ER-, PR-, Her2+ Roll call
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Ah St. Martin - such good memories.
Yes, both my retired and new oncologists said the test is not very accurate with lots of room for error. So if the number were going to worry me, he wasn't going to order it at all. The new oncologist is a female and more receptive to my just tracking the numbers without going into a panic & then asking questions if I'm confused. Of course I expect it also depends if your insurance is going to pay for it.
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@minustwo I think this issue with facial hair is a bit different from what you're thinking… I’ve been left with a general fuzz, very fine, almost like the hair babies are born with, you know? I mentioned this to two young women who had breast cancer (under 40), and they removed those hairs once and they didn’t come back. One of them did it about five months ago. So I have hope! 😅
@grammie2 tumor markers depend on the person. Both 15-3 and 27-29 are for breast cancer, but 15-3 is much more studied, so it’s easier to use that one. They’re mainly useful for monitoring treatment response and detecting recurrence, not for diagnosis, because in some people they don’t show any changes. In my case, they measured both markers initially, and 15-3 was the one that showed more alteration, so that’s the one they’ve used in all the following tests. Always. In every blood test I’ve had, this tumor marker has been included, and the first thing the doctor says when I walk into the room is, “your tumor marker is really low” (and may it stay that way🙏). Of course, it doesn’t mean that a recurrence can’t happen without the marker changing, but it’s another tool that can raise a red flag if something starts to shift.
This year I'm not allowed to be in the sun (and I live 5 minutes from the beach so it’s going to feel really strange not even setting foot there) but as soon as I can, I also want to enjoy it. A beach holiday must have been wonderful 🥰
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Hi, all. What a quiet week it's been on here! St Martin sounds wonderful! I can't wait until I can park my booty on a beach somewhere.
I had my weekly check in with my radiology oncologist today. My skin is ridiculously red, but not painful at all. He said I am more red than most people at this point, but as long as I don't have any skin breakdown issues he's not concerned. The usual lotions/creams I've been told to use only make me redder. The best thing that works for me is plain Aloe Gel and raw shea butter. He said to put the Aloe in the fridge and that should help cool me down when applied. It's crazy how red I am right after treatment, but I put on Aloe immediately after and the bright red is gone by the time I get home. Still walking every day after treatment, weather permitting. I also found out today, that I will continue radiation in the current area (entire right breast, under right arm, right side of neck, and back right shoulder) through April 22nd. Then, I'll have another simulation on the 23rd, and my last 5 treatments will be exactly where my tumor was locatelocated. SO close to being done with this phase.
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@beekaycro24 way to go on being close to done with radiation! And you go girl with being able to keep up with your walking!! I got so tired during radiation and I only had 16 total! About half way I was just good to go to work and radiation. The rest was doing a quick dinner and bed! I wish I had done better at exercise during the whole mess. I feel soooo out of shape!
Agree on the sun and beach! Counting down the days until my USVI trip. Nervous about being in the sun but taking a load of reef safe sunscreen. Just hope it works for preventing sunburns LOL. @catarina_fmis your sun restriction cancer drug related? I worry about this with Phesgo. I had hoped to have my last Phesgo before the trip but will have one more. I had some stomach issues about day 5 after the last one, not sure if it was drug or germ related. I will be flying day 5 after the next one so I have my Imodium ready!
Tomorrow is Friday yall!!
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@beekaycro24 I'm really glad you're keeping up with your walks! They actually say it helps with fatigue, so try to keep going, it's only good for you! My skin also used to get really red, but for me, not even the cream helped. The aloe vera idea sounds great! The important thing, as you said, is to avoid the skin peeling. You've already done more than half, it'll be over in no time, stay strong! 💪
@grammie2 I think my sun restrictions have to do with the radiation and the fact that I had very aggressive chemo (I think it’s related to the red chemo), not with Herceptin. My oncologist doesn’t recommend direct sun exposure until one year after chemotherapy. My radiation doctor said I could be in the sun, but like a baby: sunscreen 50 and only go to the beach early in the morning or late in the afternoon. I’ll probably still go since it’s right next to my house, but I’ll stay under the umbrella. You’re doing great by going on vacation! Enjoy! If you notice your skin getting more sensitive, just protect yourself more 😉
Have a nice weekend girls!🌼
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Hi lovely ladies. How are you all doing?!
