My daughter was diagnosed stage-3, January 2018. She had dense breast, reason given for no early detection. She was going to MSK and told she was clear after one breast removed and many lymphs nodes, all cancerous. She also had chemotherapy first , (no shrinkage) followed by radiation. Returned to work on anastrozole and fulvestrant, until May 2019 when she developed chronic cough, Than another pet scan done showing it spread many vitals including eyes, brain. MSK did not rush to change anything, and she went to Penn Med. They changed to Piqray and Fulvestrant and treated eyes + brain with whole head radiation. However progression below head continues. Piqray and Fulvestrant were stopped and started gemcitabine several weeks back and was hospitalized, severe stomach pain and swelling. We are seeing a doctor at Mount Sinai on Tuesday who is suppose to be top notch. However his email indicated, Carol's Guardiant 360 test shows hard cancers to control. It is a mutation GATA3-. On the test itself they show no drug to take for it. . Her oncologist mentioned the hospice word to us while she was hospitalized. We have now been home a week and she has been pretty good until we started Gemzar, chemotherapy a week ago.. She is ER+ HER2 negative Pr negative I would be very grateful for any information anyone has to share. After her oncologist visit yesterday, she had hospice show up today. I am devastated they have nothing to save her. He only mentioned one other chemo. But said the side effects may shorten her sevivarval to a few weeks. He feels she has a month or two. He has stopped all cancer medicines. She never fully recovered since the whole head brain radiation. He blood test cancer markers are five digits.
Nothing working on My Daughters MBC - SHARE Metastatic ...
Nothing working on My Daughters MBC
- Blood tests
- Cancer and tumours
- Chemotherapy
- Gemcitabine
- Gemzar
- Breast cancer metastatic
- Anastrozole
- Fulvestrant
Dear Fred,
My gosh, this is so awful and and almost unimaginable. I truly don't know what to say/write, Except that my heart really does go out to you, your daughter, your family/loved ones.
The one maybe rational thought I have is that, is it possible that her cancer is actually Triple Negative and so the treatments / chemos re: hormone receptive aren't working? Maybe the sample that they took was hormone responsive but then the disease morphed, as it often does? Have they taken any other or more recent samples? There are new immunotherapy treatments available only for triple negative people...Can they biopsy something more recent?
You've gone to some great, top-tier cancer centers, so I would be hard pressed to second guess, but I'd also advise you to go ahead and do that.
Fred, I'll also mention.. reluctantly...that most or all of us on this site/group, who all have metastatic disease, have or will hopefully gradually come to terms, and accept things, as difficult as this is. Is it possible that your daughter has? I truly hate to write this. I'm a mom. Who is dying. And I'm crying for you. But is it possible that she has a different perspective on things, her situation/outlook ? I obviously have no idea. I just know that in my vision of how things go for me, at some point I and the people who love me accept it. I know it's more difficult for them than it is for me. And while it's beyond tragic, it's also peaceful? I think there's a balance, although I have no idea how I would achieve that balance if I were alive to see my daughter dealing with this...
My words might be clumsy, or wrong, but in a nutshell, I'm so, so sorry for what you're going through. We on this site tend to be older women...I think we all are shocked and so sad when younger women join, who are in our situation...but to have the Dad of a younger woman affected by this awful disease is a new dimension of pain for us all, I'm sure. I most sincerely wish you all the best...My thoughts, my heart are with you.
Lynn
Thank You so much for your thoughtful reply. Unfortunately her doctors have to fight with her insurance company (Cigna) every step of the way. Her doctors wanted her on Keytruda and despite a peer to peer review, Cigna said she doesn't meet the triple negative requirements and there are no suitable trials for her.
We left our home ( May 2019), one hundred and sixty miles away in Pa to help her keep her home in NJ. Her husband needs to work and our daughter was fired from her job of sixteen years on December 01, 2019. She has a four year old daughter, and cannot take care of her, without help. We converted the living room into a hospital room, and my wife is her caretaker. I do believe our daughter understands the situation, better than us. She does not want to do any more radiation treatments, or harsh chemotherapy . She is having enough trouble swallowing her pain meds. We ! in a million years, never dreamed of such hard times. Our daughter was always on a healthy diet, never smoked and an occasional glass of wine. They did say her cancer was caused by the environment. Don"t know how to get past this ? I do know, all on this site, have suffered so, for themselves or a loved one.
Dear Fred,
I am so sorry to read about the difficulties your daughter and your family are going through. My heart truly breaks especially for her young daughter. I am ER+, HER2 -, and was first diagnosed with stage 2 on Oct 2017 (about 3 months prior to your daughter's first diagnosis) and Metastatic about one year later on Dec 2018. I too am going to Mt. Sinai specifically the Dubin Breast Center.
I don't have any advise or can share any new treatments and such. I just wanted to reach out to you and tell you that you and your wife are wonderful parents to support her as much as you have. If your daughter is in Mt. Sinai and you'd like someone to visit her, please reach out to me and I will do my very best to visit her. I work in midtown NY and don't have any medical training but as a mother with stage 4 bone mets and two kids of my own, I can provide her with as much support as a I can.
