Survival rate with hormonal therapy drugs ??

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Hello everyone. I would love to have the information about the survival rate/occurrence when taking these drugs. And sometimes I wonder if we really need them. To go through breast cancer, surgeries, chemo, radiation, and now more drugs. The side affects in themselves are a daily reminder, that we have gone through cancer. I don't know if I want to get out of bed everyday feeling like a 90 yr. old person. To endure severe pain everyday, and having a lot of trouble functioning is not my idea of, quality of life. 

The onco's should give us a list of drugs and their side effects , and let us decide on which drugs to take, (don't ya think). After all we have to be on these drugs for 5+yrs. Don't you gals get tired of filling scripts, or researching them on line, and after such, not wanting to take it !! Or having to change drugs many times because of the side affects your having.

When getting test results back, they should include your survival rate/occurrence rate with the drug they want you to take. But ok now I am dreaming here. They could not figure that one out could they ? But maybe, is it possible you really don't need to take anything ? But do they know what the survival rate's are is the question. I would love a percentage number.

Aren't you gals tired of hearing about, oh it is your safety net. Really.......

I know the onco's are here to help us.....but if they had to take these drugs, I bet they would change their minds about writing scripts for them. Or at least be honest with us about the hell we are about to endure once more.

It is just sad that these drugs are made to help us........ but they hurt us even more.  I know things are 100 times better then back in the day, but I wish these drugs would not make us feel so darn terrible.

I might try to do some research on this subject, and see what I can find out.

And maybe someday the onco would say.....you will go through more hell, but your percentage rate is........

Take one day at a time, and be easy on yourselves, because we all have been through so much.

Comments

  • midnight1327
    midnight1327 Member Posts: 1,475
    edited July 2012

    Yea, you not on yr own there, i get so tired  doing a simple meanigful task.  i am on tamox for five years and /still on my first, 4 2 go. i feel like 100 some days. I was told it was life line, well my other life line, i am also on thyroid and if i don't have that, nothing will function, but have had that all my life, this is just an added bonus, or is it. it is designed to prevent recurrance in my case 85%, 15 of that been a possibility of recurrance, that was the stats she gave me, combind with the rads, did not have chemo. I did not have chemo as the stats showed only a 7% chance of been any use to me compared to the s/e. so nobody can really tell what the survival rates are with these drugs. Probably not much help to you sorry.

  • Racy
    Racy Member Posts: 2,651
    edited July 2012

    Hi, have you looked at Cancermath, which will give you stats about possible effectiveness of your treatments? Google it.

    I have been on Femara for a year and have very minimal side effects.  I am 40 something. I take Efexor to offset hot flashes.

    Doctors can give you stats from Ajuvant Online or Cancermath.  Please ask your onc.

    You can always try the therapy and stop if it is intolerable.  You need to give your body at least six months to adjust, however. 

  • sbaaronson
    sbaaronson Member Posts: 230
    edited July 2012

    I am about 18 months into Tamoxifen. Do I have side effects, yes, sometimes. I find they come and go. Do I wish this drug was a guarantee that I would never walk the cancer treatment path again, of course! There are no guarantee's about anything in life (well, death and taxes). I think of Tamoxifen as a means of trying to skew the odds in my favor. I want every opportunity to see my children finish school and begin their adult lives. The occasional unpleasant side effect seems a small price to pay to have even a small percentage more a chance at that...

    My sister recently said that I am not back to my old life, I have absolutely experienced a paradigm shift. I (we) are living life on a new plane.

  • Megadotz
    Megadotz Member Posts: 302
    edited July 2012

    ForestGirl,

    There's a lot of good research on hormonal treatment on the main site.  Here's a link:

    http://www.breastcancer.org/treatment/hormonal/new_research/

    I've been on Femara for about two and a half years.  I have side effecs, but they're  at the nuisance level.  My MO was very straight forward about side effects and gave me the FDA notice on the drug before I got the prescription. She let me know that  we could change drugs if necessary to mitigate side effects.

