Lung Metz

[HopeinNJ]

I am new to this site. Looking for support and answers. I was diagnosed stage one, no lymph node involvement and a low aggression oncotype score in 2012. Visited Sloan Kettering in NYC. Everything was in my favor to be 100 percent cured. Post menopausal, very tiny tumor, Er Pr positive. Negative Her 2. A had a lumpectomy followed by radiation.

4.5 years later, a non productive cough... more like a “tickle” led to scans that revealed I had stage 4 metastatic breast cancer throughout both lungs and on a rib.

I have been given hope instead of a death sentence. I am responding beautifully to IBRANCE and Letrozole. I am positive for the most part, some days I’m down. I am working full time as a nurse educator and tolerating the meds. Just finished my third round and tumors are 50 percent decreased.

Anyone else with lung involvement?

Sloan said this never should have happened “only God knows why.”

I also found a retreat I’m going to if anyone is interested. For woman with cancer, 2 nights, on the ocean. 100 percent free of charge. Mary’s Place by the Sea. Ocean Grove NJ.

[nstonerocks]

Hi. You will love Mary’s Place. I went almost 3 years ago after finishing IV chemo. I have Mets both lungs. Am on Ibrance and letrozole and have been stable so far. I have a great onc at NYU and while I am a nurse also thank god not an onc nurse. I stay fairly well informed but too much info and too many stats start me down the rabbit hole. The toughest part for me has been the emotional side of it. I was a mess for the first few months and the first 3 years I grappled with depression and anxiety. I have finally leveled off for the most part. I work full time and have started to travel thru Europe. Planning these trips and traveling have been godsends. I have also gone on a retreat at Omega with Pema Chodron an American Buddhist nun. Her books and online videos have brought me calm and peace. I am going on another retreat in May. Hope you continue to thrive and be well!

[HopeinNJ in reply to nstonerocks]

Thank you! You are inspiration for me!

[HopeinNJ in reply to nstonerocks]

How long have you been on the Ibramce and letrozole, the whole time?

[nstonerocks in reply to HopeinNJ]

I was diagnosed w metastatic breast cancer to both lungs summer of 2014. After chemo with abraxane and good results I went on letrozole a few months after chemo. Then August 2015 or 16 I forget started on Ibrance . Sorry chemo brain??? Anyway my doc thought 3 of the lesions had grown a mm or two. My scans have been stable. I do get really tired sometimes but also get up really early for work and am not in shape. Sometimes joint discomfort. My hair looks like rabbit hair. I keep it cut short and have purple highlights for fun. I’m 64 and would like to see 70. I try to eat lots of greens and drink green juice. I feel better when I do. Of course I’d rather eat Oreos... I was severely depressed when I was diagnosed. I was in shock. I sat on my couch wrapped in a blanket shaking. Went to therapy . Am on Elavil and rarely xanax although in the beginning I took Xanax several times a week. I took a leave from work because of chemo tho it wasn’t so bad for me and because I didn’t and couldn’t face anybody. After a while I just exhausted myself with the fear and depression and slowly climbed out of it. I didn’t want to wait on that couch to die. I didn’t have the energy to stay in that heightened state of panic. I sought help on the sHARE hotline, thru yoga, therapy and close friends. I’m lucky to have a great husband. Check out Kris Carr’s website. She is a younger woman living with stage 4 cancer and has a wonderful website and online resources. I still struggle to be optimistic and fully embrace life. I was always kind of cynical and unromantic in my approach to life, so my personality didn’t lend itself to grabbing the bull by the horns and getting on with life so easily. I have learned a lot about myself and life in general thru this. I am changed in many ways. I wish it hadn’t been incurable cancer that made me change but am getting better in making lemonade out of lemons, so to speak. I appreciate everything and everyone so much more and am grateful for the wonderful things in my life. I took so much for granted before. I never thought of myself As myopic and self centered but I think I was a bit. It’s corny but everyday is a gift and just knowing that makes me want to be fully engaged in the here and now. Didn’t mean to sermonize. It’s a journey and I’m lucky to have lots of good support.

[HopeinNJ in reply to nstonerocks]

These testimonies help me so much. I’m encouraged and inspired. Thank you!

[HopeinNJ in reply to HopeinNJ]

Do you live in NJ?

[HopeinNJ in reply to HopeinNJ]

Looking for local support groups.

[nstonerocks in reply to HopeinNJ]

Yes. Central NJ

[HopeinNJ in reply to nstonerocks]

I’m in Northwest. Do you know of any MBC support groups?

