Hi, Frederica here. I was diagnosed with TNBC in 2016 stage 2. A lump in my right breast and 1 lymph node involved. I had a lumpectomy and changed my lifestyle. I had been over 3 years with no problems. In October of 2019 I started to have pain and swelling in my right breast. I was diagnosed with lymphedema but the swelling kept getting worse and spread into my chest, neck and face. The pain was unbearable at times but they don't give pain meds for lymphedema! I finally persisted and got a CT scan. It showed my cancer had come back in my breast and metastasized into my ribs and Superior Vena Cava . In April of this year I started on Abraxane and Tecentriq. I am on my 3rd month. My numbers have gotten better, my pain is gone (of course they immediately put me on pain meds and am now on a fentanyl patch - wonderful bit of medicine), as is most of the swelling. I will get scans done the end of this month. I wish I had been more pushy on getting labs done every 6 months. My markers were so high when finally tested, I'm sure I would have caught this sooner.
I have been on the Restless Leg Community for years. Finally noticed this one! Having folks to share with is such a blessing.
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I'm also glad you found this group...I think you'll get great info and support here.
What a shame about the delayed diagnosis...and what a shock that must have been!
Let me mention that my sister has TN MBC and is doing extremely well, more than five years into it. She did some sort of chemo (I don't remember what type) and radiation when she was first diagnosed metastatic, five years after a Stage I dx. She looked into immunotherapy (sp?), which I understand is more of an option for TN, but did not qualify because of some trait of her cancer (she said "Okay, I'm 'quintuple negative", not sure what that meant) but I do think that's a good option you might want to look into down the road.
So she currently takes no treatment, hasn't for four years, except for twice having surgery to remove tumors in her lung. Not sure if this is related to her success, but she runs, slowly, about an hour a day and maintains a pescatarian diet....So, aside from a large dose of good luck, this is what she attributes her success to...
Thank you Lynn. That is amazing about your sister. I was thrilled to go 3+ years with only surgery but when it come back it came with a vengeance. I really thought I was a goner. But after my first treatment I felt so much better! I do need to get out and exercise more and your post has encouraged me to do so.
I’ll have to add tablets to my list of things to research. Never knew there were so many options out there. That’s a good thing cause we’re all so different. I wish the best for you.
I was on Tecentriq and Lynparza for 9 months. My TNBC in my skin completely cleared up and hasn’t come back. I’m on Keytruda and Xeloda now. Hope the immunotherapy works for you for a long time!
So many other treatment options that I haven’t heard of! I am thrilled I had the markers for the immunotherapy. I felt better after the first treatment! My cancer blood markers were dropping into the good zone rapidly and then started to climb a little. After some questions we figured it might be because I started taking some antioxidants after the 6th treatment (vitamin e, c, b12). Although he says the markers aren’t always a good indicator he tracks them. I have stopped taking them so we’ll see.
Have you had any side effects from the Tecentriq? I think all mine have been from the Abraxane. Except maybe a constant phlegm around my vocal cords . . .
I am not sure what will come next. I guess the scans will dictate that.
I haven’t had any side effects with immunotherapy, so it has been great for me. I did have some with Lynparza and now Xeloda, but they are manageable. I don’t have the tumor markers for immunotherapy but my Onc says I should get benefits anyway And he is a specialist in this area. Since you have them, the immunotherapy should work a long time!
I am so blessed with the outpouring of support. It has been hard going through this during the “lockdown” and not being able to use our local cancer center resources. The oncology nurses are great. I haven’t spoken with any of the other cancer patients in the infusion center yet. It’s mostly men when I go in, it seems.
God bless you, Frederica! You have joined a great community with lots of shared advice and empathy!
Just out of curiosity, you may want to ask your oncologist why you weren’t prescribed the Letrozole/Ibrance combo? That seems to be the typical treatment of choice upon diagnosis.
I hope you are well! The letrozole/ibrance combination was not offered to me. I was offered letrozole, zoladex and zometa. So I think a lot depends on various factors. I have managed well on this treatment plan so far.
I went into this really thinking I was going to die soon. I didn’t do a lot of research like I did the first time. I went to 2 different oncologists in the beginning because I didn’t like the feel of the first place. Way too “industrial”. I felt like a number. But they both recommended the same treatment. I have a brother who is a doctor and his oncology friend looked at my situation and agreed. My brother did want me to get zometa because of how much pain my ribs gave me, but when I asked my oncologist he wanted to wait. He also wants to use a newer one for bones ? If I need it.
The scans will tell I guess. Man. These scans seem to be what everything hinges on. Don’t freak about the scans . . .
It sounds like you are in very good hands, Frederica! I was diagnosed with BC in 2000 and was sure I was home free! But the creepy little bastards were apparently in hiding and resurfaced in November 2017, with mets to my spine.
I have been on Ibrance/Letrozole ever since (100 mg dosage) and started out with a monthly injection of Xgeva (aka denomusab) to stabilize and strengthen my bones. This injection was eventually reduced to quarterly and I now probably get one every six months. Apparently there is concern about taking it too often as it can also make the bones a bit more brittle.
As you are no doubt aware, all of us suffer from the "scanxiety" that comes with every PET or CT scan. I think there is little we can do to numb the fear of receiving the results. But we all move on. You will receive so much encouragement from this group; everyone will remind you that there seem to be new treatments appearing each year, providing for hope, if not for a cure, for the extension of life. I pray that all of us, including my new sister, Frederica, are blessed with many years to come!
