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My Husband, My Life, My Love, My Family, My Cancer

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  • threetree
    threetree Member Posts: 1,426
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    Emac - You're getting 90 today, well up the road a ways, we're getting 80. Looks like a very unusual Pacific Northwest thing is going on weatherwise these days. Not sure if I'm ready for 80 today or not; mixed feelings.

  • mara51506
    mara51506 Member Posts: 6,195
    edited May 10
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    Made another Walmart deliivery order. I am buying the stuff in order to make authentic egg mcmuffin with green leaf lettuce, ready crisp bacon, don't like all the grease of regular bacon, sliced kraft cheese, adding butter and mayo, will be cheaper for those ingredients than ordering off skip the dishes and probably better tasting and already have the hashbrowns. Using the proper egg mcmuffin maker to cook the egg, cheese and bacon together, let cool and go from there adding the mayo and grean leaf lettuce after it cools. Might be nice to also make some good grilled cheese vibes as well with different things.

  • sondraf
    sondraf Member Posts: 1,614
    edited May 10
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    Well @candy-678 its interesting that you ask that question as I have an answer to it. My phone started blowing up during my hair cut on Wednesday afternoon and when I finally got around to answering when I got home it was my oncologist calling to tell me my final path results came back from the bone biopsy. I actually gained an HER2 receptor so Im now ER+, PR-, HER2+. She was so excited to give someone some good news for once, ha! Then I went to my first Taxol infusion on Thursday and had an immediate and awful allergic reaction and severe bone pain. Swings and roundabouts I guess - they are swapping in a Phesgo injection along with Abraxane next week and dropping Carboplatin for now. But she did say 'it shows the bone biopsy was the right thing to do as we wouldn't have found this receptor gain otherwise'. To say its been an eventful week is an understatement!

    Edit - to clarify for @shanagirl Im bone-only and my liquid biopsy in May last year did not show anything about receptor status, just minor genetic changes and nothing big and targetable. We only just found that this soft tissue tumor in my hip is heterogeneous with ER+/PR-/Her2+ cells and those that are just on the borderline Her2+ (so 2+ low). If that makes any sense, Im still trying to get my head around this, but it means I now have Her2+ treatment lines available to me and a reasoning as to why this tumor is functioning slightly differently to others that are stable. However, it does seem that actually obtaining a bone biopsy is not an easy thing, this was only decided after months of pain and confusing scans and them needing to just get in there and see what the hell was going on.

    I haven't gotten 'the folder' together yet but I know its getting to be time to at the very least have passwords and directions to various accounts sorted, not to mention grouping accounts so things are under one roof and more manageable. I have no idea how to access to my pension money here, for example, and I need to talk to a money and tax expert on that. Im starting to feel better so perhaps that is a project for this month and June. Getting hubs on my bank accounts really would be a smart idea too especially on this side as I have a lot of money parked in there.

  • intolight
    intolight Member Posts: 2,217
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    Wow, so much catching up to do. For some reason my bco email notifications went into my spam folder, so I missed a lot. I do have a DNR and my DH is my POA. We have a Living Trust and since I have a lawyer son and a nurse daughter, we have discussed things and it should all be in order. In ten days it will have been eight years since my original Stage IV diagnosis. That being said, they still ask if I am at the hospital if I have a DNR. I use a large medical company for my care so my records are easily accessible (there are four hospitals in the system and I use two regularly.) That is fine with me as my PCP and MO can see my treatment progress on the portal.

    My half-sister and her two teen boys want to visit in July (they live in another state.) Since I only met her four years ago and have never met her boys, I do want to see them, but I am hesitant. I know I don't have the energy to entertain or even guarantee the house will be clean. Am I being selfish if I suggest they use a hotel? I have two guest rooms here they could stay in and they don't have much money… I would love your opinions…

  • mkestrel
    mkestrel Member Posts: 163
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    I have the advanced directive from the state. I should check it and make copies. Bad scan, with new mets to liver and sacrum…That's the first met in the organs for me. I'm not telling my fam, ruin the finally sunny weekend. I have treatment appointment Monday but who knows what will change now since I can't tolerate the higher doses of Verzenio or Ibrance. Increase dosage of Fukitol.

    Intolight it's hard to know what to do when you don't know them very well. Doesn't mean you're selfish. I have energy drain just doing a BBQ, wiped out for days. Maybe offer the rooms but say you need help with things and they need to do their own food and clean up?

