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Comments

  • susaninsf
    susaninsf Member Posts: 1,099
    edited December 2018

    Was interviewed for this Healthline video about metastatic breast cancer mentors and if you click on my name at the bottom of the web page, you can read an article I wrote: MBC Mentors

    Hugs, Susan

  • iwrite
    iwrite Member Posts: 746
    edited December 2018

    Susan- Your video and the story were amazing and heartbreaking at the same time. Thank you for sharing.

    This is my first time on the lung thread. I’m usually hanging out with bone and Ibrance. Haven’t exercised enough lately to post in the fitness one and have plans to bake cookies.

    I have a question for you all. I had a CT yesterday and it came back showing a diverse cloudy area in one lung. My Onc thought it might be early pneumonia, but I feel great. All my tumors are strands or sheets except for one tiny bump. Typical ILC. Sooo my thought is lung mets.

    Have any of you with ILC had mets show up that aren’t clear lesions or spots?

    I have lots of trust issues with docs...

    Thanks for any information!

    This looks like a great group!

  • Jaylea
    Jaylea Member Posts: 440
    edited December 2018

    Susan, wow, what a moving and inspiring video. You sound fulfilled and at peace all at once. I'm not there yet, but will keep at it.

    Hi Iwrite, good to see you but I'm hoping not for long. I'm IDC but will report that all my lung mets are solid tumors. And even though they were small, I was SOB, had a constant cough, and a tight chest. So the fact that you're feeling well is a positive. Has your MO told you what the next step is? I will be praying that the cloudy issue is just an anomaly and the next time we meet up will be on bone or Ibrance thread.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited December 2018

    Hi Lwrite,

    I am, in theory, not ILC either but have wondered if there might be some ILC involved given how my cancer is behaving. My “lung” mets are all in the pleural lining, no solid tumours. It then spread to the peritoneum, again showing up more as thickening. I’m not sure if this would be consistent with the results from your scan.

    I had a lung full of fluid with the pleural mets initially but now am doing well. Hope you get some answers from your MO.

  • Beatmon
    Beatmon Member Posts: 617
    edited December 2018

    Susan, I got to meet ANN Silberman a few years ago at a party I hosted for a group of women from bc.org that gets together every year in Las Vegas. She was so nice and easy to visit with. You both seemed very relaxed in your video and I’m sure it has helped a lot of women

  • iwrite
    iwrite Member Posts: 746
    edited December 2018

    Thank you Jaylea and Sadie...that helps.

    Woke up with a cold and sore throat this morning so maybe it’s walking pneumonia instead of lung mets. We do get some great choices from the cancer menu, eh? Hoping to get some antibiotics tomorrow.

    It’s the worst few days for wbc counts ...of course. And Xgeva and labs and melanoma Mohs surgery this week. Livin’ the dream

    Hope everyone enjoys a good week with lots of hugs and no cancer reminders!


  • susaninsf
    susaninsf Member Posts: 1,099
    edited December 2018

    Thanks lwrite and Jaylea!

    Beatmon, Such a small world! Ann is a fantastic woman. We are both lucky to have met her.

    Hugs, Susan

  • Jaylea
    Jaylea Member Posts: 440
    edited December 2018

    Iwrite, nowhere did I think I'd wish for someone to have pneumonia. I'm still hoping that it's a gremlin in the CT scan. Adding prayers that you recover quickly from the cold and MOHS. Keep us posted...

  • novagirl
    novagirl Member Posts: 82
    edited December 2018

    I found out yesterday that I have lung Mets too. I didnt ask to see the actually CT scan but I read the report. It say inumerable tumors. So I have so many that the radiologist didn’t even count them up. I’m not getting a biopsy of my lungs only my spine. Should I be getting a lung biopsy too?

    This is dreadful right now, my back and hip pain is so bad. I took a Tramadol last night and that didn’t do anything for my pain. I threw up all night, I was sweaty, and had a racing heart.

    I’m getting very scared because I can’t tolerate any pain meds and I’m newly diagnosed. I am In significant pain and having mobility issues.

    Susan, your video was very good. I hope I can get there one day.


  • iwrite
    iwrite Member Posts: 746
    edited December 2018

    imageNovagirl- I hope the doctor gave you some idea about a plan to address the lung situation! Tylenol does more than tramadol imho... without side effects. Do you have a palliative doc to help you with pain?

    I've been using a heated pack on my back at night and it helps just enough to help fall asleep.

    Have you all noticed slow healing times? This cold is dragging on...No pneumonia so it looks like that shadow could be mets. Skin surgery on Monday...wide excision rather than mohs.

    MBC is truly like an awful game of whack a mole...

    I'm putting on a face mask to make toffee and then sending Christmas cards today. Planning to squeeze in all the memories I can. My new grand daughter met Santa this week. She's not a fan!


  • twiggyOR
    twiggyOR Member Posts: 246
    edited December 2018

    I'm sorry to hear your news Novagirl. I have a lung biopsy on Wednesday followed by a CT and bone scan the next week. I'm really scared about how much worse the news will be. This waiting is the pits! I started on Lexmark for anxiety today and now I have a headache and nausea on top of everything else.

