TRIPLE POSITIVE GROUP

Options
1…12561257125912611262…1334

Comments

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2019

    kimm - Adriamycin with Taxotere is a legitimate regimen, here is the Her2+ chemo regimen page from the NCCN guidelines for breast cancer. I feel like it is not combined often because of the potential for more intense side effects.

    Also, I believe Johns Hopkins does pathology second opinions remotely. Here is a link for that also under the chemo regimen page. Also Stanford and U of Colo.

    image

    http://pathology.jhu.edu/department/services/secondopinion.cfm

    https://stanfordhealthcare.org/second-opinion/overview.html

    https://www.uchealth.org/services/cancer-care/remote-second-opinions/

    · Share on FacebookShare on Twitter
  • Annie60
    Annie60 Member Posts: 328
    edited July 2019

    I did AC alone - 4 rounds then 12 of taxol with every 3rd one with HP. I will continue HP for a year. I had mircromets in 2 nodes. My BS and MO thought the micromets were a big deal. With out that, I would not have had to do chemo - just radiation.

    · Share on FacebookShare on Twitter
  • LilyCh
    LilyCh Member Posts: 193
    edited July 2019

    Annie60, I was under an impression that, for her2+, no matter which stage it is, chemo is always needed, am I missing something here?

    · Share on FacebookShare on Twitter
  • Annie60
    Annie60 Member Posts: 328
    edited July 2019

    All I know is my BS had said that with as small as my tumor was, I could do a lumpectomy and radiation. It wasn't until after surgery and had positive nodes (2) that she told me I had to have chemo. I remember how shocked we were. Perhaps I would have had to have HP anyway since I was Her2+.

    · Share on FacebookShare on Twitter
  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited July 2019

    I think any tumor over .6cm calls for chemo. Special K will know.

    · Share on FacebookShare on Twitter
  • Tess111
    Tess111 Member Posts: 58
    edited July 2019

    My tumor was .8 cm. My surgeon told me the same as your surgeon did Annie60- lumpectomy, radiation and endocrine pills. However, when we got the pathology back and it showed that it was highly Her2 positive that changed the whole plan. I was devastated.

    My MO ordered 6 rounds of TCHP for me. Because of severe side effects, my MO stopped the chemo after I completed 4 rounds, but I continued with the original plan of 6 Perjeta infusions. (The perjeta was unusual for someone with my smaller tumor and node negative status. I have often wondered what my MO wrote my insurance company to get them to agree to the six rounds of Perjeta. Yikes!)

    At the time of my diagnosis in 2016, Cowgirl is correct - anything over .5 cm and the guidelines called for chemo and Herceptin. I don't think that has changed.

    I'm guessing, Annie, the positive nodes were responsible for the AC-T protocol with Herceptin and Perjeta, However, you are correct that your Her2 positive diagnosis would have meant chemo and herceptin even without the positive nodes.

    · Share on FacebookShare on Twitter
  • LTWJ
    LTWJ Member Posts: 121
    edited July 2019


    Paloma, It took awhile for my hair to regrow after TCHP. I finished mid Sept 2017 and had very little hair even at Christmas. I wore a wig or bandanna until April 2018 when it was finally full enough to look like a pixie cut. But it did all grow back :)

    · Share on FacebookShare on Twitter
  • Alicesneed
    Alicesneed Member Posts: 80
    edited July 2019

    Had round 5 of 6 TCHP a week ago today. New side effect I noticed today - black spot on tongue. Anyone else have experience with this?

    · Share on FacebookShare on Twitter
  • Musosgirl
    Musosgirl Member Posts: 387
    edited July 2019

    I do not have any experience with black spots—but a quick google search suggested this was not unusual with Chemo. Chemo is known for causing dry mouth and mouth sores—and black spots can result from either of these. I saw suggestions of brushing or flossing the spots—it may be a build-up of dry, dead tongue cells. And if you aren’t swishing with Biotene regularly, you may try that. Hopefully someone with first hand experience will respond

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2019

    alicesneed - May be a fungal issue, which is common with chemo, and you may need nystatin mouthwash, which is rx. Let your oncologist know.


