mets to lung
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Thanks KarPC! The Ativan is a great idea. I took one for the first time last week before an MRI and it definitely helped me to relax. I never used to get anxious during an MRI but I've become increasingly fearful of every procedure. You'd think I'd become more comfortable over time instead of less. Now I'm anxious I will become anxious! Crazy.
I wrote to my Pulmonary Surgeon and he said that I shouldn't fly for AT LEAST 8 weeks after my VATS procedure because the change in pressure could cause the pleural space to open up again. Glad I asked because that was never mentioned to me before. Now I'm wondering what else I shouldn't do that that they haven't told me.
I do feel so grateful that the VATS procedure was successful.
Hugs, Susan
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Susan - I am so glad you got an answer about flying before you made the trip!
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Susan, what type of mask are you using ?
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Anotherone,
Since I had lung surgery, I've had trouble breathing through anything but those paper surgical masks. When I'm walking outside, I don't wear a mask because it's harder for me to breathe when I'm walking. Any suggestions of masks that are easier to breathe through?
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Novagirl - my search for lymphangitic carcinomatosis brought me to your recent discussion on your diagnosis. After 2.5 years on Ibrance and Zoladex, progression took me to three months of Faslodex and Zoladex, which failed miserably. I'm one week into Xeloda with moderate optimism, but my CT yesterday has confirmed the suspicion in June of lymphangitic carcinomatosis. It confuses me as I have no pulmonary symptoms, but the final impression was "worsening metastatic disease with increasing lymphangitic carcinomatosis and osseous metastatic disease." WTF!!!
I haven't spoken to MO about it, but Dr Google has me SCARED! The report mentions both lungs, upper and lower. I can't imagine that any procedure could cover it all. I need SOME lung! Maybe I'm wrong? Or is systemic treatment my only option?
I've been sailing along with minimal SEs and living a full life. I work full time, I have two active teenagers, an active social life. I've been traveling with my kids (pre-COVID, but planning the next few), etc. And along comes this freight train. I'm looking forward to a girl's cruise in two weeks, but if I can act immediately, I'll gladly pass on the cruise. Is he going to say "drop everything, we can help", or "go ahead and cruise. There's nothing we can do"?
I'm sorry for dumping my self-pity here; I know we're all in the same boat. I just don't want to tell my family and friends for fear that they'll Google. This forum and you all are so insightful, educational, emotionally supportive. Thank you.
Novagirl - how are you?
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Piksie. So sorry to hear about this recent diagnosis. Please keep in mind that Dr. Google has a terrible bedside manner and can be a bit deceiving! While I am not familiar with lymphangitic carcinomatosis, it sounds like you are doing well (with no pulmonary symptoms). From what I read most patients with this diagnosis need oxygen etc. so hoping it's being flagged as early signs and getting you on a treatment that works will reverse the situation.
I would encourage you to reach out to your MO for clarification as soon as you can. I hate to think of you worrying in the absence of your MO's expert opinion.
Hugs.
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Susan
I understand. I am not sure it is possible to find proper filtration mask which is easy to breeze through. Some of them have a valve on so at least exporing may be easier ..
I asked because since covid is airborne unless you use really tight mask any other mask is unlikely to do much to stop it so I do not think not wearing it would be any more dangerous ..
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hello, I’m new to this group so please forgive my newbie-ness. 2009 r mastectomy with axillary dissection her2 positive. 2019 left mastectomy dcis. Today was told I have a 1.8 cm nodule in r lower lobe. Follow up soon with PET/CT. My question: how to know if this is mets or primary? I was a former smoker in my early 20’s
Thanks so much in advance
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Hi Sdak, they might want to do a biopsy. That's really the only way to be sure what it is.
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My doc asked if I was a former smoker and I sort of hem hawed…cancer is often not by choice except in the case of smoking which is, my bad choices as a young adult now at 61 I may be paying for that? Would the biopsy be under general anesthesia?
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My 2 lung biopsies were under local.
Also about 10% of lung cancer cases are in never smokers so I think they're just considering odds.
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thanks so much for this...I have been really beating myself up about this today!!!
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SDak, given your BC diagnosis I would think your MO is looking at all possibilities as Moth suggests. I’m unsure from your post if you have been diagnosed with later stage cancer. There are cases where lung nodules are benign. Only the biopsy can say for sure. I know it’s difficult but you need to avoid jumping to any conclusions. Easier said than done I know. Sending a virtual hug!
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Hi there! So I emailed and chatted with MO yesterday and today about the lymphangitic carcinomatosis from my chest CT. He has doubts about the validity of the diagnosis and hypothesized that the most recent RO wrote the summary based on the June scan, which said "can't rule out lymphangitic carcinomatosis." without really digging further. He's always downplayed things rather dramatically, but this time, I'm going to believe him. I don't have the lung capacity that I did a year ago, but I'm not suffering in the way you'd expect. And... even if it was true, the preferred treatment would be Xeloda, which I just started 10 days ago. So I'm ahead of the game, and I'm going on a cruise.
