TRIPLE POSITIVE GROUP

19179189209229231334

Comments

  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2015

    SDCA - glad you found a situation that is comforting to you, that is so important.

  • lago
    lago Member Posts: 17,186
    edited August 2015

    I too wasn't treated at an NCI center. The of top 3 places IMO in the city of Chicago only 1 wasn't an NCI center but the reputation of the BS and MO with the MO's area of study being HER2+ since the 90's it was the right choice for me. My neighbor who was diagnosed right after me, triple positive, Stage IIIB also had the same team. She too is still NED.

    SDCA76 I would have done the same thing if Perjeta was offered back then. I even asked about getting chemo first but was told for big tumors (and thinks to self, mine isn't big?)

  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited August 2015

    I am scheduled for a year of perjeta if my heart stays strong enough. It is because I am in a clinical trial bring conducted by my cardiologist at Sloan Kettering in NYC that has me driving 5 hours round trip for treatment. I just went back on Femara today after a 2 week vacation to se if it would make any difference in my joint pain. It didn't. Love, Jean

  • edwsmom
    edwsmom Member Posts: 346
    edited August 2015

    Thanks everyone!

    I had a good cry last night. I think I'm most scared of two things - the impact this will have on my child (2 yo) and the impact of the treatments on me/my body.

    I'm still in total limbo so I have no treatment plan and a potential occult cancer. PET scan tomorrow morning. Second biopsy/MRI on Monday. Then maybe there will be some idea of where to go.

  • Gretagirl
    Gretagirl Member Posts: 182
    edited August 2015

    Edwsmom hang in there and breathe. This will all fall together and you will have a plan of treatment which believe it or not helped me calm down some. Stay connected here this is wonderful group

  • KateB79
    KateB79 Member Posts: 747
    edited August 2015

    Edwsmom, I hear you about the good cry. Most of yesterday was my good cry.

    I finally put a call in to the doc. I can't keep feeling this anxious and almost-depressed--it's just not me.

    In the wise words of an old friend of mine, "this too will pass like a kidney stone." But, in the meantime, I'm sucking up my pride and asking for help with my crazy emotions.

  • lago
    lago Member Posts: 17,186
    edited August 2015

    edwsmom the beginning is the worst part. So scary. You are only afraid of the unknown. I know I found my treatment a lot easier than I thought it would be. You'll get through it. Your child will too.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2015

    edswmom and Kate,

    There's no shame in asking for some help, either from a counselor or from your MO, who can prescribe you anti-anxiety meds or antidepressants. I have anti-anxiety meds for emergencies, and take a daily antidepressant. I was never a med person before but I am now.

  • rozem
    rozem Member Posts: 1,375
    edited August 2015

    hi Ladies

    I was going to start a new topic but always feel like I get more advice and support right here on this thread!

    so I have a new job opportunity...it would be as a free agent (so basically self employed) with a guaranteed base similar to my current salary with a nice bonus structure. Issue is that being that it will be a self employed or contract position there is no long term disability coverage like I get here at work. I know its morbid thinking but if I become terminally ill this worries me. The other part of me thinks if that happens who gives a cr**p and my family has a nice life insurance policy anyway. I can purchase private but not for 2 years. Thoughts? I really want this job and it would give me a ton more flexibility then I have now and growth potential

    what would you do?

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2015

    Hi rozem,

    I would take the job. If you've been contributing to Social Security, and you get diagnosed with Stage IV cancer, you automatically qualify for Social Security disability. Once on Social Security disability, you can qualify for Medicare.

    I love having a flexible job; I think you will too.

    Best wishes!

    **** OOPS -- just saw you're from Canada. You'll have to check with the Ontario/Canadian policies on long-term disability!

  • RobinLK
    RobinLK Member Posts: 840
    edited August 2015

    Thank you ladies for your support. Waiting for Ob/Gyn to set up ovary removal. On tamoxifen until those puppies are out. Then I get to search for the right AI. My next appt with endo should be interesting.

  • TonLee
    TonLee Member Posts: 2,626
    edited August 2015

    Roze,

    Cancer impressed upon me the urgency to life. I started a nonprofit before I was even totally finished with surgeries. It has been wildly successful, but the hardest thing I've ever done in my life. Why am I telling you this? One word. Stress. I followed my heart, my path and just went for it. But, I didn't realize how stressful it would be....and how amazing.

    If you are one of those people who believe stress can be a trigger for cancer, and I do, then part of the decision equation should measure how much stress each will cost.

    That's my two cents.

    :)


  • Mommato3
    Mommato3 Member Posts: 633
    edited August 2015

    I would take the job too. I've had a job with a base salary and commission. It was great! Plenty of flexibility if I needed it.

    Congrats on the four years Rozem!!

  • rozem
    rozem Member Posts: 1,375
    edited August 2015

    ElaineT - thank you! Iooked in to our retirement plan here in Canada (CPP) and yes I would qualify although you don't get much.

