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Starting chemo July 2014

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Comments

  • elainetherese
    elainetherese Member Posts: 1,624

    kmntwins,

    Thanks for sharing the good news about pinkninja! I pray that her situation stabilizes even if she doesn't quite reach NED.

    Regarding the Breast Cancer Index test, see: https://www.breastcancer.org/symptoms/testing/types/breast-cancer-index-test

    According to that article, "You may be eligible for the Breast Cancer Index test if:

    you were diagnosed with early-stage (stage I-III) breast cancer

    the cancer was hormone-receptor-positive and HER2-negative

    there was no cancer in your lymph nodes (lymph node-negative disease)

    you've been taking hormonal therapy for 4 to 5 years and want to know if taking hormonal therapy for more time will be beneficial"

    Well, I was HER2+ as well, plus I had cancer in one node, so I don't seem to be eligible. Plus, it isn't approved yet by the FDA, so my insurance might not pay for it anyways.

    Good luck with your uterine biopsy results! Ugh about the bleeding.

  • knmtwins
    knmtwins Member Posts: 437

    Hi ladies - I have cancer. Well, I had some spotting and had a uterine biopsy biopsied and the results are "SEROUS CARCINOMA". Yes, I'm on Tamoxifen. Wonder if that is part of the problem. My gyn wants me to see a gynocologic oncologist... of course I had to leave a message with them and my normal oncologist, who I LOVE, is out to lunch. I know nothing... oh where do I even start. Is there anything as wonderful as BreastCancer.org for other cancers. Crap, Shit and Fuck! Sorry, I just needed to cuss!!!! My kids are home from school due to snow, my husband is sleeping, because he works nights. Damn, what does this mean.

  • elainetherese
    elainetherese Member Posts: 1,624

    Oh kmntwins. Ugh. Does that mean you have endometrial cancer or uterine cancer or are those the same thing?

    I don't know of a similar site for other cancers, but I'm sure they're out there. Yes, cuss away! ((Hugs))

  • ladyb1234
    ladyb1234 Member Posts: 1,237

    Thanks for sharing the good news about pinkninja! let her know continuous prayers for her recovery.

    I have been following this thread since joining the site. Mags was one of my first encouragers and she encouraged me to start the August 2014 thread and we drew close. Loosing her was hard to hear as we were on several threads together and I do miss her on the boards.


    Kmtwins, as ElaineTherse says “UGH". Hugs

  • knmtwins
    knmtwins Member Posts: 437

    Oh and the PAP just showed up, Adenocarcinoma... Elaine There, I'll always call you that :-), I have no clue. I was really good at all that breast cancer stuff. I did a lot of research, but I'm only about 2 hours into this. I'm going to see a gynocological oncologist on Valentine's Day, and see what they have to say. Seems, from quick research, the serous carcinoma is a bad one, as "...40% with stage I disease die of disease". WHAT????

    As to this Adenocarcinoma, which showed up on the PAP, seems that is on the 'gland cells'. At the risk of repeating myself... WHAT????????

    I mean, really, who gets 3 different types of cancer in less than 5 years and 2 at the same time. So, for me the questions are, treatment, life expectancy, and most important, is this something I may have passed to my 3 lovely children. Cancer SUCKS!!!

  • elainetherese
    elainetherese Member Posts: 1,624

    kmntwins,

    Well, that sucks. (I know, that's an understatement.) One thing I've learned from this site is that lots of survival rates on the internet reflect old data and not the most recent studies. There are so many BC patients on the Stage IV threads who thought they'd have a few years to live but have survived way past that.

    Please keep us up to date and let us know what the gyn onc says, especially about whether Tamoxifen might have played a role. I'd bet that a lot of Tamoxifen users might be interested in your situation.

  • nancy2581
    nancy2581 Member Posts: 407

    knmtwins I am so sorry to read this. I had to stop tamoxifen because I had abnormal paps which I never had. Ended up with cervical biopsy, uterine biopsy and finally a D&C. I do wonder about tamoxifen causing cancer because I've been off of it for over a year now and back in October I finally had a normal paps smear again. If you have uterine cancer can't they just do a complete hysterectomy and get rid of everything? I hope they can and I'm sorry this has happened to you. Having cancer one time is bad enough. Hugs to you my friend. Please keep us updated.

    And I wonder about bone thinning. In April I broke my toe ugh and in the middle of December I broke my wrist and it was a nasty break with that one. Had to have surgery and a plate put in. My wrist is still not the same and I will be starting physical therapy next week. I'm in my 50"s and feel like this decade sucks.

    Anyway Rachel (pink ninja) is home and even posted on FB. She is an inspiration to us all.

    Nancy


  • elainetherese
    elainetherese Member Posts: 1,624

    Nancy,

    Ugh about the broken toe and wrist! Did you have a baseline dexa-scan before starting Femara?

