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New here, found out 4 days ago MBC

claireinaz
claireinaz Member Posts: 662

Hi all,

I've written long posts on other discussion threads, but I'll keep it short here. I feel like I'll get more responses at this board till I know more about my dx and what other threads I need to check.

I was dx 4 days ago with lung/abdomen and probably ureter mets. PET scan revealed.

I'm not ready to hear stats about how long women typically live with a dx as mine.

I understand already, reading a lot on this board, that NONE of this is a cakewalk so I don't need reminders of that. I get it.

I'm too terrified to find out more-it's bad, very bad, no doubt. My Mayo oncologist didn't know I hadn't been told about the dx so she kind of just jumped into the news on Friday rather bluntly and I stopped listening for about a min because I have terrible PTSD and I black out when I have triggers. I blacked out so I don't remember a lot of what she said. Husband was in shock too.

As you can see I was ILC in 2011 with + nodes; I know that I was high risk. On some kind of AH/AI for 11 years. She said the cancer just became resistant to the drug and that I had probably had this for some time. I don't know what my CTCs are, grade, subtype though she feels it's most likely ILC. Biopsy on Dec. 12. Will know more then.

I had no outward symptoms other than bladder urgency that began in Jan and progressed. Subsequent CT/MRI and PET revealed the news. It's not in bones, but I know soft tissue is worse. I still "feel" fine. Doc thinks that's good. Why?

She's testing genetic markers, mutations, and the like. My blood work was fine, always was, even this last check last Friday.

Do I really need to know every place it is, how big each place is, etc. right now? Even thinking about my patient portal and all the test results makes me break into a sweat and ups my already off the scale anxiety.

She's already ordered lomotil for me from my pharm, and is beginning me on a regimen of Faslodex and Verzenio soon. Does that seem like standard of care? She didn't seem super urgent to get started, but does that mean anything? I'm not getting infusions (I guess this is just 2 pills a day and injections). Does this regime work for most, at least for a while?

I'm scared. I am more scared than I've ever been in my life. I feel like my life is over. In shock and grieving my life. And yet I have a tiny bit of hope from time to time because I'm in such good shape already, no co-morbidities at all and that Mayo is a good hospital.

I need good stories right now. No need to share hairy scary details. Later I can face the grimness of it all….maybe.

XXOO

Claire

PS I dropped over to the Lobular Sucks board but it was so terrifying I can't go there right now. And it doesn't seem very active. And I hate the title of the board. Does it really suck? All of it seems to suck.

Comments

  • bright55
    bright55 Member Posts: 146

    Hello Claire

    Bigge huggs from a land far away ..visiting Egypt last two weeks...never imagined I would visit

    We are so lucky to have access to new drug combo therapies... its now Eight years for me ... we are all different in our treatments and some work some dont

    Starting and moving forward ..always keep busy..garden weeding long walks outdoor trips were my go to ..completing a uni degree

    Sending good vibes

    All the best

    Bright in hope

  • sf-cakes
    sf-cakes Member Posts: 506

    Hello Claire:

    I am so sorry that you're now dealing with MBC. The treatment your doctor wants you to start does sound appropriate - my mets were found in my spine so I first had highly targeted radiation and then started on Ibrance and letrozole. I've been on that combo for almost three years now. Ibrance, Verzenio, and Kisqali are all targeted therapies (CDK4/6 inhibitors) that have recently become standard of care for first treatment of ER+ MBC.

    I had shared on one of your other posts that I was my husband's caregiver until he passed last December. The main side effect I have from these meds is fatigue, but I continued to work and to take care of my husband for 2.5 years, before I decided I needed a break from my job (more so for emotional reasons, honestly). I have some mild pain in my back, but am still able to garden, walk, dance, drive, visit friends out of state, go to the symphony and the opera, etc.

    My life is much quieter now that I'm not working and not taking care of my love, but it is peaceful and I remain grateful for it. I did not believe I would still be here, three years later, when I was first diagnosed. It took many months before I felt like I could fully breathe again. Sending you hope and love.

  • cookie54
    cookie54 Member Posts: 617

    Hi Claire I remember feeling so devastated when diagnosed with MBC it's terrifying! It's not something that's easy to accept and I don't really totally accept it some days. I have learned after a year plus to just try to take it one day, one scan at a time.

    Treatments have come along way since I was first diagnosed in 2016 and they continue to evolve. Give yourself some time to digest what is happening. Sending positive vibes, hope and a big hug.

  • claireinaz
    claireinaz Member Posts: 662

    Thank you cookie, bright and sf. Your reassurance gave me a little hope. I guess the feeling is like your life died suddenly, at least the one you thought you would have, and it's like losing a treasured family member. I'm deeply in grief right now.

    I reached out to Mayo for a social worker and psych, and I'll be getting some support. Frankly my head is what needs help right now. And because I've had this experience before, I am afraid of talking to anyone about it because I'm so vulnerable and split wide open that any kind of response, however kindly intentional but clumsy, can hurt me so much.