I recently found out from this site that Stage 4 cancer patients are automatically entitled to SSDI (Social Security Disability Insurance). They are also fast tracked for approval. Unlike SSI (Supplemental Security Income) SSDI does not care how much income you are earning or have in the bank because basically it's the social security payment you would have gotten at retirement age. The payment may come in handy for your daughter and her family to help out with expenses. Many hospitals (such as Mt. Sinai's Dubin Breast Center ) have patient advocates and social services that can probably help you if needed. Here's links to some info on SSDI:
- cancer.org/treatment/findin...
Lastly, I am curious why her doctor would say the cancer was caused by the environment. I haven't seen anyone state that on any of the posts I've read so far. Could you share a little more info?
All the best.
Fred,
Jonesburger said it beautifully and I'm sure she speaks for many of us whose hearts go out to your family...I'll add one more potential resource if obtaining the Keytruda is a priority for you: The Patient Advocate Foundation.
patientadvocate.org/connect...
It looks like their Breast Cancer fund is depleted but I understand - but am not certain - that they can help with the appeals process for insurance coverage. Free of charge....they're a non-profit.
There's lots of other information/advice online regarding how to best overcome an insurance denial, but it can be challenging/time consuming to sort through it all and it seems that time is of the essence. Perhaps a friend can take this on for you? If there's anything we on the site can do to help, please let us know....truly.
My best to you and your wonderful family,
Lynn
Jonesburger, thank you for sharing everything, very much appreciated. Our daughter had several genome BRCA1 and BRCA2 mutations test for any cancers that are hereditary. After these test ruled out hereditary cancer, oncologist deemed it environmental. Cancer rate has increased over the last decade, due to new types of compounds and plastics. I guess it's like smoking. Takes many years to figure out, there bad for your health. Ever since we were told environmental ! I wonder if it was a paint I used or a toy, or a million other things. Thru gene testing, they can identify what your risk are, for future health issues. If they could only figure out how to repair any defective genes ! Thank goodness health insurance companies cannot use pre existing conditions against you, like life insurance companies do.
Yes she is receiving SS for her and her daughter. Using most of the SS money to pay for COBRA health insurance, at $2,000.00 a month. Medicare does not start until 24 months.
You are an angel with your offer to visit her in the hospital. We were at Mt. Sinai's Dubin Breast center on Tuesday for a visit with Dr. Shapiro.
I only wish a hospital could help her, but not at this time. She has not had any treatment that made her disease stable. We will continue to pray for a miracle.
God Bless You
Just got a letter today that her doctor applied again for Keytruda. It was written several days( Feb 4th) before she seen doctor and decided on hospice. It is given by injection, once every three weeks. She has a port so that part is not an issue. She now wants to call doctor tomorrow and tell him, she wants to try it. The drug crosses the blood-brain barrier, and that is something she really needs. She was also at Wills Eye Hospital last week for the third time since her whole head and eyes, seven-day radiation treatments. Wills Eye hospital said the cancer in her eyes , has become active again. Doing another round of whole head radiation would end, any quality of life that remains. My wife just got off the phone with doctors answering service and he will contact her tomorrow. I know Keytruda may not work at all for her, but she wants to try it. Her daughter will be five on March 26th. I am hoping her tiredness is still from the Gemzar she had eight days ago followed, Granix shot to help her immune system fight off germs. However shortly after these two treatments she became fatigued, and only slightly improved. Anyone on Keytruda, I would love to hear from you. Any and all comments are appreciated.
Fred, that's great news - I'm so glad the doc went to bat for her and was successful!
If you type Keytruda into the search bar, upper right, you'll see posts/responses from several folks with experience. You might find some helpful info there plus you can pose questions within those posts....
Also, you might get more info if you post a question re: Keytruda to the entire community. I haven't been able to figure out why certain things show up in my "feed", but the word Keytruda in the title might help get it to relevant members.
Best of luck with the new treatment...We're rooting for you all!
Take care,
Lynn
Fred -
I just re-did the "Keytruda" search in the search bar and noticed that most of the resulting posts were from folks with other types of cancer. The info still might be relevant, but if you want to limit results to those from Breast Cancer patients, you can choose in include posts from "My Communities" on the right, as opposed to "All Communities".
Thank you Lynn, just to clarify ! In the letter Ketruda was not approved or denied. Cigna requested more information, before making decision. I like the fact, it is given once, every three weeks. Without a doubt we need a miracle, just to give her more time. Thank You for all the information and God Bless.
Thanks for clarifying...It does sound like progress and I'll be hoping for a good outcome....and a miracle. Be well, Lynn
I can’t add anything to what Lynn and Jonesburger have said about treatments. I feel really bad that you are having to deal with this. Parents are supposed to die before their children, it’s what is normal, but unfortunately the world does not always work that way.
Hospice should help your daughter be more comfortable and may be able to help with the question of why she is so tired. When a person is put on hospice, that doesn’t always mean that they are going to die immediately. Many people go on and off of it as needed. But I’m sure at this point, being told that there is no further treatment and hospice is the answer was a real shock. I’m glad your daughter wants to fight on, but be sure to tell her it’s okay to quit when she feels that she is ready. Sometimes people need permission to be peaceful about leaving this world when there is no more to be done. It is probably one of the hardest things a survivor can do. I am holding you in my thoughts and prayers.
