TRIPLE POSITIVE GROUP
Comments
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Regarding hair - it's the same with me. I had long hair my whole life, even down to my knees for some time, but mostly waist lenght. I had them cut short both times I gave birth due to excessive hair loss. I heard from everybody how good I look with short hair... This year I almost got them down to my waist again, but then this crao happened... I had them cut short a week after my diagnosis, before anybody knew, and people at work and everywhere were constantly complimenting how good I look. Well, I couldn't be happy in those terrible weeks after the dx, but I guess I will also keep my hair short in future. After they start growing, that is. Right now the shedding started - I get handfuls of hair each time I comb them. I will wait a day or two and buzz it. crap. I don't want to! But have to admit, that the wig I bought looks even better than my hair, so I guess I may receive some more compliments when I wear it.
Hapa, CoachVicky, HomemadeSalsa, Denni - thanks very much for your input regarding mastectomies. I have some more thinking to do, and then some more again. I really was disapointed with my BS, even when he is one of the best in my country. He was not able to listen to me, my wishes and my fears. So I think I have to choose somewhere else, but then comes the problem with travelling and my small kids. Oh well, there's still some time, need to get chemo behind me first. Just got my 2nd AC yesterday and am feeling quite well, even preparwd the pool (smallish inflatable one) for the kids and am sitting in the shade outside with them splashing around.
LTWJ - congrats to your last Herceptin! yay!
Keepmovin - congrats to a goog operation and esp. the clear nodes. I'm not able to help with an opinion about your treatment, maybe looking at people's signatures with similar stats may help...
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Homemadesalsa, my last rad is next Thursday too! Maybe we should compare notes later today about what our doctors said!
Congrats to you as well - we can do this! -
hi ladies!
Had my surgeon apt. today
Holding off on surgery at least for now. Going ahead with hormone therapy and radiation. Redoing MRI in 6-8 weeks. If there's any concern on the repeat MRI we would need to re-evaluate, but right now it looks ok to stick with what I've already done. There were no black and white answers, so I pray I made the right choice. Thank you all again so much for
Your prayers and love. ❤️
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Homemadesalsa, my MO decided on Arimidex. I will start it next week after bloodwork comes back. I've been in menopause for two years but he wants to make sure on all the numbers. I know this drug causes issues for many so we'll see how it goes!
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ColleenS - Good! There is a plan, and they are keeping a close eye on you. That all sounds very good. I wish I had some words of wisdom to offer (surprisingly, they don't give you a book of those words when you hit 60. I think that it is very shortsighted on someone's part), but I am sending you gentle hugs. I know this is scary, but I think hormone therapy sounds like a very good plan for your situation.
Best wishes to all of my Triple P sisters. Hugs to you all.
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Tess thank you for your encouragement!! Wouldnt a book of wisdom be lovely.
~hugs~ -
keepmoving - If you are triple positive you will at minimum get taxol and herceptin. After taxol done (usually 12 sessions), you will start on taxmophillin (not spelled right) or an AI if you are post menopausal (or have menopause induced). I wrote a long "what to ask your MO" list in mid-June. You should be able to access it. Ask if you have other questions, either on this forum or pm me.
My MO is also VERY big on AI's even though I am already over 70. I did arimedix first and have had fewer SE's on letrozole. I was able to drop the 5 lbs. I gained on chemo but haven't been able to much more than that although I must admit I'm not very motivated to make major diet changes. Have upped my exercising.
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TLD thanks for the info. My MO mostly wanted to discuss my Dexa results, which were borderline osteopenic. He wants me to make sure I get 100% of the RDA of calcium, and he suggested Tums, which is a nice turn of events as a cheap non-prescription fix. In 6 weeks (after another HP cycle) I'll start an AI, but we didn't discuss which one. T score of -.5, Z score of .8
6 more rads to go! Yesterday I got prepped for the 5 boost sessions, and they drew a polygon around the scar as guidance. Little did I know until a glance in the mirror that the scar (a big Y) created an outline of a cock and balls on my chest. Heehee did I give my lovely Mormon rad tech boys a hard time about that! Anyone else have that issue? Most entertaining!
