TRIPLE POSITIVE GROUP

Options
1125712581260126212631334

Comments

  • hapa
    hapa Member Posts: 920
    edited August 2019

    ^wow, only four distant recurrences in 6.5 years for women in that study (out of 410 women). Those are pretty good odds.

  • MACTAZ
    MACTAZ Member Posts: 597
    edited August 2019

    Thanks Ingerp.

  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited August 2019

    I'm trying to do some reading and was wondering if there are any statistics that talk about recurrence with AIs (Arimidex (anastrozole), Aromasin (exemestane) and Femara (letrozole). I found this link: https://www.healio.com/hematology-oncology/breast-... I am not 100% sure that is a great link.

    It says this: Five years of adjuvant endocrine therapy, or hormone therapy, can reduce recurrence risk by about 50% and mortality risk by 30%.

    I see my MO's PA tomorrow and was going to ask her, but anyone know the recurrence rate for those drugs (is one better than the other)? I'm having some trouble with anastrozole; knee pain, leg cramps, some headaches. I take supplements, but added 4000 IU vitamin D, a fizzy magnesium drink along with Slow Mag and Hyland's Leg Cramps pills (I think they have quinine) and they help. I'm trying. I ordered the brand-name Arimidex from Eagle Pharmacy before it went up to $60, thankfully, and the leg cramps have subsided, thank God, for now. My next script will be the Teva generic from Walgreens to see if that is better. Your help is greatly appreciated, thank you.


    Edited: I found this interesting, maybe this will help someone.

    The Types of Aromatase Inhibitors
    Currently, there are three AIs used, which include exemestane (Aromasin), letrozole (Femara) and anastrozole (Arimidex). AIs are given to post-menopausal women who have tumors that express estrogen receptors. The U.S. Food and Drug Administration (FDA) approved these drugs to be used in the following ways:

    Arimidex has been approved for women with early-stage breast cancer following surgery. This is a Type 2 "non-steroidal inhibitors," which stops the activity of aromatase, but not permanently.

    Aromasin has been approved for women with early-stage breast cancer who have taken tamoxifen for two to three years. This is a Type 1 "steroidal inhibitor," which stops the activity of aromatase permanently.

    Femara has been approved for women with early-stage breast cancer following surgery, and for women with early-stage breast cancer who have finished five years of tamoxifen. This is a Type 2 "non-steroidal inhibitors," which stops the activity of aromatase, but not permanently.
    https://www.fredhutch.org/content/dam/public/Treatment-Suport/survivorship/Healthy-Links/Aromatase Inhibitors.pdf


  • JaBoo
    JaBoo Member Posts: 520
    edited August 2019

    Ingerp, thanks for the link, that really is heartening! All had tumors under 3cm,wow

  • Bird-of-light
    Bird-of-light Member Posts: 167
    edited August 2019

    Friends, it's been a while since I have posted. It's so nice to see your posts and encouraging thoughts. Yesterday morning on my cancer side, I discovered a lymph node under my ear and very close to my jaw line is hard and tender. I'm 3 years out from original diagnoses. At first my heart sank, but my BS said to watch it for a few weeks. Anyone else have this happen

    Bird

  • LaughingGull
    LaughingGull Member Posts: 560
    edited August 2019

    For a few *weeks*...that is easy for the BS to say! Try to stay distracted, peaceful and patient...I know for me it would be hard but doable. Here is hoping for a very benign explanation for that node.

  • BigPeaches
    BigPeaches Member Posts: 266
    edited August 2019

    As Tom Petty said, the waiting is the hardest part.

  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited August 2019

    Amen to that, BigPeaches.

    Eagle Pharmacy, according to my friend, is out of name-brand Arimidex at this time. I find it interesting that a drug nobody's insurance covers is out of stock.