    TonLee - Welcome back!!!! so nice to "see" you here. Good point on the stress...this job is way more stressful not in terms of the job itself but being corporate. I have zero flexibility, 1.5-2hr total commute time per day, only 3 wks holidays (with no hope in hell of getting 4 for 10 years!!!!) my QOL would be so much better because I can work from home 2-3 days (no commute -yay!) and they cant really tell me how many holiday days to take b/c Im a free agent. So all that equals less stress

    Mommato3 - thank you! flexibility is the key here, I seriously feel like there should be bars on my office window...I hate that trapped feeling.

    I just heard back from the private insurance provider and I cant apply until Im 7 years out from diagnosis which is in 3 years! This cancer thing is the gift that keeps on giving...

  • CassieCat
    CassieCat Member Posts: 1,257
    edited August 2015

    I wanted to share with other triple positives here that I finished my year of Herceptin today! Here's hoping it's done its job. I'm entering year 2 cancer-free (as far as anyone can tell) and aim to finish it that way, too! I'm also hoping my hair starts growing faster once the Herceptin is out of my system.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2015

    Congrats, Cassie! Hope you feel "done." Looking forward to joining you by October.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2015
  • ang7894
    ang7894 Member Posts: 540
    edited August 2015

    Congrats, Cassie !!

  • rosesrx
    rosesrx Member Posts: 458
    edited August 2015

    Yea Cassie!

    rozem, also ask yourself if you would wonder/regret if you did not take this opportunity. We need to strive live like we are living not like we are dying.

    We can all testify that the waiting and the unknown are the most stress inducing. Be kind to yourself and ask for help.

    Had H infusion today and asked them to slow it down to 45 min since I was tachycardic. It seemed to help.


  • MMay
    MMay Member Posts: 27
    edited August 2015

    Congratulations Cassie!!

  • CassieCat
    CassieCat Member Posts: 1,257
    edited August 2015

    rose, I always had Herceptin over 60 minutes. I think slower seems to be better where Herceptin is concerned.

    Thanks, all, for celebrating with me. I'm glad I was able to do the full year. It's a little surreal, being "done" with all that. Two of my three main nurses weren't there today, so I was only able to say goodbye to one of them. She gave me a hug and told me she hopes to never see me back there again. I agreed. :)

  • lago
    lago Member Posts: 17,186
    edited August 2015

    kayb It's not all that uncommon for triple positives to be low in the hormone area. I was 30% ER+ and 5% PR+

    Yay CassieCat

    Rozem I personally like the lack of stress I now have in my job. But I too would be doing the math in your case.

  • Suladog
    Suladog Member Posts: 952
    edited August 2015

    congrats Cassie!!!!

  • JenPam
    JenPam Member Posts: 176
    edited August 2015

    Jean, I'm also taking Perjeta as an adjuvant treatment. I'll be the first one treated with this regimen at my center. Let's hope it works well!


  • Gretagirl
    Gretagirl Member Posts: 182
    edited August 2015

    Rozem I would take the job. I had just left a 16 year job to start my own business right before I was diagnosed. Happy I did.

    Kayb I can't help you I am 100% ER and 50% PR. I hope you find info

    Cassiecat Congratulations!!!! I didn't realize Herceptin would affect hair growth

    Rosesrx I had to request that they slow down the herceptin infusion. He was going to do it in 30 minutes and I told him no it needed to be at least 45 minutes

  • CassieCat
    CassieCat Member Posts: 1,257
    edited August 2015

    Gretagirl, they say it doesn't, but anecdotally it seems women find their hair grows slower during Herceptin. My hair is maybe 2 inches long, and it's been 8 months since I finished chemo.

  • Gretagirl
    Gretagirl Member Posts: 182
    edited August 2015

    ok I didn't know thanks for the heads up

  • momwriter
    momwriter Member Posts: 310
    edited August 2015

    Congratulations Cassie Cat!

    I think you'll find your hair will start growing faster. About a year after completing Herceptin my hair was pretty much back to normal (pre-chemo)- and at 1.5 after finishing herceptin, completely. I totally believe Herceptin slowed it down. I am now taking Biotin as well. It was a long haul- longer than non-Herceptin women that I know- but you are well on your way!

    It is my belief that cold caps and other hair-conserving therapies will transform the cancer experience. Hoping those days will come soon for all the sisters.


  • rosesrx
    rosesrx Member Posts: 458
    edited August 2015

    H over 45 min helped but still tachy at echo this morning according to tech. It will definitely be a 90 min infusion when the dose gets upped.

    Back to cutting out the caffeine more. I may have been downing too much iced tea. When they refill and I am not watching while eating out I am probably taking in more than I should.Same with the coffee.

    1st full day of the new glasses, which are transitions. Switched from contacts due to worsening astigmatism. Jury is still out. Will give it 2 weeks to retrain the brain.

  • TonLee
    TonLee Member Posts: 2,626
    edited August 2015

    Can you all educate me on the new drug added to the TCH combo? What is it? What do the trials indicate as far as treatment? Why in essence was it added?

    Thanks in advance!


Categories