Mets to lung
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I had my lung biopsy today. It was the 2nd lung biopsy for me. The first was in March and we got not useful info from it as it was all necrotic. It had been shrinking since then but started growing rapidly between the Aug and October scans.
I'm sore from today's biopsy. Hope the pain goes away soon.I'm meeting with the RO next Monday to finalize admission to a clinical trial. I will hopefully be getting rads or SABR (depending on the randomization) to the lung lesion the following week.
hugs everyone
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MOTH
Sorry you are sore. Hopefully you recover quickly for the holidays ahead. Congrats on the trial. Let us know
FYI- I met with my RO this week. She said my lung lesions are stable since July and no new lesions. The SBRT lesion did not show any differently, but she said the 6 month scan should tell more. She actually dismissed me unless the lesions start to grow and we can do SBRT again if I want. She said that I have enough doctors to see with everything going on and as far as she is concerned I don’t need an extra one. (But she is always there for me when I do)
Dee
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Moth - I hope you heal quickly and everything falls in place. The trial sounds promising!
Dee - Stable is good! What doctor performed your SBRT? I've been turned down by my Oncologist to get a lung biopsy or a referral. I made an appointment about a year ago with a lung specialist for possible SBRT for my lungs within the same cancer center but she contacted the specialist and said I did not need an appointment. I will have to be either more demanding next time I ask or plan to travel for an appointment.
~Kar
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KarPC
I went to my local Radiation Oncologist with a referral that I demanded from my then MO (got a new one now).
At that time the only thing to light up on my PET scan was One small lung lesion so I was considered oligometastatic in the lung with previously treated disease in the liver.
My RO was all for SBRT to reduce tumor burden.
Maybe you could show your MO the article https://ascopubs.org/doi/10.1200/JCO.20.00818
Dee0 -
Thank you for the information Dee! Good for you in demanding what you want. We have to do that! ~Kar
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Dee, the principal investigator for my trial is one of the authors of that paper. My RO did a fellowship on SABR. I don't need to sell them on it but I think the problem is that it's still considered experimental and the province won't let them do it outside a trial.
I will ask again - esp since I just found out that someone in Ontario had it done for a lung oligoprogression
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Good Luck MOTH. I forgot you were in Canada and the rules are a bit different.
Dee
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Hi everyone,
I am back after some treatments. Had some hectic therapies both with my onco and some alternative supplementary treatments.
Things are not doing so well for me. From the last discovery of the spots in my lungs (nodes discovered at the mediastenal just like tangandchris) . I was administered with
Carboplatin + Herceptin x 6 cycles (every 2 weeks). A petscan was done after 4 weeks and the tumor had grown and the onco highlighted that the lungs are badly inflammed (the onco linked the inflammation to RT and chemo i had done). My breathing was getting worst, i was not able to walk even 30 meters without getting severe breathlessness. The onco had then asked me to take a break from chemo for 6 weeks and placed me on steroids to tteat my inflammation.
On by some weird turn of event, during the second week of my chemo holiday, i met another oncologist in another hospital to sign up for a clinical trial on Hyperthermia treatment. The onco looked at my scan records and had immediately raised the red flag to say that i am not suffering from lungs inflammation but rather its lymphengitis carcinoma - the cancer had invaded my lungs and if not attended to, it will be total organ failure within weeks. I am now instantly signed up for a new chemo treatment tomorrow at a different hospital. Since my bone marrow result is not so good, i will be doing a weekly chemo cocktail of Abraxane, Avastin and Tycerb.
This oncologist is a reputable doctor and he was very concerned and unhappy that my own oncologist did not see the lymphengitis. He said i have a 50-50 chance of managing the lungs from total failure.
Well, i am preparing for my session tomorrow.
I do hope i could get some thoughts or comments from any of you.
Hoping this treatment will be helping me.
Love to everyone!! Take care!!
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Miza,
I do not have lung mets (so far as I know right now) but I just had to comment on your story. WTH? Did the radiology reports with the first MO say anything about this? Does your MO look at the actual scans? Mine does not as far as I know -- she simply goes by the report submitted by the radiologist.
It sounds like you've switched to treatment by the new MO, which I hope is the case. But I would let your old MO know, if you have the energy, because that was a HUGE mess-up.