  • rljes
    rljes Member Posts: 547
    edited August 2019

    Hi Jkeet

    If you get mouth sores (I did) even though I gargled with baking soda every time I went to the bathroom and then some - Rx "Mary's Magic Mouth Wash" worked great for me. My Insurance wouldn't pay - but with coupons I paid about $45.00. well worth it. Some say it didn't work for them, but I hear that the drugstore makes it up and some have different ingredients. CVS did its magic. I also had a difficult time managing the Big D/ Big C (I'd rather have Diarrhea than Constipation) About the 3rd round I had it down to a fine art. Once I was on Herceptin only, I had no issues. I iced both my fingers and crunched on ice during Taxotere - the Infusion Center provided the Ice bags.

    Totally agree with Cowgirl13 - take nausea meds Before you become nauseous. I'd set my alarm and take them around the clock.

    I hear using plastic forks/spoon might help with the metallic taste. Best Of Luck!

  • Hongh
    Hongh Member Posts: 54
    edited August 2019

    something really interesting happened. I had implant surgery 3 weeks ago, all went well, then I found 2 small lumps on the original cancer side, and it’s kind of painful. I went to the dr, they can feel the difference , but says it’s not distinct. I asked to order an ultrasound anyway although they say it might not be accurate because of the recent surgery. I went to my H+ P yesterday , and this morning, the site is not that painful at all and the lump is not that obvious, that makes me wonder was it recurrence and H+P is working? I have only one H+P left, will go to ultrasound tomorrow. I had 100% PCR after chemo.

  • timetobebrave70
    timetobebrave70 Member Posts: 83
    edited August 2019

    I had a similar experience. I noticed a lump during my radiation. Drs said it was the expander. Then when I had the exchange surgery, it was still there. So they wanted me to see my bs. My bs did an ultrasound and she says it’s a fat necrosis:))))

  • Hongh
    Hongh Member Posts: 54
    edited August 2019

    timetobebrave70, that’s really good news, I will see what does the ultrasound say tomorrow.

  • Jkeet
    Jkeet Member Posts: 16
    edited August 2019

    thank you everyone for the advice on how to get through chemo. I’m on day 11 post first cycleand finally feel fine. Do people feel just as bad once chemo is done and you’re only taking Herceptin and Perjeta or are the side effects the same?

  • MACTAZ
    MACTAZ Member Posts: 597
    edited August 2019

    jkeet , H&P is a breeze compared to chemo. I had a few SE like a drippy nose and was a little tired the day after but I was able to get my life back - and felt really good. Most people do fine, you can make it through chemo and then start getting back to the new normal. Chemo is tough but remember we are here for you. Thinking of you. Hugs

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2019

    jkeet--I never did P but, yes--H was much easier than chemo but keep in mind it's not nothing. I was told to expect *no* SEs, but I definitely felt weird on H days and after several months started to feel kind of bad. It occurred to me I'd cut way back on my protein since finishing chemo, so from then on I made a point to eat red meat the two nights before H and I felt *much* better. I've come to be a big believer in protein, particularly when we're pumping chemicals into our system.

  • neeli
    neeli Member Posts: 83
    edited August 2019

    Hi,

    Is breast MRI generally done sometime between 4th and 5th cycles of chemo to check for progress? I do feel the size of the tumor has reduced but i can still feel hard mass when i squeeze out. Ideally all mass should melt away?

  • Newfromny
    Newfromny Member Posts: 139
    edited August 2019

    I had an ultrasound after 3 cycles showed the tumor had significantly reduced in size, probably by about 75%, then after 6 cycles , before surgery, I had an MRI and they no longer saw it, after surgery pathology showed complete response

  • MACTAZ
    MACTAZ Member Posts: 597
    edited August 2019

    I had a ultrasound after 4th cycle which showed both tumors had shrunk. I didn’t have anything after that but my mastectomy came back as PCR, no sign of any tumors and any signs of DCIS was also gone

  • MACTAZ
    MACTAZ Member Posts: 597
    edited August 2019

    $ I found a couple of things that I found very interesting. An explanation of aromatase and study titled lThe what, why and how of aromatase inhibitors: hormonal agents for treatment and prevention of breast cancer". Here are the links.

