I had a CT last week and was able to see the radiologist's report at the patient portal. No progression noted and a bit of bone met shrinkage in a couple of spots so good news. But then it goes on to suggest that I have pneumonia. I do have damage at the bottom of my right lung from the Ibrance I was on for a few cycles in 2016, something called Interstitial Lung Disease, which is not mentioned. So I am wondering how much info the radiologist had and I am putting much trust in that part of the report. I left a message for my onc about this and also my pulmonologist. I've learned alot about self advocacy in the 16 years I've been dealing with MBC !! I'm extremely lucky to have done so very very well, but I am still a mess physically with a list of diagnoses and specialist docs that is too long! lol But as bad as my body is, mentally, psychologically, spiritually, I'm in good shape! I had broken my left ankle and have bolts and screws there, as well as in my lower back. My skin is broken out and I've seen dermatologists and now an allergist but the itching comes close to driving me bat-sh** crazy! My strength has faded, I am tired, and not able to do several of the things I most love: reading, gardening and bicycling. But I can still love my husband and our daughters and granddaughters and my friends and my brother. This self isolating due to the coronavirus hasn't changed my day to day life very much, except our kids can't drop by and we have to think hard about going to the grocery store. I wish I could tell you how I keep my life in balance but I don't have an easy formula. I don't fret over things I have no control over and I don't fear death or the dying process. That probably helps alot! And I am pleased that the CT results were good. In 16 years, I've only had progression twice and am on just third line treatment. Please though, any one on either Ibrance or Afinitor, if you develope lung/breathing difficulties, call your onc immediately, like 2 am Sunday morning immediately! Both those meds can have extremely serious side effects in the lungs. I'm not sure that is stressed enough by oncs.
Do well, stay safe, and find peace within yourselves.
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PJBinMI
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Thank you so much for sharing your good news with us. Something wonderful to celebrate despite all the sad news these days. I was diagnosed stage 4 de novo last May (told I had early stage cancer April, then they amended that right after my PET/CT), and it gives me hope that I can outlive my original prognosis of “maybe two years” by SEVERAL years.
I do hope you continue to do well and that the “pneumonia” turns out to be scarring from the interstitial lung disease.
Like you, I was told I did indeed have bc, on March 1, and later than month was told I had bone mets = stage 4. Started treatment April 2. I don't remember what I had for lunch yesterday, but those dates seem to be etched deeply into my memory! I call March, 2004 my month from HELL! And use alot of humor whenever and whereever I can find it! No I did not have a mastectomy. At that time, mastectomies were not done routinely for those of us diagnosed at stage IV as they were not associated with longer life expectancy. So, I figured, okay, I get to keep my breast but not my life. I did have a lumpectomy and clear margins were not possible as it was highly invasive. I have lobular bc, which tends to be very stringy rather than lumpy.....it forms strrands just one cell thick and can be very hard to see on scans. MJ, nobody should be giving you a specific prognonsis! NObody knows how long any of us will live. Some of us do really well. And the median survival time is pulled down by those whose cancer is very advanced at the time of diagnosis, those with highly aggressive cancer cells, those who can't follow a treatment plan. And there are not solid stats about how many of us are living with mbc. In the years that I have had mbc, I've heard of and met alot of long termers. At the first conference I attended, MBCN, there was a woman who had been living with mbc for 30 years! There is at least one member of this on line group who has been living with mbc longer than I have, maybe more than one (there's that lousy sort term memory again!) t6666666666666666666666666666666666666666666666666666666666666666666
That line is from my cat, Al, who just sat on the keyboard. When he wants attention, he is very hard to move! lol Anyway, I was about to say that I'm not concerned about pneumonia. What I wondered about concerning my lungs and the CT was that the radiologist doesn't know about the ILD and isn't tracking it. I did complain to the local rad dept and was told that's a doctor to doctor issue, so I left a messsage for my onc and did send a note to my pulmonologist (one of my favorite doctors and a real cutie pie!)
