mets to lung
Comments
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Pat, don't listen to that Dr. when he says medium survival is two years. Nobody knows how long we have but the medium time to progression is 2 years on Ibrance and then you move onto something else. There are lots of new drugs in the pipeline. If one doesn't work, another one might. If you have the option of another opinion, I would certainly look for another doctor. Don't accept just one opinion of your future.
I certainly understand the need to plan, I'm a bit of a control freak too but you've got time to think about retiring. Many have seen good results in just as few as six months or less on Ibrance. Take a deep breath and believe you have time.
Faith (in the future)
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Pat - Taxol is a chemo which just failed you, so take a break and save the big guns for later. The median time for progression on Ibrance is something like 20 months. http://www.curetoday.com/discussions/breast/9298 Ibrance is tricky, either you tolerate and it lasts a long time, or you don't and move on to another protocol. It takes about 4-5 mos to kick in, so your blood numbers need to be good. FYI I am on Arimidex, faslodex, and Ibrance. I start round #17 very soon. But there are many ladies who don't get this far on Ibrance + anything so please know there are other combos ready if Arimidex + Ibrance don't work. Did he discuss combining it with faslodex? FYI I'm working full time as I enjoy my job and getting my bills paid. Plus I have 2 vacations planned this summer which don't include Ibrance failing me. lol Sounds too early for you to think any other way. Faith - lovely to see you and hear your cheer as always! (())
Claire in LA
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Hi Claire and Faith,
Thanks for the support. I don't want you thinking that my oncologist is heartless though. He's a sweetheart but he's been a bit vague in terms of setting expectations. When we met in January he indicated he thought I would do well for a good long time. What the heck does that mean? His notes indicated that he thought I would stay in remission longer than average given the number of years between original diagnosis and recurrence. This is why I asked about average survival today.
I'm not trying to get an exact number but want to be somewhat prepared. And I have no plans to give an inch to Mr. Cancer. I am just at a place where I feel I need to make some decisions. I am not rich but am comfortable, have no dependents and so, while I enjoy work perhaps I don't need to keep doing the nine to five thing. And the problem with working is that I find my days are so full that there is little time for me. For instance, I love golf but I'm lucky if I can get out once a week.
What complicates things is trying to make the right financial decisions. In an ideal world maybe I would go to part time but that negativity impacts my pension and also any sick benefits down the road if things progress. This is why I feel a bit of pressure to think this through now and make some wise decisions. Does this make sense?
Thanks again for all the support. You're all amazing.
Pat.
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Hey Pat! Sorry about the taxol. Claire, I think Pat's doctor was saying the median survival is 2 years, which means that most people get at least two years. Median is not the same as average just the most seen number. And here I am 18 months out and going strong! Pat and I share the more than 10 years before being diagnosed with mets, same mets lol, although she is much younger than me. If I get at least 18 months out of faslodex and Ibrance, I'll already be past the median! We get how long we get and I agree you want to think about what you want to do if you'll only be here for another 5 years or so. It's an important and difficult decision. I know that if I could find a job and work part time, I'd want work to be part of but not all my life.
So are they letting you drain that catheter more often. How's your shortness of breath and how's your master? She every give you people bones?
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Hi Cive! Exactly right, oncs should talk about progession free survival (PFS) on Ibrance at 20 mos or so, not just survival. There are lots of meds out there. Bravo to you for 18 months! I am on round #17 of this protocol and still working full time. Take that cancer!
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Progression free survival is also a measure of your quality of life, because it means you're not getting worse. You pretty much got the 2 year mark on the combo!
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Hi Cive,
Sadie is doing well. I have her on a bit of weight loss program as she got a bit pudgy over winter. It a good idea as she is already a bit on the lazy and stubborn side with some things. I swear she is part mule. But her energy is definitely picking up which means I need to get rid of this fluid!
SOB is much better except occasionally when I exert myself. The fluid is not really dropping, anywhere from 700 to 900 millilitres at each draw. Still twice per week. If it appears that is not going to do it I may need to talk to the surgeon. So far I am comfortable with home care doing the drain although I could likely do it blindfolded at this point. One issue is the cost of the supplies which I suspect I would have to cover if I did this on my own.
Thanks all.
Pat
BTW. I hate autocorrect. I swear people will think I am illiterate. Whenever I read back on posts I find the most amazing typos!
