TRIPLE POSITIVE GROUP
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Adhoney, that's so great to hear. My BS did an ultrasound after I finished AC. I went from 3cm to 1.7. I'm hoping it continues to shrink while on THP. It appears that mucinous carcinoma with Her2 positive is relatively rare. I'll be following your progress😊
Dawn
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Suburbs - nice to hear from you. Man, you've had a rough time with this stuff.
Kat - Congrats!
Jstarling - Congrats x100! It was such a long road for you!
Due to a lot of confusion between my cancer center, my insurance company, and a bunch of specialty pharmacies, I still haven't started Nerlynx. Got a call about it yesterday though and I'm thinking it will be maybe another week before it shows up at my door. Also, I had my implants revised to wider, flatter (low-plus profile) implants last week and they look so much better. It's like where I used to have a hastily pasted on pair of googly eyes I now have a pair of actual, normal breasts. For some reason though my PS used Allergan Responsives instead of Cohesives or Soft Touch. She also put alloderm on one side when we had specifically discussed it and I said I didn't want any. I swear I have to micromanage this woman to the nth degree, which is difficult when you're under anesthesia. So far it all looks good though - much more symmetric, but not perfect, just like my original equipment. They are much softer than my old Mentor cohesive implants which feels a lot better, so hopefully the rippling can all be addressed, if I even have any, with fat grafting.
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Congrats to those finishing Herceptin!!! I finished May 17th and am down in Costa Rica with my family celebrating. Pura vida!
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Ingerp and jstarling, Congrats. I’m excited for you. Tomorrow is my 14th H&P infusion, after tomorrow 3 left. I’m in the final countdown.
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penny,
I have been down this road. Your only BC options are paraguard (copper iud), condoms, Male vasectomy. It completely sucks. 😥
It took me over a year to get my team to agree on if I was even premenopausal or postmenopausal. Current consensus is pre.
Good luck with your decisions...
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Want to recommend a FANTASTIC movie that I purchased and saw... "Living Proof" Harry Connie Jr, Swoozie Kurtz, Angie Harmon, Bernadette Peters. It is all about the HRT2 Cancer and Miracle breakthrough targeted therapy Herceptin which we are all very familar with now. Its available for $8.99 on Amazon. It is an old film but still well done with many familar faces.
I didnt realize the time and anguish and struggle it was to get the Immune Therapy approve that has literally revolutionized cancer treatment of EVERY KIND, It is a dramatization, yet I have to say a good friend was a nurse at UCLA and knew this Dr personally.
Even with all the frustrations with Herceptin, Genentech really blew things wide open by taking a chance and sticking with it. We are all alive because of this.
Be sure to have boxes of tissues handy.
Angelsgal57
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I own the Living Proof DVD, great movie and will make you cry for sure.
I used the CBD oil when I was first diagnosed, for pain, didn't notice it helping at all, but everyone is different.
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I used CBD during chemo - didn't notice that it helped - tried it again after chemo for pain and nothing. I had high hopes for it. But others swear by it. Everybody is different. Go for it!
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Just had my last herceptin - YAY 😃 - I cant believe it’s been a year since all this crap started - it’s almost a bit scary to be done - knowing that I won’t be getting the infusions is a bit scary but I’m happy to be done and get my port out next week!!
Just wanted to say thank you to everyone - u guys r amazing - so glad I found this site
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Congrats Bheg!!!
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Bheg79, congrats!!!
Based on your date for the first H, did you have a total of 18 as well? Are you going to continue to add Nerlynx or not?
My wife is going to have the second to the last HP this Thursday (she would have total 18 HPs). We are almost there as well
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Congrats to those who have finished either chemo or targeted therapy since I last posted! Fantastic milestone! Yay!
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hello ladies,
I hope everyone is doing good?it’s been a while since I last posted. Been going through a lot of emotions and wasn’t feeling motivated but I read all your posts.
Last Thursday, I had my last herceptin and perjeta yaaay!
Will be having a surgery next week. Port out, nipple reconstruction for the cancer side and revision surgery on the good side.
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Princess_Meg,
Sorry if I did not follow all your posts before, but just out of curiosity, per your profile, why did you have Perjeta 6 months later than Herceptin?
Thanks.
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Lilych, that was because my HER2 was equivocal initially so I had chemo without H (neoadjuvant) then HER2 showed up strong during mastectomy (post surgical pathology report)
So I had 18 Herceptin and 10 Perjeta in total.
Perjeta was included when my MO felt comfortable enough as per my ejection fraction. (Which was a drag and my treatment was put on hold at some point
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Thanks, Princess_Meg.
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I was wondering how many of you have decided to have Nerlynx after one year treatments of H or HP. I would really appreciate if you could share your experiences and thoughts.
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I'm half way through 6 rounds of TCHP. Then will finish out H for year. Has anyone heard anymore about the Hercpetin Hylecta subcutaneous shot? Wondering if it will be possible to switch to that once I'm done with chemo. Has to much less expensive and certainly less of a hassle.
Oh and do they always continue with Perjeta with the Herceptin? I believe MO only told me Herceptin - didn't mention continuation of Perjeta. Just wondering...
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Lilych I will be starting nerlynx September 1st and that’s because I want to enjoy my 40th birthday in Peace with no fear of diarrhea or other SEs.
Alicesneed I am guessing your MO won’t be giving you perjetaas yours was only stage 0 with no nodal involment, I stand to be corrected.
