mets to lung
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Dear Liz,
My BC story started in 2005 with a very tiny, non-palpable IDC. I thought I was fine after surgery, chemo and radiation.
In August of 2009 I had a revision done on my reconstruction. It had to be under general anesthesia, so a chest x-ray and blood work were ordered before surgery. There was nothing in my x-ray that caused my PS to postpone or cancel. After the surgery, it took me a while to be back to normal. I was trying to get better quickly because the start of school was almost at hand. I hired someone to help me get my classroom ready for my kindergartners. All this time my SOB was getting worse by the day. I called my GP who agreed to see me right away. All of this was complicated by the fact that my beloved dog, Angus, was just diagnosed with bladder cancer. So I was crying buckets while trying to breathe. GP said lungs sounded fine, but SOB seemed extreme. He sent me to x-ray, where the technician called the radiologist, and the radiologist called my doctor. Apparently my x-ray showed pleural effusion and I had to be taken to ER. I was admitted by the ER doctor, who was afraid that a blood clot or a pulmonary embolism was causing the pleural effusion. It could have been a hundred other different causes, my attending physician said. She wished it was something like pulmonary embolism (deadly but treatable). But it really looked like cancer, according to the ct-scan. My oncologist visited me in the hospital after that and we had a treatment plan by the time he left.
I had 5 different thoracentesis procedures. The first one hurt tremendously because that radiologist from hell did not care. He did it very fast and was not concerned about me as a person. The last 4 almost felt good! I was injected with lidocaine prior to another deep tissue injection that numbed me. They were performed by a PA and an RN who engaged me in meaningful conversation while I was being drained. I looked forward to them!
I have not needed another thoracentesis since last October. I attribute it to the chemo drugs. My metastasis saga is like a roller-coaster. In 12 months I have had remission, progression and more progression, but all metastases still located in the pleural lining of my left lung. Next scan is on 10/15/14 to see if present regimen is working.
I hope you find a little bit of peace and quiet now and then. I am so aware of my body now. When I get stressed I can almost feel the microscopic beasts waking up and wreaking havoc on my body.
Hugs,
Brenda
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Hi everyone! I've read the thread several times in the past month but haven't posted because it has been a rough one. After my initial bilateral thoracentesis' I had been started on the first round of Gemzar and Carbo. I felt that went pretty well, and a few days later I went to my daughters soccer game and felt pretty weak and winded. Called the onc who said to go to the ER. Had another ct chest and had bilateral effusions again. Was admitted to the hospital and was there for about 2 weeks. (I actually went home for one day and went into Afib and had to get readmitted). Ultimately I now have a pleural drain on the right, and had another thoracentesis on the left. I remain on oxygen. I've now had two rounds of chemo and it has not been easy. Became pancytopenic and had to have platelets transfused twice. I now know why people have said they look forward to their week off with this combo! Extraordinarily fatigued! Total body aches. Ugh. Hopefully the chemo is working! Interestingly enough, yesterday I was contacted by one of my onc nurses and she said my onc thinks I might be a good candidate for a new study being done at the University Hospital regarding breast cancer vaccination. She has 3 other patients in the study so far and they seem to be having some positive effects. I'm meeting with one of their oncs Wednesday to see if I meet criteria. The scary thing is you have to have a 30 day washout from all chemo prior to starting the study. I worry about further progression, but if the study works...... Has anybody heard about the vaccination studies? They are looking for a vaccination to prevent breast cancer, but feel there might be some benefit to us Stage IV gals. Wouldn't that be marvelous!!! I know this message is long, but I wanted to catch up. It is also encouraging to me that so many of you have been doing well on your current treatments! Kelly
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Kelly how exciting for you, I myself am on oxygen and chose to stop all treatment b/c of the side effects in June, am doing ok, just can't breathe....
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Blondie, Do you feel better after stopping all treatments? Except for the breathing of course.... You're estrogen positive-are you on any estrogen inhibitors or did they just not work for you at all? They seem to be a little easier to tolerate. I understand going off chemo if it just gets to be so bad...when I was in the hospital I was feeling so horribly that I laid there thinking "this is no way to live". Luckily for me I feel better than that now. Sending you lots of hugs and hope your breathing is easier. Kelly
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Thanks kelly n yep other than the breathing n the pain from the bones i am good, do get tired tho
Nope not doing a ything. I do have what we think is a tumor on my leg n a lymph node under my arm is enlarged but other than that
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Blondie, I'm glad it sounds like you're doing fairly well. I have bone mets also and they haven't caused me much pain. Neupogen-now that causes bone pain. I've basically been in bed for the past 3 days. Percocet is my friend these days. It sounds like you are good with your decision to stop tx. When my time comes to make that decision I hope my family and friends understand. They always talk about how strong I am. Kelly
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Percs r my friend also, yep i am at peacewith it
Good night hopefully
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Brenda .. wow.. you've been through a lot, but then again I guess we all have. Hugs to all and hope we all can enjoy some good days with the beauty of the fall. I did today.. took my dog Sasha to the dog park and she played with a few other dogs and I walked slowly with another regular dog mom and yes it was a nice fall day and good for me to be out. I am cautious now how fast I walk and avoid steep hills, but doing better than I was 6 months ago at same dog park! That is a plus.Cathy
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Cathy- Isn't it nice to enjoy a beautiful fall day. I love this time of year. I'm glad you are doing better. Kelly
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Blondie, Last night before I went to bed I read one of my earlier posts, and it bothered me. I wanted to make a clarification. When I said how my friends and family always say how strong I am, I in no way meant to say someone is weak if they decide to stop treatment. I would actually say that I believe the exact opposite. I wanted you to know that. Kelly
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Cathy, I wish you many, many more good days to come! I miss my dog. I have a leash for the cat, but he doesn't like it. He crouches and crawls and refuses to walk normally with a leash. I do get free hugs and kisses like I did with my dog.
