mets to lung
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Ladies - I had my left lung drained at UCLA last week - lowest amount of fluid in one year - 300cc. That means the Ibrance + faslodex is working. For any of you that are ER+/PR=/HER-, please consider this combo. (()) Hansaim - what are you taking now - your profile doesn't indicate your meds. Please feel better!
Claire
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Thanks for letting us know lalady, that's good information to have in case we need it. I'm so happy it's working for you. I hope your mouth is completely healed of that pesky jaw met and sores after all those awful rads.
Have a great weekend everyone.
Faith (in the future)
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Yes, thank you for the info lalady. I'm not sure they offer Ibrance here at this point. It has only recently been approved in Canada and if I understand correctly they are still looking for additional clinical evidence. However, I believe that my MO wants to put me back on Arimidex as a first line hormonal treatment. If that doesn't work he then wants to try Faslodex and at that point hopefully the combination with Ibrance will be an option.
It's challenging working through the bureaucracy of our individual jurisdictions at times but I do have a great MO. One of his areas of research is looking at ways to extend the effectiveness of hormonal treatments. I feel like I am in good hands.
Hopefully we will all be breathing easy soon.
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I have a home care nurse who comes by twice a week now. The oxygen supply is at 98% as long as I do not move too much! As I am not moving, I have no appetite and weight is dropping, which is a very unusual problem for me. Any suggestions? The nurse says Ensure or Boost but they seem too sweet.
I am on Ibrance + Faslodex. Hormonals alone do not work for me but I had some success with Faslodex and Afinitor. Starting my 2nd cycle on Monday.
I forgot how to update the profile, it seems complicated!!
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lalady: Glad to hear that the Ibrance/Faslodex combination is working for you. I think you are the one that I am talking about who took at least 6 months to get relief from your effusion from the drugs. I recommend a catheter especially for people like me who live alone and have a dog to walk. I got relief immediately after having my catheter installed. And while it took almost a year for both sides, I had a spontaneous pleurodesis in both lungs which means it's not coming back. I have had none of the pain and remaining shortness of breath others who have had a surgical pleurodesis experienced. I opted out of Ibrance because of my age (67), side effects, and the cost of treatment.
Hansaim: The only thing I can suggest other than Ensure and Boost is one of the protein shakes that weight lifters use. There are a few that have a fair amount of calories, a great deal of protein, and aren't that sweet. I hope the Ibrance works for you more quickly than it did for lalady. I didn't really have a choice of not moving, there is the dog, the cat, and I live on the second floor. To update your profile, you go to your profile and edit the information there. If for instance you are changing a treatment, just redo the whole treatment shown adding the additional information.
saidiessservant: Ibrance has been approved in Canada, but I don't know if it has been approved for use with faslodex as it has here in the states. Did Femara quit working for you?
I am breathing well, even running! Air to all, I wish I could pass some along.
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Hi Cive, yes it was me that took about 6 mos to respond to Ibrance + Faslodex, and by August my TMs were only 38! I had monthly lung drains during that time. The jaw met responded to 3 weeks of rads over Xmas and is now gone.
Again, I encourage all of you ER+/PR+/HER- ladies to look into Ibrance. Hansaim - get some protein drinks in you - even a milkshake! I had trouble swallowing with rads to my jaw and lost 7 lbs. Anything liquid like Ensure can help, plus any fav foods. Sadie - Arimidex only limits estrogen production and it looks like you were on it in 2007, can your onc consider adding faslodex too? Just a thought. I am on all 3 with no lung progression. (()) Claire
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Hi All,
Yes, I was on both Femara and Arimidex during my adjuvant treatment. I switched from Femara to Arimidex due to side effects (the Femara made me super irritable - flew off the handle at the drop of a hat). My MO wants to start easy and then keep adding to the arsenal as we go. The fact that I was in remission for so many years is a strong indicator that I will respond well to the hormonal treatments.
We chose to start with Taxol given my current disease load. I'm not surprised that it took six months to get the effusion under control Claire. From what I understand, hormone therapy is slower to kick in and so it's probably tougher to get the lung symptoms under control.
