hello everyone- my name is Jenn I’m an MSK registered nurse and my dad was diagnosed with MBC last June of 2022 with Mets to bone. He has the BRCA2 gene which is what caused his male BC. He was started on Ibrance, letrozole, monthly lupron shots, and xjeva for bone Mets.
his PET scan last September showed NED and then his PET scan in January also showed NED. Next scan is probably in June or July. His tumor markers hover at about 20-25 range.
My question is: for those of you that have achieved NED how are you doing now? Have you had continued stability for a while? I’m trying not to think too far ahead but I want to keep this momentum going as well do.
I wish everyone the best of luck and health going through treatments. This site has been a huge support for myself!
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Jenniferp2122
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Hi Jennifer . I was dx stage IV idc (distant lymph nodes only ) in Nov 2019. My first petscan was 3/2020 and I had a great response (some nodes were resolved and others shrunk by 50%). My scans were clear or NEAD by 9/2020 . I still have quarterly scans and they have continued to be clear (so far ), I know this can change at any time. As you are a nurse I know you understand this as well . It seems like so far my cancer has stayed the same or homogeneous and has not developed somatic mutations so Ibrance and fulvestrant are working well . My tumor markers have never been elevated , even when I had dozens of cancer filled lymph nodes throughout my chest and neck . I hope your dad continues to have clear scans and I also hope he feels ok!
I feel like me and my family live scan to scan and I'm sure you can relate to that as well .
I am a MSK patient. Orig breast cancer in 2012; had lumpectomy and breast reduction. Dr Cody was my breast surgeon, Dr. Andrea Pusic who is now running plastics at a hospital in Boston was my plastic surgeon. In March 2019 one tumor in bone in my hip. Three rounds of targeted rads that April. Ibrance, Faslodex shots and Xgeva. Been NED since summer 2019. Scans every six months. Side effect is left foot drop. May be from rads. May be from a shot. No one is sure. Wishing your dad continued success!!
Hi JennYour question would probably be best asked of those in the same condition, ie with the BRCA 2 gene and preferably on the same treatment protocol.
despite having the BRCA 2 gene, he is still on the same protocol of anyone with hormonal positive MBC. The only difference is the drug lynzpara or Olaparib can be added one day.
As a male over 60, I had a 2x mastectomy in 2021 when I felt a lump. After mbc diagnosed (bones) almost a year later, in 2022, I was put on Ibrance, Fulvestrant, and Xgeva. This worked great, w/ no effects, for 6 mos. before my markers spiked and spiked even further a mo. later. I was set to start Piqray w/ Fulvestrant, Xgeva 2 mos. ago before changing my mind, due to effects, at the last hour. I am currently on chemo infusions, Taxol 150mg - 1 hr. 3 wks on and 1 off - and Xgeva. My sixth treatment is next week before my first scan after beginning the treatment.
There are treatments, Like Piqray and others, that target my particular mutation. I had a genetics blood draw at the center that was diagnosed by Gaurdiant 360 (may be done in place of a biopsy for many). I'm sorry I can't add more, I am an 'I don't want to know' type. There does seem to be many treatments, oral, inj, infusion. Some are successful for years, some for months (as I have learned here).
I'm glad to answer any questions you or Dad may have, best, Jim
Hi Jennifer, I was diagnosed stage 4 Bc mets to lungs in 2018 (no cancer history up til diagnosis) I went thru 6 months of Ac/taxol (infusion chemo) and have been on letrozole, Ibrance and the zolodex injection since may 2019. I've had no surgeries and have been NED since Jan 2020. I get scans in Jan and July. I do Not have the Braca gene.
Jennifer, I'm a long timer with MBC--diagnosed 3/1/2004 and "extensive" bone mets in spine, pelvis, rib and scapula. I worked inside the health care system as a licensed clinical social worker for twenty years and have some understanding about how things work, record keeping, etc. In the 19 years I've had MBC, I've only been NED for a few months fairly early on in treatment. Of course, NED is always great news but not having progression or even slowed progression can be great news, too. His tumor marker is in the "normal" range and that's great, too. Understanding and treating MBC has progressed alot since I was first diagnosed. One thing I've learned is that we each have our own unique cancer cells and predicting longevity is just impossible, until days or hours before we die, though not all the time. Is your father being treated at MSK? I'm sure you know it is one of the top cancer centers in the US. Alot of us go there for second opinion evals from a BC specialist! I've been to a number of BC and MBC conferences, even the San Antonio BC Symposium. MSK sends several of those BC oncs to the big conferences as speakers. If your father is being treated at MSK, he is almost certainly getting top notch care! Jennifer, my own mother died from metastatic lung cancer back in 1985 and that was so much harder on me than my own cancer diagnosis has been! Our parents are such important people in our lives! Hard to see them ill, especially with something as serious as these cancers! Do be sure to take care of yourself as well as him! Oh, when my MBC was first diagnosed my onc did not expect me to live ten years, so of course that became my goal, lol! She retired about five years ago, but she was still my onc when I hit the ten year mark. I hope your father will do well for many years! Know that this is a good place for info and support.
thanks so much for your feedback! My father has an oncologist at MSK who drives all treatment decisions but he lives in Florida so he has a local oncologist in FL additionally.
Hi Jennifer! I was orig diagnosed with stage 3b IDC in both breasts in 2013. After double mastectomy, radiation, chemo and a yr of Herceptin infusions I was in remission for 7 blissful years. I was not positive for he BRCA genes with no family history of bc and it is thought that it was environmental causes. Was diagnosed in Nov of 2020 with MBC with pleural effusion in left lung. Started Ibrance 125 mg and Fulvestrant shots. I became NED after 15 months and still NED after 14 months. Onc has moved my scans to every six months and will continue to stay the course until there is progression. Other than some minor side effects I am enjoying a great quality of life. I will be 65 in July and am ticking off items on my bucket list which includes skydiving with my husband! My Onc is very positive and reassuring that I could be NED for a long time. I wish the same for your dad and that he is able to enjoy a great quality of life.
I was diagnosed in 2015 Mets to all bones. I have ductal and lobular. Took anastrozole and Faslodex for 6 years and then lobular went to stomach lining. Have since been on Ibrance and Tamoxifen. Still getting good scans now after 8 years. Many of us are having good results with so many drugs out there. Don’t panic!
If you were hoping for an answer, it looks like you won't get one single pattern. There are many factors. You are getting mostly good news. I have been NEAD (no evidence of ACTIVE disease: my oncologist says once it is in your bones, you always have it; it can be inactive or active) twice, for about a year each time. Each time my cancer developed resistance to the treatment. So that is another variable -- how long you get on a treatment. Some people get many, many years without progression, some a few months. I get the average. Very disappointing -- I am not typically average!
it’s been nearly nine years since I was initially diagnosed with MBC de novo. I had surgery to remove spinal discs that the cancer had made unstable. Then, I was prescribed targeted medicine and radiation treatments to my hip bones and spine. In five months my PET scan showed NED. However, the collateral damage to my spine and hip required extensive physical therapy.
Then it spread to my lymph nodes so those were removed surgically a few years ago. My PET scan last month showed NED. Praise God! Nevertheless, my oncologist is very alert of the cancer spreading undetected because lobular breast cancer is missing the protein that forms tumors. Lobular breast cancee spreads like a thin spider web. So I must stay on top of my appointments, blood work, scans and treatments.
I hope that helps. God bless you for taking care of your father. You are a concerned and loving daughter.
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