ER-, PR-, Her2+ Roll call
Comments
-
I also chose lumpectomy. Because I'm at my lifetime limit of adriamycin part of my reasoning was keeping mastectomy on the back burner in case of recurrence. I know logically that makes no sense but cie la vie. Sometimes logic has no place.
0 -
Hhuey,
So, what happened? How did you handle Herceptin's debilitating side effects? Are you sure your symptoms were due to the Herceptin? Were you receiving a bone marrow stimulant? I hope you found a solution and I hope you are feeling better.
Giveityourall
0 -
Sassa, Congratulations!! Glad things are going well. Spread the positivity.
Giveityoural
0 -
hit 13 years this month. erpr neg, her2 pos ,stage IIIC
blessedly well!
0 -
Thank you for coming back to post, Linda! I hold on to your story when I was diagnosed, it really helped me go through that dark period.
0 -
IKC - Linda: Hooray. Congrats. Thanks. I'm 4 years out from my recurrence diagnosis & treatment. I agree - I held on because of stories from women before me who came back & checked in.
0 -
Minus two,
Well, it appears that u have turned it around and are now plus four. No matter what the future holds... we need to know that science is advancing quickly and thus, we confidently can expect longer survival rates and a better quality of life. I thank all of my sisters, like you, who have undergone my same journey, but have inserted street signs and arrows to insure my chosen path is a little smoother and a little easier. In turn, like you, I promise to insert the necessary signage so that future generations' travel times and required endurance are reduced. Here's to better tomorrows.
Giveityourall - just completed round four of six TCHP treatments - surgery and radiation, and the infusion of the Herceptin and Perjeta twins lie ahead of me
0 -
Linda, I am thankful for your health and willingness to communicate your story.
Giveityourall
0 -
Anyone else ready the new study just published.
First results from the PERSEPHONE trial suggest that giving Herceptin for 6 months after surgery and chemotherapy offers the same decrease in recurrence risk as giving it for 1 year.
I'm definitely discussing this with my MO at next appt. Family history of heart issues so saving 6 months of Perception could be good option for me. I was also just marginally HER2+ on FISH.
Today is Round #3 TCH so MO and I have a little time to make this decision.
0 -
I was so happy to see this thread active. Sometimes it feels lonely (and scary) to be ER-/Her2+. Wishing everyone a good summer!
0 -
Yes, Persephone in interesting.
Also the new guidelines about chemo. Unfortunately the recommendations are only for ER/PR+ people who are HER2-. Agree Datny - we are hanging out there.
GiveIt - did you stop TCHP after four infusions? In many ways I wish I'd stopped then - when the neuropathy first raised it's ugly head. But after discussing it with my MO and realizing there were no 'magic 5 year pills' as a hormone negative patient (and since it was a recurrence), I went ahead. My choice - my dead feet - and you can't 2nd guess your choices.
0 -
Minustwo,
On May 29, 2018, I had my fourth chemo treatment along with my neoadjuvant therapy (TCHP) - taxotere, carboplatin, Herceptin, and Perjeta. On that day, I began contemplating the drugs' true effects. In addition, I began to wonder why there were six treatments - each at three-week intervals. What is magical about six? What studies prove six treatments are key?
I began my quest to find out. Supposedly, the Herceptin and Perjeta duo annihilate HER2. In addition, TCHP is supposed to result in a pathological complete response (pCR). I wonder how many Breastcancer.org community members achieved pCR with TCHP. It would be interesting to find out. My TCHP cocktail, which is administered straight up and not on the rocks, has caused my 2.2 cm x 2.2 cm x 1.2 cm to shrink. After three thrilling chemo sessions, the ultrasound measured the tumor at 1.9 cm x 1.5 cm x 0.9 cm. So, my tumor is decreasing, but it is not melting like the Wicked Witch of the West doused with water.
According to Force, Howie, Abbott, Bentley and Marcam, et al (2018), 30% to 40% of HER2 positive tumors are not wiped out by the TCHP cocktail (https://www.clinical-breast-cancer.com/article/S1526-8209(17)30266-5/fulltext). The authors claim the non-melting tumors appear to have a large amount of infiltrating T-cells (which is a lymphocyte - lymphocyte is a type of white blood cell).
So, if my tumor is not going to melt, then I will rely on surgery to remove the unwanted mass. However, how many chemo sessions do I require to kill any free floating cancer cells that are looking for a new home? That is not a question for you specifically. It is meant to be a thought provoking question.
Also, are post-surgery Herceptin and Perjeta treatments administered in three-week intervals over a 34-week period truly supposed to kill any pesky remaining HER2+ cells ?
Giveityourall
0 -
DATNY,
Sister, you are not alone. I am standing right next to you.
Happy summer.
Giveityourall
0 -
I was diagnosed stage 4 with a 1.5cm right breast mass. It had already spread to my liver. After 8 rounds of THP I was pCR at Surgery. H&P is easy to take and keeps me here. I am grateful for those drugs.
