So, because the latest break to my rib was in a brand new place where there weren't lesions before, my Onc said that it could be a new lesion, which means that the Ibrance and Letrozole isn't working anymore. This along with the loss of Barb and Nancy have caused me to rethink my plans to continue working. I'm a high school Biology teacher, and have decided to only work another 5 months. It is getting really difficult to maintain the energy needed to work full time, and I don't want to spend however much time I have left working (hopefully years!).
In the meantime, the broken rib was uncomfortable and it felt like it kept re-breaking, so I went and got 5 days of intense radiation. It helped the rib pain relatively quickly and the side effects weren't unbearable (mostly fatigue and nausea). My latest scan showed clear except for an area in my lungs that my Onc thinks is damage from the radiation. The radiation also really deformed my implant, so that's just another thing to deal with.
I'm now just waiting to see where the cancer turns up - next scan in November, and doing my best to live in the moment each day. It's all we can do, right?
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alana303
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Yes we can live our best in the moment. Oh crap, Barb passed away? Where have I been. I have no words for this, for both Barb and Nancy. I have two part time jobs. I have cut back my hours on one, may limit my hours on the other. It takes alot of work to be a teacher. I am a sub paraeducator teacher aide for special ed classes; I watch these teachers, admire them for their work with the kids, try to help support them. Take care, keep us updated.
I'm sorry to have told you about Barb - you can see some beautiful posts from Sandra about her. I'm 2 weeks in teaching and am so exhausted I can barely stand it. But, financially it makes a big difference if I can make it until Christmas. Hopefully it'll get better as I get used to it!
My daughter teaches Middle School social studies . She's 55 years old and in good health and finds the stress of teaching now so much more severe than it was even ten years ago. More crazy new rules about everything, less time to do planning, and alot more misbehavior from the students. I don't know how anyone is able to teach and treat this lousy cancer at the same time! I am an Episcopal priest and realized during the first year after diagnosis that I just could not take care of parishioners and take care of myself! The decision took awhile and was helped along greatly when I met some women with mbc who had retired. I've never regretted the decision though their are things I miss. I hope you will have peace of mind and make a decision you are happy with. Thank you about writing about your experience with radiation. I am expecting to begin rads myself soon after I see my onc next week for our first conversation about the brain mets that have just shown up.
Hi there, I know there will be things I'll miss about teaching, but I am definitely getting to a point that cancer is becoming my full time job. I'm so sorry to hear about your brain mets. In researching radiation as I was getting ready to go in, everything I saw about radiating brain mets seemed to be more positive than negative. Keep us posted on how you are doing! I'm sending you good thoughts!
Thanks, Alana! I will do the radiation, and am mostly wanting info about who's the best to do it! I am rather fond of my brain! lol Although I wish it did a better job of helping me sing on key instead of the off key voice I always seem to have! But we don't get to choose things like that, do we! I don't feel especially nervous during the day, but the last two nights I'v e had crazy dreams about hospitals, LOL.
Hi Alana, I have just finished taking Letrozole and Ibrance. It stopped working after 28 months. I started Exemestane and Everolimus two weeks ago. When I was first diagnosed and had a CT scan they found I had broken a rib on my left and two on my right side. They were painful but over time the pain subsided. This was from the Cancer. I also have it elsewhere my my worse pain was coming from my pelvis. I delayed having radiation as I was under the impression I could only have one large dose. Apparently this was wrong. I could have it in the future also. So, I went for it and haven’t looked back. It eased my pain so much. There is so much that can be done for us to help us on this journey. Wishing you a satisfying outcome. Have a good weekend. Cheryl
How does Exemestane and Everolimus compare to Ibrance and Letrozole? I suspect if my cancer has progressed, it will still be in my bones (probably my sacrum and pelvis). The radiation certainly has helped my rib - although I do still occasionally have pain. My Onc is very reassuring that even if there is progression, there are still many things to try! Thank you for your positive message!