I used to have a primary care doc, an internist who'd trained at Mayo Clinic, who looked alot like Donny Osmund (Donny was much younger then, as I was, too, lol) . I wish he was still my primary care doc! Besides being ultra good looking, he was kind and very knowledgeable. Some women didn't want to see him because it made them uncomfortable to take their clothes off and then have this gorgeous man in the room! Their loss, lol!
Thanks so much, both for sharing your good CT scan news and for the reminder not to worry about things we can't control. Just what I needed to read today! I came to this site today for encouragement because I'm on my third day of feeling like a wet dishrag after chemo last week....but I know it will pass, and the chemo is doing a great job on my liver mets, and I don't HAVE to do anything. Except maybe feed the cat.
Wow, 16 years and only two progressions. That’s amazing and so hopeful. By the way, I don’t mean to trivialize your progressions by saying “only.” I know every progression is like a kick in the gut. I was diagnosed w/bone mets in Dec 2018 and have had progression twice since then.
Would you mind telling me what your treatments are now and if you use any supplements, etc?
I was on ibrance until it stopped working and about to start Afintor this week. Thanks again for sharing your story.
Just a thought from reading your note. If you haven't seen a bc specialist onc, it would probably be worthwhile for you to do that. IF you are in the US, the best place to go would be one of the Comprehensive Cancer Centers listed on the website of the National Cancer Instatute. Some general oncs don't have much experience with mbc and get anxious about things that a specialist knows can be ignored or waited on. Your own onc should be supportive of that and should be able to arrange it. I've done that twice, once after initial staging and then again after my original onc retired about two and a half years ago. Both times it has been very worthwhile though we've had to drive about 200 miles each way. The first time, I could feel my husband and daughter's tension ease up and leave the room as the specialist onc talked. that alone was worth it! My new much younger less experienced onc knows the specialist I saw recently and I know that I can ask her to talk with him about any decisions that come up. That gives me alot of reassurance about seeing her. She's ordering alot more scans than my older wiser onc did. I'm not used to having CTs every time I see her.
Hi PJBinMI, thanks for your note. I currently go to the the Dubin Breast Center which is part of Mt. Sinai in NYC. I could have gone to Sloan I guess, but chose not to. I'm not sure if Dubin is included in the Comprehensive Cancer Center, but it does offer all the treatments related to breast cancer. I found your comment interesting regarding a specialist vs. general onc. Did you mean a specialist in MBC vs. general breast cancer oncologist? To be honest, it didn't dawn on me to seek an MBC specialist since my onc has other patients with MBC. Now I wonder if I should seek one out...
In any case, when I was diagnosed w/ mets to the bones, my onc ordered scans every 3 months. The scans showed stability and after the 4th scan showed the tumors barely seen (she never said NED), she ordered scans every 6 months. It was after the 6 month scan that it showed progression. But instead of taking me off Ibrance/Arimidex, she took me off Armidex and kept me on Ibrance but combined it with Faslodex. We wanted to see if Ibrance would still work with that new combo. The scans (after 8 weeks) showed a little more progression so she took me off of Ibrance completely. She ordered a Foundation One genetics testing and it showed that Everolimus was the recommended treatment for me so this week I start on Everolimus with Faslodex.
Congratulations on a report that has good news in it! That’s the important thing here!
Is there a radiologist listed on your report? I would guess it is somebody that hasn’t read yours before and doesn’t know your history, so saw something in your lung and called it pneumonia. Unless you are having symptoms that you don’t normally have like fever, coughing, and other symptoms of pneumonia, you probably don’t have it. You should check just to make sure, but I don’t think I’d fret over it.
That’s my 2 cents worth! I hope I’m right, but like usual, we aren’t the docs. I’m sorry for your loss of energy. It’s what I miss most about this disease, my sense of capability and energy. I can still do most things that I want to, but it takes longer and sometimes I pay for it with a few painful days. Hugs!
