I've been living pretty well with mbc for a bit over 14 years and have seen alot of changes in the world of mbc during that time. I have bone mets only and have never had symptoms from them and have never been told to limit my activities due to that. I am, of course, 14 years older (72) and much tireder! Last time I saw my onc, in March, she suggested getting Foundation One testing done to see what that would add to what we know about the cancer cells I am dealing with. I have invasive lobular bc that has been estrogen receptor positive and her2neu receptor negative all along. It started out progesterone receptor positive but sometime a few years ago became negative for that. My onc went on an unexpected leave not long after that meeting with her and though I have phoned the clinic where I see her, I was not getting the info I needed to know if this further testing was getting done. Yesterday I called the cancer center admin since I wasn't getting what I needed by talking with folks at the satellite clinic where I am treated. The boss onc of my onc has called me twice now and has followed up and made sure that the referral for Foundation One is getting done. I also asked him to take a look at the chest CT the pulmonologist had me have earlier this week. Since I have lobular, my own onc has always looked at scans etc herself rather than just relying on the radiologist's reading. So he has seen the report and is requesting a CD of the scan itself to look at for me. The report is that my lungs are stable. (pulmonologist diagnosed "interstitial lung disease", which he described as gunk between the air sacs. I think it was caused by the Ibrance I was on for 10 cycles in 2016) When things like this happen, I am grateful to be an "educated patient" who can advocate for myself and I worry about what people with less spunk and less information do! The system is hard just when we are needy and vulnerable! I am tired, worn down, and my short term memory is a joke, though I think my brain just created a new synapse for solving sudoku puzzles! lol Crazy way to live and so much better than the alternative! But we have to be feisty for ourselves!
mbc patient and patient advocate, cat... - SHARE Metastatic ...
mbc patient and patient advocate, catching up on genetic testing options and advocating for self even when tired and sick of being tired!
Your words ring so very true to me. I am educated and continually needing to know as much as I can concerning this disease which I have lived with for 20 years but truly for 60 years with my family. I ask a ton of questions and have lots to say during my onco visits. I do think that annoys the doc and nurse but they try hard to not seem that way. I don't care. I ask when I have a thought or question without apology. We MUST be our own advocates!! Yes, yes, yes. This site is so very helpful to all of us and comforting when needed. Thank all of you sisters. To take some final words from Charles Krauthammer, Live the life YOU intend.
My onc has always appreciated my questions! One reason I trust her so much! At this point in my life, I "fire" doctors who are condescending! lol
Yeah I get that. I am at Lombardi Georgetown and have had this onco for about 17 years. He is very kind but not my special kind of doc. He has been doing nothing but breast cancer onco fir 45 years. I figure he will retire soon and then I’ll request the doc I wanted when dr Hayes, #2 in world, left Georgetown. Dr Hayes an Mark Lipman we’re responsible for Her2. They took their NIH research to Georgetown fir herceptin study. Interesting history that I was part of
Is that Dan Hayes? He's at U of MI now, where I've gone for second opinion. You were in the Herceptin clinical trial? That drug sure turned things around for those with her2neu positive bc. I have been very lucky to have an onc that is on the same page I am.
So you met Dr. Hayes! he is a trip!! Cavalier as he is, I loved him. I was only stage 3 at the time, and Herceptin in trial was only given to stage 4 patients, so my HER2 was never tested and tumor held for future testing should I need it. Well, here I am 20 years later and needed it and they couldn't find my tumor but also was told that receptors change, which really surprised me. So, I had my pleural fluid tested and they said I was HER2-. When Dan Hayes left for Michigan, I was assigned Dr. Robert Warren and he is very good and tremendously experienced as well. I was hoping for Dr, Claudine Issacs but that was the divide of patients. I have been followed up by Dr. Warren for years now, so an automatic get in to see him immediately when rediagnosed the end of 2017. Dan Hayes is my age, 68 and Dr. Warren is about 74 maybe 75. The two had a conversation in San Antonio about retiring but I assume Dr. Warren is closer to that call. Now, what was said about retiring, i have no idea.
