Mets to lung
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Miza,
I am Tp53 positive, not sure if it's the same. My treatment is Tecentriq and Abraxane and as of my July scans I'm NED.
I hope everyone is doing good!
~Katie💗
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Hi Moth,
Excellent on 10,000 steps!! I am doing morning walks on weekdays and longer walks on weekends... although challenging, over time, it seems to help with the breathing. Hope you will feel good by keeping active.
I was previously on Herceptin and Perjeta. Once it metastasized, I was on Kadcyla for almost a year. With the new findings, the onco is administering Herceptin and Gemzar now.The onco had also mentioned a clinical trial early next year, I will wait for more info and share once I have them.
Hi iPenelope,
That is very useful info, I will find out more about Tecentriq and Abraxane. Hope it will help me as it does for you.
Very grateful for your sharing.
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hi everyone, last time I had let scan they found a spot in lung and nodes that lit up. But onc is waiting for new scan to see if he will change what I am taking. I’m on ibrance.
I have phlegm always stuck in my throat. And every couple of days spitting out hard green phlegm. Could this be related to the lung activity?? The phlegm is not like when I have a cold.
Tia D
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Tia D, I'm not sure about your phelm issue. It doesn't necessarily sound like it would be related to your lungs, but I'm not a doctor. It sounds more like an esophagus issue. Have you mentioned this to your onc? To me if it was lung related your breathing would be more affected by it.
Best of luck!!
Katie 💗
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I have a question for the lung mets ladies or gentleman out there. I am now on Xeloda because Ibrance/Falsodex failed after 8 months. I will not know this is working for about a month with scans. I have a small plueral effusion that does not cause me any discomfort. I was doing some research and I was stunned to learn that with plueral effusion survival times are 3-12 months??? When I read that on a PUB med study which was done in 2018 I was so shocked because I am sure I have read on these posts that people have lived years. I just hope the Xeloda works and gets rid of the effusion. Thank you in advance, and because I do not see many people on these boards with lung mets I will post this question or reassurance plea on several different topic areas.
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Karen, has your MO given you any info about change in prognosis since the pleural effusion? I think I just read the study you read and it does say *median* so that's something ... means 50% live longer. Yours sounds small and stable so I'd think you're on the positive end.
Do you have a solid lung met as well?
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Karen - I agree with Moth that you are on the positive end. Even if the study is newer, the the data is still old. There are more tests and treatment options available now. I just finished 8 months on Xeloda. I was diagnosed with multiple small lung nodules and a liver met (grade 3) in the beginning of 2018. Xeloda reduced all my tumors for 8 months before I had a slight progression. I liked Xeloda much better than Ibrance, so don't feel discouraged about the change. We have many more drug options to try in the future and there are more coming out. ~Kari
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moth- I have pleural nodes, not sure if there is any in the lung, they just said pleural Mets.My ONC is not a great communicator and He doesn’t want me To ask many questions. Unfortunately he is the best we have here
KarPC- thanks fort the Info. I also think Xeloda is easier than Ibrance was. I just don't know if it is working. Scans November my TM;s were still up last check after 3 cycles, I go back on 28 Oct, I really wish I had an ONC that would listen to my concerns
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Karen,
I had a small pleural effusion after wedge resection of my left lung. At first it was sensitive, especially if I was active, but really just while still healing from surgery. Mine did go away. Try doing deep breathing exercises to help build up your lung capacity. It might help with that effusion out.
Best of luck!!
