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mets to lung

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Comments

  • Jaylea
    Jaylea Member Posts: 440
    edited June 2018

    Fabulous news, doing the hand jive for you, Grannax! I'm particularly interested in the y90 results. Keeping that in the quiver if/when my liver is involved. Somehow I'm thinking you're on 100mg Ibrance. I'm on 125mg but going down to 75mg for at least two months to get my bloodwork up. Wishing you and all our lung metsters containment and improvement.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited June 2018

    Jaylea. Actually, I've been on 125 the whole time. I've never had to delay for low ANC. I'm pretty amazed by that, too. I've had to take several breaks, one while I had cellulitis on my face, one for the flu and I got to be off one month when I went to Hawaii. I even stayed on Ibrance the whole time during my two y90's.

    There is a thread local treatment where I described my experience with y90. I think there are about ten of us who have had y90. One other is further out than I am, Shetland Pony is 3 years I think.

    I'm not sure I know how to do the hand jive but I can do the happy dance for us. Haha

  • Lnf
    Lnf Member Posts: 19
    edited July 2018

    Hello eveyone, its been a while since I've checked in. Hope everyone is doing well. I went into the hospital for two days to have a lung resection biopsy because my ct scan showed mix results. The ibrance and letrozole were not working on the nodes in my lungs. The lab in trying to determine the type of cancer in my lungs ran a test for neuro endocrine cells. The results were positive. They determined that the cancer in my lungs is breast cancer and like my breast tumor is ER/PR positive her2 negative, but is also a highly neuro endocrine type. My oncologist ask the lab to pull my breast biopsy specimens from January and test them. They also came back positive for neuroendocrine. Now my doctor tells me that I have a a rare form of breast cancer. I will no longer be on letrozole and ibrance. So I'm waiting for approval on a chemo that's generally used on lung cancers and other cancers that have neural endocrine cells, Etoposide. I will also be on Cisplatin. She says after they shrink the tumors down then I will be on two maintenance drugs. I can't remember the names. It's all been a bit much for me to take in but I'm adjusting.

  • Lnf
    Lnf Member Posts: 19
    edited July 2018

    MY oncologist told me that she's going to take my case before the tumor board at my hospital for input from other oncologist. She said it would also be a learning experience for all the doctors. I did Google neuroendocrine breast cancer and find that most of the Articles say only 1% of all breast cancers are of that type. Such a lucky girl.

  • Jaylea
    Jaylea Member Posts: 440
    edited July 2018

    Lnf, with those odds you better play the lottery. I've been accused of always looking for the pony in the pile of manure, but it sounds like you've got a crack medical team looking after you. Wishing you all positive results. Please check in and let us know what's next.

  • Lnf
    Lnf Member Posts: 19
    edited July 2018

    My oncologists scheduled a hearing test, bone and ct scans on Thursday. Got the result back on Friday. No suprises with the ct scan because we already knew the nodes in the lungs were increasing. The bone scan show in 6 months i went from nothing to mets in scapula, femur, upper spine, and ten spots on the skull. My hearing test came back with ringing in the ears and Mild to moderate hearing loss. Which was no surprise to me. So I had a phone conversation with Dr. She said she is going to change up the chemo. Because of my hearing she changing the crisplatin to Carboplatin and instead of v-16 to taxo. She said 3 cycles then a ct scan and if it's working 3 more cycles. After that hormone inhibitors for maintenance.

  • Jaylea
    Jaylea Member Posts: 440
    edited July 2018

    Lnf, so sorry to hear of your progression. Hope you're being extra kind to yourself and calling in the troops for support. I just visited with a favorite nephew and gave him a watch from my dad (his grandpa). It was an amazing moment that reminded me of the importance of connection, whether it's family or friends. Praying that this combo serves you well for months and years.

  • singlemom1
    singlemom1 Member Posts: 260
    edited July 2018

    Lnf- I am sorry to hear of your progression. You must be pretty overwhelmed right now but it does seem like your doctor is very on top of things. I hope you have a lot of support and that things will stabilize quickly. Please let us know how you are doing.

