mets to lung
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This thread has not been active lately so I'm hoping there is someone out there to read my post.
I've gotten to the point that my SOB is so bad I am gasping for breath walking a flat 10 feet. Can only sleep about an hour at a time because of violent coughing. Only very small effusions in both my lungs but lots of tumors. I'm on the trial drug PY-159. It's an immuno-therapy drug given with Keytruda. Because it's an immuno-therapy drug, I can't take steroids. I have a lot of inflammation that is causing severe joint pain.
Anyone else experiencing something similar?
Hugs, Susan
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Hi Susan, I'm sorry to read your update here and on the liver mets thread. You've been so active through all your previous treatments this is startling.
Would cough medicine with codeine help suppress the cough? And could puffers (Albuterol isn't a steroid) help? For sleeping does sleeping on your stomach help? I'm sure you've tried all these things, but these are approaches I've tried over the years between effusions and allergies. But I don't have lung mets, just pleural ones. I wonder what lung cancer patients do on Keytruda - this must happen to them all the time. I hope someone chimes in with more concrete ideas.
Good luck for your CT scan. At the height of my pleural effusion last winter I had a scan and was having trouble laying down too - but I did make it through. Breath...hold your breath.....breath - and you can cough/move in between. Think of good things. And yes, I cried silently in the scanner I was feeling so bad, but I made it.
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Susan, when I had pneumonitis caused by Keytruda+Eribulin, I coughed violently and felt extremely weak. What you described surely sounded like inflammation to me. But if it’s pneumonitis, it will show on chest CT. Your last CT didn’t show any lung inflammation? Perhaps it’s the lung mets being so “irritated” by the treatment? Keeping you in my thoughts.
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Thanks figtree and newgardener,
Sadly, in this case, I am dying. My cancer has progressed dramatically and I have fluid in my heart and lungs as well as blood clots in my lungs. I will post more on the trial thread.
Hugs, Susan
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Susan, I read your updates on the trial thread. I am so sorry. I just want you to know that you have been my inspiration over the three years I’m on this board and I have learned so much from you because of your openness and generosity to share your experiences. So thank you! Thank you for being such a warm, courageous, tenacious, and kind human being. And of course I’m still hoping for miracles for you..
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Dear Susan:
Your courage and intelligence in dealing with a terrible situation is amazing. I am so sorry it has come to this. You are in my thoughts and prayers.
Eleanora
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Susan,
I have followed your posts for years, always finding inspiration in your determination and love of life. Thank you for being here and sharing your wonderful self with us.
Tina
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Susan - Along with many others, both posting & without words, your posts have helped many of us get thru scans, treatment changes & wacky side effects. Even reading the calmness in this post & the one on the Trial thread send calming vibes to me. Peace to you.
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Thanks for all of your kind words!
If anyone wants to follow my blog, you can write to my husband, csh@stanfordalumni.org to join.
Hugs, Susan
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Susan I am so sorry to hear about your update...you have been an ispiration to us all for sure.
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I wanted to post since here since Susan was a contributor in this thread, and wasn’t sure if who all had seen that her husband posted in the death and dying thread that sadly, Susan has passed away. Here is what he wrote just a short time ago:
This is Chuck Han, husband of Susan Kobayashi. I'm sorry if I am breaking etiquette by using her account, but one of her wishes was to notify the breastcancer.org boards of her passing.
Susan passed away peacefully this morning with her family at her side. She was grateful for the support of this community.
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Susan ..a beautiful spirit such an educator
Divinemrsm ...Thankyou for posting
Bright Sydney Australia
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I have returned her after learning January 3 that I now have metastasis to the pleura of the lung. I have started taking Letrozole and Ibrance. I have been searching the site for the best topics. It appears that we found the metastasis early and the oncologist are optimistic. It does not appear to have spread any where else at the time. I am trying to be optimistic and keep moving forward. Not sure which threads are the best threads at this time.
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brutersmom- sorry that you find yourself in this situation. Keep an eye on this topic and the meds you are on. Plus maybe some of the screaming and laughing that goes on. None of us want to be here, but we're a team.
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This may be only my incidental good fortune, but I wanted to share. I've had plueral effusion recently causing SOB. Yesterday I had a gentle massage. Therapist spent 45 of the 60 minutes working on my back. She said my fascia was extremely tight. While she massages, she breathes slowly & audibly so I will do the same thing. After about 30 minutes, I could feel that my breaths were deeper. I'm still improved today and using this oppourunity to incorporate some intential deep breathing. I feel much better and plan to go back in a couple of weeks to get another massage.
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nopink2019. I was diagnosed 1/3/2023 with mets to the pleura. I had a lot of fluid. After starting on letrozole and ibrance I had one last thoracentisis. Significantly less fluid with the last one. I was told each time my lung was compressed by the fluid. The last time they told me to practice deep breathing to get it fully expanded. About a week after starting that, I had a very painfull coughing fit. Since then I have had full and equal breath sounds in both lungs. Hope you don't have the coughing fit like I did and keep improving. Deep breathing really helped me. Keep doing it.
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I had several thoras and after the last one, my lung did not reexpand and I could never tell a difference. Luckily the reduced lung capacity is small and not usually noticeable. Hopefully yours does eventually expand again but it's possible it may not.
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Hi everyone, I have stage 4 with mets on liver and has been stable with letrozole and verezenio since 2019. My Nov scan showed a new smal nodule on lung and the following scan on March23 showed multiple small nodules and 2 ground glass nodules that they are all new. I am not diagnosed yet but I know it can't be anything else.... any advice? What meds or chemo are you all using? How is it going to be like? I'm 46 and have 2 kids one is young 14 years old who will starts high school thus coming September. I am worried about my tasks and if I will be able to take care of my daughter and my Cats. I mean I don't want to be ill all the time....