Katie💗
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ipenelope- I had a small one after my VATS surgery also. It was drained and then it went away, I have had progression on Ibrance back in Aug scan showed plural effusion. Been on Xeloda since. Rescan in Nov
Thanks for the tips, weird thing is I have no symptoms and even do the peloton bike everyday with out problem
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Karen, no matter where you are, I think you're entitled to copies of your medical records? At my place I don't ask the doctor about them, the actual facility handles the records and all the radiology, labwork etc and the MO's progress notes are all in there. You might want to have a quick google and search for your facility name and 'patient records' and see if something comes up about how to do it. It's important to have all the information so you can advocate for yourself. You might be a candidate for other therapy or clinical trials for example
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Karen
I had a pleural effusion that collapsed my right lung and a liter of fluid in my left lung, that’s how I found out my cancer was back. I had both drain have been fine since. I too had no lung Mets just cancer cells in pleural cavity. Please don’t worry about what you read, which I know is easier said then done! There are many women on here who have had their lungs drained more then once
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I am scheduled for a biopsy Monday morning on lymph nodes on my mediastinal area. We saw the thoracic surgeon Wednesday who confirmed he firmly believes this is recurrence. He also stated that my PET lit up a couple small spots on my lung.
I'm going to the hospital in a little bit for the required Covid test prior to my procedure.
I don't know what is coming next. I'm scared of course. I wanted to post here because it sounds like I'm joining the ranks. Ironically today is the anniversary of being officially told it's cancer the first time around.
((Hugs))
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tangandchris
Hoping your biopsy goes well. Are you getting next gen sequencing on it? I hope so as things can change from previous biopsies. Those changes can drive your treatment.
I had SBRT to a minor lung met to “whack-a-Mole”’it away. perhaps you can have a local treatment on the lung/lymph node.I don’t know your story so I can’t give much help but sending hugs!
Dee
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I'm not sure what type of screening the biopsy will cover. Shouldn't this sort of thing all be standardized?
I will ask about it beforehand the morning of.
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tangandChris
You would think it would be standard but it isn’t. There are several tests but the most common is Foundation1 or TEMPUS. Your doctor will need to order it so at the time of your biopsy the get some extra punches to send off. Please note that many insurance companies do not cover these tests as in-network. TEMPUS has a financial form that you can fill out and the test is only $100.
Hope all goes well
Dee
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tangandChris
How are you after your biopsy?
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Hi....thx for thinking of me.
Finally feeling a little back to normal. I slept for several hours when I came home and called in to work.
I was super emotional this morning when I woke up. Crying over every little thing. I want to blame the anesthesia but the magnitude of everything happening feels like it is crashing down.
Throat feels sore and hoarse but there is no pain.
We go on the 4th to go over results and next steps.
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tangandChris
MBC is an emotional rollercoaster. We all get it. Then you add in current events and it’s enough to go bonkers. Hoping for good report and good plan for you.
Dee
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tangandchris, was your biopsy an endotracheal one or did they go through your skin on the outside?
I'm glad you're recovering!
I'm back here because my 'necrotic' lung met has apparently come back to life like some zombie met, just in time for halloween. It's grown in 8 weeks, while my liver mets are continuing to respond well to systemic therapy. I'm pushing for a biopsy because I want to know why it's not responding. Last time for my lung biopsy we went through the outside but this time we might have to go endoscopically. Still waiting to hear from radiology what they think.
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The biopsy was done by EBUS, I think that's the term. Its basically endoscopic while you are asleep.
Can anyone direct me or talk about surgical treatment for lung nodules or even these lymph nodes on my mediastinal? I'm wondering if that is protocol. I'd love to get these cancer out of me!!
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tangandchris, I think maybe radiation might be a better option? I'm looking at SABR. There's a trial here but looks like it's randomized who gets SABR and I really want it so what if I end up in the control arm
? My IR got back to us and thinks he can do the biopsy through the skin like last time so the MO sent a referral.
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I posted but the internet ate it
so I'm trying again..This is the link to the SABR COMET study. They had to extend the follow up because people lived longer than expected!
https://ascopubs.org/doi/10.1200/JCO.20.00818
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I had my left lower lobe removed and part off my left upper lobe resected to remove both my lung tumors. The surgery was VATS so I have 3 smaller scars on my left side. The lypmh node were assessed during surgery.
I sadly have a lymph node by the mediastinal that is to close to the aorta and to deep that they won't be able to biopsy so I'm getting heavy chemo to hopefully shrink and prevent any new areas.