I'm OK, have two rounds of radio left and then just have 10 phesgo left. Radio has been alright - no skin changes as such, just fatigue mainly.
One question I do have for those of you who were taking Zoladex during chemo for ovary preservation. My periods haven't returned yet, but I have been getting premenstrual-type cramps on and off for the last couple of weeks. What did you all experience/what can I expect?
Going to get a pap smear and have a gynae check me out down there as it's time for me to do all of that anyway.
Have a super day lovelies x
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@jessybessy I didn’t take Zoladex. in my case, the doctors wanted to start treatment quickly because I already had affected lymph nodes and the tumor was huge, and I’m currently in induced menopause. I’ve been having hot flashes (though fewer than before), and my oncologist said that my period could return from 6 months after finishing chemo and might take more than a year to come back. There’s still a chance it won’t return, because I also had AC chemo, but she thinks it will. I haven’t had any cramps yet. A friend of mine who finished chemo on the same day as I did and took Zoladex also complained about cramps 2 or 3 months ago, but her period hasn’t returned yet. So I don’t know… The truth is it could come back at any moment, but cramps don’t necessarily mean your period is about to come back. I hope everything regulates quickly for us! 🙏 I’m also thinking of going to my gynecologist soon.
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I've been on this site since 2015 and was recently diagnosed with stage 4, hormone negative HER2+ metastatic breast cancer. I have 2 tumors in my left lung and 2 tumors on my adrenal gland.
Because I have other comorbidities, my oncologist wants to start me on low dose THP which I welcome as it'll lower the toxicity and minimize the side effects but I also fear that it may not be strong enough to completely knock out the tumors.
Has anyone here had success with low dose THP?
I was cancer free for 10 years but had a high probability for recurrence based on my oncotype dx score.
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@chocomousse sorry to hear of your recent diagnosis. I hope others with a similar experience will chime in! But I will say that I know HP (Phesgo) has had wonderful results in folks with HER2+ mets. My surgeon told me at diagnosis that she has had patients with mets on HP for 10+ years who are doing well. Curious what your treatment plan was 10 years ago. Was it different than the current for HER2+? TCHP x 6. I have read that the TCHP treatment has been used in low dose form and had good results.
Sorry you are back, but glad you are here and hope we can be of some type of support for you.
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"I have read that the TCHP treatment has been used in low dose form and had good results." Thank you grammie2.
I don't know why my signature isn't showing but in 2015, I was diagnosed with DCIS plus IDC. The IDC was stage 1A, hormone+ and HER2+, node negative. Because I was coming off of a long illness, had the same comorbidities then and it was stage1A, they recommended a mastectomy only and I never received any other treatment. However, I was required to have yearly blood tests even after I passed the 5 year mark.
Just looked up phesgo and it's cardiotoxic like Herceptin. I have a heart condition so that's probably why they went with the THP instead.
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Oh I must have not understood correctly. I thought THP was Taxotere, Herceptin and Perjeta. And yes, while receiving Herceptin we have to have heart ECHO's every 3 months. But in low doses, it is easier on the heart. Keep us posted on how you are doing!!
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@grammie2 - How is your lymphedema? Have you started PT visits again?
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No I haven't. I have started doing them myself though. Too much going on right now and it would be hard to fit in the time off from work. My PT folks are an hour away. The edema is def. not as bad as it was at the end of chemo and during radiation. How's your skin from radiation? Aloe was a huge help for me too.
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I'm glad your lymphedema is better. I hope the videos helped! Tan this morning after having two radiaiton free days. I know it will be red again after today's treatment though. No pain whatsoever…my mind feels like it should be painful because of how red it is. It's the weirdest feeling…lol. I have PT today. Mine is an hour & half away, but it's what my insurance will pay for so that's where I'll go. I'm so glad to have my radiation and treatments closer to home though. It's much nicer driving 30 minutes each way over 1.5 hours each way.
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Hi. You are correct re THP. What i meant was that it seems that my doctor opted to go with only the herceptin and perjeta as the 2 cardiotoxic therapies instead of the 3 in phesgo.
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Hi ladies!! Hope everyone is doing well! I've learned of yet another BC diagnosis in my little small town, population 13K. This is #6 within the last 3 months. So stinkin sad.