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I have both liver and lung mets. It seems like the drugs I've been on have reduced both for a Time. When I've had growth it's been in both thus changing medicines. I've not had radiation on any of the sites. Apparently sometimes that is a possibility
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ailurophile Was wondering have these nodules increased in size on the latest scan? Are you still on a three month monitoring schedule? Does your MO plan to order a biopsy? If these are indeed lung mets it's so hard to predict how you will feel in the future since everyone progresses differently. I understand your concern with caring for your family. My hope is that is if these are lung mets your Mo will find the best treatment for you to keep it under control. I am TNBC so my treatment would not be the same as yours. Sending you positive vibes and strength.
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ailurophile, I understand how concerning this new finding is but as Cookie notes, everyone’s experience is quite different. I wouldn’t assume you will have a lot of issues from the nodules. Many have no symptoms at all and some experience some coughing. In my case the lung mets were in the pleural lining which tends to be more impactful as it can lead to fluid buildup in the lung and shortness of breath. But even with this, a PleurX Catheter was inserted which gave me relief and eventually the lung dried up. This was at the beginning of my journey and has caused me no concerns since 2017.
The lung mets are also unlikely to impact your treatment. They may want a biopsy to confirm it is similar in characteristics with your existing disease but generally, with progression, a new treatment needs to be considered and it’s unlikely they will try to treat the lung mets specifically beyond local treatment if they are bothering you. The lung mets will be treated with whatever systemic treatment your MO chooses as “next up”.
I hope this is helpful. Hopefully the next treatment will beat everything back!
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hi ladies, Thank you so so much for your replies. I felt much better reading them. To be honest all I need is 2 years so my daughter can have her own driver's license . So here is what my report says please give me your advise:
There is interval development of multiple small nodules in the bilateral lower lobe measuring 2 to 3 main maximum diameter which were not demonstrated on the prior exam11/02/2022. There is interval development of a 6×5mm groundglass nodule in the lateral aspect of the lateral segment right middle lobe. There is a second 8×6 liters groundglass nodule in the medial basically segment of the right lower lobe.
Consideration is given to inflammatory nodules with other etiology including metastasis not excluded.
As you can see they were not there in Nov.
But another interesting factor is my liver mets are cleared now. Report says:
The previously visualized hypotension involving the lateral aspects of right hepatic lobe is not well demonstrated on the current examination.
This makes me think if the lung is involved it should have different characteristics with my original cancer?
I am scheduled for another CT on April 21(will be a month from my current one)
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ailurophile You don't have your current treatment listed or did I miss that. My mets returned to the pleura of my right lung and were discovered in January. Everywhere else is clear of cancer so far. My pleural effusion dried up very quickly when I started on Ibrance and letrozole. The make up of the pleural cancer was almost identical to my breast cancer.
I also have ground glass opacities which I believe are similar or the same and prominent interstitial markings. I have a nodule in my left lung which has been there for several years and is not considered cancerous but it is being watch.
Ignore the stuff you read on google. A lot of it is old and out dated. They describe a poor prognosis. My MO is believes that with the new medicines out there I will be around for to enjoy many more years.
I was diagnosed 3 months ago and I am back to working out and doing most of my normal activates.
I have a intermittent cough and I am told it is due to the lung mets and allergies. Allergies are getting worse with the season and the lung mets are getting better with the meds. I would keep on your MO to monitor them and report any new symptoms.
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brutersmom, I am on letrozole and verzenio and research LY3023414 eversince I entered stage 4 on Feb 2019 . Probably they will add or change it after new prognosis?
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So from this report the nodules are still pretty small and it states there is also a possibility of inflammatory along with mets. Sometimes they would treat with a round of antibiotics to see if there is improvement if it's an inflammatory process going on then repeat CT. Since they are rescanning so soon do they think that's the case? Most of the time lung mets or nodules don't change much in four weeks . That is why typical follow up scan is three months apart. Well those are my thoughts based on the little information that I have here.
Also the part of the report that talks about liver hypotension not being well seen is not speaking in regards of liver mets/masses. Is there more information on the report regarding the liver ? Typically the metastasis is described and measured to evaluate your response to treatment. Don't know if this helps or not but that's just from my experience in reading many CT reports in my career. Obviously it's always best to speak with your MO about all of this as your MO knows best!
Wishing you improvement on your next CT.
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My lung mets are in my pleura. If you need a thoracentesis to help your breathing, they can test the fluid to see the characteristics of the tumor. You seem to have a very positive attitude, keep it up!
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cookie54
my MO said she was talking to the radiologist for 15 minutes and he was leaning more toward inflammatory ,considering where they are located at. I know my MO and I didn't believe her. I agree, 4 weeks won't change anything and it makes sense to take antibiotics and monitor to see if they decrease in size. Regarding of the liver....hmmmmm I think you are right. I believe My MO also took it the wrong way because that's what she told me. She said it's gone! Oh one more thing is my CA 15-3 test is the same compare to last couple of times. It's been 38 for a long time and it still is 38. It gives me some hope
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cookie54
Just checked my report and it did say:
Interval resolution of the previously visualized hypodensity in the right hepatic lobe
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Ok great all sounds pretty good to me then. Also good that hypodensity in liver is resolved. Yes, keep the hope!
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I've been having thoracentesis every 3 to 4 weeks this year. They are draining 1.5 L each time. Another one on Monday and I will see how much they take off this time. I experienced this for a while in 2020, but then a series of drugs dried it up. Hasn't happened yet with Enhertu. MO said I might want to consider having a catheter inserted. I think it is called PleurX. Does anyone have experience with this?
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