ER-, PR-, Her2+ Roll call
Comments
-
Yup - like Beesy, this thread is on my favorites and I'll be happy to answer questions if possible.
Sounds like you're just getting started with chemo. I would recommend joining one of the chemo threads with people who are in the middle of treatment. Look for Chemo Dec 2020, but I'd also recommend reading the November thread. I found lots of support & information it these threads.
0 -
I'm not as knowledgeable as Beesy and MinusTwo (or others) but I'll be happy to give my two cents as well.
I agree with checking out the month thread you start your Taxol/Herceptin treatment. There's alsoa weekly Taxol thread in the chemo section that was really usedul while I was getting it. Helps to have others going through some of the same things you are.
0 -
Thank you so much! Just being able to troll these forums has helped quite a bit. Our hospital was hit by a cyberattack in October, and it canceled some infusions (not mine, since I haven't yet started), and has a lot of departments backed up. Trying to get an echocardiogram scheduled prior to starting Herceptin nearly broke me. On top of the biopsy anxiety resulting in diagnosis and surgical biopsy anxiety confirming staging, and anxiety relating to starting chemo, the scheduling and potential delays has been more than I can bear. Everything has finally aligned and I'm ready to get going and get the next 12 weeks behind me. I gathered we were maybe 7% of those diagnosed, but I'd buy 4% as well. My IDC has medullary features, which is yet another sub-subtype from what I understand.
0 -
From extensive trolling, I have favorited this group, the December 2020 group, and the weekly Taxol group, so it sounds like I am following the right threads, thank you all for the welcome. My tumor was left breast, 1:00 so undiagnosed intra-mammary nodal invasion is something that is still lurking in the back of my mind, even though pathology interpreted microscopic foci of tumor embedded within lymphocytic infiltrates as micro satellite nodules and not intra-mammary nodal based on their structures. I need to let go of that worry and just hope that staging remains as is.
0 -
Mochi - yup, you DO need to let go of the worry, but that's a very difficult task. Just find something you enjoy doing that you can look forward to every day. And make that a priority. Of course that's a more difficult order now too because of Covid. Sigh.
I'm surprised at you didn't have chemo first which is the usual pattern for HER2+. And because you had a lumpectomy, I assume you have radiation coming? I did have chemo first but after surgery I had my rads while I took Herceptin for the rest of the year.
0 -
MinusTwo, I think maybe my treatment sequence is because my tumor was 0.9cm? Surgery was a relative breeze as well.
My other fear that is less scary than intra-mammary node invasion is BRCA positive status, and then will need to face the music regarding more extensive surgery. I tested negative in 2007, which I tecbecause of familial ovarian and breast cancers. Breast surgeon and MO both suggest a retest because the tests are better now.
0 -
MochiPie- I also had surgery first. My BS made me have an MRI to get a more accurate idea of the size. Since it was less than 1.6 that tipped it to surgery first. She said that she felt she could get clean margins without going with chemo to shrink it. And it worked well. Good luck with your chemo
0 -
My DCIS was throughout the breast. They did not even find the stage one tumor until pathology analyzed the tissue. The DCIS was fast-moving, probably because it was Her2+.
0 -
hello every one
My mother hits 10 years last month and she is doing really great. When I started this thread I just cant imagine this moment hope you all hit 10 years and so o
0 -
Nevo - thanks for posting. Always great to hear a success story.
0 -
Researching HER2 and found this group. I’ve been working my way through treatment, and now have some questions specific to HER2... I’m stuck at a what now.
I finished TCHP the end of October. I just had a BMX with tissue expander placement 12 days ago.
My pathology report just showed up in my patient portal, and I don’t have an apt with my surgeon until next week, so I wanted to see where other HER2+ paths have taken you...
My report said that my lymph nodes were clear, but I did not have a pcr...there is still residual idc, 1.1cm... Margins are clear.
Just curious as to what others next step for treatment was...with a similar situation... Radiation along with targeted therapy? (Which was what my oncologist originally told me prior to chemo...he did mention there was a chance I would not need radiation, but did not indicate what circumstances would warrant this...)
Comparing this pathology report, to my previous one from biopsy, it appears that my tumor didn’t shrink much. It also was er/pr negative....and is showing er 1-2% weak, low positive. Is this something to be concerned about?