Me, I still over here whining about my non growing (in length) and super thin hair. Actually going to my hairdresser this evening and let her trim it a tad. The sides and neck are the longest and the sides just want to stick out every which way and the neck wants to curl up. At least where it is getting a little longer all over, it hides the thinning a bit. My MO said she was fine with me using monoxidyl but that will be my last resort, cause if it does work, I will have to continue it forever. I did order Nioxin shampoo that had been mentioned a lot on other sites. Started using it about a week ago but nothing happening yet LOL.
Yall check in when you can!!!
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Hello everyone!
@chocomousse I'm sorry to hear about your recent diagnosis. However, HER2+ cancers are usually very responsive to treatment, so I believe that even low doses of chemotherapy can have the intended effect. I hope you experience few side effects!
However, your chemotherapy already includes Phesgo, grammie2 is right. Phesgo contains only the H and the P (Herceptin + Perjeta). You're going to do THP, which means Taxotere + Herceptin + Perjeta. 3 letters. It might be in lower doses, but those initials stand for those 3 components. Good luck — your doctor knows what they're doing, and everything is going to be fine!
@grammie2 things are getting back to normal on my end, still with some side effects from the treatments , but definitely improving. As for my hair, I’m in the same boat as you… I can tell it’s definitely growing. I probably have about 2 cm in length overall - but the top of my head is still very sparse, and I can still see my scalp. I’ve been applying some drops to my scalp (natural ones, nothing like minoxidil) and taking some gummies with collagen, biotin, and zinc. I feel like my hair was “stuck” for a long time, but it now finally seems to be growing at a better pace over the last few weeks. Still, I’m nowhere near ready to go to the hairdresser yet.You have to wait a while for the shampoo to start working. I don’t know that specific shampoo, but I’ve been applying my drops for over a month and I’m only now starting to see a difference. It might even just be a coincidence and have nothing to do with the drops 😅
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I have been an advocate of the principle that nothing harsh or artificial touches my hair (unless necessary to save my life). That includes color and heat. I made the mistake of using purple shampoo for several years. Quit that, and now I am wearing a bob (better for thin hair), but I am using heat to get the bend at the ends. I think my hair is getting stronger, with fewer short ends.
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@catarina_fm glad to hear you are improving!! Some of those SE's just like hanging on a bit! Ugh! My trip to the hairdresser will not be a normal one for sure!! Just some snips to even things up as the hair grew in different stages. It still feels like duck feather fluff! What drops are you using? My friend made me homemade rosemary rinse and I used it for a couple of months but no real difference. I'm really afraid a lot of my follicles are chemo fried 😭
@chocomousse how's it going? Any updates?
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@grammie2 I'm using these drops: I'm using these drops: - the formula is 99.9% natural and it's suitable for everyone, even pregnant women, because it doesn't contain artificial chemicals. I'm like @mcbaker and really prefer to avoid putting chemicals on my head. In fact, I'm generally trying to be more careful with these things— even the deodorant I'm using now is natural. I've always been somewhat cautious about these things, but now I'm even more so. There's no evidence that this causes cancer, but I think after the dose of chemo we've had, it's better to try to avoid anything too harsh.
I think your hair is still going to grow back strong! My MO says that some people just take a bit longer, and we’re probably among those people.
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Thank you @catarina_fm
@grammie2 Nothing much except I had new cancer marker tests done on 4/11. Compared to my cancer marker tests from 2/18:
My CEA went from 13.8 to 13.7
My CA27-29 went from 33.6 to 36.1.
What's scary is that my alkaline phosphatase went from 129 to 216 which could signal bone mets as my liver function tests were normal. My PET scan didn't show any masses in my bones but something is causing it to spike.
It's also weird that my CA27-29 is still in the normal range, yet I'm stage 4 with mets. Hopefully, it means that the HER2 activity is still manageable.
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@chocomousse Hi there, I've been trolling you all for few days. I'm so sorry for the recurrence. Curious - did you have any symptoms that alerted you that something was amiss? I'm also stage 1 a with only treatment BMX given it was a tiny focus. I wasn't offered herceptin or blood markers.
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Btw I luv the nickname @chocomousse ! Makes me hungry for dessert!
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@snm No symptoms. I've been given cancer marker tests every year since 2015 and my CEA marker went from 4.8 in 2024 to 13.8 in 2025 so with that, they scheduled a PET scan and that's where the mets were seen. After that, I was scheduled for a biopsy which confirmed that it was hormone negative, HER2+, grade 3.
