mets to lung
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I had nodules (or lymph nodes- is that the same thing?) around my lung that were cancerous. I saw a pulmonologist who said the only way to biopsy one was to do surgery to remove one. I refused it. Since I also had bone Mets, they did a bone biopsy which fortunately worked. After I started meds, the lung nodules went away.
Now I have a pleural effusion (along with bone mets). Waiting for the results of a liquid biopsy before starting a new med.
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GoKale, lung nodules are small masses in the lung. They can be benign or malignant. There are lymph nodes all around the lung but if they saw things there they'd call a mass in a lymph node or something similar.
Bummer about the pleural effusion. Were you able to get a sample of that for testing or are you doing a blood based biopsy?
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Moth - Both - they extracted a bunch of fluid, tested it and found cancer cells. Also waiting on the results of the liquid biopsy to see which drug I should take next. Should get the results maybe Feb 3rd.
Thanks for that explanation. So I didn't have nodules, just lymph nodes affected. I don't know if the pleural effusion is related to those lymph nodes from last year when i was first diagnosed stage iv. But looking ahead and hoping that the new med will take care of the pleural effusion and this annoying cough.
Oh and I did have Covid and got the antibodies. So everyone who knows me thinks I'm still coughing bc of Covid. I told my office mate yesterday that my cough was due to the cancer not covid (so I am not spreading covid germs). He's a nice person and genuinely sorry about the cancer. But I didn't to worry him needlessly.
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Thank you Sadiesservant for your reply. At this point as I have always said since the beginning , it is what it is and there is nothing I can do to change it. Just keep on living life and try to not let cancer steal my joy!
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My first evaluation scan isn't for at least another month, so I have no idea yet if Piqray is actually working...but...I noticed during the last week that sneezing doesn't hurt anymore. Still feels a little weird, but I don't dread it so much. And it doesn't seem like my pleural effusion is as bad as it was at this same time after my previous draining. Yay?
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ParakeetsRule,
Sounds like it's working! Piqray is one of only two treatments I've been on that actually shrank my tumors. The trick to it is controlling your blood sugar. I went on a keto diet and had no problems after that.
Hope you continue to see improvement.
Hugs, Susan
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So far so good on the blood sugar! They told me to check it in the morning before eating a few times a week and to let them know if it gets to 160 or more. It's up over my normal level but it hasn't crossed 160 yet. It did hit 156 once but I think that was the time I made and ate cookies and had a glass or two of wine at 11pm the night before checking it. Ha. Oops! Most readings are 120-130 something. I haven't had to make any diet changes yet, thank goodness. I don't normally eat a lot of sugary stuff and don't drink juice or soda, so that's probably helping.
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Has anyone had the catheter thing put in place for a pleural effusion? I just spoke to a doctor about it, and she said that for many people, they don't have to keep the catheter forever, and eventually, there is way less fluid so it can be removed. If you had one in, were you still able to exercise? Any limitations on activity? How was the maintenance? Did it bother you when you sleep?
She made it sound like a reasonable solution, but I have found lately that the docs tend to gloss over the details. My doc said the thoracentesis was easy, but I found it painful and unbearable (though the report said I handled it well, lol - that was generous!).
I'm thinking that I am going to have to do either another thoracentesis or the catheter thing because the doc said that while the new med will work on the pleural effusion, it will take some time. I had the first thoracentesis done 1/3, and 2-3 weeks later, the fluid has built back up some.
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GoKale-I had the catheter for about 6 months. It helped my body get rid of the pleural effusions and to breathe more easily.
1) I was still able to exercise but at that point I was mainly taking daily walks and doing yoga. With yoga, the catheter made it difficult to do forward bends. They didn't feel right so I avoided them during that period. I am pretty sure I was also not doing inversions (headstand/shoulderstands) at that time. I wouldn't risk playing contact sports with it either.
2) For me the biggest limitation was not being able to swim or take deep baths.
3) After a few nights, sleeping was no problem, even though I sleep on my side.
4) I was required to have a visiting nurse drain the catheter for the first several weeks. That was not very convenient because I was still working and I wouldn't learn until 10 pm the night before when the nurse was coming. I had to argue with my pulmonologist and prove by a demonstration in their office that I could safely drain the catheter myself. The video that comes with it shows a person draining it by herself so it was very annoying that I had to fight that so much.
