mets to lung
Comments
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AimeeMac,
Thanks for sharing the info about your treatment. I will be visiting the Radiation Oncologist for the first time tomorrow. I think the primary focus will be my brain mets but I also have a 4cm tumor on my lung with "some satellites". Not sure what that means.
Hoping along with you that the treatment on the two tumors was successful! How are you feeling after the treatment?
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never had radio ablation or wedge resection so can't comment on those. I've only had AI's and chemo since being diagnosed stage IV in 2008. Did have a lobe removed from my right lung back in 1989 when I had a lung cancer (different from the BC). I remember it was the most pain I ever experienced in my life and swore I'd never have lung surgery again! I took advantage of pain meds, I can tell you! I start carboplatin next Wednesday after latest scan showed progression while on cmf. Hoping that everything they're throwing at us gives good results!
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SusaninSF -
I ended up overnight in the hospital because my pulse oxygen was low, and there had been a slight pneumothorax (lung collapse) during the treatment. I went home Saturday morning with Percocet, which I didn't much need but the Dr. insisted I try not to be brave and heroic about pain. Took 1/2 day off yesterday because I was still tired, but other than that I am doing well. The procedure was pretty painless (of course I was completely sedated). Glenna, sorry to hear about the extreme pain of the lung surgery. That was and may still be an option for me in the future so thank you for the warning and I hope the pain subsides soon.
Aimee
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My oncologist just called, and the verdict is...DRAMATIC IMPROVEMENT!!! I don't have an official report to read from yet, but the highlights I can remember were: near complete resolution of the lung infiltration; the CT part of the scan showed that the bone spots from the first scan were stable (apparently it's really hard to make those go away?); and on the PET part of the scan, NOTHING was lighting up at all. The pleural effusion I had on the left side is half what it was, and the one I had on the right is completely gone! It's official -- two more treatments, and I go on maintenance. YAHOOOOOOOO!!!!
I'm hoping some of you experts can tell me I'm right to be encouraged by this. I'd hoped for NED, but this sounds pretty darn good. And after two more chemo treatments and then a few more rounds of Herceptin/Perjeta, who knows, maybe I'll reach NED by the time my next scan rolls around.
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So it looks like NED has stopped dancing with me. My oncologist wants me back
on the same chemo in 2 weeks. He also wants a biopsy done ASAP but
he's pretty sure it's triple negative because of the way it responds to
chemo. It's not "as bad" as September of last year, he said. Also, the
good news (if there's such a thing) is I get to stop the Femara. I
feel like death is at my doorstep once again.0 -
Congratulations Carolsue63! Like you said, sounds like the best you could hope for!!!
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Adnerb, So sorry to hear that things are looking scary again. Please let us know how the biopsy goes.
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carol sue, congratulations on fantastic news. Yes, you are right to celebrate!! Your tests results were VERY encouraging!!
Brenda, sorry you aren't dancing with NED anymore. Seems like many of us are on the same Merry go round. We reach NED, then there is progression, change treatment plan, stable, progression, change treatment plan, stable, NED, progression, change treatment plan and round and round we go! The good news is that there are lots of treatment options and your onc seems to be on top of things. Yes, it is scary, but hang in there. Sometimes that Merry go round ride lasts for years! I've been on it for six years in May. Glad you found something to celebrate ... Going off the femara!
Aimee, glad you are doing well after your hospital visit and lung issues!!
Susan, let us know how your appointment with the radiation oncologist went.
Hugs to you all,
Glenna
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My Rad Onc appointment went well. She definitely knows her stuff as she specializes in mets from BC. Really liked her whole team. She concentrated on getting a handle on my brain and eye mets. I will have to have whole brain radiation since I have so many spots on my brain. I went home and realized, "What about my breast and lung tumors". So gosh-darned many sites I lose track. Wrote to her and my MO and they both wrote right back that they will watch my breast and lungs hoping that the Tamoxifen will work on those.
I was feeling like the Tam was helping me to breathe better but the last couple of day I've been battling hay fever and other allergies so I've been coughing a lot. At least, I hope it's the allergies and not some progression of my lung mets.
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Brenda -- sorry to hear NED is such a fickle dance partner.
