ER-, PR-, Her2+ Roll call
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@moderators Thanks! I’ve been venturing out for my fave guilty pleasure on the regular: iced mint mocha frap…
And using most of my restored energy to take care of the new grandson. 😍
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Hi everyone! I hope you’re all doing well and having a great weekend! I just finished a long epsom salt soak to ring out TCHP #3 of 6, which I’m surprisingly already feeling mostly recovered from.
I finally got around to watching the movie “Living Proof.” Anyone else seen this? (I made a funny mistake at first and bought the wrong one—there are two movies with that title! One is about Herceptin and stars Harry Connick, Jr., and the other is about multiple sclerosis.)
It’s all about how Herceptin was developed and became a life-changing treatment for HER2-positive breast cancer. It shows the tough battle to get the drug approved for trials and highlights the amazing women who took part in those trials. The film is based on the book “Her-2: The Making of Herceptin,” by Robert Bazell.
As someone with HER2+ IDC, this movie really hit home for me. I learned so much about the journey behind this incredible drug, and it made me feel so thankful and lucky that these treatments are available to us today and making all the difference in our fight. ❤️🥹
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@bailey.boo I LOVED THAT MOVIE!! It made me truly appreciate all the effort that went into the development of Herceptin and all the souls that bravely fought for and participated in its coming to be. I was in tears more than once. It’s a must see for anyone who’s been diagnosed or who loves someone who’s been diagnosed with HER2+ BC. You are so right to bring it this group’s attention. Thank you for bringing it up!
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@bailey.boo that movie sounds great! I think it sounds perfect for a Sunday night movie!! Curious about the epson salt soak. I'm getting ready for #5 next Thursday and a week later both of my boys and families are coming home. (one is in UT and the other PA, I'm in VA) I am so excited to see my grands, Raleigh 6 and Addie 3. We flew to Ogden to see them New Years with plans to go back at the end of June (which didn't happen of course), so it's been 6 months since I saw them. I want to feel as good as possible while they are here! #4 wasn't horrible physically, but emotionally it was rough. I've read a lot about 5 and 6 being tougher. Ugh.
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Oh, I miss VA so much! I hope you have a wonderful visit with your boys and grands! 3 and 6– Those are such great ages! 💕 I hope #5 goes as quick and as easy as possible for you!
Epsom salt is packed with magnesium, which is great for your skin, helps relax your muscles, and improves sleep. Plus, it boosts circulation, reduces inflammation, and supports natural detoxification. After a chemo round, it mentally helps “clear” me and feels almost symbolic, like a reset. I’ve been doing an epsom salt soak at the end of every chemo. I break out all the most luxurious bath stuff I can find, lock out the people and animals, light candles, and play music.
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@bailey.boo thanks for the recommendation on that movie I will definitely check it out! I read about the epsom salt soaks but could not muster the energy to make it happen.
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@bailey.boo thanks for the info on the salt bath. Def. gonna try it.
I hope everyone had a good weekend!!! I am so over my watery eyes!!!! I wish there was a fix for it!
Also wondering if anyone actually did the fasting or mimicking fasting diet during chemo. It would be late in the game for me with only 2 left, but looking more for the benefit of less SE's at this point, not the benefit of tumor response. I know I would have needed to start day one for the tumor response benefit. I'm thinking of trying the mimicking one. I have to start today since #5 is Thursday. From what I have read, it makes your good cells go into hiding which protects them from the effects of chemo. But the cancer cells stay exposed and are hit with the drugs. I guess I'm thinking it couldn't hurt to eat veggies and good fat for 4-5 days, right? I'm not a skinny girl so it might even be beneficial for me to lose a couple of lbs haha. I have read that a high BMI doesn't have as good of a result as those within a normal BMI. My BMI is 29 which is overweight (but close to obese percentages.
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@bailey.boo that movie sounds fantastic! Will definitely have to check it out. Thank you so much for sharing.
I been checking in on this discussion and am sooo impressed by you all- beautiful courageous people for sure. So happy to hear that you find time to enjoy life whether it is a good soak or playing with grandkids.. that kind of light brightens up my day! 🙏
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I read here about fasting being great before chemo, but I’ve had such low vitamins and potassium that I was afraid to go without eating for a day or two before bloodwork to determine getting my chemo. I’m eating a lot more fresh whole foods and a lot less processed frankenfood since my first chemo, and I do notice an improvement in my side effects and how I feel overall.
