Diagnosed in Dec. 2013, surgery March 2014. 16 rounds of chemo, 4 of which were the red devil, 34 radiation treatment's. Finished up the week before Thanksgiving. Saw my oncologist & radiologist as recommended. Every pain, weird feeling I had I contacted my oncologist (per his request). Around March 2017 started to have issues with back pain & I didn't see my oncologist until Aug. We had purchased a new mattress & we thought it was from that. Finally got into see the doctor & his whole expression changed when I told him about the pain. Immediately I was scheduled for the scans. Thats when he found the breast cancer had metastasized into the bone in the spine. All my vital organs were fine, head scan (I also get dizzy) was clean. He stopped my femarra, since it proved that didn't work for me. Sept. I was put on Ibrance 125mg. with the monthly Xgeva & Faslodex injections. I just had my first scan after being on the Ibrance for 4 cycles & it showed the cancer is "controlled" not in remission, but controlled. Not sure what that means but will get more info when I see my Onc. next week. Not sure how long it takes for this medication to "kick-in" not sure what the outcome will be. I was told this will be a long journey & I most likely will end up "somewhere down the road" on chemo. I feel good, except for the thinning hair & feeling tired all the time, no other complaints. In fact the arthritis I have in my hands feel's good from the shots for the bones I get. Is this the miracle drug? Will I live to see my granddaughter (1-yr old) grow up? Will I get to enjoy life with my husband, who has extended working passed retirement age to keep the good insurance? I stay positive, but seriously I'm pretty numb inside like it hasn't hit me yet!
3 years of bliss: Diagnosed in Dec... - SHARE Metastatic ...
3 years of bliss
I’m tolerating IBRANCE very well. Stage one, without any lymph node involvement metastasized to my lungs in 4.8 years. No explanation, they say it should never have happened. I have lots of hope and believe I will see my three month old grandson grow up. This will be a chronic disease. I wish you all the best. Be positive there are so many advances for MBC.
Your story sounds like mine. I was in remission fir 11 years so when I had an uncontrollable cough, I even asked if it could be cancer returning. 3 doctors said. No, including my oncologist. By the time I gad a lung biopsy, 8 months had gone by. It was in both lungs and in the plura of both lungs. After a year of chemo (no radiation or surgery available since it was so covered up in tumors) I am now stable. I’m on Ibrance and Femara since Nov 2017.
I am on 13 cycles of Ibrance and Letrozole. Xgeva shots every month just changed to every other. Everything is holding its own. No progression. Give your treatments some time to work. Ibrance is supposed to be the new miracle drug which keeps us around. Like it ha been said, it becomes a chronic disease. Prayers, love and big hugs!
I am so sorry that you have joined this club.
I was dx may 2014, 3B. Did the red devil and tactere followed by mastectomy where 13 nodes tested positive. Spent 6 months in wound care before doing the 36 radiation treatments. Finished all that in May 2015. Started tamoxifen after surgery. Felt really good for while. Broke a rib in the spring , did a biopsy and found out it’s back. Then back pain began to worsen and so it’s in the spine and pelvis.
Started ibrance and femara. Now I’m doing 10 radiation treatments before gettting back on ibrance. Going to talk to the onc about restaging today.
No telling what’s to come but I’m going to make as many good memories with my 5 kids and 7 grandkids as I can.
I don’t know about others but I go back and forth from pessimism to optimism and back again. Very frustrating. Best wishes to you.
After being free of this disease for 3 years, it came back. Started with back pain in Mar. 2017, had my first scan in Aug & thats when they found it. You have to stay positive that is the key here. I have been on Ibrance since Sept. going on my 5th cycle. My last full body scan showed that the cancer in the bones in my spine are controlled. No growth! This medication seems to be some kind of merciless medication. We all have our down day's it's normal but don't let it take over your life! You have grandkids to spoil, as do I! Good luck & I'm here if you need to talk.
I think the uncertainty is difficult for all of us. For me living with this serious disease and the anxiety around scans and about the future is worse than any physical discomfort. It isn’t helpful when people tell me “well you could get hit by a bus...”. I know no one knows the future but this bus is constantly right behind us. My oncologist would like me to look at this as a chronic illness but given the stats and facts, I have a hard time embracing that. I do best when I live in the moment, makes plans for the future (travel, kitchen redo etc) and enjoy my pretty good health at present. Some people find strength in becoming an advocate for mbc. I’m not quite there. Meditation, yoga and just living my life being fully present works best for me. And it’s a constant work in progress. I think we all have hours or days when we are sad and afraid. The thing is to fill our lives with people and interests that fulfill us and asking for help when it gets too much.