    http://drplechner.com/learn/miscellaneous-articles/what-is-aromatase/

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2228389/

    The reason I found this interesting is I found out the 3 AI drugs treat aromatase differently and was wondering if one would be better than the other. Aromisin permanently disables aromatase enzymes when binding to them while Letrozole and Arimidex are AIs that only temporarily disabled aromatase enzymes. I’m going to ask my OC if it wouldn’t make sense to permanently disable aromatase enzymes. As a note, I think our bodies will continue to produce aromatase after we go off the AI but those enzymes that were bound could be either permanently effected or not depending on the frug you take. I’m sure I’m missing something but found this interesting

  • hapa
    hapa Member Posts: 920
    edited August 2019

    MACTAZ - thanks for those articles! I would think permanent vs temporary would only really matter if you are missing doses or are stopping treatment. I don't know how long enzymes last in the body, but I do know that cells are making them and breaking them down all the time if everything is functioning normally. Let us know what your onc says.

  • MACTAZ
    MACTAZ Member Posts: 597
    edited August 2019

    Will do hapa and your thoughts make sense. Identify see my Onc until November but it is on my list.

  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited August 2019

    Survival and chemotherapy success rates for various cancers

    https://www.medicalnewstoday.com/articles/326031.p...

    Interesting article.


    Updated below.

  • BigPeaches
    BigPeaches Member Posts: 266
    edited August 2019

    That's not very promissing. I try not to pay too much attention to numbers, I plan to outlive that.

  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited August 2019

    I have trouble discerning the information, BigPeaches, and I sent a copy to my doctor for his comments. I do not know the difference between Localized, Regional and Distant. Numbers are only that, and I apologize if it was not promising, I apologize for sharing.

    It opened my eyes a little to the women I met having radiation for lung cancer. I get my infusion with a man who has stage IV lung cancer and he is quite a character. He takes and recommends organic sulfur, which I have now realized is MSM. I used to, in his words, blow him off, but started taking MSM with my hormone pill for joint pain and it helps! Even his doctor has changed her mind and appreciates the benefit he is having with organic sulfur.

    Keep sharing that positivity, BigPeaches, and I apologize if sharing this brings anybody down. Lisa

  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited August 2019

    Big Peaches, my doctor sent me better statistics and a note:

    "Better estimate for your breast cancer. This is the uk predict model."

    This does not show data in the perjeta era.

    6 deaths due to other causes
    11 breast cancer related deaths
    4 extra survivors due to trastuzumab
    7 extra survivors due to chemotherapy
    8 extra survivors due to hormone therapy
    64 survivors with surgery alone
    Treatments after Surgery
    Selected treatments after surgery are:
    Hormone Therapy
    Chemotherapy (3rd generation)
    Trastuzumab
    Hormone Therapy
    Hormone therapy, or endocrine therapy, involves a woman taking drugs to prevent the growth of tumour cells that are boosted by the hormone oestrogen. Drugs of this kind include tamoxifen (brand names include Nolvadex, Istabul, Valodex, and Soltamox) and aromatase inhibitors such as anastrozole, exemestane, and letrozole (brand names Arimidex, Aromasin, and Femara). [1]
    Some hormone therapy drugs act by blocking the action of oestrogen on the cells and some work by lowering the amount of oestrogen in the body (NB hormone therapy for breast cancer is the opposite of hormone replacement therapy or HRT, which is taken by women to help INCREASE oestrogen levels to help deal with side-effects of the menopause).
    Treatments usually have the potential to cause harm as well as benefit. It is important to weigh up the risks of potential harm against the potential benefits of treatment in order to reach a decision. Some may cause more harm than benefit to some people.