    In other news I see there is a big solar flare and we might see the Northern lights here! I hope so. I will stay up or get up early and look.

  • tougholdcrow
    tougholdcrow Member Posts: 73
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    @shanagirl My tumor genetics had already changed between the main tumor and the lymph node spread. The main tumor was ER+ 90% PR+ 90% HER2-0. The lymph node biopsy showed ER+ 90% PR+20-40% HER2 +1. My genetic test showed CHK2 and an "activating" PIK3CA (whatever that means). So yeah, these things change. I had a bone biopsy that did detect estrogen content and GATA3, but didn't have any other info, at least from that lab. My onc said we'd steer the course with kisqali/letrozole/zometa but that the other genetic changes would have relevance for the future.

  • emac877
    emac877 Member Posts: 688
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    @shanagirl I'm sure there is someone on here that knows more than I do. I will explain what my understanding was when my MO recently tested my original tumor biopsy for the PIK3CA gene and PI3K. Right now I can't remember what I am. I think I have them both but my brain is still messed up. Basically my understanding is that the PIK3CA is a gene that regulates how cells work and replicate. PI3K is an enzyme that is part of that process for cell regulation in people who have the PIK3CA gene. That's probably a simplistic explanation but was the best I could do when my MO explained it to me. The implication is that you may have more drug options available to to take now that they know you have that gene. Please, anyone that has more knowledge correct me if I'm wrong.

    @illimae I'm glad to hear you are safe.

    @threetree Not sure we officially hit 90 but it felt like it. Kind of worries me for the fire season and what we call "smoke season" down here.

    @mkestrel We are supposed to see them in Southern Oregon too! I am hoping I can wake up or stay up late enough to maybe see them. I've always wanted to. In regards to family I think I would be very frank and let them know you would love to see them but they need to be aware of your limitations and may need to help with meals etc. That's what I have to do with people.

  • irishlove
    irishlove Member Posts: 510
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    Good midnight all. @mkestrel Oh that scan is so darn disappointing. Your team sounds like someone very trustworthy and they'll get the meds right. I hope it happens soon and you have a lovely weekend.

    Had my buttocks shots today. Left was still painful from last time. I believe it affected my sciatica. I had also had my last radiation of the spine and hip area last month, when they did the shots. Maybe that was the culprit. Happy to say my fav nurse took care of me and I pointed out the painful area, which she avoided. Did I or am I imagining there is a pill form so as to step away from shot??? That would be a great day… Blood tests showed I'm anemic. I've been pushing thru it.. Guessing with GI problems absorption of food is a problem. Started a pre and probiotic. Seems to be helping.

    We were safe from the storm. Our kids in Charlotte had no damage but surrounding area sure did. Tallahassee had 4 tornadoes Friday morning. We haven't had rain in 2 months. The birds are thristy, my birdbath is busy. This is the 2nd siting of a green bird. I had a closer look at him/her. Has a pom pom crest, appears to be all green, slightly larger then a parakeet. Loves the sunflower seeds.

    Be safe and in your pockets for screening and life in general.

  • micmel
    micmel Member Posts: 9,949
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    Mkestrel~ I am thinking of you and your progression to the liver. I had originally had a tumor in my liver too, it was so small and in am such a place that they actually went in and took it. I was also told that targeted therapies help with liver tumors as well , which is why I was going to start ibrance at the time. I am holding your hand and thinking of you. One day at time with something like this. But I’d ask them about it. I was 45 when I was diagnosed and this happened around that time so I was younger. And it was one hell of a surgery. But thank god above (if there is one) no liver tumor anymore. It’s been 8.5 years. Sending hugs !

  • goldensrbest
    goldensrbest Member Posts: 671
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    Mkestrel - so very sorry that you have progression. We are here for you! Hugs from afar🤗🤗🤗

  • candy-678
    candy-678 Member Posts: 4,126
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    Mkestrel- I am sorry to read of your new liver tumor. Thinking of you with your MO appointment to discuss next treatment.

    Shanagirl- I am not that scientific as Emac in explaining the mutations. All I know is that I have read that we are aimed at "actionable" mutations, those that have treatments/trials against them. PIC3CA gene has a couple of oral meds approved, so those could be options for you in the future.

  • micmel
    micmel Member Posts: 9,949
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    welcomes to you tougholdcrow! Nice to see you here. We always live visits to our second home! Hugs and snacks your way!

  • mkestrel
    mkestrel Member Posts: 163
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    Thanks for the kind messages. I will see what they say Monday.

