mets to lung
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Hello, I want to introduce myself here. I was dx'ed with bone mets in 2013, lung mets in 2015 then liver mets in 2016. With treatments, I have been doing well, while dealing with bone pain, limping and fatigue, and of course progression. I was on Halaven since Aug 2016, which stopped working early Dec. Hormonal treatments alone did not work for me at all.
Now I have shortness of breath and coughing, which I am finding very scary. Any more than a few steps get me out of breath!! Driving my kids after school has been my steady job but I am finding it hard to get to the garage now. I am scared that I may be starting the down hill while praying that this is another bump. I started Faslodex and Ibrance last week. The chest x-ray showed small amount of fluid on the left. I am seeing my MO and palliative doctor next week, but in the mean time I wanted to check in with the wise ladies here and ask how you are managing shortness of breath.
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Sadiesservant: They can get the er/pr/her2 data from your pleural fluid, but not some of the genetic stuff. They probably won't worry about that at this time anyway since they know that you have mets.
hansaim: It sounds like you may have a pleural effusion that is causing your shortness of breath and if so, there is a way they can alleviate the symptoms by removing the fluid. You may wish to get a pulmonologist consult.
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Hansaim: I am having the same problem. My MO wants me to see a lung specialist as well. I have young kids and I have always been very active but not anymore. I am on faslodex and ibrance but seems like I will be moving to IV chemotherapy that the SE are not so harsh.
Zi
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Hi hansain and the Ziz - I have been getting thorocentisis (draining) of my left lung every 4-6 weeks since being diagnosed IV last Xmas. The mets are in my left pleura, so only my left lung fills with fluid. You will feel better and breathe better when the fluid is removed. The procedure does not hurt - I go to UCLA. Sadies - the fluid from your lung has likely already been classified as ER/PR (since they know it contains cancer cells) - please ask if it is positive and what percentage. That will help in planning your next meds.
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Thanks Cive and Claire,
Today is finally D Day when I go to the oncologist to find out what's next. I must admit that I am anxious although I know I will be in a better place once we have a game plan. But there are some worrying signs that my liver is not coping well (elevated markers, nausea, gas pains and very light coloured stools - sorry... TMI). I originally thought that the oncologist would put me on hormone therapy first but in reviewing protocols think he might opt for chemo given the visceral involvement and the fact that it seems to be progressing.
Just a few more hours and I will know for sure. Thank you all for providing some hope. It's hard to stay positive when you feel crappy, can't breathe and keep seeing stats indicating average survival of two years for mets. But I refuse to give in that easily. Not done yet!
Pat
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Hi Everyone,
Well, I didn't think I would be in a celebratory mood after my appointment with the oncologist today but I'm feeling pretty relieved. No sign of cancer in my liver or bones (couple of small spots but he is not concerned). The cancer appears to be only in the pleural and in the lymph nodes in the chest.
Given that I am so many years out, he feels I will respond well to hormone treatment (ER+/PR+ but HER-) and have all options open to me. I wondered about Tamoxifen as I have already completed five years but no problem since it's been so long.
He is recommending Taxol to start and a catheter to drain the fluid as I have so many symptoms. It takes awhile for the hormone therapy to kick in. But then we will switch to the hormone therapy and he feels I will do well for many years. Hooray!
Thank you again for your support and encouragement. While it's still MBC, what a relief!
Pat
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That's just wonderful news Sadiesservant! So very pleased for you. And Sadie will be happy her walks will be back on track very soon
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That's great news sadiesservant! My current treatment is just an AI - Femara. It took almost a year, but I was able to get my catheters out and haven't had breathing problems since they came out.
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Wow, almost a year? Perhaps with chemo it will go quicker? I think he is leaning towards Tamoxifen first. I don't have complete records (plan to update my files soon) but I switched AI part way last time. The first one, which I was on for about a year, made me seriously cranky! It was like having PMS for a year. LOL.
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Hi Sadies - Your onc giving you Taxol should improve you faster, and then switch you to an AI for long term. Rooting for you! I could not go back on Taxol, as I became allergic to Taxotere during initial chemo a few years ago. Hence why I started with Ibrance+fas and still doing well 14 rounds later.