    As  has already been mentioned there are tools available to predict how effective specific treatments are given a cancer's profile (cancermath, ajuvant online).   Talk with your treatment team to assure that you are getting the most effective treatmetn for your situation.

    My particular timor was 100% ER+ and 100%PR+ with a 0 score on HER2.   I had a node involvement and LVI, after chemo and radiation, I was totally on board with starving out any cancer cells that had survived -- since the evidence pointed to them feasting on estrogen.

    Everybody's different in their tolerance to treatment and the "personality" of their cancer. We all make the best decison with the information we have at the time.  I haven't had side effects that make me feel like I'm ninety -- althourgh at 62 , I'm no spring chicken.

    Talk to you team.  Get the results from the tools.  Consider going on the medication to see what the side effects may be for you and see if it's a reasonable trade off for the  benefit they give you.

    As my MO reminds me there are no guarantees, we can only give it our best shot.

    All the Best.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2012

    I've been on Arimidex for amost 8 months and have few and very tolerable se's. My mo was very clear about what the se's might be and made no attempt to downplay them. I take glucosamine with MSM and exercise almost daily. I only feel "old" if I am sedentary for too long. At stage IV and currently NED, these drugs mean something different to me than they do to early stage women. Someone recently started a new Anastrozole thread and there others like me who have neglible se's. People also tend to post more when they are having problems than when things are going well!

    Caryn

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    Not everyone has side effects. I've been taking tamoxifen since early April and have had NONE. I'm pretty athletic, which may be helping me, but still.  I consider it just another supplement to stack the odds in my favor, considering I was highly ER/PR+ and node + as well. Did chemo, rads, had lumpectomy, clear margins, blah blah blah.  

    I take it along with my daily aspirin (also an anti-recurrence drug) and curcumin (and another anti-cancer supplement) and never think about it, except that I'm glad it's there for me to take. I think it's all in the way you look at it.  If you think it's horrible, it may well be. If you turn that negative into a positive, it's probably easier to take.

    Claire in AZ

  • Megadotz
    Megadotz Member Posts: 302
    edited July 2012

    There are also ways to mitigate side effects.  I heard that  there  have been good results with using accupuncture for  AI-related joint pain in a study out of Hopkins.   There are also some reports of using high levels of Vitamin D.

    When I was first diagnosed, I met survivor who had a recurrance after 17 years, she was taking tamoxifin and told me that exercise helped a lot with side efffects.

    I don't know where you live, but I've seen a lot of hospitals in the DC area have groups that provide complementry methods to help mitigate side effects.   There is improvement in providing mitigation for side effects.

  • momof3boys
    momof3boys Member Posts: 896
    edited July 2012

    Did you have the Oncotype test done? It is everything you're asking for.....your MO should order it.

  • Wendy3
    Wendy3 Member Posts: 1,012
    edited August 2015

    I have been also diagnosed with hormonal receptive breast cancer. I have been on Tamoxifen since the first of July. The side affects have been bearable. Losing weight is kind of the biggest and bowels movement changes . I also got myself a nature path and he suggested taking metformin which is a diabetic drug that helps tamoxifen work better. When my oncologist heard what I was doing she said I don't know why we aren't perscribing this to our patients. This may also sound very flakey but have any of you our there tried chaga tea. I have been drinking it every morning and night, this is supposed to help with your immune system. I'm at the beginning of this ride and I'm very determined to beat this.

  • peggy_j
    peggy_j Member Posts: 1,700
    edited August 2015

    I agree with Racy, check out Cancer Math

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

    My MO pro-actively shared the survival/outcomes statistics with me so I could make an informed decision on my treatment. (i.e. the "benefit" of different treatments). If you feel you aren't getting the right info from your MO, maybe time to consider switching or at least getting a second opinion????

