I had breast cancer diagnosed in 2007 along with unrelated lung cancer. Bilateral mastectomies, chemo and radiation then upper left lung removed. Started oral chemo on Afinitor and exemestane shortly thereafter. Have had gamma radiation times three for liver mets and currently have three new tumors in my liver. Will have a PET scan and liver biopsy then regroup with oncologist.
I am married to an amazingly supportive man and we have two daughters (28 and 25). I am a retired RN. It’s been a rough road, as many of you know, with side effects, new and strange allergies to meds, the occasional hospitalization and life style changes all mixed with being grateful for still being vertical and having family and friends who hang in there and keep the smiles coming.
I’m new to this site so am looking forward to gaining new ideas and hearing your stories…..
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Oberammergaux2
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Thank you for sharing your story and welcome. This is a great site. What is most valuable are the MBC patients who speak from their direct experience of managing their MBC. The people who are sharing their stories and how they are moving forward living their best lives, with hope, is what keeps bringing me back. Learning about their reactions to treatments, trials and the direction they with their oncologists are taking have been very helpful. I am blessed to have an outstanding care team at a top ranked cancer center who are able to provide the newest, evidence based, scientific, advanced cancer care, so I don’t come here for medical advice or research opinions. It is the inspiring stories from the other people who post. It was their inspiring stories that helped me learn I would continue living as well when I thought that wasn’t the case. Best wishes to you as you move forward.
Thank you for the welcome! I’m a little overwhelmed with all the capital letter abbreviations and the amount of knowledge that folks have concerning their cancers. My MBC is estrogen driven, hence the years on exemestane and Afinitor. Since the mets have been coming my oncologist feels another med would be more appropriate. My concern is that the side effects will be intolerable or dangerous. I’m hoping to gain some insight into different meds used with good results so I have some informed options. The injectable med really frightens me.
I've been here about 3 months and am not very familiar with many of the drugs. I take Xgeva subcutaneously. It has been fine. The annoying side effects are from Letrozole!
Diagnosed 2019 stage IIIB. Chemo- but got pelvic abscess and couldn’t finish last three rounds. Had LB mastectomy / some lymph node involvement. Radiation. Anastrazole for one year. One bone net 2021 Ibrance/Faslodex. 18 months. Unrelated lung cancer - right lobe lobectomy 2023. Progression. Orserdu for 3 months and now multiple and immense progression including liver. Heading for IV chemo - trying to get Tredolvy approved.
Constant fear, worry, panic. Know anyone in this drug?
I’m pending upcoming PET and liver biopsy….My MDs are suggesting Verzenio and Faslodex. I’ve been off Afinitor since last Nov but still on exemestane. I am probably the longest running Afinitor pt at my facility. I have hand and foot neuropathy and had ongoing mouth issues but willing to stick it out and raise dose if necessary…..I had weaned down to 2.5mg of Afinitor. Will go to Verzenio with much hesitation and anxiety but not willing to do the Faslodex, would rather stay with exemestane. I wonder if any of you have tried that combination?
I have had gamma treatments times three for mets to liver so if I go for a fourth round for these 3 new lesions I’ll definitely be wearing a Chernobyl t-shirt. I am incredibly grateful to my radiation oncologist!
Did finally end up with Horner’s Syndrome from major chest radiation in 2008
I understand that oncology is an inaccurate science at best with all the meds and individual responses. I think that adds to the anxiety and frustration of who gets what and the unknown of how you will react. Places a good deal of “what if” anxiety…..that plus scans, looking up recommended drugs, and appointments with various specialists can be overwhelming and exhausting.
I’m grateful to have been directed to this group, I am learning a great deal!
Welcome! Most of us worry about changing drugs because of potential for new side effects but I keep working on remembering that we are all different! (I had lung inflammation from Ibrance which many take for years and yet I’ve been ok on Piqray which causes a lot of side effects for others… so go figure!)
It sounds like there are still many possible targeted therapies available for you. It’s good to get a blood biopsy to check on any mutations that open other possibilities.
I will find a presentation from Dana Farber Cancer Institute where top breast oncologists discuss the latest therapies and share the link.
As you can imagine, I was a little gun-shy, but I’ve now been on Piqray for over a year and doing ok. At first I got a rash and some swelling around the eyes but Claritin cleared that up. I have pretty loose bowels but not really diarrhea. I think I’m also unusual in that my glucose didn’t go up. So overall it hadn’t been too bad.
17 years since you started this path is a great , although I’m sure there’s been ups and downs along the way.
Are you still on the Afinitor and Exemestane? Are they wanting to switch you to Fulvestrant?
I’ve just started on the Afinitor and Exemestsne and I was so scared to start after having over 4 years on my first line of treatment. I delayed the start for days and days but then nothing crazy happened, so I totally understand the fear in switching up meds. Just take your time, be prepared for the side effects but try to remember we are all different and not everyone gets side effects at all 😁😁.
my oncologist said if you have a good amount of time on the first line of treatment there’s a good chance you’ll do well on the next one 🤞
Thank you for sharing your experience. It certainly is a rough road. Like you, I was diagnosed in 2011 with estrogen + breast cancer, St II, with bilat. mastectomy and reconstruction. They also found a separate lung cancer (nodule) just prior to transplant and removed it. In 2022, I was found to have metastatic breast cancer the same type as in 2011. I'm on Ibrance and letrozole. I get labs, scans, see the team on a regular basis at a major cancer center in Boston.
What I find deflating is that a routine CT scan will pick up a benign nodule in the gallbladder which then requires an ultrasound.. which then picked up either scar tissue or a cyst with a neoplasm in the pancreas which resulted in a scheduled MRCP or MRI of the pancreas and referral to GI. Another routine scan of the chest picked up a new nodule that is either scar tissue or another malignancy. Seeing thoracic surgery for that.
Although I hike short trails regularly and feel good, I also feel like a full time patient. I'm 71 and had planned on hiking and travel to the National Parks, kayaking, biking, but now coping with this life and adjusting to new levels of normal to due health reasons is my goal. I'm thankful for the comprehensive care I receive at one of the best Institute in the country . But I also feel weary from all the labs, biopsies, doctor visits, meds, scans, infusions.
This forum helps me feel grounded and not alone. We're all going through challenging issues and trying to live our lives in a positive way. I learned it's ok to be afraid, uncertain and how to live with that uncertainty. I'm lucky to have the most supportive caregiver imaginable, my husband who is kind and loving. I work hard everyday to stay grounded and centered. I strive for feeling at peace with it all. I feel philosophical about a lot of this and try to go with the flow, it's all one can do. Welcome to this group!
I'm confused about non related lung mets when cancer has shown in the breasts? Couple of ladies have said this. I think it is related otherwise it's a coincidence. I myself had bilateral breast mastectomy diagnosed brac2. Currently on letrozole and no side effects have been on it for 1.5 years. No lymph involvement either. But always in the back of my mind I'm thinking once you have had a cancer diagnosis it will eventually show up somewhere else, and possibly years down the track. What am I missing when you say unrelated lung mets?
My “unrelated” lung cancer was a different type of cancer from the breast cancer. It was just a matter of having both types, Lung and breast, at once. I was never a smoker so the lung cancer was most likely due to years of second hand smoke exposure. I was VERY fortunate that the lung cancer showed up when they were scanning for the breast cancer.
My breast cancer was found after I had an ache under my arm from a lymph node. I had 21 lymph nodes removed when I had my mastectomies, 6 showed involvement. My lungs have remained clear.
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