ER-, PR-, Her2+ Roll call
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@grammie2 oh yes, the dropoff of support after chemo must be a thing because most of my people totally went away as well. Dr Tepilinsky had a reel on her page that this also is the time when we start to process what weve just gone through. Im not depressed but i dod notice i can cry some days at the drop of a hat…I am a crier but this is different. I know it’s all part of the process (which goes way beyond active treatment in my view).
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Glad you are doing ok @jessybessy! Are you using Pepcid for heartburn? I had it horrible the first 3 treatments. They would even give me an IV dose at every chemo and fluid infusions.
@catarina_fm please let us know what you find out tomorrow! Praying for great results. And funny you mentioned that about the HR positive ones. At radiation the past two days, a lady who looked familiar has been at radiation as I am leaving. Today I spoke to her and told her she looked really familiar. We figured out that we were at the same chemo infusion place. She asked me about my treatment and if I'd had surgery. I explained that I was HER2+ and had chemo first, then surgery and now radiation. I told her that I had a complete response to chemo praise God. She then told me she didn't know what HER2 was but hers was hormone. Then she said hers only shrunk about 25%. I felt so horrible for blurting out about my complete response. We chatted a bit but she had to get into her radiation treatment. I wondered why hers had only shrunk 25%, but your post explained that a bit. I cried all the way home for her and prayed for God to comfort her because I was afraid I had made her really concerned that she still had a tumor at surgery. Ugh!! I'm going to read up on that type and hope to talk with her more.
So far no SE's that I see or feel from radiation. PE is a different story LOL. My boob is sore where she is working on the seroma! But we both agree it is helping and def. keeping it from getting worse. I still am anxious when I am getting the treatment. But today seemed quicker and seemed over in no time.
Hope everyone is doing ok!!!
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Sorry @djschmidt1 I didn't see this earlier. That makes sense about starting to process. I struggle with the feeling better, feeling crappy, feeling better and on and on. Then when I finished chemo and feeling decent, I had surgery LOL. Then start feeling a little bit better, then stress of radiation. Thank heavens Phesgo seems to be leaving me alone and not messing with anything ☺️ I'm sure there will be a new "phase" once radiation is done and then after targeted therapy ends. Can't stress enough about how thankful I am for each of you! You are all such warriors and help keep me uplifted and on track! Hugs, hugs and more hugs to all!!!
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@grammie2 I have a friend who has a triple positive tumor and had a reduction of only 50% of the tumor, and in the pathology results after chemo (she did AC and TCHP like me) and surgery, there was still 50% of the active tumor. She is currently taking hormone blockers and Kadcyla. The good part is that he tolerates the treatments very well and even went on vacation to Egypt, 2 months after the surgery! She skipped the radiation part. Therefore, we cannot be discouraged, whatever the result. There is always hope.
My MO said that at the moment HER2+ HR- are some of the ones that have the best results in terms of reduction because of the blessed phesgo. If it had been a few years ago it would have been much more difficult. With TCHP, the faster the tumor cells grow, the better the chemo works!
The "good" part about hormonal cancers is that women can continue taking hormone blockers for 5 or 10 years and we can't take Phesgo or Kadcyla for that long.I was doing some research and realized that HER2+ cancer has an overexpression of this protein, but there are other "healthy" cells in the body that also have this protein but in normal amounts. One of these cells are the heart cells. That's why we need to carry out cardiac monitoring throughout Phesgo intake.
However, my MO said not to expect side effects from Phesgo, because after all, it is designed to only attack cells that overexpress the protein (cancer cells), not the normal ones! Of course it will end up affecting healthy cells too, but much less. She explained to me that generally, only those who have previously had serious heart problems can experience more SE.Keep telling us how the radiation is going. I'm happy because it seems like you're adapting well! 🌹
Tomorrow I will be back to tell you what they will tell me at my pre-operative appointment 🙏
Take care!
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Hi guys. Would love to hear some stories of women thriving and living their lives after going through all of this. I am on day 4 after #3 of 6 TCHP (stage 2a, HER2 positive/ER neg) and struggling to see the light. I miss cancer not being a daily reality for me and its difficult to see at the moment how this will pass.
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Day 4 after Chemo #3 was so rough on me, too. I stayed in bed ALL day and started running a fever. Day 5 was better and day 6 great…but day 7? Super tired again (maybe from thrush?). So far so good on day 8. You will feel better, I promise! Sending good vibes and prayers your way!