Kelly, I agree that stopping treatment requires a lot of strength!
Brenda
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Kelly no worries, didnt think u meant anything mean by it. Hugs
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Hugs right back at you! Kelly
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I totally agree ... Stopping treatment requires so much strength. It also requires being at peace with who you are and your relationships with your loved ones. I told my daughter once that I hoped to live ling enough to see my 3 adult kids become responsible adults who pay their own way in life and give back to society. My daughter told me if that's what I was waiting for I would live a long time. LOL! Well, I'm still here and they've done it .... At least the paying their own way part. Giving back will come. I'm happy to see them all in good places. My onc has me on a chemo break and I'm enjoying it so much. It's so nice to not have to schedule my life around when I will be feeling good. Blondie, I really get where you're coming from and admire your strength!
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Thanks n have fun on u r break,
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Susan, Peg & Brenda -
Thanks so much for sharing your experience. It's taken some of the sheer terror of the unknown out of it for me.
Blondie - I am sorry to hear that you've come to the end of treatment, and that you have trouble breathing.
I hate this disease so much.
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Liz I am at the end of my treatment of ,my choice, which I can always change my mind, but I don't see that happening,\thanks tho.
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What a nerve-wracking day!
I almost did not make it to my ct scan appointment. There was a problem getting someone to access my venus port. But the scan went on as scheduled.
Later in the day I was in a car accident. It was the other party's fault, but she insists it is mine. I have an appointment tomorrow to have my damage fixed (front bumper and headlights!). I was not physically hurt, but I felt messed up mentally.
When I finally got home my younger says, "Your doctor left a message." Oh no. Not today. Today is my unlucky day.
Doctor's message: "Good News. Scan looks much better. Will talk in greater detail when I see you Monday. We will decide whether to continue or change to monthly injections."
Wow, to me this is good news in a very huge way. This means the new chemo has been working and I get to pick from two things: more chemo or monthly injections. I wish I could say, "No treatment!" but after two weeks of no chemo I feel great again. I will find out what my doctor thinks on Monday.0 -
Brenda,
Sorry about the bad day but congratulations on the good chemo results! That's more important anyway. I had good scan results yesterday too. Brain mets have halved in size! Breast tumor shrinking though a bit higher max SUV. Lung tumors unchanged in size but a bit higher max SUV. Reappearance of a couple of lymph nodes and a spot on my femur. Not 100% positive but the brain situation is much trickier so that's a huge relief!
Hugs, Susan
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Yay good results 4 both of u loving that..HAPPY DANCE
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Susan,
What does higher max SUV mean? I am thrilled to hear to have a 50% reduction in your brain mets. That's something to dance about!!!
Love,
Brenda
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Thanks Brenda!
The max SUV (Standard Update Value, SUV Wiki Link) is a measure they take during a PET scan. My understanding of it is that it is a measure of how active the tumor is. They can only do it for larger tumors since there has to be a measurable ROI (region of interest). As I remember, you don't have any large tumors which is why you haven't seen the measure before.
Hugs, Susan
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Congrats Susan and Brenda! love hearing good news
....sorry about your car Brenda0 -
keep the good reports coming, Ladies!
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Susan...sorry that your car had a bad day
but happy with your good news. Brenda happy also with your scan report...hugs, Peg
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Hi everybody! Sorry I've been MIA for so long -- looks like I have some catching up to do. Nothing new with me really. Continuing with Herceptin and Perjeta, and the SEs aren't too bad. Not compared to chemo anyway. Still have very little energy and it's hard to breathe, but at least I don't have to be on oxygen, and I'm better than I was 6 months ago. I just feel like I don't have much of a life these days. Even going to church or going shopping takes too much out of me, so it's just me and my TV and my crocheting. Oh how I miss doing things with my son -- going hiking and biking and all that fun stuff. I have to wonder sometimes if just MAYBE some of what I'm feeling is just the after effects of chemo, and just MAYBE I can hope to get a little bit of my old life back again one day. Is that too much to hope for?
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Beatmon , Momonana and liljohnnysmom: Thanks to all of you for wishing us well and cheering us on! BTW I was the one who had a car accident. I get to pick it up from the repair shop on Wednesday.
Carolsue: I heard some ladies in different threads taking "Ritalin" for energy during the day. I know it is prescribed for people with ADHD and ADD. I also know that it curbs your appetite. I'm not saying it's right for you, but maybe you can ask your doctor about it?
Hugs to everyone!
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Hi, folks. I've posted in the Bone Mets thread, too, because I'm lucky enough to be a member of that club as well.
But I have a question about lungs. Well, about thoracentesis. I had one about 3.5 weeks ago, and I think I might need another one. Is there any advantage in waiting until symptoms start to interfere with daily movement, or is it better to "head it off" by getting the fluid drained as soon as I start to feel short of breath and hear the wheeze in my breath? (I should mention the fluid is in the chest cavity around my right lung only, the left lung looks clear.)
I just started Tamoxifen and Zoladex therapy on October 3rd. I'll have my second treatment on Halloween. For those who responded to treatments, did the fluid stop accumulating? Or did you have to get a surgery to make it stop? I would have to say it's my scariest symptom.
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Hi, 912,
My experience is that when my regimen is working my pleural effusion disappears or is greatly diminished. I hope your treatment starts working. Meanwhile, I don't see why you should wait until you are debilitated by the SOB.
Good luck!
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Thanks, adnerb. I'm breathing easier just reading that.
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