Thanks. I'm not worried about the pneumonia comments in the CT report. I plan on asking my onc if I should ask CT techs to mention my lung condition in their notes to the radiologist. I see a pulmonologist regularly now, and he has been really encouraging. I use two inhalers and was already using a Cpap at night before the lungs got damaged. I get out of breath easily and with the fatigue from all this long term stuff, those two things have really taken me down hill. Sigh!
I do agree with you about the self advocacy.. I am so grateful that I am able to do so.
Ibrance stopped functioning after 2 years and the latest pet showed some progress including possible liver Mets
I have a ct scan schedule for May 5
He changed my meds from femara to aromasin and wanted me to start taking fastodex. My research showed that it was not recommended if there were visceral Mets
Given the Covid situation I wrote to him but got no answer
I am having a phone meeting with him tomorrow
He also wants me to take Piqray!! The side effects are miserable and it is effective for about 8 months.. in terms of taking it or not it seems as if the difference in progression is about 3 months... so I prefer having a good summer.... I have now been off Ibrance for 6 weeks and feel good ... apart from the pain in my spine
I want to live as opposed to being kept alive
I am not afraid of dying but I do fear the process... unlike you!
One reason that I don't fear the dying process is that I have seen alot of it! Starting with my mother's death in 1985 from lung cancer. I was able to be with her every day during her last six weeks of life and spent hours at the hospital once she was there for hospice care. I did not see anything at all scary. She was comfortable and able to talk-comfortable until the end and able to talk until the last few days and then again on the day before she died. Since then, I've done alot of pastoral care for the dying and their families and again been impressed by how well almost all have done in their last days and hours, especially those with cancer. And one of the "good things" about cancer is that it gives us advance notice and time to wrap things up, get out paperwork in order and say what we need to, want to, say to those we love. And it's easier on them than something like sudden and unexpected deaths from a heart attack, covid 19 or a car accident.
I love the part about not fretting over that which you have no control. And I don't know why but I don't fear death. I am so happy for my family, husband, (unfortunately deteriorating health) son, two daughters, a lovely son in law and a wonderful 6yr old granddaughter.
I’m glad you have made your peace with dying, I am more accepting now than I was on my diagnosis - I had very extensive cancer and probably don’t have 16 years.
I would be more philosophical if I was old enough to have grandchildren though.
My father died (of cancer, the same age
I was when mine was diagnosed) when I was in my twenties, so he never met my husband or kids, and it is a big source of sadness for me. My kids are in their early twenties and I am unlikely ever to meet my grandchildren and they will not have me with them growing up. I find that harder than anything.
I am so sorry! The one thing that makes me the angriest about breast cancer is that young women get it! So unfair, and as you know too well it has a huge impact on the whole family! My mother's whole family died before she met my father. Mom told wonderful stories about them and in some ways, I felt as though I knew them better than the grandparents I did know as they were not very communicative about things that matter. I was diagnosed the month of my 58th birthday and am 74 now. My daughter is 54 and my step daughters are 43 and 40, so they are all adults and doing well. My husband's first wife, the mother of his daughters, had MS and their daughters do not remember her except in a wheel chair. I feel really sad for them and my husband that they will have to watch another wife/mother deteriorate and die! At least now we have so much technology that we can leave videos of ourselves for our grandchildren, not the same as being there but something our parents and grandparents didn't have! I've been glad my parents died before I was diagnosed with cancer! I had extensive bone mets when diagnosed, in my spine, pelvis, shoulder blade and a rib. I have been lucky to have nice easy to manage cancer cells--wish I could share that with everyone with cancer! And I wish I could "donate" some of my time to younger women like you. I can't even donate blood anymore........ so much crap comes with this stupid cancer!
I wish I could donate some time... that is an amazing thing to say ☺️
I do try, and it does help, to remember that there are people worse off than me. Younger than me. Without access to healthcare, or without a loving partner or a stable income.. all of that helps.
