ER-, PR-, Her2+ Roll call
Comments
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Mary Jo, when I was going through chemo and I'd read of ER-/PR-/HER2+ women reporting that they were "alive and still kicking," it was such an encouragement! It's worth doing! So happy for you!
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hi Sassa! Good to see more who are still doing well. I hope to be able to say it years out from this.
My BS said that my port can come out on June 25th. She does the same removal in her office. I'm a bit nervous about getting rid of the port. I have a love hate relationship with it. My chest is narrow so my BS had to put it under my bra strap. I think if it was not there it wouldn't be so bothersome. But I'm lucky to be able to have it removed - to be done with treatment
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Sassa: Thank you for that. As somebody just starting out on this path, I LOVE your message.
DogMomRunner: Just YAY!
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I was diagnosed several months after the use of herceptin was approved for usage in early stage women .
I thought my oncologist was crazy when she was excited that I was HER2+ and that I was "lucky" to be so.
I now understand why she was excited.
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Hi
Anyone here who also had TCH as neo adjuvant chemo and is now NED for quite some time/years? I really need some encouragement for my mom. Thank you!0 -
Fighting - you can usually tell that by our signature lines. And BTW - you should go to 'my profile' and fill in your Mom's diagnosis and treatment plan. Then make it "public" so we can follow her progress.
I think I've detailed before but yes, when I had a recurrence I had neo-adjuvant TCHP. Then ALND surgery (I had already had a bi-lateral mastectomy two years before). Then AC because I didn't have pCR (the tumor didn't totally disappear before surgery). Then 5 weeks of radiation along with Herceptin for the rest of the year. My last treatments were completed in 2014 - so I'm six years NED.
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That heart clutching moment never goes away from an unexpected call from your oncologist.
I had an appointment last week. Good to go for another year.
Then came the call this morning that my husband picked up while I was in the shower. The message as he delivered it was " Dr. X's called. You need to call for a scan appointment."
A call back and it turns outs they had sent the order over for my chest x ray for March 2021 and wanted to know if I wanted them to make the appointment.
My blood pressure returned to normal after a half hour.
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Sassa, I'm impressed it only took a half an hour for your BP to return to normal! I think it would have been far longer for me.
One time my mother was leaving for a trip (was literally at the airport) and received a call saying that they they needed additional views after her yearly mammogram. So she went on her trip, worrying about a new primary for two weeks, only to return home to learn the nurse who called said they were missing the right breast views. MY MOTHER ONLY HAS A LEFT BREAST!
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Because I had bilateral mastectomies and delayed reconstruction with implants, I do not have mammograms any more.
My oncologist sends me for a yearly chest x ray.
I understand what must have been your mother's frustration with the missing mammogram.
Every time I get hit with the question about the date of my last mammogram (2006, bilateral, 2007 right side only), I brace myself for the sh*t storm that will break around my head.
I now refuse to answer the question at doctors' offices where I have been a long time patient and tell them to read my file.
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Dear All, I just wanted to ask if there were/are people here who lost her2+ and became triple negative, or if you know someone like this? I found one figure that her2+ to her2- happens in 4-19% of Her2+ cases, so basically these people are left with very limited treatment options... Thank you. Saulius
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That is scary.
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Hi Saulius,
I went the other way. Was TN but morphed to HER2 positive. Thankfully because it opened up treatment options for me (I was at the end of standard treatment for TN in Australia) but I do know there are a few trial options or treatment for a fee.
Cheers
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Thank you all. Helenlouise, you are really "lucky" (sorry, stage IV is never lucky) because it is very rare that tnbc goes to her2+. I read it is twice more often that er-/pr-/her2+ goes to tnbc... I just hope morphing to tnbc from her2+ is rare and that it will not happen to us or anyone... Saulius
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Thanks Saulius, I do consider myself very lucky, all round. Although sometimes I do have to remindmyself. Best wishes to you.
