mets to lung
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maedchen, when I read your post it made me so sad. You are so young, too young, to have to be dealing with this. I was first diagnosed with bc at 37 and am now 65. My recurrence was in 2008, eight years ago. I though stage IV meant I was near death but my doctor said I could live ten years or more. Of course I didn't believe him, but here I am. I am also ER+ pr+ her -. You can see from my history the many different treatments I have been on, My oncologist had me on hormonals for the first three years then chemo for the next five. He has just put me back on a hormonal to see if it will work for me again since I have been away from hormonals for a number of years. Believe me, I look forward to the break from chemo. I do have coughing spells from time to time but not as much as I would expect with having lung mets. Mostly when I lie down to go to sleep. I end up sleeping on several pillows so that I am at an angle. I like werther's caramel candies and carry them I my purse to help with the coughing. My biggest problem is from shortness of breath. I can't walk and. Talk at the same time, sometimes I have to rest after doing even the most simple chore. Stairs are difficult. But I carry on. I spend as much time as I can with my grandchildren and my friends and family. My sister prays for a miracle for me. I think eight years is pretty miraculous and I am not even close to checking out! Who knows how long we will live? No one, really. But they keep coming out with new treatments or theories about different ways to use the old tried and true drugs. We may still be corresponding in in five more years ... Let's go for it! my best wishes to you, Maedchen, and all of us with lung mets!
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I have gone through periods when I do different things to "help" the conventional treatments and sometimes I just say to heck with it. I haven't been consistent at all. I do drink smoothies for breakfast, prob about 5 times a week. I use ensure, fruits, cinnamon and turmeric and sometimes kale. For a long time i ate a cottage cheese, flaxseed oil, fruit mixture for breakfast but i got tired of it and switched to the smoothies. I also take something called ambrotose (dr. Ben Carson recommends it but probably gets paid for the endorsements) that is supposed to boost my immune system. I get it through the mail. All I know is that I was getting bronchitis at least once a year but since taking it (about a year), I have not been sick (other than chemo side effects). My husband has heart issues and he has been tha cook for the last few years. He cooks very heart healthy meals and i think that is a big help for me also. Everywhere you turn someone is giving you advice about this or that. I think in the end you just do what feels right for you.
I took tamoxifen and femara for about ten years following my first bout with BC. My gyn told me she thought I could quit as the research at that time said 5 years was the recommended time. Wouldn't you know, within a year of stopping I was diagnosed with mets in the lungs. Goes to show, you just never know! And we are all so different! The good thing is there's no self blame when you know the results are so varied! We just keep doing the best we can do. Keep hanging in there
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Hi all,
Can I jump in and join this tread please?
I was recently diagnosed with TN lung mets (multiple nodules scattered throughout both lungs) as well as multiple enlarged supraclavicular and mediastinal lymph nodes and small pleural effusions on both lungs and in the pericardial area.
I've just completed my first cycle of Abraxane and Avastin - each cycle consists of Abraxane once a week for three weeks with Avastin on week 1 and week 3. I then have a week off. I start my next cycle this coming Wednesday. Once cycle 2 is completed, we will do another PET to check on the progression and if the treatment is working, I will carry on with this delightful cocktail for another 4 to 6 cycles. If its not working, we'll move on to something else.
I look forward to getting to know you all.
Have a good Sunday
Di x
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Welcome Dix, I do not post often but wanted to say hello! I too had multiple mets in both lungs and supraclavicular and mediastinal lymph node involvement. My cancer is ER+, HER- so I do not know a lot about TN. When I was first diagnosed in November 2014 I asked my MO if I could do proton therapy to the chest. I had a condo right by the proton center and had been hearing all the good things about it. MO was not onboard and said it would not work. Well I did not like his doom and gloom attitude at all (he gave me 2 yrs to live) so I decided to leave him and find a new MO. Before getting the new MO, I went to the proton center to inquire about treatment. Long story short, they accepted me and treated me with proton to the chest area. The proton completely eradicated the cancer and it has not come back. When I got a new MO, I was already set up to start proton. She did not like the idea either...who knows why but she was not going to stop me. Proton is not the standard care of treatment, so they will not offer it. I wanted to reduce my cancer burden in case the meds did not work. I am glad I did because the first treatment did not work. I knew the proton center could not do anything for the lungs, but I just wanted to rid myself of the chest mets so it would not continue to spread. My lung mets are now gone thanks to Ibrance/Faslodex. I don't know if Ibrance is approved for TN but I did read where someone who was TN was on it.
I pray your AA combo works for you, but just wanted to give you some hope that there are plenty of other treatments out there that MO's do not consider.
Have a great day and again welcome and sorry you have to be here.