How cool is that! You are the first person on this site that I have known to live in the state of Washington! Where do you live in Eastern Washington? I have a twin sister who lives here in Seattle like me, and a sister (one year older) who lives in Moses Lake. All three of us have been diagnosed in the past with breast cancer. I am the only one whose BC advanced to MBC. We've had the genetic testing done but, so far, there is no link to our three separate cancers.
I live in the Tri-Cities. My four children all live here and I have 5 grandchildren. It's very nice to have family in town. All my brothers (5) live in other states.
So far I am the only one with cancer. Of course, they wouldn't have breast cancer!
I'm sorry your sisters have all had this - but it is nice to have others who have been in your place to talk with.
Yes, and like you, I have two children who also live in Seattle. Neither is married yet, so no grandchildren. That is my fondest prayer now. You are blessed!
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Hi Frederica. Modern day medicines are amazing and help,so much with most pain and discomfort. I hope you scan gives you not so worrying results. We will,all be with you on here.
Oh my goodness. I love my fentanyl patch. I was a zombie before getting on it. I kept trying to take as few pain pills as possible and gut thru it (I know better now). Then when I would take one I would be asleep, drooling on the couch. So many ups and downs. Now it’s a constant relief! I even figured out how to beat the constipation that came with it. Hope that’s not tmi!
Sleep when you feel you have to no fast rules about that. Constipation is a side affect unfortunately. My doctor gave me Lactulose. It’s brilliant.Doesnt cause pain and it tastes ok for a medicine. Take care and keep in touch with us all.
Welcome. I pray you find good support and encouragement in this group. I also hope and pray this treatment will work wonders for you and your next scan will clear. I was on Tecentriq and abraxane back in October of 2019. Had my scan in January of this year and it was nothing short of a miracle- almost no active cancer. I found the combo to be very tolerable and have heard many success stories w/ it. Best of luck to you and sending you healing thoughts.
Oh, wow. That is so encouraging. It is definitely not as bad as I imagined. The hair loss and change in taste are probably the worst. I use a lot of homeopathy for other side effects but nothing fixes those
Are you on anything now? I keep hearing that this is something you manage long term. A new way of thinking for me.
I’m on to a new drug called Trodelvy, which was just recently FDA approved for triple negative. I had to move on from Tecentriq and abraxane because as much as it worked so well for me , I had to stop it due to eye issues. I wish I could still be on that combo because it was so tolerable and works for several ppl I know. My neighbor down the street also has TN MBC and Tecentriq and Abraxane has worked for her for quite awhile. Do you experience any neuropathy? If yes I recommend Natrucare cold socks that were helpful for me. Daily walks and just moving helps a lot too.
A bit of neuropathy in my face but I use homeopathy and it has gone away. But I do need to get out more and exercise. Everything seemed to go down at the same time (diagnosis, lockdown, treatment) and my workout routine bit the dust.
Welsone Frederica! This is a great group of women with helpful info. I’m 6 months into my MBC diagnosis—I’ve learned a lot here. Wishing you the best on your treatment!
Welcome Federica! You have found a wonderful site with amazing women. I hope it helps you as much as it has helped me. Couldn't have dealt with this mbc without it!.It gives me strength daily.
Keep the faith I was misdiagnosed in September 2006, and then correctly diagnosed in August 2007 with TNBC. I had 10 of 12 lymph nodes affected by cancer. My medical Oncologist said with aggressive treatment he could buy me some time. He said I wouldn't live to see 2008. I thought it's here or heaven. Well GOD decided to let my Oncologist, and any other of the medical professionals who were in agreement with the Medical Oncoligist 'prognosis that he (GOD) was in charge of birth, and physical death. The GOD I serve decided when I would be born, and when I will hopefully/prayerfully make it to the pearly gates of heaven. My angel surgeon had a different heart/mindset.Unbeknownst to me, prior to my appointment with him I didn't know he was a Christian believer, or that he was the Chief surgeon of the hospital. I woke up after one of my surgeries that he performed on me in the Post Operation room. My angel surgeon was standing at my side silently with closed eyes he was praying over me. There was an intern standing beside him. My surgeon who was the Chief Surgeon for the hospital was praying for me. He told me he would pray for every patient he operated on before, and after each surgery. He said to me staring into my eyes without blinking, do you believe you will live. I thought this seems like a trick question. For Christians we believe we will live in heaven, which is our final resting place. My first thought was here or heaven. My next thought was Ohhh my angel surgeon wanted me to agree with him. I realized this was his way of praying for, and with me. I finally said yesssssssss. The bible say's when two or more are gathered in prayer God is in the midst, and there is power in the prayer. Dr God brings/places angels in your life path. I didn't know he was a Christian or the Chief surgeon of the hospital when I saw him at my very first appointment . GOD is a healer, and a deliverer. No matter what comes your way continue to pray for, and praise GOD, especially during the challenging times. I pray our loving God will heal, and deliver you from this disease. Amen! ! Hugs from at least 6-10 feet away.
Thank you, that is encouraging. I do have a strong faith and am content to be where He has me. I have so much support. My family, both blood and spirit, have provided so much encouragement. I have meals delivered and a family takes my teenage, somewhat special needs daughter, on my chemo days. My husband is there for me - he went thru his own cancer scare in 2015 with non hodgkins lymphoma so he understands a lot and I understand what it feels like to be on the other side.
I wish could have everyone over for lunch and conversation and hugs. If there is one thing this has shown us - we need each other.
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Growth of original lump. 
Newly diagnosed MBC
PET SCAN RESULTS!
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