2017 Diagnosed-- A Place To Share "What's Next"

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited January 2018

    OCDAmy—. You selected PALLAS over SWOG-S1207, right?

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    Dodgers, they didn't mention that as a trial they are doing. Are you in that trial for sure? They offered the one with taking an aspirin every day but heck I can do that myself. My MO suggested taking a baby aspirin daily.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited January 2018

    OCDAmy- as long as I pass the blood work and sign the forms I will be in the SWOG trial. Everolimus or a placebo daily for 54 weeks... randomized blind trial. Suspect I will know if on daily chemo from mouth sores

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  • Annbee
    Annbee Member Posts: 208
    edited January 2018
    Hi Dodgergirl, may I ask a question? What is your trial for? I am stage 3a and had the same treatments as you. Just curious. I am not always on here now with trying to keep up with teaching. Still fighting fatigue.
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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited January 2018

    Annbee, Norvantis is testing Everolimus (chemo drug in pill form) when taken with AI to see if it improves odds for recurrence or metastasis. It’s a stage 3 Trial. Everolimus (Afinitor) is a Stage 4 drug but the thought is Everolimus would increase the effectiveness of the AI. I don’t know if I will get the real Everolimus or a placebo but thinking it if helps keep me NED, I gotta give it a try

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  • Annbee
    Annbee Member Posts: 208
    edited January 2018

    Thanks Dodgergirl. I totally understand. Do everything we can to stay NED. I think I may call my MO on Monday to find out if it is something I should be doing. I don’t see her till March.I heard “aggressive” more than once when referring to my cancer over the past year. I am on Letrozole now and wonder is it enough. Not sure I want SE’s though.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited January 2018

    Annbee— it’s the SE possibility that I keep going back to. Sure don’t want a year of chemo SE but if it gives me a better long term possibility, I think I have to do this. No guarantee that I will get the drug, could get a placebo drug AND you can drop out if SE are not tolerable. Plus, hoping this trial will help BC warriors down the road

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    Dodgers, what are the side effects? They told me that Ibrance has been fairly well tolerated and if the trial dosage is too high they can reduce it. Most common SE is low white blood cell count.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited January 2018

    OCDAmy— common side effects are mostly mouth sores and/or rash. There is a coupon from the drug company to off set cost for a mouthwash, if you get sores. They have to monitor lipids and sugar as some people see large jump in cholesterol and/or blood sugar. Like most chemo, we expect lower hemoglobin numbers, lower WBC, lower platelets, etc

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  • Annbee
    Annbee Member Posts: 208
    edited January 2018

    Mouth sores and rash seem doable after all we have been through. My husband wants me to talk with my MO too. Being able to drop out is fair. Thanks Dodgers Girl and others.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited January 2018

    Annbee— if you look online for SWOG-S1207, there is patient PDF that answers a lot of questions. They are taking people through June, hormone positive, stage 2 and stage 3.

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  • Annbee
    Annbee Member Posts: 208
    edited January 2018

    Thank you!

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited January 2018

    sure got quiet. Hope that means everyone is getting on with their life after treatments?

    I recently got my prosthesis and today went to breakfast with hubby. It’s the first time since mastectomy that I could be out in public and feel like I looked normal. But it was surreal to notice all the people at their tables who seemed to just being enjoying life.... no worries about recurrences or spreading cancer. My world will never be the same so I just have to make the best of each day.

    Had labs this morning for an upcoming surgery—— 4th in less than a year. Will have robotic hysterectomy and ovaries removal in Feb. Was told by surgeon that she will take some lymph nodes to be sure there’s no cancer. That statement took me back to diagnostic mammo/ultra sound/biopsies days. Will be glad when this is all over

    Hoping you guys are all doing ok.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2018

    Dodgers, Do you mind if I ask how you and your doctor(s) came to the conclusion about you needing the hysterectomy and ovary removal? We are qute similar in staging, though I don't see your node involvement, nor if you are on any AI meds. Perhaps you don't need to be based on age? I turned 50 during chemo. Maybe this is something you have already addressed, so I can go back and check when I have time. Getting through my rads, which is my last major treatment other than the AI for what will feel like an eternity... I think I need a nap today. :)

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited January 2018

    Hey Dodgers:

    I've decided -- and this isn't a totally negative statement -- that having cancer is lonely. I look around while out, too, and think the same thing you do. Everyone is just going on with their lives like nothing happened. And maybe nothing did in theirs. But we're completely changed. Feels a little lonely to me.

