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Introducing myself from Nairobi, Kenya

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See first comment below for Rosebessie's story and welcome her to the community!

This discussion was created from comments split from another thread.

Comments

  • needs.a.nap
    needs.a.nap Member Posts: 162
    edited October 2023
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    Thank you so much for sharing your story @Rosebessie. I love your photo!! I think you are stunningly beautiful! I’m sorry for what you are going through … it cannot be easy.

    Your experience (and that of many others here) is very helpful. I can see more clearly that I will need to be extra vigilant moving forward - to get all my mammograms and ultrasounds on time, perhaps MRIs in the mix to be thorough. Thank you for inspiring and educating me!

  • moderators
    moderators Posts: 7,911
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    Thank you, @needs.a.nap! We have split Rosebessie's post out and added it in a new thread in the Stage IV Open to All forum.

    @Rosebessie Welcome and we hope you find great support here!

    —The Mods

  • seeq
    seeq Member Posts: 1,084
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    @Rosebessie- Welcome. We have a similar dx. I was dxd de novo Stage IV (meaning no previous breast cancer)with liver mets in June 2020. I've been on Verzenio and anastrozole from the beginning and had clear scans for about 2½ years. We are just now suspecting recurrence in the liver - currently waiting for test results.

  • AJ
    AJ Member Posts: 185
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    Hi @Rosebessie ! I met you on one of the zoom meetings. Welcome!

  • Rosebessie
    Rosebessie Member Posts: 58
    edited November 2023
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    Dear seeq

    Thanks for the warm welcome.

    I'm so sorry about that liver mets recurrence. I pray that whatever the doctors recommend will put a stop to its further development.

    This disease is so unpredictable. Sadly NED is never a completely permanent diagnosis. BUT medical science is working for us.

    Let's keep comparing notes.

    Love you 🤗❤

  • Rosebessie
    Rosebessie Member Posts: 58
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    Dear AJ

    So lovely to reconnect.

    How are you doing so far?

  • Rosebessie
    Rosebessie Member Posts: 58
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    Dear needs.a.nap,

    Thank you for your kind words. I feel encouraged.

    Yes, do keep "abreast" (no pun intended, 🤣🤣 with your breast checks. I am glad my experience helped you in some way.

    Sending you hugs 🫂 🤗

  • AJ
    AJ Member Posts: 185
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    @Rosebessie , I’m doing ok. Had to go off the Verzenio because of lung inflammation and feel great. Next week my oncologist will tell me what is next. How about you?
    I usually attend the Wednesday zoom meeting but sometimes the Monday one so we’ll probably cross paths again

  • seeq
    seeq Member Posts: 1,084
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    Rosebessie - results are in and were in a holding pattern for 4 more months. How are you doing

  • Rosebessie
    Rosebessie Member Posts: 58
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    Dear seeq

    So glad you sound positive and hopeful. How's it going with you since the November 7th results?

    I haven't been consistent on the Monday group due to the time and my fatigue so I haven't kept up with your progress. I'm in a bad place since Ibrance is impacting very negatively on my Neutrophils for the last 2 months. The thought of changing treatment scares me. I want to monitor a couple more months but I'll discuss with my Oncologist coming Monday.

  • Rosebessie
    Rosebessie Member Posts: 58
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    Hi AJ, your situation with Verzenio causing lung inflammation is what I used to dread with Ibrance coz I'm asthmatic. Instead it's my Neutrophils that are causing concern. So I'm at a crossroads on treatments.

    Did you change treatments? What are you on now and how is that going?

  • wren44
    wren44 Member Posts: 7,865
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    Welcome Rosebessie. Your experience and treatment is very much like mine only my mets are to the bone. My neutrophils are pretty low too. I like Ibrance because I don't have bad side effects. I started on Xeloda and was so dizzy I could barely walk. My hair is about half as much as it used to be and my DD wants to take me wig shopping. I compromised and bought hats.

    Keep coming back and let us know how you are getting along.

  • Rosebessie
    Rosebessie Member Posts: 58
    edited December 2023
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    Hi wren44, thanks for touching base. How do you intend to deal with the low Neutrophils? Has your Oncologist recommended a change of treatment? How are your scans so far? Ibrance has kept my reports going well coz my last PET-SCAN in October was NED. But with the low Neutrophils and a likely change of treatment line, who knows what direction i'll be heading henceforth 🥺🥺.

    Likewise I have very little hair, so I cut it to the lowest level, without doing a clean shave. I always say hats and wigs were created for a purpose.... my use. So im in them all the time 🤣🤣🤗🤗

    Thanks for your encouragement. Love and hugs 🫂 🤗 ❤

  • AJ
    AJ Member Posts: 185
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    @Rosebessie , I’m back on Verzenio after a month of steroids. But at 100 mg twice a day. So far the lung issues seem to have resolved.