Question for the group - did any of y'all develop a super, dark red rash on your body? I'm a bigger girl with an apron belly, and have a rash all the way under it. I also developed a red, bumpy rash under my boobs. I read online this is from the chemo drugs and is actually a good sign they are working, but man! It looks horrendous. I alternate putting hydrocortisone cream, anti-fungal cream, and a prescription Nystatin cream that my husband had on it. Luckily, it's not itchy anymore. I plan to send pics of it to my onc and see what they say. I've also got red patches on my hands, but figured that might be from the neuropathy? idk. I thought I was going to make it through treatments easily, but this last go round has me questioning that.
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hi ladies! @beekaycro24 i didn’t have a rash on my body but my face had issues after every treatment. I would get a rash day two from steroids that would susbside and two ish weeks after treatment I got these horrible white bumps on my face, worse on my forehead seems like i recall it was folliculitis or something and i had to use prescription cortisone on it. I had so many darn side effects, muscle pain, leg and foot cramps, super fatigue, diarrhea then constipation, rashes and finger and toe numbness..my hands turned brown..it goes on and on. The good news? Im six months out from chemo and i feel “pretty” normal. Im just starting back to a walking routine. Im really seeing light at the end of this tunnel. I do still have “discomfort” at my surgery site and armpit but i guess thats normal…it will happen lovelies, it really will. ❤️
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@catarina_fm good
Luck with today’s scans. Let us know what you learn! Hoping for the best news.
Looks like I’ve got a complication and will need a corrective surgery in the new year. Oh well. My PS is confident he can go in the the original scar and put a sling in to fix things. He wants to wait another to months to see if it improves on its own. Sigh. I’m alive and well. That’s what counts. I’ll take it.
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@aborayis I hope it will repair itself and you won't have to have another surgery! I know it's frustrating to say the least.
@jessybessy whew I agree about seeing the light. Dealing with cancer is a rollercoaster. It's hard to manage all of the emotions it brings. Hang in there! I remember at the end of chemo and still struggling with the SE's I wondered if I would ever feel really good again. I am feeling lots better.
@catarina_fm I hope you are doing ok and got good news! And thank you for sharing all of the info! I enjoy learning more about the HER2 stuff and so thankful how treatments have evolved with such positive outcomes! I remember reading about breast cancer before I knew what type I had and HER2+ sounded scary. So when my surgeon told me I was negative on the HR and PR(?) but she said she gave me a "smiley face" for being HER2+ I thought she was crazy because of all of the things I read. But she and my MO both said that statistics had not caught up with the treatments and not to pay attention to data. I now see they were right.
@beekaycro24 sorry you are dealing with skin issues! I had red and dry patches on one side of my face after the first treatment. It peeled like a bad sunburn. I hope they can give you something to help it! I wonder if Benadryl would help since it is most likely an allergic reaction?
PT is going well for me and I ordered a hand held massager that she uses during treatment. The area tends to tighten back up a couple of days after therapy so if I can use it between treatments, maybe it will help. She is teaching me how to open up my nodes to try to "retrain" them to work without the missing 4 nodes. Praying this will prevent lymphedema in the arm and cording. She's also given me some exercises for this as well. This seroma is a pain!! So far I'm not experiencing any issues with radiation, other than still being super nervous during treatment. This causes me to breath more heavy during treatment and with having to hold my breath, I feel panicky. The last two went super quick so hopefully I'm getting the hang of it. I was early yesterday and they took me back about 10 minutes before my scheduled appointment and I was dressed and headed out at my actual appointment time!
Everyone have a great weekend and can't wait to hear everyones updates. Hugs and love to you all!!! We've got this!!!!