  • nancy2581
    nancy2581 Member Posts: 407

    Hi Elaine - yes I did and it only showed osteopenia in my left hip (I think), but the wrist break was a year after I started femara so who knows since I won't have a dexa scan until next December. How are you doing?

    Nancy

  • elainetherese
    elainetherese Member Posts: 1,624

    I'm doing well, Nancy, thanks for asking. I'm due a dexa scan soon; I hope it shows that Prolia has been doing its job. I'll be taking a Zoladex vacation soon, and then MO will test to see whether I'm menopausal. If I am, it's bye-bye Zoladex. (I'm sure my insurance company can't wait -- those shots are expensive.) I'm still working on losing weight; I joined a group where we try to encourage each other to eat better and exercise.

    I hope that physical therapy helps you regain strength and function in your wrist. That sounds like a sucky injury.


  • knmtwins
    knmtwins Member Posts: 437

    Nancy2581 I don't think I answered your question, about can't I just do a hysterectomy. Yes, but this is a rare and aggressive form, called Serous Carcinoma, so even stage 1A, seems to have chemo and radiation recommended. Really, first Her2, must have chemo, now Serous Carcinoma, must have chemo. YUCK!

  • Slappy-Squirrel
    Slappy-Squirrel Member Posts: 199

    sorry to hear this. You are in my prayers knmtwins. Shirley


  • puffin2014
    puffin2014 Member Posts: 915

    knmtwins: I've been on vacation and haven't checked in lately. I'm so very sorry about your new diagnosis.The American Cancer Society has a web site called Cancer Survivors Network/CSN <https://csn.cancer.org&gt; that I was active on during treatment. There are 2 parts to the web site, Discussion boards for each specific type of cancer that you can post questions on. There is also the CSN Chatroom which is real time, a place to ask questions or just get live support with other survivors. I used the chatroom a lot when I was awake at 3 am from my chemo steroids.Try different times of the day to see when it's most active.



  • nancy2581
    nancy2581 Member Posts: 407

    Have been thinking about you knmtwins. Please let us know how you are doing when you can. Hugs

    Nancy

  • knmtwins
    knmtwins Member Posts: 437

    Thank you all for your thoughts and kind words. I go tomorrow and am getting scared. What item are you happy you had, at the hospital, when recovering or wish you had taken with you? For us, the #1 was cell phone chargers, my husband's phone died during the long surgery, so he used mine... when I woke up and wanted to call the kids, no phone.

  • elainetherese
    elainetherese Member Posts: 1,624

    kmntwins,

    When I was in the hospital for gallbladder surgery, I wish I had brought a warm blanket from home. The hospital sheet and "blanket" weren't very cozy. Best wishes for a successful hysterectomy. Will your surgery entail anything else? Take it easy, and know that we're in your corner, wishing you the very best.

  • knmtwins
    knmtwins Member Posts: 437

    Good point, warm blanket, they are flimsy in the hospital, aren't they? Elaine Theresa, what do you mean by 'anything else'? It will be a total hysterectomy, done laperscopically using the DaVinci computerized system, it will include a sentinel node biopsy and he will take some random ones in the abdomen just to be on the safe side.. They will grab everything, put it in a bag and pull it out through the vagina.

    The big worry is that this is Serous Carcinoma, which is VERY aggressive. They will stage me once the surgery and pathology are back, but I don't think it matters, I think even Stage 1A, gets carboplatin, taxol and radiation.

  • elainetherese
    elainetherese Member Posts: 1,624

    I guess I meant lymph nodes, which it looks like the surgeon will be taking (in small quantities). More chemo! Ugh.

  • nancy2581
    nancy2581 Member Posts: 407

    Glad to hear from you knmtwins. I hope your surgery goes well. We will be thinking of you. I'm sorry you're facing more chemo, but I hope it can beat the heck out of the cancer. More hugs to you.

    Nancy

  • knmtwins
    knmtwins Member Posts: 437

    So surgery went well, and I was able to leave the hospital the next day. I had a DaVinci laproscopic total hysterectomy. The surgeon, who is head of their Gynocologic Oncology division, said it is moderate, I questioned him 3 times as to what is moderate. He finally said 5cm of cancer and that what they needed to take out, was too big for my vaginal opening, so, yea me, I got an episiotomy. Lovely. He will call me sometime next week with the pathology and staging info and then who knows. My oncologist said to just stop by her office on my way home from this appointment, but he is calling me, so there won't be an appointment.

    Pink took a shower by herself the other day. She is thrilled!

    Love all of you - Kay

  • dancingdiva
    dancingdiva Member Posts: 317

    KNMtwins,

    hugs girlie!!! I"m glad surgery went well! xox DD

  • elainetherese
    elainetherese Member Posts: 1,624

    kmntwins,

    Glad to hear that your surgery went well! Praying that you're early stage and your nodes were clear.

