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De Novo Stage IV

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  • jobbibo
    jobbibo Member Posts: 89
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    @snow-drop I love hearing how you advocated for yourself and asked for a liquid biopsy! I’m sorry to hear about mixed results from your scans, I hope the biopsy will be able to help determine next steps. Please keep us posted, I’ll be thinking of you!

    @denny123 Yayyy I’m so happy to hear you’re feeling good and seemed to have found the culprit! I’m sure after 2 years of having these issues that’s such a relief.

  • bsandra
    bsandra Member Posts: 1,019
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    Dear denny123, my gosh, Heparin… who would have thought of that??? Again, I am amazed how the solutin was found here in these forums when all people jumped in together. A-m-a-z-i-n-g! Saulius

  • tougholdcrow
    tougholdcrow Member Posts: 101
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    @sondraf I also had mets called "inflammation." Scans hold too much mystery, and you would think the science would be better at this point.

  • divinemrsm
    divinemrsm Member Posts: 6,207
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    Isn’t that the truth, tougholdcrow? So many technological advancements and yet scanning seems to have plateaued. It works to some degree but there still seems to be too much guess work or “let’s wait and see.”

  • harrow
    harrow Member Posts: 83
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    @jobbibo congratulations on the good scans! It will be nice not to have to worry about that heading into your surgeries. I wish you all the luck and the smoothest recovery!

    @snow-drop I’m glad to hear you’re being so proactive and advocating for yourself! Hopefully the biopsy will provide some answers for you and your team!

    @denny123 hooray! What a relief it must be to finally feel like you have a solution! I hope the issues continue to stay away.

    Thinking of you all.

  • denny123
    denny123 Member Posts: 1,495
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    I had my CD scan today so am checking constantly online to see the results.

    It took some convincing, but the nurse said that I can get my future CBC's at that Quest site without Heparin. Either chest-port, or a vein in my hand. Whatever will be without Heparin.

    Denise

  • harrow
    harrow Member Posts: 83
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    @jobbibo it’s June 27 - surgery day. Sending lots of positive thoughts your way. I hope things go smoothly and you have a quick recovery! Thinking of you. Please let us know how you’re doing.

    @denny123 I hope the CT results showed absolutely nothing! Great news about your future CBCs without Heparin!

    I hope everyone is doing ok!

  • denny123
    denny123 Member Posts: 1,495
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    @harrow Thanks! The impression on the report indicated a significant abnormality. Although it seems like I have a lot of problems (with a lot of words that I still have to look up), my onc said that the indicated possible problem is a new spot on my lung.

    But I have had those before and they have gone away.

    He was very interested in my Heparin problem and is researching that. Could be a new formulation or a change in the supplier, etc.

    Next scan will be in Sept.

    Denise

  • jobbibo
    jobbibo Member Posts: 89
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    Thank you so much @harrow for the well wishes and checking in!

    Both surgeries done woohoo! I was in surgery from 7 am until almost 1 pm, what a long day! I stayed the night and got discharged yesterday afternoon. I still have bandages around my chest but even with that it’s so weird to look at myself in the mirror. I hope I’ll mentally accept my new body sooner than later!

    The pain meds are helping but I do still have quite a bit of pain in certain areas. The scar below my belly button hurts the most surprisingly. I also have a really weird neck pain (I think the tendons?) that then shoots to my shoulder blades / collar bone area, it hurts the most when I’m eating. I’m taking oxycodone, ibuprofen and THC for the pain and those 3 things at the same time help a lot. My surgeon gave me the go ahead to use THC while on the pain killers thankfully. But this combo makes me pretty much pass out so just lots of sleep so far!

    Now I’m just focusing on working through this constipation. I’m used to diarrhea with my meds so this is new for me. I’m taking Miralax and stool softeners but still no movement going on. Going to try some prune juice today hoping that’ll finally get things going! If anyone has any other suggestions I am all ears haha.

    Hope everyone is doing well!

  • jobbibo
    jobbibo Member Posts: 89
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    @denny123 Sorry to hear they see a new spot in the lung. I’m hoping it ends up going away like the others have. I’ll be sending all the good vibes that your next scans look great! I’m glad to hear your onc is looking more into the Heparin issue, hoping they can get to the bottom of that!