    · Share on FacebookShare on Twitter
  • Alicesneed
    Alicesneed Member Posts: 80
    edited July 2019

    Thanks SpecialK & Musosgirl - MO said to call if it swells or bleeds otherwise she’ll check it out when I see her next week. So I guess not a big issue. Will keep swishing with Biotene and do some extra brushing. Seems to be something new each round...

    · Share on FacebookShare on Twitter
  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited July 2019

    I just wanted to say that I had 1.5mm of IDC...and I did taxol and herceptin...

    · Share on FacebookShare on Twitter
  • bucky317
    bucky317 Member Posts: 216
    edited August 2019

    Hi Everyone!,

    I don’t come on here often but wanted to check in and say 👋. It has been over 8 years since my initial diagnosis. I am doing well and still taking Anastrozole ( ughh 😧..my achy joints) and will continue at least till year 10. I still see my onc. every 6 months for a check up. I still remember all the help, support and guidance that Lago, Special K and many others gave me. You ladies are the best!

    · Share on FacebookShare on Twitter
  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2019

    bucky--hello and welcome back! I'm just curious why you're doing the extended course of Anastrozole. A lot of us just starting out are hoping to get by with five years.

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2019

    bucky - hey you! Good to see you!

    It has been documented now that extended Tamoxifen therapy for ER+ pre-menopausal women is beneficial. Once that had been looked at it prompted a look at extended aromatase inhibitor therapy for post-menopausal patients, based on the premise that AI therapy is statistically more effective than Tamoxifen. The benefit of extended AI therapy seems to be limited to local recurrence, but not distant based on study results - here is some linked info. One genomic test that may help with the decision to extend AI therapy is the Breast Cancer Index test - typically done after five years of anti-hormonals -which had a dual result - your risk of recurrence going forward at the time of the test, and the likelihood of benefit.

    https://www.breastcancer.org/research-news/asco-recommends-extended-hormonal-tx-for-some

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5937869/

    · Share on FacebookShare on Twitter
  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited August 2019

    WC3 - congrats to you! My last one is in November. Cheers to our runny noses!

    · Share on FacebookShare on Twitter
  • Jkeet
    Jkeet Member Posts: 16
    edited August 2019

    hey ladies, had my first chemo cycle yesterday. Feel pretty crappy, super tired, slightly nauseous, tight chest and metallic taste in my mouth. Any pointers? Thanks!

    · Share on FacebookShare on Twitter
  • Paloma1211
    Paloma1211 Member Posts: 103
    edited August 2019

    Hey Jkeet, sorry you’re going through this. Chemo, while not particularly fun, is manageable.

    My tips: drink plenty of water, go for a walk or do some kind of intentional movement every day, rest, rinse your mouth frequently with a baking soda/salt water combo, eat small meals. Drink peppermint or chamomile tea for a tummy ache; a heating pad on the belly feels nice, too.

    On your next round, be sure to suck on ice cubes during taxotere - it will prevent mouth sores.

    Wishing you minimal side effects and the best of luck

    · Share on FacebookShare on Twitter
  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited August 2019

    Jkeet, just a couple of things which I did that helped me. Drink lots of water, at least 8 glasses a day if not more. Do this every day for the next year until you are out of treatment. If I can do it, I know you can do it. The other thing is to take the nausea drugs before you feel nauseous. You have to get ahead of it because if you don't, you won't be able to help as much.

    Golly, I just realized that my first chemo was 10 years ago, almost to the day! Wow!!!

    You will get through it, just take it 1 day at a time.

    Blessings.

    · Share on FacebookShare on Twitter
  • MACTAZ
    MACTAZ Member Posts: 597
    edited August 2019

    Jkeet, I’m sorry you are here but it is a good place to get info and understanding from people who have been through this.