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Hey Pat, it seems to me that your health insurance would be charged less if you just got the supplies and did away with the home health aide. You might discuss draining at least three times a week with the surgeon that put the catheter in, according to my surgeon, the more often you drain the more quickly you are to have a spontaneous pluerodesis. But since I read on the Ibrance thread that you will be starting soon, perhaps that will help to dry you up. But it did take Claire a year on Ibrance to stop the monthly thoracentesis. So much the better for Sadie's diet, if you could actually run....
Judi
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Hello ladies,
I hope this is ok to ask. I would like to put a worry I have that is keeping me up to rest. My mom was diagnosed in feb with breast cancer. Today she was told it has spread. It is on her spine in a couple places and her ribs on each side. They also found 50 nodules between both herlungs. I couldn't form a sentence at the appointment to even begin to ask questions. So I'm asking you ladies to hopefully ease my mind. Is 50 nodules common for met to lungs? On her k chart it actually says " unfortunately" there are several nodules on both lungs. Is this something that can be treated? My mom has never had bronchitis or anything we can think of that would explain the nodules. Assuming it's cancer, please tell me the doctors aren't going to tell us she has months to live. Years would be wonderful!
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hi
Usually Very treatable for a long time ...others here have mets to multiple sites
what was the treatment plan as she is er positive and her2 neg?
this means drug AI is suitable first not chemo rads and Her 2 neg ..slower growing
Ihave mets to both lungs .my oncologist started me on AI drug Femara as i am er postive six month scan showed reduction in size
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bright55,
Thank you for your response. My mom is her2- and estrogen and progesterone +. Hopefully this is good. We do a bone scan and brain MRI and rib biopsy next week. We don't see a dr for another two weeks. I will look up the drug you are taking. I'm curious if it can work in both the bone mets and these possible lung mets. How do they confirm that the nodules in her lungs are cancer?
That's great news that your medicine is working!
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Welcome, Jennmadd, the ER+PR+HR- status is a good thing as your mom is a candidate for a lot of drugs to treat this cancer. Femara or the generic version Letrozole works to keep things stable or reduced and the fairly new drug Ibrance added to that is seeing good results also. Have hope, I believe your Mom will live a long time with a fairly good quality of life.
Faith (in the future)
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Dear Jennmadd....I had 50 nodules in my lungs. I'm 2.5 years out from big chemo on Herceptin and Perjeta. I'm in my 60's. Taxotere did a great job
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hi beatmon
As i had only one site i had lung node biopsy to determine cancer type so it was breast cancer mets . My bone scan was negatve.. it took two weeks from biopsy and bone scan to see onc then i started AI. .
It all takes time to co ordinate scans and get results
then health care team will review scans to determine best way foreward.
Usually Ct scan and blood work every three months to see if drug therapy is starting to reduce tumor size. Bone scans usually after 6 months .
PET scans some time is used.
If bone is involved other therapy drugs and some times radiation is used
Make notes when seeing oncologist and record all tests and drug info
Maybe time frame will be more approproprite when three month rescan is done then MO can suggest time frame..some times very difficult for them if multiple sites are involved. Best not to revisit this till treatment has started.
Good luck with mums treatment
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hi jennmadd
sorry last post i named beatmonn by mistake
All the best with mums treatment
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Hi I've been DX with a lung nodule er+pr-her2+. I'm getting a third opinion today then should have a plan. Anyone have lung nodules removed?
Maryellen
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I was diagnosed with a pleural effusion, not a nodule, but I've read from other poster's here that they have had part of their lung removed to remove tumors. Perhaps one of you can respond to Maryellen?
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Hi,
Is anyone loosing weight? My weight has been going down for months now. At the beginning I thought it was due to the progression in my lungs and liver. I've been on navelbine for a month now and I think that I'm still loosing weight. Does it mean that I am not responding to the treatment. My MO does say anything about my weight.
Ziz
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Hi Ziz,
I lost quite a bit of weight within just a few months. The problem is, with pleural effusion, you body is working much harder to breathe. Unless you are really rigorous about a calorie dense diet you are likely to lose weight. Now, after three cycles of chemo, I am still dropping a bit of weight even though I am eating well (and quite frankly letting myself eat comfort food - aka crap) and the lung is under control more or less. I'm not losing much now but certainly not gaining unless I indulge in something salty!