    I hope you find something to ease your pain.

  • Jaylea
    Jaylea Member Posts: 440
    edited December 2018

    Novagirl, so sorry to hear of your progression. At dx my PET and CT showed tumors in my lungs, lymph, and bones. The question was what to biopsy? In my case they went for the lung because it was the bigger target. So I'm thinking your lung tumors are small and your spine presents an cleaner target. Also, for what it's worth, a lung biopsy presents other dangers. I ended up with a collapsed lung and had to spend the night in the hospital. As to pain, work with your doctor and read these boards for advice. There may even be a thread for pain management. But know that once you're on a treatment plan and under control, the pain should ease significantly.

    Iwrite, was just thinking of you! What a great shot of your granddaughter. Everything seems worse in the winter, very creaky getting out of bed. Toffee and a cup of tea sounds perfect right about now.

    TwiggyOR, have you been dx with progression or are you in the "let's see what's going on" phase? Agreed, the waiting and the not knowing are the worst. And I mean literally. This is the worst time. Once you've got a full picture of what you're dealing with you can develop a plan and start treatment. Then things will settle down. Get your support group and medical team revved up and ready to go.

  • twiggyOR
    twiggyOR Member Posts: 246
    edited December 2018

    Jaylea, due to a persistent cough I had a chest CT which showed multiple enlarged lymph nodes in my chest. Previously I was stage 2. The report reads "highly suggestive of metastatic disease". The biopsy is pretty much to get the pathology to determine treatment options. 😞

  • novagirl
    novagirl Member Posts: 82
    edited December 2018

    Jaylea, thank you for explaining about lung biopsy. That makes me feel better about not getting one. I’m so sorry you had a collapsed lung and a hospital stay. What a nightmare. Thanks for the encouragement.

    Iwrite, your granddaughter is adorable!

    TwiggyOR I’m do sorry you are in the waiting game. The waiting is hell. I hope you you get the best news possible. My MO said the lung Mets we could knock out (even though report says there are too many to count) but that my bone Mets will always be there. They will hopefully stop progressing and be stable. I left on Friday not that worried about the lung Mets. Then I read my report and got the internet and was overwhelmed. I will say from this site many women tend to be doing well with lung Mets.

    This is so surreal. I’m 5 years out and my husband and I were talking with a fertility specialists in November to try for a second child. Then weeks later THIS. I’m so worried because my Skelton gets worse every day. It makes me think the cancer is spreading so quickly. I know I’ll feel bettter after I start treatment.



  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    Greetings,

    I have not visited this thread until recently...having serial increase over 3 CTs of a small lung nodule. I suspect this means progression on Ibrance/Faslodex (just started cycle 13).

    Has anyone had a small lung lesion that grew while on Ibrance/Faslodex?

    My MO has been quite apathetic to my situation and made me wait quite long to declare anything. As I posted in other threads, I was told he is on indefinite leave. I searched online and found his mugshot. He attempted to strangle his estranged wife and threatened to shove a butcher knife down her throat...needless to say, I will probably never see him again. I will see the substitute MO at my next appt, next Monday.

    I am of course very concerned and even scared of progression on Ibrance. As it seems to be the greatest, latest wonder-drug in the toolkit, it is scary to think about what will come next...and even more scared to start with a new MO with no experience...

    Happy New Year to All (if at all possible),

    Gundoctor

  • Jaylea
    Jaylea Member Posts: 440
    edited January 2019

    Hi Gumdoctor, I'm so sorry that you're facing possible progression. A couple of thoughts. My lung nodules haven't increased on Ibrance, but some of my bone mets have. Some lymph and bone mets have shrunk. A couple of spots on my liver are too small to characterize, so we're just watching them. All that said, my MO keeps my on Ibrance. She's satisfied enough that it's keeping things mostly at bay. If there was a significant increase in size, we'd probably be talking about the next line of treatment. But, as she says, while there are treatment breakthroughs all the time, there aren't an unlimited number of treatments, so she errs on conservative before going to the next arrow in the quiver.

    I have faith that your new MO will be informed and caring. There are a number of other options available, Xeloda being one. Sending you positive energy.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    thank you for your encouragement Jaylea!

    I will know more day after tomorrow. CT w/ contrast in the morning, in the afternoon labs, meet with substitute MO then Faslodex injection. My previous MO was arrested for attempting to strangle his estranged wife and threatened to shove a butcher knife down her throat. Pretty sure I will not be seeing him again.

    As much as I sensed apathy from him, I get it now. He has been dealing with this ever since I started with him. 4 young kids, wife addicted to heroine, wife went to prison, wife paroled. I suspect he was protecting the kids from her when this incident happened. I feel sorry for him and the family and the whole situation. Separate from them, now his many patients have to pick up the pieces and carry on.

    I may be heading for a 2nd opinion with MD Anderson as I am now very unsure of the quality of care I have received in light of this new information.

    I pray to God to give me (and all of us) the strength to carry on and to accept what lies ahead.

