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Comments

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited November 2020

    JFL- Thanks so much for the update. Hadn't seen you post in awhile. I am in awe of your perseverance, strength, and optimism that WILL get you through this. Keeping you in my prayers.

    Dee - Good luck with scans - will be there in your pocket!! Happy you are able to celebrate Thanksgiving with your family. Very special. Can feel the love.

    Nicole - Unless there is a proven connection, try not to jump to the conclusion that the skin "bites" are directly related to your cancer and progression. There is so much complexity in the immune system and stress - emotional, physical, psychological - can show up in many ways. It's tough not to be scared, but worrying only increases your stress and negatively impacts immunity. Take care of yourself, be kind to yourself and take one day at a time.

    Grannax - Enjoy your family and the early holidays.

  • JFL
    JFL Member Posts: 1,373
    edited December 2020

    Thanks for everyone’s kind and supportive words. It means so much that I am in some of your thoughts and prayers.

    Grannax, Enhertu has shown good preliminary results for HER2-low BC, meaning not HER2 positive (+3) but HER2+1 or +2. I am +2. It is a combo of an HER2 antibody that attacks the cancer cells plus a topimerase chemo. The delivery method/mechanism of action does collateral damage to surrounding cancer cells even if they don’t all express HER2 receptors. I am paying out of pocket as insurance has denied initial request and two appeals but I plan to submit a third, final appeal appeal after I have my first scan, assuming it looks good.

    I have not scanned yet - would like to wait full 3 months so long as liver panels and tumor markers keep dropping. My MO wanted me to scan after 6 weeks or so but I said no. I have regretted early scans in the past and never knew whether a treatment failed or I didn’t give it enough time. Median TTR (time to response) in the HER2 low trials has been 2.7 months, I believe. Also, I have zero confidence the few mediocre treatment options I have left will be strong enough to get me out of this crisis so felt Enhertu is my last best chance until my situation improves to a more normalized state. I am not itching to jump to another treatment that will not likely work. Last month, I was completely jaundiced with super yellow eyes, high bilirubin, no appetite, super tired and my alkaline phosphatase kept climbing as well as everything else. The fact that the jaundice went away, I have a strong appetite, more energy and bilirubin is normal are great indicators Enhertu is working on my liver mets, along with alkaline phosphatase, tumor markers and other liver enzymes dropping. God willing

  • bsandra
    bsandra Member Posts: 1,037
    edited December 2020

    Dear JFL, we are with you. Might be that Enhertu is a wonder-drug for you, let's just hope side-effects are manageable.

    Dear Nicole, I am not a doctor but immune system is much more complex than WBC counts. Even your WBC are now in cycles when you are on chemo (aren't they?), and big stress or tiredness can cause you to get all sorts of infections. Even when you are ill it is very unusual that WBCs are bad, in fact in many cases illness causes production of more WBCs. My wife also gets these "bites", one usually on her leg, another near her lips. Her WBC are more or less fine too, and dermatologist said it has nothing to do with cancer, just the immune system reactions. She uses prescribed Fucidin and it really helps, and then they disappear, and then sometimes appear again. I just don't want you to see it as an indicator for your disease progression/regression. I think your recent results are very good and your body while healing can react in many different ways.

    Saulius

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

    Saulius, how is your wife doing?

  • BevJen
    BevJen Member Posts: 2,341
    edited December 2020

    JFL,

    I am so happy that this latest treatment is starting to turn things around for you with respect to your liver. It sounds like it is making quite an impact. That's good news for you and for us.

    I am shocked about the repeated insurance denials. WTH? I hope that your next appeal is successful.

    Thinking good thoughts for you for continued success on Enhertu.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2020

    Saulius..thank you for your info :). These are not 1 "bite" here or another there...they come in patches clusters and last for weeks on either my elbows, knees ankles they can present like Dermatitis Heptoformis (gluten sensitivity) so if you google images of that...that is what it is like... and they itch worse than poison ivy ...

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

    JFL, has compassionate use been explored for Enhertu?

    My MO said it was only FDA approved for HER2+ with 2 failed HER2+ treatments. So I see why you have to out of pocket pay.

    The DESTINY trial "04" is Phase 3 -so drug is randomized for IHC 1+, 2+ Her2. I am watching it as I was IHC 1+ for HER2 in 2016. The latest liver bx the HER2 IHC was 0. Hmm.