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I need someone to talk me down from my ledge. I had a double mastectomy in 2014 with implants in 2015. Across the scar line and around it I feel lumps and bumps. Of course there has been tugging and pulling across the breast since surgery. An MRI with oncologist #3 (love those HMOs) showed something on the medial scar line but birads 2 they thought it was begin. Onc said if I was ever nervous or felt it was growing, which I do now!, he would biopsy. Of course I with onc #4 who couldn't identify me in a line up. I'm going to call in the morning and see if my late September appointment can be moved up. Not thinking so...but here's my question.
Would an ultrasound show if there is a scar mass or a cancer mass (to biopsy)? As I have saline implants I can't imagine a mammogram is the way to go.
Normally I avoid the ER at all costs but the tugging is getting worse and the feel of the lump (larger than 2 cm) is creating a lot of anxiety within me. Again, if I had onco 1-3 I think I could get it and get biopsied but I'm not sure about #4. PCP things that my fatigue is still chemo related. I don't. His PA doesn't either...but she went on maternity leave.
Thoughts?
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jumpship - I would get an MRI, that has been my MO's go-to for this type of thing. I had a bi-laterally abnormal routine PET and that is the follow up he wanted but I had an expander in (for the third time) so couldn't do MRI. I was already scheduled for surgery to exchange the expander and downsize the other implant the following week so they did a look see at that point, a bunch of biopsies, and removed a 3cm mass at the site of my original cancer which turned out to be a suture granuloma. I know others have had fat necrosis across reconstruction - hoping that this is something like that for you, but I totally get your concern - it is scary until you have an answer, and the revolving door of MOs for you is not helpful. Is there any way you can contact your original BS or PS and get them to order an MRI for you to speed this process?
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Okay, so I'm done with TCHP and my MO has put me on just herceptin for the remainder of the year. Is this normal? I was expecting to get perjeta as well. I'm generally for less treatment instead of more but I'm not sure I'm entirely comfortable with this. I tolerated chemo very well overall and did not have problems with diarrhea, so I see no reason to stop the perjeta. The nurse said if I have residual disease at surgery he may put me back on perjeta, but he usually does just herceptin to start.
Colleen - I'm wondering if you maybe aren't really Her2+? Or maybe just one of those who doesn't respond to herceptin. Either way, hormone therapy seems like a good next step and doing it before surgery will allow you to see if it is effective or not.
Homemadesalsa - I love your sense of humor. I always say "you can only be young once, but you can be immature forever!"
Jumpship - sorry I don't have any advice for you, sending gentle hugs.
Sorry everyone I skipped over. I'm drive-by posting from work and have to go to a meeting...
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1.5cm and negative nodes
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homemadesalsa - I didn’t have rads so can’t testify, but LOL about your post - love it!
beachmom - you fall squarely into the criteria for the TH regimen, I would strongly consider it since you do and because there is less risk of permanent hair loss. It is possible that the other MO has not used TH as a stand-alone single agent regimen because it is a newer application for HER2+ patients and maybe is just used to using TCH. I would ask the TCH once to justify that choice. Here is the 7 year follow to the study for TH only:
http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.511
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Hapa I have wondered as well if I really am! Although my score for HER2+ was 3+ which is the highest possible...this is what made my onc think it was no mistake I was HER2+. I’m still going to ask again though.
Homemadesalsa thanks for the laugh
Jumpship I am praying for answers and good news for you soon.
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Reg. PERJETA - I was wondering, who gets it and who doesn't? I see in many signatures in this board, that people got it even for smaller tumor than mine was... Mine was 21mm with high Ki67. I asked my MO about it and she said that Perjeta is used for neo-adjuvant treatment. well, I don't get it - if it helps in neo-adjuvant, why not in adjuvant? Any thoughts please?
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Hi jaboo. We have a similar diagnosis and I am getting perjeta for a year. We didn't find out about the HER2 S status until after surgery. There was a study done recently I think that shows it does help after surgery. The problem may be cost and insurance, but I have had no issue with that. I would push for it! We are both in our 30s and we need all we can get to keep this thing away for good!
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Ig10, yes, I see our dx is very similar. My 1 positive node had just micromets. Yes, the problem here may be the cost, the system here is different and I think there are some issues with Perjeta in my country, in using it for adjuvant treatment.
Should you have a link to the study, it would hape. Thank you.