Most of the time I’m fine. It’s just the grandchildren thing.
I’ve made things for my kids that hopefully they keep and say ‘your grandmother made that’. And videos, just ordinary stuff, on YouTube. It’ll have to be enough.
PJBinMI: Thank you for the sage advice. If people, like you, tell us what to be aware of then we can know what to ask our Oncologists or what to be alarmed about. It is very helpful.
I just read your note for the first time. Thank you so much for mentioning the importance of knowing what to ask our oncs! When I was first diagnosed, I put together my very own "cancer binder." I laugh about it now, but now I look back and realize how much it helped me cope with this lousy diagnosis! It really was "controlling what I could control." I bought the largest binder I could find, covered it in pretty contact paper, and got alot of dividers for it. The biggest section quickly became copies of all the blood and scan reports! And I made lists of questions for my doctors and took alot of notes during appts. I typed those up and had a binder section for those notes, plus one for lists of help offered by friends, one for pamphlets about cancer, bc, mbc, anything related. I carried that binder with me to every appt. And after less than two years, I had to buy a second binder since the first one was full. I stopped that quite awhile ago, like maybe ten. As I got more knowledgeable and more comfortable. But having all the info in one place proved very helpful when I applied for Social Security Disability. LOL I sent copies of all the scan and path reports when I filled out the forms and had an appt at the closest SS office. Anyway, from the perspective of now. when I've lived with this rotten cancer for 16 years, I know it took me quite awhile to get used to living with a terminal condition and to not focus on the terminal part of that every day.
Congratulations on your great scan report. I am on Ibrance and do have some breathing problem at times, but I also have asthma. I use an inhaler twice a day. Thank you for mentioning the possible lung disease associated with Ibrance. I will be more mindful of my breathing problems now. Praying for continued good scans.
Since being confined to home I've finally started learning more about the night sky. I have a great little guide book on visible stars/planets/constellations each month. To blow my my from all this coronavirus stuff, I play some games on casinor.com/ . I mix pleasant and useful
What is the name of the book about the night sky? I'd really like something like that. When I was about 4 and 5, I had a baby sitter who was a college student studying astronomy and she used to take me out to look at the sky and she'd name the planets and constellations for me. I wish I could remember those details. We lived in Berkeley California then and I believe she was a grad student. I remember a wonderful joyful feeling looking at the sky with her, and I still get some of that every time I can see the sky at night even now, about 70 years later! Wish I could tell that young woman what a lovely impact she had on me!
Erika - our adult daughter visited recently briefly. Massachusetts is a hot spot for covid. We came to an agreement where I placed a heavy blanket over her and gave her a hug. As the old saying goes, necessity is the mother of invention
What an inspiration you are to me PJB! I hope for 16 more years.....Thanks for the advice about Ibrance and lungs. I have asthma so will be careful if I feel anything new.
I love how positive you are ❤️ my nurse always asked about shortness of breath and other breathing questions when I was taking Ibrance. I wonder now if that is because Ibrance can cause damage. My ct scans show something on my bottom right lung and have since close to the beginning. My family doctor said that is likely scar tissue from a car accident where I had fluid around my lung but maybe it is damage from Ibrance.
I am amazed at you having 16 years and only on third type of treatment. I recently switched from Ibrance to Abraxane due to progression. Whatever you are doing keep it up. ❤️
I don't think it is so much what I am doing, but rather that I have a bunch of really lazy easily controlled cancer cells! Or maybe the exactly right oncs who have figured out just the best treatment. But that said, I do keep all my medical appts and have not missed a single dose of the cancer meds! lol Right now I am on a three times a day pain med and remembering dose #2 is a real challenge! I have missed it several times.
I have daily pill containers for all my meds as I wouldn’t remember what I had taken. I even put my antibiotics in them as it’s four times a day and there is no way I would remember them. Lol
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