  • JFL
    JFL Member Posts: 1,373
    edited December 2020

    Sandi, you are right about Enhertu only being approved right now for HER2 positive after two failed prior treatments. My MO mentioned that even if (hypothetically) a biopsy suddenly tested HER2 positive for me, the drug would not be approved by insurance until I took Herceptin and a second line HER2 therapy before taking Enhertu. I did explore compassionate use - drug company not doing it at all now for Enhertu because so many trials are underway. DESTINY has at least 6 arms now, maybe more. The drug company also has a program for persons without insurance and in financial need for which I am not eligible

    I suspect that Enhertu may not need as high of a dose as given. My dose was reduced once after first treatment due to liver reaction and MAJOR flare of all liver enzymes, alkaline phosphatase, bilirubin and tumor markers. I think it was due to massive tumor die off but a lot for my compromised body to handle. In the preliminary fast track approval of Enhertu for HER2, the FDA commented that there is not sufficient data to determine whether the treatment would be effective at two certain lower doses due to lack of patient enrollment in those subarms. There are various trials testing Enhertu at lower doses. I am in an Enhertu Facebook group and some people have had really amazing, long term results.

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

    JFL..you are providing us good info. Thank you for giving us some of your time and energy. I am taking notes.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited December 2020

    JFL, Thank you for taking the time to provide us with your updates. I have missed seeing you here. It sounds like you have had a rough time. It is amazing that you are able to keep your determined spirit. I hope that Enhertu continues to provide good results and that the ascites clears up. As SandiBeach said, you have given us valuable information as well as letting us know how you are doing.

    Hugs and prayers from, lynn

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited December 2020

    JFL

    So happy for your success on Enhertu. Please keep us informed about the scans when you get them.

    I am sorry you have to pay out of pocket. Can you wait for the third appeal to get your scans and prove it is working? Seems like it would be cheaper for the insurance company to keep you on something that is working!

    I understand paying out of pocket. One of the Neuroendocrine trials I am considering is not sponsored by big pharm but by the physician. I would have to pay $12,000/ infusion up front then send it to insurance to see if they would cover it. The trial is 4-6 infusions. My DH said he would gladly find a way to pay for it if/when that is the right step.

    Dee

  • d37
    d37 Member Posts: 73
    edited December 2020

    JFL, I’m sorry that you have been going through so much. I hope things get better for you.

    Lynn, I have not been back to Dana Farber. My treatments are going well thanks. I actually have my treatments in Manchester. I just moved from New Boston in May. I’m pretty close to where you live.

    I need a little advise. I have been having Taxol treatments since August 11th, three weeks on, one week off. My tumor markers have been decreasing by one half since that time and they are now at 130 from 1857 at diagnosis My MO told me that he will take me off of Taxol if my tumor markers are not continuing to go down at the same rate. He said that would be an indication that it is no longer working. He said that I would then continue on Herceptin and Pergeta. I have had minimal side effects from Taxol. When I first started he said that I would be on it for at least six months if I tolerated it well. Thoughts? Thanks!

    Denise

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited December 2020

    Denise, I live in Bedford, so we were practically neighbors before you moved. I also have treatment in Manchester. I am not Her2-positive, so I am not qualified to answer your question about Taxol. It does seem odd to me that your MO would rely solely on TM to determine when to stop Taxol. Does he plan to order scans, too? Your TM response has been impressive up till now. I do know that Her2-positive patients usually see good responses to H&P. Perhaps your MO has that in mind and wants to be as aggressive as possible. I would ask him lots of questions.

    Lynne


  • d37
    d37 Member Posts: 73
    edited December 2020

    Hi Lynne,

    Small world! I always get my treatments on Mondays or Tuesdays. My MO did not order scans. I am definitely going to ask him why. Thanks for the feedback. I hope your treatment is going well.


    Denise

  • clovan
    clovan Member Posts: 2
    edited December 2020

    Hi, I just had to chime in about the bites. I had something similar last month.

    I have liver mets and am in my 3rd month of Ibrance and Femera. Well after the first cycle, I had just started my 7 days off Ibrance. My hands erupted like poison ivy top and bottom.

    I already take allegra D, adding a claritin helped. Topicals helped a tiny bit (lidocaine, caladryl, cortisol) but not really.

    Then my ankles and knees erupted. I used simple witch hazel a couple of times and all the itch subsided in a day, and disappeared within two.

    I felt like this was a drug reaction, but now I am doing fine so maybe that was not why. More likely, my suppressed immune system at the end of the cycle made my nervous system sensitive. The outbreaks were symmetrical.

    side note, my doctor thinks I am one of the odd birds who have paraneoplastic syndrome from my cancer, and it affects my nervous system.

