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Ibrance Users greater than 24 months

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  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2020

    Anewbreath, my TM (Ca15.3) is a reliable indicator for my cancer.

    For the past 3 years, it has fluctuated back and forth between 39 and 59. That is my base normal. If the TM trends upward over a 3 month period, my MO will start searching for the reason via scans.

    Our plan is to stay on current treatment for as long as possible, even if there is minor progression.

    S

  • intolight
    intolight Member Posts: 2,134
    edited January 2020

    SandiBeach and Micmel, I am finishing cycle 44 today and doing OK. I had minimal progression in November scan (too small to biopsy) so my scan early February should tell us more. In the meantime we are not considering a change since we know the SEs on this combo and it has been working. We don't follow my TMs since even at onset they were fairly low although if they rise sharply we may pay attention. The chant "Four more years" sounds good right now.

  • Anewbreath
    Anewbreath Member Posts: 122
    edited January 2020

    Thank you Sandibeach and intolight! Sandy our stat’s are similar and that gives me hope! It appears to me MO is also approaching treatment in the same manner. So, a small fluctuating Ca15.3 moving forward, within a range would be ok on I/L/X. Im just nervous Ca15 will just keep going up as it came down. Praying it stays stable for a long time. I’m joining in on the ibrance chant for all of us! Thank you

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2020

    I should mention that I was on 125 mg Ibrance for 3 months, then reduced to 100mg.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited January 2020

    Sandi, just found these cool new threads you start. Love having new ideas. I just finished cycle 44. I've probably taken 5-6 cycles off for various reasons. Pet Jan 3. No results yet. I'm waiting to see my new (third) MO on the 14th. My largest lung nodule grows about 1 mm every four months. That's how often I have pets. Consideration of a new tx may be in my future. I will resist.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2020

    Hi Jaycee49. My latest liver MRI showed suspicious new areas. So the IR will attempt a FNA bx via ultrasound.

    A PET will be done to look at metabolic activity.

    My MO plans to keep me on I/L as long as possible.

    Many factors are involved, such as, if new mets are confirmed-is it fast growing or stable, hormonal status, and ESR1 mutation.

    If a change is needed and I am still ER+, then switch to Ibrance with Faslodex. It is a process, I should know a plan in about 2 weeks. Meanwhile, I feel fine, liver enzymes and T bil are normal.

    I did stop all my extra supplements..only take now Citacal, Vit D3, Vit K2 for my bone health- plus the 6 month Prolia injection. Also Miralax and night with lots of daily fluid.

    Come on oral SERDS..where are you?

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2020

    I just met with MO. If liver progression is confirmed, then I will be switched to Fulvestrant and Versenio. Her research and peer input, says this is a better choice than staying on Ibrance with the SERD. Apparently, the thought is to really confuse the cancer growth by total switch.

    Interestingly, she does not base a change from AI to SERD on ESR1 mutation..just progression from scans. I am fine with that..don't want liver mets to have any chance to keep growing.

    I do feel VERY fortunate to be in my 40th month of Ibrance with liver dz.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited January 2020

    The last time I saw my lame duck MO, she mentioned another lung biopsy, Faslodex as next tx (no mention of with Ibrance or not), Tamoxifen (??), and how I should only do dental appts when my white count is highest. Even for cleanings. She had never said any of this before. When I see my new MO tomorrow, I'll get Pet from Jan. 3rd results. New doctor, new conversations. Should be interesting.

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited January 2020

    Jaycee, huge welcome to Sandi's thread... I feel gratefulyou're here and we'll benefit from your insight! Also recently changed my MO from the inexperienced but keen (gone back to her home country, but she was lovely) to the boss woman... no messing and knows her stuff. I do think we need to be constantly questioning and just that bit cynical ( which you do brilliantly ).

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited January 2020

    Cross-posted on Ibrance thread.