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This is my first post to BCO, but I changed from lurker to poster because I have also noticed that not many Er-Pr-Her2+ ladies seem to post here. That worries me a bit....are our subtypes antisocial or just not around??
I am scheduled for BMX in about a month, so of course I am obsessing about survival statistics and RCB and the possibility of metastasis. I was clinically staged at IIIA, and the one lymph node that was biopsied was clear. That being said, my tumor is grade 3 and 12.5x12x6 cm and my KI67 is 60%. I haven't been able to find any posts from Her2+/hormone neg peeps with tumors this large and grade 3. Knowledge is power to me, and the only way I can feel like I have any control over this BC mess is to research everything I can.
Is there anybody out there with a similar tumor size and stats? I would love to compare notes! Oh, and I am 45, I was dx at 44 last November and have just completed my 6 months of neoadjuvant AC-T.
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Kamara,
Welcome, even though I wish you nor I were here!
The reason there aren't many of us here (HR-/HER2+) is that we are the minority in the breast cancer world. The book I have here in front of me says we are only 4% of breast cancers (Kristi Funk's Breasts, The Owner's Manual).
When I was on chemo, I only lurked as well, soaking up information and trying to find encouragement in reading about women with large tumors doing well. I ended up finding the most encouragement following the Triple Positive thread (I even went back and read the entirety of it from beginning to end one night when I could not sleep because of steroids). Even though the HR+ part did not apply, there was a lot of good information about the HER2 positivity and there are some learned women who contribute helpfully and knowledgeably there.
My tumor was only 1.5 x 1 x 1 cm at biopsy but within two weeks, an MRI measured it at 7 x 2 x 3.4 cm and it had invaded my nipple. By the time I had surgery, there was not a cancer cell to be found. Two weeks after surgery I started radiation and weeks after finishing radiation I started a year of Nerlynx, which I still take. My tumor was Grade 3 and my Nottingham Score was 9/9. Like you, my greatly enlarged lymph node at biopsy ended up showing no cancer, which still amazes me.
The aggressive nature of HER2+ cancers is scary, no question. My MO told me on our first meeting that this was once a death sentence but now we experience some of the best outcomes. He has one of the first women to take Herceptin in the early clinical trials in his practice at MD Anderson here in Houston (she lived in California previously). She was literally on her deathbed when they gave her the amount they would give a mouse and her tumors started melting. That was decades ago and she still survives, though it sounds like her days may be numbered now. If you really are someone who loves information, there's a book on the development of Herceptin that will make Dr. Dennis Slamon a hero to you forever. I will attach a photo of the cover.
Have you seen this thread? It's an encouraging one! HER2+ success stories
I found the BMX to be a breeze, and I was 57 at the time, 58 now, so much older than you, though I chose no reconstruction--just felt I wanted to move on with life. I was gobsmacked when they said I was ready to start radiation in less than two weeks! I felt great, but that seemed fast!
As far as encouragement, look up a member here named lkc. This is her tagline when she posts: Linda K dx'd May 05 Stage IIIC erpr-, her pos, 12 pos nodes. She still has no evidence of disease! I could think of others if you'd give me some time! I literally hung on to those stories the whole time I was on chemo. lkc on Looking for HER2+ stories
Remember that aggressive tumors generally respond well to chemo--hold on to that tightly!
Beesy
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KamaraKaye: Yes, there are a few of us ER/PR- HER2+'s on here, but we seem to be few and far between. Now it's clear why. I'm afraid I won't have a lot of advice for you, but just wanted to say hey and wish you good luck as you move forward and as you seek to learn more.
Beesy: Putting that one on the reading list right away, and bookmarking the success stories thread. I have a co-worker who, about 15 years ago, was in one of the trials for Herceptin. She is doing great. I take hope and inspiration from her every day.
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When my oncologist and I discussed treatment options, we couldn't really go by the statistics much, because the sample size is so small for what I had (note "Grade 1" with HER2+!!!). We decided to do chemo with Herceptin. The DCIS that incubated it had grown to occupy the whole breast in the month from diagnosis.
