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When it is no longer just fatigue and drug side effects

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24

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  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    That's a beautiful photo, Moissy. I love roses.

    B-A-P, I see that we share similar experiences of major changes to our bodies and abilities, and important things taken away suddenly without warning. It makes the mind reel. It is indeed depressing. I hope so much that we can both find ways to get something back.

    Bestbird, I had no idea the extent of your difficulties. Please don't run yourself in to the ground. Ask for help from any source you can.

    Moissy, Bestbird, B-A-P, Moth, Serendipity, cyathea, aprilgirl, MinusTwo, thank you for your good wishes.

    My tumor markers went up this week. My onc says we will not change plans yet. I got a new port. It was a rough day and I employed a strong painkiller that evening. Still really sore. But the darn leaky PICC line is gone. (It was a temporary while I healed from removal of the infected port. Because there have to be complications, right?)

  • kbl
    kbl Member Posts: 2,772
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    ShetlandPony, I’m so sorry for what you’re still going through. I’m glad you got the PICC line removed. I think if you often. Thank you for the update.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    ShetlandPony - I hope your port is less sore and your TMs drop. Since you can't get out to your garden, here's a virtual tour of the Montreal Botanical Gardens. It's a series of greenhouses. I haven't been there since before BC. Wish the video had smellavision, but the water features sound nice.



  • lw422
    lw422 Member Posts: 1,403
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    Shetland Pony--I'm at a loss for words; I wish I had some magic to heal you...and all of us. You were one of the first calming voices when I arrived here a year ago, terrified and clueless. I appreciated you then and I appreciate you now. I hold you in my thoughts and am ever hopeful that the new treatment will work for you, and you'll have that bagel and cream cheese soon. Many virtual hugs to you, and thanks for sharing with us.

  • chico
    chico Member Posts: 194
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    Shetland Pony I always try and read your post mainly because I used to have Shetlands. I so hope that Enhurtu and the spirit of the Shetlands can help you and keep you safe.

  • goldensrbest
    goldensrbest Member Posts: 671
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    This is the side of cancer that those damn drug commercials fail to portray. Virtual hugs to ShetlandPony, Bestbird, BAP and all the others with this disease that sucks us dry

  • nkb
    nkb Member Posts: 1,561
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    SP- hugs and I am hoping today is a good day.


    serenitystat- Thanks for the tour of Montreal botanical gardens I was there a few years ago when my son was in school there and saw my first Yew (Taxol) tree.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Nkb - Glad you visited the Botanical Gardens. It’s a great place to go. I don’t recall the Yew tree, but I last went before I had Taxol. I should do a pilgrimage. I missed this one also.

    image

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Shetland, I have struggled to know how to respond as it breaks my heart to hear that you are suffering so much. I think we all fear the reality that you are facing, things changing quickly, robbing us of the normalcy we try so hard to maintain. But, please maintain hope. In the time I have been on BCO, I have seen the pendulum swing back again and I pray that your treatment beats the cancer back to get you back to gardening, dancing and, most importantly, eating all your favourite foods! Until then, know that you have a community here that cares and we’re all holding you in our hearts.

    Ann, I was saddened as well to hear you are also struggling. You have been such a staunch supporter of all of us with MBC and you too are cherished on this site and others. My thoughts and prayers are with you and your husband

  • nkb
    nkb Member Posts: 1,561
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    well

    Said Sadie’sservant

    I missed that one too Serenity.

  • seeq
    seeq Member Posts: 1,110
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    ShetlandPony- I've been thinking of you for the last few days, so I'm dropping by to send gentle cyberhugs your way. Sorry you had the port infection, but glad it's resolved now.

  • serendipity09
    serendipity09 Member Posts: 769
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    ShetlandPony - just stopping in to let you know that I'm thinking of you. Hoping that today's a good day for you. {Hugs}


  • FarAwayToo
    FarAwayToo Member Posts: 79
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    ShetlandPony - I'm not stage IV but I just wanted to send you my virtual gentle hugs and support.

  • lillyishere
    lillyishere Member Posts: 773
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    SP, I have been thinking of you. I'm sending you love and a kitten to keep an eye on you. Hug

    Super-Cute Kitten

  • kbl
    kbl Member Posts: 2,772
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    ShetlandPony, I am also thinking of you. Just thought I’d say hi. Hugs

  • kelq
    kelq Member Posts: 56
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    Hi Shetland Pony, stumbled upon this and recognized your name from the Ibrance thread. Haven't been spending much time here because I feel like all the "familiar faces" are having troubles and it saddens me. I, too, am having troubles so I remind myself that we are on this journey together. Ibrance ended for me with catastrophic side effects - dredded lung inflammation. Stopping ibrance led to quick progression of my cancer. Finally got myself back together after that and started a new regimen of faslodex & affinitor and the affinitor was worse. Developed severe pnuemonitis, extended hospitalization, and find myself on oxygen now. Barely have the stamina to walk around my house. I read an article the other day that said something along the lines of "give it what you got". If it's only 1%, thats better than zero. If 1% leads to 2%, you are rocking it! If you can only do 1 dish today, great, it's 1 less to do tomorrow. Trying to live by this (easier said than done) and enjoy life even though I often feel discouraged. Thanks for sharing your update - you are in my thoughts!

  • seeq
    seeq Member Posts: 1,110
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    "give it what you got". If it's only 1%, thats better than zero. If 1% leads to 2%, you are rocking it! If you can only do 1 dish today, great, it's 1 less to do tomorrow. Trying to live by this (easier said than done) and enjoy life even though I often feel discouraged.

