mets to lung
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Hi JCSLibrarian,
I’m also sorry you find yourself here but agree that you need to remain optimistic. Things are changing so quickly and we’re seeing more and more women do well for extended periods of time. I made the mistake of looking at Dr. Google when I was rediagnosed and thought I would be lucky to get two years! My MO expects me to do well for a good long time. I’m still working full time and feeling pretty good all things considered.
The problem with comparisons is that there are variations in lung mets and, as Jaylea notes, generally there are no lung specific treatments. In my case there is no obvious mass in my lung. Instead I have mets in the pleural lining of the lung - a bit trickier to see. I presented with a cough and SOB due to pleural effusion in my right lung. I also have significant bone mets. A PleurX Catheter got rid of most of the fluid after six months but I still have some fluid remaining in my lung.
In terms of treatment, my MO started with Taxol given the burden of disease. It wasn’t effective in my case so we moved on to hormone treatment. As you can see from my details, I’ve burned through a number of treatments but am still doing pretty well, working full time.
Feel free to PM me if you have any specific questions. Hope the treatments knock it to the curb!
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thanks for bumping this - I was trying to help someone recently dx get connected here
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I'm fairly new here and I too have several mets to the lung. One is near the airway and one is impinging on my aorta. Im on Ibrance and Fulvestrant and finishing the first round in 4 days !! 😁 Nausea has been my primary issue and headache is secondary. I do have a chronic cough but that's been there for awhile. I'm nearing the end of my first round of treatment and waiting for liver lab results. Slight neutropenia of 3.7 and ANC is at a low normal. Thankful you're all here !!
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Ginny, welcome to the club no one wants to join. The first couple of rounds of Ibrance presented all kinds of weird SE's for me, but things settled down after that. I hope you get a good long run out of it. It takes time to really kick into gear, and hopefully when it does it will resolve your chronic cough. It certainly did with me. If you haven't already checked it out, there's a very active Ibrance thread. Best of luck to you, dear.
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Jaylea,
How is the Halaven going?
Hugs, Susan
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Grannax2,
I appreciate you bumping this thread. The treatment related threads don't address our lung specific symptoms and surgical possibilities.
Have any of you seen a lung oncologist? I once asked my oncologist to refer me to one because I thought they might know more about lung-specific surgical or other techniques used on people with lung cancer that might be effective for lung mets. She insisted they would have nothing to add. I wonder if that is true.
Hugs, Susan
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I am having a lumpectomy next week. While registering for the procedure, the nurse asked me if I had a pulmonologist. I answered no, why? She replied that I had a lung problem and might benefit from their knowledge. I plan on asking my MO why he has not suggested this specialist. I would not be too excited about more doctors appointments, but think this should be my option to choose
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Hi, Susan, I'm doing ok on Halaven. Biggest issues are fatigue and lack of appetite (what else is new?). But somehow I'm managing to keep my weight stable, and just rest as much as I need to. I haven't been scanned, so don't know if it's working yet. Are you still on Alpelisib trial? Hope you're doing well.
I'm not sure the Kaiser facility I'm at has a lung oncologist - it's never been discussed. Nor is a pulmonologist in my stable, but it does make sense.
Sadiesservant, great to see you. When I hear how well you're doing after seeing all the treatments you've been on, well, I'm just inspired.
Happy weekend, all.
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Your diagnosis was just a bit after mine Jaylea. Lots of treatments but also a lot of fine tuning! 😉
I am definitely ready for my vacation - six days and counting! Pretty achy - I think Faslodex is having its way with me and my back/hips are giving me heck. It’s just a staycation but I think a few weeks of puttering around the house at my own pace will do a world of good.
Hugs to all.
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Thank you Jaylea you’re encouragement is truly appreciated. I have 2 days,left but really struggling with the sporadic weakness which has filled most of my day, today. Not sure if I should call my onc but I know that my BP drops very low at times including today. I’m wondering if it’s more about low BP but the waves of weakness can leave me holding onto shopping carts and I find myself praying that I can get home safely. Did you have or do you have those same symptoms at times? It awful when it hits but I seem to come out of it in 10-15 minutes.