I’m into my second week now and apart from feeling a little nauseous when I wake up it’s fine. Think it’s early days for me yet but I’m making sure Mai drink 2-3 litres of water a day which I detest. I really don’t feel any different on this combination right now and it works in the same way as Ibrance and Letrozole in so far as it cages the metastasis until finds a way out. Only way I can describe it. There is more risk of it lowering the white blood cells but I have to wait until my next blood test. Yes, there’s many options for us to try. We will have to go with it…….together. Sending best wishes. Cheryl.
I’m 57 and am on Ibrance and Faslodex. I decided to go on Social Security Disability (SSDI) which is granted immediately with a 5 month waiting period for Stage 4 MBC. This is a huge relieve and they pay out at the rate as if you retired at 67. Something to think about or being a teacher you may be able to get on STD or LTD with the school district and the. Switch over to SSDI after the 5 month waiting period is up. After 2 years on SSDI I can qualify for Medicare to boot !
As a teacher I'm on PERA, but I have already applied as a TERI case to SS - mostly to get my back date for Medicare. I will go on a leave of absence, then LTD, then PERA retirement with disability. It will only be about 50% of what I make now, so I have a lot of arrangements to make, but I think we can work it out.
I think that’s brilliant ! Dealing with this “gift” itself is a full time job trying to heal physically, emotionally and spiritually. I stepped down from an executive position. The stress was often times overwhelming and while I took a huge hit in pay, we were able to work that in. Now my biggest challenge is what to do with all this time! I’ve delved in 100% into health, diet, exercise and many amazing books on how to combat this “issue”. I’m also on Careoncology.com. That said, forMy personality, I do laundry and fold my husbands underwear military style because I need to be near, orderly and detailed oriented. ! LOL. I think God put me in this place to relax and focus on me rather than taking care of everyone else which was my job. I’ve learned I always put myself last after lifting up my employees, husband and children. In this way, it’s a blessing. Take the time to focus on you. I’m certain in your case, it’s about time as well! Blessings ! Julia. P.S. my middle name is Adele. My mom is Adele. Heart hugs !!
Happy to hear that the radiation worked and you don’t have pain anymore! When I was first diagnosed with MBC, I did cut back my hours to part time. I was on Ibrance/Faslodex. Now that I am on IV chemo, I decided to retire. No regrets what so ever! I’m blessed that my husband has a job that supports both of us and I have that option.
I'm so glad you are able to enjoy retirement! What IV chemo are you on and how does it affect you? I always like to look down the road a little to prepare. Thank you for your good thoughts!
Hi!Actually my name is Liz, lol. We had a golden retriever that we called Miss Maddie because she was such a diva!
I’m on Abraxane/Keytruda combo. Side effects that I have are diarrhea, abdominal pain, bodyaches, my hair is falling out, and I’m a little tired. The Abraxane is definitely causing my hair to fall out, I don’t think that’s from the Keytruda. The diarrhea and abdominal pain can be from both as well with the bodyaches and being tired. Wishing you the best!
Yes, I agree with you to live in the moment is the best advise. As I gain strength I get more active. I started a small girl get together for lunch, take a knitting class, attend a gardening class and Elks Bingo as my best friend likes to play.
There for a while I was like a vegetable. I broke my left arm and fractured my femur so my surgeon put in rods and screws and I didn't have to wear a cast. But it took me 7 months to walk again and 10 months to use my arm. The therapists focused on my leg and forgot that my arm was broken so working on it was neglected.
I have Pet Scans so the doctor can do comparatives that's how they can tell if my breast/bone cancer has not grown in strategic places. I had radiation treatments and that seems to have held the growths at bay for my last to visits with reports from the radiologist doctor. I don't like to take Pet Scans, as that is 37 (give or take) x-rays at one time. I'm trying to get out of them in hopes that the last 2 Pet Scans did not growths have shown. However, I noticed my tail bone has grown and I now sit on memory foam pillows.
