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Ibrance (Palbociclib)

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Comments

  • letmywifelive
    letmywifelive Member Posts: 303
    edited July 2016

    eelder,

    Everybody's tumor marker numbers are different, everybody trends differently over time and tumor marker alone can not be used as a prognostic tool. It is at best a supplementary tool to radiographic techniques like CT scan, MRI, PET scan, Bone scan etc.

    The key to watch out is that how your tumor markers are aligning with your other tests. If for example, you are seeing gradual improvement of your lesions over time (verified through CT / PET / MRI) and at the same time tumor markers are also going down over the same time period then those are reliable markers for you.

    On the other hand if PET / CT / MRI is telling you something and tumor markers are trending in completely opposite direction or not changing at all, then you should not rely on those.

    You just got your first results on 27.29. Repeat it periodically and try to correlate those with other results. Then you will know.

  • faith-840
    faith-840 Member Posts: 926
    edited July 2016

    I have a question for those of you who still have one breast remaining after having a mastectomy and now have mets which are being treated with this protocol of Ibrance/letrozole. Do you get any breast pain in the remaining breast? I'm thinking it's the estrogen being suppressed but it certainly gives me something to think about. My first scan after three rounds showed tumors being reduced and I'm feeling ok except for the ongoing fatigue and other minor things. I really hate that my hate is falling out after going bald with the first chemo. Just finished round six and gave myself an extra day off by not taking the last pill, my stomach just couldn't face it. I feel like a rebel. :)

    Faith (in the future)

  • eelder
    eelder Member Posts: 152
    edited July 2016

    Thank you everyone for your responses. The test used on me is CA 15-3. My result was 20.8 on June 9th (the reference range my clinic gave me was normal = 0 - 25.0... but of course I wonder - what does normal mean?). This was the first TM test done on me (treatment started April 30th). Blood was drawn again today, but those results aren't ready yet. My first scan is July 18th. So, it sounds like I need to wait to see scan results and probably another TM result before I can make sense of what this all means.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited July 2016

    Lalady, I was wondering if you had any trouble on your trip. What a crazy feeling to have just missed that attack! Hope the rest of your trip was splendid! Your cruise sounds divine and so glad to hear of your good results! eelder, 20 on TM's is very normal. Mine have been as high as 500! I am ending my first round of Ibrance in a few days and hope they have decreased dramatically.

  • eelder
    eelder Member Posts: 152
    edited July 2016

    So, are tumor markers really just a gauge of whether or not the cancer is growing or not? Sounds like the number itself doesn't tell us much except when used comparatively to other results (scans) and to other TM results from the past.

    Assuming this is true, why do they designate a "normal range"? If TM's are merely to gauge progression/regression then I'm confused about having a normal range value.

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    Faith - I did not have my breast removed. I have pain in the breast with the tumor. But I have a similar milder pain in the other breast in a comparable location. That pain in the breast without the tumor is analogous to the pain you have in the breast that was not removed. My gut is that my body is dealing with some kind radical change in the breasts due to the treatment and I need to keep lymph and other fluids flowing in and out of the area. It was unnerving until I decided it was a healing pain and slightly unpleasant.

    >Z<

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    eelder - The three breast cancer tumor markers are antigens sometimes produced by breast cancer cells, but are also produced by non-cancerous cells and they can become elevated by non-cancerous conditions.

    To further confuse things, they can become elevated when cancer cells are dying. This is called a flare reaction and something I may have experienced. My CA 15-3 tumor markers went up 50% after I started letrozol/palbociclib, from 30ish to 45ish, even as the tumors shrunk 50%. So either that was dead cells or it was some unrelated non-cancerous condition causing elevated antigen levels in my blood.

    In this context, it is quite reasonable to question what normal means for cancer tumor markers. I do watch mine and compare them to scans in the hopes that I will find some meaningful pattern I can apply ... but I think I am years from that.