    [1] Source: www.nhs.uk/news/cancer/breast-cancer-drugs-set-for-preventative-use/
    www.breastcancer.org/treatment/hormonal/serms/tamoxifen
    www.breastcancer.org/treatment/hormonal/aromatase_inhibitors
    Chemotherapy
    Chemotherapy uses drugs to weaken or kill cancer cells throughout the body. There are many different chemotherapy drugs which work on different kinds of tumour cell, and they are often given in combinations to maximise their effectiveness. The options in this web tool cover generic chemotherapy regimes used most commonly in England:
    No chemotherapy at all
    2nd gen is short for second-generation chemotherapy drug regimes such as FEC (fluorouracil, epirubicin and cyclophosphamide)
    3rd gen is short for third-generation chemotherapy drug regimes that contain taxanes such as paclitaxel (Taxol) and docetaxel (Taxotere)
    The definitions of the different chemotherapy regimes are found in the Early Breast Cancer Trialists' Collaborative Group paper 'Comparisons between different polychemotherapy regimens for early breast cancer: meta-analyses of long-term outcome among 100?000 women in 123 randomised trials', published in Lancet, 2012.
    High cumulative dose anthracylcine regimen were shown in the EBCTCG 2012 analysis to be equivalent to taxane based regimen and should be regarded as third generation.
    Treatments usually have the potential to cause harm as well as benefit. It is important to weigh up the risks of potential harm against the potential benefits of treatment in order to reach a decision. Some may cause more harm than benefit to some people.
    Trastuzumab
    Trastuzumab, often known by the trade name Herceptin, is a drug that specifically targets HER2 positive tumours.
    Treatments usually have the potential to cause harm as well as benefit. It is important to weigh up the risks of potential harm against the potential benefits of treatment in order to reach a decision. Some may cause more harm than benefit to some people.

  • BigPeaches
    BigPeaches Member Posts: 266
    edited August 2019

    Oh that's ok Lisa, I've seen it before, no worries :)

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

    missouricatlady - the three breast cancer classifications in this article are localized - in which is cancer confined to the breast only, regional - cancer in the breast and nodes, and distant - cancer that has spread outside of the region to bones/brain/lung/organs/other. It is important to note that this data is likely taken from SEER stats and means that all types of breast cancer subtypes are grouped together, regardless of level of aggressiveness. The first table shows which combinations of surgery/chemo/radiation that had been done by which stages. The survival chart shows that 61% of patients, at diagnosis, had cancer in the breast only, 32% had cancer in the breast and nodes, and 6% were diagnosed stage IV de novo. The corresponding five-year survival percentages were 99% for those with cancer in the breast only, 85% for those with breast and nodes, and 26% for those with distant metastasis.

    When I put my numbers into Predict 2.0, the UK calculator, I am slightly better than the chart in the article suggests - my five year survival is 88%. I like the Predict calculator because it factors in Herceptin, whereas in the past Lifemath did not - Lifemath gives me 85%. As new treatments come along the calculators eventually add them in, so a new calculator will eventually include Perjeta.

    Here are the links to both calculators:

    Edited to add the most up to date version of Predict -

    https://breast.predict.nhs.uk/tool

    http://www.lifemath.net/cancer/breastcancer/condsurv/index.php

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited August 2019

    hi guys! So one of my best friends has been diagnosed stage 2b er/pr- her2+ and is having her port installed tomorrow, and will start TCHP in 2 weeks.

    I am putting together a "chemo care" kit to mail to her...dark nail polish for her nails, a cap to sleep in to keep her head warm, biotene mouth wash, aquaphor for her dry nose, hand cream...what were some of your favorite things to have during chemo that I can put in her goody basket? Thanks!

    Pamela

  • MACTAZ
    MACTAZ Member Posts: 597
    edited August 2019

    SpecialK, can I ask a question, I have looked at the predictor before but the thing that stumps me is the positive node question. Initially the ultrasound and MRI said no node involvement but the path report, after sentinel node removal, showed while no cancer cells there was scarring in one node which indicates cancer cells could have been present. I guess I’m not sure if I had node involvement but the path report might suggest there was. I don’t need anything else to worry about but I think it would be good to understand if there was a possibility that cells had migrated beyond the breast. My Onc and BS were not clear on this and didn’t seem to want to discuss this. I just want to understand, I know you can’t give me a definitive answer, I don’t think there are any when it comes to this, but just want to understand the possibilities, I’m very info driven.
  • MACTAZ
    MACTAZ Member Posts: 597
    edited August 2019

    Hi Pamela, does she read or like puzzles? My friend brought me her kindle and gave me access to all her books, she also gave me a puzzle she made of a picture we took on one of our girls vacations. Not saying give her a kindle, but maybe some books or magazines. Wish her the best

Categories