I had a really tough time when Dr. Hayes left as you can image. I always felt he threw me a life vest when in emergency which I came extremely close to dying while on taxol. Of course, I know he was not the one keeping me alive, but all the same. So, did you actually see him? Where was your first opinion? Do you live close to the university?
I just read or reread your note--no, I did not see Dan Hayes. My onc wanted me to see either him or Anne Schott and I saw her. I liked her and when she did the breast exam, it felt like she had radar in her finger tips! Unlike any breast exam I'd ever had before. She knows my localish onc (who just retired, much weeping and rending of garments!) and thinks highly of her. I'm a long way from U of Mi -- well, not as far as I could be within Michigan, lol. But too far to comfortably go there all the time and there is an ASCO certified cancer center an hour from me so I go there.
Hope you are doing well.
Wow 20yrs - do you have any diet / lifestyle tips? Or just how not to be depressed. X
Thanks for the inspiration, education and hope. ❤️
Sister/Warrior may God bless you to have 14 plus more years of joy. I thought I was/am a pretty intelligent woman, but I can't seem to figure out Sudoku puzzles, nor could I figure out how to navigate a Rubiks cube. I could go on You Tube to figure these puzzles out, but It is not a priority in my life right now. Still thanking God for the things I can do. Amen XoXoXo
Hi, PJBinMI! Congratulations on 14 years w/bone mets! I, too, have that diagnosis and you give me hope, as I'm only 18 months into my MBC diagnosis, but I've been able to lead a very normal life on Ibrance and Letrozole. May that continue!
I am totally with you on being your own best advocate. It's the only way! One question I have for you is, what is Foundation One testing?
Thank u for asking that question. I also would like to know what it is. Be well and let’s carry on in spite of it all!!!!
Foundation One is the name of a company that does some genetic testing. When I was diagnosed 14 years ago, about the only testing being done routinely was for hormone receptors and her2neu receptors. Alot more is available now and test results can help direct us towards the treatment most likely to be effective for our particular cancer cells, and sometimes away from treatments not so likely to be effective. It's my impression that the latter is more common. Just ask your onc about what genetic testing is recommended. I could be wrong but I got the impression that Medicare has just recently started covering Foundation One testing. I found out more about it by doing a google search.
I had genomic testing done to verify that the best treatment for me was Ibrance. I take Anastrozole also and Xgeva quarterly.
Here is the link to Guardant 360 which is where my two tubes of blood were tested. Interesting read, the site explains the tests and what the results accomplish.
guardanthealth.com/guardant...
So far, Humana has denied payment to Guardant 360. The PA at my Oncologist's office said that most times patients do not receive a bill. If they do, it is minimal.
Best to everyone!
Janine in Folsom, LA
PJB, I'm relatively new here (10/17) and still "getting to know" everyone, but right from the beginning your posts stood out to me and have been an inspiration. I thank you for your advocacy and feistiness.
I hadn't heard of Foundation One, but when I attended the Wisconsin Metastatic BC Symposium about a month ago, Dr. Dennis Citrin of Cancer Treatment Centers/Chicago spoke on Genomic Sequencing. He was the only medical speaker who wasn't way over my head and I took notes. What he said:
- A gene is a blueprint and that gene mutations can be identified by blood tests.
- Genomic testing is a new option that identifies the biologic type of bc.
- In addition to stage and conventional positive/negative, every MBC patient should have genomic testing because it identifies which treatment s/b used.
- He also mentioned a new drug called Lynparza, a PARP inhibitor, that was approved by FDA in January 2018, but I kind of lost him there. I just found this link:
astrazeneca.com/media-centr...
I asked PA at my oncologist's office about this and she said the genomic testing is the next step if Ibrance/Letrozole fails and would be used to determine next treatment. My hospital has a new separate division that deals with this testing.