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Hey DIx,
You can jump in on any thread that you find interesting. I have a few bookmarked because I don't have time to read every thread, it would take for ver because there are so many of us on here with different issues, different treatments, different diagnoses! I started reading in the site when I retired about 5 years ago bpthough I had been diagnosed stage IV three years before that, I had no idea just how much help was right at my fingertips, BCO has been my lifeline. No matter what I had a question about, there was someone here with the answer, you've found a great place, I was treated with abraxane but not the abraxane avastin combination. I can't remember right off why I stopped taking it. For now I am back on a hormonal treatment. Scan on sept. 1 will let me know how effective that has Been. If you've been reading much, you've probably noticed we receive treatment til it doesn't work anymore or the side effects become too severe, then we try something new. I've been doing it for Over 8 years now and still hanging strong. Sorry you've had to join us but you will love these ladies and the help they will be to You
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Hi Dix - we are all here to support you. I was dxed Xmas 2015 with mets to sternum and left lung. After 4 rounds of Ibrance+ faslodex the nodule in left lung is gone, but I still get monthly thorocentisis (draining) as pleura is affected. I will get my next PET on Thursday after round #8 and will share results. So happy for Robin (Rpoole) to get great results! FYI I am ER+/PR+/Her-, so not sure if Ibrance is a possibility for you, but please ask your onc. Please get second opinions too. I am being treated at UCLA where the Ibrance studies were conducted. Meadchen - welcome! I take vitamin supplements too. (())
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Lalady1, Glad your having good results on the Ibrance/Faslodex combo. I hope you get even better results on your upcoming PET!
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Wanted to bump this thread as it hasn't been active for awhile.
Last active tumor left is in my lung. Had it cyber-knifed back in June and hoping for good scan results the end of October. Still on Xeloda. Almost two years and tolerating it very well.
How is everyone doing?
Hugs, Susan
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SusaninSF,
Happy to report that my lung mets remain metabolically inactive, according to a scan in the summer. I do have SOB sometimes on exertion, but it's probably due to allergies/asthma/COPD/weight/general deterioration due to age. No medical professional is fingering the lung mets as the culprits.
Tina
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Hi Susan, nice to see you. I have been holding steady on herceptin & perjeta for about two years now (5 1/2 since mets Dx). Was NED for a while, then went back to two tiny boogers in my lung per the June scan. Doc says "not significant" - I'll take it! Best to you, SUE.
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I finally have both pleurx catheters removed and now can go swimming. Breathing well also and my blood oxygen is good. I certainly feel a lot better than last year this time!
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hi everyone! I have been stable for past 6 months. Still feeling great!
Julie
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Wow! No wonder this thread hasn't been active! Everyone's seems to be doing quite well.
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I am so happy to hear the good news about lung mets since that is where mine showed up after 25 years. My first scan in March showed much improvement and the next one is coming up on October 7, and I'm having major anxiety about it. I haven't seen anyone else here on the Ibrance/letrozol combo that I'm on and lately I've been seeing that Ibrance is starting to fail several women after a number of good months. Naturally that increases my anxiety a lot. So, hope we hear from more women with success stories, especially if they are on the Ibrance/Let. combo
It would also help a lot if everyone would fill out their treatment plans in the biography section. we can then see how relevant they are to our situations?
Wishing everyone continued stability and good health.
Faith (in the future)
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I am on letro/ibrance. I had a enlarged lymph node in my lung that was positive for breast cancer. I also have a number of nodules that the docs are not sure if they are cancer or not. The 2nd opinion I went for said 99 percent chance they are cancer but my own onc is now saying they may not be. The lymph node is now back to normal after about 10 months on this tx. Nodules look basically the same. Onc says I am NED as she does not think the nodules are cancer. I am not totally sure on this so I am too nervous to feel real comfortable saying I am NED. But at the very least I am stable. I have been on this tx for a year now. Next scan is Oct 28th and I look forward to continue hearing good news😊
Praying for stability and NED for all of us!
I was at a MBC conference over the weekend at Dana Farber in Boston. The head of the MBC program stated that he believed in the next 15 to 20 years MBC will no longer be a terminal illness. He stated that maybe this could also happen in 10 years but he felt pretty confident in at least 15 to 20.
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My recent CT scan shows slight interval improvement over my last scan in May, which showed marked interval improvement compared to the scan in February. Headed in the right direction still. I am blessed.
I have been on Faslodex only since original diagnosis 9 months ago.
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Hi there I am new to this and am hoping to find some advice or experience that would relate to my mother's diagnosis.
Mum (now aged 66) was diagnosed with Stage 3 HER2+ breast cancer in 2012, she had a mastectomy, chemo (Taxotere/Docetaxel), radiation therapy and Herceptin, and she has appeared to be cancer free until now. This week she has been diagnosed with metastatic cancer in the lungs, she is breathless and has lost her voice. She is going to have the fluid drained and then the oncologist has advised that the usual treatment would be another 6 rounds of the chemo (Taxotere/Docetaxel) and then Herceptin every 3 weeks for as long as she is alive, possibly in combination with Perjeta - though we live in New Zealand and that drug is currently not funded here.