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Mine was also micromets. Here is the link:
https://www.breastcancer.org/research-news/herceptin-w-perjeta-better-than-alone-for-some
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Ig10, thank you. I had a look at some articles about this study (APHINITY) in my language, regarding the situation in my country. I think I will print those and talk to my MO. I hope I get some good answers, actually I don't want to go for a second opinion now, I like my MO. But if I see any difficulties or don't feel ok with the answers, I will have to go ask somewhere else too....
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Jaboo, I was initially not going to get perjeta when they thought I was stage one. My onc said it was for more advanced cases. As soon as they found out it was in my nodes and I was stage two, she added perjeta. I understand where you’re coming from, I want to take everything I can to prevent spread and recurrence
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Hi jaboo,
I am getting a year of Herceptin + Perjeta. At the beginning I was clinically diagnosed (i.e. based on palpation and biopsies) Stage IIB, with 3.5 cm tumor and two nodes involved before chemo. After neoadjuvant chemo, surgery revealed that I still had two nodes involved, with macro metastasis and extra-capsular extension. So maybe the node involvement after neoadjuvant chemo is the key here?
Your one node with micro metastasis, was that after neo-adjuvant treatment? or before?
LaughingGull
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Colleen - my original biopsy was Her2 negative (+1) on IHC. My second one was Her2 equivocal (+2) on IHC. It was Her2 positive by FISH testing. I seem to have responded to Herceptin very well. And being Her2 positive explains the aggressiveness of my cancer (multicentric, spread to lymph nodes, high Ki-67, high grade). Bottom line is that I don't really trust IHC testing, it is very subjective. It's basically a pathologist staining a slide of cancer cells from your biopsy and comparing them up to a key and pronouncing it 0, 1, 2, or 3. However, I don't see the point of you getting a FISH test now since regardless of how it comes out, you already tried herceptin and didn't respond so your Her2 status is kind of moot from a treatment perspective. It is what it is, I guess.
JaBoo - I think if you just have micrometastasis you are still considered node negative.
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Coleen, LaughingGull, I was initially diagnosed (ultrasound, mammo + biopsy) as stage I with 15mm tumor, node negative, her2 2+, grade 2. So I went directly for lumpectomy with sentinel node removal. pathology after the operation showed micromets in one node (of 3 removed) and to make it worse showed grade 3 and her2 3+. and 21mm tumor.
Coleen, it's interesting you got neo-adjuvant chemo with your original clinical diagnosis as stage I... almost the same as me, but they said operation first for me. And yes, you are right, I want to throw everything at it, like kitchen sink with its cabinet...
LaughinGull, and what happenes when they found your nodes involved after neo-adj. chemo? do you get more chemo, like adjuvant? this is a general question I was meaning to ask, as I don't understand this... I'm thinking going for bmx after my chemo, but I really don't know what happens when they find something left...(close margins).
hapa, you think micromets are node negative? this could be an argument against perjeta in my case...
great for you all, Coleen, LaughingGulk, Hapa - that you are getting Perjeta! I read a whole lot today and it really gives you precious percentages!
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Happy Friday everyone! Regarding Perjeta..I participated in a clinical trial so I received Herceptin and Perjeta for one year per the trial criteria. It seems Perjeta is not "standard of care" like chemo and Herceptin so maybe there is an insurance element as to who gets it and who doesn't?
Jumpship - I am praying you find answers and peace soon.
Jaboo - hope you find a BS soon who will provide the support and plan you are looking for. Being at peace and having a strong sense of trust in your medical team is so very important to healing.
Keepmoving - great news on your clear nodes! My diagnosis was different than yours and I participated in a clinical trial so I don't have specific suggestions but a few general questions:
Homemade - LOL thanks for the humor! Congrats to you and TLD on achieving this significant milestone in your treatment. While most of us have side effects from the AI, my MO and I think most others, view them as an important part of our regimen to prevent recurrence. I will stay on the AI as long as my MO tells me to and I have learned to manage the side effects well enough that I feel I have quality of life. I am appreciative in the integrated approach my MO, nutritionist and naturopath have taken to ensure my side effects are tolerable. Telling myself that the AI is keeping the cancer away also helps me put everything into perspective so I don't dwell on the side effects too much.
Colleen - sounds like your medical team has suggested a good plan and they will be monitoring you closely for changes. That's a best case scenario in my book! The hormone therapy will provide an added level of comfort as well.