We're in similar situations Cive. While I am now dreading the afternoon walk (starting to experience SOB with exertion again) my dog doesn't get it. She's less than 5 years old and needs her exercise. While friends have offered to help out, it's always a bit challenging to arrange things on the spur of the moment. I can't wait to see the surgeon next week. Hope he can get me scheduled for the catheter soon!
Hansaim, I had a bit of trouble posting my treatments as some things didn't show up even though I edited them multiple times. It turned out that for some reason a few of my treatments were set as private? Not sure how that happened but once I corrected this all was well.
Thanks for the advice on the treatments. I don't see my MO until after my third chemotherapy treatment (our Cancer Agency has a GP trained in oncology that supports the oncologists) at which point I am sure we will discuss hormone therapy options in more detail. I also hope to get a sense of how long he expects me to respond to the treatment. While I know he does not have a crystal ball, I have no sense of how long it typically takes for the hormone therapies to stop working. As you can imagine, with this recent diagnosis I am grappling with planning for the future. At 54, I want to keep working but also want to ensure that I am able to have some good "work free" years with the ability to travel, play golf and enjoy the time I have. We all have this idea of working to 65 and then enjoying an idyllic retirement but apparently I might need to rethink my schedule...
Pat
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Hansaim,
Have you tried eating nuts? They are very high in calories. I buy the organic raw ones and roast them in the toaster oven. My Chinese medicine doctor always recommends that I eat walnuts.
Also, to be sure that I got nutrients, I used to make Rebecca Katz's Magic Mineral Broth. After whole brain radiation sometimes that was all I felt like eating. You can find the recipe on line here: Magic Mineral Broth Recipe. It's easy to make and chock full of good things. There are a lot of ingredients but you don't have to peel or dice anything, just wash it, cut it in half or thirds, add water and boil. I use it as a base for minestrone but you can also just drink it as a clear broth. I still make it often when I'm feeling not so great.
I would try to avoid drinking Ensure. It is full of sugar and nasty-sounding chemicals. Tastes bad too.
Hugs, Susan
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I also was in remission for a lot of years (11) before the lung problem showed up and had not taken any hormonals. I unfortunately lost my job during the first go round, so was without health insurance for 10 years. Just the femara reduced my TMs by more 50% in less than two months and by more than 80% after about 6 months. Like Pat, my lungs filled up in a week and since I'm on a blood thinner, I had to stop taking my warfarin for five days before a thoracentesis. Going off/on blood thinners really increases the chance of having a stroke. They actually put me in the hospital for three days when they did the first thoracentesis so they could load me up with vitamin K. As of now, almost two years after the sob started, I've had no progression. My MO is moving me to yearly CT scans with blood work every other month. His prognosis when we first started this was that I should be good for the life of my dog who is about six now. Coach was a rescue so I don't know exactly how old he is. I'm on Xgeva every other month (soon to be moved to every 3 months) for my bone mets which are all sclerotic.
Claire; I hope the Ibrance keeps working for you without too many side effects. 300 ML of fluid in a month is nothing! Are you back close to your old normal?
Pat; you'll be so thrilled when you get your catheter and can walk the dog without getting sob, it will become your favorite time of day. Border collies tend to be high energy dogs, so I'm sure Sadie will be really thrilled also.
Susan spot on with your recommendations for Hansaim. Hope she can find so relief soon.
Air to all!
Judi
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Hi all, looks like I will be joining this thread. Several nodules were found on both lungs, two of which are probably mets. I'd like know how you all were dx'd with lung mets and what, if any, symptoms you had?
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Hi LindaE54,
My diagnosis is pretty recent. I picked up a bug on a business trip at the end of October and could not shake the cough. After almost a month I went to my GP who ordered a chest x-ray. This showed some fluid in my right lung. At that point I wasn't panicking but the cough was getting worse, particularly when I lay down or shifted position through the night. By Christmas I was experiencing shortness of breath if I had even slight exertion.