  • bright55
    bright55 Member Posts: 147
    edited July 2018

    hi everyone its awhile since i posted. Have just had 6 month ct and 10 month bone scan stil stable after 2 years on letrozole..no new sites

    Minor side effects with summer heat and foot pain all good fitness wise

    Wishing you all good stable results for treatment

    Bright in hope


  • wam
    wam Member Posts: 98
    edited July 2018

    hAs anyone heard from Cive?

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

    Hi Fraidycat,

    Cive has not been on the site since early January. Unfortunately, I suspect the worst as she just suddenly disappeared. I sent her a PM but never received a response. I am quite sad about it. We communicated quite a bit but I don't have any information on her other than her first name (Judi) so didn't have any idea how to check on her.

    As I said, it was all very sudden. I don't think the MBC was giving her a lot of trouble but believe she had some other health concerns. She had been sick with the flu for a couple of weeks prior but was getting over it (I thought).

    Pat

  • Jaylea
    Jaylea Member Posts: 440
    edited July 2018

    Bright, thanks for sharing your good news! Wonderful that your treatment is doing you well with minimal SE's.

    Pat, thanks for the update on what you know of Cive. I have told my hubby that he will need to log on here and update everyone when I can no longer do it.

  • bright55
    bright55 Member Posts: 147
    edited July 2018

    hi jaylea this thread used to be very quiet but looks like more activity this year good to read progress and therapy options.I live in Australia and our bcna post groups do not actively discuss therapies so i have learnt a lot.

    Thanks you for comment all best for your treatment

    Bright in hope

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

    Just got my scan results and there was more progression in my lungs.

    1. Increased size and number of nodules throughout the right pleural space consistent with metastatic disease

    2. Increased right pleural effusion

    I have had slightly worse trouble breathing and small amount of coughing but nothing too bad.

    Have been on Ibrance + Faslodex. My MO wants me to try a trial for Alpelisib but she said I would not be able to change from Faslodex to Letrozole because the trial specified as Alpelisib + Faslodex.

    Anyone progress on Ibrance + Faslodex? What was your next treatment?

    Hugs, Susan

  • Beatmon
    Beatmon Member Posts: 617
    edited July 2018

    Susan, I’m so sorry to read your post that you have had progression

  • faith-840
    faith-840 Member Posts: 926
    edited July 2018

    Susan, I'm sorry I can't help but I'm so sorry to hear of your progression. I will keep you in my prayers.

    Faith (in the future)

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

    Thanks Faith and Beatmom! I think I may also have some new bone mets to my rib near where the lung tumors are located. The bone scan showed some intensity there but they weren't sure. I've been having some pain and discomfort there but thought it was a muscle thing.

    Anyone try going directly to a Lung Onc for a second opinion? My MO was very dismissive when I asked for a referral to a lung specialist but they may have some other techniques the BC Oncs don't know about. Been looking at MWA (Microwave Ablation) where they insert a needle into your tumor and heat it up with microwaves. Has anyone tried that?

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

    Hi Susan,

    I'm sorry to hear about your progression. I had severe pleural effusion when I was first diagnosed and know how troublesome it can be. I hope the SOB is not too severe. If yes, push for a thoracentesis as it really makes a huge difference.

    I am interested in your comment about the pain and discomfort in your ribs. I was having discomfort late last year but it eased when I switched to Faslodex. Unfortunately the relief only lasted a few months and now it's worse than ever which, combined with increased hip pain, makes me think that I am progressing as well. I don't have a solid tumor in my chest - I have pleural and bone mets, making it a bit tricky to monitor. They've trying to assess the thickness of the pleura. Given the discomfort (which definitely feels like a muscle thing at times) I wondered if there could be increased mets on my ribs but they did not flag anything on the CT from a month (however, primary purpose of that CT was to assess probable pneumonia). Bone scans seem to be a complete waste of time for me with my sclerotic mets.