I've been on Ibrance, Faslodex and vitamin B-12 shot for 2 years. I almost feel like my normal self. Excluding the tumor leaking under my arm and the lightening striking pain where my rods are located from time to time.
I don't know if any of what I wrote is helpful. Thank you for your writing and you are making the most of it in every moment. My best to you, -GH
Thank you for your message, GH! I'm glad to hear you are feeling like your normal self. After 26 months on Ibrance/Letrozole, I feel awfully run down, but am thankful to have been given more time!
Hi alana303.I agree with you about having lost both Barb and Nancy and also our MindySooty a few months back. Their loss has to teach us something about the time we have left.
It's so good to hear you will give up work. You need to have time to be who you are. Not what your work dictates. I really don't know how some of you have worked througout this time. I get so so so tired. I could not have held to a job.
Three and a bit years ago when I found out that I had metastatic breast cancer, I had a mortgage I was running my own hairdressing business in a country town in Victoria Australia, which meant I had to drive an hour and a half both ways back and forwards from Melbourne to Ballarat to do my work. There's some very good cancer hospitals here is in Melbourne. So my daughter helped me to get onto a pension straight away. I sold my house. I moved to Melbourne where I lost my partner to his death. (he had non-Hodgkin’s lymphoma cancer).
I am so glad I have not worked a day since my diagnosis.
Don’t get me wrong. I have had financial problems and I still do. But none of that takes away from the fact that I’ve had choices every single day of my life since my diagnosis.
And for that... I will die happy.
I worked so hard my whole life. I'm also a musician/composer. So basically I worked to support my hobby/creativity.
Recently I've fallen in love with watercolour painting. Addicted.
I really feel the only thing we owe ourselves is our happiness and contentment.
You go find all the things you can that makes you happy.
Hello! Yes, I am looking forward to just having myself and my sweet dogs to worry about. I am more than ready. I hope to make it until December for financial reasons, and suspect when I'm done I won't look back.
Your life and passions sound amazing! During quarantine, I rediscovered jigsaw puzzles. Lots of life parallels in doing a puzzle, and it's just a soothing and satisfying pastime. I also will spend much more time in the mountains - I live in Colorado in the U.S., and haven't been able to find the energy to get into the remote areas that I love, but plan on doing it much more when I have more time and hopefully more energy.
I love what you say about the only thing we owe ourselves is happiness and contentment. I completely agree!
That's great Alana. Oh how I'd have loved to get to Colorado. I have a friend from Australia who moved there. She's a pianist. And she loves her life there. You will make it! You will do lots more hiking and crosswords.
You're absolutely right about our mindset! Instead of waiting for the other shoe to drop, I am glad that I've got 3 more months on Ibrance/Letrozole. I'm only 2 weeks into work and had to take some sick days due to a high fever and coughing - I'm vaccinated for COVID, but of course am still wary of the Delta variant. I'm waiting for a COVID test result now. Very few students in my high school wear masks, and even when I do, I'm sure the viral load is so high in my classroom of 30 students that it doesn't matter. It just is more evidence supporting retirement. Frankly, I'm ready and will be relieved when it's done!
Thank you for all of your informative posts and for being a voice of encouragement!
Are both Barb and Nancy gone! I did not realize this but was very aware of their absence and fearful of their passing. I read so many posts from them and this is upsetting.
Thanks for the links. I watched Nancy's slideshow and cried. I remember her writing about her trips to Ireland and I was always encouraged that she had gone over 5 years with this disease and was still well. And then she was not well. I miss her posts. I did not realize that Barb was a dentist. I am into my 4th year now with MBC and overall I am positive, but I am also very aware that eventually I will succumb to this disease like Nan cy and Barb did. Meanwhile I give thanks for every day.
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Bone scan total body
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Sternum metastases.
Does anyone know about SSDI and is there additional benefits for children under 18?
