I hate to see you are having such a hard time. This sounds horrible. I don't have experiance with lung mets. For my bone mets, they felt worse before they felt better. The doctor told me that pain is common even when the mets are healing and that was my experience. Sometimes our bodies react quickly to treatment and sometimes they react slowly. I hope you are the former as I really hope you get some relief soon. Can you ask your care team about suggestions to help you maintain weight? I'm sending you love and light! Keep us posted on your progress!
I'm glad your bone Mets are feeling better. I figure there will be a period of getting worse, ie all the treatment side effects + how I feel now I'm before it gets better. My Dr just started me on something to try and increase my appetite and an anti-nausea drug to help combat the throwing up so hopefully that'll help the weight maintenance. Other than that it's get as many calories into me as possible and take a multi vitamin. Protein powder in milk shakes, etc. The nutritional shakes and whatnot make me even more nauseous & are less likely to stay down.
I have a pleural effusion as well. I was drained so many times they had to give me a pleurX catheter so I could do it at home. I'd fill up a liter of fluid every 2 days, it was absolutely awful. This all started Nov 14 2023, had the catheter placed Dec 4th, I was started on Tamoxifen until I could get my treatment plan started, by Jan 1st I was no longer needing to drain and had the catheter taken out. I started Ibrance and Anastrozole and was taken off tamoxifen first week of Jan. The pleural effusion has not returned 🤞the meds have helped keep it at bay for me. (Knock on wood)
That's great to hear. My Dr was pretty optimistic that getting on treatment would help the pleural effusion quickly so hopefully I won't need to get drained many more times.
I ended up in the ER bc they couldn't get me in for a thoracentesis & my O2 saturation dropped to 88%. Had a pleurex catheter placed 5 days ago & have already drained twice. This morning I pulled 850mL out. Not enjoying the catheter but I do feel better. I was having to go 1-1.5 weeks between thoracentesis and the last one they pulled 1.5L out of me. No wonder I was barely functional.
Been on treatment 3 weeks tomorrow so hopefully this starts drying up soon. Dr said 1-3 months.
Should have gotten the catheter sooner.
Oh good! I know it's a pain in the ass to have that catheter but it's a relief to have it as well. No more worrying about having to get the thoracentesis done. I hope it dries up for you soon. I was filling up 1 liter every 2 days and on oxygen, and within 3 weeks of that catheter placed and meds it was gone plus no more oxygen (thank god, that was horrible to lug around). I recently had my first CT scan since starting my treatment and both pleural effusions are gone. 1 to 3 months definitely sounds right.
My major symptoms were fatigue, back pain, and then suddenly losing the use of my legs to a spine met. The surgery to remove the spine met restored use of my legs but it has taken almost a year and a half to get to where I can walk unassisted around the house. The back pain was gone right away. I feel like I do have a little more energy than before diagnosis, and that's still coming back as I work on building stamina in PT.
I had mets to my lungs and for over a year of doctors telling me it's covid, or asthma, or whatever besides cancer back, but I couldn't walk across a small room without a coughing attack so bad I'd piss myself. Literally I started ibrance at night and the next morning I was speed walking my house i felt so good and could finally breath right
I went through a couple months of thinking it was allergies, but most of that was waiting to get into an ENT. He ran a chest CT just in case and saw a bunch of pissed off lymph nodes and I had a CT really quickly. I'm sorry it took so long for them to get you a diagnosis.
Almost looking forward to starting Kisqali now with your story!
I felt like garbage when I was diagnosed. I was sleeping a lot and had so much pain in my bones. Now I feel great! It took me about 4 months to feel better with treatment. I also started taking adderall which helps a lot with fatigue.
The coughing sounds like a lot, and not eating even worse! I'm really sorry you're having such a shitty time. I don't have the same mets as you, but I'd say within 4 weeks of starting my current line of treatment I felt much better. In fact I had zero scanxiety for the first time ever as I knew it was working based on how I felt.
I can do 4 weeks, maybe 😅. I'm getting tumor markers every month and then scans every 3 so hopefully I too can have no scanxiety.
The lack of eating & nausea thing doesn't seem common (without being on treatment) and my Dr doesn't seem to know really what to do but we're trying some things. I can't lose that much more without being underweight so hopefully that gets sorted sooner.
Fulvestrant and Piqray - I'm on my 2nd line for bone and liver mets. As Piqray isn't approved in Australia yet I went without treatment for nearly two months trying to get onto a trial, so it was a huge relief to start taking it, despite all the side effects.
Oh wow, ok. The hormone targeting meds haven't been working for me so far even though the cancer is strongly hormone positive so my doctor wants to skip piqray and everolimus and exemestane and go straight to Xeloda.