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Holy late night rabbit holes. Chinese hamster ovaries…. Who would’ve thunk? I love that it also has its very own acronym 🤓
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@bailey.boo I have some bloodwork issues as well. The low protein consumption has caused me to decide against it. I am going to try to eat less carbs though. Dexamethasone causes high sugar levels anyway.
And that is crazy about making of herceptin and perjeta! And speaking of which, how many of you had/will do both of these after radiation? I thought I understood I would get herceptin for around a year, but no mention of adding perjeta. Someone posted they were getting both and I can't find the comment.
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Me! I’ll be continuing the combined shot after chemo. It’s called “Phesgo,” a combo of Perjeta and Herceptin.
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Yeah, I get Phesgo now on treatment day. I go Thursday for #5 and going to try to remember to ask if I will get both or just Herceptin. I hate the thoughts of being without hair for another year or so. But guess if that's what it takes to keep from a recurrence, then it will be worth it.
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I’m getting both via infusion as well…11 more treatments. I wonder why I can’t just get the shots, I may ask. I start radiation today for 4 weeks as well. Hamster ovaries huh..very interesting.
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I'm getting the shot during chemo. Takes like 5 minutes. I hope they will switch it for you! So have you noticed hair growth? I read that Perjeta causes hair loss. Ugh!
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@grammie2 no hair loss, my hair is growing in, it started as a soft white hair then the darker started a few weeks after. My onc said no hair loss and so far is true. ALL of my hair is growing of you get me….i lost some of my brows and lashes after treatment 6 but its coming back.
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That's awesome news! My brows and lashes have thinned already. Noticed it around #3. Only perk about this hair loss is no shaving my legs LOL. On my arms, I Iost the darker hair but there is like a short layer of soft whitish hair/fuzz. Still have very sparse fuzz on my head, but it doesn't seem to grow longer. I did a very short buzz cut before #2 and it is still about that length….what sprigs are left that is LOL.
Congrats on only having 11 more to go!
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@grammie2 yes i lost all of the hair on the top of my head but not the sides as much, i looked I had male pattern balding. Lost most hair “down there” except for like 6 that hung in there…one eyelid has extremely sparse lashes and the other is fairly normal. It’s all so weird but this whole process has been interesting to say the least. I do feel a little nauseous the day after immunotherapy but im hoping it was an anomaly after the first one because i was anxious. Honestly, im still coming to terms with this whole thing (cancer diagnosis etc) as it all happened so fast I havent had a chance to deal with the trauma of it..
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My hair was thinning even before chemo. But I am not totally bald anywhere on my head. Weird. My lashes and brows are thinner on one side vs the other too. And yes, I have a few on the downside hanging on for dear life LOL.
I agree on the not fully grasping this whole cancer diagnosis. It's been a whirlwind without a lot of time to digest. But honestly, I'm a little grateful that I have dwelt on it a lot other than just doing the things that I have to do and focus on those things. I am a person of faith, and giving all the worries to God has been such a blessing. I still get a little down and worried for a spell, but it doesn't last long. But it is a lot to digest for sure!!!
Are they able to give iv nausea meds with the immunotherapy like with chemo? I'm wondering how I'm going to react with radiation. Sounds like with chemo it affects folks differently, but fatigue seems to be common. And I am dreading surgery. I've never had any surgery really. Chemo port was the first time I was ever in a surgical room. And I was only given propofal (Michael Jackson drugs). No tube down the throat.
Had #5 of 6 today and it went ok. I've had some lower leg edema going on with the right leg swelling a little more than the left. Onc said she is sure it's chemo related but ordered an ultrasound just to make sure it's not a clot. Put me on lasix for 3 days but gave enough for 6 days. She wants to see how I respond in 3. And she ordered my 3 month follow up ECHO to make sure my heart is handling the drugs ok. I should have those tests next week. So I'm taking the lack of urgency for the ultrasound to be she's pretty sure it's not a clot. BP and bloodwork don't show anything alarming. This chemo is no joke and can cause a lot of cruddy stuff!!!
