Tamoxifen doesn't work well for some ILCs?

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited August 2014

    Hi Momine, no we aren't able to have the Oncotype test in New Zealand. In fact it's not even discussed. I did ask one of my Doctors if I could have it and she said it would have to be done (or sent) overseas and would cost thousands. She seemed surprised I even knew about it haha! We don't even have the gene testing over here in NZ, although that can be done if you have the funds to get it done overseas. All our treatment in New Zealand is free although you can go private if you have private insurance, but private insurance isn't necessary in New Zealand because we have a very good public health system.

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited August 2014

    No gene testing in New Zealand? Not even BRCA tests? Interesting... 

    In terms of Oncotype, we are awaiting for the results and obviously hope for the lowest score possible. 

    I took it upon myself to discover alternative diagnostic tests that might gauge the usefulness of chemo.

    1. Oncotype, offered by publicly traded Genomic Health Inc.www.genomichealth.com

    2. Prosigna, by privately held, NanoString Technologies. www.prosigna.com

    3. MammaPrint (Symphony), by privately held, Agendia. www.agendia.com

    For those that are post-menopausal and want a second opinion on their Oncotype score, it might be wise to ask your oncologist if they can get a Prosigna test. It's not available for pre-menopausal women though (yet). The Prosigna score is a numerical value on a 0-to-100 scale that correlates with the probability of distant recurrence within 10 years.

    I imagine there are other tests, but I haven't discovered them. Feel free to comment if anyone has done tests other than Oncotype.

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  • rivercaralee
    rivercaralee Member Posts: 29
    edited August 2014

    Momine,

    I am very glad chemo worked for you!! I do see your point, however, there are others who disagree:

    http://www.ncbi.nlm.nih.gov/pubmed/24567879

    ILC is, compared to IDC, more often associated with higher age at
    diagnosis, larger tumour size, multicentricity, multifocality,
    bilaterality, histological grade 2, hormone receptor positivity, HER2
    negativity, different metastatic pattern, lower cell proliferation rate
    and less responsiveness to chemotherapy (Arpino et al. 2004; Pestalozzi et al. 2008; Rakha et al. 2008a; Wiesner et al. 2009; Petrelli & Barni 2013).
    In spite of this, treatment strategies for ILC are often similar to
    those of other breast cancers, where most are of ductal origin.

    There is similar research referenced at the top of this thread.

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  • rivercaralee
    rivercaralee Member Posts: 29
    edited August 2014

    I've noticed that many seem to know their exact ki-67 score.  The ki-67 on my original needle biopsy specimen that was used for my Dx was simply listed as "low cell proliferation" with no numbers attached.  It was not redone for my surgical specimen.  I did have the oncotype test done, and I know that they run the test as a part of the battery, but, according to genomic health when I called, they do not release that score because they are not licensed to.  How does one go about getting it done?  Some things changed slightly between the biopsy and the surgical specimin, so I would like to know for sure what this score is.  I wonder if insurance will cover it?

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  • hlya
    hlya Member Posts: 484
    edited August 2014

    Hi, rivercaralee,

    Sorry I just saw your post dated June 30

    I met my ONC in May and show her this article, she said it doesn't really have any solid proof and the source is questionable. Basically, she asked me not to read anything like this. 

    Also, she told me even a woman has not yet entered menopause, but couple of years before menopause if her hormone level has been decreasing gradually, the interval between periods is getting longer and longer, that means her body is going into menopause and she can take medication for  post-menopausal women instead of Tamoxifen.  Just FYI.

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  • hlya
    hlya Member Posts: 484
    edited August 2014

    rivercaralee:

    Also are you in States?  US is the only country who cover the Oncotype test through insurance.  based on what I heard

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  • Momine
    Momine Member Posts: 7,859
    edited August 2014

    River, quoting from the abstract you posted:

    "less responsiveness to chemotherapy"

    Again, what they mean by that is that you are less likely to achieve a PCR (pathological complete response) from chemo with ILC as compared with IDC. However, as I already explained, even with IDC, a PCR is quite rare. Lack of PCR does not mean that the chemo doesn't work. It simply means that it doesn't work 100%, which is why there is surgery, AIs, rads etc.

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited April 2015

    Has anyone discussed the possibility of what is interfering with Tamoxifen which prevents it from stopping tumor growth.

    So far, I've found a couple different studies that correlate a connection with tumor resistance. They are:

    1. BPA (plastic hardening chemical found in food containers, cans, water bottles, etc) and Methylparaben (preservative found in cosmetics and personal care products) cause cancer to be resistant to Tamoxifen.

    Link: BPA & Paraben block breast cancer drugs

    2. Circadian and Melatonin disruption by exposure to light at night, drives intrinsic resistance to Tamoxifen hormone therapy.

    Link: Total darkness during the night is a key to success of BC therapy

    I'm sure there are more, as I've just started to scratch the surface of research. How scientifically credible are these studies taken by oncologists and researchers?

    What have your oncologists said about BPA / Parabens and Tamoxifen resistance?

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  • Momine
    Momine Member Posts: 7,859
    edited August 2014

    John, I am not on tamox, but on an AI. All I have seen about BPA/parabens was a big study recently which concluded that there really is no reason to be concerned about them. 

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2014

    Yikes I had 2 tumors one ILC and one IDC, Same size different quadrant. I hope exemestane is working I am putting up with se.

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  • MomtoIrishQuads
    MomtoIrishQuads Member Posts: 128
    edited August 2014

    Fiz,

    I'm so sorry that you can't get the oncatype or the BRCA1/2 where you live.  That must be very frustrating!!  I can only imagine.