    KelQ - thank you for this. I think it's great advice for any phase of treatment.

  • kbl
    kbl Member Posts: 2,772
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    KelQ, boy, that really sounds rough. I’m so sorry that the medication that was supposed to help may have made things worse.

  • amontro
    amontro Member Posts: 185
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    Shetland -

    I, too, have been monitoring this thread. I haven't posted because, like KelQ, I don't know what to say, and that saddens me.

    Of course, you are in my heart along with the rest of us here.

    Keep us posted.

    Love,

    Anna

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Thanks, Serenity; I enjoyed the Montreal garden tour.

    Thank you all for the hugs and good wishes. I feel your support and there is no need to think of more to say.

    KelQ, right now I have zero. I mean, I argue with myself for several minutes before making myself stand up and go brush my teeth. I am malnourished and underweight, and cannot obtain the lipid TPN (IV nutrition with fat) that I need. Nobody has any to send me. I'm so sorry the meds did you wrong. If you find yourself having zero days too, don't be hard on yourself.

    Recently DH and I have enjoyed a couple birdwatching sessions with binoculars, just sitting in one spot. We have seen several birds we did not know were around here. So that has been a very nice thing and we plan to keep doing it. Since I can't work in the garden, this is a good alternative.

  • anotherone
    anotherone Member Posts: 547
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    shetland , after what you have written about bagles and cream cheese I went nought them and eaten them crying intermittently. Now I have one more snack in my repertoire- while I still can eat ...

    I am sorry you are in this place. I wish you for something to sort it to exist and be found by either you or someone who helps you.

  • cyathea
    cyathea Member Posts: 334
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    ShetlandPony, I’m glad you got to see some new birds. I love seeing them, too. I’m concerned that you don’t have the TPN that you need. I hope it becomes available soon.

    KelQ, I’m sorry to hear you’re having a rough time as well.

    ((Hugs))

  • kbl
    kbl Member Posts: 2,772
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    ShetlandPony, thank you for writing. I think if you daily.

  • lulubee
    lulubee Member Posts: 903
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    Shetland, my longtime comrade of the bratty bile duct brigade... no no no. My heart aches for you. I've been on a break from the boards due to some recent hard losses within my circle of friends (blasted covid), but I kept regularly thinking of you and wondering how you were, so I checked in... and now I know why you were on my mind. You've been through so much, too much, to be honest. I want you to feel comfortable and at peace, with room for joy and delight. I want you to have that toasted bagel. With ripe strawberries and a mimosa. That's what I want, that's what I pray for.

    My situation has slipped into a new chapter as well (scans showed liver mets yesterday), but my woes are best kept for another thread. This one, my dear, is about you.

    I hope today you can visit that beautiful, warm beach we can all go to in our imaginations. That's where I've gone during all my scans and surgeries over these 15 years. You can borrow my cushy beach recliner under the palm trees near the shoreline. A sweet pony will deliver cinnamon rolls and fabulous novels to you.

    Be better soon, friend.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Aww, thanks for checking on me, lulubee. I'm so sorry about your recent losses, and the liver mets too. One thing I can say is it seems a lot easier to treat and live with liver mets than the weird ILC mets.

    I so wish I could go to that beautiful warm beach IRL. I remember the feel of the water and the magic of the coral and fish when snorkeling. DH and I were just waiting for covid to calm down to plan a vacation. Looks like that won't happen. I do find delight in my garden, seeing what just bloomed, rubbing the leaves of the scented plant collection, watching the wildlife. Thinking of a day trip or overnight somewhere close to nature, but my low energy level and the logistics make it feel daunting. I got a wheelchair to take since walking any distance is too hard. Haven't tried it yet.

    I finally have lipid TPN again, but even so I lost more weight. It is frightening. Liver enzymes rising. Either/both of these could be due to TPN, Enhertu, or the cancer. I had my third Enhertu infusion, and if in three weeks things are not better, I believe we will try Gemzar. We need to do it before I fade away from starvation. Gut symptoms seem better but three tumor markers mostly rise. I can only use infused meds since my body cannot process oral meds properly. And it has to be something that is not too taxing on me.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Dear, dear ShetlandPony, sending a virtual hug your way. I'm sorry you are continuing to lose weight and sincerely hope the Enhertu turns things around so that you are back in that garden soon. Until then, enjoy the bird antics as spring slowly arrives. (They are keeping me busy here with feeding and warming of hummingbird feeders!)

    Please know you are in my thoughts and prayers.

  • lw422
    lw422 Member Posts: 1,403
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    ShetlandPony--I've been thinking about you and wondering how you're doing. Just wanted to say that I am hoping things are better and you can check in soon. Take care.

  • seeq
    seeq Member Posts: 1,110
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    ShetlandPony- you have been on my mind these last few days. I hope you are enjoying warmer weather and sunshine in your garden. Love and hugs.

  • 50sgirl
    50sgirl Member Posts: 2,071
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    ShetlandPony, You have been on my mind. I hope you are doing okay and are able to spend time enjoying your garden and the improving weather. I know you have been through some difficult times. We are all thinking about you.

    Hugs and prayers from, lynne

  • serendipity09
    serendipity09 Member Posts: 769
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    Shetland Any - just reaching out to let you know you are in my thoughts. Hoping that you have been able to spend some time in your garden and doing other things you enjoy. <3