    My new MO is a keeper. Because he told me my recent Pet scan had no new activity? Maybe but I just like him. I got him talking about a wide variety of topics and he was in no rush to get rid of me. (Rare) We don't agree on things like topical estrogen use for ER+ patients (like me) but he was open minded. He is willing to test my blood estrogen after I try using a small amount. (I already did a baseline.) He is also against medical aid in dying for which I am a very strong advocate. He seems to have been traumatized by a case in his early years (internship, residency) by a patient with leukemia. I really like that he felt a profound empathy for this patient. This is a good guy. His news for me was good, too. My one largest lung nodule continues to grow VERY slowly. I call it lazy. He called it stubborn. Why? Because all 25 of my other lung nodules are inactive. I've never asked about them before. My first MO told me I had 26. I never asked him because he was such a jerk. He also never offered the info. My second MO was too nice. I never wanted to push her about anything. New MO also told me all my bone lesions (ALL? I thought I had one on my shoulder bone. Turns out I had several, femar, sternum, a few vertebrae plus the shoulder.) are also inactive, sclerotic. Good news all around.

    I don't know if it was my imagination or not but the office and chemo suite seemed quieter, less hectic. They are down from four MO's to three. I even got to sit in a recliner. My nurse seemed less harried. The pharmacist on my palliative care team brought me some research on topical estrogen use for breast cancer patients. This is what medicine is supposed to be but I never thought I would see it here.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2020

    Jaycee..so it looks like you are staying on I/L? Wonderful.

    My Ultrasound prior to scheduled liver Bx showed nothing to biopsy! Thank you MRI for the confusing results...So PET scan next week.

    I will have an interim MRI of liver in 2 months.

    I/L still the plan.

    P.S. Estriol topical cream for 2 weeks and that is all MO would approve while on Aromatase Inhibitor. I think I wore her down..might regret. Also I am going to a pelvic PT to strengthen VayJayjay. Who would have thought that? All gratus to 3+ years of letrozole. Ha.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited January 2020

    Sandi, yes, I/L is the plan for now. I asked when WOULD he consider changing tx's. He said if the lung nodule doubled in size between Pet scans. Hmmmm.

    Two weeks of estriol will not do much of anything. The therapy needs to be on-going for months. And taking the letrozole will just bring the dryness back anyway. How long did you experiment with non-hormonal moisturizers? I used one every night for four months to get to where I could SIT comfortably. I have maintained that with about twice a week use but I'm looking for more. Sex would be nice. That's why I am starting 1 mg estriol plus 3.25 mg DHEA tonight. Bezwecken 1x plus. You can buy it on Amazon. They also have 1x (1 mg etsriol) with no DHEA. The research my pharmacist gave me looks a little fishy. I reminds me of the studies done by the makers of Intrarosa to prove it was safe. I need to look at it again. If I can find the links, I'll post them.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited January 2020

    https://www.ncbi.nlm.nih.gov/pubmed/31290076

    https://www.ncbi.nlm.nih.gov/pubmed/27997350

    https://www.uptodate.com/contents/vaginal-dryness-beyond-the-basics

    These look legit. I'm not sure why she gave me the last one but it is interesting. Maybe you could convince MO with them.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2020

    Jaycee..you are thoughtful to share those links.

    Early on with letrozole, I used many OTC products and found the best moisturizer for me was coconut oil for vag support.

    The problem that I have been experiencing is urethral wall collapse, causing a caruncle which makes urinating difficult. My UroGyn said a two week treatment would reverse this condition. I wonder myself how long this will maintain urethral health and if it needs recurrent treatment. I will see.

    We are "long time users" of Ibrance (plus antihormonal). I think it is good for our peers and new users to see we are still managing our disease with this combo, even with the threat of progression slowly appearing. Plus we both have visceral disease, you..lung, me..liver.

    Hope other long time users chime in, especially with chronic SEs and how they manage with this combo. My intention is not to take away from the Ibrance thread as that is a very important place for us. I just want to recognise long time users and discuss what it is like for us.

    S

    Cycle #40, starting year #4

  • phoenixawj
    phoenixawj Member Posts: 4
    edited March 2020

    Hi.

    Kind of new to posting but NOT new to MBC. I started Ibrance Nov 2015 at 125mg with Letrozole and xgeva monthly. This is the first month I had to pause my Ibrance due to some shortness of breath and increased heart rate. So that is like 50 something months on the same dose! I've had scans and my 3 lesions on my liver have all shrunk by at least 50%...the tiny "innumerable" spots are gone. The main lesions in my bones are showing either decreased or zero activity.