5) I had my catheter in during fall and winter months so it wasn't noticeable to anyone but me. But it might have been more noticeable during summer when we wear lighter clothes. It was a bit depressing to have this very visual reminder that I was a cancer patient but being able to breathe better outweighed that.
To be honest I didn't like having the catheter but it "did its job" as my oncologist said and it was really great once it was able to come out. I think it all depends on how much fluid you have and how quickly it builds up. I was having a lot of shortness of breath and low oxygen levels pre-catheter so it was considered medically necessary for me. Initially I feared it would never come out but thankfully I got better and the fluid mostly dried up.
I know it is a big decision and I wish you the best.
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GoKale,
I also had a Pleurx. Comfort-wise it wasn't too bad. I was able to continue to do yoga and Modern dance with it in. Sometimes I couldn't breathe doing shoulder stand because of the fluid. Other inversions were usually ok. Sleep wasn't an issue either.
However, in my case, I was draining 300cc a day and it wasn't getting better so I eventually had to have a pleurodesis procedure. That procedure was no walk in the park though they made it sound like it would be. The main thing is it cleared up most of my pleural effusion so it was worth it. I'm so grateful that it worked.
I know a couple of women who were able to dry out there lungs with the Pleurx after a couple of months. I hope this work for you.
Hugs, Susan
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Pleural effusion was the first sign my cancer had returned, and at my second thoracentesis I was offered a catheter but declined it. I know some people get them and are able to remove them after a few months because it helps the fluid dry up, but I just can't deal with a tube coming out of my body right now. (I think I wrote more about it farther back in this thread?) The pulmonologist said the fluid isn't dangerous and that I can still exercise, and they are fine with me having fluid in there as long as I'm not overdoing it and can breath well.
My effusion has not been a huge problem. It's just occasionally annoying, and the pulmonology team said it's fine to continue doing a thoracentesis periodically. It only takes about 15 minutes and isn't painful for me, though I'm a little sore after and my lung feels weird, but after three days I'm fine. After draining, it's been taking about two weeks before I notice any symptoms but it doesn't affect my daily life unless I do something crazy like walk up four flights of stairs! Then I have to catch my breath like I sprinted 100 yards. But I still walk my dog and have started my exercise routine again. I avoid things like jumping and running, but only because I can feel the fluid sloshing around.
The last thoracentesis was a full month after the previous one. I'm due for another one next week but I think I could go longer, which I hope means the fluid is starting to build up more slowly!
Edit: Updating to add that at each thoracentesis they've been getting over a liter of fluid out. The first one was 1.8 liters, then 1.4, then 1 liter. They could have gotten more at the last one but opted to stop after 1 liter. When they get close to the end, it can become painful and you can start coughing uncontrollably when your lung reinflates. But they can stop before that, or stop right when you first cough or tell them it hurts
I don't understand how I have that much fluid and very little trouble breathing, if any. I would get the catheter if it was building up a lot faster or if I couldn't walk without getting short of breath.
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Hi GoKale. I had a PleurX catheter for about six months and, for me, it was a god send. I think it really depends on how much fluid you have and how quickly it accumulates. In my case I had a LOT of fluid. I was initially diagnosed with MBC as a result of the pleural effusion. They took about a litre off when they pulled off fluid for the biopsy but it quickly came back. About three weeks after the first thorocentesis I could barely walk 100 yards without gasping for breath. They did another thorocentesis at that point, pulling about 3 litres off of my right lung. I agree, it's a crappy procedure and super painful if they pull too fast or once they get near the end of the fluid. It was quickly coming back again so we went for the PleurX.
I can say that I found the catheter pretty easy to live with. While I don't do sports, I am pretty active, walking my dog a lot and working in the garden and it didn't impede my activities at all. As noted, it was a bit of a bummer not being able to bathe and I had to take precautions when showering. I had a home care nurse come twice a week to drain the lung and typically they would take about 800-900 mLs off each time. I actually suspect that the irritation from the draining (there was some discomfort each time they got close to emptying the lung) likely led to more fluid but finally, one day it just dried up.
