How long have you been Stage IV?
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@ssales13 So glad you are being proactive! I know I felt so much better once I had a chance to discuss my new situation with my doctor and get another plan in place.
We are all praying for you and sending good vibes your way!Hugs, Pam 💗
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@livinglifenow Pam, thank you! I really appreciate the prayers. I have both called my oncologists office and left a message by text early this morning. I haven’t heard anything yet but I’m sure she’s just busy and will contact me soon.
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Pam, never heard of Signatera. I looked it up. Should I ask my doctor about this test?
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If you take xgeva, be sure to let your dentist know. I got osteonecrosis of the jaw. My dentist never saw it before but was able to diagnose it when I told her I was on xgeva. I saw oral surgeon for 8 months. He was able to pull out dead bone when gum had sufficiently grown under necrosis. I took antibiotics for two months. I’m doing fine now with just minor damage.
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2001 - divorced after 27 years and moved to Florida home built in 2000 where I worked.
ER PR +
December 2003 - mammogram. Told nothing concerning. Reviewed doctor notes after diagnosis in 2004 and there were “calcifications but nothing to suggest malignancy.” I wasn’t told this by radiologist.
July 2004 - 53 years old. 2.5 cm tumor right breast discovered on self exam. Used estrogen / progesterone patch for 1.5 years which was immediately stopped by surgeon. Lumpectomy and brachytherapy (not a picnic but shorter treatment and I needed to get back to work). 4 lymph nodes removed. Opted out of chemo even though recommended by surgeon and oncologist. Started with eximestane and Celebrex in clinical trial. Celebrex taken off market so switched to tamoxifen. Used vagifem tablets for vaginal dryness for a few years.2006 - 7 mm tumor on tail of right breast. Lumpectomy (2x because margin not clean), chemo, 8 treatments with IV without hair loss, beam radiation for a couple of weeks, twice a day with lower dose.
Followed by oncologist and CT scans every six months at major cancer center.
Mom passed away from Alzheimer’s.
2006 - moved from Florida back to Midwest. Built new home in 2007. Started new job. Switched jobs in 2008 and commuted 60 miles one way and traveled several times a year for meetings.
2010 - tamoxifen stopped by oncologist (dismissed). No medication.Dad passed away from old age at 92.
Nov 2012 - son had serious accident in NYC, hospitalized for eight months, transferred to Midwest after 1.5 months in NY, and moved home on HCBS waiver in August 2013. Lots of trips to NY and Mayo Clinic, and rehab facility. Complex and stressful time.
Dec 2014- self exam-nipple pink with erythema and tenderness. Mammogram and ultrasound. Radiologist diagnosis was sebaceous cyst. Surgeon (new) did not biopsy, and I did not see oncologist on that visit. Big mistake!
July 2015 - self exam-skin puckering and orange peel look on entire underside of breast with oozing from lumpectomy scar at bottom breast crease. Mammogram, ultrasound, biopsies (cancer), fine needle aspiration of enlarged distant lymph node (adenocarcinoma) left side, lymphadenopathy in lungs on left, mastectomy, heavy duty chemo with loss of all hair). Tumor encompassed 10 cm with skin invasion and Grade III. (That’s some cyst!) Still working in fairly stressful job. Led board retreat in another state 2 weeks after mastectomy and continued as CEO with lots of events and responsibilities and public meetings. Wore caps, wigs, and “hats with hair.”
Letrozole for 5 years max with 3-6 month CT scans (with contrast- meaning IV) and oncologist/surgeon appointments.
2016 - retired, but worked part time until 70, built accessible home with apartment for disabled son in 2020-21, got through COVID, and switched to local oncologist in 2019 at major cancer center. Continuous advocacy for son, insurance company battles, caregiver management, etc. Stuck at home because I was evening and overnight caregiver for several years until 24/7 care was authorized.
2020 - CT and MRI showed hepatic metastasis with 1 cm largest tumor and 7 mm Mets on spine. Stopped letrozole. Switched to IBRANCE, Xgeva (for bones), and monthly fulvestrant injections and blood draws. Switched to Verzenio 100 mg because of abnormal liver enzymes and eventually to 50 mg twice a day.
CT scans and oncologist visits every three months that continue to this day.
2021 - osteonecrosis of the jaw on left lower area which is side effect of Xgeva. Stopped Xgeva. Doctor consults, antibiotics for 2 months, and ended up seeing oral surgeon monthly for 8 months who eventually was able to pull out dead bone in two pieces.