    Here was the view from my yard! My niece saw it from the mountain.

  • threetree
    threetree Member Posts: 1,426
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    Mkestrel - Beautiful! Thanks for posting.

  • malleemiss251
    malleemiss251 Member Posts: 364
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    @mkestrel, I am thinking of you for your appointment on Monday - I am sorry about the scan news. I am hoping Monday will bring better news.

  • shanagirl
    shanagirl Member Posts: 370
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    .Good afternoon everyone, ….The struggle is real. I have had such awful bone pain since my 3 Xgeva & Fasoldex monthly injections la week ago last Thursday. Have been living on Voltaren Gel and Motrin. My whole spine and ribs on right side, and lower back all very painful. Have not been able to bed or walk. It’s been like this all week and last weekend. If I feel this way tomorrow, I will not make Moher’s Day with the kids at SIL’s & DD’s restaurant tomorrow.I already cancelled going to my ex DIL’s invitation to my GD’s graduation party. I think ex DIL was a little annoyed. But I don’t want to be at any social function feeling this way.😔. I go for NM Bone, PET/CT on the 16th next week. I’m On the heating pad right now.

    @mkestrel that picture of the lighted sky is beautiful. It would make a beautiful gradient painting. I am so sorry to hear of your progression. That really sucks. Sending warm wishes and gentle hugs to you, girl💕

    @tougholdcrow Yes it’s a little confusing.the only biopsy I ad since bone met diagnosis was the Liquid biopsy. But my targeted treatment meds are for hormonal fueled cells. I’ve been stable since with all my scans and CA/27 Markers have been down, so I guess I shouldn’t be worried. But this bone pain increase has me concerned. Oh…and it’s nice to meet you😊🩵

  • malleemiss251
    malleemiss251 Member Posts: 364
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    @tougholdcrow, I have scans at the end of May, and I am also getting some scattered pain that is not constant and after 2 or 3 days it goes away. The same happened before previous scans - although a number of the spots where I had felt this isolated pain were no longer taking up contrast (my bone lesions are all sclerotic) so I am hoping it will be the same for the upcoming scans. I do not get the pain @shanagirl is having. In pockets for support and hope all pains are manageable if they do not go away.

  • threetree
    threetree Member Posts: 1,426
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    Shanagirl - You are not alone, as I am in a very similar boat. I had the Faslodex about 3 weeks ago, and that's now "just" doing it's usual thing, but I had my Zometa (like Xgeva) shot a week ago yesterday, and I am continuing to just feel awful. Aches and pains everywhere, bad fatigue, digestive trouble/bloating. Just laying around doing pretty much nothing. I had to come back from a walk the day before yesterday, because I only went a few blocks and started to get really fatigued. This was my 3rd Zometa and I thought they were supposed to get better after the 1st one. This is either Zometa or I've got sudden big time progression going on everywhere in my body. I get scans in early June, so I guess that might tell; Zometa or progression? Next Faslodex shots this coming Wednesday and I'm dreading them. I can't imagine getting the Zometa and Faslodex at the same time as most do.

    I am so sorry to hear that you too, are having so much trouble with these drugs. It's really odd how some don't have much trouble at all and others have lots. Very sorry to hear you will miss the family Mother's Day celebration, but I get it. I am thinking of you and hope you feel better very soon!

  • illimae
    illimae Member Posts: 5,617
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    @mkestrel Beautiful photos! The northern lights is on my bucket list. Doubt I’ll see it in Texas but I will be looking tonight, just in case.

  • micmel
    micmel Member Posts: 9,949
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    beautiful pics. My bucket list too. Just gorgeous! Ty for sharing

  • shanagirl
    shanagirl Member Posts: 370
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    @threetree Back in 2009 I was being treated for Stage IIIA BC and after surgery I met my Oncologist at the recommendation of my Breast surgeon. The Onc put me on a treatment plan of ACT, Neulasta shot day after, and a Zometa infusion every month. I don’t remember If I had any bad side effects from the Zometa since I was already miserable on the chemo infusions and Neulasta🤷‍♀️ but at least back then I knew the treatment would end. But with Stage IV, treatment is for life and we can’t look forward to an end to taking theses drugs and feeling lousy. Tonight I still cannot get up from a chair, toilet or bed without excruciating pain in my lumbar spine and ribs. I have not felt this bad the entire time since being diagnosed in January 2023. I’m always more sensitive with bad weather changes and storms coming but then it passes and I’m better. I saw the photographs of the lit up sky northern lights from the recent geomagnetic sun storm and now I’m wondering if this is why I am in so much pain with my bone mets the last 2 weeks. Just curious.