Good luck on your new treatment, and hoping that it works wonders for you.
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Miza, hope you're well and the new chemo is working well for you.
My lung met which was necrotic in March 2020 and came back to life in Oct 2020 is currently being radiated (just started rads today)
I also had it biopsied. Some tissue has gone to Foundation for testing and the pathologist here also looked at it. It came back as slightly ER+ so we are adding letrozole to my treatment.
I hope it helps me in some way
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MOTH
Hoping the rads go well. ER+ gives you more Tx to put in your bucket
Dee.
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Hi, just checking in. I've got 4 more radiation treatments to go, all interrupted by holidays. I get 3 next week & then 1 more on Jan 4.
I hope all these breaks don't diminish the efficacy. This tumor is apparently super aggressive. Went from nothing to biggish in 8 weeks from Aug-Oct, and then grew some more in the 5 weeks between the Oct scan and the CT mapping for treatment. My RO today warned me that my Jan scans were going to show a larger mass because it takes time for radiated tumors to start showing shrinkage so I need to ignore the lung met on the Jan scans and not freak out. Glad he warned me. I'm coughing like crazy, even at night, keeping myself and my poor dh awake. Even the dog is giving me stinkeye for waking her up with my coughing fits lol.I've started the letrozole and since it is 3/8 ER+ maybe it will help shrink that lung met too.
Happy Holidays everyone
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moth, I had to chuckle at the "dog stink-eye". I totally get it. When I was so sick with pneumonia last year, I slept on the couch or finally up in the attic, because my coughing was so bad it was waking up the dog as well as my DH. We kind of wonder if I had COVID back then, but the lung thing (along with total exhaustion) was my only real symptom. My DH tells me that he thought I was going to die. Glad I didn't...
Hope you start to feel better and the rest of your rads are successful.
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Moth
Thanks for pointing this thread out to me Atm I am just floundering around trying to make sense of it all and of course there is no answer I get my treatment plan on Wednesday to see how they will treat these mets If it involves chemo again do I need to get that coronavirus jab? Any input on that helpful if anyone knows
Where I live in Athens Greece we are under total lockdown till 11/1 so they say. They keep extending it and we have a 6 pm curfew This is to try to get schools opened which everyone wants.
If there is anyone out there in my part of the worl I would love to here from you
Health & peace
Anna
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Hi Anna, glad you made it over here! It's not the busiest stage IV thread (I think Mel's living room is) but we're here for each other.
Have you had the lung met biopsied? How big is it and still the same hormone markers?
In BC we're still waiting for news about the mRNA vaccine for cancer patients. I think there's no safety data yet for people who are immunocompromised. I think ideally I'd wait for the non mRNA vax (esp since I've been on immunotherapy) but I'll see what my MO says.
I hope you get a concrete plan on Wednesday. If you're strongly hormone positive, I think often first line is often an AI & possibly Ibrance but I'm not as up on ER+. I'm more up on TN tx (though my lung met came back 3/8 ER+/PR- so I started letrozole in Dec 20 in case at least part of my cancer responds to hormone blocks)
hugs
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Thanks Moth for your reply
My path report says it’s Er& Pr positive and Her negative. It was the same the last time Will see what gets thrown at me on Wednesday and when it starts etc etc
I read your blog with interest.Super pics
Stay well
Hug
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Hi everyone
Hope you are all doing well
This tumor is situated in the fight upper lobe area but not in lung in the mediastinum. It’s next to the big vessels so inoperable and not a good position for cyberknife so I’m told but may be considered further down the line.It’s er & or + her-
Rx Ibrance and Falsodex Any input on treatment welcome
Best wishes to all
Anna
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hi all
New year greetings everyone for continued good health and stable status
I have mets to lungs for five years with only slight changes to pleural nodules which ment a change in hormonal therapy
Finally after five years of not being approved, the Australian gov drug approval for second line targeted therapy has ment that I could start the targeted Kisquali/ribociclib(no cost )with Faslodex ( payAU $2100 for three cycles..then free)
now after four months recent Ct shows stable and no evidence of progression to other sites
All the best
Bright in hope
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Bright55- fantastic news! Thanks for sharing.
