mets to lung
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Hi All,
I don’t post often, but I do check in on the boards and keep updated. I’ve been “fortunate” that until recently my treatment options have been effective with minimal side effects.
I recently made a treatment change from Kisqali/Letrozole (effective for 3.5 years) to Fulvestrant due to some minor progression to one tumour in my lung. This one lesion has been a bit pesky and was treated successfully with SBRT in May/2020. It’s the only spot that is progressing, so VATS has been suggested as a reasonable option and then continue with Fulvestrant.
If anyone has had experience with VATS, good and bad, I’d love to hear about it. It’s a bit nerve wracking to know what the right decision is to make.
Thanks,
Anna
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Hi Fathea
I have been on three different anti hormonal therapies since mets diagnosis in 2016
My mets has had some slight progression but changes of drugs have kept the scattered pulmonary tumors under control
Now on a combo of faslodex and targeted therapy called kisquali.
I do not have breathing problems ..consider myself lucky. I am fit no other major health issues
So starting anti hormonals is a wait and scan approach
CT scans every three months will detemine how effective the drug is
Everyone is different..if response is not positive another anti hormonal will be tried
All the best
bright in hope
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Hi Anna, I had a VATS last month and it was easier than I was expecting. I had 3 nodules that were suspicious for mets and were monitored for 6 months and were too small for a CT guided biopsy. After the third CT and progressing in size my MO and I decided I should speak with a cardiothoracic surgeon. I am so glad I did.
The nodule I had removed by VATS , was easy to get to as it was located on the outer edge of the lung/chest wall. The surgeon assured me that the volume loss on the lung was only 2 percent and I wouldn't notice any change in breathing. I had two incisions about 4 inches in length and a chest tube for 24 hrs. I was in the hospital for approximately 3 days. All in all I didn't think it was that bad although I consider myself to have a high tolerance for pain. Was it uncomfortable, yes. Was it tolerable ,yes. I took it easy for a week and then slowly got back to my daily routine and exercise. Everyone heals differently so they said can takes 6 weeks or more. I had it on 6/3 and today I feel a slight discomfort in bed if I lay on that side but other than that I feel good!
Glad I did it as it was confirmed to be mets from TNBC and now the wondering is over and I restarted treatment. Not what I was hoping for but at least now we are doing something about it!
Best wishes, Andrea
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Hi Andrea,
Thanks so much for your response and sharing your experience. I hope that my recovery is similar to yours.
I’m sorry to hear that mets were confirmed, but as you said, you now know what you’re dealing wit and can get back to treatment. Are you still on Xeloda? It was my 2nd line treatment and I found it pretty tolerable. I hope it’s working well for you.
Thanks again for sharing.
Anna
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Yes I hope if you decide to have the VATS it's the same for you!
This new platform is a challenge to update , I guess one of these days it will actually save my info lol. So I was on Xeloda from 2/21-7/21 now just restarted Xeloda again along with Keytruda . My MO and my second opinion MO this time around feel like the Xeloda may have been keeping things under control. I had gone off it in 7/21 and then CT 10/21 the lung nodules appeared. So they felt not to blow through too many lines of treatment we should give X a chance again. We'll see, next CT will be in about 3 months. Fingers crossed!
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Hi,
Sorry I wasn't able to log back in since May, got a new password and I am back. The reason I do not want to take antihormone treatment is the cognition issues and short term memory loss. I am on Navelbine day 1 and day 8 every 3 weeks. I should be starting cycle 7 on August 12. I am doing well, my energy is back, and I am exercising again 3 times a week., getting stronger every day. I am losing weight however and cancer markers are stable, but not going down. I never had increased cancer markers until May. I was diagnosed with mets to Lung in March and had surgery on both lobes all 5 lesions were removed and I lost about 20% of my lung with the wedge resections.in March. I started chemo (Navelbine) April 7. Cancer markers were never elevated until May 19, they went from 23 to 42. 3 weeks later down to 36 1 week later up to 37, then 1 week later down to 34, 1 week later (this past week) back up to 35. Not sure exactly what that means, my oncologist thinks it is "Tumor blast", but I don't know what that means either.