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Hi theziz, I could only wish I was losing weight! I did lose about 30# (by dieting) the year I was diagnosed with pleural effusions. But once they were under control, I've gained 15# back. Oh well one of the possible side effects of Ibrance is weight loss. I wish I could just hand you a few pounds.
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Thank you girls,
Cive I wish you could hand me some pounds too.
Sadiee I'm breathing better and I have had 6 rounds of chemotherapy (vironevalbine) and I think that I'm still loosing weight. It is scary and makes me
Think that I'm not responding to this treatment.
Also I live in Costa Rica and I'm going to Denver on Saturday and next week my husband and kids are going to ski so wewill be going up to 8000 in altitude and it scares me as well.
Ziz
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Ziz, have you discussed the 8000 level with the doctor that is dealing with your shortness of breath? I know my bil had lung cancer and can't go to high altitudes with out breathing distress even though he is on oxygen. Sounds like a wonderful vacation for you and your family, but you might check with your doctor. Have a wonderful time!
Judi
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Ziz my BCO friend on Navelbine has lost a lot of weight too.
Please ask your onc about this and the possible effects of the altitude in CO (agree with Judi). I flew to Park City Utah when I still had a pleural effusion (having drained it earlier) and I struggled with sleeping the first night and had to sit down a lot during the 5 days I was there. FYI I have lost 15lbs on Ibrance and start round #17 in a week. Rooting for all you ladies! Pat - I wish faslodex was approved in CN, just don't understand govmt. thinking. It is expensive, but so is Ibrance. Maryellen - I h0 -
Ziz my BCO friend on Navelbine has lost a lot of weight too.
Please ask your onc about this and the possible effects of the altitude in CO (agree with Judi). I flew to Park City Utah when I still had a pleural effusion (having drained it earlier) and I struggled with sleeping the first night and had to sit down a lot during the 5 days I was there. FYI I have lost 15lbs on Ibrance and start round #17 in a week. Rooting for all you ladies! Pat - I wish faslodex was approved in CN, just don't understand govmt. thinking. It is expensive, but so is Ibrance. Maryellen - I have not a nodule, but there is a lovely lady from TN (Rpoole) who had successful surgery.(()) Claire
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I was so happy to actually be able to jog in the desert with my best friend, my dog Coach. And then another challenge, he was hit by a car in a parking lot which completely ruptured one eye and we are not sure if he will be able to see out of the other. So no more desert jogging for us. Sadly, I just haven't done any physical exercise for the last week since this happened. I know I need a new plan and I'll get there. What trooper Coach is! I live on the second floor and he is too heavy for me to carry, so my big sweet boy actually walks up and down the steps with me even though he can't see. Guess I will have to be a seeing eye person.
Judi
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Oh no! I'm so sorry to hear that Judi. It's my worst nightmare thinking about Sadie getting hit. Poor guy. Do they have a sense of when you will know about the vision in he second eye?
Dogs are amazing in terms of how much they trust us. Coach knows you will take good care of him. Sadie and I are sending positive thoughts to both you and Coach.
Pat
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Judi,
Poor Coach! Here's hoping he's soon good as new.
Here's to your faithful companion and you!
Tina
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Thank you Pat and Tina. If Coach can see anything out of the one eye, it seems just to be light. He looks at me with it when I talk to him, but he runs into things around the house. Hopefully that is just because of the satellite dish on his head, which he hates. If it ain't one thing, it's another. Pat when do you know about the Ibrance?
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Poor Coach. The cone of shame on top of everything else. Is there any chance that his vision in that eye will improve? I imagine there may be some swelling which can impact the optic nerves.
I am not sure when I will hear about the Ibrance but suspect it won't take long. I hope to order my records for the last few months today as I would like to see what my oncologist recorded from our last meeting. The Cancer Agency has already lined up blood work and my next appointment but I suspect these should be shifted given the delay in starting on the Ibrance.
Take care. Pat
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It looks like I may not be taking anymore Ibrance. I sent in the paperwork to have the BCCTP run by the state and paying my copays, but they haven't done anything with it yet. So my MO's office called yesterday and told me I'd need $800 copay for my visit today. So I told her to just cancel the appointment since I don't have $800. She called me back and said it would $38.50 for just the faslodex. I finished my first full cycle of Ibrance yesterday (the 7 day off part) so I should be starting a new cycle today. Looks like not. Oh well I didn't really want to take it in the first place.
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