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hi. I was diagnosed last month and done with M on left breast. Er-pr- her2+
I am going for my first chemo today, herceptin and TC.I try to read ahead some Pre chemo Preparation. But still very stress up on this. Not able to sleep for the night. What are the general side effect you all went through? Are you able to work?
I op for Paxman cap. They will only put in during TC but not the Herceptin time. I also plan not to use port insert. Can my vein take the 4 cycle? Remaining Herceptin we can go with injection right?
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No port? No way. That stuff destroys any veins but the hugest.
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Hi Kamara- welcome to the minority diagnosis. My tumor was much smaller so I had a lumpectomy with the Taxol and Herceptin combo. I had 12 weeks of the Taxol and just finished my year of Herceptin.
Beesy- I read that book. I am so glad that I ended up HER-2 positive. It was looking like it was going triple negative at first.
Hi UnrealTarHeel- I hope your treatments are going well and that you're not getting too much of the rain today.
IsMe- I agree with MCBaker about the port. After going through the year I believe it was the best decision I made. I saw many getting infusions that didn't have ports and it was a bit scary.
The port is coming out next week! Woo hoo!
Nice to see all of the HR-/HER-2+ ladies
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Isme - I agree with MCBaker. The infusions are VERY toxic and you will be on herceptin for a year. You should seriously consider a port. Below is a thread that has lots of valuable info to get ready for chemo - whatever your drugs.
Kamara - looks like your on neoadjuvant chemo? You might try searching for that since it seems to be standard for most HER2+ treatments. I had TCHP and did OK. Unfortunately I did NOT have pcR (complete response) so after surgery even though there were 'clean' margins, I took a Herceptin break and had 3 rounds of AC chemo (you can't do Herceptin and Adriamycin at the same time due to heart issues). Then I had radiation and took Hercptin for the rest of a year.
Bottom line - with HER2+ my MO told me not to wait, skip the cruise that I had scheduled & to start treatment immediately. That was 2013. I've been NED now for 7 years.
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MinusTwo, I hadn't snapped to the fact that you had A/C Chemo after TCHP. Since you were pre-Kadcyla, your doc was very wise, in my estimation, even though I'm sure it was not easy. For those of you still in chemo, they would use Kadcyla now if you don't reach a pCR, which is like a smart bomb drug because Herceptin takes a chemo drug directly where it needs to go. Because going into surgery I wasn't convinced the cancer was gone, I was prepared to beg for Kadcyla if need be (it was just getting approval for early stagers). My MO laughed when I told him that, assuring me he would have given me Kadcyla.
DogMomRunner, I had my port out early because there was justifiable concern something was going on with it (did the last few Herceptin infusions in the arm). I was glad to have had it but was also glad when it came out!
UnreelTarHeel, I remember when you were diagnosed, so it is nice to officially "meet" you. 😊
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Hi everyone,
I'm barely around any more but KamaraKaye's post inspired me to reply. Beesy, that's great info and I'll put the book on my long to-read list. I would like to read about but I've not been able to read a cancer book since diagnosis.
I just wanted to hopefully make some people feel better as I was diagnosed Stage 4 ER-PR-/HER2+ almost 3 years ago. I had mets all over and felt like crap. I've been on Herceptin and Perjeta only since December 2018 and have been doing well. Right now, I feel great and have minimal side effects. With Herceptin, it definitely is less scary to have our kind of breast cancer. Oh, I did work this whole time. Currently, my infusions are for 2 hours once a week and I feel crappy the rest of the day, but it could be worse.
Just wanted to give you an example of someone doing pretty well on long term Herceptin.
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Beesy - yup - Kadcyla was just becoming available. My fantastic MO (who has since retired) said he'd like to save that in the tool box if needed down the road.
Henrietta - thanks for posting. You are inspiring.
