TRIPLE POSITIVE GROUP

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Comments

  • elainetherese
    elainetherese Posts: 1,640

    HapB,

    My blood pressure was crazy, out-of-control before chemo. I asked my PCP if that would interfere with my treatment; he said no. During chemo, my blood pressure was awesome! But, it went back up afterwards, and my PCP worked with me to find a solution. I'm now on a three drug cocktail, and my blood pressure is finally under control.

  • moodyblues
    moodyblues Posts: 393

    BB   Thank you!

  • Hello!
    I'm just starting down this chemo road... starting June 16th ...
    They are putting me on
    TCHP +neulasta for six rounds ....then if that shrinks the 1.7 cm tumor down enough ...then its surgery ...maybe radiation .... then round out the year with Hercepton (sp?) and Perjeta .... then 10 years with Letrozole ...

    I'm so nervous about the chemo... I can take a lot but the horror stories are getting me so scared....
    Has anyone have any good advice about doing chemo TCHP ?

  • This is what I'm worried about ....I've been on HP medication ( one pill a day ) for 20 plus years... I'm scared what the chemo will do with it :(
    I'm just plain afraid...

  • Hap,
    I'm stage 2A with 1.7 cm tumor with one 9 mm node involved ( confirmed by MRI ) grade 3 and Triple Positive ..

    Thank you ... this is something to look at and to ask my MD !

  • Hap,
    I did the http://www.lifemath.net/cancer/breastcancer/therap... and this is what I got.. now this is not with me putting in my chemo .. because it didn't have what I'm getting which is the Taxotere,Carboplain,Herpeptin and Pejeta for 6 rounds ..

    If I'm reading this right it will give me 4.2 years back so instead of having 28.3 more years on the ave I will have around 23 years give or take..that would put me at 78 ....and this is with me not putting in my chemo ..
    Its all can be confusioing

    Classification: TxNxMx AJCC Stage: unknown
    Cancer Mortality:18.4% expected 15-year Cancer Death Rate.
    19.2% 15-year Kaplan-Meier cancer death rate
    Life Expectancy:
    Without therapy, this cancer shortens the life expectancy of a 55-year-old woman by 7.3 years. (from 28.3 years to 21 years
    Therapy benefit:
    The therapy selected would improve average life expectancy by 3.1 years, or
    1130 days over expectancy without therapy.
    42.9% fewer cancer deaths after 15 yea
  • wabals
    wabals Posts: 192

    HapB I was on Kadcyla, a targeted therapy. It is herceptin plus emantsine. It was a clinical trial

  • specialk
    specialk Posts: 9,299

    posey - you asked about experiences with Femara. I started on it summer of '11 as my MO favors it due to a slight performance edge, Mylan brand was the generic my local pharmacy carried. By six months in I had a trigger thumb and enough bone loss (combo of chemo and antihormonals, I had pre-existing osteopenia from a total hyst/ooph at 45, known baseline bone density prior to treatment) to warrant starting Prolia injections. I switched to Arimidex, Accord brand. Stayed on 18 months, original trigger resolved within the first six months but developed new ones at the 18 month point, along with an inflamed knee which was fixed with a cortisone injection. During this total two year time period I had relatively minor joint pain, and some insomnia, which I expected.

    What I learned was that brand matters, each generic has different additives and fillers. I went back on Femara at the two year point, on Teva brand. No problems for two years. Switched to Roxane brand, no problems for another two years, but it is no longer being made. This is unfortunate because it actually has fewer additives and fillers than the brand name by Novartis - my insurance will not allow the brand name due to cost. Another thing I learned, for me as an individual, switching to an anti-inflammatory diet (no sugar, dairy, peanuts, gluten, eggs, soy or corn) allowed me to control my weight and decrease the typical side effects of joint pain and hot flashes. I am in year 6 of anti-hormonals and I plan to continue as long as pissible


  • kae_md99
    kae_md99 Posts: 394

    any reason why some are on anti hormonals for5 yrs and some are on it for10 years?

  • elainetherese
    elainetherese Posts: 1,640

    kae,

    Some breast cancer patients get the BCI test after five years to see whether or not they are at high risk for recurrence. If the test shows a high risk of recurrence, these patients are advised to take anti-hormonals for ten years.