    I know everyone says drink fluids, I agree, but I will tell you I struggled with this. The taste was horrible no matter what I tried so I ended up going in to the infusion center to get fluids once or twice the following week after treatment. It helped me get through. Because my taste was so messed up and the texture of food was unappetizing, eating was also an issue. I had to force myself to eat something, but what helped is I just tried anything that sounded good. Mashed potatoes with milk gravy, Luigi’s real Italian ice (you get fluids with this also), lots of soups (with soft noodles or veggies). I also drank ensure to get protein and calories because I just couldn’t eat.

    You need to manage your bowels, have on hand anti-diarrhea meds (Imodium) and laxatives (senna) if needed. I had a terrible time initially but once I figured it out was able to get it under control. If you do become constipated magnesium citrate works but use only as a last resort. You can get these at Walmart or Walgreens or any pharmacy.

    I wish you the best, I will tell you I began this journey 1 year ago and the memory of chemo has faded. I made it through and had s PCR (pathological complete response) meaning no remaining cancer cells. Hugs.
    · Share on FacebookShare on Twitter
  • neeli
    neeli Member Posts: 83
    edited August 2019

    Do triple positive survive for longer than 10 years since initial diagnosis? I know each case is different but how does it look realistically

    · Share on FacebookShare on Twitter
  • CourMatt
    CourMatt Member Posts: 6
    edited August 2019

    Jkeet, I am sorry you feel bad. I do agree with drinking plenty of water and eating what does taste good. A dietician told me not to eat favorite foods as an adversion to that food might happen. So for a while, it was ensure three times a day and yogurt in between. The suggestion of the heating pad was spot on. It seemed to really help cramps and abdominal pain. Positive thoughts sent your way.

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2019

    neeli - yes, they definitely do. I am currently at nine years, and there are other TP folks on this site who have been here longer than I have. Linked below is an article with some survival stats, look for the section about treatment.

    https://www.healthline.com/health/breast-cancer/her2-positive-survival-rates-statistics

    Here are some links to threads regarding Her2+ survival from BCO.

    https://community.breastcancer.org/forum/80/topics/825974?page=27#post_5434557

    https://community.breastcancer.org/forum/80/topics/740304?page=29#idx_861


    · Share on FacebookShare on Twitter
  • neeli
    neeli Member Posts: 83
    edited August 2019

    Thanks for the links SpecialK :)

    · Share on FacebookShare on Twitter
  • Flnana2
    Flnana2 Member Posts: 118
    edited August 2019

    jkeet, I am on day 11 of my first TCPH treatment. I had a bad time with diarrhea so my first recommendation would be to start Imodium immediately if you have any signs of it. Mine started day 4. If Imodium won’t solve the problem get an RX for something stronger. Drink LOTS of fluids. Today I am feeling almost back to normal so remember...this too shall pass. Good luck

    · Share on FacebookShare on Twitter
  • Annie60
    Annie60 Member Posts: 328
    edited August 2019

    jkeet - if the taste of water keeps you from drinking, try lemonade. I had to make my own since the Crystal Light tasted awful, too. Eat whatever taste good but try for protein. I had a hard time with that. I could do boiled eggs one week then throw up at the thought of them the next. Take it a day at a time.

    · Share on FacebookShare on Twitter
  • WC3
    WC3 Member Posts: 1,540
    edited August 2019

    I could only drink carbonated water that was more towards the bitter end like Pellegrino and citrus flavored carbonated water.

    · Share on FacebookShare on Twitter
  • BigPeaches
    BigPeaches Member Posts: 266
    edited August 2019

    neeli, I'm on year 11, was diagnosed stage iv last year but I'm not going anywhere anytime soon! :)

    · Share on FacebookShare on Twitter
  • neeli
    neeli Member Posts: 83
    edited August 2019

    Bigpeaches - Hifive to you!

    · Share on FacebookShare on Twitter
  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2019

    For those who don't check in on Lumpie's breaking research thread, I found this really heartening:

    https://ascopubs.org/doi/full/10.1200/JCO.19.00066

    · Share on FacebookShare on Twitter

Categories