Sadie, thank you for your "cooler head".
SDak, I hope you get answers soon.
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Good girl! Enjoy
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Hi all - sorry catching up on a few posts - sorry to see others in the same situation. I had wedge resection done earlier in summer on my right lung which had two areas - the thoracic surgeon felt that it would be good to be aggressive and get them out - took about a full month to recover - I have a small nodule in left lung that hasn’t changed in size so they are leaving it right now. Just had PET and nothing else at this point. I was a little worried of recovery from wedge resection as I had awful time with lung biopsy as lung collapsed multiple times but am glad to say it worked out. I meet surgeon again on Thursday to see if he wants to do anything on left lung or follow oncologist recommendations.
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Thanks rachel5738. I was retating what the Thoracic surgeon said to me and just as you said, how can one know with out question what kind of cancer we're going to be working with without looking at it under the scope? 🤷♀️
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Good morning!
I had a biopsy. The EBUS procedure was performed on me yesterday afternoon. Their impression was that the area and nodes were fine, despite the PET/CT showing a lot of hypermetabolism in that area.
The report then went on to read they biopsied #7 and # 11 as they were present for lymphocytic activity. Now we wait another week,
Meanwhile, DOC told my DH that "...all was free and clear!"
I am so confused!
OOPS--WILL POST TO FORUM,
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I’m sorry, I’m visiting my family and missed your reply. I’m having surgery Friday so I’m gonna take your advice an just wait for the biopsy results. Zen out a little, lol!
Thanks:-)
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This thread hasn't been very active lately. I hope it's because everyone is doing well. I know a lot of us are on multiple threads for multiple mets.
I start my second cycle of Halaven on Tuesday. Crossing my fingers that Halaven is working since I've been feeling better since I've been on it. That being said, my cough is still pretty bad. I'm also hoping to get on the ARX-788 trial by the end of the year. There is a 28-day washout period so I hope to get the drug before the end of the year.
Would love to hear updates from other lung metsters.
Hugs, Susan
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hi SusaninSF
Yes very quiet....I am still stable and doing well no lung issues yet no tiredness on the ribociclib faslodex combo since September last year .and four month scan due late Jan .
Australia has still not opened up to all interstate travel and no overseas yet.
Still wear masks for indoor shopping
First event for me will be early Decmeber with fashion and fundraIser for Afghanistan women in city of Sydney
The hotter days for beach swimming have not arrived . Two months of cooler weather is unusual for spring and now wet cool days. But cannot complain
Christmas will let be a busy time as city tourist will flock to the scenic coastal beaches whereI live
All the best with your new therapy
Bright in hope
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I scan again in December so we'll know more then. My lung met has been a constant pita. It was necrotic by the time I started treatment in Mar 2020 (it had outgrown its blood supply) but about 9 months later it was back. Same area. I did a big course of rads for it (couldn't get SBRT which would have been my first choice). Two bouts of radiation induced pneumonitis since and now that section is getting fibrotic, as expected.
I have a little cough constantly and never know now whether it's the fibrosis gunking things up & just an over senstive lung or a new met. There was a new spot near the same area that they were looking at in the summer & Sept scans but it seemed to be small and stable then & we're not even sure if it's a met or scar tissue.
If it's significantly grown on the Dec scan, that would probably mean a change in systemic treatment. I was told no more rads to that area & I don't think I can convince anyone to operate on it at this point.
Susan, hope the halaven is working on the mets & that you get into the trial drug soon!
Bright, glad you're doing well! We're still masking here. The big decision for us is what to do about christmas. Last year we just spent it with the people who live here...this year I think we will need to expand that a bit & meet with more family.
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The previous concern about Pulmonary Lymphangitic Carcinomatisis has been confirmed. After two cycles of Xeloda, CA 153 continued to rise and my pulmonary symptoms continued to tank, so we made the assumption that I was not responding and moved to Halaven. Luckily, I had an immediate pulmonary response to Halaven and can breathe again.
The recent CT indicated a significant increase in osseous sclerotic lesions, "likely progression versus reaction to therapy." However, I feel 100% confident that my bone mets improved during Xeloda, because while I couldn't breathe, my bones were almost pain-free. Now that I'm no longer taking it, the pain is coming back. I also know that CA153 continued to rise because of my lungs, even though my bones improved. (Sorry if that's hard to follow.) I plead my case to MO that both were effective based on my symptoms, and luckily, he agreed to give it a go. So starting Nov 30, I will take BOTH Xeloda and Halaven. If I had let them make the call based solely on bloodwork and imaging, they might have scrapped both as ineffective and taken months/years from me.
So for this lung mets discussion, I'm doing very well.