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It was almost a year because I had a bi-lateral pleural effusion. So they put a catheter in the worse side first and when they took that one out, they put one in the other side. After a while draining them was just something I did every other day like brushing my teeth. I live alone if you don't count the cat and dog, so I drained them myself. They did send a home health aid at first but I fired them after one of them got too crazy with her scissors and cut the valve off. The first instruction on draining the catheter I had said NO Scissors!
In any case it was worth a year to get my breathing back in shape. I'm even able to run again. I opted out of Ibrance because of the side effects and the length of time to progression was less than a year. Of course that is a statistic and some will get longer.
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Ha! I'm always amazed at how "not helpful" some of the professionals can be. My mom had her knee replaced last September and here they kick them out of the hospital after two days. I hired someone through a home care agency to look after her on one of my morefrenetic work days. She was a little bit of a thing who had no idea how to help her get up and down. She didn't know to use the cryo machine for her knee, how to give her the anticoagulant injection, etc. It cost a fortune and all she did was try to get my mom to play cards all day. Trust me, she was not in the mood! 😉
My mother and I live together as I'm single and she is a widow but I'm pretty self sufficient so will likely do the draining. Mom was one of my big worries with my diagnosis. She will be 86 in a couple of months and I'm her only support. Thankfully it sounds like I don't need to stress about how she will cope when I wake up in the wee hours...
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Do let the Dr (pulmonologist?) that is putting it in know that you are planning on doing the draining yourself. That way they can place it so it is easy for you to reach. When do you get it put in, do you know yet? I'd recommend that you request that they give you pain pills for the first couple of days. It would hurt maybe a 6 or 7 the first couple of days every time I moved. I was fine if I didn't move, but that's pretty much an impossibility if you have pets, Sadiesservant!
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Hi ladies;
I hope we are all doing at least fine.
My MO is out of town and I was having a very hard time breathing and an awful cough that almost knocked me out so I went to see another MO and sheprescribed 5 days of steroids. I took one yesterday and I felt better.
CT scan today and blood tests. I see my MO on Sunday and he will let me know what is going on with me and probably change tx.
Ziz
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theziz, I just took my first steroid pill (dexamethasone 4mg) due to shortness of breath today. I've been feeling really bad even with the oxygen. I think the steroid is kicking in now. All the best with your scan and blood tests.
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Theziz and hansaim: I ended up taking steroids three times before they actually figured out the problem was my pleural effusion. I know they gave me a lot of energy, hope they help both of you too.
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I've had a small left effusion since summer. I did not have any symptoms from it. The short of breath just started in the last few weeks. CT showed no clots, which is good. Just waiting for Ibrance and Faslodex to work. I am just finishing up the 1st cycle, though...
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Hansaim, it's interesting that you have shortness of breath with only a small amount of effusion. I believe that often there are no symptoms, particularly with a small effusion. I suspect the fluid in my right lung had been slowly increasing for some time. I found out I had fluid when a chest X-ray was ordered to investigate a persistent cough. I was not slightly concerned about mets. As far as I was concerned I had the same stupid virus that was making the rounds. But then the fluid kept increasing. I had 1.5 litres taken off on December 28th and yesterday they drained 3 litres off. (Not something I want to repeat anytime soon. It was quite painful for something that is likely to bring only short term relief).
Like you, I'm hoping the drugs will start to do their magic. Had my first Taxol treatment today and feeling pretty good. Of course, I can also breathe and the coughing is much less.
Sending you good thoughts for the Faslodex and Lbrance. Pa
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The mets in the lungs are making it difficult for oxygen to get through. I wish I were on an IV chemo as it would work faster, I think. I had Abraxane (very similar to Taxol) last year, and it did wonders to my lung mets. All the best, Sadie.
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How are you doing hansaim? Hope the breathing is getter bette
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Wisdo.com contacted me to do an interview about metastatic breast cancer and they made a bunch of short videos from the footage. If anyone is interested, they can be found here: https://wisdo.com/profile/susan-kobayashi. Hope you find them helpful!
Hugs, Susan
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Thanks for the videos, Susan. They are great.
My breathing is not good yet, especially this is my week off of Ibrance. I get to start again on Monday and can't wait. My palliative doctor put me on a steroid, which helps with breathing but keeps me awake at night. A home care nurse is coming by tomorrow and I think I will ask for some sleep aids.
Hope everyone is breathing easy
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I hope your breathing improves soon hansaim.
