Started Ibrance...radiation 3 months later???

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dancingdiva
dancingdiva Member Posts: 475

I've just been dx 2nd time. I'm supposed to get radiation to the opposite side axilla of original dx, and to internal mammary nodes. Onc wants to wait 3 months to see how I'm responding to Ibrance before starting the rads.

I don't get it. Why not zap it now before it can continue to spread?

Anybody else do rads but u waited for it?

So frustrated....

DD

Comments

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    You certainly are entitled to an explanation of the plan, so you can feel comfortable moving ahead with it. Tell your onc you need this!

    I'm not a doctor, but some of my thoughts are that the Ibrance plus anti-estrogen is a systemic treatment, while radiation is a local treatment. The Ibrance plus anti-estrogen therapy are meant to shrink/get rid of the cancer to stop spread, and they plan on checking its effectiveness with a follow-up PET scan at three months. Hopefully you will be able to see that these drugs are effective for you. (Three months seems to be a standard scan interval that gives treatment time to work and cause changes that the scan will see.) Then the rads would be for zapping any remaining cells. For early stage, chemo (a systemic treatment) may be given before or after surgery, and radiation typically comes after that, followed by long-term hormone therapy. Maybe your onc is viewing the Ibrance as similar to neoadjuvant chemo? Or maybe following the plan of using hormone therapy first for stage iv? It can be very effective. So this plan seems sensible to me, but what really matters is understanding why your doctors think it is the best plan for you.

  • dancingdiva
    dancingdiva Member Posts: 475
    edited July 2016

    That's exactly what he said! Just not as eloquently as you. Thank you for the explanation. I guess I'm having a hard time wrapping my head around it. My instinct is attack now!!

    I find this so much more difficult than the first time...surgery chemo rads you knew exactly what tonso

    DD

  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    Once you are metastatic, the source of progressions is more often than not micro metatastic disease which is not picked up by scans. The treatments we have to get rid of the tumors themselves (surgery, radiation, etc) can be hard on the body, weaken your tolerance to system-wide treatments like ibrance, and generally put you in a bad position for the long haul. and it's not clear whether they do anything to stop the spread of cancer in stage IV.

    It takes a while to get one's head around this space we are in. If you are stage IV metastatic, which is not clear from either your post or your profile ... you have a chronic incurable disease. Here we don't zap tumors and become cured. Radiation and surgery in this space are generally reserved when a particular tumor is causing pain or interfering with some essential body function. However, we do appear to be figuring out how to survive and thrive on a growing range of treatment options.

    Unless you are oligometastatic... There appears to be some evidence that getting rid of tumors makes sense in women who have very few tumors, of a certain type. Etc ... but that is a whole different discussion.

    In sum, I'd be questioning the rads at all. Could do more harm than good. I certainly would not do rads until I saw what I could get done with Ibrance. Ibrance takes up to 6 months to work. The current thinking is that you don't do these invasive treatments until after aggressive neoadjuvant therapy to reduce or eliminate the tumors in any stage of breast cancer. There are many people on this forum who have gotten rid of at least some tumors entirely on ibrance and other treatments. So 3 months seems early to do radiation.

    I would give your self 3 months just to get through the difficult emotions and really study your options before you do radiation . It may be the right thing, but you have time to develop an informed opinion rather than a reaction. In the interim, read Bestbird's guide to MBC, the best summary of treatment options available, ask all the questions that come to you on this forum and GET A SECOND OPINION on your treatment strategy. This a complicated, highly emotional space and there is a lot on the line.

    It would be helpful if you update your DX and treatment profile so that we understand exactly what is going on.

    Hang in there,

    >Z<

  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    Dancing Diva - I read some more about metastasis to contralateral lymph nodes. Turns out it is a special beast somewhat like oligometastatic cancer, where they may aggressively remove tumors with surgery or radiation with "curative intent".

    If your metastasis is limited to contralateral lymph nodes, you may be in a relatively good place.

    None-the-less, neoadjuvant therapy, where they treat the cancer systemically before surgery or radiation, is becoming the standard in the US because it has better outcomes.

    Good luck and tell us how this goes.

    >Z<

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    DancingDiva, you are attacking it. First with one weapon, then with another.

    Yes, based on DD's other posts, she may indeed be in the oligometastatic group. And I had been thinking that while it may be metastatic disease, there is also the possibility of an occult second primary. Bottom line, DD, in my layperson's opinion, a curative approach makes sense. As always, none of us here have all the details of your case or the training of an oncologist, but so far it looks like whatever the kind, this recurrence is limited and that is encouraging. I do think it is possible that a three-month scan will show improvement.

  • guidinglight
    guidinglight Member Posts: 16
    edited July 2016

    Anyone had ibrance as second line of treatment and doing well? Taking it with Faslodex

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    https://community.breastcancer.org/forum/8/topics/...

    https://community.breastcancer.org/forum/8/topics/...

    Guidinglight, here are links to the Ibrance 2015 thread (which continues to 2016), and the Faslodex plus Palbociclib thread. I think you will get a lot of responses if you post there.


  • dancingdiva
    dancingdiva Member Posts: 475
    edited July 2016

    I have CAM plus the internal mammary nodes affected. Onc says that if they can't remove all of it than surgery is out of the question. I think the internal ones are the kicker here.

    Anyways, I just got horrible news. I've been denied Ibrance because it's only approved as a first line treatment in Canada.Wtf???? This was my only hope. I'm so depressed right now.


  • dancingdiva
    dancingdiva Member Posts: 475
    edited July 2016

    thank you for all the information btw. I didn't know about the Oligo part. I know my situation is not very common. I asked my family doc to get a referral to another onc and flat out refused. He was saying how I was at the best hospital in my city blah blah . I had a friend ask my obgyn who she is close to and she said it would be hard because they r stepping on the docs toes? And all my docs are connected to this hospital. Anyways, too depressed..

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    But isn't it your first line treatment for metastatic disease?

  • dancingdiva
    dancingdiva Member Posts: 475
    edited July 2016

    yes it is. I'm confused about this first-line business. In terms of cancer treatment, I've had chemo and tamoxifen that were systemic treatments. Then this wouldn't be first-line . If it's terms of mBC than yes it would be because I just found out about this spread .

    Are there 2 first lines of treatment

  • dancingdiva
    dancingdiva Member Posts: 475
    edited July 2016

    omg Shetland u just gave me hope. This is my first line of treatment for metastatic disease. I just went back on the Pfizer announcement. They do say that r as initial endocrine-based therapy for their metastatic disease. Omg I hope that this is just a misunderstanding and I get on this. Thank you

  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    dancing diva - you need to get on the Candian Channel where your resourceful compatriates have figured out how to get ibrance as a second line treatment and, if that doesn't work, get Pfizer to pay for it.

    you'll want to private message the folks on that channel that seem to have it figured out.

    To their credit, Pfizer seems to figure out a way to get Ibrance to people who are not covered.

    >Z<

  • dancingdiva
    dancingdiva Member Posts: 475
    edited July 2016

    yes I just discovered that thread yesterday.

    Thank u

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    I'm moving over to your new thread about what constitutes first line...

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