To make a long story short, CT scan showed fluid was increasing and the biopsy from the thoracentesis came back positive for BC. I have had a second thoracentesis but the fluid, and shortness of breath, keeps increasing. Now waiting for a consult with a surgeon to see if I can have a catheter inserted so that I can drain the darn thing.
I am not sure if I have any nodules in my lung (it is in the pleural lining) as the view was obscured with all that fluid. You may not have any symptoms, particularly if treatment knocks it back.
Pat
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I had lots of coughing and thought it was because of my terrible allergies. A new allergist suggested a chest X-ray which showed a lung tumor and lymph node involvement. A biopsy proved positive for my breast cancer which had reared its ugly head again after 25 years. I had lots of coughing and had lost weight, I was also short of breath more than usual. I was never told I had fluid in my lungs but from reading of everyone's symptoms I think I must have had some fluid. My MO started me on Ibrance and letrozole and gave me a strong cough medicine with codein to control the cough. This stopped most of my cough and shrunk the tumor and lymph nodes shown by the PET scan after the first 4 months. Another scan 4 months later showed a lung infection which cleared up with antibiotics. I have always had normal tumor markers except for a couple of months with a slight rise. Things are stable now as far as I know and I'm on my 14th round of Ibrance. Next scan is in April. I still cough some but believe it's related to my ongoing allergies. I also have cardiomyopathy which causes shortness of breath.. All in all, I think I'm doing well and I pray the Ibrance keeps working for all of us a long time
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Thank you Pat and Faith for responding. I'm still waiting for MO to interpret the results of the written report I got yesterday. I recently had a bug and coughed so much. I now have a very small residual cough and wheezing at night but of course don't know if the nodules are causing this. I'm told I lost a bit of weight but I don't really feel it, I sure can loose a few. Report says no pleural effusion. I know lung nodules can be benign but weird that they all pop up at the same time. There is some new node involvement as well just like you Faith. And new bone mets on sternum. Anyway, I will just have to wait what MO has to say and hope for the best. Thanks again and wishing you the very best.
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Linda; replied to you on the bone mets thread. Like faith and sadie, I had a pleural effusion and a swollen window lymph node that shrank after I had a catheter installed to drain the effusion. Actually the first symptom I had was wheezing at night about a year before I was diagnosed. I've done really well for the last year with the effusion taken care of, but my TMs doubled this month. I expect they'll just change AIs but I don't see them until I get my Xgeva at the end of the month.
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Cive - so happy to hear you're doing well. My breast TM doubled since Oct. First time they increased since I started tx 3 years ago.
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Linda, did they switch your hormonal? I've been on Femara for a year and a half and this is the first time I've had substantial increase.
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No, I haven't seen or spoken to MO since I got the report. Sometimes I think the Pope is easier to reach. Hopefully I'll hear from her next week. If she decides to change tx, which I'm pretty sure she will, I'll probably go on Ibrance + Fas providing a clinical study is still recruiting. (Ibrance not approved in Canada for second line tx). If that fails, probably Fas alone. What would be your next tx?
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Hi Linda, I did not have a cough but was very tired and winded. Could not walk much without getting tired. Chest xray showed no concerns but thankfully PCP said let's have you see cardiologists that I had seen in past for consult due to family history of heart disease. Cardiologists sent me for stress test this time and told me nothing wrong with your heart but I want you to see pulmonary as your exercise tolerance is very poor and slight increase in pulmonary pressure. Cat scan done. Found a number of nodules, small effusion and one enlarged lymph node. Biopsy on lymph node pos. for breast cancer. I am on letrazole and Ibrance. Node is down and fluid is gone. Nodules the same but now they are questioning if they are even cancer now, though they thought they were at first. Also to note I had a small effusion in 2011 when diagnosed stage 2. All assumed effusion was from pneumonia two months prior. Now wondering if it could of been metastatic all along and the tamoxifen helped to control it after the chemo and radiation..........onc not sure. I have a rare type of Breast cancer called invasive papillary carcinoma and it tends to be slow growing ( very rare for it to become metastatic).
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Hi Singlemom, thank you. Happy you're responding well to tx! Was a biopsy on one of the lung nodules ever considered or was that impossible? Do you remember what size were/are the nodules?