    >Z<

  • eelder
    eelder Member Posts: 152
    edited July 2016

    Thank you, Z. Goodness... all so confusing :(

  • Stage_IV_in_Montreal
    Stage_IV_in_Montreal Member Posts: 12
    edited July 2016

    Is everyone who is on Ibrance also on letroloze? My oncologist has prescribed Ibrance by itself. Things I read indicate that it won't work without the letroloze. Is anyone on Ibrance alone?

    Stage IV in Montreal

  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2016

    I haven't heard of anyone on Ibrance alone. Some of us are on it with Faslodex, which is also FDA approved in the states, and occasionally I've seen it paired w/Arimidex. I would absolutely question that recommendation. Ask your onc for trial results supporting his or her recommendation. I don't think there are any.

  • GG27
    GG27 Member Posts: 1,308
    edited July 2016

    Stage & Deanna,

    This is from the literature I rec'd from the Ibrance trial. The bold is mine.

    "may include treatment with a different endocrine therapy from the most recent type you have been using (such as Letrozole, anastrozole, exemestane, tamoxifen, fulvestrant) chemotherapy, a different endocrine thereapy combined with targeted treatment (such as everolimus and exemestane), no therapy or best supportive care"

  • Stage_IV_in_Montreal
    Stage_IV_in_Montreal Member Posts: 12
    edited July 2016

    Dear GG27 and dlb823 - thank you very much for the information. I think my onc really mishandled this, and this is the "coup de gras" - I have phone calls in to meet other breast cancer oncs and probably switch over. This hasn't been the first issue.

    But thanks indeed for the Ibrance info.

    Judy P (Stage IV in Montreal)

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    Stage IV - At a minimum a second opinion is in order. You may be a special case, but I've never heard of Ibrance prescribed without hormone therapy. It may work great, but it hasn't been tested.

    >Z<

  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2016

    Dee, thanks for supplying that info. I'm guessing it means that "no therapy" is one of the trials arms, but I don't think there's any rationale for RX'ing Ibrance alone yet -- unless Montreal's onc was enrolling her in that arm of the trial, assuming there is one. That had actually occurred to me earlier when she asked about Ibrance alone -- that is, if "no therapy " even means Ibrance only (not sure). If it possibly means one arm will get absolutely no meds at all, I would NOT risk that! And what the heck does "best supportive care" mean? Sounds like Hospice! Yikes!

  • GG27
    GG27 Member Posts: 1,308
    edited July 2016

    Deanna, I asked about it, it's not just one of the arms of this study, the study is only regarding the dosage of Ibrance. If you have exhausted all the AI's they will still give you Ibrance. And best supportive care is hospice, it can be used as a "hail mary" last ditch treatment if all others forms have been tried. I will ask again on Tuesday when I see her (if I can remember! ) cheers, dee

  • artistatheart
    artistatheart Member Posts: 1,437
    edited July 2016

    My liver enzymes have spiked again after doing one round of 100 mg Ibrance. She now is switching me to 75 mg for one last try on this. I have not read about any others who have had liver enzyme issues on this med. Seems like I get all the low percentile luck. DeNovo, ILC and now the enzymes. I am feeling pretty discouraged....

  • eelder
    eelder Member Posts: 152
    edited July 2016

    Artistatheart... I'm so sorry :( I can only imagine the frustration. Have they ruled out anything else that could be causing the spike? The liver is involved in SO MUCH.... is it possible it's NOT the ibrance?

  • lalady1
    lalady1 Member Posts: 530
    edited July 2016

    Artist! Rooting for you. Let's see how the #75 does for you. I'm switching to #100 for round #8. And going to Spain in 3 weeks. Take that cancer! ole~. Hugs (())

    Claire

  • faith-840
    faith-840 Member Posts: 926
    edited July 2016

    <Z>. Thanks for your reply. It's strange how this breast pain kinda comes and gos. The day I asked the question, it was bad and then the day after that it was gone. Now tonight, it's here again but not as bad.