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Ginny, I don't recall that kind of weakness as a SE when I first started Ibrance, but I'm not surprised. I do remember that my labs were too low to start my next round, I had to wait an extra week. That is not uncommon, and when you think of it, low red cell counts could easily lead to fatigue. After a couple of cycles, things settled down. By all means, contact your MO. He/She will want to know how you're adapting to the meds. Hugs to you ~ JL
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GinnyO2. I have also experienced those waves of weakness, although I have blamed the fluid movement with hot flashes for mine--Faslodex related. I have salted peanuts stashed in my purse, and when I feel something starting I start eating peanuts, something I learned from someone else on these boards and she uses potato chips! I have also added more salt into my diet, and that has helped.
Regarding pulmonary, while I have no experience with a lung oncologist, I was referred to a pulmonologist for an EBUS procedure to confirm cancer in my hilar lymph nodes. After recovering from that procedure she did pulmonary function tests and a methacholine challenge test to see if my breathing was being impacted by either the lung nodules or the lymph nodes. Both tests were ridiculously normal, so sadly, I won't see her anymore (she was the best of the doctors). My shortness of breath is not lung related so she referred me to a cardiologist (I am in the midst of those tests). As others have noted, now that I have been on treatment for 6 weeks, my cough has gone away.
All the best!
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movingsoccermom,
So happy your cough has gone away! My cough comes and goes with my treatment efficacy. Cough gone, it's working. Cough came back, it's stopped working. Easier, cheaper and more accurate than a scan!
Hugs, Susan
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Hi All, and MovingSoccerMom and GinnyO2,
Yep, me too - Dizzy on Faslodex. I carry an India Snack Mix with me (salty garbanzo crisps, lentils, nuts) for a BP lift. Drinking water instead of tea is "better for me" - but I'm so fatigued and want caffeine!
Waves of Dizziness are now a concern for my driving. I'm too young to be this old! After meditation this morning, it finally hit me: "OH, I'm HERE!! in the Penultimate chapter (stage before twilight?)" What, did I miss the Two Good Years??!! Oops I ranted.
Lung Oncologist? 2 years ago, with 2 throat nodules and Lung/Lymph mets, when SOB/Chest pressure prevented me from breathing (and I started Letrozole/Zometa), I pushed for referrals to Pulmonologist and ENT/Ear Nose Throat MDs, to "R/O (rule-out)" other problems. They did all of their tests, and "Nothing". (It must be the cancer, right?).
Last month, 2-weeks after starting Faslodex, I was sent to the ER for SOB/Chest pressure; ONC RN was concerned about "Pulmonary Embolisms and Blot Clots SE of Faslodex", oh boy. Same thing, they did the Chest Xray and EKG for heart; All clear. ER Doc gave me a temporary Albuterol Inhaler, which helped alot. ONC said take 2x2x Baby Aspirin daily. Replacement Inhaler covered by insurance doesn't work, and ER Inhaler isn't covered in Insurance formulary... Oops I ranted again.
After this 27-year run with BC, my Inner 16-year old spirit is actually pretty happy and content, and I'm personally ready to "take the journey au natural"... But Hubby and I pretend that the Faslodex will somehow give us more time...(I don't think it will; and I feel crappy;)... 18+ more months until his retirement...
BCO Sisters, I am So Grateful to read everyone's words - I hardly ever have time to post, and always want to... Thank goodness we have each other, and we understand and cheer each other on. I'll close with a "Life Is Good" T-shirt slogan:
"Chocolate doesn't ask silly questions,Chocolate UNDERSTANDS". - Diane : )
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GraceDD,
Have lost two good friends to MBC in the last few weeks. Your words really touched me. Like you, I had two incidents with DCIS Stage 0 before becoming metastatic. It's been 19 years since my first diagnosis at 36. Five and a half years metastatic.
You do what you think is right for you and your family. There are a number of oral treatments that I have found to be very easy to tolerate, though everyone is different. You could add Ibrance to your Faslodex right now and it should improve your response. But since you don't feel good on Faslodex, you could give Xeloda a try.