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@grammie2 I, too am a woman of faith. I prayed all through my first radiation today. It really was nothing. They tell me the fatigue starts two weeks ish in. I am only doing 4 weeks and the tiredness will persist a few weeks after I’m done. I’m told it’s nothing like chemo tired. I’m also grateful I didn’t have loads of time ahead of time to think about this diagnosis and worst case scenarios etc. I think it’s just all hitting me AFTER chemo after surgery. My lumpectomy was EASY and I was home same day - - not sure which surgery you are having. I wasn’t intubated so they gave me similar drugs to propofol. I had some discomfort when I woke up but none after other than the armpit where they took my nodes. It’s been a whirlwind for sure. My edema worsened post chemo so keep an eye on that, it’s not as bad now two months out. You are ALMOST through the hardest part. While I still have a little neuropathy and occasional muscle pain, most of my worst side effects have subsided. You will feel better! Thinking of all of my sisters in BC today. 💓
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I'm with you all on not having dealt with trauma. When anxiety or sadness kicks in, I push it down and remind myself to be thankful it’s not worse and stay positive. I’m almost afraid to let myself process things because treatment seems to be going well. My way of dealing with things is to read and absorb everything my chemo brain will let me. I try to stay active online and now with a local in-person support group to listen, learn, and reflect. I have a rosary wrap bracelet that I use like worry beads. It helps me calm and breathe. I listened on a PTSD and Risk of Recurrence call this week with Unite for HER Wellness while I was cooking dinner this week, and it walked you through putting together a recovery plan. You can find it on YouTube and their website.
GREAT news on hair regrowth and getting #5 of 6 behind you, @grammie2. I hope your edema goes and stays away, and I hope you get back all glowing test results! I’m on pins and needles to see what the chemo is doing for/to me, both good and bad. I usually carry high blood pressure, and it’s been beautiful on chemo, so I’m hopeful! I haven’t had any hives since starting chemo, so being on it seems to have calmed my body from freaking out in some ways.
I hope your fatigue gets better soon, @djschmidt1 !
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Thanks @bailey.boo ! Working from home today so trying to focus. My blood pressure is usually on the high side of normal to just a tad over. Chemo has put me into a low blood pressure range. Usually gets back up about a week before the next round. We will see how the lasix does. Good thing I am at home the next three days LOL.
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@bailey.boo omg I just finished watching movie about herceptin -"Living Proof" and I immediately had to come to this community and encourage you all to watch it. It is freaking incredible how lucky we are to have herceptin as a treatment option!!! Thank you to all the women who participated in those trials - I'm so grateful to them and to the researchers. ..this movie is definitely a tear jerker. ..so inspirational.
Thinking of you all in this community right now 🤗
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Has anyone had a midway scan (I'm having 4 TCHP)? I had a CT scan last week and my oncologist messaged me that I am stable. Though the left MBC has grown 2mm since I was diagnosed in March. The right lung cancer has shrunk by 2mm since diagnosis. I really thought the chemo would shrink them all. The good news was that the previous lymph node that was lighting up isn't anymore so that is clear.
My oncologist is on vacation though I did message her to say I expected shrinkage. She said they would do more tests on the biopsied MBC tumor. Just feeling down on not seeing more results and hoping to see if you all had similar issues.
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@fossf56 I’m sorry for the disappointing news of not seeing more response like you’d hoped. I think what will happen next is they’ll try to see if change happens a little later and maybe they will add or shift to some of the other options in the arsenal. For what I understand, there are a lot of things they have now, and can try to see which might work for you. I did not have a mid treatment scan, I think because I hadn’t been diagnosed before last year, and they did not find MBC. My guess is that your mid treatment scan will potentially impact your course of treatment and that’s why they do it. I’m glad they did that check in and didn’t wait until you were further along in the course of treatment. Knowledge hopefully = power. We’ve got you here in the meantime with love and care. Please let us know what happens and what the oncologist says when they get back.
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@fossf56 sending up prayers for you as well as well as for your docs to figure out tweaks to address and obliterate the stubborn mass. Much love and hugs your way too. ❤️
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Thanks for good thoughts all, it turns out after my oncologist appt today that I have triple neg mbc not what I was being treated for, so the clinic f*** this up. And I'm pretty furious and am searching for a new oncologist as soon as I can.
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I wanted to share some good news with you all- I got my 3D nipples tattooed today! Just a little bit of discomfort but not bad at all. I used lidocaine jelly prior to tattoos. Ibuprofen after as it seemed more sore after than during the procedure. Pretty amazing! It will take a couple weeks to know what final results are..but so far so good!
Maybe I'll be brave for a decorative tattoo next time!
hope you see better days.. I'm very sorry @fossf56
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foss - sorry to hear aboat the mis-diagnosis. Hope you can get on a useful treatment regime soon.
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