  • seeq
    seeq Member Posts: 1,129
    edited June 29
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    @jobbibo - I'm glad to hear things went well. Be kind to yourself, you just had two major surgerie, after all. The weird neck/ shoulder pain could be "referred shoulder pain" from your abdominal surgery. The same thing happened after my C-section and miraculously went away when things started moving again (funny story, but TMI). Don't be afraid to ask for help if you don't get relief soon.

    ETA‐ it was specifically the gas from the surgery - maybe your doc would let you take Gas-X?

  • harrow
    harrow Member Posts: 83
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    @denny123 Good to hear that your doctor is going to research your Heparin issue more. I’m glad they didn’t dismiss the difference it has made for you. I hope the spot on your lung disappears like all the others! Sending positive thoughts your way. I’ll keep my fingers crossed for your September scan.

    @jobbibo thanks for checking in! I’m very happy to hear you’re doing good, with the exception of some pain and the constipation. I hope the pain resolves itself soon. I found that Senekot worked way better for me than Miralax/RestoraLAX. I also took a suppository as well when I was super constipated from my first chemo infusion. I proactively took Senekot before my surgery, so I wasn’t too bad afterwards. I am sending you support as you work through accepting your new body. It didn’t bother me as much as I was expecting it would, which surprised me, but I also only had one done. I wish the same ease of transition for you.

    Thinking of you all.

  • denny123
    denny123 Member Posts: 1,495
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    @jobbibo I am so glad that all went well and I hope that you heal quickly. As a long-time constipation gal who takes Miralax and 250 mg of stool softeners every evening, I have found that a dose of Philips MOM (instead of Miralax and softeners for one night), gets things started. Your pain meds are making you more constipated.

    Thanks Harrow & jobbibo for the heparin notes. My onc listens to me when I have any problems since he knows that I research everything. It took a bit of convincing him that folic acid foods were causing my hand and foot infections, too. But now he is a true believer.

    I always have spots showing up here and there on my scans. We watch them, but seldom take any actions, unless they grow.

    Prayers are needed for July 4th since my daughter is going to get married for the second time and the wedding will be outside, with no tents. And we are supposed to have thunderstorms! Certainly not my kind of wedding. It will be a casual pig-roast at her fiancee's father's farm. Again, not my type….. LOL.

  • kbl
    kbl Member Posts: 2,793
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    Hi, everyone. I’m sorry I haven’t posted in a while. I got to go on vacation with my daughter and then got super busy when I got home.

    @jobbibo I’m so glad your surgeries went well. I’m surprised they didn’t make sure you could go to the bathroom before they released you from the hospital. I hope things start moving again for you. That does seem like a really long time in surgery.

    @denny123 Thinking of you.

  • cyathea
    cyathea Member Posts: 337
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    @denny123 I was happy to hear they figured out the Heparin issue, but also wishing you healing for the lung lesion.

    @jobbibo I hope you are continuing to recover from surgery. I’m also recovering from surgery from a fall. (Broke my tibia, fibula and ankle bones.) Initially, I took Miralax in the morning and a Senna pill in the evening. Now that I’ve reduced the amount of oxy, I’ve stopped the Miralax and am taking the Senna every other day. When I was in the hospital, they didn’t start the stool softeners early enough, so I suffered a bit with constipation. I should have known better after all the surgeries I’ve had!

    @kbl it’s lovely to hear you could go on vacation with your daughter.

  • kbl
    kbl Member Posts: 2,793
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    @cyathea Oh, my goodness, ouch. That sounds very painful. I hope you heal quickly.

    I had the best vacation. Thank you.

  • harrow
    harrow Member Posts: 83
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    @denny123 how did your daughter’s wedding go?

    @kbl I’m so glad you had a wonderful vacation with your daughter!

    @cyathea oh my! Your surgery sounds incredibly painful. Was that all in one leg? I wish you a speedy recovery!

    @jobbibo I hope your recovery is still going well!

  • jobbibo
    jobbibo Member Posts: 89
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    @denny123 I hope the wedding went well! Can’t wait to hear about it.

    @kbl I hope you had a great time on vacation!

    @cyathea ouch I’m so sorry. I hope you’re recovering well, thinking of you!

    Thanks everyone for the well wishes with recovery! It’s all going as good as it can I think! Finally over the constipation hurdle, I think getting my Phesgo shot helped the most with that lol. I’m very ready for the drains to come out, I’m over sleeping on my recliner and only taking sponge baths. I have an appointment Monday hopefully they’re dried up enough by then!