    I just received my next batch of meds today and I noticed the letrozole was not the usual Teva brand but Apotex. I called the pharmacy and asked if there as a reason for the change, short answer, no. It's probably a money thing, maybe one is now cheaper than the other. I remember reading somewhere here on the boards, that some women have more side effects with different brands so I did a little googling and couldn't find as much info for the US, most of it was for UK brands and a lot of women seem to have less trouble with the actual brand Femara than a generic one. In doing a little reading I saw something I had not seen before. "Breast Pain is a rare side effect that should be reported to your MO. How's that for making us feel good? Not! I really don't believe it's a big deal, just another thing to think about. I do remember that I had a lot of breast pain in the "good" breast when I was on Tamoxifen 20 - 25 years ago. So I'm thinking this is similar. But, I am going to watch carefully for different SEs on the new generic brand. Maybe, it will be better. :) we can always hope.

    Artist, I'm so sorry to hear that your liver enzymes are acting up. I do remember reading here that this has happened to others on these drugs and sometimes a dose reduction is used to see if they improve over time. While I am not currently taking milk thistle, others here are and it's supposed to help the liver. I wonder if your onc would approve of trying that or some other supplements to see if things improve. Hang in there, maybe the 75mg will work for you and it still keeps the cancer at bay. Prayers and best of luck toyou.

    Faith (in the future)

  • faith-840
    faith-840 Member Posts: 926
    edited July 2016

    lalady, good for you going to Spain. You give me hope that we will one day be able to get back again to our beloved Italy. We've been there several times and my DH just loves it and I felt like when this cancer happened again, we would never go back, now I have hope that it might one day be possible even though we are are getting a "little" older. That's really an understatement but you're only as old as you feel, right.:)

    I'm curious as to why your onc reduced the dose of your Ibrance. Is it because you were having so many SEs or because you just hope to feel better?

    Faith (in the future)

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    Faith - my breast pain comes and goes. It seems to be quite common on this forum.

    Artist - One thing to consider trying is a really good quality milk thistle extract (Silymarin). It is the standard go to supplement for liver function. Supplements are always a bit of a hail mary but I'm hoping there is some way you can stay on Ibrance. I take it. It definitely doesn't interfere with the Ibrance and my liver function has been stellar, despite liver mets.

    Long term survivor also has some trick involving taking medication by letting it absorb under your tongue. Seems to be widely used to reduce the impact of medications on the liver. I don't understand it, but you might PM her to find out whether it would possibly apply here.

    >Z<

  • artistatheart
    artistatheart Member Posts: 1,437
    edited July 2016

    eelder, We have pretty much isolated it to Ibrance this time as we have been monitoring blood draws. I was fine until we started up the Ibrance again. In three weeks both numbers shot up to over 200's. Thanks lalady, Rooting for you too. Have a fabulous trip to Spain! Faith and Z, I will ask my Onc about the milk thistle next week and will probably give it a try. My liver function too has been great besides the enzyme spikes. Want to keep it that way. I don't believe you can do the under the tongue trip for Ibrance as it says to swallow it whole with no breaks in the capsule. Thanks!

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited July 2016

    I was told that milk thistle is in question regarding positive estrogen bc?

  • eelder
    eelder Member Posts: 152
    edited July 2016

    I take milk thistle. My holistic doctor HIGHLY suggested it, my nutritionist did too. I cleared it with my oncologist and she said fine. No interactions and no concerns. My liver function is great (as of now). I too have three liver mets so obviously this is the key area of concern.

    Don't know about anyone else, but I take high doses of it during my OFF week from ibrance. It helps clear the liver of all the residual junk. I take it a few times a week during my on weeks.

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    I am ERPR+ both MO and my complementary oncologist advised me to take silymarin. I am taking 300mg per day. There are no clinical trials for silymarin in ERPR+ women, so if there is an issue, it is speculation. I am having good results so far. But, of course, there may be an issue. So many unknowns when you take any medication. Do you have a reference for this?