My issues now are my absolute neutrophils are decreasing. According to the trend, I expect my level will be too low for me to have my chemo on August 12. I asked for the Neulesta after my last chemo, but the nurse practitioner declined and said I can just get a lab test before my chemo and if it is too low they will order Neupogen as a script. However, I don't have script coverage, if they did the Nuelesta, my insurance would cover it as part of chemo out patient, but a script I need to purchase. Nuelesta needs 14 days before chemo, so now I can't get Nuelesta until next cycle. The cost of neupogen is prohibitive for me.at well over $500 per injection.
I am very afraid if I miss my chemo with my cancer markers currently rather stable, that the cancer will grow. My last scan, end of May I was NED, I was hoping to keep it that way. My next scan is after cycle 7, in August, if they give me my chemo. I sure wish they would listen to me about my body. I keep very good records, and have my numbers in a spreadsheet. I sent this to my oncologist, I hope he has time to look at my data.
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I tried to post an image of my spreadsheet so you can see my data, it showed in the preview, but not the actual post. Is there a way to post an image?
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Hi, carmstr835! Yes, you should be able to post an image. Just click the graphics icon (rectangle with mountains) in the post toolbar, and then click CHOOSE FILE and find a photo on your computer. When you are ready to post it, click on Submit. We hope this helps, and please let us know if it works!
The Mods
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Yes, it can help with lung mets.
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Navelbine is my First line of treatment, he said Enhurtu is next. I hopefully will be starting cycle 7 this week, it is not a bad chemo. I have stomach issues, mostly gas and chronic constipation, but it is all pretty easily handled with meds. Lately, neuropathy in my upper right thigh has become quite painful but no idea if that is related or not, but it is horribly painful. I have a message into the pain Doc at my cancer center. My oncologist just said there are lots of nerves in the groin area and the reason they don’t like to do groin pic-lines. Which they were doing for me until I got my port in Mid April. He said it will heal, but it takes a long time. That sure isn’t much help when I can’t sleep and nothing takes the pain away. It has been getting consistently more painful since March 7. Lately almost unbearable. I only see my oncologist once a month. He isn’t very helpful lately. I think rub him the wrong way. Looking into finding a new one. I hate change and been withhim for 5 years. Sometimes the unknown is worse that the uncomfortable.
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hi, I’ve had liquid building in my lung and now I think abdomen too. The lung one is nasty. I’ve had 3 taps now in a couple of months and am waiting for a pleurx. I’m on xeloda for now but becuase of the liquid buildup I’ll prob end up switching. This is what shows up on scans. Will this shortness of breath get better and tiredness go away ever? I’m so discouraged. I feel like doing nothing all day. QOL sucks.
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dancingdiva,
Sorry to hear about your struggles with a pleural effusion. Many people dry up after doing 1-3 months of draining with a Pleurx. You will certainly feel better being able to drain more frequently. Some, like me, never dried up with a Pleurx. I had a pleurodesis procedure where they spray talc in your pleural space to get the sides to stick together. Thankfully, that worked for me. Because of lung tumors, I don't have a normal capacity for breathing but I am able to stay active. The key to it all is that you get stability/shrinkage of your lung mets.
Hugs, Susan
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DancingDiva,
Thank you for sharing your experience. I have a MPE as well. The coughing, and expelling of clear fluids has been the hardest part of my diagnosis. I don't find many people talk about this part of the disease. I'm trying to track triggers. I find a majority of the time the gagging and expelling of fluid happens in the car, after eating or drinking, and in the morning. Why? Is it the motion? Is it air conditioning? Because I've been in one position and moved? Why is food/liquid a trigger? I wish I knew! When I am coughing so violently, I have no control of my bladder. I am 45 and I have to wear a poise pad daily and pray that it is enough to keep me from embarrassing myself.
I've only had one thoracentesis. The fluid came right back, but MO does not want to drain as it is considered "stable" fluid returned to the same level (50% of the pleural space). I have started walking and the shortness of breath has absolutely improved. Before my first thoracentesis I couldn't walk 10 feet without gasping for air.