Dee
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morning. I apologize for posting here but I'm hoping for few quick responses. A friend and coworker just received her DX IDC, node neg, but positive lung nodules. She reached out to me for support. Why am I frozen in my responses to her? I guess because this is unchartered territory for me and I'm afraid of saying the wrong thing, offering wrong advice but I want to be supportive. Please let me know if there are any specifics she should ask in her appt today. Of course her husband is going with her but with covid her sister nurse cannot go with her which would definitely help. She is meeting with oncologist today and second opinion at Ohio state next week. Appreciate any words of hope I can send her way. When she is ready I will suggest she join here. Thank you all.
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DebAl
Are the lung nodules confirmed mets? If not she'll need a biopsy
Are.the lung mets localised to an area or all over the lung field?
Can she get referral to RO for sabr or traditional rads. How many nodules are there and can she be potentially treated as oligometastatic
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hi moth, thanks for replying. Confirmed mets. Not sure if they are localized. There are 2. I don't want to hijack this thread so may PM you once or twice should she ask me something I can't answer. Shes seeing MO now. Hope you are doing well
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Bright - Wonderful news and amazing how you've kept your Lung nodules stable for so long! ~Kar
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I have a question about lung nodules.
I have been told that I have numerous nodules in my lower left lobe mostly. My treatment consists of Kisqali and Faslodex.
Can these nodules cause back rib cage pain? Wheezing? If symptoms become an issue is there more targeted treatment?
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tangandchris,
I'm new here (again) and I just started treatment for lung mets. My nodules are lower right lung. I can confirm that my symptoms included lower back pain, wheezing and rib pain. I also had/have a pleural effusion on the right caused by the nodules so I also had radiating shoulder pain, but since I started Abraxane the back pain and shoulder pain subsided. I'm only 3 treatments into chemo right now and this is my off week. (3 on, 1 off) Still wheezing a bit, some days more and some days less and I still have achy ribs on the right side.
I don't know about targeted treatment, but I get relief from aerobic exercise, like running or dancing. Anything to increase or deepen respiration for me helps a lot. A thoracic surgeon, after a thoracentesis, said: "deep breaths help healing" so I have taken that to heart. My health app on my android phone has timed breathing/relaxation exercises and I use them daily.
Today is a rough day on the breathing spectrum for me, but it's better than it was three weeks ago and worse than it was last week. I have rales (crackles) on the right side that are annoying and last week I had some shortness of breath occasionally but no rales which is a huge improvement from where I started. It feels like three steps forward and one step back, so I'll take it!
I wish you good luck,
GR4C1E
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tangandchris - so my no med specialist answer to both questions is no. I don't think it should be causing wheezing. Wheezing is usually an upper respiratory tract symptom, and not associated with anything happening low down... low down occlusions tend to cause shortness of breath. I also don't see why you should have rib pain unless you're coughing. I coughed a lot when my met was acting up and during rads treatment and I had an incredible sore chest but we think it was literally muscle ache. I would report both of these symptoms to your MO.
I had radiation to my met in Dec (still too early to tell if it worked). So yes, in some cases localized treatments such as traditional radiation or SABR might be used for a lung lesion. You would need a consult with radiation oncology to see if it's an option.
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Thanks for both responses. I have an appointment in early March so I will discuss this too. I'm not really coughing, but the wheezing is enough that DH can hear me.
I haven't been told much about the nodules. They are there, but I have other metastatic areas too. I assume unless I'm having direct symptoms of lung issues we leave it alone.
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tangandchris,
My left sided, upper and lower lobe, tumors did cause me to have back pain. Wheezing is caused by reduction of the bronchioles and other airways throughout the lungs. If your lesions at pressing against your bronchioles or other airways within the lungs or will cause Wheezing. Sorry I know there are yeshiva terms for the airways within the lungs but chemo brain isn't letting me think of them.
Best of luck!!🥊🥊
Katie💗
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Hi Everyone
, We have two active Lung Mets threads. Unfortunately we don't have the technical capability to merge them.
We'd like to suggest that we either lock this one, and refer everyone over to the other thread (mets to lung), as it already has 70 pages. If we do this, we Mods could copy and paste the last 10 posts (as an example) as a post over to the other one, or you could copy and paste your last message over to the other thread.
Or, we could keep both open.
We'll go with what you all want who are active here.
Thanks!
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I'd say lock this one and keep everyone on the longer one 😊
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