Big hugs, Susan
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I know this thread is not very active but wanted to see if anyone else with lung mets have ever had a bit of blood in their sputum when they’ve coughed.
I have had a tiny bit show up in the morning when I cough first thing. Small amounts but still alarming. Been checked via CT for clots and there were none. I do have a small amount of pneumonitis in one lobe along the edge. Not sure cause as it’s away from any cancerous nodules.
My oncologist thought maybe I had an infection so I did anti biotics but nothing really changed after that stopped a week ago
Now my MO thinks that the blood could actually be from the largest tumor in my right upper lobe (2.5-2.9cm) 😔
Feeling a bit of a mess and just wondering if anyone else has dealt with similar. And whether things improved
as for treatment. I just stopped Ibrance after 20 cycles and moved to Verzenio.
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Ashlyn -- My wife is 7 months into her lung METS, and she hasn't had any blood in her sputum. She's on Ibrance/Letrozole and saw a little bit of shrinkage after her first scan. I'm sorry you're going through this, wish you luck on resolving the blood, and hope that Verzenio works for you.
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Ashlyn, I have not had any blood - my Mets are bigger than yours though , like 4×6 cm largest and they are everywhere
. Do not feel any abnormalities now that sob and cough gone ( they gone before I got to do any conventional treatment -I have done COC protocol and many supplements so may be to do with it) ..I suppose if tumour is at least partially in the blood vessel then it would cause blood in sputum- good luck with it - it is difficult even to say what constitutes good luch in our positions 😥. Hugs.
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BlMike & another one: thanks for the message. Hope you are managing well on your treatments.
Another one: so you have no symptoms with the size of your tumors? My cough could also be because I have mediastinum lymph nodes near my esophagus and airway. I don’t know if the main tumor is infiltrating blood vessels. All I know is it’s in the center of the lobe. It is distressing for sure
All the best to you.
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Ashlyn, my lung mets are small and I've not had any blood with cough. Sounds like you are on it with your MO, though it's got to be troubling to see. Best of luck running this issue down.
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indeed , I have no symptoms with this size of the tumours .. I had quite subtle sob and cough -but it started only a month before diagnosis while I would have had those tumours for years before ... yes I was told cough was due to the nodes as they are everywhere but symptoms have gone... One of the theories is that due to biopsy the node which was causing cough has been reduced in size and stopped causing it. Not sure what accounts for gone sob . There was no change from my first CT scan when I had symptoms to the one when I did not have them anymore. I hope there was some general reduction in everything not enough to detect on scans ( different machines different types of scans - CT and PET- different radiologist - difference too small to be detected but big enough to stop symptoms)... Another scan in 2 weeks - we shall see but now I am on chemo ...
May you have luck with Verzenio and I feel for you with both the cough and blood
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Ashlyn,
I’m sorry to hear about this latest development. I can’t be much help I’m afraid. I haven’t experienced any blood in my sputum even when I had pneumonia. However, my mets are in the pleural lining. I don’t have any obvious masses. I originally had a ton of fluid in my right lung which caused SOB and a persistent cough. That was alleviated by a PleurX Catheter which allowed for frequent draining. Ultimately the lung dried up with only pockets of loculated fluid. At this point the remaining effusion is chronic and, I suspect, I am now more susceptible to lung issues. (Dealing with a cough and lung irritation at the moment which I hope is not the fluid returning!)
It does sound like your MO is on it. Hopefully Verzenio will knock it back.
Pat.
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I haven't any blood either. Sorry to hear that you are dealing with that.
Had my 4cm tumor mass (lower right lung) radiated years ago. Still shows up in the scans but when I had it biopsied, they couldn't find any cancer cells. They must be dead or so few that they couldn't find any live cancer cells despite having 7 samples taken. I have a bunch of small ones in the pleura and two small ones near the middle of my chest which apparently cannot be radiated. Seeing steady progression in the number of tumors in my pleura and slight growth in the mediastinal ones. Hoping Abraxane+Keytruda+Celebrex will stop the progression. Breathing is good so I'm not super worried.