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Has anyone had Cryo to met in lung? OR any kind of local therapy?
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Nicole,
Just after my first Stage IV diagnosis 8+ years ago, I had radiation to a large mass in my lower right lobe. That spot is mostly necrotic now and has never given me trouble. I also recently had the area around my lower right rib cage radiated. A lung tumor was eroding the rib bones. Now I have lots of nodules so can't do radiation or any kind of local treatment.
Since you only have one, small spot in your lungs, perhaps it's a good idea to do local treatment.
Hugs, Susan
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Susan...I am confused... you said Nodule and tumor...I thought mets are mets?
So I found out today I have this:
A 0.4 cm nodule in the posterior right upper lobe, image 27 of series 5,
appears slightly denser. A 0.3 cm nodule in the anterior right upper lobe,
image 22, appears slightly larger. A few additional bilateral pulmonary
nodules are again noted. For example, a 5 mm groundglass nodule in the left
upper lobe, image 32, previously 5 mm.
Can these not have localized treatment bc they are called nodules?
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Hi nicolerod I have lung mets that were diagnosed by me having a wedge resection of one of my 6mm nodules to confirm mets. I was stage 3 C at the time and had 3 lung nodules that were also to small to biopsy. Seems to me that multiple lung mets once confirmed are typically treated systemically rather than radiation.
Prior to my surgery I was having CT every 3 months to check growth.For me to get an answer rather than keep watching I decided on surgery. I was getting anxious waiting and wanted to get started on treatment.
Best wishes
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Nodules are just small tumors. For some reason the radiologistss like to call the small ones "nodules". I have an increasing amount of "ground glass" too but I think those are not cancer. The report said, "Additional sites of peribronchovascular groundglass and consolidation are seen, likely representing infectious/inflammatory process." Don't know what to do about those. One radiologist said "Likely pneumonitis" when writing about the ground glass stuff but my MO said that wasn't true.
Sounds like the nodules you have are so small they don't want to radiate. I know they can radiate 2mm tumors because I had one radiated in my brain.
Hugs, Susan
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Thanks for the input ladies I really appreciate it.
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Hi Barb welcome to the site but sorry that you are here to begin with! Also sorry to hear your cancer is not responding to the Abraxane. Cancer stinks!!! I am new to Stage IV with lung mets so i am not familiar with Navelbine. I just wanted to lend my support to you and wish you all the best.Hugs
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Hello! I am 4 years in and just finished a course of proton therapy for a mass over my sternum. Was excited to see good results on my PET scan - they told me not to expect results until December, but the mass had already shrunk in half. Unfortunately, when you take 2 steps forward, sometimes you take 4 steps backwards. I have 2 hilar nodes lighting up, so going on to biopsy. Are there treatments specific to lung mets? I have gone through ibrance/letrozole, faslodex/affinitor, got severe lung inflammation with both ibrance and affinitor, and currently on letrozole/faslodex. I've been on faslodex for a year, was hoping that the radiation would keep me from having to change but looking like theres a new treatment in my future.
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Hi, I thought I would update you all. Navelbine was fine, but did not lower my CA15-3. It was stable after 4 months, so my MO switched my treatment to Enhertu on Sept 2. That didn’t work for me, next week we are doing Gemzar. I am hoping that one will do the trick. Good luck everyone and I hope your treatment works well
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carmstr835,
I'm surprised your MO would switch treatments if you are stable. I think of stable as a great response. I've only experienced shrinkage on three of my thirteen treatments so far. Treatments that have kept me stable have kept me alive all these years.
Hope Gemzar works for you!
Hugs, Susan
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When I was diagnosed, my cancer markers were normal, my Pet scan was normal, but I had increasing in size and number lesions in both lobes of my lungs. They were very tiny, but doubling in size and was concerning in only 2 months. The decision was made to do thoracic surgery and it was breast cancer. 2 different types just as my original cancer. I had 2 primary cancers one in each breast.