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Isn't crazy how much we are learning not only about our bodies, but medically? I feel a little bad because I never truly knew what people with cancer were going through. While it is not all "bad" times, it is still tough. My sister-in-law passed away in 2017 from brain cancer….Glioblastoma Multiforme, which is the most aggressive type of brain cancer. Her treatments were not anything like ours are. She underwent surgery to remove as much of the tumor as they could, but being it was spiky-shaped, they knew they would never be able to remove it all. She then had radiation therapy…never chemo. While, my daughter's mother-in-law has Stage IV breast cancer, I just never realized what all she was going through. This is definitely a very humbling experience. I didn't come here to say all that (clearly it was on my mind), however, but to share this article on chemo skin rashes I read online yesterday. My doctor did say I could take Benadryl or Zyrtec if needed, but being that it's not itchy anymore I have chosen not to. I am also to mix together the otc hydrocortisone and anti-fungal creams and apply 3x per day. It's already so much better. My hands are puffy and tingly today, but not as red. This could be Hand Foot Syndrome, not to be confused with Hand Foot Mouth disease. Anyway, I've ran on enough for now. Y'all have a good, relaxing, stress-free weekend!
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Hi ladies!
I hope your weekend is going well.
I had my pre-op appointment on Friday, everything went very quickly, there are so many people in that hospital that they end up rushing people a bit during the appointments... At most, I must have spent about 10 minutes with the doctor, but I know I'm in good hands. There were still no results from my MRI but the doctor says he does not doubt that the tumor has shrunk dramatically. They will have access to the results next week and if there are any problems or changes in plans, they will call me.
I'm going to have surgery exactly 3 weeks after my last chemo (December 20th). They are planning to do a partial mastectomy, they will remove the area of the mass and the margin, and they will remove at least 2 nodes (the ones that tested positive in the biopsies) but the doctor during the operation may decide to remove more.
They also informed me that there is a possibility of having to have another surgery (about a 10% probability) if the margins are not clean. If everything goes well, I will stay in hospital for 3 days.@jessybessy there are many women who are doing well 10 and 20 years after being diagnosed with Her2+ cancer. You can take a look here: https://community.breastcancer.org/en/discussion/740304/her2-positive-anyone-10-years-out#latest
Don't loose hope! The probability of being cured is high! I hope you feel better now. I'm on day 4 after chemo 3; this time, I'm better than after the 2nd one.
@aborayis I hope the solution is simple! Maybe this will recover on its own, I'm praying for you! Keep us updated!
@grammie2 I'm glad you're now able to deal with the radiation better! Try doing things that make you feel better, the massager seems like a great idea! You're getting closer and closer to the end 😉 Now a question, are you taking phesgo during this period of radiation or did you stop and start again later?
@beekaycro24 Are you better now? I get huge pimples on my face for about 7 or 8 days after chemo, but they disappear quickly. I also had these problems with my hands and feet (nurses said it is hand-foot syndrome, yes… it is common!), so I've been carrying ice for my hands during the infusion. I had dark spots on the soles of my feet! How are your nails?
Take care!!! have a good rest of the weekend!🌻
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Bless you, how are you feeling about your surgery? Must be so nice to nearly have the chemo part over.
I'm feeling better quicker than I was with #2 actually (#3 seems to have gone a little easier on me), but have just had mid point MRI today so let's see how that goes. I can't feel masses anymore and nipple is no longer inverted so hopefully this is a good sign...
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@jessybessy I'm really happy that you're feeling better! At least during AC chemo I always felt less sick with each treatment. I think it's because we learn to deal with the side effects! Of course it's not completely predictable because we never know how we're going to end up, but I think we're all dealing with this as well as possible 😊
It's definitely a great sign that you can no longer feel the mass! From the third treatment onwards I started to see a big decrease and at this point I no longer feel anything.
I realized yesterday, from what little my surgeon talked to me, that being her2+ and without hormone receptors, it is almost certain that the reduction in masses will be enormous after chemo. So much so that he wasn't at all worried about the missing results of the MRI. The treatment makes us feel bad, but it actually works! And then we recover 😊 we will be over this in no time! Just a little patience now 🙏
I'm really anxious about the surgery, but on the other hand I want it to be over as quickly as possible.
Take care and do things that make you feel good! 🌷
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@catarina_fm My rash on my body and face is clearing up nicely, however, my hands are another story. Surprisingly my nails are in better shape now than before my chemo. I use Sally Hansen Vitamin E Nail & Cuticle Oil on my nails (hands & toes) every morning before applying lotion. My hands…my hands! They are so swollen, tingly, sensitive to touch…my palms and my feet are all fine. It's the top of my hands that are red and puffy and in between my fingers. It hurts to even put on lotion. I took a Tylenol last night hoping to bring down the swelling and am applying Aquaphor today. I read online it's from the Taxotere. I'll be okay…it's only temporary!