  • Kae... what I've read so far.. the research is showing it better odds with 10 years instead of 5yrs ....

  • I think it worth it...I think LOL... I'm going to talk again with either my NP or Cancer MD this week for sure..
    thank you

  • Thank you Elaine! You are a wealth of info!

    Denise T

  • specialk
    specialk Posts: 9,299

    kae - initially studies were done keeping patients on anti-hormonals for 5 years, and there was some degree of carryover protection that extended beyond that even though the medication had been stopped. Then a study was done on Tamoxifen for longer than 5 years and the result was extended benefit in recurrence prevention.

    http://ascopubs.org/doi/abs/10.1200/JCO.2013.54.22...

    This initiated studies of the same type for AI drugs.

    http://www.nejm.org/doi/full/10.1056/NEJMoa1604700

    Also, the Breast Cancer Index (BCI) from Biotheranostics looks at your original tumor with a genetic assay and provides a two-pronged predictive and prognostic result that indicates recurrence risk beyond five years, and benefit from the drugs themselves.

    http://www.biotheranostics.com/patient-breast-canc...

    Some oncologists are not yet sold on continuing anti-hormonals beyond 5 years because of the side effects some patients experience, others use available science in tests like BCI (mine does), and others just extend their patients to 10 years as policy without any testing


  • yeah...that confuzzy me too.. so I didn't add it ..

  • kae_md99
    kae_md99 Posts: 394

    thanks ! is BCI expensive? my insurance might not cover it...can it be done at mastectomy

  • Taco1946
    Taco1946 Posts: 630

    Like, Wabls, I'm NOT sorry I did the taxol and as I said, was prepared to tough out the last four. What I read about being HER+ scared me too. From all I have read, taxol is definitely the mildest of the chemo regimes, in fact, someone called it "chemo light." For good or bad, I never lost my appetite. I know others are more conscious of diet than I have been. I'm not ready to give up my nightly ice cream yet!

    I have no SE I can attribute to the herceptin.

    I never had trouble with nails - had gel fingers and a regular pedicure the whole course. My hair has been slow to come in. No body hair yet (last Taxol was March 21st) and basically "peach fuzz" on my head. I know I am slower than many. In fact, several on the taxol thread talk about it starting to come back before they even finished. Although a friend had given a number of wigs, I find myself very comfortable with scarves. At our age, everyone knows someone who has cancer and they are cooler than wigs. The other thing about being older is that I think many of our friends are more supportive and less threatened by our disease.

    Water, water, water and exercise if you can. Even when the neuropathy in my hands was bad, I walked. I play golf a couple times a week and have started going to a stretch and flex class.

    Bearclaws, I'm glad the marijuauna helped. It did my brother in law with his esophageal cancer too. Medical marijuauna is legal here in AZ (after many battles at the polls) but I never thought to ask for it.

    HapB, my best friend lived with stage 4 cancer for over 5 years. She entered hospice about the time I was diagnoses and died the week before I started chemo. I learned a lot from her. She never let herself by a victim of cancer. She traveled, had time for her grandchildren to know and love her and was able to manage pain. She set relatively short terms goals for herself. (One was that she wanted to live long enough to vote in the 2012 election so she could cancel out the vote of a friend - she did and she got to vote in 2016 too.) What I learned from her was that I would know when I had had enough. And that isn't yet for me! Whatever you decide, you will find support here.

  • specialk
    specialk Posts: 9,299

    hap - the only number that matters is if you are one of those who doesn't survive due to lack of treatment - that can't be accurately predicted by anyone, physicians or calculators. Your decision depends on whether you are willing to risk going without adjuvent treatment, or risk the side effects of doing that treatment.

    Taxol and Herceptin is too new a protocol to be listed on the calculators. It is usually only advised for those Her2+ patients with stage 1 sized tumors.

    kae - BCI is usually done at the 5 year point after you have been taking anti- hormonals. My insurance didn't cover it, but Biotheranostics doesn't charge patients with intact insurance whose policies deny payment after their internal ins department appeals. I believe this is because they are trying to build their database and hel broaden the use of their test among more oncology practices. The only thing I had to pay for was the nominal fee to my hospital's pathology department to prepare the specimen of my original tumor and ship it to California

  • Taco1946
    Taco1946 Posts: 630

    Anyone with cancer (and probably most other diseases) has to make the decision that feels right for her. And those will be different for each of us based in part on other challenges we have faced in our lives. I read the other day that only about half of all patients finish off 5 years of AI. So clearly women are making quality of life decisions all the time. I had brain surgery 10 years ago and would never do that again!

