ER-, PR-, Her2+ Roll call
Comments
-
Hi there,
My name is Nina... I'm not sure if I have already commented on this thread (brain has not been working very well lately).
xx
0 -
ER-, PR-, Her2+ , Tumor grade 3. KI-67 40%
My infusion is Taxol 12 weeks and Herceptin 12 months. ONLY I did not need AC due to having a double mastectomy with reconstruction cancer in the right breast. Made that Choice of the fear of in the Left breast and for me symmetrical reasons. However, as it turned out I made the right decision since cancer was starting in my left breast as well. Whew! Glad I made that choice! The stories I've read where one has made the choice to remove just cancer breast and the recurrence some less than a year of returning to the other one. Going through the process again!
0 -
I was also her2positive . I also opted for a double mastectomy ( on the NHS ) early cancer was also found in my other breast . I am 2 years post chemo and very fit and well
0 -
So glad to see some of you have posted recently. Would love more news from her2+ -er -pr, and especially stage 3a (I had 4 nodes involved). Always watching for good news and trying to stay positive. My doctor said getting past 3 years without a reoccurance is important--the statistics are more favorable after that. So glad Nevo84 started this thread. Encouraging---best wishes and hugs to you all!
0 -
Alice my whole breast was full of cancer ,Dcis ,plus 5cm tumor also pagets of the breast . I think with her2 from what I've read ( and believe me I drive myself crazy for 2 years on the internet ) that the stages between 2 and 3 are irrelevant. There's lots of survivors with stage 3 year and out who go on to live healthy lives. Please google Lori Lober she is a 17 year survivor with metastic her2 . She written book called Bigger than pink it was a game changer for me
0 -
Thank you, Daisy, for your reply and reassurance. Best love and wishes to you! Will google Lori Lober--sounds interesting.
0 -
as someone who is going through treatment, want to express my highest gratitude to all the survivors who are posting and inspiring those of us who are going through some of the toughest and darkest times of our lives. THANK YOU!!!
0 -
Hang in there Tara and spend as much time as possible doing stuff you love with the people you love. I had a partial mastectomy and started the same Taxol/Herceptin treatment as you in March 2016. The chemo wasn't as bad as I expected, and because I used the cryomits on my hands and feet during the taxol infusion, I barely suffered any neuropathy and kept my nails. My nails were brittle and I had a lot of cramps during the Herceptin-only months but my hair grew back and I gradually recovered from the side effects of chemo (achy joints) that I only really felt once the Taxol and steroids ended. Now that I've finished Herceptin my skin, hair and nails are not as dry and the cramping is almost gone, When I look back on the year, it isn't all bad. I learned what matters in life, who are my true friends and how to meditate. I also learned to take better care of myself. Before long, you'll be there too.
0 -
pipandor --thank you for all the advice. I really appreciate it! I am so glad that you say that when you look back, you are able to say good things about that year. Cant wait to be done with all of this . How soon did your hair start growing back after the taxol? Again, thansk so much for the advice --- spending time doing stuff you love with people you love is the best advice !
0 -
Tara, hair regrowth seems to be pretty variable. Some ladies I knew had a full head of hair two months after chemo. At that point, I only had peach fuzz. Six months out, I looked like I had short hair. My hair used to be wavy. Now it's very curly and since the end of Herceptin has really taken off. Don't quite know what to do with it but any hair is good hair 😁!
0 -
It's 2 and a half years , just over since my diagnosis . I actually feel better than I did before all this . I have just turned 50 and when I was diagnosed at 47 I honestly thought I probably wouldn't get to 50 . My beautiful mum who was my best friend worried for me too but last year she started having pain in her right side which turned out to be secondry gallbladder cancer . She passed away 3 weeks later after surgery to remove her gallbladder ( this is how they found it ) I have always been a bit of a worrier . The lesson is we cannot predict the future none of us know what will happen . I don't worry as much now about this horrid disease and live life for each moment . I have just started my own holistic therapy business ! I am writing this because I used to constantly search for inspiration and if my messages help just one of you the next that's great !! X x
0 -
sorry for my typos!! I write these on my phone and often hit the wrong letters ! X
0 -
Sorry about your mom passing Daisy. Cancer touches so many people. I think it's great that you've turned your experience into a holistic health enterprise. We learn a lot about caring for our health through all of it. Looking at your profile, I was wondering why your treatment did not include Herceptin. Was it by choice?
0 -
Hi Pipandor , Sorry I did have herceptin for a year x x x
0 -
I can't recall if I've posted here either....I've had 2 AC and so far, so good! I am pleasantly surprised at how well I am doing (I had read so many horror stories about AC). My 3rd AC is this Thursday. I'm hoping to discuss Perjeta again with the Oncologist - just don't know why it's not a definite "yes" and is a "to be discussed". Taxol and Herceptin begin June 7th. One step at a time...one day at a time...