While I had a lot of pain from the process of draining the lung and continued to have the cough and discomfort, I am so happy that the shortness of breath has been dealt with, at least on the short term. I have an appointment with a cardiothoracic surgeon next Friday to decide if I am a candidate for the PleurX Catheter. Apparently my MO feels that we can judge if the chemo is working by the amount of fluid coming out of the catheter. Let's see how it goes!
Take good care of yourself.
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Thanks for the link to your videos Susan. Very well said. You expressed a lot of my thoughts exactly. I hope others looking for a positive view point will find them helpful.
Faith (in the future)
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Hi lung mets ladies;
I wish we all would have a nice, smoothie and natural breath.
Yesterday they took a lot of fluids out of my right lung and the relief is very minimal. I still Have cough and shortness of breath when I move fast. They biopsied the fluid so let's hope for no changing on type of breast cancer.
I've always had faith in God but I think that my faith is starting to fade away.I never got a break.
Ziz
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Thanks for taking a look Hansaim and Faith!
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I almost (but not quite) feel guilty because I'm breathing well, even able to run a little.
Nice videos Susan!
Sadiesservant: That's what I had was Pleurx catheters. As well as telling if the amount of fluid is diminishing, you may like me have a spontaneous pleurodesis. That is where the two membranes (pleura) stick together so fluid isn't in there.
theziz: Maybe you should be a candidate for a catheter. There was someone here a few months ago that was on Ibrance but it took well over 6 months for her to get relief from her pleural effusion. You may have fluid on your right lung as well as your left so maybe that's why you didn't get the relief you were hoping for. God has nothing to do with what is happening to you, it's just plain bad luck. I know, it's not fair but if your faith is important to you, I wouldn't want you to lose it.
To all the lung ladies.0 -
Thanks Cive.
When they called me about the consult I was a bit taken aback as they would then need to schedule the catheter insert. I wondered if I would need it once it was finally in. I feel pretty good now, still short of breath if I exert myself but that could just be a sign that I am in lousy shape. I puff a bit going up hill when walking the dog but not to the extent I did a month ago.
As I may have mentioned, after the first thoracentesis I had some relief from the cough but not this time. I find that I cough when I lay down, get up from bed and change positions through the night. I guess it means the fluid is still in there.
Did you have any issues with nausea? This is the most troubling symptom for me as every morning I feel super nauseous. It seems to lesson throughout the day. I don't think it is related to the chemo as I started having problems with nausea back in December when the lung was starting to fill. I'm eating but at times it's a bit challenging. And the big tragedy is that wine tastes terrible!
It will be interesting to see what the surgeon says next week. I think I was overly optimistic about how fast this would resolve itself. I don't know where I got the idea that my MO was recommending 4 cycles of Taxol. Must have been wishful thinking. I received my copies of the reports yesterday and no... he is recommending 6 cycles. Bummer....
Thanks for helping all of us newbies through this. It's wonderful to have the support of those that have gone before!
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Sadie, 6 cycles of Taxol seem reasonable. Hope that you would feel the difference after each cycle. With my last chemo, I started to feel better after 2 cycles.
I am out of breath; on home oxygen and on a wheel chair at the moment. Just a few steps get me panting. I have never had this until 3 weeks ago, it's very new and scary and all. It just happened so quickly. Doctors do not seem to worry about built up fluid in my case.
Thank you for being here, everyone.
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You probably will still need it if they get it in soon. It's a fairly simple procedure, takes maybe an hour. Yes, I definitely noticed a difference between laying down and standing. The fluid moves around according to how you are positioned. Before I got my catheter in, I was unable to lay down without being short of breath and coughing, so I slept in the recliner with my head raised a little. I was never nauseous but I didn't ever have as much fluid as you did. I can see how that might happen since as they say "water seeks it own level" which applies to all liquids, so sitting up and standing up means it changes position. Also the fluid can be affecting other things that are in the same general vicinity including your stomach, everything has to change position to accommodate it and of course exactly where it is changes with your position. Don't know what to tell you about the wine, I never had that problem, maybe you need a different kind of wine?
Hansaim: you might get a pulse oximeter which tells you your oxygen level, they are fairly inexpensive - I think about $20 on Amazon. Normal is 98-100, if it gets below 90, you are starving your body of oxygen and you should definitely tell your doctor because it affects all of your organs.
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