The decision was to do navelbine first and if it failed or progressed to do Enhertu. I began navelbine 2 weeks after my final thoracic surgery. 6 weeks later was when my CA 15-3 went from normal 23 to 42. The thought was tumor flare, but it continued. it would drop a point or 2 then increase a point or 2. He called it stable, but after 4 months it was not tumor flare and suggested I try Enhertu. I had had 2 scan but neither should any progression, just the cancer markers.I switched to Enhertu, but the side effects were unbearable for me. 5 weeks or misery, no quality of life. It was my choice to stop Enhertu. Navelbine was stable, Enhertu has side effects, so the next line of treatment is going to be gemcitabine according to my medical portal records. I will find out next week.
My thoughts are, I want to kill this cancer, not let it hide until it finds a way to circumvent the treatment. My oncologist is aware of my preference. I told him any chemo that is not infused with sugar is acceptable with me. He is not happy with my discontinuing the Enhertu, but that is my choice. I guess Enhertu is a miracle drug that works in 80% of breast cancer patients, but it is the sugar it is infused with and made with I can’t deal with. Fasting allows me to have a normal life by alleviating all the side effects, but when your sick in bed for 2 weeks out of 3 that is no quality of life. I would rather take a chance on something that works on 30% of breast cancer patients and have no side effects. The efficacy rate is an average, Gemzar just might work well for me. I know the Enhertu raised my cancer markers after the first cycle. It could be tumor blast, but it doesn’t matter I can’t live like that. So he is going to change it.
I don’t know if he will do a scan before the switch, or wait till November.
Thanks for replying Susan. You sure have gone through a lot. I am just starting this stage 4 thing and I know the expectation is chemo for life, but I have other expectations. I believe I can beat this. So far I have had clear scans for 6 months after my lung surgeries. I just need the cancer markers to get to normal. My MO wants me on chemo at least a year, he was hoping I could do Enhertu for a year. Well that didn’t work. I read all your treatments wow. I hope you are doing well. Congratulation on handling all this. You are amazing
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You do realize you're in a group where virtually everyone is posting here because we've been taking chemo? Or many other treatments? We don't do these things because we "expect" to or because someone else "expects" us to. We do them because that's what keeps us alive. People don't die from MBC because they expected to. They died because the cancer killed them. We'd all love to beat it but that's just not realistic at this point.
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Sorry, to bother you. I guess I am in the wrong place to learn about this new cancer. I am sorry to intrude.
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You're in right place. I'm just tired of people assuming that being cured is an option and that those of us doing chemo and other ongoing treatments chose that instead of a cure. Maybe nobody has explained it to you yet? If so, I'm sorry if I was too harsh. But unfortunately there is no cure for metastatic breast cancer. There are some lucky people who live for 15-20 or more years but they are still very unusual. Most of us do whatever available treatments there are for as long as they continue to work. And hope an actual cure comes along before we run out of options.
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Dear Carmstr835, you raised some very important questions which deserve its own thread.
1. can surgical resection of all metastatic lesions at the beginning of MBC diagnosis improve PMS, or even OS? Many research studies have attempted to answer this question, and the verdict keeps changing. You can google these studies results easily.2. Can a course of chemo immediately following the complete resection further improve PMS, or even OS? If so, what chemo agents? How to monitor the course? Tumor marker is a poor indicator at best. X amount of decrease in TM does not equal Y amount of decrease in tumor burden, for example. In fact, you being NED, you have no tumor burden. It seems to me you want to aim to eliminate as many stray cancer cells as possible while you are NED. In this case, checking your circulating tumor cell counts may be a much better tool. You can get this done through a liquid biopsy.
3. About chemo choice. Are you still ER positive and HER2 positive? But resistant to Herceptin? This is a tough one, when you can’t tolerate Enhertu. Chemo only kills fast growing cells. No one knows if those stray cancer cells of yours are enough fast growing and will respond to chemo. And to any chemo? It’s interesting you had Navelbine as first line. Why Navelbine? It’s usually a later line chemo choice because there are proven more effective chemo agents in the same class of drug, ie Taxol andEribulin. And why gemzar now?
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