    Gumdoctor

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited January 2019

    Just an update: CT with contrast did NOT show lung progression.

    Met with new MO. Like her. Alot. She listened. In order to evaluate some issues not addressed by previous MO, I have two spine MRIs next week.

    I feel great relief and some peace. Finally. I cannot measure the amount of stress I have experienced from previous MO's apathy for the past 13 months and even more than that, leading up to stage 4 dx. Praise God I do not have to deal with that apathy anymore.

    Gumdoctor

  • novagirl
    novagirl Member Posts: 82
    edited January 2019

    Gumdoctor,

    I’m so happy your new MO is listening to you and taking action. Great news about CT and lungs


  • Live
    Live Member Posts: 6
    edited December 2020

    Hi Pat, I was recently dx with mets to plural effusion. I was wondering how long it took to get the fluid under control? I had a plurax put in a few weeks ago. I've been having thoros since the end of October. I've been on Letrozole for a month and a half and just started Ibrance 2 weeks ago. I don't know of anyone else that has had such problems with a buildup of plural fluid. I'm impatiently waiting to feel better. You can pm me if you want. thank you

    Robin

  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited January 2019

    Live, I had pleural effusion at diagnosis last Jan with thoros, pleuradecis, all that. Was on oxygen 24/7. After my 12 weeks of taxol I started Ibrance and letrozole at the end of March. By the end of May I was able to go several hours a day w/o oxygen and extended that time until I didn't need it at all by mid-summer. I didn't need a thoro after I started Ibrance. The fluid I did have gradually went away. I hope it works quickly for you.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited January 2019

    Hi Robin,

    I was diagnosed stage IV due to the pleural effusion which quickly got quite large. I had the PleurX put in in January of 2017 after having thoracentesis done twice with a quick return of the fluid. I had the PleurX for about 5 months and didn't find that there was much reduction in fluid from one week to the next while on an AI and Ibrance but then the lung suddenly dried up, virtually overnight. Part of the problem for me was that I was very sensitive to the draining. If the nurses drained too much my lung would be very irritated which I think caused more fluid production. Everyone is quite individual in terms of how long it takes. My body LOVES to make fluid! (I had a similar issue at original diagnosis. I didn't think I would ever stop draining from the lymph node surgery!)

    Hopefully Ibrance will do its stuff soon. It does take a couple of cycles.

    Feel free to PM me if you have more questions.

    Pat

  • Live
    Live Member Posts: 6
    edited December 2020

    Thanks Pat and Muddling,

    I'm looking forward to getting these effusions under control and taking back my life. It’s been a shock, after 7 years I thought I was good. My Onc is very positive thankfully. Right now it's only in my plural fluid and just cells, so strange... I hope this treatment works for me, fingers crossed 🤞 The very best to you and everyone here. xo

    Robin

  • Jaylea
    Jaylea Member Posts: 440
    edited January 2019

    Robin, adding to the welcome and so sorry that you're here. I was 10 years past my original dx and truly thought I could check cancer recurrence off my worry list. But there are many new options and you're on one of them. I hope the treatment works well for you for years.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited January 2019

    And I was almost 16 years. I had a friend that always spoke of it as the sword of Damocles.... Thankfully, as Jaylea notes, we have a lot of options at our disposal.

  • Live
    Live Member Posts: 6
    edited December 2020

    Hi Jaylea,

    Thanks for the welcome. I am thankful for the new treatments and hope for many years for all of us. xo

  • susaninsf
    susaninsf Member Posts: 1,099
    edited January 2019

    Sadieservant,

    Love that reference to the sword of Damocles! So perfect!

    Hugs, Susan

  • Jaylea
    Jaylea Member Posts: 440
    edited January 2019

    Susan, good to see you. How are you doing on the Alpelisib trial? I hope you're tolerating it well while it does its good work.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited January 2019

    Jaylea,

    So sweet of you to ask! I'm doing great on the Alpelisib trial. Only minor and temporary side effects. Went on a Keto diet because the drug was causing my blood sugar to rise but the diet seemed to get it back down. Just started my sixth 28-day cycle. First scan showed 40%+ reduction of my tumors. Second scan was stable. Will have my third scan on 1/31. Hoping to be able to stay on it for a long time since both Letrozole and Alpelisib are oral medications. Oxygen saturation has been 100% since I started the trial. No more coughing.

    How are you doing?

    Hugs, Susan

  • Jaylea
    Jaylea Member Posts: 440
    edited January 2019

    Oh Susan, hearing that makes me a hap-hap-happy girl. No more coughing? Sounds like heaven. When I go into a coughing fit at night I try coughing into the pillow so I don't disturb DH. He's ok losing the sleep, but it just gets him worried. I'm struggling with some serious GI issues, can't keep food down and have lost 14 lbs. Docs are baffled. But I'm getting a brain MRI on Friday to rule out a tumor pressing on the nerve that governs the stomach.

    Good luck with keto. It definitely helps with blood sugar. I've read it may prime the body to better metabolize chemo, too.

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