I tried to flip back through posts but I must be overlooking it. What are they going to biopsy? And what kind of chemo will you be doing? I hope NED will see what a fool he is and return to you soon.Susan -- my cough has been worse again recently, too. And I was just telling my MO on Friday how much better it had been! I'm going with the allergy theory, too. 'Tis the season after all.
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Carolsue, thank you for sharing with us your dramatic results! I am very happy for you. I will go back to the one and only treatment that I've had after stage 4 dx.; Carboplatin and Gemzar. Today I wait to schedule my biopsy. Hopefully they find something that will allow them to use tartegeted treatment.
Thanks for all your sentiments, ladies. They mean a lot to me.
Brena
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Brenda: I'm truly sad to read you've had progression and need to get back to chemo. I hope your biopsy goes well. Thinking of you. Jean
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Thank you, Jean ((Hugs))
Brenda
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Brenda, The Gemzar/Carbo blasted you to NED once already, I am praying for it to do so for you again!
I have increasing SOB, cough and fatigue and my neck and groin nodes are even more tender so I am assuming we will see progression on my next scans. I was doing so well we postponed the scans from May to August. We may have to rethink that, but I do want to wait until after my daughter's wedding May 17 if possible. The wedding is close enough now (38 days) I am assuming I will be well enough to enjoy it staying on just the Femara for now.
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Chanah, hoping you are just having side effects from Femara!
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Chanah, my daughter's wedding is also may 17th. She moved it up from next may to this May so we've really worked hard to get it together. Deep in my heart I think she moved it up because she was worried I wouldn't be here til next May. She doesn't understand that I want to be here when she has her first child!! 38 days til the wedding .... Don't scare me.
Susan, when do you start the brain rads? Hope all goes well and the tamoxifen is doing a job on the other tumors!! Sounds like you have a great team!!
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37 days for us now Glenna.
My daughter considered moving up her engagement and wedding but decided not to; and here I am helathy enough to enjoy the simcha.
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Chanah and Glenna: You will both enjoy your weddings and I will have fun at my son's graduation. Wild horses couldn't drag us away.
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life is good!!
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Hi all,
This is one of my first posts here, but I'm looking for some information on what to expect going forward.
A routine MRI to check on my implant recon found lots of lung nodules that were confirmed by CT. I didn't have symptoms when we found them (almost a month ago), but I have pain now, and a fair amount of shortness of breath and coughing. At first I thought it was anxiety from knowing the nodules were there, but I know now that it isn't. I have a biopsy to get more specifics on Thursday, but I'm trying to figure out what the next steps will be. I did ACT in 2010 at my first (stage II) dx, and have been on tamoxifen since then, though I guess it hasn't worked for me. My initial dx was er/pr+ and her2-.
At first I wanted to pretend this wasn't happening, but now that I'm having pain I'm looking forward to getting some kind of treatment that will make it easier.
I'm 28. I just got married in August, and am finishing my last year of law school. I was training for a half marathon. I just want to be able to deal with this so that I have a chance of graduating, passing the bar, and starting the job I have lined up. Even if I won't be able to do it for very long, I want to at least say I did it.
Because I'm having symptoms, is it likely that I'll have to go right to chemo, or would it still be standard procedure to yank my ovaries or try stronger antihormonals first? Are the common chemo cocktails for lung mets ones where you lose your hair? It just got back to the length it was before my first dx a couple of months ago.
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gah, I'm so sorry about your lung nodules. Although I'm in my 40s, and not as young as you, when I had a recurrence, it appeared as nodules in my lung. I had just married and moved to NYC and had a life I wanted to live! I was quite annoyed (and terrified, of course).
I wasn't on any preventive treatment. Tamoxifen may seem disappointing, but perhaps it kept you symptom-free for 4 years, which is what some women with Stage IV dream of, a treatment that prolongs their life for years.
There's no REQUIREMENT that you return to chemo. LOTS of women with hormone-positive breast cancer are treated at Stage IV with anti-hormonals. Some do not have their ovaries removed. I am part of that group. It's the tendency of some doctors to over-treat. You had a very strong chemo cocktail and the cancer returned. Maybe anti-hormonals can give you more time. If the nodules aren't too large, you have time to try. I had progression in my bones and lymph nodes too and was in a lot of pain. But we were able to find treatment that worked. Don't ignore the pain in an effort to pretend your cancer isn't that bad. Find a doctor experienced in treating cancer pain. (Not all oncologists know how to treat pain.)