A Pulmonologist reviewed the Chest CT and wrote a prescription for Symbicort, but I don't feel like I need it right now. I'll keep it in my hip pocket. I'm hosting 12 family members for Thanksgiving. The weather will be beautiful, so I'm setting up a table on the patio for whoever wants to get fresh air with me. Six of them are traveling via air, so we will keep our distance.
Susan, how are you doing with Halaven SEs? I'll crosspost some of this, so I'll also see you on the Halaven thread.
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Hi All,
I watch this thread but it's always been on the quiet side since I joined in 2017. Despite what Dr. Google says, it seems like the lung issues are secondary for many of us. My pleural effusion in my right lung is still there but has been restricted to loculated pockets that have remained stable. I do have odd discomfort in my chest lately which makes me wonder if things are stirring (not feeling overly confident about the Vinorelbine) but won't know until my scan on December 17th. (Seriously irritated about the timing of that one! Just found out when it is scheduled, same day as chemo and at 6:00 PM on a Friday night... yeesh. I seem to have drawn the short straw in terms of timing of scans the last couple of years - lots late at night... )
Moth, I also have lots of fibrosis. I lost about 1/3 of my right lung volume, I assume from the constant fluid build up and then draining. I do think our lungs are more sensitive and susceptible once we have issues due to cancer which is why I have been anal about protecting myself through the pandemic. I took a trip to England in 2018 and ended up with pneumonia for the first time in my life. I don't recall ever being that sick and would rather not repeat that experience!
Cheers.
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Piksie,
I don't have a single SE on Halaven and it seems to be working. My breathing is getting better though I am still coughing a lot. I will start my second cycle tomorrow. After that I will likely get on the ARX-788 trial. Now I'm wondering if I should stay on Halaven and delay the trial drug. At the same time, I don't want to risk losing my spot. The 28-day washout required for the trial really scares me. Also, I won't know if Halaven worked or not. Very difficult decision. I will see my MO tomorrow. She will likely have a persuasive argument for one or the other.
SadieServant,
I also have pockets of loculated fluid after my pleurodesis. Sorry about your bout with pneumonia. Have you had the pneumonia vaccine? I have had the first but not the second shot. Will do that in early December.
Hugs, Susan
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I hadn't even thought about the pneumonia vaccine Susan. I feel inoculated to death LOL with three Covid shots and the flu vaccine! Not sure how many wars my compromised immune system can wage over a few weeks…. 😊.
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I have switched from H&P to kadcyla and from that one to enhertu. First switch because of the little progression, second because we thought it would be better. Lungs are ok , no issues tt
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Anotherone,
Let us know how you are doing on Enhertu. Theresa45 did well on it for about a year. Hope it works well for you too!
Hugs, Susan
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Sadiesservant, I got my pneumonia vaccine in 2018 after completing Stage 1 cancer treatment. I had it as part of a whole bunch of vax that I did for entry to nursing school. I had the Pneumovax 23. It's free for >65 or immunocompromised. i did mine with Fraser public health If I didn't have I would have definitely wanted it once dx'd with a lung met. Also remember you tetanus needs boosting every 10 years (it comes bundled with dipththeria, pertussis & polio).
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Hi! Just stopping in to say hello. I developed a pleural effusion around my left lung last month and testing found breast cancer cells in it. Great! The CT scan showed a nodule in the right lung and a suspicious spot on a vertebrae, plus some ambiguous cloudy junk in the left lung that could be radiation damage. (I also had a miserable allergic reaction to the contrast fluid so that made the sucky week of waiting for the results even more sucky) Now waiting for a PET scan on Friday to get the full picture and confirm, but my oncologist didn't seem to think it would be anything else.
After a few weeks of hoping and wishing it would be literally almost anything else, I'm not inclined to be hopeful anymore. Cancer sure does make you wish for weird things! My primary care doctor and I had a laugh about that later, when she said that after I showed up with breathing issues, she'd been hoping I had asthma. Me, too, doc. Me, too....
I do have one question for now! Does anyone have experience, thoughts, or advice about pleural effusions? Dr. Google was terrifying, and it was also a little terrifying how little information came up on this forum when I did a search, because I started thinking Google was right and people with effusions passed away quickly 😬. I had a thoracentesis on the 16th and they drained 1.5 liters of fluid. I can tell it's starting to come back but so far, as before, it's just a little annoying and not preventing me from doing anything. (except jumping up and down because I hate the sloshy feeling, and I'm not even going to try running right now, ha)
I know some people end up getting catheters and that starting cancer treatment can sometimes dry up the effusion. But do they ever stabilize on their own? Or fill slowly enough that you can do a repeat thoracentesis periodically? Can you fly with them or do the changes in air pressure mess with it?
I'm so anxious to start treatment (looks like it will be Ibrance) because the slowly growing effusion makes me feel like I'm actively dying because nothing is being done yet. The cancer is just hanging out in there somewhere, generating fluid.
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