It is hard for early stages to work thought that question. Do you really need it? Side effects, are they really worth it? It is and you should take it as long as it is offered
0 -
GiveIt - Yes, I had 6 rounds of TCHP but I did not achieve pCR. So after surgery I was scheduled to have 4 rounds of Adriamycin/Cytoxan to mop up what was left. I could only do three AC before WBC tanked & they started talking transfusions. After first diagnosis & treatment two years earlier w/a BMX & with clean margins I obviously still had some rogue micro cells roaming around, so needless to say I was anxious to kill everything after the recurrence. You can't do Herceptin with Adriamycin because the both can damage the heart, so I went back to the H two months later - but declined the continuing Perjeta. I had gone through 9 months of constant diarrhea and 60lb weight loss - I didn't want any more of that. I had 5 rounds of rads while I was finishing off the H.\
Glad your tumor is shrinking. Hope you can get to pCR.
0 -
Magic Numbers - Reading the posts about TCH+P have me wondering so I did not qualify for P because my tumor was 1.9 and not the magic 2.0. I have no idea if TCH is making in difference because I choose to do the lumpectomy asap. More because as a previous chemo patient I knew A/C would never be offered for me and I just wanted the damn cancer out. I had clear margins and no node involvement. So now of course I'm rethinking everything. Especially when I read that patients with poor outcomes involve lymphocytes (my previous cancer was stage 4 lymphoma so my bodies loves to make extra lymphocytes - although mine were B Cell and not T cell.
Should I have pushed for Perjeta? .1cm seems like such an arbitrary number.
0 -
Thank you giveityourall, happy summer to you too and everyone else here!
I had 6 rounds of TCHP. After I finished chemo, I could still feel in my breast what I thought to be the tumors, which made me very distressed. An MRI just before surgery did not show any tumors left, but did still show the enlarged lymph node. The pathology after mastectomy said pCR. It said changes consistent with biopsy scaring but no cancer anywhere. I hope it was done correctly.
0 -
Duffyzmom,
I am not a doctor or oncology scientist. So, bare with me as I try to understand your story. The reason you did not receive Perjeta was due to a tumor measuring 1.9 cm? Interesting.
I went to Perjeta's website to research Perjeta's treatment as it relates to tumor size. According to Genentech (https://www.perjeta.com/hcp/breast-cancer/resources.html?cid=per_PS_MBPTBC0004&c=MBPTBC0004&moc=MBPTBC0004&mkwid=sqDYTesMQ-dm_pcrid_225279391880_pkw_perjeta_pmt_p&utm_source=google&utm_medium=cpc&utm_campaign=HCP+Branded+%25257C+Perjeta+%25257C+HCP+%25257C+Branded+%25257C+Perjeta.com+%25257C+BC+%25257C+per_PS_MBPTUA8016&utm_term=perjeta&gclid=EAIaIQobChMIlLaQpLbJ2wIVBghpCh2bZQF8EAMYASACEgJ3OvD_BwE&gclsrc=aw.ds&dclid=CMOU-oG3ydsCFZluwQodo3gIzg), the manufacturer of Perjeta, Duffyzmom's doctor is correct. The manufacturer lists the indications for metastatic breast cancer and early stage breast cancer. Under early stage breast cancer, it does discuss the 2 cm recommendation.
Indications:
Metastatic Breast Cancer
- PERJETA® (pertuzumab) is indicated for use in combination with Herceptin® (trastuzumab) and docetaxel for the treatment of patients with HER2-positive metastatic breast cancer (MBC) who have not received prior anti-HER2 therapy or chemotherapy for metastatic disease
Early Breast Cancer
PERJETA® (pertuzumab) is indicated for use in combination with Herceptin® (trastuzumab) and chemotherapy for
- the neoadjuvant treatment of patients with HER2-positive, locally advanced, inflammatory, or early stage breast cancer (either greater than 2 cm in diameter or node-positive) as part of a complete treatment regimen for early breast cancer (EBC)
- the adjuvant treatment of patients with HER2-positive early breast cancer (EBC) at high risk of recurrence
Duffyzmom, I do the same thing. I am always questioning. After three TCHP treatments, I had an ultrasound to determine my TCHP's effectiveness. It helped me to know the tumor's size had decreased. Although it was a diminutive decrease, it was a decrease nevertheless. In addition, the ultrasound, which is a limited viewing, showed normal lymph nodes. Of course, nothing is truly known until the good surgeon goes in and sees.
My best to u. Stay positive (not HER2 positive) and thanks for sharing. I learned something.
Giveityourall
0 -
Bstein, you make some solid points. I think if the patient remains reasonably mentally and physically healthy during the chemo treatments, then pushing through is advised.
After four treatments of TCHP, my nails are buckling; my intestinal cramps are horrendous; my hemoglobin has dropped to 8.7; and my legs (meaning from my hip joint down to my ankles) are swollen. I am so tired of being tired. It is tough.. but I am trying to stay positive and proactive. On Monday and Tuesday, I have appointments with two different doctors to bounce off my thoughts and problems. In the past, I would dutifully listen to my doctor and follow his/her treatment. Managing and learning about my cancer treatments for the last three months, I have changed my approach to medicine. As you and everyone else knows, this is not an exact science. So, I am no longer the quiet, compliant patient. Ihave begun to speak up; question; learn; and evaluate options. That is why I love this forum. I learn something new every day!!
