ER-, PR-, Her2+ Roll call
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Hello all,
I’m BC newbie. I’m ER-PR-and Her2 +++, grade 3 with at least 1 positive lymph node. I have just finished TCHP, surgery done last week with PCR. Any one on this board is doing Herceptin and Perjecta for a year as adjuvant treatment after PCR? How are you doing with them? Do you have any serious side effects? Should I do Herceptin only? Thanks.
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map - Most HER2+ people do at least Herceptin for the rest of a year. If I remember correctly, it was 17 doses.
I had neo adjucant TCHP. Personally I stopped the Perjeta after surgery and continued Herceptin only. The Big D was overwhelming and I'd lost 60 lbs that I didn't need to lose. Other than that I didn't have any major problems,
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1982M, thank you very much!
Map, I finished chemo on August 18th, and my surgery was on Oct 6th. I had two HP only infusions during this time with no major side effects. I had PCR, so my MO changed my infusions to Herceptin only. The reason mainly financial as in Quebec Prejeta is not covered by our government and the hospital was paying for it.
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MinusTwo,
Thank you for your reply. After TCHP and surgery, my treatment plan was with Herceptin only for 18 doses. My MO said with PCR, risk of recurrence is about 18%. When I talked to him about adding Perjecta, he said because of my young age (I'm 42) and lymph nodes involvement, they can do Perjecta and Herceptin to low my risk to around 6%. I would do anything to live longer to see my kids growing up but I'm also worrying if there is any serious side effects.
I have been following this board from the first day of my storm. I want to say thank you a lot to ladies on this board who help me to understand about BC, give me hope and strength to make it through my scariest days. I pray for a day we have a cure/vaccine for all kinds of cancer.
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Aram,
Congratulations on your PCR! Thank you for your reply. My chemo was done on October 21, surgery November 22. I'll see radiologist next week. I hope I will be ok with the next several rounds of treatments.
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Mapmap79,
I inquired about adding Perjeta to my Herceptin, but my MO said it wasn't needed because my tumor was under 1cm and had not spread. I would definitely do it if I had your diagnosis. 18% to 6% is cutting your recurrance risk by 2/3. Why wouldn't you do it?
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I did the full year of H&P — just finished in August of this year. The side effects were all fine for me — the diarrhea was never extreme and slowly got better where I was only taking Imodium a few times a weeks instead of daily. I did have some weird, vague “don’t feel quite right” fuzzy head symptoms, but they were intermittent and mild.
My energy slowly returned once I was done with chemo and radiation, and now a few months with no treatment and I feel pretty close to how I was before this whole nightmare started. I saw my MO today for a six-month check up and I said I was about 95% back to normal.
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MochiPie, I’m concerning about side effects and resistance. I’m going to have 10 more rounds of HP. But you are right, It’s worth to try to cut recurrence risk by 2/3. Thank you.
Melbo, I’m glad that you are done with your treatment and back to your normal. I can’t wait to go back to my normal life. Thank you for sharing your experience. I had mild diarrhea with TCHP and it was controlled easily with Imodium. I hope I will be ok with HP too.
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Map - I am with Mochie - go for it. You can always drop the Perjeta if you develop insurmountable problems.
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MinusTwo,
You’re right. Thank you.
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Wow, 1982M, thanks, what an insight into Neratinib! I would also add that relapse primarily in your brain is pretty rare, so I don't think Neratinib is important here, as visceral organs are well covered by trastuzumam+pertuzumab in neo/adjuvant setting for early stage disease, I think this will remain more or less standard for many years. Saulius
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Hello everyone,
I have noticed that my fear of recurrence is getting worse now that I am nearing the end (hopefully!) of treatment. I was wondering if it's normal and how you are all coping with this.
Sending so much strength and light to each one of you!
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Mapmap, when I see your signature, I thought it could be mine. I am 43 and about to get 5th TCHP out of 6, end of January is my surgery. I will also get 1 year H and P after that Radiation is still in discussion.
What kind of surgery did you have? Will you have reconstruction?
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Sarah,
I had right mastectomy with tissue expander placed above chest muscle. I’m planning to have reconstruction with silicone implant but I’m thinking about latissimus flap also. Still can’t decide yet. PS said that I have to wait about 6 months after radiation to get exchanged.
You are almost finished the hardest part. I wish you all the best.
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Jasmin,
Same here. I’m still on treatments and honestly there is not a day I don’t think about this disease and my kids. It is harder for me at night.
I try to get busy as much as I can. I talked to my oncology nurse practitioner last week. She said she couldn’t recalled any patients achieved PCR had recurrence in the first 5 years after treatment. I felt relieved a bit.
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Jasmin, what helps me a lot is not letting my mind to go to what ifs. I try to live by what I know at the moment. It is not easy and I am not successful all the time but at least I am not drowning in anxiety.
