ER-, PR-, Her2+ Roll call
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giveityourall- I agree with you regarding mind and body correlation. I was ready to climb the walls with a 3-week to lay and I cannot imagine where my mind would have taken me with a 4 to 5 month delay. It's a very interesting question to ponder. I'm going to bring it up to my oncologist on the next visit. Presently I'm at home this week. I had cataract surgery Monday and everything went well. They're going to have to do the second die very soon. My ophthalmologist believes the cataracts are medication-induced secondary to chemotherapy. It's treatable so I'm happy. My mother is visiting from Naples so we're playing with my orchids today. No running or strenuous activities until next Monday. That's fine with me I'm having a good time with my mom just working in the yard and putting up Christmas decorations. Hoping you have a wonderful day
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has anyone had a recurrence while they are still on herceptin? I have one more herceptin treatment left, and now I’m having pain in my arm pit and down the side of my ribs by my implant where I had reconstruction/ mastectomy last year. I was hoping it would go away, but no luck. I put a call in to my dr today. I’m hoping maybe my implant shifted, or maybe my bra is too tight, or maybe I’m getting lymphedema- I never thought I’d hope for lymphedema!! Hopefully someone can’t calm my fears
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Hello Erbo321
How did it go? I’m not sure about recurrence on herceptin. Did your doctor say whether it’s possible/likely?
Simmi
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I have an appointment tomorrow, thankfully I was able to be seen soon! I’ll let you know how things go. I’m keeping positive about this, I had no cancer in lymph nodes and the Biggest spot of IDC was less than a cm, but the last time I rationalized something that didn’t look and feel ok, I ended up having to go through a mastectomy and chemo! Don’t want that again!!
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The pain is being caused by scar tissue, Whew! I got a sonogram of my arm pit area and the implant area. She didn’t really talk about recurrence while still on herceptin, she just reassured me that if I have any issues or worries to come back any time. I go for my last herceptin treatment on December 14th!!!
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Erob321 - Glad to hear it wasn't anything too serious. Hopefully scar tissue will continue to heal and you won't be in pain. Congrats on your Final Herceptin!
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Duffyzmom- thank you!
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great news Erbo! I am always terrified of recurrence and I only started treatment 3 months ago.
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Erob321...I thought I posted to you days ago and don't see it. I probably got distracted and didn't hit Submit.
Congrats! Such good news! I have discomfort from scar tissue, too. My surgical site is fine, but under my armpit and under breast is quite tight and tender. I had implants already, so radiation really did a number on my implant capsule. I'm being referred for free flap reconstruction (I had lumpectomy), as reconstructing with healthy tissue is supposed to improve the damaged radiated tissue...We shall see! I hope yours continues to heal. soften and feel better!My last Herceptin was to be 12/14, too. I was delayed several times in November due to reduced heart function on my echo. I was retested, but showed no improvement from the break so my MO called me done! So, I'm technically 3 Herceptin treatments down, but he said not to worry...So close to the end that there is no hard evidence that just a few more would make a difference. Said definitely a difference between 6 months of Herceptin, vs. 12, but being a few short is A-OK. Yay! It will be great to start 2019!
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great news mjb - I think I read that they now think 9 months herceptin is as good as a year. I’ve heard great things about flap reconstruction too. My team are suggesting that I have radiotherapy (15 sessions) after chemo and before surgery so that radiotherapy doesn’t damage my new breast. This is called reverse protocol and is apparently becoming more popular although I am nervous about delaying surgery! My BS and oncologist however seem to think it will make no difference from an oncological point of view. It makes a difference when ladies are borderline on whether they need rads but given my diagnosis I definitely do un
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I am stage 1, her2 +, hormone negative. Had a single mastectomy. 1.4cm with clear nodes and clear margins. I noticed some oncologists recommend tchp (taxotere, carboplatin, herceptin and perjeta)...once every 3 weeks for 6 times then herceptin for the year but others recommend lower dose weekly taxol with herceptin for 12 weeks then of course herceptin for up to a year. Taxol/herceptin is a more tolerable treatment however my MO wants me to do tchp. I prefer taxol/herceptin instead which he would give me even though tchp is his choice. NCC guidelines even show taxol/herceptin is good for this stage. I am 63 years old and dont want a tougher regimen (tchp). Anyone else have taxol/herceptin with this same diagnosis?
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Hi RobynS4 - my mother is in exactly the same boat. The local MO recommended TCH, but I got a second opinion that recommended Taxol / Herceptin (TH). They sighted the following trial: (unable to post links but can pick it up in google)
**** Seven-year (yr) follow-up of adjuvant paclitaxel (T) and trastuzumab (H) (APT trial) for node-negative, HER2-positive breast cancer (BC). ***
Due to start chemo in a few days and trying to figure this out. I also want her to do TH and not TCH as she is 61 years old and even the slightest ailment seems to knock her out. I am also convinced TCH is overkill, but that's my super personal opinion based on going through tons of trials, I am not a doctor.
