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De Novo Stage IV

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  • bsandra
    bsandra Member Posts: 981

    Dear Jobbibo, in your situation I really would consider a surgery to the primary site, as your response is very good, and most probably next scans will be even better. Hugs,

    Saulius

  • jobbibo
    jobbibo Member Posts: 64

    Update on my visit with my oncologist yesterday. CT and bone scan overall looked pretty good. Most importantly no new spots! A lot of my bone spots are turning sclerotic a couple still say lytic but not growing. All my liver spots are shrinking, but it still says I have multiple spots. My biggest one didn’t shrink as much as I’d hoped. Started at 8.5cm x 7.5cm then in August went to 5.1cm x 4.3cm and now at 4.9cm x 2.2cm. My oncologist said she could do a PET scan to see how much of that is actually active but she didn’t order one. I’ll be getting scans every 6 weeks on this trial supposedly and I think she wants to see what it looks like at next scan. I’m officially done with Taxol. Continuing on with HP, going to try to switch from Lupron to Zoladex since my insurance has been denying Lupron and I’m tired of paying out of pocket for that every month. I have a prescription in for Letrozole so will likely start that today or tomorrow. Then next week I start the trial where I’ll either be getting Tucatinib or a placebo.

    I brought up surgery and told her I’d feel most comfortable removing the primary tumor. I brought up the fear of mutation and that in general I just don’t like that I can feel it. She’s not against me having it but wants to wait a bit. She said she usually likes to wait at least a year to really ensure her patients are in a good / stable place to have it. Regarding mutations she said it could also happen with my existing liver lesions, I was a tad disappointed there was still a lot going on in the liver. Anyways, I did confirm I can have the surgery while on the trial so I’m not in a rush to get it in that sense. Hoping in about 6 months we’ll be able to readdress surgery again at the one year mark and if she pushes back at that time I’ll look for second opinions. I’m still glad she hasn’t taken it off the table though.

  • olma61
    olma61 Member Posts: 1,016

    Glad you’re progressing well and had the talk with the MO and she’s open to surgery.

    Let me also add, if I remember correctly, the studies that have shown survival benefit to breast surgery in MBC, the most benefit was found in those of us who are HER2 positive. So there’s another point in favor.

  • denny123
    denny123 Member Posts: 1,435

    @jobbibo That sounds very good! Good luck!

    Denise

  • jobbibo
    jobbibo Member Posts: 64

    Officially started the HER2CLIMB-05 trial today! I took my first two pills at the cancer center and will continue to take 2 pills twice a day. It’s either Tucatinib or a placebo so I’m kind of hoping to have some side effects to indicate I’m actually getting the drug, weird thing to wish for haha. I’ll be getting CT scans every 9 weeks and brain MRI’s / bone scans every 6 months. Glad to know they’ll be monitoring me closely but also a tad nervous to “freak out” about scans so often.

    Hope everyone is doing well! ♥️

  • illimae
    illimae Member Posts: 5,517

    Great news Bobbi Jo, I’ll be following this one, I hope you do well on it.

  • kbl
    kbl Member Posts: 2,637

    @jobbibo I’m hoping you have the Ticatinib. Please keep us posted on how you’re doing.

  • harrow
    harrow Member Posts: 38

    Hi everyone, I hope you are all doing ok!

    @ninetwelve You are in my thoughts. I, too, wish you pain-free, peaceful days.

    @jodyj I wish you good luck on your new treatment! I am also just about to complete my 6 cycles of taxol; however, I am on docetaxel instead. I’ve been tolerating the treatments quite well. I lost most of the hair on my head but it’s already starting to grow back even though I’m not finished my treatments. I still have most of my eyelashes and eyebrows. I take meds proactively for nausea so I haven’t had any of that, nor bone/muscle pain. No neuropathy either for me. Probably the worst side effect for me is losing my sense of taste for about 7-10 days. I also get an injection 24-72 hours post-treatment to bring my neutrophils back up. I feel like it is almost worse for me than the docetaxel. I get flu-like symptoms after the injection but it’s hard to differentiate what side effect is from which drug.

    @jobbibo Great news that there are no new spots and that you’re seeing things get smaller on your treatment! I hope the shrinkage continues! I am also happy to hear that your doctor is open to surgery. I am with others on here, I would (and will myself) push for surgery. I am sending you positive thoughts about receiving the Tucatinib! Please let us know how you’re doing. I might not be far behind you.

  • jodyj
    jodyj Member Posts: 51

    Thanks, @harrow! I've been focused on the possible peripheral neuropathy and hair loss - haven't given much thought to the other side effects. Altered taste, neutropenia, etc. My first Taxol treatment is Monday. Am trying to chill out about it. 🤪

  • snow-drop
    snow-drop Member Posts: 517

    my recent CAT-scan results are not satisfying and I am a lot worried. all 3 liver mets are larger than the prior scan about few mm each. and the bad part is 2 new solid lesions are showing in another part of the liver, around 6 mm. the primary tumor is now doubled and causing a lot of pain. the bon scan will be next week and then MO visit to see what is next. I am too worried and can't stop crying.

