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  • pdhwani
    pdhwani Member Posts: 1
    edited August 2017

    hello all,

    My younger sister who is 36 year old diagnosed with triple negative breast cancer , my mom passed away with breast cancer 21 years ago at the age of 44. my sister is under care at Rutgers cancer institute nj under clinical trial phase 2 liposomal doxorubicin & carboplatin . we as family totally shocked when this news came last month as cancer its scary as we lost mom when were small & after this many years its again back . she has 2 small kids age 8 & 10 & she constantly comparing herself with our mom please any advise or any update will be gratly appricaited.

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  • Les123
    Les123 Member Posts: 29
    edited August 2017


    Pdhwani, what stage is she? Did she have surgery? Any lymph nodes positive? I am triple negative to and wasn't ever offered any clinical study.

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  • MakeupLover
    MakeupLover Member Posts: 64
    edited August 2017

    Rebekah! it would be awesome if we were to start treatment at the same time! I'm sorry you aren't feeling well. I recommend relaxing and resting. Hope you feel better soon. Good luck Monday :)

    VL22, thanks for the info! Glad everything went smoothly for you. Why do they give steroids prior to the chemo?

    Pdhwani, I'm sorry for your sister. Like Les123 said, has she gotten biopsied?, what tests have been done so far? once tests are run, a treatment plan will be offered. Tell her to hang in there, keep positive, she's certainly not alone. *hugs*

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  • VL22
    VL22 Member Posts: 851
    edited August 2017

    Makeuplover- I did have steroids in the premeds. I've had trouble sleeping the last two nights and wonder if this might be why.

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    I took a 4 mile walk yesterday and it helped loosen up some of the muscle soreness I experienced post port placement. Still sore, but it's tolerable. Will walk again today.

    MakeupLover, you think you will do DIEP? It sounds like the end result is the best, but I worry about recovery. I haven't met with my PS yet so we'll see what she says.

    VL22 , how are you feeling? is this day 3? Are you on Taxol?


    R

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  • VL22
    VL22 Member Posts: 851
    edited August 2017

    Rebekah - I am doing AC first. Today was rough to be honest. Up at 3am, tossing and turning. Nausea this morning and really felt awful 9am-12pm. Slept for 2 hours and then felt ok. It feels like a bad hang over. For me the trick seems to be just keep taking the nausea meds, 2 of them, and don't get behind. And also make myself eat, because I do feel better. What is surprising is how hard it is to drink water - just do unappetizing


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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    VL22, Oh boy, I hear AC is hard. I will do it too but not till the end I dont think. Hang in there and try to go for a walk if you can manage it. Maybe Gatorade or some suchis better?

    R

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  • Les123
    Les123 Member Posts: 29
    edited August 2017

    my recommendation is to take CBD oil. It comes in all different varieties. You can take it in candy , tincture, gummies or vapor. I didn't have to take nausea medication, painkillers etc.

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  • HeartdesiresLife
    HeartdesiresLife Member Posts: 59
    edited August 2017

    VL22...sorry the AC made you feel so ill. I hope you will be feeling better and better soon.

    Rebekah, wonderful that you are walking even when you are sore. You are one strong cookie!

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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited August 2017

    hi all. I heard from the gyn surgeon Friday that my biopsy came back positive for uterine cancer. It is called a mmm tumor. Very rare very aggressive. There is a tumor on my left ovary also. Scary thing is it was not there in march cause I had a clean Ct scan then. I will need a total hysterectomy plus they need to remove the omentum Of my stomach. Then chemo and vaginal radiation. I go Monday for a chest and abdomen Ct to see if it has spread. If it has then I do chemo first. The type of tumor I have has a shitty survival rate. I am devestated

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  • SuprSurvivr
    SuprSurvivr Member Posts: 139
    edited August 2017

    Shopgal2, I am so sorry you got such news. It sometimes seems like a never ending battle we are waging against our own bodies. But don't give up the fight! It seems to me you caught it early, and you are a strong woman. Never give up. Never stop. Don't let those dang mutating cells win. I'll keep you in my prayers. Strength for the battle ahead! ✨💪🏻🙏🏻

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  • Batesburg
    Batesburg Member Posts: 199
    edited August 2017

    Shopgal,

    I am so sad about your news. I did a quick search on Dr. Google and although it might seem like a terrible prognosis, I did find a site where many women are surviving and thriving. I just wanted to tell you this because there was much discussion on what I read that there is not a lot known about this type of cancer - and there are women out there who have beat it.

    Can't imagine how huge everything feels right now. Please know we are here to keep you focused on positive outcomes- prayers and continued support always.

    Janet

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited August 2017

    Shopgal2....I am also devastated to hear your news! I'm sure you will be hearing from everyone all day to offer support for you. Words are never enough at a time like this so I am sending you love and endless prayers.

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited August 2017

    Shopgal2...like Janet (Batesburg) I also Googled and found a support group for MMMT tumors and read posts from many women years out from diagnosis. I'm sure you will be checking also

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  • HeartdesiresLife
    HeartdesiresLife Member Posts: 59
    edited August 2017

    Shopgal2...without a doubt, you are a strong woman! Along with many others, I will be rooting for you.

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited August 2017

    Shopgal2: Sending strength, love and prayers your way. Were all here to help hold you up and help you climb this huge scary mountain.

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Shopgal -

    I'm so so sorry to hear this. I HATE cancer. Stay strong. I know everyone here will support you as much as we can

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited August 2017

    Shopgal, (((((HUGS)))), I too am sorry to hear your news. I have no words right now but I will put you at the top of my prayer list! We are here for you as always! It's worrisome enough to think about BC coming back but I've personally not really thought about possibility of a new cancer being diagnosed. At least not so soon. I have bleeding off and on too, but my Onc tells me it's normal after chemo! I have my six month checkup tomorrow and will mention it yet again. I'm in no way comparing myself to your situation. So please don't think that. It's just hard to tell what's normal and what isn't! Ugh,cancer sucks!!!!!!