If you are in Wisconsin, do you know about Breast Cancer Recovery in Madison? They host retreats for breast cancer patients and for metastatic bc patients a few times a year. You can find their website by googling ..... I am in Michigan and attended one of their retreats for those with mbc several years ago. It was amazing. They hold those at a luxury spa that's in the woods and deer and other critters roam around. The food is exceptional. The retreat is very well managed, with emphasis on self care and getting the rest we need. The cost was reasonable and they offer scholarships for those who need them. When I went, there was a young woman who did not have alot of financial resources and she had never had access to this kind of facility before and she was over the moon happy about being there--she brought me to tears several times, the good kind! The room I was in had a fireplace, TV, whirlpool bath tub, multi-head shower and a view into the woods. There is an infinity pool, hot and cold spa tubs, steam room. Just being there was wonderful! They had an RN among the retreat leaders and she was well versed in oncology nursing and helpful to any of us who needed anything. Definitely worth looking into!
Yes! I am registered for one of their mbc retreats in September and really looking forward to it. I'm especially excited about meeting other mbc patients in real life. (I first heard about the retreats in an online group--not sure which one. In the beginning, I checked out a few groups, but this is the only one I continue to visit.) I believe the retreats are open to anyone, not just Wisconsinites. Here's the website for info: bcrecovery.org.
Did you know he was such a big deal?
Yes! I did not meet him, but I have heard alot about him. My onc knows him and she is very well thought of by the bc specialists there. It would have taken a long wait to get an appt with him, and it was just at the end of initial staging, so I saw a different bc onc but just knowing he was there was hope giving!
Hi, I just reread some of our notes from about a year ago and wanted to respond to a couple of things. My long time onc retired last Dec and my new onc suggested I go see Dan Hayes for a second opinion! He was wonderful, of course! He's only working 1/2 time now and isn't sure how much longer he will be doing that but my new onc knows him rather well and consults with him when she feels she needs to, so that is certainly a plus for her! lol Anyway, he thinks I have quite awhile yet. He also said if he'd been treating me he would have prescribed exactly what I have been ... so I left feeling very uplifted! And wishing I lived closer to Ann Arbor! lol. The other thing...you asked about the connection between Ibrance and Interstitial Lung Disease. I googled Ibrance just this week and on one of the sites with alot of info about side effects and results from a study done in Europe, at the end of the charts there was a notation that there are people who develop ILD while taking Ibrance. The two things that cause me the most day to day problems are the breathing problems from ILD and some gait an balance issues that I have due to a badly herniated disc that damaged the sciatic nerve and left me with neuropathy in both legs and feet. I have to use two different inhaled meds, orthotic inserts in my walking shoes, and I get winded both literally and figuratively easily. Sigh! But I am still here, still taking exemestane and Xgeva and my last bone scan and CT showed stable bone mets.
Glad you ssaw Dan!. He is quuit a trip, a bit caviller but I liked that about him. My onco is good friends with him and told me that he is going to retire soon. Funny thing is Dan is younger than Dr. Warren. Dr. Hayes is my age. How did that much time go by!!
So I am waitin for that shoe to drop and my onco to retire as well. I already have my ideas as to whom I want to use next. I just hope I can get in to see her.
I aslo stopped Ibrance close to a year ago and am just on letrozole at this point. Keeping my many alterative things up and prayers and positive energy, along with Chinese meds. So far so good.