2022 - I was cleaning a crab leg during a visit from my daughter at thanksgiving when my left hand was poked. Not sure if this was the cause, but very shortly thereafter I was stricken with lymphedema in my right arm after 18 years! Lymphedema is no fun. It is time consuming to treat, a chronic condition, and weakens the arm. One must wear a sleeve almost 24 hours a day and visit a PT regularly for treatment and sleeve replacements. I can still use my arm for gardening, reaching and doing crafts, but forget bowling, golfing, or lifting heavy objects. I sometimes think it is worse than cancer.
2025 - it’s been a long journey. I’ve had great support from medical team, family and friends and try to live every day in peace. Today, my son’s care is well established, although it still seems to be a moving target, especially now. I find joy in gardening, being there for those who need help, and going through the motions of my treatment, not burdening others with my situation or thinking about it very much. My oldest brother and sister in law have been particularly kind and supportive for which I am immensely grateful.
I’m so happy to be alive today after 21 years and 10 years MBC. I find myself thinking about recurrence now since I’ve been on fulvestrant and a CDK/4 inhibitor for 57 months. The hepatic tumor has shrunk (as did the lymph node and lymphadenopathy after chemo), so I’m hopeful. My lungs are damaged from surgery, cancer and radiation. I was athletic all my life, so it’s tough to get winded just walking up a slight incline from my garden. I was unable to have reconstruction because of skin involvement and it’s not fun having to wear special bras and a prosthesis which I have to maintain. And the lymphedema sleeves and continuous treatment is not fun. I hate the monthly blood draws and IVs every three months. I had an IV infiltration when contrast was given and that hurt so much I was in tears.
This summary of my experience with breast cancer is merely a summary. There are many more intricacies to this journey, and I congratulate and love everyone on this page who is battling this along side me.
I do miss my beautiful cleavage, thicker hair, and the sexuality I had before having all the estrogen sucked out of me. But, I’m alive and here to help my son who is suffering so much more than me. Thank you for reading this. I hope it sheds a bright light on the fact that MBS is survivable and definitely makes one more alive and definitely stronger.
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I can’t seem to be able to edit my post. I poked my right hand with crab leg and has lymphedema after that. I wrote left hand. Nodes removed were on right.
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@lucysgirl Thanks for sharing your story. You have been through a lot!!! It must be a relief to have your son's situation somewhat settled. I share your happiness at still being alive despite all the losses and challenges. The gift of life is still a blessing.
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@lucysgirl Wow! You have had quite the cancer journey. But, so glad that you are a long-term survivor. That gives me hope.
As to your question regarding the Signatera test… I believe it is used primarily in early stage breast cancer on high risk patients—those who are likely to have a recurrence. My doctor first suggested it after my PET showed NED after only a few treatments. And, possibly, because I wished to take a "treatment holiday" after being NED. My second Signatera showed a low positive. (See my signature for all of my tests and history). Long story short, I believe it is used primarily in patients whose imaging shows no signs of active disease, since it is looking for traces of the cancer tumor's DNA in the blood. My doctor and I agreed to do the test with each PET scan to see if it trends, which it seems to for me. (It doesn't for everyone). Once again I am NED on my PET and have a Negative Signatera test. However, if I showed active disease on every PET scan, there wouldn't be much point in the Signatera test since it is used to detect cancer "before" it's seen on imaging. Anyway, that's what I believe is the case. You may wish to ask your doctor if it is something that would be beneficial to you.
Good luck and I wish you well!
Hugs, Pam 💗
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@livinglifenow thanks for the info. I will ask my oncologist about the signatera. I still have scattered hepatic metastasis and one tumor that has shrunk to .5 cm and a small Mets of 7 mm on spine. I guess I’m not at NED yet. I get CT scans every 3 months with contrast. I had an MRI in 2020 to definitively diagnose liver metastasis. I’ve had one PET scan and bone scan several years ago. Blood work is always abnormal, although normal for me-ha! I couldn’t believe I metastasized again in 2020. The 2015 could have been avoided if I had the right diagnosis when I first noticed my breast seemed different. The treatment was brutal. It’s nice to come here periodically as most people don’t understand what it’s like to be living with MBC. Thanks, again. Love and hugs from me to you and continued good health and peace. Mary
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@ssales13 Stacy, thinking of you. Wishing you a wonderful week!
Hugs, Pam💗
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@livinglifenow Pam, thank you for thinking of me. I did hear back from the NP I see at the cancer center when I don’t see the Doctor. She said she didn’t see anything to worry about but I am waiting until next Tuesday until I see the Doctor to confirm. I’ll let you all know
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@ssales13 Stacy, that sounds like good news. I will keep good thoughts and vibes going your way. Some of these test results appear more concerning than they are, due to different radiologists reading them, etc. It's always a bit disconcerting.
Enjoy your week!
