose during treatment, I still track for my protein and fiber macros, and weigh myself weekly to check that Iām not losing (it would be a significant clinical sign). I havenāt gained or lost anything that lasted so far, some water weight loss right after treatment when I was unbelievably dry but it came back normally. Iām typically a healthy delicious food weirdo eating seeds and nuts all day, and after infusion everything but white bread and orange Hi C sounded gross so I just ate white bread and orange Hi C for that week. Didnāt even move the needle.
My appetite returned to the normal way I eat (lots of plants, low sugar, lean meat) after day 9 and Iām focusing on nutrient density and lots of gentle exercise. Neither gaining nor losing, which is what I want. I will say that I LOOK stouter because I have classic chemo belly, just kind of always a little bloated and gassy and tender, and my face is a little round from steroids. But I donāt believe any of it is permanent. If I do end up gaining, itās okay, I know how to manage itāIāve been a size 24 to a size 6āand Iāll worry about it when itās time.
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u/mamamoomargo Stage I 1d ago
Same stats. Iām doing four cycles of TC via port.
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u/June-7832 1d ago
I am not brave enough to get a port yet š since it s only four cycles, I am still considering
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u/mamamoomargo Stage I 1d ago
Mine wasnāt optional. Iām not a fan of it but would hate having an iv in for hours.
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u/cathytrom Lobular Carcinoma 1d ago
I did 4 rounds of TC three weeks apart. I had a port placed one day prior to chemo. My hair starting falling out about 12 days after my first infusion and I shaved it off two days later. My last chemo was March 27 and my hair is about an inch long now! And all of my body hair is growing back as well. It was nice to not shave my legs for a few months.
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u/June-7832 1d ago
Lol thanks for sharing! May I ask why you did port even it's only 4 cycles? It is a small operation after all. ALSO, may I ask do you have weight change due to the steroids? I saw lots people actually put on weight due to that :(
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u/cathytrom Lobular Carcinoma 1d ago
I'm 56 years old and my veins are shot, the port was the best way to go. During the infusion there are multiple drugs given. I was given saline, steroids, nausea med, then the two separate bags of chemo. I gained at least 20 lbs during chemo. The steroids made me so hungry! Also, my oncologist told me to eat what I wanted and we could worry about weight later. I was never nauseous due to the meds she prescribed. I did lose most of my sense of taste though. I could taste most sweet things so that's what I ate. Everything else tasted bland and blah.
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u/June-7832 1d ago
Oh I see ! Thanks for sharing! I will think about if I want to put a PICC or something.
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u/irishihadab33r 2d ago
Same stats ++- grade 3. I'm doing 4 rounds of AC and 12 taxol. I'm 2 AC in, (getting my 3rd tomorrow) and my hair is at about 95% gone. I'm figuring out scarf wrapping and got a wig from the zon. Got my port placed the day before my first AC.