    I don't really have a question for you but it was helpful as what you described seems very similar. Helps me to know that I'm not crazy!

    Hugs. Pat

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

    Thanks Pat! I have a Sheltie too! His name is Buddy. He's a big boy, 29 lbs. Here's a picture of him:

    image

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

    Mine is a rough collie. Bossy and opinionated but I adore her.

  • RebkkaJ
    RebkkaJ Member Posts: 3
    edited July 2018

    Hi Everyone,

    I was DX with Stage IV lung mets both lungs, 2 spots in the brain & positive in the right lymphatic system Mar 1, 2017. ER-,PR+, HER2-

    Not sure how to post all my treatments like you do in your profile new to the forums but I will hopefully get it figured out along with the etiquette!

    I started on Abraxane and it was able to keep things at bay for 6 months. When I scanned the cancer had grown Aug 2017. I loved Abraxane I had little side effects and continued to work. Then we switched to Navelbine. It was not too bad I did it every two weeks. I had to take the pro Crit shots weekly my blood counts tanked. I was a little nauseous but controlled it with Zofran and promethazine cream.(love that stuff!) I wasn't on Navelbine very long at my 3mo scan we grew so in Nov we started Adrymiacin. I believe they called it Red Devil. I did a dose dense version every 2 was. This was harder. I went out on STD at work. My doc changed chemos to Doxurubicin Liposomes at 3mos due to toxicity. I finally went LTD at work because it's been going on 18 months now. Things aren't getting easier.

    I have been so lucky until two weeks ago when he changed me to Ixempra. It's been side effect hell for me. Headaches, nauseous, muscle/bone aches, diarrhea & total exhaustion. Oh and some fun mouth and throat sores! If I eat anything my stomach feels like it's on fire within 15-20min. I cut out anything acidic, spicy or salty! Any advice on what you have experienced to curb some of these would be so greatly appreciated! They did give me a mouthwash to swish & swallow for the sores etc. They recommended Imodium AD. Im going on day 10 I thought surely things would change. This just caught me by surprise! I thought I was tough but this chemo seems to knock me in the dirt!

    Just a quick background- I'm 48, have 3 sons, married 25yrs this Dec. use to work in the Oil/Gas industry for the last 20yrs. I was Dx with Stage III back in May 2014. Did chemo, full mast., reconstruction was in remission 2yrs 2mos before the Stage IV last Mar. I try hard to stay positive and fight like hell to keep this at bay! Some days just suck but I have many more good than bad.

    I'm glad I found sisters And brothers fighting who understand the battle. I pray for a cure For each of us! It's been great reading everyone's posts.

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

    Pat, Rough collie! Beautiful!

    RebkkaJ, What is your oncotype? ER positive? HER2 negative?

  • Lynne
    Lynne Member Posts: 368
    edited July 2018

    Hi RebkkaJ,

    So sorry your are going through all those side effects. I have to switch treatments too, after a year on Taxotere (maybe I'll get my hair,eyebrows, and lashes back!). I have 2 new nodules in my lungs, and an old one grew 6 mm in 2 months (the liver and bone mets were ok). I was actually given the option of Ixempra or Gemzar for the next one. I'm getting a second opinion in Boston at Dana Farber on Thursday. The oncologist there specializes in breast oncology. My local one is a general oncologist. Whenever I have to change treatments, I always get a second opinion from Boston. Only once did they have a difference of opinions, the past 6 years. My local oncologist said the Ixempra had a lot of side effects (It sounds just awful!). I was looking at that one first, since it is only once a month, but it sounds awful. Gemzar is once a week for 3 weeks, then a week off. Of course in August, if I choose that, makes it hard, because we have something going on just about every weekend, and they set me up for Fridays (except for the wedding weekend away, when we are leaving on Fri). I just hope if I choose Gemzar there are little side effects. I don't want to feel bad at the wedding, or on our 10 days away at the lake, the end of the month. I am so sick of Cancer messing up my life!