My question is about the chemo drug Taxotere (Docetaxel). When she underwent the chemo therapy in 2012, the Taxotere had a profound affect on her short term memory - causing severe "chemo brain" (she can go and see a movie and if you ask her on leaving the cinema what it was about she may struggle to tell you), and it has never really improved since that time. I am concerned that if she has to undergo another round of this drug it will cause even more brain problems, leaving her unable to appreciate or enjoy the time that she has left.
Has anyone decided to fight against a metastatic cancer using JUST Herceptin and/or Perjeta and NOT done the chemo drug? If so what has been the experience/success? Or does anyone know anything about the Taxotere (Docetaxel) causing these memory issues and if there is an alternative chemo drug that they believe is better? Any insights much appreciated
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Jen878, I have no experience with any of the drugs you mentioned but here in the US, a lot of stage IV ladies who are ER+PR+HER- are using the new drug Ibrance with Letrozole for hormone suppression. I'm not sure if it's only for treatment as a first line but if the drug is available where you are, it's worth asking about. The side effects are fairly manageable. Good luck to your Mum.
Faith (in the future)
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Hi Jen876
I am sorry as I have not had experience either with the drugs you mentioned. You might want to post questions about the chemo in a chemo thread and a hers2 positive thread for the other recommended target treatments. I hope you can find more help and feedback there.
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Hi Jen878 - I had 6 rounds of taxoterrible plus cytoxan during my initial stage 3 BC - brutal, but I am in my 50's so tolerated it better. Yes, it will help with lung mets, but you should ask about ibrance and/or faslodex which are less toxic, but respond better to Her- ladies. I'm on round #11 of ibrance and still working full time. Your mum needs quality of life too. Singlemom's advice is very good. Rooting for you!
Claire
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Can someone please explain to me why I, an actual Stage IV patient, get no response to my post, not even rah-rah from the Moderators, yet someone who is not Stage IV and it clearly given instruction to not post in this forum at all and is given information about where to post with questions about Stage IV or as a family member or caregiver get multiple responses that are not directions of where to appropriately ask a question?
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I'm so sorry GoodbyeGirl.
I don't look here too often anymore as I recently had progression (LM - Leptomeningeal-mets & liver- which atm is a bit more scary to me than the lung mets).
I guess everyone somehow missed your post. I'm so glad that you have had improvement though! I'll celebrate with you, and I'm sure the others do too.
It's great that faslodex is doing its job, I hope you get a very long run with it xx
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I am so sorry for your progression. I can understand how this is more frightening than lung mets alone. Thank you for celebrating with me my improvement, however fleeting it most certainly is. You are in my prayers for comfort and easy of mind. (and I really do pray and really to attend service! You will be in that.) Thank you for caring.
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And thank you for caring about me kt1966. I will care about you, too. Your post means a lot to me. I feel very alone here. I wish I was only concerned about me as a family member, but this is not that. I am glad this is not about my mother, or any other family member because I happily stand with that arrow piercing me instead.I wish it on you also.
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Same to you GoodbyeGirl.
I'm quite happy to deal with this rather than see someone I love have to do it, tho I know it's hard for family & friends to have to watch etc.
Take care, I wish many more improvements to come your way.
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Goodbyegirl - this thread has not been as active as the ibrance or faslodex posts. Very good news for you indeed! I am on round #11 of both, and doing ok. Do you only have lung mets? Your profile doesn't indicate your current meds. I find faslodex easy - only wish Ibrance was. Which hospital is treating you? We care!(())
Claire
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Goodbyegirl, I'm sorry we all missed congratulating on your good news. It really is something we love to hear. It gives us all hope and we all need that. I have lung mets and right now am dealing with a lung infection. That kind of thing can wear us down and your news gives us hope. Thank you for sharing!
Faith (in the future
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Hello everyone. I have lungs mets since June 2015. I just finished doxil and it gave me horrible HFS with blistering. The doctor said it was the worst case of rash and HFS he had ever seen, so he is switching me to abraxane weekly for 3 months and then he will do another scan. My question is.....Has anyone worked while on abraxane? I cannot afford to quit and I am worried the weekly chemo versus my usual monthly is gonna kick my butt. Thanks.
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Hopeful, I was on taxol for my lung mets until it stopped working. I found it quite doable & could still work.
(Abraxane is the same active ingredient, but in a gentler carrier than the taxol one)
The main se's for me were a bit of neuropathy in my fingers & toes and watch your fingernails- it's a good idea to wear an opaque nail polish to stop light getting to them or they may lift.
All the best
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Thanks kt! That is great to hear. I've been stressing about it
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