Hi, PJB! Just curious as to why you stopped Ibrance after 10 cycles. What is your current treatment protocol? You have a great attitude about this "burden" we all bear. I do find that those "difficult" Sudoku puzzles keep my brain cells organized and activated, too! LOL!! Stay strong and inquisitive!! XO
I didn't tolerate Ibrance very well. I ended up with a lung condition called Interstitial Lung Disease that my pulmonologist described as "gunk between the air sacs." I also got a nasty itchy rash. I still have both over 18 months after stopping the Ibrance. I'm currently on Aromasin and Xgeva. I did have to take a long break from the bone meds as my bones became like bones with osteoporosis. That was discovered during back surgery that was not cancer related. The bone drugs have been real miracle drugs for those of us with bone mets but they are still new enough that not alot is known about long term consequences and best dosages and frequency for long term use. But people used to get multiple fractures, end up immobile and developed pneumonia and died from that! Now, we don't usually die from just bone mets. About my attitude--I've always been a glass is half full person, and this cancer is not the biggest challenge I've had to deal with in my life. I was a psychotherapist for 20 years and then went to seminary and was ordained an Episcopal priest. I have great inner resources! A sense of humor about cancer, too. Good family and friend support. Great medical insurance and quite a bit in one of those health savings accounts that is untaxed money. Oh, and my dachshund teaches me alot about living in the moment! And gives me alot of love. We have a houseful of dogs and cats. I've also had the privilege of being with alot of people at their deaths and what I have seen have always been calm comfortable peaceful deaths and I am not afraid of either being dead or the dying process. At 72, when it comes, I'm ready! I could not say that when I was diagnosed at 57! But my sense of humor really helps me find all the silliness and ridiculousness in living with this lousy rotten cancer.
Had no idea that you had gone through so many side effects on your road to the MBC version of "remission." But I am totally with you--glass half full, great family support, and the love of three rescue dogs. Life could be so much worse--I've never been a "Why me?" person either--it's all about, "Why not me?" Accept what life doles out and make it work. You are an inspiration, PJB!! Have a great week! XXOO
Hi there, do you have any tips for being positive? I’m 42 and really struggling. It sounds like you’ve had MBC for a while. Any tips would be great. Thank you x
Your cancer type and mine the same er+, hr+ her-, did you ever have any problems with your lymph nodes. The lymph node on the same side of breast cancer. Doc say my bone mets are healing, im almost 2 yrs out with no problems until this scan. He has ordered a biopsy. One is 1.7 cm and 2 others not 1 cm and he say pet scan was very dim when it light up. He say he's not worried about it
You are a breath of fresh air and I understand and have similar experiences with people as they pass away from this earth. It is pretty cool to see their faces at peace at that moment and renews faith.
I have had and been followed by genetic counseling/testing for 20 years. It was covered years ago with my insurance when 48 and post cancer and I had the most recent testing about 6 weeks ago and they were not sure if it would be covered by medicare/suppliment but it was. The information I was given was that Medicare may not pay for it because there is no actual treatment available on the market to deal with any of the genetic issues with the new testing that I had not previously had done, so as no treatment would be available they would probably not pay. But they did.
The real interest for me is not the genetic testing but the tumor sequencing. I had pleural effusion with this diagnosis and no other tumor sites. The extracted the fluid to determine my spread after 20 years so now IF I do not have any more spread, there is no tumor to sequence. Of course, if my fluid returns, then I could have that done. This procedure would not be covered by insurance and could cost about $500 but I believe it could be well worth the money to find out the REAL particulars about my personal cancer. That is still a question outstanding. I will have my CAT CT and bone scan done in the next month and see where I am.
Now, I am particularly interested in the lung condition that you have since Ibrance. Do they definitely attribute that to the drug? I have not heard that as yet and have not had time to research at this point. But, as my cancer returned attached to the lining of my left lung, this is of extreme interest to me.
For me, Dan Hayes was entertaining and quite an experience but I loved it. Strange to say!
Did the Ibrance work for you. I took 15 cycles and did great just fatigue. My her2 changed from negative to her2 positive. My onco put me on gemzar hecptin and progeta for 6 cycles then a pill most likely. Have you had to change meds alot due to progression?
I really don't know if Ibrance did me any good or not. I was on it for 10 cycles but started getting out of breath easily and having a terrible itch while on it. I think I was on it during year 7 of the 9 years I got from Faslodex. As a long timer with mbc, I think some of the newer targeted drugs used along with hormonal treatment are getting too much hype. They are still fairly new, long term side effects are not well known yet and the "extra time" they gave in trials was measured in months, not years. But I have a strong bias as the first good friend of mine to go on one died when her onc and pulmonologist did not make the connection between the new drug and the pulmonary crisis it caused her and kept giving it to her while in the ICU. That has been hard to let go of.