  • sf-cakes
    sf-cakes Member Posts: 559
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    MKestrel, beautiful photos of the northern lights! I'm sorry to hear about your latest scan results, and I hope you and your MO come up with a treatment plan that is good to you.

    Mel, I do have an Advance Directive in my patient chart, when I had surgery in January they were happy to see it there. It does stipulate that my Mom can make medical decisions for me if I'm unable, and she knows exactly what I'd be okay with and not okay with.

    Seeq, hope you are doing okay, sending you love. Loss of a loved one can hurt so much.

    My MO has told me that she will recommend trying to get a tissue biopsy when there's new progression, specifically to test the ER/PR/HER2 status (as well as other mutations). We did do a bone biopsy when I was first diagnosed, and while bone can be difficult to get a sample from (they had a wee bit of trouble getting mine out), it can be done a lot of the time.

  • cookie54
    cookie54 Member Posts: 718
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    mkesterel Wow, that is gorgeous! So glad you were able to see it and I can only imagine the view from the mountain. Stinks about the liver met , I 'm very sorry to hear this.Sending good vibes and strength your way for tomorrow. keeping the faith that your MO will make the appropriate changes to squash this!! Hugs.

    Shanagirl I'm so sorry to hear of your struggles lately, it absolutely stinks! Of course you don't feel up to any kind of celebration when you're suffering. As we always say some people haven't a clue. Wishing you a better week ahead.

  • micmel
    micmel Member Posts: 9,949
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    Happy Mother’s Day to everyone. Even those that are without their mother. Like myself. It’s going to be a tough day for me today. My first Mother’s Day without my sweet mom. My heart is heavy. I hope all you mothers out there have a nice relaxing day.

  • sunshine99
    sunshine99 Member Posts: 2,644
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    I'm trying to catch up here. Don't know how I got behind…

    To those who are having more pain, I wish you peace and comfort.

    To those who are missing their mothers (I'm in that group) I wish you peace and joyful memories today.

    I'm meeting with the palliative physician on Wednesday. Looking forward to it. It's a video visit so DH can be there for it. I'll get my list of questions/concerns together.

    Love to all,

    Carol

  • seeq
    seeq Member Posts: 1,111
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    I'm back from Colorado, physically and emotionally exhausted. It was good to see my family, although not under the preferred circumstances, and I am so happy to be home. I slept 11 straight hours last night. DH took me out for lunch and we are staying in with a Walmart pizza tonight, which is just right.

    Kestrel- thanks for sharing that picture. Sorry about your progression. Try not to worry too much about the liver mets, specifically - there are several of us that are being successfully treated.

    Shana - Sorry you're having such a rough time. Ugh! Would your (ex?-) DIL prefer that you show up and be a downer, because you feel so bad? She didn't think that one through.

    Re: DNRs I have one, but it's situational - it's not a blanket never-ever statement.

    Waving to everyone in the room

  • mara51506
    mara51506 Member Posts: 6,195
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    I do have my DNR ready, hospice will be when my treatments have to change, personal reasons why I feel the way I do re treatments and not wanting to jump around whilst on my own.

    I got lazy, ordered an egg mcmuffin this morning, have some housework to do. Bought a dish drainer that is supposed to stretch over the sink, be nice to wash up dishes and stack and leave a while. Watching ads on TV for money, can watch tv shows on my laptop instead. Helps bring down some costs for me on food or whatever I get.

    Hoping everyone has a good day and of course in pockets for all.

  • tougholdcrow
    tougholdcrow Member Posts: 73
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    @malleemiss251 I hope all your aches and pains are benign. I honestly can't tell whether my very mild pains are from mets or being 66. My scan is in June, so my hopes for us both to sail through with nothing new.

    @mkestrel I am kicking myself for not going out for the northern lights. I have seen them twice, in Traverse Bay and in Alaska's Denali park, but nothing on this scale. I read that we are in the sun's maximum in an 11 year cycle, to here's hoping that there will be more auroras for us to see either now or in 11 years.

  • tougholdcrow
    tougholdcrow Member Posts: 73
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    @shanagirl I'm not entirely sure what "in your pocket" means, but I want to wish you good scans in a few days and "in your pocket"? Yes.