    Up at the top of the page. It says "My profile". Click on that, and you can put everything on from there. Also, on the left top, tells you your favorite pages, once you add it at the top of this page, and it will have a number next to it, and you can click on it. I have 4 or 5 different pages there. Lots of helpful links there. You'll get the hang of it!

    Hope you feel better soon! Hugs!

    Lynne





  • Jaylea
    Jaylea Member Posts: 440
    edited July 2018

    Susan, hi from a fellow bay arean. When I had an early scare of progression to liver, my next option would have been taxol. So sorry you're dealing with progression but hope you get your treatment buttoned down soon. I've not read anything about lung oncs. You're definitely breaking ground with options, and I will be very interested to hear how you're doing.

    Rebbka, I'm not familiar with Ixempra either. You've really had a rough patch. Praying you get onto something that's effective with minimal SE's.

    Lynne, sending prayers your way, too. This stupid disease makes me feel helpless, but not hopeless.

    Wishing you all an easy weekend.

  • Jaylea
    Jaylea Member Posts: 440
    edited October 2018

    Hi there, lungsters, thought I'd fire this thread back up and see if we can get updates from all y'all.

    My last scans in August came back stable, but I have my doubts. Beginning in July I've been having lung pain, cough and SOB, along with some other issues. MO doesn't see any direct cause, but we're trying several remedies, including a month break from Ibrance and inhalers. The steroid inhaler about killed me, but the rescue inhaler seems to thin the cough a bit. Was just wondering if anyone had a similar story, i.e. scans show stable while SE's worsen. Maybe a slow downgrade is to be expected with 15 months of treatment?

    Sending hugs to all.

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

    Hi Jaylea,

    Your story has been a constant for me. After early progression I continue to have changing or worsening symptoms while the CT and bone scans come back as stable. Things improved briefly when I shifted to Faslodex in January but then I had increasing hip pain which required radiation. Now my lumbar spine is giving me grief and I have a persistent pain on my right flank and under my right ribs. My right chest seems tight and irritated. A bit of a cough but not much. So far no SOB.

    I find it so frustrating as it makes me feel like I’m neurotic. I sure don’t want to wish progression on myself but when scans come back as stable it doesn’t help me to understand what to do to fix it. My recent bone scan a week ago again showed stable (although I don’t give this a lot of weight - bone scans always underestimate the amount of cancer) and my tumour markers, which are completely useless for me, came back in the normal range. Just waiting for the results of a CT and then we will see.

    Hope they get to the bottom of things for you.

    Pat.

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

    Have been on the BYLieve trial for Alpelisib for the last two months. Just had my first scans since starting the trial and it showed a 40% reduction in my lung tumors! My newest lung tumor completely disappeared! Had mouth sores on and off but no other side effects besides fatigue. Who knows where the fatigue is coming from anyway. If you are ER+/HER2- and have the PI3K CA mutation, you should look into this trial.

    Hugs, Susan

  • Jaylea
    Jaylea Member Posts: 440
    edited October 2018

    Susan, that's fantastic news. An effective treatment with minimal SE's - hazzah!

    Pat, thanks for validating my situation. I like to think I'm a tough cookie, but this darn disease has sneaky ways to lay me low. As you said, it's hard to resolve when you don't know the source.

    I do get a little relief from the lung ache by laying on a heating pad when I'm propped up in bed. Small blessings...

  • Beatmon
    Beatmon Member Posts: 617
    edited October 2018

    Susann thst is a great report! So happy the trial is having such solid results.

    I haven’t had any growth in the remaining sleeping spots in my lungs, so I also do not understand why I feel a little worse everyday...

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

    Here's a link to Hope Rugo's summary of breakthrough trial results presented at ESMO 2018. She talks about the SOLAR-1 Phase II trial of Alpelisib.

    https://www.youtube.com/watch?v=4-oo3LoCqcU

    You can also watch the actual presentation at ESMO by the primary researcher, Fabrice Andre, here:

    https://www.youtube.com/watch?v=nmFrevulKTo

    Very exciting results!!!

    Hugs, Susan

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