    My DH of almost 51 years has promised that he will respect my choices and not badger me when I say enough. With nine stents and a pacemaker, he also has requested to not be recessitated if he goes into cardiac arrest or has a stroke.

    Not easy decisions for any of us. And they may get harder as we age.


  • elainetherese
    elainetherese Posts: 1,640

    Yes, Taco, many women do quit hormonal therapy due to the side effects. Indeed, some women have even said that chemo was easier than taking aromatase inhibitors. It's all so individual and difficult to predict. I would encourage women to try hormonal therapy, but if it's unbearable, I never blame anyone for quitting. To each her own.

  • specialk
    specialk Posts: 9,299

    hap - it seems like you are leaning away from the Taxol and towards the Herceptin only - which I think is a potentially viable choice for you based on both the calculators and your doc's recommendation. I think if your MO felt that it was not a good choice it would not have been endorsed - so that is worth something. In the past, Herceptin has been found to work synergistically with taxane based chemo in the research that Dr. Dennis Slamon of UCLA used to bring Herceptin to the market for all of us, just now is Herceptin alone (or with Perjeta such as the current trial) being considered as an early stage stand-alone treatment. I wish there was more data available on that modality so that it could be used for guidance in decision making - as with many things associated with cancer treatment, it is on the horizon, but timing for us as individuals is not always optimal.

  • kae_md99
    kae_md99 Posts: 394

    wow Special K,just realized we got treatments at the same time 7 years ago

  • specialk
    specialk Posts: 9,299

    kae - wow! I never noticed your start date - funny coincidence!

  • deni1661
    deni1661 Posts: 425

    Shelabela, sorry you're going through a sucky time, hang in there. Praying you feel better soon.

  • deni1661
    deni1661 Posts: 425

    Ladies, I haven't kept up with the posts lately but you're all in my daily prayers. Recovery from MX/DIEP surgeries is going slow but I'm making progress each day.

    Now that I'm catching up on my reading, I especially enjoyed all the posts about diet....information is so varied that it's difficult to know what is the right approach to keep cancer from returning. I gave up just about everything when first diagnosed (alcohol, sugar, meat, dairy, processed meats, convenience foods, gluten). Did it help eradicate the cancer - who knows for sure? I've decided on the 80/20 rule going forward, I'll try to eat healthy 80% of the time and allow myself treats in between. Including wine! We have a small hobby vineyard so my husband has had to drink my share the last 9 months lol.

    I admire you for enjoying your treats all along, that's what life is about

  • Thank you Hap for this article.... I am on HBP meds.. been on them for 20 plus years....
    i was worried about some of the medication..... but in away this put my mind to ease...
    I'm going for a echo cardiogram next week to make sure my heart is ok to take the meds....
    If everything is ok.. I think its still worth the risk ......

    Hugs from TN

  • moodyblues
    moodyblues Posts: 393

    I am doing the life math treatment calculator and have a question.  I am on TCH, and they ask questions on the chemotherapy type and I am not sure what type chemo mine is, is it generation 3?  What type is TCH?  I am going every three weeks for 6 treatments.  THANK YOU!

    http://www.lifemath.net/cancer/breastcancer/therapy/

  • specialk
    specialk Posts: 9,299

    moody - because the lifemath calculator doesn't factor in Herceptin treatment, I would use the PREDICT calculator since it does. TCH is a 3rd gen regimen. Here is the PREDICT link, and be sure to use millimeters (cm x 10) for your tumor size as this is a UK site.

    http://www.predict.nhs.uk/predict_v2.0.html

  • moodyblues
    moodyblues Posts: 393

    Specialk.  Once again, thank you for your help!  :)

    Has anyone had continued cramping (abdominal) pain?  Sort of like when you have cramps from diarrhea or constipation?  I have moderate cramping, stools not loose but not tight either.  I wake up with it at night.  I have been taking 1/2 of my anti nausea meds because of a tiny bit of queasiness.  This pain is not severe but uncomfortable.  Any tips?

  • What is KI67?