HER2 positive, at age 64

BarbD

I didn't see any recent thread on this, if there is I apologize. Wondering if anyone else is Her2 positive? I am stage 2a because of size of my tumor, but my lymph nodes are clean. I am on carboplatin, taxtere and herceptin. My dr is now suggesting adding a new drug approved perjeta because my tumor was large. At first I was very optimistic about my prognosis, but now I'm more skeptica because I'm grade 3. I've read the prognosis for her2 positive is not so great for women over 60. Not sure this treatment will be approved by my insurance. Is anyone else Her2 positive?

ElaineTherese

Hi!

Yes, there are many breast cancer patients on the board who are HER2+, though not all are over 60. There's the triple positive thread (ER+/PR+/HER2+), as well as a thread for BC patients who are ER-/PR-/HER2+. I wasn't aware of studies showing that the prognosis for HER2+ is not good for women over 60. HER2+ cancer is aggressive, but targeted therapies like Herceptin and Perjeta have meant that BC patients with this diagnosis have improved their long-term survival rates in recent years.

Triple Positive can be found here:

https://community.breastcancer.org/forum/80/topics/764183?page=1151#idx_34526

The hormone negative/HER2+ board can be found here:

https://community.breastcancer.org/forum/80/topics/767013?page=53#idx_1589

SpecialK

barb - almost all Her2+ patients are grade 3 - that is very common, due to the aggressive nature of this tumor aspect. I was diagnosed 7 years ago at 54 with a node positive almost 3cm tumor and had 6 TCH (Perjeta was not FDA approved at that timefor early stage patients, otherwise I would have met the criteria to receive it) continued with Herceptin for the full year and so far, my treatment has been a success. I will be 62 this year. These targeted therapies have been a game changer in the survivability of Her2+ breast cancer and there are many of us doing well. If you are hormonal receptor positive come on over to the TP group, otherwise check in with the ER-/PR- group - it is good to communicate with others who have similar situations!

Shawal41

I am 77. Diognosed in 2013 with lump in left breast 4 cm. ER pos PR pos. not staged as I didn't go back. only suggestion was surgery. I went on a strict diet, eliminating everything man made and eating mostly raw. Also did herb teas and natural remedies. Did well at keeping the tumor stable ( I had PET scans every year.) Due to family issues, I did not stay on my protocol. I now feel that the cancer has increased in size and have some occasional pain in the area. Fear it may be to late for surgery. I think I need to get another opinion on my options now I may see about doing the TCH or Herceptin. I do hate doing drugs though I may have to. Thank you for sharing your results. It is encouraging.

Moderators

Hi Shawal, and welcome to Breastcancer org! We're sorry for what you are here, but glad you've found us!

We would definitely recommend going to the doctor and see what treatment options you have right now, as your circumstances and characteristics of the cancer may have varied over time. For now, you can learn more on Treatments for Hormone-Receptor-Positive Breast Cancer in our main site. Hope this helps!

Please, keep us posted. Looking forward to hearing more from you soon!

The Mods

footloose

BarbD,

I'm Her2 + at age 72. This was an incidental finding after mastectomy for different lesion. The first lesion was ER+ PR+ HER-

it was 1.7cm. The HER+ lesion is 3mm. I've has several lumpectomies in the past, this the first HER+. I see the MO tomorrow.

My Oncotype was 29.

Do not start to be negative about your prognosis. Positivity is what you need and we'll all be sending positive vibes!

Remind yourself, you're going to beat this!!

mistyeyes

I was diagnosed at 56, I was on carboplatin, taxotere, Herceptin and Perjeta. My tumor was completely gone and my surgery was the tissue surrounding the area where it was and 4 lymph nodes. All was clear. I did the Herceptin for another year.

Alicethecat2

Hello BarbD

A grade 3, Her2+, fifty-something survivor, diagnosed seven years ago checking in.

Go for it, gal!

Alice

footloose

How long was your treatment?

footloose

Barb, I'm 72, had a mastectomy ([fortunately] b/c they found 3 more tumors we didn't know were there and one was HER2+.

Saw my Oncologist 1st time on Friday, He suggests Taxol, Perception and Perjeta once a week times 12 weeks, then

every 3 weeks times 13 weeks.

What was your treatment regimine ??

Beatmon

Hi, Barb!

I’m Her2+, hormone negative. Unfortunately I’m Stage 4. Progressed after bilateral.mastectomy without any chemo for two very small 2mm invasive at age 62. At that time protocol did not recommend chemo for such small tumors. 2 years later I had 50 tiny tumors all throughout both lungs.

Started on Taxotere, Herceptin and Perjeta. 4.5 years later still here and still on Herceptin and Perjeta.

Shared all this back info to show you for me....even though I surely don’t feel great, Herceptin and Perjeta have been a great life extender for me. For you, it may keep you from any recurrence which is wonderful.

Some people have no side effects at all from Herceptin and Perjeta. Your onco sounds like he is in favor and would probably go to bat with your insurance.

Best of luck to you

footloose

Beatmon,

Thanks for your post. My Her2+ tumor was 3mm and I kept thinking do I really need chemo for that?

They found 3 others when doing the path - this tiny one was one of the incidental findings.

