ER-, PR-, Her2+ Roll call
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I had TCH - Taxol, Carboplatim and Herceptin, but it was three years ago, they didn't have perjeta then. I also heard the AC was heart toxic so that they sometimes don't like to use it with Herceptin. I had a very agressive cancer and there was a risk that I was possibly triple negative. My HER2 pathology was weird, one hospital showed me as clearly HER2 positive, the second opinion hospital ran their own pathology and showed me as negative. Then they sent the same slide to Mayo and their test was inconclusive. Both oncology teams agreed they shouldn't risk not treating me for the possible HER2+ result, but, because I was also ER-PR- if I was in fact not HER2+ then I was triple negative, which they usually like to treat with A/C.
Anyway, I did the TCH and knock on wood so far so good. Wishing you all the best. I also wish that I had treatment prior to surgery. They changed the protocol on that shortly after my diagnosis and treatment so I had a BMX first, then chemo and Herceptin. Which the down side is we didn't get to measure whether or not my tumor responded because they had cut it out first.
Best of luck to you.
Julie
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Hi again! 06elise, so sorry for the confusion. My TN friend only did AC with Taxol, No Herceptin or Perjeta. Evidence suggests that Herceptin with AC can hurt the heart worse than when using Taxol or Taxotere with Herceptin.
Hope that helps!0 -
Adriamycin - the red devil - can cause permanent heart damage & the docs monitor continually. I had "echos". Herceptin can also cause heart damage but it is not usually permanent. Still, I had sporadic heart monitoring the entire time. I don't believe they give them together. I had TCHP, then surgery, then AC, then Herceptin again.
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Hi there
I am her2+ 2a I had 2 lumps in my right breast and was given the ACTHP we did AC bi weekly 4 rounds and then T with HP. T is weekly and the HP is given along side for every 3 weeks for a year while we stopped the taxol after 12 weeks. I just finished last week but still need to continue the HP.
Good luck
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June15 That sounds like the same treatment & same pace as the chemo I'm about to receive! (First AC this coming Monday.) I keep seeing others on these forums with those full 3-week intervals between doses. So if you don't mind my asking...
How were your side effects at each chemo phase so far? Did the bi-weekly AC give your body enough time to recover between doses? And were the effects of the THP noticeably different?
Feel free to ignore me if I'm getting too nosy. It's just nerves. *sigh*
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julieho & MinusTwo The nurse who performed my baseline echocardiogram last week did mention I'd be back there periodically throughout my chemo treatments. The heart is a pretty important organ, I'd say! Glad they are on top of it at the onset!
I hope the other nurses in that unit are as fun and informative as she was! She started by asking whether I wanted to see the screen or get a play-by-play description of what we were looking at. YaYesss!!!
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I went for my first chemo treatment today. I was scheduled to have TCHP,. But during my pretreatment doc appointment, he indicated he was not going to give me Perjeta. He said my insurance company would only approve perjeta if my mass was larger than 2 cm (it is 1.6 cm). He said he was okay with that because my bone scan, ct of thorax and of brain all came back negative for cancer. He was very happy and thought my prognosis was excellent. Then he told me that the insurance company did not approve the neulasta shot. He said he didn't understand why they would do that -- but said he would schedule a blood test every week together with an hydration infusion. Guess the insurance won't approve the neulasta until I'm sick.
I was all geared up to have the perjeta and am now worried that I have a greater risk for recurrence now especially with my receptors being negative and HER2 being positive. I wish I could just be happy rather than be such a worrywart.....
TCH was good. The benadryl & anti nausea meds made me feel like I was all mixed up -- one minute I was tired and the next felt like my legs needed to be stretch and I couldn't get comfortable and my brain felt all jarbled. They gave me the Herceptin first over a 90 minutes. Taxotere was an hour and the Carboplatin was a half hour. Nurse told me I'd feel good today & tomorrow and could start feeling side effects by Sunday/Monday. We'll see what happens.
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Gentlebird, sorry you are dealing with insurance. I think sometimes that's more stressful than cancer.