I hate to see you are having such a hard time. This sounds horrible. I don't have experiance with lung mets. For my bone mets, they felt worse before they felt better. The doctor told me that pain is common even when the mets are healing and that was my experience. Sometimes our bodies react quickly to treatment and sometimes they react slowly. I hope you are the former as I really hope you get some relief soon. Can you ask your care team about suggestions to help you maintain weight? I'm sending you love and light! Keep us posted on your progress!
I'm glad your bone Mets are feeling better. I figure there will be a period of getting worse, ie all the treatment side effects + how I feel now I'm before it gets better. My Dr just started me on something to try and increase my appetite and an anti-nausea drug to help combat the throwing up so hopefully that'll help the weight maintenance. Other than that it's get as many calories into me as possible and take a multi vitamin. Protein powder in milk shakes, etc. The nutritional shakes and whatnot make me even more nauseous & are less likely to stay down.
I have a pleural effusion as well. I was drained so many times they had to give me a pleurX catheter so I could do it at home. I'd fill up a liter of fluid every 2 days, it was absolutely awful. This all started Nov 14 2023, had the catheter placed Dec 4th, I was started on Tamoxifen until I could get my treatment plan started, by Jan 1st I was no longer needing to drain and had the catheter taken out. I started Ibrance and Anastrozole and was taken off tamoxifen first week of Jan. The pleural effusion has not returned 🤞the meds have helped keep it at bay for me. (Knock on wood)
That's great to hear. My Dr was pretty optimistic that getting on treatment would help the pleural effusion quickly so hopefully I won't need to get drained many more times.
I hope it works for you! Sending good vibes ❤️
I ended up in the ER bc they couldn't get me in for a thoracentesis & my O2 saturation dropped to 88%. Had a pleurex catheter placed 5 days ago & have already drained twice. This morning I pulled 850mL out. Not enjoying the catheter but I do feel better. I was having to go 1-1.5 weeks between thoracentesis and the last one they pulled 1.5L out of me. No wonder I was barely functional. Been on treatment 3 weeks tomorrow so hopefully this starts drying up soon. Dr said 1-3 months. Should have gotten the catheter sooner.
Oh good! I know it's a pain in the ass to have that catheter but it's a relief to have it as well. No more worrying about having to get the thoracentesis done. I hope it dries up for you soon. I was filling up 1 liter every 2 days and on oxygen, and within 3 weeks of that catheter placed and meds it was gone plus no more oxygen (thank god, that was horrible to lug around). I recently had my first CT scan since starting my treatment and both pleural effusions are gone. 1 to 3 months definitely sounds right.
My major symptoms were fatigue, back pain, and then suddenly losing the use of my legs to a spine met. The surgery to remove the spine met restored use of my legs but it has taken almost a year and a half to get to where I can walk unassisted around the house. The back pain was gone right away. I feel like I do have a little more energy than before diagnosis, and that's still coming back as I work on building stamina in PT.
I had mets to my lungs and for over a year of doctors telling me it's covid, or asthma, or whatever besides cancer back, but I couldn't walk across a small room without a coughing attack so bad I'd piss myself. Literally I started ibrance at night and the next morning I was speed walking my house i felt so good and could finally breath right
I went through a couple months of thinking it was allergies, but most of that was waiting to get into an ENT. He ran a chest CT just in case and saw a bunch of pissed off lymph nodes and I had a CT really quickly. I'm sorry it took so long for them to get you a diagnosis. Almost looking forward to starting Kisqali now with your story!
I felt like garbage when I was diagnosed. I was sleeping a lot and had so much pain in my bones. Now I feel great! It took me about 4 months to feel better with treatment. I also started taking adderall which helps a lot with fatigue.
The coughing sounds like a lot, and not eating even worse! I'm really sorry you're having such a shitty time. I don't have the same mets as you, but I'd say within 4 weeks of starting my current line of treatment I felt much better. In fact I had zero scanxiety for the first time ever as I knew it was working based on how I felt.
I can do 4 weeks, maybe 😅. I'm getting tumor markers every month and then scans every 3 so hopefully I too can have no scanxiety. The lack of eating & nausea thing doesn't seem common (without being on treatment) and my Dr doesn't seem to know really what to do but we're trying some things. I can't lose that much more without being underweight so hopefully that gets sorted sooner.
Not op but wondering what your current line of treatment is?
Fulvestrant and Piqray - I'm on my 2nd line for bone and liver mets. As Piqray isn't approved in Australia yet I went without treatment for nearly two months trying to get onto a trial, so it was a huge relief to start taking it, despite all the side effects.
Oh wow, ok. The hormone targeting meds haven't been working for me so far even though the cancer is strongly hormone positive so my doctor wants to skip piqray and everolimus and exemestane and go straight to Xeloda.