    The pathology came back and everything with my ovaries and fallopian tubes came back clear which is great. Unfortunately there was still 8mm of IDC found in my original breast tumor but my surgeon and oncologist aren’t too concerned there since it started out as an almost 9cm tumor. Some DCIS was found too but we expected that, also got clear margins. Since my Signatera is still at 0 and everything else is looking like scarring / inactive on my scans I’m just continuing with current treatment. Wished for a PCR but at least glad to have gotten it all out!

  • kbl
    kbl Member Posts: 2,793
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    @harrow Thank you.

    @jobbibo That’s awesome news about your ovaries and fallopian tubes. Glad too that you get to stay on your current treatment. I hope your drains come out soon and you get to get back into a comfy bed.

  • denny123
    denny123 Member Posts: 1,495
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    This is my beautiful daughter, grandson, and new husband. I sure hope that this marriage goes better than the first one. The wedding was nice but it was 90 degrees and very humid. It was supposed to storm all day, but it didn't, TG.

  • denny123
    denny123 Member Posts: 1,495
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    @cyathea ouch! I hope that you heal quickly!

    @jobbibo I am so glad that all went well for you 8mm is teeny-tiny and should disappear quickly with treatment.

    @kbl - how nice to be able to go on vacation with your daughter! Where did you go?

  • tougholdcrow
    tougholdcrow Member Posts: 101
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    Congrats, denny123! I hope the sun shines on them always.

  • snow-drop
    snow-drop Member Posts: 526
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    Hello all,

    I came to check in on all of you and saw a lot of good news here! KBL, I am sure you had a wonderful time with your daughter. Denny, congratulations on your daughter's wedding, she is beautiful.

    Jobbibo, I was thinking of you around June 27 and sent you good vibes. I wish you a smooth recovery and can't wait for you to be able to sleep in your own bed again.

    Cyathea, I am sorry about all the difficulties you've been through, I wish you a speedy recovery.

    Harrow, you are so sweet for checking on everyone. ❤️

    Sondra, thanks for all the info, really helpful. I will ask about inflammation marker (hadn't heard of it before). I totally relate to you comment 'they are lazy/busy/ excuses... How are you feeling with the new treatment? do you feel a difference?

    I have my liquid biopsy results back 2 weeks ago, since then I have been more confused/ numb/ angry/ desperate... The ESR1 mutation is now down to 0.3, which I think is too low to continue with Elacestrant alone. The report suggested some clinical trials combining Elacestrant or other SERMs with Verzenio. to be honest, I am up for adding something to Elacestrant. I am not filled with confidence in monotherapy anymore, especially since I feel a lump a little below my sternum, dunno if it is stomach or liver. It was only detectable by touch but is now completely visible, about the size of half a ping pong ball. Two months ago, I mentioned it to my oncologist, and he referred back to the scan reports, which the radiologist didn’t say anything. He reluctantly said it was inflammation. I am too worried about it.

    I know Verzenio is hard on some and tolerable for others. I hope if my oncologist chooses Verzenio, it won’t have bad side effects. He is leaning towards Enhertu, but thankfully, I am not qualified for that drug according to Guardant. I really need your input here, and some good research. I have already studied all the trials that Guardant suggested. Any advice or experience you could share would be greatly appreciated.

  • kbl
    kbl Member Posts: 2,793
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    @denny123 Your daughter is beautiful and a very handsome grandson. I wish them a great future. Funny story. I got married outside. It was back in the day of records. Lol. We didn’t take into account having the record player outside in the Florida heat, and our song on the record to walk down the aisle with melted. Thankfully, someone called the radio station, and they played the song. Oooph, it was hot. It’s so hard when it’s hot. I’m glad it didn’t rain.

    We went down to where we were from in Florida. My daughter lives in a rural area now and is such a foodie, she missed all of her food places. we also live in a rural area now. We stayed close to the beach at Indian Rocks in Florida and hit as many doughnut shops and restaurants as we could in four days. Lol. It was awesome. We also had a good cry because it had been nine years since her and I had been away together.