I had a very hard time with the Benadryl, which made me sleepy and high. They finally switched me to hydroxyzine, which I found much easier to tolerate. Maybe an option?
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I just came back from my nine years from finishing chemo (eight from the end of herceptin) annual visit to my oncologist. All blood tests, tumor markers and chest x-ray results are normal and I am good to go until my visit next year.
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Great news, Sassa! I've always looked for your posts since our diagnoses have a lot in common and you're about a year ahead of me. Good to see you doing well.
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Doing the happy dance for you Sassa!! Thanks for sharing your news!!
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Sassa - thanks for sharing. How nice to hear success stories.
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Thanks for sharing!!
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Hello, I am newly diagnosed. First chemo was yesterday 5/13/16. They are giving me herceptin, perjeta, carbo and taxotere. I know one friend who was hormone positive who took the taxotere with poor hair results. I would prefer taxol (will they let me change). I'm a young very healthy, active 50yo, Er/Pr- her2+. Stage III, 4/6 lymph nodes positive, very aggressive 9/9, bone scan clear, CT <4mm spot in lung watching. Does anyone have any stories about taxotere and hair regrowth, both good and bad? Thank you.
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I wanted to share that I am 8 years clear after TCH (Taxotere, Cytoxan, Herceptin) treatment.
Darlao - I did lose all my hair, but it has grown back just fine. I keep it shorter and it is full and healthy.
Best to all Stay strong and positive.
Michelle
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Hi Darlao---Scary, but gets better. I think taxotere and taxol are the same thing--seems everything has 2 names. My DX was similar to yours. My treatment was just before Perjeta so only had TCH (taxotere, carboplatin, Herceptin). Yes, lost my hair, but has grown back healthier than ever! Best wishes to you and hang in there--you'll do well.
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Just a fun tidbit, taxotere is given every three weeks and is made from the European Yew tree needles and Taxol is given weekly and is made from the bark of the pacific yew tree! Just taking out herbs
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Interesting--thank you, bstein, for the correction. I'm learning as I go along!
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- I had TCHP in Spring 2015. I lost my hair but I'm happy to report it came back as thick as ever! And the cancer is gone!
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another one checking in.
Done with mastectomy + expander, Taxol + Herceptin for 12 weeks, Radiaiton.
Now will continue Herceptin for the rest of the year and have to get recon surgery.
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Nevo--This is old news now, (several months ago) although do check in often, but wanted to tell you again, thank you (and also for your past replies) how much it means to see your posts and see how well your mom has done. Am sure I speak for others, too. I identify with a similar diagnosis as you know. Gives me great hope--I treasure and love every day--but probably will never feel as carefree as before this DX. Keep posting and encouraging us!! Life is good! Hugs and love to you--hope YOUR life is going well, too! You deserve it.
Stephanie
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Just found this thread and this is my diagnosis so I will join in. I have finished my FEC and T(h) chemo. I had 3 of each. The h - Herceptin I just had my first dose by itself on Tuesday, and will continue for 14 more, 18 in total. Everything happened so fast for me, I still can't believe it is happening to me. I start radiation on Thurs for 21 treatments -15 plus 6 boosts.
I had my first mammogram last November which started all of this, a small spot was found which was biopsied. I had a lumpectomy 11 days after getting the results of my biopsy and it hasn't stopped. What a whirlwind!
I am 4 week PFC and my hair is growing back and I was on Taxotere. I found Taxotere much more difficult than FEC (red devil mix) , yet those that do AC seem to find it much harder than taxol. I guess it all works out in the end. I think the steroids made it worse and I was on triple the dose with Taxotere than I was with FEC.
Overall, it has all been doable and not nearly as bad as I anticipated! I can finally see the light at the end of the tunnel.
I'm still learning a lot about all of this. I has no clue about breast cancer when I was dx. I just got a copy of my pathology report last week! I've been so scattered with going through all this that I had never asked for a copy!