0 -
Hey there! Thank you so much for your stories and sharing openly and frankly! I am 45, until next week anyway! I finished 5 out of 6 rounds of chemo in early March 2017 (diagnosed IDC Stage 1, Grade 3 Er/PR -, HER2 + in October 2016). They were unable to adjust my post-chemo cocktail to the point where I wasn't dreadfully ill for almost 10 days after each infusion. Luckily I had total response to the 5 rounds so then had a lumpectomy on right breast with 3 nodes (all clear!!) on April 6, 2017. I have and will continue to receive Herceptin infusions thru December of 2017. I begin daily radiation treatments lasting 6 weeks minimum on Monday. I recently was informed that women that are ER/PR -, HER2 + are the highest reoccurrence group. Is that accurate? I'm a bit freaked out by this possibility - not because of treatment again, although that would really suck! - but by the insurance quandary in the US and pre-existing condition limitations and costs. I'd appreciate any feedback or guidance or kind words you may have to contribute!! Thank you in advance!
0 -
Hi TahoeDreams! I can't spiel off recurrence statistics, but I was diagnosed in January 2008 - multifocal, Ki67 50%, Grade 3.....I certainly hope that they no longer write "Poor Prognosis" all over path reports, because mine scared the crap out of me! But, like I said, that was over 9 years ago, and all remains well!
I got Taxol/Carboplatin/Herceptin, then Herceptin for a year. The addition of Perjeta to the treatment protocol only increases the probability that you, too, will be encouraging people 9 years from now!
Wishing you only the best!
0 -
Thank you suemed8749! I had projeta with carbo and taxotere along with Herceptin. I'm just on Herceptin now and I sure do hope you're right about 9 years from now! Money for day to day living as well as future insurance needs and costa are a gigantic stressor for me!!! Right now I don't have insurance and my treatments are being paid for thru Medicaid.
0 -
Fairly new Dx, Central Texas area. Scared to death.
Married, raising our special needs 16 year grandaughter.
0 -
Are those chemo's what they refer to as TCH?
0 -
Oomawerd - Go to Active Topics and the first group heading has topics for new members. One is a list of abbreviations. I found it very useful to join the current chemo group (like chemo summer 2017 or chemo April 2017). It was helpful to read & share with women going through just was I was.
Did you not do neo-adjuvant chemo (before surgery)? TCH is one of the combinations - Taxotere, Carboplatin & Herceptin - and I had that + Perjeta (TCHP). If you had done chemo before surgery they might have added Perjeta for the HER2+, but I don't think they'll add that it you start chemo later. Since I didn't have a complete response from chemo before surgery (pCR), I had AC chemo after surgery - Adriamycin & Cytoxan. And then rads.
As you can see, I'm in Houston. Are you at Scott & White? Wishing you best of luck.
0 -
not Scott and White. I wish I was. They will not accept my insurance due to a lawsuit between them.
My cancer trip has been so skewed from day one. Long story. But i did not know node status until after they finally decided they needed to know that. So i elected to under go a bilateral mastectomy during the same nide testing surgery.
4 surgeries in a year for my wee spot, was 3 to many.
So far had no treatment other then the bilateral mastectomy. Final pathology was that everything was clear.
0 -
Oomawerd,
I know it is easier said than done, but you have every reason to be optimistic. Your prognosis is excellent. Check out this study of very early stage her2 positive patients. The 3-year rate of survival free from invasive disease was 98.7%!!!
http://www.nejm.org/doi/full/10.1056/NEJMoa1406281
...and the treatment in the study did NOT include Perjeta.
I'm so sorry that you are embarking on this journey, but the treatment for HER2 disease promises great results.
Stephanie
0 -
Ooma - If they don't plan to give you at least Herceptin, I would really get a second opinion. Steph is right. HER2+ was a quick killer until the advent of Herceptin.
My BMX was for DCIS - and they don't test for HER2 w/that to I didn't have any other treatment. Unfortunately I had what was called a local recurrence w/in two years. Since that was in a node by my collar bone, they did test & immediately sent me to chemo. And then ALND (node dissection). Luckily they only had to take 7 nodes in addition to the original 3 nodes for SNB (serial node biopsy).
0 -
glad I found this topic as I am just at the beginning of my journey. Diagnosed may 1st 2017 ..had my MRI yesterday, lymph node biopsy Monday and next Friday CT and bone scans. I meet with my therapy Dr on the 25th to go over the definite course of action. In the meantime I am taking CBD oil sent to me by my brother in California and taking turkey tail mushroom to boost my immunity as well as a very low sugar gluten free diet. From what I am reading this is very treatable and I will be enjoying my children and husband for years to come. He day after i found out i would have thought i was dying the next day, every ache and pain making ne think it was everywhere. I remind myself i am alive and not going anywhere anytime soon. Keeping a positive attitude can do wonders.