    Try witchhazel if it happens again. It is the drugstore near face astringent. lidocaine and other drugs are dangerous to pets if it gets on their fur from your hands, clothes upholstery and they lick it.

    sorry I cant say what your outbreak means, but at least maybe you can avoid the torture of itching


  • bsandra
    bsandra Member Posts: 1,037
    edited December 2020

    Dear Nicole, for my wife it is more as dermatitis but I am sure it is drug/immune system related. Do you have any scientific data these skin conditions could indicate cancer progression, BC in particular?

    Dear Sandibeach57, thank you for asking. I am even afraid to tell (sort of not to ruin everything) that she is NED for past 15 months, and feeling absolutely healthy. Thoughts of this being over with any up-coming scans drive me crazy and my heart drops to my heels every time I have a thought about that:/ She's from the start, i.e. almost for 40 months on the same combo, I just pray this goes on...

    Saulius

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2020

    image

    Saulius.....let me explain. Before I was even diagnosed with Stage 4 Breast Cancer (but was already have a lot of pain in sacrum, so I HAD Stage 4 just didn't know it yet).... I began getting these itchy "bite- like" things. This went on for over a year and half!!!! They were all over my elbows and knees...I thought I had bedbugs or scabies...but I went to 6 dermatologists over a year and half period they took over 6 skin samples for biopsy. They knew it wasn't scabies or bedbugs because not only was my husband was unaffected but they checked for it 6 times and treated me for it (at my insistance!! 3 times) . None of the tests showed what it could be. They tried treating with Hydroxzine, (much stronger than Claritan or any OTC antihistamine) and TONS and TONS of topical creams to include (like I mentioned earlier steroid creams) NOTHING STOPPED the itch. They orginally thought it was dermatitis heptoformis because of where the bites were but I was tested for that too and I went gluten free (which is the cure) and NOTHING worked and that test was negative as well. After I finally got diagnosed Stage 4 about a month later while in NY getting my first line of treatment for Stage 4 I went to yet another dermatologist...he took one look at me and turned to my husband and I and said this:

    Usually when a patient comes to me and presents the way you are presenting I usually send them for a full body scan because it usually means they have cancer SOMEWHERE in their body. We already know you do, the "bites" are your bodies reacting to the cancer...and that is why nothing is working on them...if the cancer gets killed or supressed enough you may get relief.

    SURE ENOUGH...Ibrance works for the first 3 momths (2 weeks after that appt with him) and all the bites go completely away!!!!!! I get scanned at 3 months everything has shrunk and at that point I only had 2 bone mets and 3 TINY TINY tumors in liver. 1 month later month 4 all of a sudden my elbows start with a few bites...I call the MO and say I think the ibrance stopped working my "bites" are back...they scan and sure enough EVERYTHING GREW back!!!! I go on Xeloda and Doxil my bites get out of control...Elbows knees and ankels...BAD so bad that I am going to attach a pic here so you can see. I failed both those treatments and the bites just happen to be out of control neither of those ever worked for me...they didn't work ...then stop they never worked and then I scan and find out I have new tumors...so the cancer was growing and so were the "bites". Then I start my current treatment Halaven, and within 3 week all my bites go away GONE!!!! NOT 1!!!!! So this is why when I got just 1 the other night on my elbow I thought there could be a possiblity that the treatment might be stopping.

    Let me be clear...I can see maybe stress making them worse...but when I got them the first year and half...I didn't even know I had Stage 4. and they only 2 times they have gone away is when a treatment worked. So for me, they are almost like my "tumor markers"....

    I was cold in the pic so I have "goose bumps" ... lol ** Also the way you see it on the elbow is also on the other elbow and knees at that time (i just didn't take pic) when Xeloda and Doxil werent working they also went to my ankles sooo bad I have scars so bad from scratching.. :(. the itch is HORRIBLE I cannot even explain the depth of the itch.

  • helenlouise
    helenlouise Member Posts: 363
    edited December 2020

    Cloven, I note you mention paraneoplastic syndrome. Do you have specific symptoms? I have developed a muscle twitch ( fasciculations ) which I believe can be part of the syndrome ( acquired neuromyotonia). Scary stuff when you body is reacting to the cancer but causing more issues. I am yet to be diagnosed and currently have a low tuner burden so maybe not it at all. Good luck with your treatment.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited December 2020

    I did get my correct report from Tempus. Not good news. No new mutations, alterations or actionable TX. I'm kinda sad about that, of course.


