Second recurrence in two years. Just had the surgery

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goose14
goose14 Member Posts: 17

I'm new here. I was dxed with TNBC in 2014 and had a lumpectomy. Went thru chemo and radiation first time around. Then last June 2015 I had my first recurrence, had left modified radical mastectomy and right simple mastectomy, so I wouldn't look lopsided, get back problems and not get cancer on that side. Went through chemo and radiation again. When chemo ended in january 2016, two weeks later I had a new tumor, dr wanted to put me thru radiation and wouldn't let me get it surgically removed.. The radiation didn't work even though it was a lifetime dosage of radiation. Yesterday I had the tumor removed. I have a 3 inch incision just below my collarbone starting at my shoulder joint and going towards my breastbone. I know the medical oncologist will say chemo again... Not sure I want it but if I don't I know it is a death sentence. I have lost my appetite and am very fatiqued. We did thryoid hormone testing to rule out a thyroid problem because i just went thru thryoid cancer screening. That tumor was not cancerous but a colloid nodule. I am tired of doctors. I have a psych disorder and I'm afraid the stress of the last two years has begun to sink me into depression. I see my psych in july. I just don't want to go thru chemo again. I went thru cytoxin and taxotere the first year, this second year I went thru cytoxin, adrimyacin and taxol... The steroid meds they put me on sent my blood sugars up into the 300 range on the meter. Nothing they could do about but wait it out. It also made me very constipated which I am still trying to get over. Also, my white blood count and platelet count are still low from chemo this 2nd time around. they are not coming up to normal range... This has me concerned also. Chemo ended january 15, 2016... Shouldn't my blood counts be up to normal by now?? If they are as low as they are right now, what will the 3rd round of chemo do to them??? What other chemo drugs are out there besides the ones that i have already gone through?? I see my medical oncologist next week to go over the pathology report. I am so tired and fatiqued and not hungry... My hair is about 1 inch long now and thinking about losing it again, is not setting well with me... I have searched the internet for life expectency for 2nd reccurence of triple negative and not coming up with any info. I'm also not finding out what chemo drugs work with triple negative that I haven't already tried. I'm frustrated and getting stressed out... Why me????

Comments

  • KBeee
    KBeee Member Posts: 5,109
    edited July 2016

    I am sorry you are dealing with another recurrence. With triple negative, they will likely recommend chemo. There are options. If you have not had s second opinion at s major medical center, it would be good to. You may be able to get into clinical trials, etc

  • LM070917
    LM070917 Member Posts: 323
    edited July 2016

    Hey Goose14, so sorry to hear about your recurrence, but don't give up hope! What about immunotherapy? I agree with KBeeeI would ask your oncologist about trials which use treatments other than chemo and rads.

  • goose14
    goose14 Member Posts: 17
    edited July 2016

    I see the oncologist (medical), on Tuesday to go over the pathology report. And next Friday I get my genetic testing results also. My oncologist may already have my genetic testing results but the genetic counselor wants to talk to me. So, hoping it is good news. I will also ask my oncologist about clinical trials, immunotherapy. My oncologist is retiring at the end of the year, so not sure what is going to happen with me as far as getting another oncologist. There are several to chose from at my cancer center. But that is down the road a bit. Have to take it one day at a time.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    goose - so sorry you have had recurrence issues, has to be scary for you. You might check out CMF (Cyclophosphamide/Methotrexate/Fluorouracil) - it is an old regimen but is now seeing a resurgence in use for TNBC - link below, but it is easy to find info if you Google "CMF and triple negative." It has the added benefit of not obliterating your hair - for most, it may thin it a bit. Also, some centers are adding Carboplatin for TN patients.

    http://jco.ascopubs.org/content/early/2010/05/10/JCO.2009.25.9549

    Also, here is the BCO thread for CMF:

    https://community.breastcancer.org/forum/6/topics/243424?page=1

    On the subject of blood counts - it is not unusual to take more than six months for your counts to normalize, and some people stay on the low end of the range somewhat permanently - I definitely did. Also, important to note that blood count ranges were actually developed for adult men, so it is common for women to be on the lower end of the range due to size differential.

  • fifthyear
    fifthyear Member Posts: 225
    edited July 2016

    Goose, so sorry you are going through this. Sending you hugs

  • Penni1950
    Penni1950 Member Posts: 5
    edited October 2016

    For my triple neg recurrence, I've opted for Xeloda, off-label use as it's for colon cancer. Just started because I had a drain in for three MONTHS! Believe me, I know the stress you're gong thru.

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