Would be great if you can share if you find any info you find. She is : ER- PR- Her2+ , Grade 3, No nodes, 1.9CM , Lumpectomy clear margins.
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Hi Robyn. I had the same diagnosis as you, except that there was a very small amount of DCIS on the posterior margin after lumpectomy. I did not have resection since I didn't want another surgery and my oncologist felt radiation would clean up DCIS in the breast. I got the weekly taxol/herceptin followed by herceptin for a year every three weeks (no Perjeta). You can read my posts if you are curious about how treatment went for me. I am three years out from diagnosis, and so far so good.
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Hi Robyn. I too was on the 12 week taxol/herceptin/perjeta with herceptin every three weeks the balance of the year. I was 69 at the time of diagnosis. I did not have any other medical problems and the MO advised, even though he thought I could tolerate the higher three week dose, it would be so much easier doing the 12 weekly. I had few side effects from the drugs. Like Pipandor, so far so good.
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Robyn - where are you? My MO told me Perjeta requires 2cm. I was 1.9cm so I didn't qualify. I chose lumpectomy with TCH and radiation due to previous chemo for blood cancer.
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At the age of 68, I am going to be receiving taxol/herceptin
weekly for twelve weeks. I already have neuropathy, so hopefully that schedule won't leave me totally deaf and in a wheelchair. Am I being glum? Hopefully I will be ok on a full year of herceptin, even if I have to consider quality of life with the taxol. One or the other will have to be full course.
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MC. I can't predict what will happen but I was 69 when I was diagnosed. I did 12 weeks of treatment and then Herceptin for the rest of the year. I had minor reactions. Please be positive. If reactions occur let it be known so the pre drugs and steroids can be adjusted
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MC - at 69 I had the full ride - TCHP every 3 weeks - and then after surgery I had AC since I didn't have a complete response. Then rads and a year of Herceptin. Yes I did have some lingering side effects, but sounds like your doc is planning to monitor your progress. I didn't have problems with the just the Herceptin.
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MC- I've had no issues with herceptin . So try not to imagine the worst. I know it's difficult waiting for the tx to start.
Robyn- when I was first diagnosed with BC the belief was my tumor was 1.1 cm. My MO recommended taxol for 12 weeks and herceptin for a year. During surgery it was discovered my tumor was 2.5 cm with one positive node. My chemo treatment changed immediately. It became tchp. I was told the perjeta was being used because my tumor was more than 2.0 cm. I was told many times by other ladies on these threads who've been through chemo it isn't fun but it's doable. On the days I felt like crap I just kept telling myself keep moving just keep moving. That became my Mantra .I was able to work full time and exercise almost daily during the process. I am 5 1/2 months post-chemo. Sporting a very short hairstyle but I finally got rid of my beanies. My Life does feel normal ( most of the time). Did you ask your mo why he is recommending tchp instead of taxol 12 wks and herceptin?
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hi all I have posted a new topic but also wanted to ask here as I was also ER-PR- HER2+
I’m 1 year post the end of my 13mth treatment and have had another scare. Only just had my mammogram and ultrasound 2mth ago and had all clear apart from my usual cysts. I had an MRI of chest wall and remaining breast about 3wk ago and was phoned on Christmas Eve by my surgeon with results, 2 lesions in remaining breast which he thinks are Fibroadenomas but not to worry (haha sure!). Will have another ultrasound in a few weeks when surgeon is back from holiday. I can’t help but stress as my tumour was initially thought to be a cyst until they saw the fluid colour and had trouble draining it with syringe. I’m just wondering if anyone else has had these Fibroadenomas after or before breast cancer diagnosis? Already had 3 cancer diagnosis’s so I’m a bit over it you could say
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Have a question for metastatic PR-/ER- HER2+ ladies. I was 6 days from being 3 years cancer free. Had a 2 seizures back on 12/3/18 and found several lesions in my brain. Have already had the gamma knife procedure. Hope to get another MRI scan next month. Had a CT and found my cancer has returned in some lymph nodes. My first round of chemo in 2015 I did the whole 9 including the year on Herceptin. This time time around Im doing another targeted drug called Kadcyla. Has anyone on this site had a experience similar to mine (reoccurence) or has used Kadcyla and how they are doing? As many as you know the biggest fear is a reoccurrence which I have have. After that my next biggest fear is death. Not only am I dealing with this which floods my mind every day from the moment I open my eyes is Im on an anti-seizure medication that make me feel awful and depressed. Had my first full on panic attack 2 weeks ago. Im a mess. Im a 43 yrs old a wife and a mother to two girls 8 and 12 yr old. My husband and girls are my life. Im fighting, praying and trying to be positive but sometimes its so hard. Need some positive feedback.