0 -
I'm taking a small vacation from Perjeta for a few treatments to see if the joint pain and muscle spasms improv. I've had over 40 treatments. Staying on Herceptin and keeping my fingers crossed
0 -
Beatmom - I hope the Perjeta vacation works. Please so let us know.
0 -
Hi everyone,
I can't remember if i've already posted in this forum, sorry, losing my mind. Recently diagnosed, lumpectomy and SNB. Will be starting chemo on Monday May 15th. I'll be doing CMF with herceptin and radiation. I already have neuropathy in both legs, so the usual newer cocktails were ruled out for me b/c of the risk of making things worse.
I'm super tired tonight, and completely overwhelmed by all there is to learn and do in preparation, even though I've already spent a zillion hours doing research and trying to get ready for this ordeal. So I'll be keeping this post uncharacteristically short.
Bye for now.
0 -
i don't know why it won't let me reply to a direct responce. Lol
I hit the repond button on a specific tesponce but it puts my comments at the bottom. Oh well lol using my cell phone, that maybe the problem .
oncologist will not give me just herceptin, won't give me perjeta.
TCH every 3 weeks for six treatments then herceptin alone to make up a year.
One moment i am confident that i will be fine with no further treatment, the next moment i think i will take the treatment. 2 seconds later i panic about side affects.
I don't know what to do.
0 -
As i think i said my process has been skewed from the start.
It started in 2016, small spot in left breast on mamogram. A surgeon inserted a wire guide right before a surgical biopsy. It was not in the right spot. He elected not to re place in and said he would go by mamogram measurements.
During the surgical biopsy (lumpectomy) he removed a sections, sent it to the lab, it came back clear. So he took another piece, repeated the lab, came back clear, he took a third, it came back atypical hydroplasia?
He closed me up this was May 25, 2016
I went back in July 2016 for a follow up mamogram. Then walked over to the surgeins office next door.
He took to his office where my mamogram was on his computer screen. Told me he did not get it all. Pointed out the markers he had placed during the surgery and pointing at some white spots in the very near the last marker.
Said he needed to do it again. Honest man. Said he would waive his fee. I was floored, i asked what the radiolgist report saud, he said it had not come in yet. Said he would discuss it with radiologist and call me.
The next day his nurse called to say it was fine and they would see for another follow up mamogram in 6 months.
I did not know any better.
On January 31 2017 i went for that 6 month mamogram. Everyone sort of panicked.
A new spot that was not there 6 months ago. Twice as big and less then 1/4 inch from the last marker. Never heard from that surgeon again and i know he got the mamao report, he was the surgeon of record.
Before i knew it my gynocolgist called my husband and I about i have to get a new surgeon, i have to get both breasts removed. I will need my ovaries removed at some point.
She got me a new surgeon. On March 2 2017, the breadt center radiologist herself placed a guide wire while i was standing up afixed in the mamogram machine. I went to the outpatient surgical center and had my second lumpetomy.
He removed a greater amount of tissue and all markers and surrounding tissue left by the first surgeon.
I went home. About 2 weeks later the 2nd surgeons nurse call about 4:00 on a Friday to tell me the pathology was in but the dr was out of the country. I told her to just tell me. She did. 14.22 mm intraductile carcinoma with a 8mm invasive area. And a unclear margin. She had at an oncologist 2 days later on Monday.
My husband i went together. Omcologist is looking at the pathology report. Says her2 status was not in, then asked about my lymph node status. I had no idea what he was talking about.
He asked again did they test my nodes, i had no idea.
Short answer is no, they did not test my nodes.
So her2 comes in positive. Path teport suggested the fish test be redone if material was available because the sample had sat in formulin for 72 hours. It did not get redone.
Surgeon tells me on the phone the cancer was there in 2016. Sats testing the nodes at the time of lumpectomy was not an option.
So we then had another sugery planned, test nodes, have a lumpectomy and radiation and maybe chemo, or mastectomy and just chemo. But that was if nodes were clear.
I just decided on after node testing to do a bilateral mastectomy. So that is what he did on April 11 2017. He also took 4 nodes from the right side.
Everything came back clean.
So i was a bit surprised when oncologist suggested chemo. As my percentage if reoccurrence was 10% without TCH chemo and herceptin and would drop yo 7% with the proposed TCH every 3cweeks for 6 cycles and the herceptin alone for a year or to make a total of a year. I do not understand that.
My choice. He saud i could not just get the herceptin, i had to take the chemo, protocol you know.
Scares the fire out of me.
I just do not know what to do.
Sorry, i said it was a long story. But my journey so far has been skewed.
Oncologist wants me to decide with 2 weeks. That appointment was on May 8th 2017.
0