    If it helps you at all, I think I'm similar to you in that I had ILC, Stage 1, Grade 3.  I was told that chemo was "optional" by my oncologist since no data exists to show that it helps (TailorX study in the works).  Then I called my oncologist in CA and he said to do it since this is my 2nd incident (DCIS 3 years ago) and that it would be an insurance policy in case I didn't tolerate AIs. 

    So - I proceeded with TC chemo - and I have to tell you it was pretty intense - so bad that I stopped after one treatment 3 weeks ago because I was worried about the effect it was having on my body.  I looked at the oncatype report again and it said that there was a 4% decrease in distant (other part of the body) recurrence - and that wasn't enough benefit for me to justify the hell that I went through.  Of course, that's just my experience - but you should know that chemo comes with it's own set of downsides and some folks have not done well with it - but it's really unfortunately/sucks that you weren't given the choice.  

    Mom to Irish/Deb

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  • rivercaralee
    rivercaralee Member Posts: 29
    edited August 2014

    Hi Hyla!

    Yes, I am in the States.  My insurance did cover the oncotype test, fortunately.  I know there are some other somewhat similar genomic tests,the Mamaprint test and the Mammostrat test, which may be covered in other parts of the world?  

    I did try the AI Letrozole, but side effects were not tolerable, so that is why my Doctor recommended Tamoxifen, he said the side effects are nearly always less with the Tam for those early in menopause.....I guess I will find out soon!

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  • Momine
    Momine Member Posts: 7,859
    edited August 2014

    River, what were your SEs on the letrozole? It sounds like you had a very severe reaction and quickly.

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  • rivercaralee
    rivercaralee Member Posts: 29
    edited August 2014

    Hi Momine,

    On letrozole after 8 days I had: continual flu like feeling (demoralizing!), ringing in ears and some loss of hearing on one side (a bit scary), extreme vertigo on changing head position (hard to walk and drive!), serious cognitive slow-down/confusion (suddenly could not type accurately, for example), some joint pain.  In short was quite a mess!  Working, parenting quickly compromised!  I am newly trying Tamoxifen, and so far just a hint of problems, if serious side effects occur I am concerned that my motivation will be compromised by reading things that seem to indicate Tamox may not be as effective for me as AI's might be. And so it goes.... 

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited August 2014

    Gosh I must be really lucky on Femara, it's been 3 months now and the only side effects I've had are the occasional headache which of course I think is a brain tumour, a bit of an ache in one shoulder which of course I think is cancer in my shoulder, and a little bit of stiffness every now and then when I stand up, but that's probably just old age (I'm 53) which I know isn't that old but I feel like I've aged another 10 to 15 years over the past six months since my diagnoses. I am also having slight hot flashes but that could also be from the Zoladex injections. I decided that no matter what the side effects were I would perservere with this drug. I was positive I would not go on tamoxifen due to family history of blood clots and uterine cancer. I too have heard that AI's are better than Tamoxifen for Lobular? I wonder why my Oncologist tried to put me on Tamoxifen?

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  • rivercaralee
    rivercaralee Member Posts: 29
    edited August 2014

    Fizzdon, that is great your Femara is treating you well enough!  It does give me hope, I am not much younger than you at 51.  As soon as I'm far enough in menopause, I want to go back to the AI's somehow.  Mabybe I am still not really there yet, although my periods stopped a year ago.  On the other hand, I am rather slightly built, 5'6" with not much fat, (and have no breasts now!), so it is hard to imagine where the estrogen is hiding :). 

    I must ask you the inevitable question, who manufactures your Femara?  Mine (letrozole) was by Teva.  Do you think it makes a difference? (I know this has been discussed at length other places, but since we are on the topic....?

    My Doc did say that the SE's with AI at my stage of menopause would very likely be worse than with Tam, but at first I really wanted to avoid it if possible.  Maybe your oncologist also considered you to be peri-menopausal?

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited August 2014

    Hi rivercarale, the Letrozole/Femara I am on is manufactured in New Zealand by Arrow Pharmaceuticals,  on the box it's called Letraccord Tablets 2.5mg. Surely it wouldn't matter where it was manufactured would it? It should all contain the same ingredients? I was in perimenopause, having irregular periods so they prescribed Zoladex injections, allowing me to go on Letrozole/Femara. 

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  • Momine
    Momine Member Posts: 7,859
    edited August 2014

    River, what do you mean by "stage of menopause"? You can only take an AI if you are in menopause. Being peri-menopausal doesn't work.

    I also wonder if maybe you had some sort of upper respiratory infection when you started the femara, or some other issue that amplified the SEs.

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited March 2016

    @momine. The ovarian suppression injections put your body into state of menopause, thus allowing the use of AIs. I think this is the treatment direction for women who are HR+ and Premenopausal, based on the SOFT and TEXT clinical study that is still in progress.

    My wife is 45, premenopausal and might begin this treatment.

    We meet the oncologist in a few days to discuss this in detail.

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  • Rosiesride
    Rosiesride Member Posts: 513
    edited August 2014

    I will also meet with my oncologist next week as I had recently had bloodwork to see if I am in menopause...last period was on the first chemo treatment February. 10... 54 years old!! Really??  Onc wants to see if I am in menopause as chemo stopped my periods...I am really wondering what he will say as I also worry about side effects as well as the effectiveness of the drug for ILC .   

    I remember reading on a board about the manufacturer of the drugs and how it did make a difference with side  effects.  Rosie 

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  • rivercaralee
    rivercaralee Member Posts: 29
    edited August 2014

    Momine: my onc isnt confident about my men status as it had been just a year since last period (May) when I had surgery. When DX it had been 10 months only. No infection. My oncologist determined that all my symptoms were from letrozole. most likely because each and every symptom completely cleared up within a few days after stopping, except for a slight lag on the cognitive issues. My symptoms are very consistent with others who have side effects from letrozole if you look back at people's posts.

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