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it got better for me. I finished treatment in August and a lot of days I don’t even think that much about cancer. I have had a couple of extra mammograms and ultrasounds because of a new lump I have felt, but even then I knew realistically it was 95% certain to be benign and I didn’t get too crazy about it. (The lump was necrotic tissue where breast tissue lost access to a blood supply and died — forming a lump.)
My MO has reassured me over and over again that this type of cancer almost never recurs after a PCR. It all sucks, but it does get better.
*hugs
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Hi all, I don't think I've posted to this thread yet but wanted to join you. I've had a hard time finding others that are ER-/PR-, HER2+ and an even harder time finding anyone with this who is stage IV (not that I'm disappointed there aren't more). I was diagnosed de novo stage IV, ER-,PR-, HER2+ with metastasis to the liver and bones at the end of April this year.
I started out on Paclitaxel, Herceptin and Perjeta. Now I'm on Ogivri (Herceptin biosimilar), Perjeta, and Zometa.
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Wish more were like me. But as a class we are all a rarity. Prayers for you and all.
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kris_2000, you are right, it is not very common. How is your treatment going? My oncologist believes hormone negative, her2 positive has a good prognosis even for stage 4.
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Aram, I hope your oncologist is right. I was able to stop chemo after 6 months and just remain on the targeted therapy so that's good but it's early yet. My side effects now are pretty limited especially compared to chemo so I'm trying to be positive.
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There is a reply in one of the threads here that mentioned only four percent of BC diagnosed is hormone neg, HER2 pos. It might even be buried in this thread somewhere. I was told that our stats usually get us PCR in about 70 percent of cases, which is a very good number. I got only partial, but my oncologist thinks if I had been on chemo longer it would have resolved. So, hopefully the science works in our favor.
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We HR-/HER2+ are definitely a small group.
Jasmin - I was very nervous about pulling the plug (port) but my oncologist really thinks that I am not going to get a recurrence. Try to focus on everything else you have going on and the anxiety about recurrence lessens. Doesn't go away completely though
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The odds of recurrence for those of you in early stages are definitely in your favor. Stay aware and check regularly but try not to let tomorrow's worries ruin today. I know that's not easy.
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DogMomRunner, I went through an ordeal 10 years ago with lymphoma. When I was finished and had the first check up with PET, my onc gave me green light to remove the port.
With port being removed, I felt much better, as if my worries were also removed with port :-)
Now for BC I needed port again, they used the same scar and put it back up there. So in the unlikely chance of needing it, you can get it placed back without having another scar.
Oh and the new port is much better, smaller and more functional so I am glad I got it out back then.
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" try not to let tomorrow's worries ruin today. I know that's not easy." Well-said.
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Hello, I hope every body are doing well. I’m wondering if you guys did PET scan before chemo treatment. I only did MRI, mammogram, ultrasound as ordered from oncologist. I had a positive axillary lymph node where they did biopsy. After chemo, they did MRI, Mamo, ultrasound but I haven’t done any PET scan. They said I had PCR after surgery but I’m still worrying if there was any thing that they missed without PET scan at the beginning. Are MRI, mammogram, biopsy and ultrasound enough to rule out cancer stage?I’m sorry for my silliness.
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mapmap79, you can see below, my diagnosis was very similar to yours but I did not have a positive lymph node. I have never had a PET scan since diagnosis. My MO won't scan post-treatment unless there's a symptom of concern. Last I saw him I had ongoing shoulder pain that I was pretty certain was an old injury that was not helped by radiation, so it prompted scanning--but it was MRI's of the shoulders and spine, and the pain was not cancer-related.
Hope this helps.
*Edited to add that my diagnosis line is incorrect since the update to the website. My tumor was ER/PR- and HER2+.
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I didn't have a PET scan at all. After diagnosis, I was sent for a breast MRI, chest CT and bone scan. All were clear. I was sent for a brain scan after I lost my eyesight temporarily but that was also clear. I had a follow up bone scan a year after diagnosis as I had some pain in my hips, and I had ongoing scans due to issues in my lungs. All is well. My oncologist will only send me for scans if there is an issue (lump, pain, congestion etc). He refuses to do scans just to make sure all is clear because he said it results in added anxiety for the patient. I'm ok with that!
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mapmap — my diagnosis and age was almost completely identical, the only difference is that I had two tumors and the biggest one topped out at 2.9 cm. I was staged at 2a and before treatment my doctors ordered a ct scan and bone scan, but insurance would only pay for bone. (Insurance claimed it would only pay for ct for stage 3, but would pay for bone scan — it was stupid, but my oncologist didn't think it was a huge des so I didn't fight it.)
During treatment I had a brain MRI for some dizziness (turned out to be side effect from H&P) and later a liver ultrasound (chemo caused fatty liver disease). I never had a pet scan and I never did get a ct scan.
I haven't been too worried about it. If I have a specific issue they have been quick to check things out.
edit:My signature is wrong — I was Er/Pr-, Her2+0