Giveityourall
0 -
Good Luck GIveIt - let us know.
0 -
Hello Ladies,
I am also an ER/PR- HER2+, Grade 3. Stage1A. I just finished my surgery last June 1, and now have to do another one next month due to my Margin being “close". Anyway, I don't know yet the future treatment because I haven't seen my oncologist yet. But all your info are so helpful to get my self ready. I try to think I don't need Chemo, but I guess I have to. 😬 Best of luck to all of us.
0 -
LivM, if you'll go with TCHP, that's very doable. But taxotere (T) sometime results in permanent hair loss. I did it and my hair grew back fine, although my lashes and eyebrows are barely there and I finished chamo in December. It looks like they may not come back as before. AC +Taxol is tougher and can result in heart problems at a later time due to A. Herceptin (H) and Perjeta (P) have minor side effects most of the time.
The treatment for this cancer is long, one year to complete everything including the HP infussions, but there is no need for anti-estrogen medication after that. The medication tends to be effective, about 60% of the women get complet pathological response (no cancer left at all) if they do chemo before surgery.
Good luck with your treatments and the surgery!
0 -
Liv - Did you have the original surgery not knowing about the IDC?
You should check about neoadjucant chemo. When you're hormone negative & HER2+, TCHP is usually done prior to surgery - with Herceptin for the rest of a year after surgery.
I'm surprised you didn't have radiation after your first lumpectomy. I thought that was the standard of care.
If your surgeon isn't discussing these things, maybe you should get a second opinion.
0 -
It looks like LivM just had the surgery, and now is on to chemo. But you are right, Minustwo, I also know that chemo is prescribed first for our type of cancer, unless the person goes with mastectomy. For mastectomy the order does not appear to matter. Not sure if other things, like implants, would change anything. But I had two opinions, one local, one at Dana Farber, and they both recommended chemo first (TCHP).
0 -
I was given the option of Surgery first or Chemo first. I actually choose the surgery first because it fit with my life. I had a big 50birthday trip planned and I could work that into the surgery first option without delaying treatment. Having had a pretty intense chemo treatment 8 years ago had me dreading doing chemo again. And any chance to delay chemo I was all for.
0 -
Hi everyone! Just found this thread and got excited to find others like me.
Friday will be my 3rd infusion of TCHP. I've had a good experience so far. I have one bad week and 2 good ones to recover. After the first infusion, my very palpable mass shrank from over 5 cm to about 1 cm (per my oncologist). I'm currently meeting with my surgeon and plastic surgeon to discuss surgery options. I am a candidate for lumpectomy or mastectomy so my mind is running in constant circles, although, I'm leaning towards mastectomy. I'll be having radiation to follow either choice.
0 -
I finished tchp on June 8th. I had my BMX and SNB prior to chemo. Initially I was scheduled for a lumpectomy and chemo because my tumor was extremely small. 3 days prior to the surgery. MRI showed a second tumor in the same breast. That was a game-changer I went from a lumpectomy to a BMX. I was fortunate because the tumors were removed with very wide margins. So I have 8 months left of h&p. and radiation within the next week. I'm scheduled for a cat-scan and mapping next Tuesday. They are not going to give rads to the lymph node area because only one out of 18 nodes were positive. At the breast conference, there was a debate regarding whether or not I needed RADS to the chest wall. My surgeon, my Mo and this radiation oncologist all felt that radiation to the chest wall area would be beneficial in preventing a local reoccurrence. I'm on board with them. I'm very pleased that I will start my radiation approximately 3 weeks post chemo. I tolerated tchp very well. I have to credit minus2, bcstein , proud to spin abd barred owl for providing me with so much information regarding the process of hormone negative and her2 positive cancer., as well as, interpreting biopsies and test results. My journey has been made easier by other wonderful women sharing their experiences with all of us.
0 -
Jo6359- is 3 weeks post chemo standard for radiation? Next week I'll have my 4th round of TCH and I handled the 3rd round so well I'm wondering if there is any way to speed up the transition into radiation. Ive read a lot of studies on the timing of radiation following lumpectomy and it really seems like the shorter period between surgery and radiation can be beneficial.
0 -
Hi all,
I’m newly diagnosed with the following-
3.5cm
Mass in right breast , gd 2-3 with at least 1 lymph node involved.
ER - PR - Her 2 +
Had CT scan and bone scan yesterday all clear
I’ve had markers out in the breast today and we are going for chemo first to try and shrink the tumour so I can potentially be a lumpectomy vs mastectomy ( this will be decided after 3 rounds of chemo)
I have to have axillary node clearance surgery at time of lumpectomy also.
It’s minimum stage 2 - surgeon hasn’t confirmed stage think she wants to wait until surgery ( is this common?)
Thank you
0 -
Aussie - Welcome but sorry you've had to join us. Yes it seems chemo is most often given first with a HER2+ expression diagnosis. Surgery is easier if the tumor shrinks and you've started killing those cells before they can spread more.
0