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LilyCh, here is a nerlynx topic link that you may get some good info from. https://community.breastcancer.org/forum/80/topics/870980. I was part of the last clinical trials and finished the 1 year treatment with no sever side effects. Tomorrow will be my 5 year anniversary of finding out I had BC.
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LilyCh, I started nerlynx after 6 treatments of TCHP every three weeks and then Herceptin for another 12 treatments every 3 weeks. I lasted on it for about 6 months. At the time I was also taking antibiotics and the combination of the 2 ruined my gut health and was too debilitating to continue. I gave it my best try. Your situation may be very different. There is no harm in trying. I look back at it as an insurance policy.
Regarding continuing perjeta with Herceptin, when I started treatment in 2017, the only way to get perjeta was that I had a tumor greater than 2 cm and I had not done chemo previously. Then, it was approved for only 6 treatments. Protocols change so rapidly these days, those guidelines no longer apply most likely. Many participants here never had perjeta.
Congratulations to everyone finishing up their treatments. And for those still in active treatment, express your concerns and keep coming back. The ladies here are a lifeline and kept me going during some tough times. All the best
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Hello,
I'm new to the board and taking helping take care of my Mom through her treatment. She was diagnosed in April and having her 2nd neoadjuvant TCHP tomorrow. She's triple positive, stage 2 and will have surgery in the fall after 6 rounds of TCHP. I'm hoping to be able to keep her informed with helping research and navigate all the daunting information as she's not on the computer much.
Alicesneed, My Mom's Oncologist has told her she will continue Herceptin for a year, plus or minus Perjeta. He said he wanted to see how she did with side effects on Perjeta and he said that it gives about 1% increase survival. Has anyone else heard that percentage with Perjeta?
You're all so brave and strong! Positive thoughts to you all for healing.
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LilyChi
I had 17 Herceptins and my oncologist has not said anything about nerlynx but I will ask her when I see her in July - I dunno if it makes a difference I’m in Canada but I feel like she would have said something about nerlynx already if she wanted me to take - maybe it’s not used in Canada as much.
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curemom, sorry to hear about your mom but this sight is great for info and support. I’m on both herceptin and Perjeta after my initial TCHP treatments. My OC put me on both, even though I had a PCR, because I had node involvement along with three instances of cancer in one breast. Also, I didn’t have terrible SE from Perjeta. From what I understand is the % improvement was small but the two drugs attacked the cells differently. I wanted to attack the her2 however I could so the slight improvement didn’t bother me, especially since I tolerated the meds. I will try to find the article I read but it’s been a while since I read it.
Take care.
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This is a good article on H&P on this site. I will also look for the info on how it goes after the protein differently.
Herceptin Plus Perjeta Slightly Better for High-Risk, HER2-Positive Disease Than Herceptin Alone
https://www.breastcancer.org/research-news/herceptin-w-perjeta-better-than-alone-for-some
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I have a question. Is Kadcyla a new regimen for women with Her2 positive breast cancer? I saw MO yesterday and he was talking about putting me on Kadcyla after surgery. He mentioned it after doing my breast exam which is always at the end of our visit.
I left thinking it was just another drug but after some googling, see it's a chemo combined with Herceptin. I have a list of questions for him when we meet again in 2 weeks.
Any information on why I would need Kadcyla after surgery would be appreciated.
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Here is the study on H&P - you will see there is still a lot they do not understand about how the two work but does state they go after the protein differently. It is not an easy read....
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dawn - all of the targeted treatment for Her2+ (and most cancers) start first trials for metastatic patients. Herceptin was initially used in this setting in the late 90's and then found to be effective for lower stage patients as well, so was started for early stage just a few years before I was treated in 2011. Most patients followed the typical course of surgery, then chemo with Herceptin, then rads if needed. Perjeta followed the same FDA approval course and was approved for early stage in late 2013. When Perjeta was approved for early stage it was only approved for neoadjuvent use - this is what has prompted the now more commonly seen neoadjuvent treatment for Her2+ patients with tumors larger than 2cm. After a period Perjeta was also approved for continuing adjuvant use as well. Kadcyla has been used for about 5 years for metastatic patients, but due to some more recent trials it has been found to help those early stagers whose neoadjuvent treatment has not allowed a pCR, and was approved for early stage to help with this just last month.
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SpecialK, thank you for the information. I was pretty disappointed yesterday to read that Kadcyla is a chemotherapy. I was really looking forward to being done with chemo 7/12 but everything I've read (besides side effects) on Kadcyla is very hopeful. My pathology report shows both the tumor in my breast and the lymphnoid has mucinous features. I know they can be resistant to Herceptin and wondered if that's why he's recommending Kadcyla. BS didn't seem concerned about the mucinous features. He said he'd get it during surgery.
I guess I'll know much more after surgery.
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dawn - compounding the murkiness of the waters for us TP patients is that it is hard to know which thing - ER+ or Her2+ is driving growth, and having anything additional, like the mucinous features of your tumor, makes it even more complex. It is good to know there are additional weapons in the arsenal. Getting over the treatment hill, only to discover another hill, is hard though, right? I freely admit to being a little envious of those who received Perjeta - I am a dinosaur of sorts, only had TCH with a nearly 3cm tumor and was node positive. The upside - still here! I am a proponent of aggressive treatment at the outset, when warranted, so knowing how recently Kadcyla was approved for this purpose, good on your MO for being willing to use it if necessary. Keeping my fingers crossed for only good news at surgery time! Hang in there!
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