  • speace
    speace Member Posts: 116
    edited August 2015

    Hello, I have been on the tomaxifin since may of this year, I finished rads in June and in all honesty I've never felt better, I've lost 13 pounds due to healthy eating and I have been walking 4 days a week for 45 minites. I guess I'm one of the lucky ones being on the tamox.

  • DianaNM
    DianaNM Member Posts: 281
    edited August 2015

    I just went to Cancermath. Taking Tamox or AI improves my recurrence odds by about 2%. If that's right, it's not worth it if the SE's are bad.

  • Artista928
    Artista928 Member Posts: 2,753
    edited August 2015

    How accurate is that cancermath.net? Docs have been telling me it reduces risk by 50% being on tamox and all, and chemo is 30% reduction. I don't know if I'd place that type of descripancy in the hands of an online calculator even if it's a med professional who came up with it..

  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    I can't get their graphs to display correctly.

  • Artista928
    Artista928 Member Posts: 2,753
    edited August 2015

    I just entered my stats on cancermath.net and while it gave me results, there was an * at the bottom telling me this tool is calibered to 5 cm tumor. I had 7 cm. So how do you give me #s then? Makes me wonder about this. I think I'm going to listen to docs more than this thing.

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited August 2015

    The cancermath site is data-driven from the SEER database of breast cancer cases from 1987-2007. It says "greater weight" is given to more recent patients. All it is is data, so of course it's trustworthy but can be "off" for your case because it can't take into account all possible variables and it also doesn't use data more recent than 2007. (It also states that the percentages are within about +-2%.)Tamoxifen has been shown many times to reduce risk of recurrence by between 40% and 50%. The cancermath site lists death rates, not recurrence rates, and seems quite accurate. It says I have a 5.5% chance of dying from breast cancer in the next 15 years with Tamoxifen, 8.1% chance without. My Oncotype results are very similar. This fits the 40% reduction of risk.

  • Artista928
    Artista928 Member Posts: 2,753
    edited August 2015

    Thanks SummerAngel. I'm supposed to be getting ACT- Adriamycin, Cytoxan and Taxol. Why is it written by everyone as CA*4 T*4 for second gen regimens (which I assume means stage II) like it's not all mixed in together? I assume CAT is ACT above?

    And same with TAC for 3rd gen regimens, Taxol Adriamycin Cytoxan = my ACT?

    The *4 or *6 = means # of infusions?

    Thanks!

    I'm borderline IIb/IIIa due to tumor size and trace found in sintenel node 1. I can't add this info anywhere in my sig.


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

    artista - generations of chemo have to do with age, strength and combination of these drugs, this has nothing to do with the stage of the patient. AC-T is Adriamycin, Cytoxan, Taxol. It is written as CA 4 T4, meaning 4 dose dense infusions of Adriamycin with Cytoxan, and 4 dose dense infusions of Taxol. Taxol can also be given weekly, smaller dose and sometimes more easily tolerated than dose dense. You will not receive this regimen together, the AC will be given together, and then when all of your doses are complete you will receive the Taxol. TAC is usually Taxotere, Adriamycin, Cytoxan - which is not a very common combination. And yes, the 4 and 6 have to do with how many infusions - Taxotere Cytoxan is usually 4 infusions, Taxotere and Carboplatin is usually 6. Currently used chemo regimens for breast cancer, stage II can be found on page 42/43 of the NCCN guidelines linked below:

    http://www.nccn.org/patients/guidelines/stage_i_ii...

  • Artista928
    Artista928 Member Posts: 2,753
    edited August 2015

    I"m thinking I may be more stage IIIa cuz of the traces they found in sentinel node 1 and the size 7 cm of the tumor. Surg had me on the border so I'm going with the worse case as I have a feeling he was thinking it but didn't want to say...

    So in this link as I'm going stage III Her2 - the ACT I have written is the same thing as what they have? Different words/generic versions of the drugs?

    http://www.nccn.org/patients/guidelines/stage_iii_.../z

    So according to this, I'm looking at 4-5 months of chemo with the ACT my doc has in mind for me?

    Thanks!

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