I still have loculated fluid in my right lung but it doesn't bother me and I've never had a repeat of the original high volumes of fluid.
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Chicagoan, Susan and Parakeet - thank you so much for the detailed feedback. It's comforting to hear real stories of this so I can be prepared. I haven't done any hard exercise now for a long time. I walk everyday, lift weights and do casual bike riding so it sounds like I could probably still do those things. So good to know that I might need it just a couple months or much longer. My effusion is problematic because I cough all the time, and sometimes I cannot finish a sentence. It has disturbed my sleep because of coughing. But I prop my head on two pillows which is fine when I lie on my back. When I walk up steep hills (and today just walking up a mild hill), I am breathing hard and have to stop.
What I would really prefer is to just do the thoracentesis a few more times while I wait for the new drug to work. But I agree, if I need the catheter so that I can stop coughing, breathe easier, walk and do normal activities without gasping for air, it will be worth it.
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Chiming in to let you know that we have our
VIRTUAL MBC Meetup TODAY (WEDNESDAY) AT 4PM, ET:
Register here: https://breastcancer-org.zoom.us/meeting/register/...
Hope to see some of you there!
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Posted this on the liver and clinical trials threads earlier. Hope this thread can become more active. I know there are a lot of us with lung mets.
Just got my scan results yesterday. Everything is shrinking or disappearing! Haven't had a scan this good since I was on Alpelisib (Piqray) almost four years ago. Usually, the best I could hope for was small progression or stability.
No noticeable side effects so far. Will get my 3rd infusion next Thursday.
If anyone wants to give ARX-788 a try, they are still accepting new patients.
https://clinicaltrials.gov/ct2/show/NCT04829604
Cheers, Susan
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woo hoo awesome great news SusaninSF
So mamy treatments available we are very lucky to have new therapies....finding the right one which is effective for our own individual cancer is amazing
All the best
Bright in hope
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Bright55,
Yes! It's overwhelming how many treatments for all types of MBC are in the trial pipeline. I hope they can move them quickly to FDA. approval. Those oral SERDs seem to be taking a long time to be approved.
Thanks for your kind words!
Hugs, Susan
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I sent out the wrong trial link. They started a Phase 2 trial for HER2+ only. I am HER2 2+, equivocal. The trial I am on is Phase 1 and enrolling HER2 3+ and HER2 2+ patients.
Here's the link to the trial:
https://clinicaltrials.gov/ct2/show/NCT03255070
Hugs, Susan
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Hi everyone,
I came here looking to see what kind of exercise one can do with a Pleurx catheter and I was happy to read that it should be possible. I've have 3 previous pleural effusions (2014, 2015, 2017) that resolved after a thoracentesis & change of treatment, but this latest one was massive. They took out 4.8 L during the pleuroscopy last week and the home care nurses have been taking out 1 L every 2nd day. Hopefully new drug (starting Monday) will dry it up.
After a week on the couch feeling quite sorry for myself I am starting to feel better. Can do the stairs. Eyeing the stationary bike. World outside is an icy mess so maybe not quite yet. But I've been wondering about restarting Pilates - and it seems others have been able to do yoga so likely quite doable. Though I hate planks anyhow:)
I'm also hoping the biopsy from the pleuroscopy might show something interesting. Previous tests have never suggested HER2 equivocal, but maybe this one will?
Susan - congratulations on the great results on the ARX-788 and thank you for the link.
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NewGardener,
So sorry you had so much fluid. I can't imagine how you could function with almost 5 liters of fluid in your lungs. I had 2 liters before I had the catheter put in and I thought that was a lot. I was draining my lungs every day and getting 300 ml/day. Luckily, the pleurodesis procedure worked for me. I don't think my surgeon was too optimistic because he put in another Pleurx when he took out the old one and did the pleurodesis procedure. I didn't need it but it caused a lot of pain and scar tissue putting in this new Pleurx because it was in a different position, toward the back, compared to my original Pleurx. I hope your new treatment works! What is the new treatment?
Hugs, Susan
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YIKES 5 litres! I had 3.5 Litres and lost half a stone when that was drained. As a retired PE teacher I can confirm exercise is good for us. Yoga/ Pilates. Walking and even a wee jog if the breathing allows
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SusaninSF - great news on your scan!