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  • VLH
    VLH Member Posts: 1,258
    edited August 2017

    There's little I can add to the prior supportive comments, but I wanted to say I'm so very sorry, Shopgal2

    Lyn

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  • 6feetover
    6feetover Member Posts: 320
    edited August 2017

    {{{{{{{{{{SHOPGAL}}}}}}}}}}}

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  • ScotBird
    ScotBird Member Posts: 650
    edited August 2017

    Oh Shopgal. I don't know what to say. So sorry about your news. Sending lots of love. There is always hope. XXXXXX

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited August 2017

    Oh no, Shopgal. We all know aggressive cancer, and we are right here behind you to back you up. Yell, cry, scream...and then go get 'em!

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited August 2017

    Shopgal, - That STINKS, - but do what ever you have to do and come out the victor! New and better treatments are always coming out, - so you'll have to find the best one until the better one comes along! We are all here to lend support and offer what ever help, advice, etc we can.

    Hugs from NYC

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  • DiV
    DiV Member Posts: 231
    edited August 2017

    Shopgal I am so sorry. Like all the others I'm praying for you. Stay strong and positive.

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  • Trishyla
    Trishyla Member Posts: 1,005
    edited August 2017

    Hey DiV!

    Nice to see you. Hope you're doing well.

    Trish

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  • MakeupLover
    MakeupLover Member Posts: 64
    edited August 2017

    Shopgal, I'm so sorry for your terrible news! Please stay strong and fight this like a champ. My husband's cousin had cervical cancer and she had a hysterectomy first. The cancer came back, doctor told her she had a very aggressive cancer. Basically told her she had 6 months to live if she didn't get a total pelvic exenteration. She did the surgery and thank goodness, her cancer hasn't come back. It's been a few years now, I want to say maybe 3 or 4 years. So there is hope for you!

    I met with my oncologist today and he wants to start chemo ASAP. I go for a port placement and echo sometime this week. I potentially start chemo next Monday. My oncologist wants to do AC followed by Carboplatin and Taxol.

    I have the fertility doctor appointment this Tuesday morning and if they can't do whatever they need to do within a week, sadly I'll have to forego freezing my eggs and just getting chemo right away. My oncologist was very adamant about starting as soon as possible, but he said to go see the fertility doctor anyway, because he doesn't want to nor should he make that decision for me.

    Rebekah, I see you start chemo soon, best of luck!

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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited August 2017

    I am overwhelmed all by your kind words of comfort. I cried reading them. I feel as though someone punched a hole in me. My ptsd from treatment last year is back and I've been living on Xanax since Friday.

    Today I had my Ct scan of my chest and abdomen to check if the cancer has spread from my uterus to my organs. Thankfully they had a clean abdomen Ct that I had in march to compare it to and I also had a chest Ct from October as a baseline. Thankfully no mets, just the rare and very aggressive mmmt tumor cells in my uterus and the mass on my left ovary.

    Now I am trying to get an appt at penn medicine in philly for a second opinion before a followup with my jefferson surgeon on tues to outline his treatment plan. The doc at Jefferson wants to do the surgery on 8/31. I just want to make sure he's the right fit for me as a doc. I wasn't happy that he got the results of my ultrasound back the day I got it on 7/31 and never told me the results until the day of my biopsy/d& c surgery last mon 8/7 . And on fri when I called him he said he wasn't going to call me until this Monday after the weekend to tell me the results of the biopsy. He said because I called him he had to tell me. He was getting ready to go on vacation this week but would be in the area to give me the results of my Ct scans today. But today he dictated the results to his medical assistant who called to tell me what he said. So that ladies is why I'm seeking a second opinion on a treatment plan. After dealing with tn I need to find the best doc and team that will advocate for me. Sometimes these docs get too caught up with focusing on the medicine and forget we are people. I swear I must have nagged my mo last year at my 3mo pfc and 7 mo pfc appt so much about was blood work needed for tumor markers or with asking if I was a candidate for xeloda or even what new meds or immunotherapy was new for tn. I even asked if I needed scans to monitor for possible reoccurrence. Each time I was told no. I finally had my ro do tumor markers in dec because she couldn't believe my mo hadn't done bloods since I finished chemo the year before. Plus no one ever told me to get my ovaries, tubes, or uterus out. In fact when I saw my mo right before he referred me to the gynelogic oncologist he thought my ovaries were waking up after chemo. Hah they did but awakened to produce cancer cells.

    For thos just out of treatment push back hard on your team and insist on what you need. This time I will be louder and won't stop until I get the right docs.

    Sucks to have a second cancer right now. I was just starting to enjoy being fearless again. My worst fear that we all have has come to fruition. It is back in a big scary way. I hope I'm strong enough again to make it thru.

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  • MakeupLover
    MakeupLover Member Posts: 64
    edited August 2017

    Shopgal *hugs*

    stay strong, it has to be tough getting this news. just hang in there, you WILL get through this! sending positive vibes!

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  • placid44
    placid44 Member Posts: 497
    edited August 2017

    Shopgal,

    I am so sorry! If it helps at all,I found this thread about MMMT/treatment teams and recommendations on the ACS Cancer survivors network.

    https://csn.cancer.org/node/304695


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  • placid44
    placid44 Member Posts: 497
    edited August 2017

    And this...

    https://gynommmt.wordpress.com/resources/


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