0 -
this probably isn't much help, but my oncologist told me when I first started TCHP that if I didn't get PCR from that treatment I would start Kadclya as the next treatment. There is a Kadclya forum here that I read through and kept track of just to have an idea of what that treatment might be like.
it also probably makes a big difference that you had a mastectomy bs lumpectomy. I have no idea of they would move you to Kadclya since you had the mastectomy.
0 -
My recurrence as IDC was ER/PR negative Her 2+ and I did 6 rounds of TCHP, then surgery without pCR. My MO recommended that I do 4 rounds of AC before continuing with radiation & Herceptin. Kadclya was new then but he recommended we hold that in reserve in case needed down the road and complete the 17 cycles of Herceptin. The AC on top of everything else was difficult but I made 3 of the 4 rounds. I stopped the Perjeta after surgery because of the 'big D'.
Going on 8 years of NED.
0 -
Hello, hopping in here a bit late. Two infusions of H&P left and my MO mentioned she's going to talk to me about going on Nerlynx - which surprised me a bit since I had BMX, no node involvement and had a pCR. So now I'm poking around in other HER2+ forums.
Good to see posts like Nevo84's recent on her mom reaching 10 years!
0 -
mic, I think it is just a required talk. My onco said we are going to have a talk about Nerlynx. We had the talk, and I said I don't think it is necessary. He was fine with that.
0 -
micdpowers,
I had a BMX and pCR but did a year of Nerlynx. Was it a walk in the park? I can't lie and say yes, but nothing remotely like chemo. Am I glad I did it? Yes. There's a thread that was pretty active this last year where you can read more: Nerlynx starting May 2019.
0 -
Hi Beesy - yes, I noticed that your info is similar to mine - so I went back in that thread to see why you went on Nerlynx. Would you say that your MO recommended it or, rather, that you wanted to try it and he was on board with that? I have a sense that my MO is going to recommend it because she said I should not get my port out right away because it might prove useful if I start Nerlynx. Depending on what she can tell me regarding % benefit, it's going to be a hard decision. I declined radiation because they couldn't tell me the potential benefits made the side-effects worth it. But I sure as $&*! don't want this coming back....
0 -
micdpowers,
I don't see why you would need the port because Nerlynx is an oral medication, but maybe I'm not understanding some part of your situation. When my tumor was biopsied it was 1.5 x 1 x 1 cm (ultrasound) and two weeks later, an MRI showed it as 7 x 2 x 3.4 cm, and it had invaded my nipple. The invasion of the skin was what made my case more complicated than it appeared to be at first. What persuaded me to give it a try was the fact that HER2+ cancers like to go to the brain and Nerlynx would be the only drug I would have taken that crosses the blood brain barrier. I can't remember whether my MO mentioned it to me first or whether I did. For me it was worth saying I did all I could.
0 -
Beesy - Wowza! That is some impressively scary growth pace! I'd have that lurking in my mind too. Thanks for sharing your reasoning. Lurking in my mind is a PALB2 genetic mutation - which is no BRCA, but is something.
She said to leave port in in case I need supportive meds or continued bloodwork due to side effects. Electrolytes. Something like that.
I think my MO sees me as young (relatively - 46), healthy, and able to handle it - and therefore she wants me to use every preventative measure at my disposal. I had moderate D on TCHP (able to control with a minimal amount of Immodium) and still have some on HP (I pooped my pants a little while on a run the other day - let's just say the last 1/4 mile of my jog was more of a sprint and my teenage daughter who accompanied me will probably use it to mortify me in the future). The D worries me a little, but the potential for mouth sores more. I've always been prone to canker sores, got 15-20 my first infusion, and still get them just on HP if I don't have ice in my mouth throughout the infusion. That's what would most likely make me quit.
0 -
This is my first post but here goes. I also have been diagnosed in Oct 2020 and had to have 2 ops as my margins were .33 from the edge however thankfully the second lot of tissue results were clear. I have just had one lot of chemo with 5 to go and will do as suggested by another person here and follow the chemo thread as I could really find it useful. I think I'm coping not so bad but don't know if frantically looking up info at 3 in the morning is a great sign!!!!! My torment is that the recent Nice and SMC guidelines have changed and i wont be offered pertuzumab which was the initial plan. This is causing me great distress as her2pos, Hr- is really high risk of reoccurance (will be getting herceptin thankfully) and there isnt a great deal else at the moment that can help treat it at this initial stage. Is anyone else out there in this position?