    I reached out to my MO asking when I begin tx. I'm anxious to begin. When she broke the news last Friday, I immediately had a PTSD attack and "blacked out": I look awake and alert and can speak, but I lose my memory and can't hear what people are saying when this happens. I know she told me but I'm not sure I'll begin right away or after the biopsy on Dec. 12. She called in an rx for lomotil, which I know is supposed to help the side effect of diarrhea. I think it's Verzenio that causes it.

    Claire

  • moderators
    moderators Posts: 7,685

    @claireinaz, we are so sorry to hear this news. We are sending you big, big hugs! We know being diagnosed with MBC is devastating — but please know we have so many amazing members here who are thriving after their diagnosis, and have many, many happy years on treatment. One day at a time, you can do this.

    Verzenio and Faslodex are indeed a common first line of treatment for MBC. Click the links to learn more about these treatments.

    In addition, we wanted to point you to the Verzenio for Stage IV thread, Faslodex Girls thread, and the Lung Mets thread where you can get more support from others with a similar situation.

    Also, we wanted to invite you to our weekly Zoom meetups for MBC — we offer 3 per week and our members find them to be incredibly informative, supportive, and a respite for those managing a similar diagnosis. Click the link to register for any or all of our weekly MBC meetups — we'd love to support you there as well, and you'll be welcomed with open arms!

    And, when you're ready, you may want to visit our section on Metastatic Breast Cancer for more information about what to expect with this diagnosis.

    We hope this helps and that you get more answers soon. Sending you lots of love and please let us know how else we may be able to help.

    —The Mods

  • lillyishere
    lillyishere Member Posts: 769

    Claire, I'm truly sorry to hear the news. I can only imagine how devastating it must be after investing so many years in exemestane and maintaining a healthy lifestyle, only to receive this type of information. Sigh!

    I recently heard a scientist mention that Exemestane and Tamoxifen may not be very effective for ILC. I personally take exemestane due to its fewer side effects.

    On a positive note, when I was diagnosed with Stage 2 ILC, I was informed that doing nothing at all would still grant me around 10 years of life because ILC tends to grow slowly. I assume that, in your case, opting for no treatment could also provide you with a solid 10 years. However, if you decide to pursue treatments, logic suggests that you might have many more than 10 years ahead. During this time, advancements in research and treatments are likely to emerge.

    Sending you strength and support during this challenging time.

  • claireinaz
    claireinaz Member Posts: 662

    I'm hearing horrible, horrible things about Verzenio. Basically it sounds like my life (young 65 y.o., active, yoga, moderate hiking, happy) will be over when I start on the drug because women say "aren't even able to complete a grocery shop", they are so tired, and diarhhea just takes over your life. I visited the Verzenio board and the Faslodex one this morning and it terrified me so much I just went through a giant crying jag. This is a nightmare I can't wake up from; a haunted house I am imprisoned in. My husband is nearly 80 and can't do everything since he's being tx for prostate cancer. Will we have to move to a care home?

  • chicagoan
    chicagoan Member Posts: 939

    Why can't you ask for Ibrance or Kisquali? I have been on Ibrance for over 7 years and lead a very active life. Kisquali has been shown to be more effective than Ibrance and doesn't seem to have as bad side effects as Verzenio. Push your MO to explain why they are prescribing Verzenio.

  • aprilgirl1
    aprilgirl1 Member Posts: 743

    @claireinaz - I concur with Chicagoan . Who I look up to and had the great fortune to meet in person for coffee last year :)

    I've been on Ibrance and faslodex for 4 years and feel great. I did need to have a dose reduction which is common due to low white blood counts but - that didn't make me feel tired , but we need to have decent white blood cell counts to keep our immune system ok.

    My MO mentioned moving to verzenio in lieu of a dose reduction on Ibrance but I sell real estate and can't risk the GI issues - I'm in my car and in strangers homes with buyers .

    Also, the faslodex is given twice just the first month - after that it's once a month and I get my blood test on the same day that will tell me if i can start my next cycle of Ibrance .

    recap: 4 years on Ibrance , working full time and feel good . You have options !

  • sf-cakes
    sf-cakes Member Posts: 506

    And I agree with Aprilgirl and Chicagoan! Ibrance, Kisqali, and Verzenio are all targeting the same pathway, so it makes sense to let your doctor know that you are a very active person and you want to remain that way. I have very occasional loose bowels on Ibrance, but that's usually because I ate something a little too rich. I've been on it for nearly three years now.

    Also, I'm certain that lillyishere's comment about letting ILC grow for ten years came from a place of love and support, but no doctor is going to recommend that you let metastasized cancer just grow. The importance of stage 4 treatments are to preserve the functioning of any organs where the cancer is (eg, lungs, liver, bones, brain), and fortunately there are newer treatments that can do just that and give us a good quality of life.

  • lillyishere
    lillyishere Member Posts: 769

    I apologize for any confusion. My point was not to dismiss the importance of medications for stage 4 conditions. Instead, I was saying that if, for 10 years, someone could go without medications, it's intriguing to consider how much longer life expectancy could be extended with the advancements in today's medical treatments, 15, 20 years and more.