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Hello everyone. I am looking for guidance regarding relief from my cough. I have had a cough for months which led to the imaging which found my lung mets. I am so tired of coughing. I was diagnosed 9/30/2019 and started Faslodex and Lupron the same day. I started Verzenio on 10/6/2019. I have my next Faslodex and Lupron shots this coming Monday 11/25/2019. This will be my last Lupron shot as I will be having my ovaries removed on 12/11/2019. My cough had greatly improved at the end of October and wasn't keeping me up at night anymore and didn't have to try to sleep sitting up at that time. Shortly after that my cough got worse again and I am now back to coughing so much at night that I am not getting much sleep and have to try to sleep sitting up (still not sleeping). I think I got a cold because I know stuff is going around work and my daughter was sick at home too. I had called my oncologist last week and he said if I was coughing up colored sputum or running a fever he would call in an antibiotic - that would be a no to both questions. I am just so, so tired of coughing. I will sometimes cough so hard I gag. There is no phlegm. I am taking Tessalon Perls, however not really seeing relief from them. I tried the old Vicks on the bottom of my feet and on my chest with no relief. Any suggestions?
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Christy, the Tessalon Perls did nothing for my cough, but a friend got relief by upping the dosage. So you may want to see if that's an option. One thing that worked for me was a prescription for Robitussen with codeine. I would take it at night and the codeine would relax my bronchial passages enough to get some sleep. Good luck to you.
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Hi Christy,
Do you have fluid in your lung? I don't have experience with lung lesions - I had malignant pleural effusion but given your description (having to sleep sitting up) it sounds like that might be an issue for you as well. If yes, they can drain the lung to give you relief. Are you short of breath? At it's worst I could barely make it to the end of the driveway without stopping to rest.
Hope you can find something to calm the cough.
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Christy, that’s just so annoying and very exhausting! You don’t mention if scans show fluid on your lung? As Sadie says, that’s a big factor. I had a big pleural effusion drained and lucky enough that it hasn’t returned so far. I recognise the symptoms but your’s seem to be dragging on somewhat. Do you have pain/ discomfort when not coughing?I certainly did and worry about the nodes in my lungs, which showed up. Were you given an idea of how extensive your Mets were? And what they could do about them?
I developed a cough, but only for a few weeks - came to the conclusion it was a habit, I expected to cough, so I coughed..a lot...lol. Managed to work my way slowly out of it, mainly through breathing and relaxation exercises. Try the Calm App.
Not suggesting that’s like you of course as it’s very distressing. Hope you get to the bottom of it.
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Christy,
Early on, I had a bad cough and my MO thought it might be a lung infection, unrelated to my lung mets. If you quite suddenly developed a bad cough, it might be that. I took antibiotics and stopped coughing right away.
I also agree with Jaylea. Robitussin with Codeine is amazing. The Codeine knocked me right out.
Hugs, Susanj
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Hi Christy,
I hope you are seeing some cough relief based on the above suggestions! My cough was annoying until after a bronchoscopy, when it became horrific. It took about 2.5 months after I started Ibrance/Faslodex and then it gradually went away.
Good luck!!
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Sorry I am so late in responding. I have not been told I have fluid in my lungs. I am not experiencing shortness of breath. I need to find relief for my cough. Some days it seems to be worse than others. I will be discussing with my onc at my next appointment. Next week I go in to have my ovaries removed. If I don't see some improvement in the next week or so I might call and see if I can speak to someone. Unfortunately I can't handle codeine. My primary gave me a low dose prescription for Ativan to help me sleep and most days that seems to help. I find that sometimes I need to sleep sitting up though because otherwise I start really coughing bad. Some days are worse than others.
Karen, I know that my CT scan showed probably at least 10 different nodes, however only one of them lit up on the PET scan. My oncologist said that at least one other one was but the rest were too small to examine further. Even the node that lit up was too small to biopsy. My last lab work a couple of weeks ago showed that my tumor markers have begun to decrease. My tumor markers seems to be pretty accurate for me. I'll be curious what my oncologist has to say at my next appointment which will be 3 months since diagnosis.
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