    There is a phase 1 trial, first in human at my cancer center. I would qualify in general but not because of a specific mutation. It's First in human study of Oral TP-0184 in patients with with advanced solid tumors (NCT03429218)


    The drug does not have a name yet and I'm not techy enough to quite understand some of what I've read. If anyone knows anything about this trial please share.

    It's a novel XPO1 inhibitor. I have no idea what that means. Does anyone know?💞

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2020

    Grannax why are you looking at trials didn't you just start Halaven???

  • BevJen
    BevJen Member Posts: 2,341
    edited December 2020

    public service announcement -- cross posted with Ibrance:

    Living Beyond Breast Cancer has a webinar post SABCS regarding "new treatments for metastatic breast cancer." You must register in advance:

    https://www.lbbc.org/programs-events/ask-expert-ne...


  • candy-678
    candy-678 Member Posts: 4,177
    edited December 2020

    BevJen- Thanks. Registered.

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited December 2020

    Unfortunately, the drug did not work so I am off the CDK 2/4/6 trial. 😔 There was a 1.5 cm size increase in the non y-90 treated Liver tumor(index tumor) and slight growth in the diffuse ones. Not going to panic but need to change treatment.

    FYI- the Y-90 treated tumors are stable. The lung lesion shrunk(SBRT) the left liver lobe tumor shrank (bland embolization)

    Dr. Hamilton at SCRI is suggesting we look at the "anti-estrogen" trials again because I'm 100% ER+. I'm also in a good place physically to go on another trial. Checking to see if a trial is open now that I can qualify for. I should know in about a week. So I am in a washout period for now

    I have an appointment with my local MO on Friday to get his thoughts. Also checking back in at MDACC.

    One interesting thing Dr Hamilton said is that she hopes I get a targeted trial because I can push chemo down the road, especially during covid. 🤔

    I'm not upset, but I really wanted a win this time. Moving on to line 6 whatever that will be. 🙏🏻

    Dee

  • BevJen
    BevJen Member Posts: 2,341
    edited December 2020

    Oh, Dee, I am so sorry that this trial didn't work out, especially after all of your hard work to even get into it. I hope that you are able to find another good trial to get into to help you out.

    Good luck consulting with your local MO and with MDA. Thinking good thoughts for you.

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited December 2020

    Dee - Reslly sorry the drug did not work for you. Good to.hear mosteverything else is stable right now and you are feeling good to participatein a trial. Hope they find a good trial for you to keep chemo at bay for awhile. Prayers!!!

  • bsandra
    bsandra Member Posts: 1,037
    edited December 2020

    Dear Dee, uhh, I am sorry you got these news:/ So crazy a new drug fails so quickly:/ It is good that you still have many options...

    My wife has just called me from NCI - they switched her from Herceptin to Herzuma (biosimilar) with Perjeta. I am a bit disappointed, as Herceptin costs just some Euros more but they don't buy it anymore. Dang, I hope side effects are really same as trials and other data state...

    Saulius

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2020

    dee so sorry it didn't work I hope you get into the next trial quickly and it works.

    Saulius yes hoping this new drug has minimal if any side effects.

  • BevJen
    BevJen Member Posts: 2,341
    edited December 2020

    Saulius,

    Here's hoping that the bio similar drug works just as well and has no further side effects. It is absolutely aggravating when these changes are made and are out of our control. Thinking good thoughts for you and your wife.

  • B-A-P
    B-A-P Member Posts: 409
    edited December 2020

    Hi Friends,


    I had been NED for the last two years. However my current report is showing Mets active in my liver. As far as I can read, 4 cm , 3.5 cm. and multiple sub centimetre. I have not seen my Onc. She's on sabbatical and the one taking over can't see me until next weds.

    Can someone give me hope that even with recurrence I can get back to NED, or can give me the downlow on current treatments that work well for liver mets ? I want to be armed and ready for my appointment next week.

    Whatever is going on is aggressive. my scan was clear 4 months ago.

  • BevJen
    BevJen Member Posts: 2,341
    edited December 2020

    B-A-P,

    Sorry to hear this.

    Have you thought at all about local liver treatment? Like y90 or microwave ablation? You would need to consult with an interventional radiologist for these treatments. It's something that I would ask about for sure. Look at the other liver mets thread dealing with these treatments and mentioned often here.

    Good luck.

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