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Hi ladies! Did your RO tell you not to be in the sun? I'm on a few sites and I don't remember if we all talked about this. Maybe @catarina_fm ? I'm starting to worry a bit from some of the talk on the Reddit BC group. Is the sun concern for the radiated area or whole body in general? Of course I'm still on Phesgo so I plan to slather on sunscreen and my swimwear is nothing skimpy (tank type and shorts). I haven't "sunbathed" in years but I do plan to be out on the beach and in the water on our USVI trip. We are required to use "reef safe" sunscreen so praying it is protective! I did mention the trip to my MO and she never said a word of caution.
Still fighting edema and I'm sick of it. I have started lymph drainage every day. So hopefully that will help!
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@grammie2 Mine said to be careful with the radiated skin in the sun. My PT also suggested wearing UV shirts and the hat that has the neck flap on it. As far as water, I read somewhere not to use a public pool or hot tub while you have a port in. I'm going to ask about that at my next infusion, which is Wednesday. The aloe and shea butter seem to be helping my radiated skin tremendoulsly. I'm SO excited I only have 7 radiation treatments left! Two are for the whole breast/clavicle/under arm areas and the final five will be targeted to where my tumor was located. This coming week is only 4 treatments (they're closed on Friday for maintenance) and then 3 the following week and I am ringing the HELL outta that bell…lol!
I hope you all have an amazing weekend and Easter!
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@beekaycro24 thanks for the info and please share what they say about water. We are staying in Airbnb's and no plans to do a public pool but might this summer some time. I had not even thought about that being an issue with the port!
So happy for you that you are almost done!!! I only had 16 and I was so tired 1/2 way through. Other than work, I didn't have energy for anything else!! Make sure to share pics of the damage you do to that bell!!!!
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@grammie2 wear whatever sun protection that is recommended and enjoy the warmth, the beach, the ocean breeze! Make sure you exfoliate your feet in that US Virgin Island white sand! You deserve the free spa treatment!
@beekaycro24 ring that bell like a Rocky Champion!
@chocomousse I'll be sure to ask my MO this May about blood tests! Thank u for the insight.
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@grammie2 my recommendations are more or less the same as
@beekaycro24. I can't expose the irradiated area to the sun for a year after radiotherapy, I can't go to chlorinated pools for six months after radiotherapy (In my case, they didn't say anything about the port - they said the skin is very fragile due to the radiation, and chlorine is irritating) and I have to protect myself from the sun as much as possible. I always apply SPF 50 sunscreen on exposed areas when I go for a walk, I wear a hat and more covering clothes to avoid exposing the irradiated area (which in my case went right up to the neck). This year I’m not going to the beach at all. However, if your doctor hasn't forbidden it, if I were you, if course I’d go, but carefully. I’d try to stay mostly under the sunshade, apply lots of sunscreen, and if I went in the water (the sea), I’d do it outside the hottest hours. I think it’s still possible to relax and enjoy it!
@beekaycro24 almost there! When you finish, you’ll see what a relief it is 😁
Happy Easter to all! 🐰
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Hello, fellow warriors! I hope all is well. I only have three radiation treatments left! Woo-hoo! I developed a sore spot near my port line at my collar bone over the weekend. I was given a prescription for Silverdine cream on Monday. OMG! That stuff is amazing! They said to put it on all red areas, so I did. All of the redness turned brown after applying for one day (2x). I wish they had given me that earlier…lol. I also had Kadcyla #3 yesterday and am extremely happy to report the only side effect so far was an achey/tight feeling forehead yesterday afternoon. :) I forgot to ask my onc about the port issue and public swimming pools, but I did message my nurse today. She said to wear a waterproof bandage and make sure it's on super tight before getting in public pools/hot tubs/ and ocean. I had my weekly RO appointment today after radiation and asked about sun exposure. He said to be careful in the sun for a year and half after treatment. Meaning…to keep the radiated areas covered or use an SPF of 15 or higher while out in the sun. Also, to pay special attention to your skin…the radiated areas will burn super easily and quickly. He said it doesn't matter the type/brand of sunscreen, just SPF 15 or higher. I don't have radiation tomorrow due to them having a maintenance day, but it's not doctor free. It's time for my dental cleaning…lol. I hope you all have an amazing weekend!!
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