NewGardener- hope the new drug is effective on the pleural effusion. Which drug are you starting? Hopefully you will feel better very soon.
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Thanks everyone for the supportive comments. This is a hole I'm in but I'm finally feeling like climbing out...
The trial drug I'm starting tomorrow is enfortumab vendotin (Padcev). It's an antibody drug conjugate (ADC) that's already approved for urothelial cancers.
Here's the link to the trial. I'm in the HR+ breast cancer cohort. https://clinicaltrials.gov/ct2/show/NCT04225117
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NewGardener,
Sorry I forgot that you had told us about this trial before. Such a promising trial and it is being offered at UCSF. Unfortunately, you must have had less than 2 cytotoxic treatments. So frustrating that those of us who are heavily pretreated are excluded from Phase II or III trials.
Hugs, Susan
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Oh Susan I total agree about how frustrating it is that so many trials exclude pre-treated patients. I feel like I only got in to this current one by the skin of my teeth.
I've made my oncologist laugh when I said I was planning to feign amnesia and not know who I am so I could walk into a new cancer centre and suddenly be newly diagnosed again. Of course the mastectomy scars, port and pleurx might give away that I've had some treatments.
Edited to add - so far so good after yesterday's first treatment. Even rode 7 minutes on the stationary bike today...chose Central Park in NYC:)
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I posted this is a different thread and got this link, I am hoping for some answers. Thanks for any advise or knowledge you can offer me. Finding out your stage 4 and no real plan is pretty scary. I know you guys have been through this, so If you can share I would really appreciate it.
Hi sisters, it has been a while since I have been here, but I remember the information I was able to read about was very comforting to me. I find myself here again.
My Oncologist ordered a CT scan of my chest in December, it showed 3 nodules that were not there in June. He was concerned and didn't want to wait the 6 months. He ordered the CT scan for last week(2 months later). My oncologist was not available after my scan. I read my own scan, it now showed 5 nodules/bilateral lobes, and now significant growth. Some almost double. The radiologist stated very concerning for metastatic disease in the report. I have not been sick, not even a cold and the scan in June showed nothing at all. I was very upset my appointment was canceled, but it was rescheduled for this past Friday. I emailed him and asked if he could order a pet scan and biopsy so we would have a plan when I talked with him Friday. He did order a PET can and a pulmonary consult. Well, his new appointment got canceled again, this time his family emergency. Not much you can do about that, but it sure does leave me hanging.... I had the pulmonary consult and PET scan. The pet scan was negative, they said too small, I was hoping that meant it wasn't cancer, but that was my wishful thinking.The pulmonary Doc said he could not do a bronchial biopsy, he tried to get an IR doctor to do a needle biopsy, but the IR Doctor said he did not believe it would be possible and could do more damage than good, he sent me to a Thoracic surgeon.
I had an hour discussion with the thoracic surgeon on Friday afternoon and he brought up all 3 ct scans on the monitor and explained all the growth. I asked what are the chances this isn't cancer? He said none. It looks like cancer, it is rapidly growing in both lobes. It is cancer. I asked what about primary lung cancer, but he shot that down too, because of the sudden appearance of 5 nodules, it is metastatic. He will do a wedge resection on the 3 in the right lobe, I think he is also going to remove the 2 in the left as well, but not sure if it will be the same surgery. This will happen March 8 at 1:30PM. One night in the hospital. He said I will need systemic treatment, as well.
I have no idea what kind of chemo, or radiation, he said they can do radiation again even though I had radiation to my breast. I want to keep my hair. Is metastatic chemo something you can use the cold capping for? Is it IV, or oral? Do you lose your hair with oral chemo if that is the way to go?
So there is no question whether it is cancer or not, the only concerning info needed is the type of cancer(Her2 /Hormone receptors);. I am stage 4, metastatic breast cancer spread to my lungs, almost 5 years to the date from my first diagnosis. I had to read it for myself and still have not communicated with my oncologist of 5 years. I sure hope I see him before my surgery on the 8th, but they told me he was already fully booked for that week.
