Fill Out Your Profile to share more about you. Learn more...

Question about new treatment for MBC

meme5
meme5 Member Posts: 43

Recently diagnosed with MBC after removing two lymph nodes near liver which confirmed related to original lobular ILC in 2013.

My oncologist has put me back on letrozole 2.5 and I will have blood work and pet scan on 12/6 to compare with pet scan in July. Then I may begin Ibrance, Verzinio or Kisquali.

My question is does anyone with MBC just stay on an AI like letrozole until scans say otherwise? Or does everyone immediately start with both AI and another drug.

There is yet no Mets showing up in bones, liver lungs or brain.. just lymph nodes in portahypatic area, two of which were surgically removed.

Thank you for any clarity you can provide

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,647

    I don't think I will be providing you with any clarity, just my experience. I was dx'ed stage IV de novo in 2011 with a single bone met. Ibrance, Verzenio, Kisqali were stillin trials. I was put on an AI (I have tried all three) and have been on them only for 11 years! I have not had any progression. My story is unusual and I doubt I would be on an AI alone if I was dx'ed today, but in my case it has worked out very well. Take care

  • meme5
    meme5 Member Posts: 43

    Actually it does help me. I have gone thru six months of scans, blood work, biopsies (3) before I finally received a MBC diagnosis. Seems like it took forever. Now I somewhat have a plan subject to change after the pet scan but at least I know it is coming from my original lobular cancer in 2013. Although the ER is not as strong as in 2013.
    It really helps to know that there is not a one size fits all treatment. I hope I also am someone who just takes letrozole at least for a while. So thank you for your hope

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,647

    meme5,

    You are very welcome! The only caveat I include when telling my story is that I am clearly an outlier. I have never done chemo, just AI’s and I did have radiation to my bone met. The other point to bear in mind is that no one knows why I have done so well with relatively minimal tx so I put my story out there just for information not for advice. Take care

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Hi meme5. It may depend on your symptoms. In my case, my MO was trying to get a pleural effusion under control so initially opted for Taxol (didn’t help). We then started an AI, adding Ibrance a month or so later. Again, he was hoping the lung would dry up. It turned out I couldn’t tolerate Ibrance (hemoglobin tanked) so we dropped that. He would have been happy on the AI alone but I unfortunately progressed. I suspect that having been exposed to the AI for three years in the adjuvant setting meant that my cancer built resistance quickly. You may find this is the case for you as well but don’t let it get you down. There are other Estrogen treatments to try.

    It sounds to me like your MO wants to see the results from the AI alone. This is definitely worth considering as there are a number of members, xbrnxgrl included, who got a lot of mileage from AIs with fewer side effects.

  • divinemrsm
    divinemrsm Member Posts: 5,896

    meme, when I was diagnosed in 2011 with bone mets from the start, I had six rounds of chemo, a lumpectomy and 33 rounds of radiation. This all transpired over about 10 months and then I started on an AI, anastrozole. That kept me stable for seven or eight years. One tiny but powerful little pill a day. The drugs like Ibrance and Verzenio were not on the market at that time. I eventually did have some progression and have gone on to other treatments.


  • meme5
    meme5 Member Posts: 43

    had a PET scan yesterday and the results were good overall. No bone or lung Mets. Some uptake in the portahypatic area where diagnosis for metastisis was made. But the uptake in July was 7.2 and is now 4.3. There are still other smaller lymph nodes with activity but the findings state overall favorable response to Letrozole therapy. I have only been on letrozole for three weeks.

    The beginning of the pet scan report states " expected activity in the partially imaged inferior brain, extraocular muscles, pharyngeal mucosa, heart, liver, spleen urinary collecting tract and bowel".
    This statement threw me for a loop but I took it to mean the dye may have lit up but this seems to be my entire body. It does not further state any concerns with the heart, spleen, urinary tract or bowel, bones or lungs.
    So my questions are:
    1 What does expected activity mean?

    2. Since my uptake in the metastatic area of portahypatic decreased would that mean that my oncologist might just have me on the letrozole and not require Ibrance, etc for awhile or until the uptake increased with future scans? I don't want to go on other drugs until necessary.

    Overall I am relieved but know this is a lifelong journey and things can change. For now I am grateful!

  • anotherone
    anotherone Member Posts: 541

    it means it is a very good response to the treatment and you are unlikely to be suggested any changes.

    The results mean "normal activity" - so.e parts of our odyssey are more active than others normally.

  • olma61
    olma61 Member Posts: 1,016

    “Expected activity” is the normal metabolic activity of your body that is seen on the pet scan. The cancer shows “hyper metabolic activity” that is not expected in the organ that is being viewed

  • meme5
    meme5 Member Posts: 43

    Thank you both for your responses and helping me understand the medical language. I think I am please with this report but remain vigilant

  • meme5
    meme5 Member Posts: 43

    Forgot to ask..

    I have only been back on the letrozole for a little over three weeks. I am surprised that the letrozole is working so quickly. So does thisdrug start doing its work immediately as my results indicate?

  • chicagoan
    chicagoan Member Posts: 939

    Yes-letrozole started working immediately for me. I saw changes within 3 weeks and this was before Ibrance was added.

  • meme5
    meme5 Member Posts: 43

    So good to know

  • meme5
    meme5 Member Posts: 43

    At what point was Ibrance added after letrozole

  • chicagoan
    chicagoan Member Posts: 939

    I added Ibrance about a month after the Letrozole. I wanted to consult with my pulmonologist first and then it took a little time for insurance approval.

  • meme5
    meme5 Member Posts: 43

    I’ve been told by Medicare that my copay for Ibrance is over $5,000 a month which of course no one can afford. Have been advised that my oncologist office has someone in their office who can help me get it direct from pharmaceutical company for little or no cost. How do you pay for this expensive drug if you don’t mind my asking

  • chicagoan
    chicagoan Member Posts: 939

    Up until now I have paid nothing for Ibrance-my insurance and a co-pay card paid for it all. Starting in January I will have Medicare and a supplement as my insurance and I think I will be limited to co-pays of $2500 per year. I'm sure your doctors office will be able to help.

  • spookiesmom
    spookiesmom Member Posts: 8,149

    I was on ibrance/letrozole for about 3-4 years. My MOs office connected with the Patient Assistance Network. My Medicare Advantage plan picked up most of the cost, PAN paid the rest. I didn’t pay anything.

  • chicagoan
    chicagoan Member Posts: 939

    Thanks Spookiesmom-I'll see if I can get help from PAN too.

  • gigil
    gigil Member Posts: 896

    I am just starting Ibrance. There is a one time voucher from Pfizer to cover the first month. Even with my Medicare drug policy, my costs per year will be about $12000. We don’t qualify for any assistance. The one time voucher helps a lot. This drug is so expensive

  • believe60
    believe60 Member Posts: 86

    question on how quickly targeted therapies work, if they are going to work: I already asked about this situation in the bone mets thread, and am curious to ask again here since everyone on this thread takes ibrance. I was diagnosed metastatic in September with bone Mets. CT said 3, one was biopsied to confirm. Bone scan said none, just some “degenerative changes”. Recent hip pain sent me back in, and now by way of MRI they have decided the hip degenerative change was cancer probably from the start. The hip pain started just as I started ibrance and fulvestrant on the same day. I am 19 days into my second ibrance cycle. I’m worried it’s not working, but it is possibly too soon to say? Someone mentioned 112 days till it works. Very nervous cause they said spot in hip is 15 cm, which seems gigantic compared to the other 3 (which were in the 1-2 cm range). Headed to radiation of course. Thanks for any input.