    Another surgery. Sigh. I know you're sick of this. Keep us updated on everything.

    Doing ok here. Prolia and Lupron entering my life soon. What joy!!! :)

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited January 2018

    KimPossible818 — when first diagnosed, I had a PET to make sure I wasn’t Stage 4. There was uptick in my uterus. I had just started AC chemo and didn’t want to stop that for a hysterectomy then. So doctor did a D&C instead. Pathology found no cancer but did find complex atypical hyperplasia which can become cancer. The plan was then set to schedule a hysterectomy when done with rads. I am not yet menopausal so had been getting monthly goserelin shots to shut down ovaries so that could be prescribed AI instead of Tamoxifen.... so ovaries will come out, too.

    I had another PET in Sept. Showed NO uptake in uterus at all now so hoping the lymph nodes are clear and all of that will be behind me. Hoping!!!

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited January 2018

    EastcoastTS- lonely... that does describe it. I have great family, friends, job, etc but do feel like BC is the 800 lb gorilla in every room I walk into. Hoping the concerns about cancer coming back diminishes with time as normal life events return and fill my days.

    Good luck with Prolia and Lupron!

    I am taking Anastrozole and will soon become part of a clinical trial for Everolimus for 54 weeks

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  • Annbee
    Annbee Member Posts: 208
    edited January 2018

    I so understand the loney part. I work with a teacher who went through this about 5 years ago. I even had this conversation with her. It must be a part of cancer treatments.

    I spoke with my MO and she referred my file to research for the Phase III trial. I felt kinda like “you mean I qualify?” Hoping in a way I wound not have.
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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    DodgersGirl, best wishes for your upcoming surgery. Praying that nothing in your lymph nodes.

    Yes I agreed Cancer is lonely, I have been going out to eat lunch lately, I asked myself how can I let go this Cancer feeling. I feel there is weight upon me that I can’t lift. Hopefully things will be easier but I will always afraid to do test, ultrasound or scan. Life is not the same anymore.

    I hope everyone are having a good week.


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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited February 2018

    PauletteK— thanks for the prayers. After all I have been through, I know I can do the surgery and healing. .... but anxiety is there about pathol

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited February 2018

    Annbee- fully understand the feeling about being considered for that trial ... it’s exactly how I felt when MO said she put me in for it. Realistically thinking (easier said than done sometimes), I want to do whatever I can to stay NED!

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  • TaRenee
    TaRenee Member Posts: 464
    edited February 2018

    Dodgers- I will be praying for good results and easy recovery for your surgery. Hope all goes well and clean pathology.

    Today at work I had a MASSIVE Hot Flash. I was at my desk working on grades and plans for tomorrow and all of a sudden my hair is wet, my back is wet, I felt like I had been working outside in the middle of July. It was awful. I went outside to the glorious 40 temps and it didn’t help. I mean, it felt good, but I was still hot as the 3rd circle of Dante’s Inferno. I had class in a few minutes so I went back inside and opened the windows. The kids came in and were all “ Are you ok? You look all red faced” I wanted to cry. It lasted a good 15 minutes. I thought it wasn’t supposed to be a FLASH for crying out loud. So by the time I got home 3 hours later I was ready for a shower!


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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited February 2018

    TaRenee— thanks for the prayers!

    Oh my... that sounds like monster hot flash. Hoping all your hot flashes joined together to make one big flash and then be done.

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  • TaRenee
    TaRenee Member Posts: 464
    edited February 2018

    Me too

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  • VL22
    VL22 Member Posts: 851
    edited February 2018

    Lonely/ that is exactly the word to describe it. It comes over me at odd times - while at a football party or lying alone in bed. I have great family and friends, but I don’t share all of my emotions with them - they can’t understand and it feels like burdening them.

    At this point it is always in the room - when I open my eyes and when I close them.