    And while we are on the subject of tricks for dealing with the side effects of this treatment with supplements, claratin (loratadine) is all the rage on other forums for reducing fatigue on ibrance.

    And my MO suggested evening primrose for hot flashes.

    I hate taking so many pills but I am also tired of these side effects, so trying both this cycle.

    Artist - Whenever I read about abemaciclib, I think about you. It's a CDK Kinase inhibitor like ibrance, but works a little differently. It's in clinical trials at the moment. Something to ask about. Remember that even if you can't get into a clinical trial, you can get drugs that are in development (not FDA approved) through compassionate use programs.

    >Z<

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited July 2016

    Z- Both milk thistle and tumeric had articles that suggests it is not proven for sure that it can interfere but cautions on maybe staying away from both- I like to think that maybe sometimes less is more...

    .https://ww5.komen.org/BreastCancer/Milk-Thistle.htmlhttps://ww5.komen.org/BreastCancer/Milk-Thistle.ht...

    (Hormone-sensitive conditions such as breast cancer, uterine cancer, ovarian cancer, endometriosis, or uterine fibroids: Extracts from milk thistle PLANT might act like estrogen. If you have any condition that might be made worse by exposure to estrogen, don't use these extracts. In contrast, the more commonly used milk thistle SEED extracts do not seem to act like estrogen.

    Hormone-sensitive condition such as breast cancer, uterine cancer, ovarian cancer, endometriosis, or uterine fibroids: Turmeric contains a chemical called curcumin, which might act like the hormone estrogen. In theory, turmeric might make hormone-sensitive conditions worse. However, some research shows that turmeric reduces the effects of estrogen in some hormone-sensitive cancer cells. Therefore, turmeric might have beneficial effects on hormone-sensitive conditions. Until more is known, use cautiously if you have a condition that might be made worse by exposure to hormones.

  • Kaption
    Kaption Member Posts: 2,934
    edited July 2016

    Hi all,

    I'm no longer on Ibrance/ Letrozol- just Faslodex for now ( feeling great-but no real info yet except good white & red blood counts, etc). Anyway, I check in here once in a while because you ladies are so interesting:-)

    Just a note on the breast pain- and I'm not sure this is exactly your question. I had both breasts removed, but get a sharp pain once in a while on my left side. I was concerned that it might be the implant, but my RO believes it's referred pain from my spine (traveling across the nerves on my ribs) because it is a sharp and occasional pain. Makes sense to me.


  • faith-840
    faith-840 Member Posts: 926
    edited July 2016

    Kaption, thanks for the note about the sharp pain. I also get that on occasion on my implant side. While I don't have a lot of spine issues, I do have lots of aches and pains, old age? LOL. I think referred pain from something causes lots of things.

    Faith

  • Stage_IV_in_Montreal
    Stage_IV_in_Montreal Member Posts: 12
    edited July 2016

    Hello All - I called the pivot nurse who talked to the onc who added the letroloze. So now I will have the Ibrance with letroloze. But I had to catch this. And it turns out switching oncs is not easy.


  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited July 2016

    So, per Komen, it looks like milk thistle seed extract is fairly safe for those with hormone + cancers.

    Stephen Harrod Buhner in Herbs for Hepatitis C and the Liver suggests toasting the seeds like sesame or hemp seeds and using them as a snack or garnish. He's an herbalist with extensive practice who doesn't mention estrogenic effects of milk thistle. btw, his work with Lyme is highly respected in the herbalist community. http://www.gaianstudies.org/index.html

    Here's cancer.gov on it, again no mention of hormonal effects http://www.cancer.gov/about-cancer/treatment/cam/h...

    But, vitamin retailer (with a pony in the show) had this to say http://vitaminretailer.com/the-positive-estrogenic...

    Who knows?

    I happily ingest milk thistle seed capsules because my liver is swollen with cancer.

    We must each make our own decisions based on the best possible advice - too bad it changes so often!

    well wishing, Stephanie

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