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@beekaycro24 this is good because I have some black nails and one of my toenails is in really bad condition, it looks like it's going to fall off. I have been using a special nail polish on my fingernails that really helps but my toenails are already very damaged.
Another thing that I find a little strange is that my nails grow a lot and I have to cut them every week. And before cutting them I usually put them in lukewarm water for 10 minutes to soften them, otherwise when I cut them they crack. Do yours grow too?
As for the swelling, yes, it hurts... it helped me to put a lot of lotion on my hands and wear cotton gloves to help absorb it better. This will pass, but it's very annoying 😟
I feel that my skin in general becomes very thin and sensitive but recovers quickly. However, It doesn't recover completely until the next treatment and that's the problem!
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Thinking of you with the surgery lovely and hoping for the best outcome for you. If you want to WhatsApp each other or anything, feel free to PM me for my number 😀
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@catarina_fm Mine are the opposite. They have pretty much stopped growing…especially my toe nails. I trimmed them on September 18th (the day before my first chemo treatment) and have only had to trim two toenails since then. I keep my fingernails filed short, but they're not growing as fast as they normally would. I'm excited to follow you on your surgery journey! You are going way faster than me. My onc mentioned at chemo #2 that I would get scans in a couple of months, but that was it. Like you, I just finished #3 (10/31). I'm thinking he'll mention it at my next round.
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Hey ladies! @catarina_fm I am getting Phesgo shots every 3 weeks. My MO stopped them for surgery and restarted about 3 weeks after surgery. She said it was safe to get those during radiation. I had two nodes positive and my surgeon removed 4 which she told me ahead of time she most likely would. (only telling you so you don't worry if they take more than the two).
On the nail topic, I did ice my hands and feet during chemo. I've always had thick fingernails but they seemed to become thinner during treatment. I kept them painted all through chemo as well. They are a little lifted at the fingertip on a few nails, I have multiple ridges across them (I can count at least 5 different lines of them) which they said was a sign of trauma from the taxotere. I really thought mine were going to lift and fall off but they never did. I did soak them periodically in equal parts warm water and white vinegar. I think nail problems can occur a few months post chemo too.
Yay on all of you with shrinking tumors!!!! That's awesome!! And I never had a mid chemo scan. I thought I would but MO didn't order one. I wish they had because I still worry it might have spread between the first scan and the time chemo started working.
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Hi all! Just trolling along and so amazed at everyone's strength taking it one day at a time! I hope all the excellent chemo/treatment tips are complied some day- lemon water, Vaseline on nostrils, etc etc
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@grammie2 ok, I had that doubt, I also had the idea that Phesgo had to be stopped at the time of the surgery but I wasn't sure. Thank you for the tip on the nodes, I think they should remove more nodes in my case, because I had 2 positive biopsies, but when they decided to do more biopsies on the lymph nodes, I had already undergone 3 chemotherapies and they were no longer able to detect any more nodes to perform biopsy. But from the MRI, I should have at least 3 affected nodes! So I prefer the surgeon to take a few more, just to be safe.
Well, my fingernails are decent, my toenails not so much. I only put ice on my hands during the infusion, and I also only put nail polish on my hands. Now I regret not having taken the same care with my feet! My nails stopped growing during AC chemo but now grow normally with taxotere. I also no longer have completely bald areas on my head, I have about 2 or 3 mm of very thin hair all over my head, evenly. The only thing I don't have is eyebrows or eyelashes.
I also wanted to tell you something else, which I asked my MO at the beginning of chemotherapy: From the moment you have the first infusion, cancer cells start to die. If the cancer had to spread, it would have been sooner than that. I had the same concern and they explained to me that once the chemo starts circulating in the blood, the cancer no longer spreads. We only feel a decrease in masses later because the body takes a long time to reabsorb dead cells. So don't worry about that! I'm more worried because it took 6 weeks from my PET to the start of chemo and I don't know what happened in that interval. But from the moment I started chemo, I knew that there was no longer that danger.
@beekaycro24 this is because I had 4 infusions of AC first and now I am undergoing only 4 of TCHP. 8 in total because I had a chance of already having cells circulating in my blood before the start of chemo (that's why I didn't escape the horrible AC). I'm sure you'll be called in for a scan soon! How are your hands? Do you notice any improvements?