  • knmtwins
    knmtwins Member Posts: 437

    I love you girls so much!!! The waiting is the hardest part!

  • nancy2581
    nancy2581 Member Posts: 407

    so happy to hear from you Kay. Glad your surgery went well. Hoping your pathology comes back not so bad and you can kick this in the butt once and for all. And yeah the waiting is awful. Hugs to you ❤️

    Nancy

  • puffin2014
    puffin2014 Member Posts: 915

    Good to hear surgery went well, sending {{{hugs}}}

  • knmtwins
    knmtwins Member Posts: 437

    Sorry I haven't been on, but (think child birth) I tore when they tried to remove my 'lady parts' through my vagina and got an episiotomy. Sitting has been unbearable, and the laptop pushing into my tummy was just too much to think of, so I haven't been on-line much. So, good news is the cancer was ONLY inside my uterus, and ONLY a tiny bit into the myometrium (muscle inside uterus right below the endometrium), so I'm staged 1A. Bad news is this is an aggressive form of cancer which they treat as if it was ovarian cancer, so I met with my oncologist on Thursday, had my port put in on Friday and start chemo on Wednesday. It will be Taxol and Carboplatin, every 3 weeks for 6 cycles. I will also need to do rads, probably just a few internal brachy treatments, but who knows, I haven't even seen my surgeon (gynocologic oncologist) yet for my followup. I have stopped Tamoxifen, because I no longer have overies and will start an AI after chemo. I'm not sure what the hormone status is of the tumor, but it was NOT Her2+.

  • knmtwins
    knmtwins Member Posts: 437

    Anyone do Taxol and Carboplatin every 3 weeks??? I hear when done this way Taxol is Taxotere's evil step sister. YIKES!!! I'd love to hear what your secrets are and what I need to go purchase to help. My MO says to get L-Glutamine.


  • elainetherese
    elainetherese Member Posts: 1,624

    Hi kmntwins!

    Thanks so much for the update! I'm so glad to hear that your cancer is concentrated in your uterus. I personally never did L-Glutamine, but Special K on the Triple Positive Board is the L-Glutamine queen. To avoid neuropathy, she took L-Glutamine (30g a day, in three 10g servings dissolved in a cold, non-acidic drink - it is tasteless), and a B6 daily throughout chemo. She also iced, which some MOs like and others don't.

    I did Taxol, and got a little neuropathy in my fingertips. Taxol also gave me diarrhea on Day #3, so I quickly became a fan of Imodium. Every three weeks -- will it be more concentrated than the weekly doses? I think one of the concerns about Taxol (and Taxotere) is allergic reactions. That's why I took dexamethasone the night before and the morning of my Taxol infusions. Of course, dexamethasone is a steroid, and can interfere with your sleeping. My MO gave me sleep aids to help with dexa-insomnia.

    I'm thinking that because you tolerated Taxotere, you should probably do OK on Taxol, in terms of allergic reactions.

    Ugh about not being able to sit..... I remember that part of post-partum life very well.

    Is this your second port? Was it hard to get another one in? I still have mine, and have been debating about whether or not to have it removed.

    Hope you can sit better soon, and that chemo goes smoothly for you. Thinking of and praying for you often!

  • nancy2581
    nancy2581 Member Posts: 407

    Hi kmntwins. So glad to hear from you. Really glad that nasty cancer was confined to your uterus. Hooray. I also did taxol. I started with taxotere and did not handle that well so my MO switched to Taxol. I had no problem with it other than my WBC dropped once or twice so they gave me neupogene (I think that's it - it wasn't neulasta). I also did L-Glutamine. I didn't get any neuropathy thankfully. Don't know if it was from the L-Glutamine or not, but I faithfully took it just like ElaineTherese mentioned above.

    I'm sorry you have to do chemo again. So not fair. I'm glad you're not taking tamoxifen anymore. They say it's a slim chance one develops cancer from it, but I wonder. It really caused me a lot of problems when I took it. I'm on femara now and have been for about 15 months. Haven't really had any side effects except my hair is pretty thin.

    We are all routing for you. I hope chemo goes well. Hang in there.

    Nancy

  • knmtwins
    knmtwins Member Posts: 437

    Nancy my hair is about 30% of what it was pre chemo, and tamoxifen. fortunately, it was super thick to begin with. It actually is down to my waist now, at least for this week, I'm getting it cut super short next Saturday, if I'm up for it. As to tamoxifen and uterine cancer, I don't think my type is effected by tamoxifen, I think that is for the 'normal' endometrial.

    Elainethere :-) I think it is stronger every 3 weeks because they want me to take 5 steroid pills the night before and 5 the morning of and then of course it is in the pre-chemo cocktail too. If I did it every 2 weeks,it is only 3 pills night before and 3 day of. yucK... starting to get real, chances are I'll be taking anti anxiety meds to sleep. Stupid cancer