18 months of chemo. Normal?

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jfe
jfe Member Posts: 1

My wife was diagnosed with breast cancer, IDC, in mid-March. Initially we were told it was stage 2, one tumor about 2cm (target surgery=lumpectomy). Each time we spoke with the doctor over the next month the diagnosis was worse, even though the cell proliferation index was 15. The 2nd week we were told it was 1 tumor, 3-5cm, stage 2c. Then 2 large tumors and a lymph node. Then stage 3c, 2 large tumors, they ended up doing a full mastectomy, and taking 33 lymph nodes. Now my wife is scheduled for chemo, 3 phases (1 every 3 weeks for 12, 1 every week for 12, and 1 every 3 weeks for for roughly a year), total of about 18 months. Is it normal to have THIS MUCH chemo? I've spoken with a few other IDC survivors, and they all had chemo of 3-6 months. Should we get a second opinion? Based on the types of chemo, the 1st and 3rd phases are the most dangerous. My concern is my wife will end up dying from chemo. She's in the hospital right now, after her first dose, with dangerously low white blood cell counts.Her blood pressure is also up dramatically, and she had a toxic reaction the day after the first chemo.

NOTE: I'm doing the worrying for my wife. She knows chemo is dangerous, but doesn't know that a significant percentage of "cancer deaths" are from chemotherapy/side effects being lumped in with cancer itself since American docs don't necessarily report chemo deaths to a central location for tracking/reporting.

UPDATE: i hit the reply button, but after I typed a response I couldn't find the button to post it so I inserted it here.

Thanks very much to everyone who replied. . The information on chemo deaths came from a Royal Academy of Medicine study done by a doctor in England. One of the things he pointed out was that chemo deaths are not tracked nationwide in America, so chemo death statistics are not accurate. I'll see if I can find the original doc. I found it last month and may have bookmarked it. I'm not as concerned about that, but if it's a problem that I don't have a source, I'll delete the post.

For HER2, my wife was equivocal on 2 tests and positive on the other so they said theyd treat equivocal as positive since it wasn't negative. For lymph nodes, quite a few (23 or 24) were positive. .I do remember there were two tumors, but don't remember the final sizes. The last stage we were told was 3c. The other data is in her "battle book", the book that contains all the paper copies of tests, symptoms, warnings, etc. I'm going to see her again tomorrow in the hospital before I start work, I'll record the answers then.

Targeted treatment is the chemo, as already discussed, followed by radiation, followed by 15 years of hormone therapy. The first regimen was called ACTH, I do remember that. The 2nd one was Pacl-something and Trastu-something, don't remember the exact names. I can get that tomorrow. The third,long cycle, was also the Trastu-something. Again, sorry I dont have that data in front of me.

BTW, did speak with the wife briefly. She said her white cell count is very low, and now when they come in to see her they're wearing hazmat suits for her protection. Oh, also the toxic reaction she was experiencing is gone, and her bp is actually dropping down to almost normal again, so that's an improvement.

UPDATE2: Wife is now in an isolation room, with severe ?neutropenia? Looks like she'll be there for at least another day, maybe 2. I'm not allowed to visit her since I have an infection and an abcess. .

Thanks again for the replies.

Comments

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    jfe - we would need a lot more information to answer correctly. Remember, IDC encompasses a myriad of different diagnoses.

    What is the final stage & grade? Is she ER/PR positive? Is she HER2 positive? What was the final size of the tumor(s)? Out of the 33 nodes, how many were positive? Has she had genetic testing? What was her oncotype score? Are they planning on rads later?

    What chemo is she taking now? What are all the other recommendations? Are you at a major teaching hospital? Or a NCI designated cancer center?

    I was HER2+ and had 6 rounds of TCHP - three weeks apart - before surgery (18 weeks). Then surgery. Then 4 rounds of AC - three weeks apart, because I didn't have pCR (the tumor didn't completely dissolve before surgery) - another 12 weeks Then I continued Herceptin for the rest of a year - every three weeks for 17 treatments. Started chemo March 2013. Had last infusion September 2014. In the mean time I had rads every day for 5 weeks.

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited June 2017

    My guess is that she is HER2 positive. Is this correct? That might explain the lengthier chemo. With HER2 positive you do a year of Herceptin I believe.

    Nancy

  • MTwoman
    MTwoman Member Posts: 2,704
    edited June 2017

    jfe, I am so sorry that you and your wife have had to begin this journey. The beginning is certainly full of new information (that can radically impact the expected course of treatment) and a steep learning curve. It also must be quite hard to have to watch the woman you love go through treatments intended to kill off rapidly multiplying cells (not just the malignant ones).

    There is quite a lot of misinformation on the internet, and when people google for answers, that information tends to spread. I'm not sure where you are getting your information about "a significant percentage of "cancer deaths" are from chemotherapy/side effects being lumped in with cancer itself", but I can't locate anything from a credible source to back that up. On these boards, we are used to citing our reference material when we make a bold claim, such as you have, so that others can read for themselves how a conclusion was reached. I will provide you with a study from the last year which refutes the claim you've made:

    https://www.gov.uk/government/news/new-findings-on-post-chemotherapy-deaths-using-world-first-phe-cancer-data

    This nationwide data set included over 23,000 women diagnosed and treated for breast cancer. Some of the pertinent main findings were: " Most of the people who died within 30 days were receiving palliative treatment (where the cancer cannot be cured and chemotherapy is given to relieve symptoms and improve quality of life): 569 breast cancer patients and 720 lung cancer patients." and " There were also a small number of deaths in those patients given treatment with the intention to cure: 41 breast cancer patients and 53 lung cancer patients." If you happen to have studies or evidence from a credible source to back up your statement, I'd really like to take a look to improve my own knowledge.

    Please see MinusTwo's questions above, as those answers can help women here get you good information based on similar types, stages etc of your wife's breast cancer.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2017

    Hi!

    I agree with Nancy; it sounds like your wife is HER2+. If she is, she won't be getting chemo for eighteen months; she will be getting infusions for eighteen months. Herceptin is NOT chemo! It is a targeted therapy and generally has mild side effects. One downside of Herceptin is that it may cause heart problems. If your wife is slated to receive Herceptin, she should have regular heart scans to make sure that it isn't harming her heart.

    About 25% of breast cancer patients test positive for an overexpression of the protein HER2, which encourages the cancer cells to divide and divide and divide. That's why HER2+ breast cancer is typically Grade 2 or Grade 3 and is considered aggressive. About half of the breast cancer patients who test positive for an overexpression of HER2 also have cancer that is fed by hormones (ER+/PR+). Hence, triple positive BC patients typically get BOTH targeted therapy for the overexpression of HER2 (Herceptin and Perjeta [if tumor is bigger than 2 cm]) and hormonal therapy (Tamoxifen or an aromatase inhibitor) to starve the body of the estrogen that has been contributing to the development of cancer cells.

    In the past, testing positive for an overexpression of HER2 was a bad thing. Only 40% of BC patients who had HER2+ cancer were still alive, five years after diagnosis. However, with the development of targeted therapy (Herceptin and now Perjeta), the survival rates of BC patients who are HER2+ are about the same as for other BC patients. That is to say that over 90% of HER2+ cancer patients who were diagnosed at Stages I and 2 are still alive after five years, and that over 75% of HER2+ cancer patients who were diagnosed at Stage III are still alive after five years.

    The big difference between the HER2+ and HER2- crowds is the length of active treatment. For example, I had five months of chemo (AC + THP), then surgery, then radiation, and then a year of Herceptin after that. It's a marathon, not a sprint.

    Best wishes!

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