    The first 2 years after starting Ibrance..I had joint pain and some fatigue..the week off the med.. was the worst..I couldn't wait to start it again. I managed to live my life as if nothing was going on..in fact...I never told anyone but my boss at work and my husband. NOT my family, not my kids, not my friends.. just work people..(they still don't know) These last 2 years.. the side effects are catching up with me.. I'm exhausted, my hair is thin with patchy hair loss diagnosed as an auto immune thing, but whatever. its OK. My skin hurts on my shins, i have tingling in my feet and my fingers are not always cooperative and my eyes tear CONSTANTLY if its windy out.

    My neutrophils have dropped below 1.0 but I never stopped the treatment.. I promised to go home and stay there. I was just always careful with hand washing and being aware of my body and fevers. since i started treatment only had 3 infections, cellulitis once and pneumonia 2x. even now with the SOB and dry cough.. all of the pulmonary tests and ct scan I just had does not show a definite pneumonitis..my Onc wants me to hold it for 2 weeks.

    So that is my story (partially) but this treatment is DOABLE and can be successful!! I'm hoping to get back on it for my next go round

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2020

    Phoenix, I am in awe of you. 50 months on I/L with liver and bone disease. And only a few know of your metastatic cancer.

    I am happy your mets are behaving.

    Thank you for popping in with your positive story. Long time users need to hear what you have experienced and how you are currently managing.

    I will be thinking of you and hope your SOB will resolve soon.

    S

  • Anewbreath
    Anewbreath Member Posts: 122
    edited March 2020

    Phoenix - this is exactly what I needed to read today! I’m speechless that you have been on Ibrance125/letrozole/Xgeva for 50 months!! With bone and liver mets...and you have seen met regression!!! I was wondering if the Treatment combo actually kills and gets ride of tumor cells or if they just become inactive while on ibrance. I’m heading into my 21st month with the same Treatment and stat’s. I feel so blessed to be able to manage my active life while on this protocol and pray that will continue for as long as possible.
    Can I ask, do you take any supplements or do anything that you think makes this treatment work so well for you? Also, do you get monthly TM drawn are they accurate with your disease? Thank you so much for sharing with us

  • phoenixawj
    phoenixawj Member Posts: 4
    edited March 2020

    Hi Ladies...


    Thank you for your positive words..yes its been 52 months. I have been so blessed. I have the BEST worst luck.

    My first Dx was July 2008..I was 38 yo. no history. came out of left field.. I was ER/PR+ and Her2+..this was a few months after the miraculous discovery and approval of Herception. Which I truly believed saved my life...after the regular BS, lumpectomy SN removal along with 28 other nodes (3+), stage 2, Zometa 2yrs, Herceptin1 yr, clinical trial of Tykerb 1 year. Tamoxifen for 6/7 years.. all was good. I was blessed and so thankful for the time.

    Fast forward.. Sept 2015..right side upper gastric area pain, I dealt for 2 days then went to ER after work..Dx..Gallstones...If that hadn't happened then i would not have gotten the abdominal CT (2nd blessing)....which showed 3 suspicious spots on my liver and my abdominal lymph nodes were enlarged..YUP.. I knew.. I dry heaved for a bit, nearly fainted then went home..***sigh*** somehow I managed to get seen right away a petscan within a week. After 2 liver biopsies (first did not have enough material to show Her2 status). They wanted to cookie cutter me into a standard treatment.. but I refused. Sure enough.. the 2nd biopsy got enough material but was no longer Her2+. That was my 3rd blessing in disguise.. because now I was approved for the 2nd life saver..Ibrance.

    My 1st TM were 200, a month later over 600, started I/L xgeva..and they steadily dropped. I have had months when they would climb 10-15 pts..but they always return to 30-45 or so. I gave up my hectic, I can do do everything schedule, I take time for myself, I do not sweat the small stuff(its mostly all small stuff) and I started yoga 2 years ago. I do a gentle YIN class and was doing a quiet restorative/meditative class. My decision to keep it to myself is a whole other story.. but I do believe that by not putting it out there.. I haven't given it any energy. I am not defined by it, I wanted to be treated like everyone else. I do take Vit D 5000 daily (sometimes i forget) and an Ativan at bedtime. For the last year I have been taking CBD oil under my tongue at bedtime to ease some of the joint pain. Other than that.. I do the same things I have always done. I am definitely more tired.. and feel 70 not 50, but I did mange to go to Disney World last Nov to celebrate my 50th birthday. I kept up with 3 teenage boys for 5 days..we hit every single park walked 20,000+ steps a day. As long as I was able to get an hour nap in the afternoon I was good to go. (thank God for compression socks.. lol) So blessed for the chance to make lifelong memories.. Happy

    Yoga has been a wonderful journey..I highly recommend it.. It gives you a chance to quiet the noise and puts things in perspective.