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Hi All,
I have a date set for the insertion of a PleurX Catheter! Hooray! Unfortunately it is not until next Thursday but I will take what I can get given that they shoe horned me into a slot in the OR. The surgeon will likely get his knuckles rapped as the folks in charge of OR bookings wanted 50 minutes of time but the surgeon said that is ridiculous as it only takes 15 minutes to put in the catheter. 😊
Now I just need to find out if this will impact my chemotherapy schedule as my next infusion is supposed to be next Friday. Hopefully it can be managed. I don't think I can make it much longer without something being done with this lung. I am soooo short of breath again. Poor Sadie. Looking at daycare options so she can get some proper exercise.
Pat
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Linda; I'd guess that they will try either Arimidex or Aromasin next, most likely arimidex since it's less expensive on my insurance. I didn't take any hormonal after my original BC so they are all still available. I opted out of Ibrance when I started taking femara with my MOs agreement.
Pat; Yahoo! on the catheter, it makes such a difference. I don't see why you can't have chemo the next day other than you'll be a little sore. Do ask your dr for pain meds for the first two days after they put it in, just a little soreness when you move. I'd guess the pain meds won't affect your taxol infusion. Poor Sadie, I'll tell Coach to run a little bit for her. Actually Coach looks like Linda's picture of her cocker.
Judi
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I heard back from MO. She's not overly concerned about the lungs nodules as they are very small and cannot be biopsied. She can't exclude that they are mets but impossible to say now. We will have to monitor and see how they behave. I will be changing tx because of new axillary lymph node mets. Moving on to Faslodex.
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Linda; Hope faslodex does as well for you as did Femara. I won't find out until the end of the month what if any thing we are doing about my TMs. They may wait until I get my scans in March, not sure.
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Linda, I am sorry meant to respond earlier. My nodules are small and they could not biopsy them because of their size. My MO said same as yours, not sure if cancer. We are monitoring them. So far no change past year.I have heard FALSODEX is well tolerated and many people do well on it! I am sorry for your progression.
Has Ibrance been discussed as well?
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Singlemom - Ibrance is not approved in Canada for second line tx. We looked at the possibility of a clinical trial with Ibrance + Fas (no placebo in this one) but it's no longer recruiting. You're right, a lot of gals do well on Fas alone. I'm glad to know your MO has the same approach, watch and see.
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Linda - faslodex is great for lungs (hoping CN approves Ibrance as a partner soon). I've had 15 rounds of both Ibrance @100 +fas and have a stable lung now. It is only in left lung pleura, but caused numerous fluid build ups. Waiting for next PET at end of March to see if I can pass on lung drains for awhile. It also cleared up my sternum issued and rads apparently killed my jaw met. wee~ Sadie - yikes on the wait for a catheter - get that in soon. Cive - please keep us posted.
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Good news Lalady! Hoping your next scans are good and no more draining.
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Well, home from the hospital after having the PleurX catheter put in. It went relatively smoothly but was a lot more painful than I anticipated. I was pretty sore last night and had to ask for pain meds several times. The pain was exacerbated by the fact that my ward nurse put me on suction for the second one litre draw of fluid from my lung. She had been warned that it went fast but got busy and, as it turned out, my call bell wasn't working. I was in agony with the pressure in my chest and the cough that resulted. I could barely catch my breath when the nurse came back. After that we decided to let the rest come out via gravity through the night.
I did ask my surgeon for a script for pain meds which he agreed to but there was nothing when they discharged me. Hopefully extra strength Tylenol will work.
No chemo today. They called my house yesterday to advise that my MO wanted to postpone a week. I think he looked at my blood and decided the risk of infection was too high. I'm disappointed but it probably would have been a bit more than my body could handle.
Pat
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I am sorry to hear that you experienced pain with your Pleurx catheter. When you drain, be sure to pinch the tubing somewhat to slow things down a lot, and that will make it far more comfortable.
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WOW Pat, that was quite an adventure. I sure hope you're feeling better today.
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