I have lots of questions. I am on Human Growth Hormone (HGH) because of the benign lesion on my pituitary gland my pituitary gland is not producing it. My Oncologist is aware of this and told me, that HGH can't make cancer grow if you don't have it. If it is there, it would have shown up eventually anyways, and that quality of life means something, and I wholeheartedly agreed. If they remove the nodules in the left lobe, will they also do surgery on the right? Or might they do chemo first to see if it works on my new cancer? Do they also check lymph nodes for metastatic lung cancer? These lung nodules are very small, and no symptoms at all. 3 of them about 1 cm and one is about 8 mm and the 5th one is really small. My surgeon thinks he will remove them all.
So I wait. Any help or info anyone can give me would be very much appreciated. Especially what chemo they do now? Do they do lymph node dissection for lung metastasis? Anyone had a lung wedge biopsy on both lobes in the same surgery? They are planning robotic surgery, the Davinci robot. Also, anyone else on human growth hormones?
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hi carmstr, sorry you find yourself here. I think your systemic therapy will really depend on the pathology results and hormone markers (which can change from the primary) so it's too soon to say what you will experience. There are many systemic treatments, chemos, ADCs and all will depend on the pathology.
Surgical removal of mets btw is not yet standard of care though several people here have had it done. In breast cancer, we have no data on whether it actually leads to longer survival. That's great that your surgeon is willing to do it as many have to really fight for it if they want it.
Have you had full scans yet? Chest, abdomen, pelvis, head?
Best wishes
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Right, I was pretty sure the pathology decided the chemo or treatment, just wondering the options. My oncologist didn't even want to give me chemo last time. He thought the onca score and mammaprint scores weren't high enough, they were intermediate, and I opted for chemo anyways. I had TCHP and TC, 4 cycles and 2 cycles and HP for the full 17 weeks. There was a question as to the HER2 status and the tumor board overruled my oncologist's decision and I got TCHP after the first 2 cycles of TC.
Last week, I had a pet scan base of skull to mid thigh, on Friday morning, it showed no metabolic activity. I had the CT scan of chest abdomen and pelvis on Feb 22, Tuesday. The pelvic area showed a growth in a cyst that was there last June, now they characterize it as an enlarging fibroid tumor, as well as the 5 new lung nodules. they say is metastatic disease. My MO did the cancer marker tests on Tuesday morning as well, they are normal. He does them every 6 months. I do need a brain MRI, and will ask when I see my oncologist. I am due for one anyways it has been 2 years since the mass on my pituitary was found. I have an appointment to see him on Monday morning before my lung resection biopsy/surgery. I am happy for that. They are removing them because they can't do a bronchial biopsy or needle biopsy, so if they are in there anyways to get the biopsy, they might as well take them all out in their entirety. I am happy they are not chopping them up or poking holes in them like they did for my breast cancer 5 years ago. At the time, I was hoping to stop the spread, but I assume this is a mute point now, I just hope I can keep it out of my brain.
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I have had the biopsy done on all 3, 2 were about 1 cm and 1 was 6 mm in the left lung all are IDC. The plan is to remove the 3 in my right lung as well, this coming Wednesday. The brain MRI was clear, I am happy for that. The future plan is to do chemo, Navelbine and maybe immunotherapy. My MO thinks it will come back ER+ HER2-, but we are still waiting the pathology is not yet back and It will be at least another week for the PD-L1, immunotherapy test results. Does anyone know anything about these treatments? Do you lose your hair with Navelbine if given alone?
They did do the CT scan of chest abdomen and pelvis, as well as a pet scan and cancer markers. The strange thing is, it is biopsy proven IDC in my lungs, but the pet scan was negative and so were the cancer markers. I guess my metabolism is strange, maybe because I have been water fasting for over 5 years quite often and when I do eat, it is only keto, so no sugar, and I am on a growth hormone.
Currently, I am fasting until my surgery, I don't want to feed this cancer in my right lung. Lately, I eat only 4 days in a row, then fast for at least a week., but this time it will be 10 days. I will post my pathology when it comes back.
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Biopsies are the only real way to confirm cancer. I have a lung nodule that we think might be cancer but it's too small to say one way or other on the PET. And tumor markers are so unreliable they can't be depended on by themselves for diagnosis. They can be normal when you have cancer and they can be high when you don't.0