    I wish you both luck and send positive thoughts and healing vibes. I thank you for reading this and reaching out.. it does get quite heavy carrying this burden myself at times..so your responses are what I needed. For that I thank you both.

    Have a wonderful day.. don't know where you are but today the weather where I am is remarkable and I'm going to sit outside for a bit and watch my son tinker on a moped..

  • Leigh68
    Leigh68 Member Posts: 38
    edited March 2020

    Phoenix - thank you for this positive story! It's good to hear that you are living a near normal life.

    You were smart not telling anyone about your diagnosis. I regret doing so - especially at my workplace. I only confided in the 4 colleagues on my team - but I know the word has spread. It makes me feel uncomfortable and I wish no one knew.

    Wishing you another 52+ months!


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2020

    Thank you Phoenix. Your words will help others, whether to find their inner peace with Yoga, or keeping cancer private or finding priorities that make sense.

    Disney? Lordy. Challenging for just a "normal" person.

    S

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited March 2020

    Wow Phoenix...inspiring. And real...you're painting a possible picture for us.

    I was also diagnosed at 42 primary, back to work after 10 months and then again at 54 metastatic. Although I made the decision to tell people and am about to retire at 55 I did keep working FT in a full on job until last August. CBT oil is not legal here for cancer patients....yet....so I carry on with minimal meds and keep as active as possible. I also feel about 70 especially in the mornings!

    Just spent 3 days away walking.... fair amount of pain from tendonitis, but treating with RICE, physiotaping the sore bits and brufen which all works...managed 24 miles over hills and rough terrain. Not bad for a stage 4 patient!

    Oh and yoga is a proper revelation as is reiki ( for relaxation, not so much the existential stuff for me...but you never know so discount nothing).

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited March 2020

    Phoenix, our stories are kind of similar in a way. My original dx (2014) was Her2+. I did Herceptin (along with the rest of the shorter term torture) for a year and when the mets popped up (2016), they were Her2-. So I got to do Ibrance. I'm about 6 months behind you with 46 cycles. I also take cycles off here and there. My old Ibrance friends might find this interesting. I saw my therapist yesterday (needed Ativan rx, again a similarity) and she said my "attitude" was helping me to do so well. She has other stage IV clients who seem to obsess over every little thing and are also in denial about a lot and they don't do so well. One recently died. My therapist asked me to call her when she was first dx because she was so distraught. I asked her what stage she was and she claimed she didn't know. She knew but couldn't admit it. She went downhill very quickly. I asked my therapist what she meant by my "attitude." (Do I have an attitude?) She said realism, practicality and calm. So, according to my therapist, any of those you might pick up could help you. I see my attitude more as "screw it" but that might not help so much. Maybe they are the same.

  • Anewbreath
    Anewbreath Member Posts: 122
    edited March 2020

    Thank you ladies for the tips on surviving this disease. I take multiple vitamin and biotin for my thinning hair but, may add vitamin D to that. My tumor characteristic have stayed the same ER+Her2- since diagnosis at this point. But crazy that I was diagnosed Out of the blue stage 2b at 34 in February of “08”and restaged in “18” at 44 after an emergency room visit for possible Gallstones..... 3 kiddos between 24 and16. So, like you ladies I have lots of living yet to do. Liver tumors are scary has heck and to hear you say that this can work for a long time with organ mets is extremely hopeful and gives us time for new treatment options to become available. i need to hear about hope and the possibly of using ibrance longer. I have not shared my diagnosis with people outside my family and they also don’t always get it. My sister recently asked me why my hair was getting so thin?? she was wondering if I wasn’t sharing everything....I get it she doesn’t want to see me sick.......but!!!!! By the way, I have a heck of a lot more hair then after chemo 2 years ago. Thank you So much ladies!

  • phoenixawj
    phoenixawj Member Posts: 4
    edited March 2020

    Wow.. WE do have very similar stories..anewbreath and Jaycee49..crazy when there are soooo many different possibilities..yet we can find a common thread.