~Katie💗
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Katie that’s amazing.
FYI- my sister had her lymph node removed when they did a biopsy. They think that is what saved her from greater lung cancer metastasis. She has survived 2 lung primaries of different types, surgery, cryo, chemo and is now stable disease for 5 years in opdivo.Dee
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Hi Ladies!
I have my follow up appointment tomorrow morning with the Thoracic Surgeon. I am going to ask about rads/chemo/surgery, which one or combo? I am not going to pretend that the idea of chemo again makes me want to cry and fills me with dread. I was not one of the lucky ones that did well with chemo.
I still feel like I'm walking around in a dream state, like I'm sort of detached from my feelings to help me cope. I really try avoid taking anxiety meds during the day because I don't want to be too sleepy. But, at the same time I feel tired from the stress. Like physically exhausted, my legs feel heavy when I walk and going to Walmart is a production.
I'm trying to avoid going out as much. It did occur to me that I may need to be even more careful with Covid now that I'm dealing with this issue in my chest. What have your doctors told you about it while being in active treatment?0 -
tanganchris
I’m sorry you are dealing with the stress. Sometimes having a plan helps
I hope your surgeon is open to surgically removing the few mets if possible. It is more accepted when oligometastatic. Surgery is considered the gold standard.
Go in prepared to ask about SBRT also. That is done by an Interventional Radiologist.https://ascopubs.org/doi/10.1200/JCO.20.00818
When you get your Biopsy results and NGS you can have a better picture of what systemic medicines would be prudent to start on. It may not be chemotherapy. First line metastatic standard of care is a Targeted therapy of cdk 4/6 plus an anti estrogen. They aren’t too tough for most people. Your medical oncologist would be in charge of this
Let us know how it goes. Breathe and trust your gut.
Dee
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tangandchris, my team has told me since March to essentially self isolate at home and wear a mask to medical appointments. The only place I go is outdoor walks with my dog in an area where I don't pass close to any people. The only guests we have are my parents and we do those visits outside and more than 2m apart. Between the lung met and being on chemo, I'm considered very high risk.
There was a study which someone linked recently that cancer pts had high mortality rates from covid.
https://www.medpagetoday.com/meetingcoverage/chest...
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tangandchris - The stress of cancer and Covid is a double whammy. I feel for you and the shock of everything you must be experiencing right now. I think meeting with a surgeon is a great plan. Even if you don't have surgery right away, the knowledge will be helpful for a potential future date. I had a liver ablation, lymph node radiation and then started chemo all in the first few months of my stage 4 diagnosis. It was exhausting but the intense schedule allowed me to believe that I was doing something to kill the cancer. I did not do well with Taxotere during my early stage treatment over 4.5 years ago. I have been on a few treatments since I've developed mets almost 3 years ago, and they have all been much kinder to me. I get so terrified each time I start a new treatment, yet I've been able to stay active and work full-time through all of my stage 4 treatments. I hope your follow-up appointment goes well. ~Kar
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tangandchris- definitely see what your options are. I ended up seeing a 2nd thoracic surgeon because the first one did not have the same beliefs for treatment that followed how aggressive I wanted to be. My 2nd thoracic surgeon felt the same way I did and agreed to surgery. I had surgery right at the start of increased Covid cases in MN, if I had waited 5 days for surgery the surgery would have been deejays multiple months. I was out of work, I'm a home health nurse so going into clients home really increased my risk right after surgery and then I started chemo in April. I did go back to work at the beginning of June. I also go out and about but I always have hand sanitizer with me and I wear an N95 while working and a homemade mask with a filter and really social distance when I'm out places.
Going out and working has allowed me to keep my sanity with this, especially given my 1st line of chemo for stage 4 didn't work after 5.5 months, and my prognosis.
Do some research on options available to treat lung cancer and determine how aggressive you want your treatment to be. Stick to your beliefs and if 1 doctor doesn't fit with your desire for treatment find someone else.
I hope everyone is doing good.
~Katie💗
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