    My husband said to me last night that he was thinking of people we've known who’ve had breast cancer and everything is ok now. He mentioned a woman he once worked with who had breast cancer over 20 years ago. And in my head I think “but will that be me?” I did not say aloud and I don’t think I should have, but this is where the loneliness lives

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  • Rhyfelwr
    Rhyfelwr Member Posts: 88
    edited February 2018

    VL22, I sometimes think about all the people who have had bc and "gotten over it" and I wonder what that is like. I feel as if something really traumatic has happened, and I can't imagine it not being something I am dealing with in my life. And while I am still feeling so crappy, I kind of resist people telling me, 'See, you are doing GREAT!" because it makes me feel as if I should be "over it", and I am not. Not yet.

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  • Roaming_Star
    Roaming_Star Member Posts: 103
    edited February 2018

    Hello ladies, thought I would join this group. It is lonely and I am scared. Some relatives that I have tried to talk to them about my fears of dying say - well all of us are going to die, we could walk outside the house and get hit by a bus.... I didn't find it very comforting. I feel as though I got this thing that lives inside me - this monster and I don't know when, how or if it is going to kill me.

    My whole cancer treatment has been such a fucking roller coaster ride. So many downs- not so many ups. I still have rads to go. I start next week. MO and I disagree on the effectiveness of chemo. There was a lot of cancer in the vascular systen surrounding my cancerous lymph nodes after surgery. I felt that if I would have known that chemo is rarely effective on very high scoring hormone positive bc that I would have elected for surgery first. I read studies that show that chemo can shrink the original tumour but push cancer cells into near by areas such as the lymphatic system were they just regrow. It also allows more cancer cells to spread around your body. What a fucking mess. And then I have my MO saying maybe I should change to another MO all because I asked questions whether the treatment plan was wrong from the beginning! I live in Canada so there is only one treatment centre for our area. They ALL follow the same treatment guidelines so I think it really doesn't matter who is treating me as they all have to abide by the same protocols. I do have some rapport with him so I just didn't want to start all over with another person. But it's made me feel even more distrusting, isolated, vulnerable, and down right miserable.

    As well as soon as you are done treatment here the MO does not follow you, the GP does, so as soon as I am done with rads and receive my hormone treatment perscription I am out the door. It is like, "well good luck with that - have a nice life." I feel like my head is spinning. Now I am supposed to go back to regular life. The only problem is I lost my home and my business the year before my diagnosis (which I think the stress caused the cancer). I had started to go back to school for retraining but when I got diagnosed, I left school as I was also looking after my mentally ill, alcoholic mom who has dementia as well. So I could not do treatments, go to school full time and look after my mom. Now I am like well do I go back to school? Do I get a job all the while thinking is this cancer going to come back and how long do I got to live? Fuck it just sucks.

    Sorry ladies for such a long post. I just got too much shit going on inside.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited February 2018

    Roaming Star— sorry you have to go thru all of this but glad you found us! To me, this thread is designed for us to have a place to share as we go thru treatments and figure out how to return to a changed life.

    I wish I had answers for you. Just can tell you that I relate to your story in that my family is really pissed that I didn’t have surgery first as chemo killed some but not all of the cancer before surgery so I had many months after dx where cancer was continuing its activities as it wanted. MO following the safe NCCN protocol path. I am very aware that cancer can return and does in some of us. I try to live in the moment and enjoy today and let tomorrow handle itself. Sometimes that is easy to do but not always. In my case, DH had heart attack and was close to dying during my chemo so I do understand the “anyone can get hit by a bus” line BUT once we have been dx’d with cancer, it is more like we are walking in the road and could get hit by a bus than healthy people who are walking on the sidewalk.

    I hope you find a path that is right for you and hope you will post here as needed. Cancer is lonely but sharing with others in similar boats sure seems to help me cope and deal.

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  • Roaming_Star
    Roaming_Star Member Posts: 103
    edited February 2018

    Thank you DodgersGirl for your kind words. I am glad someone else is mad about having chemo first rather than surgery. Your response has helped me today :-)

    Forgive my lack of acronym knowledge - who is DH?

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited February 2018

    Roaming Star—. DH is dear husband

    DD dear daughter. DS dear son Etc

    MOs will say that an advantage to having chemo first (beyond trying to shrink a tumor before surgery) spring first hand of a chemo worked on your tumor. Chemo did kill some of my cancer but not all like what seems to happen more in triple negative BC. I think the AC did the most damage and not sure Taxol did anything other than side effects I still deal with. Sure makes me hope the AI does its thing so I can continue on NED!!

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