    I was distraught when I was rediagnosed with mets.. of course I went straight to google when my Onc told me not too.. I kept a journal then.. and was pleading ..don't let it be only 36 months!! The 1st Dx my boys were 3, 5 and 8...I was so grateful to get 7 plus years.. so the mets DX they were 10,12 and 15..They still needed me.. how can this happen? Its cruel..It crippled me for a few weeks.. Then started therapy..a few weeks later i saw progress with falling TM.. and my attitude changed.. i searched endlessly for longevity stories..There had to be someone out there.. I found a few stories..and it renewed my hope.

    A yoga teacher has said many times in class a mantra that I repeat.. sometimes 50x per day, sometimes 1-2x a week.. "I AM AWARE OF THIS EMOTION (INSERT, STRESS, FEAR,SADNESS, ANGER, THOUGHTS OF DEATH.ETC..) AND I AM RELEASING IT BECAUSE IT SERVES ME NO PURPOSE". I have zero room for toxic thoughts, or people in my life. In some ways this cancer diagnosis has given me perspective...I now have an accelerated expiration date (lol) and I am dam well not going to dwell on drama or what ifs. I firmly believe in a positive attitude and the power of positive thinking and my Onc has said the same thing to me.. that the attitude has alot to do with how you mange this situation.

    Its hard when people around you don't "get it". Some people just don't know how they should act, some can't seem to "go there" when a terminal illness is involved. My first time around people new my diagnosis, i was new in town, newish to the schools.. and can count on one hand the people who came forward or reached out. I was basically ignored at birthday parties, whispered about when i walked into a room or the school. it was AWFUL!!! That is one of the reasons I have chosen to keep my situation private. There are other reasons...but that is a whole other story..

    So my pharmacy just called and my cycle #53 is coming Monday!! Here's to the Ibrance Dance...

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited March 2020

    Great to hear from you Jaycee and also Phoenix..

    I’m not sure if I’m in denial or I have a massive ego or both. But I’m in the ‘screw it’ camp with Jaycee. I do have to compromise and protect myself & friends : family ( at least those who deserve the effort). But most of the time I spend my energy on living!

  • phoenixawj
    phoenixawj Member Posts: 4
    edited March 2020

    Karenfizedbo15, ..That is ALOT of walking.. GOOD FOR YOU!

    I enjoy reiki..for the release of thoughts..and to just be still for an hour.

    Leigh68..Im sorry about the coworker situation..it just sucks.. simple as that..people don't know how to act.. and they are afraid..and if Im being completely honest.. before I was diagnosed.. I probably did the same thing..NOW that is a tough pill to swallow..

    When we know better, we do better

    All we can do it fight the fight and play the hand we are dealt.. hopefully we can throw in a cocktail or two and have some wonderful laughs.

    Sandibeach..THank you.. for starting this thread..it was you correct?

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2020

    Oh, hi there, Phoenix. Yes, I started this thread hoping to find long time Ibrance users, especially those with visceral mets.

    I selfishly needed to know they were out there and how they were surviving.

    I am still hanging in with I/L. My last liver MRI showed some questionable changes but couldn't confirm with ultrasound or PETCT scan.

    My last cycle was cut short as a cold delayed the increase of neutrophils. I am on month 39.

    So I continue on until my next MRI in April.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited April 2020

    Hi Ibrance friends.

    My long run with Ibrance and letrozole is over..suspecting the old ESR1 mutation.

    But I got a long run on this drug, especially with liver mets. I took this combo for 39 months and it really wasn"t bad. Some days I totally forgot I had cancer.

    So onward to Xeloda, hoping for stability, then transfer to Fulvestrant and Verzenio. That is the plan now..as we all know, can change.

    I hope folks will continue to post their months or cycle#s. It really does help the new Ibrance users.

    S

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited April 2020

    Wishing you well Sandi..

  • tinkerbell107
    tinkerbell107 Member Posts: 289
    edited May 2020

    Congratulations to all who made 24+ cycles. My question is how many of you have the Pik3ca mutation? I read on article on Endocrine resistance which has me concerned starting cycle 9 of I/L, I find I/L tolerable so hoping to hear stories of longevity with the Pik3ca mutation Thanks in advance.