0 -
Hi Carlo! Welcome to this community. I hope that you find it as informative, helpful, and kind as I have! May I suggest you go into your profile and fill out your dx, treatments etc...that way everyone on here can compare and be of more help!
I had 6 rounds of TCHP chemo, followed by a bmx. I had residual cancer so will be having 14 rounds of kadcyla, instead of the additional 6 rounds of herceptin. I also will do 25 radiation treatments because my margins were close...as well as other factors including my age, grade 3 tumor, multi focal, aggressiveness of the cancer, etc.
0 -
Thanks mtspacekace Id filled out the info but hadn't changed the settings. It is useful when you see different diagnosis and treatments. I'm down to have 19 cycles of radiation after targeted therapy as had DCIS to 16mm from the 9mm invasive. That little beast was making its merry way elsewhere!! I also had a biopsy on R side due to shading but came back benign but it was deep in chest wall so will have to think how to keep a tight eye on that also. Good luck with the Kadcyla and hope it hasnt many side effects for you. There are so many variations of treatments Im struck by how long all of the treatments take.
0 -
Hi all
I have a reoccurence after almost 13 years, went for a routine mammogram and got a all the next day.
It turns out the reoccurence is in the same breast and same type. I don't know the treatment plan yet as I will finish my scans and meet with surgeon and Oncologist on February 10th.
From what I was told briefly, looks like chemo and surgery again. I have read that most likely I will need a mastectomy because I had radiation the last time, and they don't usually do radiation again on the same breast
The waiting and not knowing is the worst. I was told I could choose bilateral, just not sure what to do.
My first chemo was so hard on me (I had a cocktail of Adriamycin and Cyclophosphamade and rads at the same time). Taxol gave me neuropathy in my fingers and toes. Then a year of Herceptin. That was the Protocol in Israel where I lived.
I hear that this time they will most likely do surgery first followed by chemo.
I would love to hear from others in a similar position and how things went and any suggestions.
Prayers for all.
0 -
Hi everyone,
I am back again, after 13 years cancer free, I never thought I would have to be going through this again.
Originally diagnosed in 2006 (er/pr- and Her2 very positive), I had a lumpectomy, radiation together with A/C cocktail, Taxol and Herceptin for a year, treatment completed in May 2008.
My new pathology report is same breast and same er/pr- and Her2+, I am going on February 9th for bone scan and CT scan, meeting with radiation Oncologist and surgeon. From the 1st conversation I had with the doctor at the hospital, it seemed I will most likely require surgery and chemo. After reading through information on this site, it seems that most likely I can't have radiation since I have had it previously on this breast. However the doctor said I would speak to the radiation Oncologist to discuss this.
One of the options that we discussed was lumpectomy versus masectomy (although at this point I don't know if lumpectomy is an option if I can't do rads). I am scared of having a masectomy due to it being a more invasive surgery and longer recovery time. My lumpectomy + central biopsy node dissection left me in pain in left side and army even all these years longer (still can't fully raise my arm).
I would love to hear from others:
1) Should I do a masectomy and I guess would I be wise to do a bi-lateral?
2) How bad was the surgery and recovery time for you.
3) Would I most likely do Herceptin again?
4) I have heard that I can't do the same A/C cocktail, what would be the cocktail most likely this time?
5) I have also heard that there is a follow up drug now after Herceptin, does anyone know about this.
Lots of questions, but am very anxious and want to be as well informed as possible before I make all my decisions.
Thanks and hugs, love and prayers to all of you.
0 -
DontWant - you got lots of great information on your other site. Particularly this from Beesie copied below:
Since you had rads previously, a MX will be recommended this time, as rads can't be done twice to the same area and it would not be advisable to have a lumpectomy alone, without rads.
And ER-/PR- and HER2+ does mean that chemo will be recommended (unless the tumor is extremely tiny), possibly before surgery depending on the estimated size of the tumor. Do you have an appointment with an oncologist? With this hormone status, you need to speak to an MO prior to surgeryThe decision about bi-lateral must be yours. I did it and was glad but others prefer to keep one breast. I did TCHP for my HER2+ chemo. Then AC for a back up after surgery Yes, you'll do Herceptin and likely Perjeta - although there are even newer drugs now.