[nstonerocks in reply to HopeinNJ]

No but you might find some if you google around. Or ask your oncologist or a social worker at the hospital? The American Cancer Society May also be able to help you find a group. Give some thought to what kind of group you want. Some are mixed meaning there will be people with Mets and without. There are groups for younger women and groups for all ages.

[nstonerocks in reply to HopeinNJ]

Duh! Before u changed your name I thought u lived in the Northwest as in Washington State!!! Haha. Call SHARE AND living Beyond Breast Cancer. They should be able to help u. Most hospitals have support groups. I have not had the guts to “out” myself in a support group yet. I would prefer one just for people with MBC. I think it’s a whole different gestalt than a group with women not facing the very different challenges of mbc. I say women tho breast cancer in men is on the rise.

[SeattleMom in reply to nstonerocks]

Bless you, nstonerocks, for sharing such inspirational insight!

[nstonerocks in reply to SeattleMom]

🙏

[NPmary in reply to nstonerocks]

Thanks to you and Hope for sharing. I am a nurse too (44 years, over 30 as an NP). I'm going to check the web site you mentioned. Take care, thanks again, Mary.

[Bluebird77]

Hi. I have liver mets but am also on Ibrance and Letrozole. I to felt shocked when I was diagnosed with mets, as I had been "cancer free" for 14 years after treatment for Stage2b breast cancer. It's been a year and a half but I'm still struggling with anxiety, fear, and acceptance.

Would you mind telling us more about Mary's Place by the Sea? I would love to get away but money's too tight.

Wishing you continued improvement and peace.

[nstonerocks in reply to Bluebird77]

Mary’s Place by the Sea is a beautiful retreat house for women undergoing treatment for cancer. It is one block from the beach in the small quaint town of ocean Grove NJ. The 2 day stay there is free. I highly recommend it. You will be surrounded and nurtured by the most caring women on the planet. There are different options like yoga reiki nutrition counseling. They have a website that describes it in detail. If you can get there, go.

[HopeinNJ in reply to Bluebird77]

Wishing you all the best as well. Great advances since IBRANCE came along!

[Halfpint2]

You sound like me. I was diagnosed in 2016 after being in remission since 2005. I’d even been told that I was cured. Mine metasticized to both lungs and pluera. Chemo shrunk everything to nearly invisible. I only have one 5mm nodule visible. I’m on letrozole and 125mg Ibrance. I’m very tired all of the time but otherwise doing very well. I’ve been stable for several months. I work full time in accounting. I’m also PR/ER+ / Her2-. My oncologist and internist both told me this was improbable. But ... here we are.

[HopeinNJ in reply to Halfpint2]

Thank you for sharing.

[Hort09]

Hi , I had a double mastectomy 10 years ago and have been on tamoxifin almost the whole time . In November after a couple of biopsies I had a lung wedge taken out and it was mestatic breast cancer . There are other smaller spots on both lungs that are probably cancer too but are growing slowly . I know after my first cancer diagnosis I just wanted to get it over with n get on with life this time I spent a lot of time crying in the night when I thought no one could see me . I have a great husband and kids who support me and still work . I also have fibromyalgia ( I know some people think it's made up or crazy but it's not) . I think this is one of the better places for people connect . Here for you anytime

[MissyAnn68]

Hi!

I was dx metastatic in 2013 with a spot in my lung, on my T9 of spine and a speck on my iliac.

It all went away (dormant) while on arimidex that year. I was good until january 2017. The lung spot showed up again. I tried Ibrance with Faslodex and i couldnt tolerate it. In May i started Kisqali and Femera (Letrozole) and my scans showed a constant "stable". By december I was not tolerating the meds again and in january this year my Onc did the usual CT scan. It showed no uptake and stable. Then my Onc did a PET Scan and it showed no evidence of active cancer. No evidence of metastatic disease. I still take Letrozole. I see my Onc on Monday. I am floored by the result and have many questions for my Onc. I have a slight non-productive cough (which could be a tiny cold or could be from the scar tissue in my lung? I dont know).

Anyways, we will see what is what on monday.

So glad you are having good results on Ibrance! It has been helping so many women and for that i am so thankful!

Melissa

[Bluebird77 in reply to MissyAnn68]

So happy for you, Melissa! That is great news that you have no evidence of active cancer! Do you only have to stay on the Letrozole now? Please keep us posted after your oncologist visit.

[MissyAnn68 in reply to Bluebird77]

Thank you! I am still in disbelief!