You are an inspiration at 14 yrs and counting. I have a question about this statement: (pulmonologist diagnosed "interstitial lung disease", which he described as gunk between the air sacs. I think it was caused by the Ibrance I was on for 10 cycles in 2016)
Why do you think Ibrance is responsible for your lung issue? I haven't heard of it having lung side effects.
Thanks.
Because it started while I was on Ibrance and I had not had anything like that ever before. My onc suspects it was Ibrance but can't say for sure. It has been stable since I went off the Ibrance. Obviously it could be coincidence but might not....... and I think some of the new drugs used in combination with older drugs are over hyped. But I have done well on the older single drug hormonals... almost five years on Femara, over 9 years on Faslodex now on Aromasin for just over two months. My pulmonologist tells me that I have "strong lungs" and I am fortunate that the ILD is only at the bottom of one lobe. How we do with lung issues depends quite a bit on the location within the lungs. Things in the bottom of a lung are less symptomatic than things higher up where they interfere more with the whole breathing process. The odd things we learn..........
Thanks for the insights. Coincidence? Probably not.
I have triple negative breast cancer that has metastasized to my bones. I am on xeloda 3000mg per day. I had foundation one testing done and my results were negative to all immunotherapies that are available currently. My oncologist said he was not expecting the results to show me being a candidate for immunotherapy based on the triple negative status.
How are you doing? I was just diagnosed with triple negative breast cancer that has metastasized to my bones. I am currently on Ibrance and Letrozole, but I understand from my oncologist that this is not the recommended treatment for triple negative bone mets. I am wondering what will happen next. How is your treatment going? What has been your best treatment so far?
As long as you have mets only in the bones, you will probably keep on keeping on! The bone meds have been true miracle drugs for those of us with bone mets--not that we will be cured but they are rarely lethal now. The challenge with triple negative bc is the limited treatment options. If you haven't seen a bc specialist onc, you might want to do that. Your own onc should support that and be willing to help set up a second opinion evaluation for you with one.
This is really great news! I really didn't know what to think when I got the diagnosis. I am scheduled for a CT scan and a NM bone scan in three weeks, and am really hoping the results indicate that I can stay on my current meds because I am tolerating them well. Thanks so much for responding!
I’m so glad to hear your a 15 year thrives of MBC. I’m only 43 and have stage 4 MBC from just finding a lump last April 2017. My first conventional drug treatment will be Ibrance & Letrozol(AI drug) mixed for best results. These drugs are not long term so I’m afraid they will not work for me for 15 years. Just hoping to work until something better comes a long.
What treatment are you on now and what do you recommend if you got MBC today verses 15 years ago? Your a true inspiration and I want to be there for my 7 year old daughter’s wedding and birth of her 1st child. Your story gives me hope. I’m looking forward to hearing from you.
I am tired from the cancer and I am also getting worn out by oncologists that are not doing their jobs. I was put on Exemestane a year ago by one of my oncologists. I have two, one is Las Vegas and one in Denver. Women with breast cancer in Las Vegas with breast cancer have a substantially lower survival rate than women anywhere else in the country. This was released in a report by NPR in December, 2016. Our doctors are less than adequate and our medical board is rated the worst medical board in the country. I have been complaining to both oncologists for months about my eyes and my balance. Neither had a clue as to what the problem was. I just found out on my own that on the info sheet for Exemestane that "If you have vision problems or balance problems, call your doctor immediately." Every time I saw them I told them and they didn't have a clue! My oncologist who ordered it didn't either. This is outrageous and so maddening to me. My balance and vision have been severely compromised but they didn't have a clue. I truly am thinking that I am better off not seeking medical treatment anymore. The cancer drugs, Fluvestrant and Ibrance did more harm than good. However, on Metformin, skin cancer on my stomach went away after one week on Metformin and after a month on it, it appears to be killing one of my liver mets. I am a borderline diabetic so this makes sense to me, yet both doctors insist that Metformin doesn't work. I wonder what drug company is putting that out there.
Strange 😱foot and hand side effects while on capecitabine/Xeloda. 
Answers received today
Weak and Discouraged 