You are absolutely right! The hardest for me is asking for help, my husband is so good at caring & taking care of me but sometimes I feel like I'm being suffocated. I feel great have had no bad day's except for the flu. I love that he is so caring but do need a bit of space sometime's just to re-energize myself. I know they say this is a chronic illness, but not all chronic illnesses end in death. Right now, I'm totally positive the cancer is being controlled & I'm living my life. Unless your actually going through this, people do not know how to react. Stay positive, think happy thought's! Right, like I have a cold! You can't help but think of the future.
This is a great space for us to share with others who are walking our walk. Petreep I had a surgeon who was highly skilled and very caring but I felt once I became Stage IV I got less precise treatment after we realized I had metastatic disease. I had the cancer removed from my breast, a modified lumpectomy, but he didn’t get a totally clean border. I think he would have in another pt. I will never say this cancer is a gift. It has turned my life upside down, terrorized me, probably cut my life short and put me on this medical treadmill. It has also forced me to think about everything. I hope I am a nicer more patient person. I try to cherish every good thing as small as a great cup of coffee, a beautiful sky, my opportunities to travel with my darling husband. I took so much for granted before. I thought I was a good person but I hope I am a much better person for having passed through this fire. But this is my life and I don’t want everyday to be sad and depressing. I want to live it fully. Takes so much energy! I do take an antidepressant and see a therapist because I don’t want to overwhelmed loved ones with my angst. All we can do is our best. And again ask for help when you are sad and stuck. 🙏
What a beautiful perspective; thanks for sharing. You described me to a T. I was diagnosed in mid-November with MBC that had spread to spine; was 17 years since a Stage 1 diagnosis in 2000. The first week was the worst because the news itself does indeed turn your world upside down. I lost so much of my enthusiasm for life, but once I began treatment (so far 10 rounds of radiation to spine, letrazole, Ibrance, and Xgeva) I am holding my own despite some lethargy and other side effects. I also have been on an anti-depressant since first diagnosis in 2000; believe it saved my life!! God bless you!!
I do agree with you. I hear far too often you could die of a heart attack tomorrow or an accident. I also get tired of doctors not caring as much because we have stage iv. Hope you’re surviving this brutal winter. That’s what is doing me in right now. It’s hard to stay positive when you’re stuck indoors.
I so agree! Everyone is not meant to be an advocate.
Hello, those are all the questions we ask. I was dia Feb 2017 (6 liver tumors, and 2 in my spine) 4 rounds of red devil and currently on my 10th cycle of Ibrance/letrizole. I have been NED since Aug. I get PET scans every 3 months, those 4 days are the toughest I face each year. I have learned to live each day to the fullest and enjoy all the time the good Lord gives me.
Over the past year I have done a lot thinking, praying and crying. What I've realized is take everyday as a gift.
God bless you, Lisa!
For some of us unfortunately we’re in this for the long haul, hopefully. I too, hope to see my granddaughters grow up. Some days it’s easier than others. Stay strong and positive.
I’ve gad the same questions but I remind myself that we live one day at a time and in God’s timing. I can tell you’re a fighter and you are going to do well.
Hi Darlene!
I was dx mets in 2013 to T9 of spine (also a dot on the iliac and a walnut size in my lung). I started getting xgeva shots and within months the T9 lesion was dormant and calcified. You are on really good meds and im positive you will see your granddaughter grow up! My grandson was a toddler when i was dx and now he is a big boy and i have seen a granddaughter born who is now almost 3 and just last week got another grandson! Im hearing positive reports on our meds. I take Kisqali/letrozole now. Ibrance was too hard on me. And i get xgeva every 3 months.
MissyAnn,
I'm so happy for you, all those grandkids sounds wonderful! I'd love to see my little one grow up! This does seem to be the miracle medication. I have heard no horror stories from anyone. My oncologist is very reassuring & keeps me positive. It help's to have a husband that understands & a daughter that is always available when I need to chat she's an RN, works in a hospital on the oncology / telemetry floor. I'm so happy everything is going great for you, this gives me reason to believe in a future. Congratulations on your 3rd grandchild, another little one to spoil!
We have actually really been hit by the bus already...we are trying to get back up!
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