My onc said if it was under a certain amount of uptake we would just do letrozole and see how it goes. So since there is no uptake im sure i will just take letrozole i cannot wait to see her tomorrow. I have questions!

[meshare]

Hello 92677,

I’m so sorry to hear , I too have a similar story but 14 years between initial diagnosis and recurrence . By the time of second diagnosis in 2013 it reached lungs, spine , hip , and now Mets in liver. I have been on multiple treatments already, none with total response. I’m also a nurse with an oncology background , which doesn’t necessarily help. I stopped working so I can concentrate on my health. The difficult part is more emotional than physical . Staying positive is key and that is easier said than done. Planing anything for more than 3 months into the future is impossible yet I believe that staying very active and busy helps a great deal. I savor every day I wake up in the morning even though realistically I know that tough times are coming.

Use every resource you have , I recently attended a United For Her event , if is a wonderful organization that gives 8 weeks free of charge sessions of Acupunture , oncology massages , reiki sessions, therapy sessions , diet help and free organic produce . If they exist in your local area find them and attend , it’s helpful.

This here is a source of great information and support and while I rarely post a comment I always read the posts and am amazed at how strong and resourceful people are.

I wish you the best and hope you enjoy the retreat.

[HopeinNJ in reply to meshare]

Thank you so much! I wish you all the best.

[meshare in reply to HopeinNJ]

Yes, do it! It’s similar to Mary’s Place but they connect you with local providers in your community and you get 12 sessions, you can pick and choose your sessions . They are really wonderful .

[HopeinNJ in reply to meshare]

I also looked into United for Her and there’s an event a few miles from me in May! Thank you for this wonderful tip!

[nstonerocks in reply to meshare]

Me share

I am a nurse also tho I can’t imagine how being an onc nurse makes this so much harder. I do not do much research on my own because negative info puts me in a tailspin. I have a good oncologist and she handles the clinical end of things. It’s a lot of work to deal with the emotional impact of this, as you said. That and trying to eat well and live healthfully is my focus. I have found things that help me cope like meditation, Buddhism especially Pema Chodron and her books (When Things Fall Apart, etc) my pets , travel. I am lucky to have some resources and a supportive husband. I make an effort to count my blessings. I have my white hair streaked with purple to keep things light and fun. Who knows what’s down the road. I try to focus on the now and near future. It is sooo hard. Hugs and best wishes to you.

[Epinto]

Sorry to hear about your re-occurrence! It is shocking and scary but it sounds like your positive attitude helps! I am also being treated at Sloan . Would love to learn more about that retreat!!!! Stay positive!

[HopeinNJ in reply to Epinto]

Google Mary’s Place by the Sea. It’s a non profit respite for woman with cancer. They are very responsive to messages and they will have you scheduled after your first conversation. Keep me posted on your visit.

[Epinto]

Thank u. Will look into it

[Mcap]

It's good to hear others are doing well with lung mets. Gives me hope. I've spent a lot of time looking online for information on breast cancer with lung mets. Mostly I've found information about bone mets. It's early in treatment for me. On 3rd cycle of ibrance with letrozole. I haven't yet had my first scan after start of treatment. For me being de novo, I still have my breast tumor. This has been a bit depressing. It's a constant reminder of my disease. Hoping to see some shrinkage in it and lung nodes. Mary

[HopeinNJ in reply to Mcap]

Hi Mary, is it in both lungs? I found an article that said metastatic lung involvement was the most common. I always thought the bone was. I was surprised to read that. Wish I remembered where I read it. Keep us posted on your progress. I have a friend that was also De Novo to lung. Diagnosed 4 years ago before IBRANCE. She’s doing well!

[Mcap in reply to HopeinNJ]

I have 10 to 20 small nodes in my left lung. The biggest being biopsied was 9mm. Glad to hear your friend is doing well. Right now I guess I feel like I have two strikes against me. The fact that it was found de novo and that it's in my lung. From what I've read that makes my prognosis worse. I will keep you posted please do the same.

[Clair19]

I know this was 6 months ago but I just saw this. I want to praise you for working with lung mets!! I have in only one lung and get out of breath at times. My question is do you have problems breathing? I’m also a Nurse but Geriatric Nurse. I took Chemo for 6 months and then tried Ibrance but Neutrophils went so low at .5 and took forever to rebuild. So Faslodex at the moment and pray it stays about the same. I’m Her2 Negative, I think as she was on the fence between negative and positive. Let me know how your doing!