  • Rosebessie
    Rosebessie Member Posts: 58
    edited December 2023
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    Hi AJ, Wonderful to hear that you're doing well on Verzenio after a month of steroids. I'm guessing the steroids helped a lot with the lungs inflammation in that one month. Is the Verzenio 100mgX2p.d a strong dose? The beating our bodies have taken is unbelievable. I wish you well and sending big hugs to you.

    I currently have a cough after starting my Ibrance yesterday. I coughed so much today, I got panicky about ILD. I'll schedule to see a Pulmonologist after 1st January. My worst cough is at night when I so desperately need sleep, so I wake completely exhausted. Maybe at my next break I'll try some steroid tablets fir a week. It's usually my last resort.

  • AJ
    AJ Member Posts: 185
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    @Rosebessie thanks for the words of encouragement. I started on 150 mg twice a day and my oncologist lowered it to 100. The side effects are not as bad.

    I hope your cough gets better. A pulmonologist can find out more. What does your oncologist say?

  • Rosebessie
    Rosebessie Member Posts: 58
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    @AJ Sounds like it's a much smoother treatment plan. That's a relief. Please keep sharing your experience. My Oncologist asked me to monitor the cough. I've decided to do a few days of steroids for now coz I know it won't subside untreated. That usually helps. I wish you a very Merry Christmas with no health crisis 🫂🙏💕

  • seeq
    seeq Member Posts: 1,084
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    Rose, thanks for checking in. The sample from my biopsy didn't show much active cancer. It was more suggestive of treated/residual tumor, even though PET-CT showed increased uptake. Sooo, re-scan PET and MRI at the end of February and go from there. It's the best result I could hope for, I guess. DH had his second knee replacement in November, so he should be doing well by the time I re-scan.

    I hope your cough resolves. It's so hard to know what to worry about and what to let go. I think it's always better to have it checked out.

  • moderators
    moderators Posts: 7,911
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    Oh that's good to hear, @seeq! Does seem to be the best one could hope for. I suppose we'll see what the re-scan in February says then!

    Hope you both had a good Christmas, @seeq and @Rosebessie. 🎄☃️

  • AJ
    AJ Member Posts: 185
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    @Rosebessie

    I hope the steroids help. I’m still doing ok. See the oncologist today. I don’t think we’ll have much to talk about. Which is a good thing!

  • Rosebessie
    Rosebessie Member Posts: 58
    edited December 2023
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    Dear @seeq I'm really happy the Biopsy didn't show much active cancer. Enjoy that news coz I'm celebrating it for you too. With this disease, I just let the future sort itself coz things can turn so suddenly. All the best to DH for knee surgery recovery. Hugs to you🫂 and Merry Christmas 🎅

    I started the steroids and the cough subsided immediately. I'll just take them for 7 days, tapering down to 1 tab p.day. My last PET-SCAN didn't indicate any concerns in the lung area so im guessing this cough is my usual lungs inflammation triggered by the usual factors, ibrance being no.1 culprit. Coz I'm not in pain and not wheezing.

    @moderators thank you, I had a lovely quiet Christmas and then attended my niece's wedding yesterday and danced my arthritic knee to near disability 🥴. I cannot control myself at weddings 🤣 I wish you all a lovely holiday season. Much love ❤

  • Rosebessie
    Rosebessie Member Posts: 58
    edited December 2023
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    @AJ hi there, how's Christmas week going? I think I've eaten for an entire month in the the 2 days.... heavy Christmas Dinner followed by a wedding yesterday 😋 😊. I must have put on several kgs, which I definitely do not need. Did you see your Oncologist on 26th like you mentioned. I hope that went down well. My cough is better now that I'm treating it with steroids. Have a lovely day my dear. Hugs 🫂

  • AJ
    AJ Member Posts: 185
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    @Rosebessie Im glad the cough is better. My Christmas was quiet. I’ve also been eating a lot and have gained 10 pounds since diagnosis a year ago. My oncologist visit was short. She just wanted to follow up on the lung issues. My lungs are back to normal and I’m feeling pretty good. Brain MRI next week. That one makes me nervous because progression in my brain means brain radiation. I want to put that off as long as possible. You too, have a lovely day.

  • Rosebessie
    Rosebessie Member Posts: 58
    edited December 2023
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    @AJ Yesss!!! 🤗💕🙏. Clear lungs is good news considering how hard they get knocked by the treatments. A little jig to that. I pray all goes well with the brain MRI. BIG HUGS 🫂