    I don't understand why Elacestrant is not effective against this progression. could it be that the ESR1 mutation is uncontrollable? I don't know what the next line would be and how long I can stay on it. I have been on this medicine for only 12 weeks, with these new lesions showing up watch and wait won't be an option?

  • kbl
    kbl Member Posts: 2,637

    @snow-drop Oh, no, I was just thinking of you today and was going to ask you how it’s going. I’m so sorry it hasn’t worked for you. I am seeing this drug not work for a lot of women. There is a group on Facebook. I don’t know why it works for some and not others.

    Would Xeloda be an option for you? I don’t see that on your signature. Also, are you Her2 low? Enhurtu would then be an option.

    Can I ask if you do tumor markers, and if so, what did they do when you tested? I see that they can go way up at first, and mine went down, so now I’m not sure if that’s good or bad. I was on doxycycline when they were tested this time, so I’ve read that can make them go down.

    I’m also really sorry you’re having pain. I’m sending you a big hug.

    Please keep me posted on what’s next for you.

  • snow-drop
    snow-drop Member Posts: 517

    Thanks Kris for your kind words. I am Her2 +1 which is considered low. as for TM, I had tested CA27-29 in the previous clinic. but new MO wasn't interested in testing TM. I convinced him to run the test and they did CA15-3 which was high. I didn't have any previous information to compare. last month I insisted they test CA27-29 and the result was triple the previous level before progression. this makes sense ref to the recent progression.

    I think it is a good sign that your TM's dropping down. I will definitely let you know about the MO's decision. sorry I've been less active recently. I should update my signature….

  • kbl
    kbl Member Posts: 2,637

    @snow-drop I absolutely hate when doctors don’t trust that tumor markers work for some. I’m glad you got them to run them. I am thinking of you as you go through this. I just finished bottle #2 a few days ago. I am having some worsening GERD. I’m going to get some Prilosec tomorrow. I am hoping whatever is next for you knocks it back again.

    Kris

  • moderators
    moderators Posts: 7,681

    @snow-drop, we're sorry to hear that. Please, keep us posted on your MO's decision. We're sending you hugs and positive thoughts.

    The Mods

  • jobbibo
    jobbibo Member Posts: 64

    @snow-drop I’m so sorry to hear this. I can imagine how frustrating it is to see something not working so soon. I hope your oncologist has a good plan in place. I’ll be thinking of you and hoping whatever line is next that it works wonders for you!

  • denny123
    denny123 Member Posts: 1,435

    @snow-drop

    I am sorry to read this. In 2004, my liver was filled with very aggressive tumors. I went on a "then" clinical trial of Gemzar and Herceptin which cleared out my liver in 9 months. I also had a liver resection of the largest 13 cm tumor. My liver has remained clear since then.

    There are a lot of treatments that work very well on the liver, and I sure hope that you can find one soon.

    My CA 27-29 markers are not accurate at all, so they are no longer tested. Back then I was ER+, PR-, Her2+++.

  • denny123
    denny123 Member Posts: 1,435

    @kbl …

    Be sure to ask your onc and pharmacist about Prilosec. I was prescribed it, but was told absolutely not since I am on Herceptin and Xeloda. Instead, I can take Famotidine, which is Pepcid40.

  • kbl
    kbl Member Posts: 2,637

    @denny123 Thank you. When I was on Xeloda, Prilosec was a definite no-no. It’s okay to take it with Orserdu. I have been taking Pepcid, but it’s not working very well. I even took it morning and night for a few nights.

  • harrow
    harrow Member Posts: 38
    edited December 2023

    @snow-drop I’m sorry to hear your new treatment doesn’t seem to be working as expected. I don’t have experience or knowledge about HR+ treatments, as I’m only HER2+, but you are in my thoughts. I understand your worries and fears. I hope your MO will be able to advise of next steps very soon. Please let us know how it goes.

    @kbl Sorry you’re experiencing worsening GERD. Hopefully you can find something that will help.

    @jodyj I hope your first taxol treatment went ok today. Please let us know how you’re doing.

    @jobbibo How are you doing on the Tucatinib? Do you think you’re experiencing any additional side effects that might indicate you are receiving the drug?

    I met with the surgeon and they’re not on-board with surgery. They said that it will not benefit me, particularly survival-wise (which I know there is conflicting data on this topic). The most recent mammogram/ultrasound report said there is a large field of microcalcification consistent with tumor necrosis, which would mean a mastectomy to get clear margins and they don’t think it’s worth the risk. I’ve asked for a referral for a second opinion but I’m sure I’ll get the same response. I am disappointed. Does anyone know or have any experience with tumour necrosis? The size of the area they mention is larger than the IDC and DCIS tumours put together so I’m not sure how it even got so big. The surgeon seems to think the cancer was bigger than originally thought, but that doesn’t make sense to me since multiple scans reported similar sizes of each tumour.

    I hope everyone is doing ok!

  • denny123
    denny123 Member Posts: 1,435

    @harrow I had tumor necrosis in my liver for a few years, until it finally disappeared. My liver was filled with tumors in 2004, but a resection and Gemzar with Herceptin got rid of the tumors, leaving just the one necrotic spot.