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Wow ladies, way to step up to the plate! Beesy, thanks so much for the reading and thread suggestions and for the 4% statistic. I have literally scoured the web trying to see how many of us there are with no luck at all.
Henrietta, you are an inspiration to me, and to all of us I am sure. It's great news that you are doing so well on the Herceptin and Perjeta. Just curious, but have you had any GI issues with that combo? I am very thankful to be working from home right now as the Perjeta has me running to the potty way more often than I would want to share with my coworkers!
IsMe-- I have to agree with the group consensus here. I had my chemo port put in 10 days before my first infusion last December and have not regretted it since. 17 infusions so far and I have never had an issue with it.
MC, that's great that your MO let you know up front that we are such a small sample group. That explains why my treatment has been so aggressive from the beginning.
MinusTwo, I just finished the neoadjuvant portion of my treatment at the end of May. I did 4 cycles of AC at 3 week intervals, then did 12 weekly Taxol/Herceptin sessions with Perjeta added in every 3rd week. Finished the Taxol May 29th, then the very next week (last week!) went to 3 week Herceptin/Perjeta cycle that I expect to be on through next March. The fatigue is really getting to me lately, but I know that's to be expected after 6 months of continuous chemotherapy. I am glad that even though you didn't have a pcR that adjuvant AC got you to NED! Beesy is right though, AC after everything you had already done must have been a rough ride. I am supposed to start 6 weeks of 5 times weekly radiation soon after my BMX next month, and right now I can't even see how that's possible considering how exhausted I am already! Ah well, one thing at a time.
Congrats DogMom on finishing out your year of Herceptin! Is it a strange feeling to be done with active treatment? Cancer occupies so much of my headspace right now that I can't even imagine what life will look like at the end of my Herceptin road. I wish I could skip these next few steps and join you there!
Thank you for the well wishes Unreal. I have seen you and Beesy and Dogmom and MinusTwo on many of the other threads that I have haunted, so it's great to see you all here. Well, if we have to be here anyway that is.
And Henrietta, thank you again for coming back to share your story with me. It truly means a lot to me that you took the time to tell me that this diagnosis isn't the end of the world.
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I just finished TCHP on May 28th and will have a BMX on June 25th, followed by radiation and continue with HP until February 2021. I'm so grateful for all the questions, answers and encouragement. You ladies are inspirational and I am so grateful to have found this website and all of your posts. Thank you so much for being so transparent and sharing your journeys.
Any tips for essential items needed before BMX? I'm trying to get prepared as much as possible.
Has anyone experienced tearing eyes? My MO said it was a SE and she could send me to an eye doctor where they could put in stents or cut my ducts, but that sounds awful. I was wondering if just massaging the tear ducts will help. Has anyone tried that with success?
Thanks again for all of your posts and encouragement.
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Glad my post could help out some! Kamara, I have had some GI issues, but they’ve leveled off over time. Imodium is my friend. also can’t digest dairy great anymore or eat spicy food, but it’s hard to tell if that’s from any of the treatments or would have happened anyway. My oncologist always reminds me that I’m getting older, so some things are that.
I do have lactose intolerance in my family. 0 -
Hi Mheibel!
My BMX is scheduled a few weeks after yours so I don't have any wisdom there. I am however the practice manager for a private Optometry clinic. And my eyes ran constantly also until I started taking a Claritin every day. It took a week or so to work, but I am fine now as long as I remember to take it every day.
The "stents" your MO mentioned are called punctal plugs. They are tiny and painless, and it takes the doctor seconds to put them in. Some are made of collagen and meant to dissolve in time. I don't know that cutting your ducts would be the best solution at this point though.
That's my two cents, but you might try the chemo boards. There is a thread there dedicated to side effects. Good luck!
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Thanks Henrietta, it's good to know that SE calms down a bit with time. I also am friendly with Imodium, and I have an rx one that I can alternate if I need to. Just dislike taking more meds than I have to, you know?
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