  • claireinaz
    claireinaz Member Posts: 662

    I will ask the doc why Verzenio, but she said "with the other drug it could cause a long QT" and she'd want an ECG or EKG (not sure which). She knows how active I am—they all are aware. I don't have heart issues.

    So Ibrance instead of Verzenio, and then Kisquali after that?

    Lily is here, I didn't take your post any other way than speculation. I remember someone on another board saying that "Aromasin isn't as effective on ILC" as Arimidex, which I had terrible side effects with. So that particular comment made me feel a little defeated, like I should have stayed with Arimidex and I wouldn't have been here. My blood work came back great every six months which is what my MO checks, along with any reported SE, and we just kept going with the Aromasin because it seemed to be working. If I start second guessing myself I'll literally go crazy.

    Claire

  • chicagoan
    chicagoan Member Posts: 939

    If it was me, I would try to get Kisquali first. It wasn't available when I started Ibrance. If you can't get Kisquali, then go for Ibrance. Verzenio is now sometimes prescribed after a person has progressed on Ibrance. You could take that approach with you MO-save Verzenio and start with one of the other CDK4/6 inhibitors.

  • olma61
    olma61 Member Posts: 1,016

    I’m not on any of these drugs but just a note about expected side effects - remember that people who are suffering the worst side effects are the ones most likely to post. I have few to no side effects from herceptin but it would be redundant for me to keep going to the Herceptin thread to say “Hi, I feel great! Piece of cake with ice cream on top. Bye bye now”. As it stands I think I’m a little too cheerful sometimes but that’s a different subject 😉

    Now, I am not saying you shouldn’t take the very good suggestions these women with experience with these drugs are giving you. But there is reason to keep fear to a minimum while you go through this process of getting a treatment plan set up. In the beginning, I did ask for the AI that I thought would have the least negative side effects, the rest of my treatment plan could not be negotiated unless I wanted to forego treatment but I did use my power of choice where I could!

    I also think you can ask for dosage reductions if needed with these drugs, others please correct me if I am wrong about this.

    Gentle hugs for you Claire, I wish you peace and strength as you go through this process.

  • cure-ious
    cure-ious Member Posts: 2,705

    Claire, She probably isn't suggesting Ibrance because it doesn't have an OS (overall survival) benefit, and its the Kisquali that has the QT issue, but how much of an issue is that for you? they just do some tests. Verzenio is the least specific drug, and many get cramping and diarrhea, which is because it inhibits another kinase called CDK9 (which the other more-selective CDK4,6i drugs don't) and need to reduce the dose. But all of them are wonder drugs and ILC is notable for being very endocrine-sensitive, ie, you can hope to get a really good response. And by the time you would need to switch treatments, new options will probably have opened up so no need to worry about that now. Assuming you were on an AI at the time of progression, you probably already had genomic testing or biopsy, because you would want to be sure that the cancer has not acquired ESR1 mutations (*esp Y537S) because, if so, then Faslodex is not going to work well or for long, and so you'd maybe choose a clinical trial with an oral SERD or PROTAC (ARV-471) in combination with a CDK4,6inhibitor…

  • claireinaz
    claireinaz Member Posts: 662

    Cure-ious (and everyone). Thank you. Since I blacked out when she shared the news about the progression (it's severe PTSD: I look awake, I feel awake, but I can't hear anything for a few min), I don't remember everything she said, but I think there was a contraindication with trazadone which I take for sleep (and am willing to wean off of) and Xanax (same thing, can wean off, give me something like Valium or Ativan instead, then). I have a telemed meeting with her on the 18th to ask questions. It was the soonest I could get.

    Perhaps the wait is because I don't have a biopsy yet and and pathology? Could that make a difference in what I get? Biopsy in six days.

    I also found out that BCBS has no order for fulvestrant and had an order for verzenio but then it was canceled on the same day so I have to get to the bottom of it SOON. will call nurse navigator at the Breast Center at Mayo next and I've already left messages in my patient portal.

  • threetree
    threetree Member Posts: 1,158

    Claire, needing to get a biopsy and the pathology results can cause a delay in when you get your new meds. It can also help determine just which meds you get. The nature and character of your original pathology could have changed, and that can change the med situation. It sounds so trite, but hang in there.

  • moderators
    moderators Posts: 7,685

    Hi Claire,

    Here are some research news articles about why biopsying metastatic breast cancer can help guide treatment decisions:

    https://www.breastcancer.org/research-news/20100607b

    https://www.breastcancer.org/research-news/some-breast-cancers-may-switch-her2-status-if-they-come-back

    https://www.breastcancer.org/research-news/20120620

    Also this page includes some questions to ask your doctor and some more guidance about how to make a treatment plan with your team:

    https://www.breastcancer.org/types/metastatic/treatment

    We hope this helps and that you get answers and direction soon!

    —The Mods