I recommend you get several opinions. I personally recommend Sloan-Kettering in NYC. Other ladies with far greater wisdom and experience than me will also have advice. Because of your age, I think you should make sure you understand the long-term effects of treatment. You may have many many years of life ahead of you. I certainly hope so. You want those years to be as healthy as possible, without compromising your quality of life with terrible side effects.
I hope that soon you find treatment that brings you to NED and that you continue to live a rich, fulfilling life.
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Thanks so much for your response and advice. I'm very happy to have access to the collective wisdom and experience of this group.
My initial treatment was at Sloan (I also used to live in NYC!). I've since moved to Chicago, and though I've been doing all my follow-ups in NYC and am getting opinions at Sloan, I'm also setting things up with an onc at Northwestern so that I can have something close. If anyone is treated at Northwestern I'd love to hear about the experience.
I know that all the available statistics are out of date, but the ones I've seen are...frustrating. Particularly since the 18 month number wouldn't even get me to age thirty.
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We always say "Don't listen to Dr. Google." When I was first diagnosed a couple of weeks ago I saw something online that said that average survival period after discovering eye mets (I have lung, brain, eyes and breast) was 6 months and I panicked. I now understand that it would be highly unlikely that I have such a short prognosis. You'll see on this board alone that there are many women who have lived for many years, and I have met women in our local Stage IV group who have lived decades so far with metastatic cancer.
I am 50 but not yet menopausal so they have me taking Zoladex injections every 4 weeks to put me into menopause. I don't need my ovaries (and they probably barely work anyway!) so I will talk to my MO about having them removed but you should be able to keep them and do the injections. The injections are easy and I haven't had any side effects.
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gah, the 4 years between your Stage II diagnosis and recurrence discovery is an indicator that your cancer is slow growing at this point in time and your life expectancy is probably longer than someone whose recurrence was during or soon after chemo. I'm using vague words like "probably," but there are statistics that show that longer time to progression is a positive sign. One of the most upsetting parts about Stage IV is that no one can tell you exactly how long you have to live. It can also be one of the happiest parts.
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Gah, so sorry about your lung nodules and the crappy pain and SOB. Want to share that I was diagnosed with lung mets 6 years ago. Two years on AI's and four years now on chemo. Have lost my hair but have a full head now. Will be starting carboplatin on Wednesday because of progression and am told I will lose my hair. I've been told that before and did not lose it. My daughter is getting married may 17 so of course I'd like to have hair! But ... And the big but here ... Is that I've been treated for 6 years and not going anywhere soon! Once you get a treatment plan in place you will feel better about your future. And really, really ignore the stats! Hugs, glenna
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Hi gah,
Welcome to this very exclusive club! I was declared in remission 3 months ago, and now the cancer is back in the pleura where it was before. So we will re-start the same chemo (carboplatin/gemzar) since it has worked very well in the past. BTW, I only lost a little bit of hair.
Hugs,
Brenda
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Brenda - I'm sorry that it came back so quickly and am hoping that this treatment will once again kick the cancer back.
Gah, welcome, I got relief from pain and coughing just a few weeks after starting taxol. Stayed on it for 6 months and have now switched to letrozole. I hope that your treatment plan brings you good news quickly! Clare
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Gah, sorry you're having to deal with this. Mine came back as lung mets too. Terrible cough and SOB for four months before finally fuguring out what it was. Started chemo in January, and my symptoms improved dramatically in a very short time. And the PET scan results I got last week backed it up. :-) Whatever treatment route you go with, it' s good to know that there are so many options available to us these days, and I wish you all the best.
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gah,
It sounds as if you've had a fairly rapid onset of pain and SOB and I wondered if your doctor mentioned a pleural effusion? The liquid can be removed from around the lung on an outpatient basis (thoracentesis) and gives a lot of relief while you're waiting for your new treatment to kick in. My mets have been stable on anastrozole for more than three years now even though they were there at dx.
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Hi there CD -- I'm thinking about the possibility of a pleural effusion as well. I had a CT almost a month ago that didn't show anything in the pleural spaces, but I have a call in to my onc about the possibility. Does pleural effusion (and its associated pain) tend to come on so suddenly?
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