JanetMara

Hello BarbD,

I just found this topic and I am HER2+, grade3,stage3 measuring 6cm+,with 6 lymph node involvement on L axillary area,(ER-,PR- ) and yes HER2+ is the aggressive type.The treatmentprotocol they say is THCP(TAXOTERE,HERCEPTIN,CARBOPLATIN and PERJETA) and DOCTORS say ,the prognosis is really good if you can tolerate the side effects.I had 2 treatments before surgery and didn't go back for chemo and radiation as suggested,I had a lump on my clavicle that after 2 years,it grew bigger but it was contained,no mets to all other organs,Thank GOD,and had to go for another THCP treatments,so far my tumor shrunk after 2 sessions and the side effects are really harsh on me that the tips of my fingers just bleed without injury,platelets are so low,my gums bleed. This time I had to go on raw diet, avoid all sugars as much as I can(they said SUGAR FEEDS cancer).My ONCO ordered another PET SCAN and I will go this Wednesday and is suggesting a radiation.I am not sure if I will take the treatment since it is so close to my left neck carotid artery and I am so scared that it may affect it and cut or decrease blood circulation to my brain and may cause a stroke.Anyway I will see after the results of my PET SCAN.I am thinking I will continue the THCP protocol.

Hi Beatmon,

You are so lucky to tolerate the TAXOTERE,HERCEPTIN and PERJETA.

Wishing you all a tolerable treatments and good fight for this type of cancer.

God bless us all.

Elderberry

Newbie to Stage III and reading so many posts. Glad to find one for "old birds". Tumour is large and seems to grow more overnight! Seeing the onocolist in next week or so and will lay out plans for chemo and drugs. Trying to stay positive. HER2 pos as well. Fast growing but I heard it is also fast shrinking.

So many emotions to process.

footloose

Elderberry, yes all the thinking is tough. But once you have a plan you'll feel better. I had an incidental finding that was HER2+

b/c I chose mx for a different tumor. The targeted drugs are so improved and have good response. I'm getting Taxol,Herceptin and perjeta. No Side effects [SE] as yet.

Footloose

Elderberry

Hi footloose. I have my onocologist appointment tomorrow at noon. Scared witless but want to get on with "the plan"

Catmac56

I am Her2 positive 2b with one lymph node involved. I was not able to handle perjeta and it was taken out. Otherwise on same drugs as you. Having terrible time with mouth sores. Have had 4 chemos. I think prognosis is good.

Catmac56

mine shrank fast after 1st chemo but had to delay 2nd chemo due to severe side effects.

Moderators

Catmac56, we welcome you to our community. We love reading that your prognosis is good. Not sure this is helpful, but here are a few tips for mouth sores.

Please keep us posted and know we're here for you.

Turkeypoult

I am 68 and my tumor was Her2+. I start TCH+P chemo 9/9. So far the worst aspect of BC has been what I call “surprises.” Mammogram OK as usual? Nope. Surprise! You need lumpectomy. Maybe radiation, then hormones for years. Good news - no node involvement. Wait, surprise! Mastectomy! No radiation. OK now? Nope - surprise! Her2+. You need chemo.

I am a positive person, and I tend to handle what I’m given with a grateful heart as there are many who are not as fortunate. But the unknowns of chemo and beyond are scary if I let them get to me. Meanwhile I try to live in the moment, as they say, hoping for the best and preparing for the worst

dajoway

Hello Turkeypoult,

I am 63 yrs old, and was 62 when I had my lumpectomy. I tried to take my chemo in stride, just doing what I knew had to be done. I had nausea almost every day, but fortunately no vomiting. Peripheral neuropathy started in my feet and then in my left hand. I still have extreme numbness and tingling that won’t go away, and I’m not sure what to do about it. I am still on Herceptin infusions every 3 weeks until mid-August this year.

I hope your treatment is going well. I am back to work full time, but tire easily.

Hannahllrose

I'm HER2 +. I took Taxol, Herceptin and Perjeta beginning January 7 2020. I had to stop for a week and a half due to surgery on my feet. After surgery, I was put on Herceptin, Perjeta and oral Letrazole and I'm still on that. I'm really scared due to what I've read recently about HER2 +. What are your medications?

MinusTwo

Hanna - If you go to "My Profile" and enter your diagnosis & treatment to date, it's easier for other members to answer your questions. You have to make it "public" to the members here. I have lots of questions about what was treated and how.

With a diagnosis of HER2+, like me, you should be grateful. It used to be really scary - but not since the development of Herceptin, Perjeta and several other new drugs. New treatments make it easier to treat than some other variations. BTW - don't believe Dr. Google. Lots of misinformation out there.

DeniseML

Barb, I was diagnosed with HER2+ BC & started 4 drug regimen ( TCH & P ) 8/25. Also, grade 3, Stage IIIB. Goal is still ‘cure’ Per my Oncologist. targeted drugs being the game-changer. Hang in there. I have 6 rounds of chemo + targeted drugs followed by surgery, then 1 year of Herceptin infusions . Stay positive! I will keep in touch.

MinusTwo

Denise - Barb's post was January 2018. She's only posted once since and likely hasn't been back to BCO. But as you can see, there are others chiming in. My initial treatment was the same as yours - TCHP - but I did not have a complete response, so after surgery I also did AC before starting rads & picking Herceptin back up again. That diagnosis was 7-1/2 years ago & I'm still NED. I really benefited by joining a 'chemo of the month' thread when I was in treatment.