Topic: mets to lung

Oct 28, 2021 12:40PM - edited Oct 28, 2021 12:41PM by Sdak1403

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,

Nov 22, 2021 06:49AM SusaninSF wrote:

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

Nov 22, 2021 08:20PM moth wrote:

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.

Nov 22, 2021 10:43PM Sadiesservant wrote:

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.

Nov 23, 2021 07:35AM - edited Nov 23, 2021 07:35AM by Sadiesservant

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…. 😊.

Nov 23, 2021 05:36PM SusaninSF wrote:

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

Nov 28, 2021 10:06PM ParakeetsRule wrote:

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. :(

Nov 29, 2021 02:55AM Sadiesservant wrote:

Hi Parakeets,

Sorry you are finding yourself here. I can imagine how you must be feeling at your young age. I was originally diagnosed at 38 but then went almost 16 years until I was diagnosed as metastatic as a result of a malignant pleural effusion. I was also ready to buy my burial plot based on Dr. Google’s prognosis but he was wrong! My MO made it clear he expected me to do well for quite some time and now I am coming up to five years metastatic.

I had quite a bit of fluid by the time I was diagnosed and had a small thoracentesis at the time they took fluid for a biopsy. It didn’t last and, after a second thoracentesis we decided to have a PleurX Catheter inserted. That was the ticket to resolving the issue. Home care came twice a week for about five or six months to drain the lung until it suddenly dried up. I now have loculated fluid that remains but it doesn’t cause any issues. My lung is somewhat damaged from the fluid/draining so I am careful about exposure to respiratory illnesses but I flew to Britain less than a year after the catheter was removed.

The pleural effusion is something that can be dealt with and a good treatment will help to knock it back. Hopefully you will start Ibrance soon and see quick results but don’t hesitate to reach out if you have any questions.

Dec 1, 2021 09:45PM Sadiesservant wrote:

Thanks for the laugh GR4C1E. Yes... it can be liters of fluid. At one point I had more than 3 liters drained off of my right lung. That get's painful when it gets close to being empty. Ouch! I remember that well. Home care used to pull just under a liter off every 3-4 days. My body LOVES to make fluid!

Dec 1, 2021 10:14PM ParakeetsRule wrote:

SusaninSF, thank you! That is all helpful to know. My effusion seems to be pretty slow growing so that's good. It's been just over two weeks and it wasn't until today that it started feeling a little tight in there again. I'm going to have to reach out the pulmonologist soon to figure out what to do. The thoracentesis wasn't too bad but I don't know if it's something I can do repeatedly. I'm guessing not. What's the Pleurx like? In my head I'm imagining the drain tubes from after the mastectomy and I remember how much they suuuuuuuuucked.

Sadiesservant, Sadly we do not have home care here in the good old USA. At least not as a standard or routine thing. You either have to enlist family or hire a service. That's one reason I want to avoid a drainage tube! I live alone so I would either have to get a relative to come help drain it or go back to the hospital. (neither of which is terribly difficult if I'm able to to go this long in between drains, but still!) As for this diagnosis at my age, I think other people are more disturbed than me. I would obviously prefer to live to 100 like I planned (ha) but I don't have kids and I've been lucky enough to do about 5 people's worth of bucket list items already.

GR4C1E, your post made me laugh so hard. Nobody was more shocked than me. "What do you mean you pulled out a party-sized soda bottle's worth of fluid?! FROM WHERE?!" Hahaha. I'm 5'2" if you round up and weigh about 118 if I eat a lot of snacks. WHERE WAS ALL THIS FLUID?!

Dec 1, 2021 11:06PM SusaninSF wrote:

Parakeets,

Doing the drainage yourself isn't difficult. The part that I needed help with was putting on the dressing since my drain was on the side of my chest. It can be done if you keep a mirror nearby but will probably take some practice. The Pleurx was uncomfortable at first but I quickly got used to it. I was draining about 300cc.s every day so that was pretty inconvenient. I even had to travel while draining. A box of 10 of those drainage bottles cost my insurance company $3,400! So happy my Pleurodesis procedure was successful and I'm now healed up with no drain. I'm grateful that there was something I could do even if it wasn't easy.

Hugs, Susan

Dec 5, 2021 07:07AM rachel5738 wrote:

Hi all - it’s been a quiet few weeks for me which I’ll take as a good sign. I see my Docs again in early Jan to check on tumour in left lung bi had wedge resection earlier this year in right lung. Healed well bit also had small pleural effusion. We will see what 2022 brings. Everything was stable at last scans so I’ll take that into the new year. 

Dec 6, 2021 02:54AM Sadiesservant wrote:

Parakeets, I had no restrictions with the PleurX beyond no bathing. However, you will be sore for a few days and should wait until things heal before doing anything strenuous. It does sound like you won’t need to be drained too often. My lung filled up within days to the point that I could barely make it to the end of my driveway without gasping for breath.

Sorry about the confusion. Hopefully you will be back on track soon

Dec 6, 2021 12:25PM Karenfizedbo15 wrote:

Hi All, just to jump in on the Zometa chat. I was also scheduled for this but, since I have no other infusions and am trying to avoid the ‘chemo ward’ for as long as possible ( although I’m on Capecitabine), I made a bit of a fuss about it. They switched me to Denosumab which does the same job but is a sub cutaneous jab and has less side effects than Zometa…..it’s also at least twice as expensive. I’m about to ask them if I can do this myself at home instead of waiting up to a couple of hours in hospital!

I’ve been on that for about 8 months and my MO says it can be indefinite as long as working. My dentist is very up on all of this and is confident we can deal with any dental issues.

Never heard of a PleurX ….but having had 2 large pleural effusions and a pleurodesis in Jan, will be keeping an eye on that!

Dec 7, 2021 10:26PM ParakeetsRule wrote:

More lung fluid thoughts and questions! :) I have a drain installation scheduled for tomorrow but I'm thinking about cancelling it. I watched the videos they told me to watch to prepare, and it was all talk about "going home for one last time" and "getting you back to doing the things you love" and other similar ominous sentiments. But that doesn't apply to me at all. My effusion is nowhere near bad enough to make the idea of getting a drain seem like a relief. It just seems horrible and having it will make me feel horrible. And I currently feel pretty good considering the overall situation so why mess that up?

I've now gone three weeks since it was drained and there hasn't been anything I can't do. Feeling it slosh if I bend over is annoying and some activities are a little more challenging, like going up multiple flights of stairs, and talking on the phone while walking my dog up a slope (ha) but that's pretty much it. And I actually feel a lot better this week than I did last week when I talked to the pulmonologist. I'm getting Zometa and seeing my oncologist before the drain procedure, so I'm going to ask what she thinks because she was out on emergency leave when I went back to the pulmonary office last week. Fingers crossed I can also start Ibrance and Faslodex tomorrow. I've never been so excited for medicine before!!!!! :D

Do effusions grow and shrink on their own without treatment? Is that why I'm feeling better this week? Or are my heart/lungs adjusting to the reduced lung size? Is long term damage an issue if my lung doesn't get enough space for a long time? Can your pleural cavity pop a leak if it gets too full? (I would have asked the doctor when he called today but that was before I watched the videos and spiraled downward)

Am I being totally irrational for wanting to cancel this?