Hugs, Pam 💗
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@livinglifenow Pam, Thanks! I appreciate it❤️
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Hi everyone! Hope you all are having a good day. @livinglifenow Pam, Just wanted to update you. I saw Mo today. She said no changes for now but on October 31st I have another PET scheduled and then see her on 11/4. She said if that one showed more activity in my breast that she would either have me meet up with Radiologist or surgeon. She said Kisqali is working good on my bone lesions and that they are healing. Glad that’s out of the way. Hope you all have a good week and weekend!
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@ssales13 Stacy, thanks for the update. Glad that the Kisqali is working on your bones!! I will pray that your next PET shows improvement. My next PET is in October as well.
We do a lot of living day to day, week to week, and month to month. Hope you are feeling healthy and have good energy. I am feeling much better since I switched from Anastrozole to Exemestane. It took about 3 weeks for the Anastrozole to clear my system, I think.
Have a wonderful week and enjoy every minute!
Hugs, Pam 💗
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@livinglifenow Pam, thanks for the prayers. I appreciate it. So glad you are feeling better not taking the anastrozole anymore. Will certainly be praying for good scans for you as well.
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Hi everyone! Just dropping in a note to say hi! Living my best life as much as possible! I feel really fine and am taking advantage of it with the great summer weather. Just so happy to have the ability to get up, go - so I do!
The summer flew by (it’s almost Labor Day!?!) but I’m keeping fingers crossed for a long lovely fall, my favorite season. Perfect temperature to spend days outside, with a jacket or not 😎@livinglifenow Hi Pam, Ms. Director, how is your play coming along? I hope you are enjoying your time with it! Happy you are feeling better on the new drug.
@ssales13 Hi Stacey! Kisqali worked really well on my bone lesions too! I have too many lesions to list out but some have actually been resolved. Focus on the good stuff is one of my mottos - I seem to be creating new mottos all the time since this diagnosis 😂
I think a number of us have scans coming up in Oct. Sending out a community wide wish for great results ♥️🍀
Enjoy the end of summer everyone 🌺. Till then for now! xo juliana
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@EddieJ Juliana, so glad to hear from you! You sound like things are going very well right now! 🤗
I just had another rehearsal last night. We are really working out all the kinks. Opening night is two weeks from Friday. Lots left to do, but everything seems to fall into place just in time!
DH and I just returned from a short camping trip with friends. We had a great time!
I’m looking forward to fall as well. Let’s all pray for beautiful weather and wonderful scans!
Hugs, Pam 💗3 -
@EddieJ Juliana, glad you’re feeling really good!Enjoy it. @livinglifenow Pam, sounds like your play is really coming along well and glad you had fun camping with friends. Fall is my favorite time of year. I hope everyone has a great day.
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I had my first zometa infusion yesterday and it’s kicking my butt today! I am exhausted and achy all over. Has anyone else had this? My NP told me it should only last 24-48 hours. I’m hoping it passes very quickly.
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@alden722 Yes, this is pretty typical. Try Motrin.
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@ssales13 , @tougholdcrow , @emiliamarty , @EddieJ , @lafish , Wow! It's been a while. I imagine everyone is busy and enjoying some lovely fall weather. I thought it was time to catch up and see how everyone is doing.
I am doing well. Just a bit tired and yucky from the meds at times, but over-all—very good! The play that I directed has now ended. The cast did a fabulous job and it was a much-needed distraction that kept me very busy for months. I also made a lot of new friends. Great experience.
I am hosting Book Club at my house tomorrow night and then DH and I are heading out for an RV trip. So looking forward to a little VACAY. Hope everyone is doing fine. Would love to hear what you all are up to.
Hugs, Pam 💗
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@livinglifenow Nice to hear from you, Pam, and it's really inspiring that you directed a play. What fun. I'm an outdoorsy type, so I've been getting my steps in. The weather has been gorgeous.
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@livinglifenow Pam, yes it’s been awhile! Nice to hear from you. The weather has been beautiful here and I’ve been hanging out with family and working. Trying to keep myself busy and staying out of my head. I’ve got a PET scan coming up Oct 31st . Will know what Doctor wants to do as my tumor markers have been steady going up last 2 months and last PET scan showed some progression. I’ll keep you posted. Hope you all have a great weekend coming up.
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@ssales13 Glad you are enjoying time with family and some beautiful weather. Praying your PET has a good result. I will be getting another PET in October as well. No date set yet. Trying to enjoy each day!
Hugs, Pam 💗0 -
I'm sitting here with scanxiety, not able to open my results until I get my courage up, so all good wishes for these Oct PET scans.
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@tougholdcrow Thank you. I really understand about the scan anxiety! I hope your results are great!
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@tougholdcrow Thinking of you and sending hugs your way!
🤗🤗💗💗
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