Glad to have found a thread with such positive outcomes! Nice to know I am not alone in this journey too! I used to get confused with the different tx that people were getting, clearly because of my lack of knowledge with BC
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I'm just checking in for the roll call. I'm currently scheduled for a bilateral mastectomy in mid-July. I'm apparently a bit of an odd duck because I've elected to forego neoadjuvant therapy and doubt that I'll do adjuvant treatment either.
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Hi!! just checking in.... Been on these boards for a while. Posted a lot in the beginning and now not as much. I'm doing well and coming up on my 3 year anniversary! Thank you God!!!
VLH...your treatment choice isyour own but I'm here today because of the treatment. Like so many other women here, we did it because it is doable. If nothing else, please do targeted therapy ( i.e. Herceptin, Perjeta, TDM-1 etc). If you stick to these boards, you'll hopefully find the answers and support you need. Wishing you all the best. Xoxo
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VLH - since you are HER2 positive, you might want to read through the posts on this thread. I really believe in the targeted therapy even if you decide not to do chemo.
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VLH, firstly I'm sorry you have to go through this! I know you have thought this through and I understand you have other health issues. The treatment really is pretty easy to do so don't decline treatment because you fear you can't bear it. You can and you will if you choose too. As long as you are kind to yourself when you look at this fork in the road and know you made the best decision you could with the information available.
No one dies from beast cancer if it stays in the breast, only if it spreads. Surgery will provide you with local control only. It's a risk that you are willing to take. A risk that cells haven't traveled yet. HER2+ is a sneaky disease. I had a 1cm mass with no evidence of lymphvasular invasion and lymphnodes looked clear on MRI. I would have just carried on with the usual 4 rounds of chemo and Herceptin for a year following surgery (standard for all stage 1-3 HER2+). BUT because the breast MRI could see my liver they saw something there. Stage 4 from the start with no symptoms. It was a miracle it wasn't missed! I guess it would have shown up a few years later when I had symptoms and we would have diagnosed me stage 4 and started treatment with much worse disease.
I am a nurse that works with breast surgeons and navigates breast cancer patients. We were all stunned how this could happen. That HER2+ cells snuck by the lymph system like that. I just had my one year anniversary June 23 and I'm greatfull for my life saving H&P every three weeks, I look forward to getting those antibodies and believe that I will be fine! I will be here for the great discovery!
Hugs to you as you start your own journey with breast cancer. When you study it and look up stats, etc. just make sure it is HER2+ stats as its a different beast!
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Thank you for the input and encouragement. If one chooses adjuvant targeted therapy, do you have to wear the tissue expanders for six months before proceeding with fills and implant exchange? That would push me into a new insurance year and another year of paying my maximum out-of-pocket would likely cost me my house as well as the credit raing I've carefully nurtured since age 16. I'm in that spiffy category where I make too much to qualify for income-based help, but not enough to deal with a health crisis.
I feel like I've been doing the "right" thing my entire life and it hasn't worked out very well. It may be time to just toss the dice and hope for the best, but I really appreciate the help in evaluating my options. :-)
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VLH - I was also hormone negative & HER2 positive with IDC grade 3 - but that was the recurrence two years after BMX surgery for DCIS. So yes, they got clean margins but things escape. With the recurrence to the lymph system, I had neo-adjuvant chemo that lasted 6 months before ALND surgery.
As for reconstruction, every doc is different but I choose slow fills to minimize the discomfort and then my plastic surgeon wanted to wait a couple of months for the skin to get fully stretched, so yes it was 6 months between the BMX surgery when expanders were placed and the reconstruction.
Sorry you've had to join us. We'll be sending support while you make these difficult decisions.
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I'm so sorry that you had a recurrence, minus two. Darned sneaky cells! >:-(
Barring complications, the plastic surgeon thought we could probably get the exchange done by year end. I didn't make it clear that my question was whether one could still proceed with the fills while doing targeted treatment at the same time. Since I'm already deviating from the standard of care, I don't know if I would encounter an issue with gaining insurance approval for adjuvant HP only or if the oncologist would go that route.
Thank you for your kind thoughts!
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Sorry VLH, I don't know the answer.
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