    @snow-drop I would think Orserdu would still work at .03 I was only .09 when I started, and I’ve been on it almost nine months. I have not tested again. I would think that going down in ESR1 mutation is what Orserdu is supposed to do. I don’t know how they tell whether it’s still working, other than symptoms and/or tumor markers. Mine have actually risen for two months but only 15 total points, so I’m not moving yet.

    Are you Her2 low, 1+ or 2+? That is what makes you eligible for Enhurtu, which is most likely next for me. I’m holding on for dear life to Orserdu for now.

    I’m not sure of Orserdu with another drug. I haven’t researched it because I probably wouldn’t qualify for a clinical trial since I’ve been on it.

    I’m thinking of you.




  • threetree
    threetree Member Posts: 1,471
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    Snowdrop - Re the lump below your sternum; just a thought here from another non-expert. I have had a sometimes painful lump below my sternum (xiphoid process) for years now and I've often been terribly worried that it was cancer related. I got so concerned at one point that I went to an urgent care and the dr there had me get an ultrasound of the area. It turned out to be nothing. I've also looked at all my CT scan reports over the years and no radiologist has ever noted it even being there, muchless being a problem. I was googling around and learned that your xiphoid process can actually become sore and inflamed with certain activity, repetitive activity, etc. Well, mine seems to really act up when I lean forward and use my laptop. The more I use it, the more sore my lump becomes. You might want to think about whether there are any situations in which you lean/bend forward for a period of time and note what goes on with that lump at those times. I stopped using my laptop for awhile for unrelated reasons, and then when I got back to it, the pain started up again. I had actually forgotten all about it after not using the laptop for awhile, and then it came back. Just my two cents, but it might help you relieve some of the worry.

  • cyathea
    cyathea Member Posts: 337
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    @snow-drop I had the same experience as @threetree with the xiphoid process pain and inflammation. Scans were good, and the lump/inflammation eventually reduced. When it was irritated, it was hard to not touch the lump, but if you press on that area, it makes it worse. I hope your lump heals as well. I don’t have any experience with the drugs you mentioned, but I’m hoping that you will do well on whatever your MO recommends.

    Thanks for all the well wishes on my leg/ankle. The swelling around my knee is gone and the ankle has much less than before so the pain is not as bad as it was the first two weeks. I only broke my left leg, so I’m managing to hop on my right leg with a walker. I tried crutches a few days ago, but using them is painful due to my BMX and mild lymphedema.

  • divinemrsm
    divinemrsm Member Posts: 6,207
    edited July 7
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    It’s a busy time for me with extended family getting together thru the week and weekend celebrating the 4th, but I wanted to pop in to congratulate you, denny, on your daughter’s wedding. Wow, what a handsome couple she and her new husband make! Her gown is absolutely gorgeous!!! Your grandson is totally adorable and I love his two different colored shoe laces!

  • seeq
    seeq Member Posts: 1,129
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    @cyathea - I broke both my tibia and fibula back in 2013. I highly recommend renting a knee scooter, if you can. My insurance covered it with a scrip from my doctor - crutches were dangerous for my level of talent. Lol. The knee scooter made a huge difference in my mobility. Just make sure you get one that doesn't oversteer; it will wipe you out. (Reference aforementioned level of talent.)

  • denny123
    denny123 Member Posts: 1,495
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    @divinemrsm -lol thanks! I bought those $100 shoes for him on eBay and they came with both colors of laces. I am surprised that he didn't wear two different kinds of shoes, like he does when he plays basketball.

  • snow-drop
    snow-drop Member Posts: 526
    edited July 9
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    Threetree and Cyathea thank you so much for sharing your experience about the xiphoid process, which I hadn't heard of before. I have peace of mind about this lump now, knowing it is not cancer related.

    KBL I found an old thread back in 2020 on bco, a poster with signature name Dee shared a lot of great information about ESR1 mutation and clinical trials. unfortunately, the poster deleted her account. I hope wherever she is, she is in good health, maybe @moderators can follow up on her? I hope she is fine… It didn't ring a bell, I don't remember if I read her posts before. I got some new meds ARV-471 which is in phase 3 in combination with CDK 4/6 inhibitor. it is good to know as I am not sure if my MO bothers to stay on top of new research or trials of any kind. It is interesting that Elacestrant is not part of any combination in trials for ESR1 mutation. other thread for ESR1 has been inactive since Wendy no longer posts there.