Elaine
Fred - as others have said, I am so sorry for this heartbreaking news. You have done a magnificent job supporting your daughter.
You ask for us to share any thoughts that might help during this difficult time. I offer my thoughts with great respect and understand that others have a different perspective. Like Lynn said, many of us have already thought about what we want when the time comes. For me, I've seen enough after two previous bc diagnoses, and watching my mother die a difficult death from bladder cancer. So, I have made it clear to my husband and daughter that when the end is near and medicine does more harm than good, I am prepared to let go and only have hospice care.
I saw the enormous difference between the failings of hospital care for my mother and the gentle, graceful hospice care for my father. It was night and day. Hospitals are confusing, sterile and not set up properly for end of life as well as hospice care in my opinion. Just last year, I saw the huge helpful difference the switch to hospice care made for my father in law before he died from a progressive neurological disease. It was amazing to see how much more peaceful my wonderful father in law appeared when all the tubes, etc were not hurting him. He looked less agitated and was restful. Yes, it was hard letting him go, but nothing like I saw with my mother and others.
These experiences reinforced my belief that there is a season for everything, including a time to let go. I have only good things to say about end of life hospice and hope you can find the right care for your beloved daughter.
Einstein said you can destroy matter but not energy. Love lives on even after we are not here. God bless you.
Marthasvinyard...Thank you so much for your wise and eloquent words. Lynn
Merck Pharmaceuticals has a program to provide Keytruda when it is not standard of care for MBC patients. The patient completes an application which can be found online and the doctor does, too. If she meets income requirements (under $84,400 for a family of 2), even with insurance, she can get it for free. It takes about 3 weeks for approval. Take a look at Merck’s webpage for Keytruda to see if you see the info. Can’t recall the exact location. I am starting in a week in combo with Xeloda. I was on Tecentriq, a similar immunotherapy, in a trial for 9 months and had no side effects.
Omg! My heart and prayers go out to both of you! Another opinion may be warrented and alternative treatment may need to be considered.
I will be praying for her. That is devastating.
If Keytruda may work, find a patient advocate to help you! That is their job! I am crying for you and your family. My heart goes out to you. I wish I could do more.
You will be in my prayers.
Oh, Fred, as a mother and grandmother, my heart aches for you and your family! Know that you are an exceptional man to be here looking for help for your beloved daughter! I find myself relating to your family in so many ways and when you mentioned 3/26 as your granddaughter's birthday, you really had me, as that is my birthday, too. Do you happen to know if your daughter's cancer cells are ductal or lobular? Lobular bc is less common than ductal and goes to uncommon places, like eyes, and various tissue lining other organs. Unfortunately, younger women do tend to have more aggressive cancer than those of us who are older. So unfair and so damaging to families! Your daughter and her husband and little girl are fortunate to have your and your wife there to support and help them during this challenging time. You mentioned hospice. I have read and heard several times that hospice care oftens ends up extending the lives of cancer patients. My mother died from lung cancer that had metastasized to bone and brain. My brother and I were with her during the final hours of her life and as she died. She had excellent hospice care and her death was peaceful and comfortable for her. Fred, I'm a retired Episcopal priest and have been with alot of people as they died, and have seen cancer deaths that were peaceful, gentle and not scary. Harder on the family than on the cancer patient. End of life care has become exceptional care. Most hospitals, cancer centers and hospice programs have chaplains who are generally trained to assist people of all faiths and no faith at all. And those that have been around for several years are often great sources of information about local resources. So are social workers, and often oncology nurses. Come here as often as you want to, whether it is for information, support, to vent, and let your family know that there are many of us here who will be praying for all of you and hoping for the best. May you all be surrounded by love and support.....
Fred my heart goes out to you and your family. Shame on your daughter’s company letting her down like that and adding to the stress of it all. Try contacting Cancercare (NYC) - they have advocates and are a wealth of other resources for assistance. I think they will probably have knowledge of what’s available in NJ. What town is she in?
There are charities out there that can help with heating bills, car payments, child care, all sorts of things - simple to apply and will take the pressure off a bit even to get a bill here and there paid. It won’t help your daughter of course but will help take the pressure off the rest of you.
Do you have assistance of how to share this news with your granddaughter? Even at this point, There are some great cancer -related books out there. I have one which is amazing. It helps with explanations through every stage of illness , and following.
“How to tell a child their parent has cancer”
I’m not being eloquent here sorry but I feel your pain. Hugs
I'm so very sorry for your news. It seems she and you have been through so much.
Please contact the Cancer Treatment Center of America.
They have given my hope and are saving my life.
Love and Luck,
Praying you receive positive news this week. And for extra strength during this very difficult time. My heart goes out to you, your daughter and family, praying for a miracle...that something will work. 🙏❤️
Petscan showed progression. Moving from Ibrance to Piqray. Terrified. 
My aunt's de novo stage 4 breast cancer
Mom’s MBC Diagnosis - Intro & Questions 