Please do go to "my profile" and enter your diagnoses and treatments to date. You can update after you meet with your docs. As Beesie mentions, meet with an MO now before you go any further. That's who usually coordinates when you need multiple docs.
0 -
Hi,
My last round I took Taxol (I believe it is the same as Taxotere) and had to stop because of Neuropathy, did you have any issues with this?
0 -
Dont Want - how far are you into treatment? Again -please post to "my profile"]
Taxol is not exactly the same Taxoere. I have heard Taxol is Taxotere light. What did your MO say?
I had nephropathy by # 4 of Taxotere. I opted to continue.
0 -
DontWant.....My first breast cancer diagnosis was in 2015, I had ER+/PR+/Her2- IDC in my right breast. Node negative, Stage 1A. I had a lumpectomy, followed by radiation and Tamoxifen.
In 2020, I was diagnosed with breast cancer again, this time in the left breast. IDC ER-/PR-/Her2+, node negative, Stage 1A. Like you, I did not want a mastectomy because of how invasive it is and how long the recovery was going to take. But, this time I knew I really didn't have any other option. Breast cancer had now touched both breasts, it was time for them to go.
I had a bilateral mastectomy with immediate DIEP flap reconstruction in August. I was terrified! A long, 8+ hour surgery and who knew how long of a recovery. I was working full-time, but went on short term disability for 8 weeks.
My plastic surgeon gave me a pain block once the reconstruction was complete, so I woke up with absolutely no pain. It was truly amazing! My plastic surgeon requires DIEP flap patients to spend the first night after surgery in the ICU. What a difference that made! Those nurses were so on top of my pain that when the block wore off, all I honestly felt was just some discomfort and nothing more. I went home after 3 days in the hospital.
The hardest part of recovery was the abdominal incision/tummy tuck. I couldn't walk up straight because the skin had been so stretched, so I had to walk slightly bent over for a few weeks. Getting up out of bed/chairs was also a little tricky because of being sore.....but not impossible because no muscles were cut.
All in all, recovery was MUCH easier than I had thought it would be. Yes, it's long and you need to take things slow.....but it is VERY doable! I promise. (And I even had some complications/infections during my recovery, but it still was not that horrible.) I returned to work the first week in October. I did part-time for the first week, to get used to being back....but after that, returned to full time. Still full time today!
I am very glad that I made the decision to have a bilateral mastectomy. No regrets!0 -
Hello-- I'm new here and am checking in! I'm currently waiting on getting chemo. Have an appointment with oncologist this Thursday to give him my final decision on going through with it.
Recommended regimen is TCHP every 3 weeks for 6 cycles, with HP for one year.
I already had surgery for DCIS January 12, 2021-- a mastectomy of right breast with 4 lymph nodes removed. Clear margins, nodes all clear, BUT they found a 3.5 cm Invasive Tumor in my breast AFTER surgery. I'm in my 5th week of recovery and feel great, but am now facing chemo upon discovery of the invasive tumor.
Is TCHP a normal regimen for me since i've already had surgery? I'm reading some people had this same regimen but it was before surgery..Also, my oncologist gave me information on a clinical study he is doing and upon reading just the first paragraph, the study says it's for women who have NOT had surgery yet. It makes me question if the oncologist knew who he was talking to at the time of my appointment.. Thinking of calling today but not sure what to say--I don't want to offend him by asking "by the way did you realize i already had surgery when you saw me last week and gave me info on recommended regimens?"
Edit to my post: I just read my Notes that get posted on my patient portal and it says they made an "error in offering me the clinical study", although nobody has been in contact with me to tell me so. Strange huh? Anyways upon reading further, it seems they are aware of my surgery and the TCHP is a regimen that is normally offered to patients like me. So my questions have been answered.. Still look forward to continuing on this forum for valuable information!
0 -
Muffet — they normally give TCHP chemo before surgery because they usually identify HER2+ before surgery. In some cases, like with yours, the HER2+ nature of your cancer was only identified after surgery. When that happens, they then recommend TCHP chemo because HEr2+ cancers are aggressive and they want to make sure they can kill any random cells that may have escaped from the original tumor.
TCHP isn’t a walk in the park, but it’s doable.
0