Wishing all of you fine ladies a wonderful weekend. Hugs and peace ;-) -
Happy Saturday eveybody! Have you ever heard of this? I finally met with the MO for the first time (who I really liked) yesterday afternoon. He told me he was asking Pathology to test a specimen from the surgery for HER+. When Pathology at this center (not same place as where biopsy was done) reviewed the report from the biopsy they changed grade from 3 to 2. This makes MO think that the cancer may not be HER2+. Original report after biopsy was HER2+ Amplified (FISH). Of course, I know this is potentially a game-changer as far as treatment plan is concerned. If not HER2+ no Taxol or Herceptin, only Rads and AI. I don't know enough about how tumors are graded and how HER2+ is determined to understand how these findings can change. I'm hopeful, confused and still really worried at the same time. No HER2+ would be great news. But confused how two different labs/pathologists could come to such different conclusions. Wondering if I should get another opinion using a specimen from the lumpectomy. Consistent answers, whatever they would be, would make me feel a lot better. Putting this out there to see if anyone else has been on this type of crazy roller coaster?
Thanks in advance. The support here is amazing and I hope to be just that to someone in the future. Special thanks to taco1946 for her extra help!
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keepmovin I did not have those issues but when I got the call from my BS that I was HER2+ after FISH, I asked him if he was sure and he said, “Oh yes.” Before a third sample maybe another conversation with your MO to express your concerns/gain some comfort about your final dx?
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keepmovin,
It's always a good idea to make sure that you're really HER2+ before beginning on the lengthy regimen for this kind of breast cancer. That said, plenty of HER2+ breast cancer is Grade 2. But, by all means, do try to find some consistent results.
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keepmovin - FISH is the more sensitive of the testing platforms used for Her2 assessment. If you had an amplified result, that is pretty definitive, IMHO more so than grade. Grade is more subjective. Grade is determined by three parameters that each receive a score from 1-3. The three scores are added together to determine grade. 3-5 is grade 1, 6-7 is grade 2, and 8-9 is grade 3. The three components that are scored are 1) tubule formation, or how well the cells are trying to form normal glands - a score of 1 is >75% normal looking, a score of 2 is 10-75% looking normal, and a score of three is <10% looking normal. 2) is nuclear pleomorphism or how normal the cells look under the microscope, or uniform looking cells 1 point, moderate variation is 2 points, and marked variation is 3 points. 3) is mitotic count and how rapidly the cells are reproducing - the parameters are dependent on which power microscope is being used. Essentially is is a rate of a single amount for 1 point, doubled for 2 points, and tripled is 3 points. So, you can see that a difference of 1 point can move you from grade 3 to grade 2, and the assessments are made by humans in terms of how things look. Also, tumors are not homogenous so grade can be different in different parts of the tumor.
In terms of the Perjeta conversation it was initially approved for tumors 2cm or node positives, given only neoadjuvently with Herceptin and a taxane - preferably as an addition to a TCH regimen. Perjeta works synergystically with Herceptin as a complementary drug, binding to additional areas. This FDA approval happened in Sept of 2013, and was approved this way to monitor efficacy as this drug was fast-tracked with less data than is usually required because the early reports were that it was beneficial. In January of 2018 Perjeta was approved adjuvently based on the APHINITY trial, which showed some promise for node positives, but less of a benefit for node negatives and those with negative hormonal receptors but who are Her2+. I think there was hope that Perjeta would show a greater benefit for those who did not have as complete an anticipated pathological response as projected, versus potential for cardiac and digestive side effects. So, to me, decent pathological results from neoadjuvent treatment, the determination of risk going forward based on clinical features, the less than stellar results from APHINITY, coupled with the recent approval for adjuvant use of Perjeta are all factors that go into a decision oncology decisions about using it adjuvently.
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SpecialK thanks for that good information. I see you are from Tampa. I’m in Sarasota and had surgery and saw MO at Moffitt. Great people. Just hope MO and pathologist get it right.
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keepmovin - we have a great group of BCO ladies here in Tampa that get together every few months, we would love to have you join us. We have a couple of ladies from the Sarasota/Bradenton area. If you need chemo/targeted therapy will you travel up to Tampa for that or find an oncologist locally
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