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Erkipper - I can't offer any useful information but wanted to send you light and love❤️. Definitely head over to the Metastatic and Reoccurence Forums. I hope someone over there can give you some good information.
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shell- I've had issues with fibroadenomas for most of my adult life. Once you've been diagnosed with breast cancer you sure as hell don't want your Healthcare professional telling you "don't worry about it" sending you positive thoughts. I hope your test results are clear.
Erkipper- I just completed my last treatment yesterday. My thoughts are with you and I hope everything turns out okay. Reoccurrence is always a frightening thing to deal with.
Last treatment yesterday of herceptin and perjeta. I will have Labs every 3 months. NO SCANS!!!. My doctor is going to monitor my blood work, physical and cognitive status q 3 months. He will only order scans if there's an issue. He reviewed my case in front of the tumor board and my doctors were in agreement. He told me to continue to live my life as I have always lived it. Eating healthy, exercise, great attitude, and being proactive in my care. I'm comfortable with his decision. Knowing how aggressive her2-positive is, does cause a little concern but I'm going to continue to trust my physician's judgement. I also don't want all the anxiety that goes with scans and the many false positives that occur. In my case it truly is a wait-and-see. Good luck to all of us.
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Hi Everyone,
I am coming up on three years in February since diagnosis. Aside from the initial tumors and lesions, I haven't had a recurrence (knock on wood). I am getting my scans next month and I am pretty anxious this time around. I'm not sure why, I guess it just seems that the while the longer I live the better, but that also means moving towards recurrence as well.
Oh well, good health to everyone.
Nancy
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Jo6359
I had been cancer free almost 3 years and before my recoccurence I was going every 3 months for labs and No scans unless there was an issue, just like you. My blood work came back normal every 3 months and the only reason I found out there was a reoccurrence is because I had two seizures and therefore they had to check my brain. It had metastasized to my brain then they ran further scans and it metastasized to some of my lymph nodes too. If I had been scanned regularly I think maybe a different outcome? Who knows though. I'm dealing with one if the most difficult events in my life. Talk about anxiety. I'm now on meds for that too. I pray all the time for the best possible outcome. To live. I live for my husband and 2 young daughters and all my family. I'm on chemo again ang get MRIs every 2 months to make sure no new lesions on the brain. I of course don't say this to scare you just be cautious! Good luck to everyone
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Jo, my heart goes out to you. I hope you find hope and enjoyment in your days. Nancy, hang in there. I'm coming up on 3 years too, and aside from a yearly mammogram and blood work every six months, we don't get scans unless we have symptoms here in Quebec. Whole body x-rays taken in the fall showed no bone mets, but I occasionally get short dizzy spells that worry me a little. Jo, I wish for you and everybody who faces cancer, joy, love and comfort. Thanks for posting.
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Erkipper,
My heart dropped when I read your post. This disease is relentless and unfair! I know so few BC warriors/survivors who are HER2+ like us, and I have a million questions and concerns. Tell me more about your seizures. What are they like? Did you have headaches or any other SE with them? The reason I ask is because my MO had to stop my Herceptin treatments early (due to heart failure), and said for me to come back every 3 months. My labs have been all over the board the entire time I've been in treatment, so who knows what is really going on. I'm terrified of a reoccurrence.
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Erkipper-WOW! That's tough. Thanks for sharing your information. I appreciate it so much. I'm going to be extremely diligent with any changes in my physical or cognitive status.
fishingal- I'm sorry you were not able to finish your herceptin. Several women on the post said they had to stop herceptin early and continued on with no reoccurrence. My labs have been good with steady improvement. I don't know how reliable tumor markers are. There isn't anything easy about this process. There always seems to be questions.
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Hi All,
My mother was diagnosed with stage 3 breast cancer and had undergone neoadjuvant chemo, lumpectomy and then radiotherapy. She is now undergoing her 3 weekly herceptin injections. She is still feeling tired and having mouth sores- although not as bad as during her chemo. Is anyone else having the same side effects? Is there anything I can do to help my mom? She is feeling demoralised as this would keep her feeling the same way till September when her treatment ends?
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Sammi3 - I had good luck with gargling with a mixture of baking soda and water. (1tsp in 8 oz warm water). If that doesn't work make sure to talk with oncologist about "magic mouth wash" it is a prescription mouth rinse. She shouldn't have to suffer with mouth sores.
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