  • jobbibo
    jobbibo Member Posts: 64

    @harrow I don’t have any major side effects so it’s hard to tell! One major side effect is diarrhea and I already had it once in a while from the Phesgo and that hasn’t become any better or worse since starting. They also told me a lot of times they see liver enzymes creeping up on this drug and mine has only gone lower since. One thing though 4 separate times I had some weird pounding sensation in my ear I didn’t really think much of it’d only last like 5 seconds. A couple days after it happened a few times I was going through the full list of Tucatinib side effects and saw ear pounding was one of them. I didn’t even know that at the time so I know it wasn’t just “in my head” trying to make myself have certain side effects haha but that’s the only indication I might be on it.

    I’m sorry to hear they’re not on board with surgery. I was bummed when my oncologist wasn’t on board “at least yet” and when I brought up me seeing conflicting studies she said the most recent biggest studies are what show no survival benefit. I’m glad she’ll be open to it in the future if I continue to do well but still sucks to hear no right now. Hopefully a second opinion will go better there! I don’t have any insights to necrosis but would be interested to hear others input on that. They haven’t done any sort of ultrasound / mammogram / breast MRI since I started treatment and I find that odd. I know they’re more concerned with mets and everything but I’d like to know what’s going on with the primary tumor so I might bring up looking at it somehow.

  • kbl
    kbl Member Posts: 2,637

    @harrow Thank you. I’ve started Prilosec in the morning and Pepcid at night. It was a rough day today. Sometimes I wish I would just throw up to feel better.

    I’m sorry your surgeons aren’t onboard. I don’t have any knowledge about necrosis, so I can’t say anything about that.

  • jodyj
    jodyj Member Posts: 51
    edited December 2023

    My heart goes out to everyone who is struggling right now. I'm doing a bit better, I think.

    @harrow, thanks for thinking of me. I got my second weekly Taxol chemo yesterday, and it felt great to know what to expect. The nurse at the first chemo appt really nailed how things would go for me: Days 1 and 2 are good, 3 and 4 the worst, then beginning of recovery on Day 5. I know the side effects are cumulative, but I think I can do this treatment. And 3 of my 4 extremely high tumour markers came down quite a bit. Still high. I've only seen this on the portal, not yet discussed with onc. Hoping it's because of this treatment, even though it's early.

    @kbl, I am sorry you have been feeling crummy in that way. Sending healing vibes to you, my friend.

    Best wishes to all. (Don't know why I can't delete the kbl link below!)

    @kbl

  • kbl
    kbl Member Posts: 2,637

    @jodyj Thank you so much.

    I am trying to balance this stupid thing. I’m having a hard time just because when I know something isn’t right and go to, say, the emergency room and they say there’s nothing wrong, it makes me hesitate to go anymore. I’m gun shy. No one understands what it’s like. The lobular not being seen on things and missed for six years has literally made me so gun shy. I will keep an eye. There is heart disease in my family, and wouldn’t you know acid reflux can feel like heart pain. I’m trying to balance how I feel with not waiting too long if it’s something I need to be seen for. I’m taking my SPO2 and blood pressure, and both of them are fine. I’m trying to wait for the Prilosec to kick in too. if there is something going on, I need my body to cooperate this one time and give me a sign.

  • jodyj
    jodyj Member Posts: 51

    Wonderful news, @denny123!! Thanks for sharing it here! 😊

  • divinemrsm
    divinemrsm Member Posts: 5,896
    edited December 2023

    denny123, wow, 22 years! I’m so happy for you. Glad to hear of your good scans, too. You are such an inspiration. Sometimes when I get down, I think of your story living so long with this disease and it renews my hope.

  • kbl
    kbl Member Posts: 2,637

    @denny123 Thats amazing, and I’m glad the one spot cleared up for you. You give so much hope.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,642

    Denny,

    Wow! I just hit the 12 year mark and am impressed that you’ve got me beat by a decade. Congratulations and have a wonderful holiday season 😊

  • harrow
    harrow Member Posts: 38

    @denny123 thank you for sharing! Your story gives me so much hope about what could be possible. I’m happy to hear your CT scan was good news. I’ll keep my fingers crossed that the heart spot is also nothing! Also, thanks for sharing your experience about the necrosis. I wasn’t aware it could go away. No one, except the surgeon, has said anything to me about it

    @jobbibo I’m glad to hear you’re doing ok! I hope that continues for you.

    @jodyj good to hear things are going alright for you. I agree with you about knowing what to expect and when. It almost makes things feel more doable. I didn’t really notice the cumulative effects until really this last treatment and maybe a bit of the one before. Fatigue and no taste has been longer lasting this time for me, so I am thankful I am done docetaxel, at least for now. I wish you minimal side effects and send you positive vibes for your remaining treatments.

    @exbrnxgrl congratulations on your 12 years! Your story gives me hope as well.

    @kbl I completely understand how you feel gun shy. I’m sure I would in your shoes as well. It’s like who/what can you trust? You can’t trust your body. You can’t trust test results. Doctors don’t believe what they can’t see. I’m sorry. That must be so frustrating and disheartening for you. I hope things start to feel better for you soon. Thinking of you.