@snm this sharing of knowledge between us has been great! It's a big help to understand how others deal with things and it's helping me a lot 🙏
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Glad you stopped by @snm !
@catarina_fm that's good to know about the spreading and it does make me feel a little better. I had one node positive at ultrasound and a second at PET scan done a week later. The second one probably was already cancer at ultrasound, but wasn't enlarged like the first so they couldn't tell it was until it "lit" up on the scan. My treatment started right at 3 weeks from the scan.
Hope everyone is having a good week and feeling better since their last treatment!
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Just checking on everyone and hoping no news is good news! My week has been great - I've been able to taste for the last three days…WOOHOO!! I'm enjoying every minute of it because I know after my treatment next Thursday, it will be back to no taste. Fingers crossed it lasts until then.
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@beekaycro24 great news! Take the opportunity to eat things you like 😊 I think that until the next infusion you won't have problems again! Fingers crossed🤞This time I lost my sense of taste like never before... my mouth is sore and there's nothing I can do to help. I tried everything. The nose and gums bleed a lot, regardless of whether saline solutions and mouthwashes are used. I hope my good days come quickly and that the rest of you ladies are well 🌷
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Hey ladies!! @catarina_fm sorry you are having the gum issues! That's the worst! Mine was bad with the first two treatments, but got a little better. I started only doing soft foods starting the day after chemo for about 5 days. The least bit of crunchy food seemed to scratch my mouth and hurt.
Has anyone heard from @bailey.boo lately? Praying things are going well!
Today was a busy day for me. Had a Phesgo injection, PT and radiation #9 of 16. It rained here all day pretty hard and pretty chilly. Yuck! Starting to look a little pink and maybe a little more tired. Went to bed pretty early last night and probably will again tonight. One thing I read about radiation fatigue was that resting doesn't help much. PT is helping a little with the seroma, but she said today I have fluid in that breast as well. She worked to move it out so hopefully it won't be an issue after a few treatments.
Oh anyone else with a port find out there is a Heparin shortage? Due to hurricane Helene and a manufacturing plant that is in NC and was damaged. Instead of flushing with Heparin, she used saline with a special "technique" that is supposed to work as well as Heparin.
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Hi! I'm here!! I keep trying to catch up and drafting a response, then I don't get to the last page and more posts roll in and I'm catching up again :D
I'm doing good and need to catch up all over again! Love and hugs to all of you! I miss checking in here with you all daily. I've been so busy with work and volunteering lately. Things should hopefully be calm again after this week.0 -
Hey all! Just saw my bloodwork from my Phesgo injection appointment Thursday. My platelets are down. They always dropped during chemo, but I assumed it was the TC of our TCHP treatment. My MO stopped Phesgo from the end of chemo until about 4 weeks after surgery (so around 2 months of no chemo or Phesgo). My platelets were way up, middle of the good range. I'm having trouble finding SE's of just Phesgo. They all seem to include SE's during chemo, so I don't know if they are chemo SE's or Phesgo SE's. Anyone on just Phesgo with ideas? Plan to message my MO and ask about it.
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@beekaycro24 thanks! I had looked at the official Phesgo site and it says "common side effects when given with chemotherapy" so I couldn't decide if those were SE's if you are getting Phesgo without chemo. Guessing I'm in for rollercoaster platelets again.
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Hi guys!
Fortunately, I'm better (my mouth is still not 100%) and I still have almost 10 days until the next infusion. 🥰
@grammie2 I found some specific information about platelets on this website:
https://www.cancerresearchuk.org/about-cancer/treatment/drugs/trastuzumab-pertuzumab
and yes... It seems it's one of the side effects 😟 I hope it gets better!
@bailey.boo Hi, I'm glad you're getting back to your normal life! I have "seen" you on Instagram and you have the cutest dog ever 😍
I wanted to share something with you guys, I started putting ice on my hands during the infusion since I started with TCHP and look at the difference in my nails! Today I took off the protective nail polish to cut and paint again and it was a surprise when I saw that my nails are already growing normally since I started using ice... for the last infusion I'm going to take also cold water to drink because I've been suffering a lot from the mouth and I can already see that there is a solution!
Take care, all of you!
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@catarina_fm So happy that you figured out a solution - Ice! Nails look good!
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