De Novo Stage IV
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@kbl Thank you, it's a lot of suspense. I still don't have the names of the new meds yet — they're doing more tests, to check for a mutation, and it also sounds like chemo is at least being considered. Probably chemo next. We'll see what the test results bring me, I'll know early next week.
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@doodler Really sorry you're having to go through this, doodler. I guess we all do sooner or later. I hope the new plan goes really well. Just letting you know I'm thinking about you.
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Thank you for the kind words, @tougholdcrow — it gives me a boost.
And I have a hint of where treatment might be going next — they're testing for DPYD, so maybe Xeloda? Something for me to look up… ahhh the suspense.
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@doodler I was on Xeloda for 18 months. It wasn’t too bad. I was never tested for DPYD. I didn’t even know about that test. Thankfully, I didn’t have issues. If you come back with the ESR1 mutation, I was also in Orserdu for 9.5 months. Fatigue was my main issue on both those drugs. On Xeloda I was very weepy the first month, and in Orserdu I was a bit snippy for about a month.
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@kbl That's very encouraging to hear.
Have you continued working during chemo by chance?
I'm weighing the pro's and con's and struggling with whether to go for work disability insurance and stay off work during the chemo. Maybe a "wait and see" approach to side effects would be better… I don't know. So much to think about.
I tried toughing it out through radiation and med side effects in the spring, and I regret that I didn't just take the time off entirely using sick leave. My sick leave is low now though, so a prolonged absence from work would mean taking LTD.
No easy answers I guess.
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@doodler I was officially diagnosed in May of 2019. I started Ibrance and Letrozole in June, and I did work for the first year. In March of 2020, when Covid hit, my work got super busy, as people were working from home, and I was a closed captioner for the hearing impaired. When the work increased, I had a really hard time saying no, and I just couldn’t keep up with my schedule. In May of 2020, I chose to apply for SSDI and was approved immediately. I waited six months for my first payment and two years for Medicare. I don’t regret doing it. I suffer through a lot of fatigue on these meds, and the cancer is in my stomach, bones, and bone marrow, so when it starts acting up, I have stomach issues. Also, the Enhertu also causes some issues, although I’ve only had one infusion. There has been a lot of nausea.
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Hope that everyone is doing well!
I am having problems with getting flushes in my chest port with Heparin and even saline. For some reason, it causes my BP to drop very low. But today I had to have a pre-chemo CBC and CMP. I asked that they take the blood from my hand vein. And I am okay! Hope that it continues!
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Hello De Novo gals. It's been quite some time that I've checked in. Periodically I would read this thread and root for you in silence. Last October, my dad passed away from pancreatic cancer, and still working on the estate. In PA it's a nightmare with probate, (inheritance tax, etc). Lesson learned; I will have my affairs in order, so the state doesn't obtain a hefty percent as well as the Attorney.
I was conflicted posting today but BCO is where I started my journey 5 years ago. It's been a blessing connecting with others, researching, etc. However, there is also a downside learning some members had passed. With that being said, I can't honestly say the last 5 years been an easy journey. Yes, I'm glad to be here but the losses both physically and mentally add up. Some days I don't even know who this person is when I look in the mirror. I'm still trying to redefine myself, hope someone can relate. In any rate, I just want to say thank you for being here, even though I may have been absent from this thread, there was not a day that prayers weren't lifted up for all of us.
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@denny123 I’m so glad today was successful with not lowering your blood pressure. I know you have had a lot of trouble with that for a few months.
@tinkerbell107 It’s so nice to see you back. I’m so sorry about the passing of your dad and the awful probate experience. It’s just maddening that they feel it’s okay to rip inheritance out of your hands through probate. I do relate to how hard it is to daily think about our health and what we go through. No one quite understands like others who are going through the same thing. I have threads I read but don’t post on. It’s just good to see your name every once in a while. Hugs to you.
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@kbl Thanks! Now to get through my Herceptin tomorrow while taking all of my new precautions.
@tinkerbell107 I'm so sorry about your loss and I hope that things get easier in settling his estate. I also live in PA and have no idea how to help my daughter.
Since I have been on Medicaid for several years, I don't know if they will want to be reimbursed for my bills. My daughter told me not to worry about it. She and her husband have really good jobs, and when my ex passes, she will inherit all of his property, etc. So she isn't worried about money, which is fine with me. Hopefully, she can move into my house, though.
I can't put my house into her name since I sell items online and use my house as a deduction for an office, storage, etc.
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@kbl: Thank you so much for your kind words. You are such a sweet person. I hope your daughter and grandson is doing well. I recall you moved, so hopefully you are able to see them. I'm an only child without children so my circle of support is limited. However, I try to focus on the relationships I do have but it can be a lot of work, LOL
@denny123: Thank you for your condolences. Re PA inheritance it's time consuming. I was like your daughter with my dad. In retrospect I wish we had the conversations about his Will. Per my Attorney if we did this could have saved some money, but my focus wasn't on money, just wanted my dad to not worry about it.
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I haven't posted for awhile. Just stopping by to say hi & share my most recent PET/CT scans result couple days ago : still stable on first line anastrozole & ibrance since Feb 2019. I was diagnosed de novo bone mets in Nov 2018. Lumpectomy, no chemo or radiation, went straight to Ibrance. It's not easy, but still alive & trying to get used to the new "normal" daily life. I reached my goal of seeing my son graduated from high school. He is now a college sophomore, so my new goal is to see him graduate from college. Wishing everyone lucks on whatever treatments you are on. Hugs!!
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@tinkerbell107 I just got back from a visit to my daughter and grandson for five days. We did move and are about 5.5 hours from them, but we bought another acre where we put our RV and are only 1.5 hours from her when we’re there. We are effectively becoming snowbirds. I hate Florida summers anymore and love it here. We stare out at beautiful mountains. Sending hugs. 💕
@42young That is awesome news. I hope your treatment keeps kicking but, and congratulations on seeing your son graduate, and having the new goal is perfect.
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@tinkerbell107 - it's good to 'see' you again. I'm so sorry you lost your dad, and how frustrating the probate process is.
@42young ‐ great news on your scans! Your goal to see your son graduate is great! My kids are grown and on their own. There are no weddings or babies on the horizon, so my goal setting is limited to whatever our next trip is. :)
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@seeq : Thanks for the condolence. It's nice to see another familiar name. Hope you've been doing ok.
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@tinkerbell107 I’m very sorry for your loss and that sorting out his estate has been challenging. It’s just more stress in an already stressful situation. I also wanted to let you know that I completely relate to your feelings about not knowing who you are anymore. I’m not nearly as far out as you but I have those very same thoughts on the daily. Multiple times a day. I don’t even recognize myself and not just from a physical perspective. I really miss the old me. I feel like I’m constantly struggling with how to reconcile who I am and what my life is now. I wonder if I’ll ever feel truly happy again. I can’t imagine it’s possible, but based on posts by many of the lovely folks on here, it is. I hear you and I am right there with you.
@doodler how are things going for you? Did you start new meds? I hope you’re doing ok.
@kbl have you had another infusion of Enhertu yet? I hope the side effects improve for you each round.
@denny123 I’m sorry you’re still having flushing issues with your port and that they have to take blood from your hand. Those really hurt! But glad to hear you’re doing ok.
@42young congrats on the stable scans! Thank you for sharing. It’s always nice to read good news. Keep it up!
Thinking of everyone here. Keeping you in my thoughts.
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@harrow Thanks! The IV in my hand isn't much more painful than when I get my port accessed. I will have my CT scan this Friday and will see my onc next Wed. for the results. I am sorry that you don't feel well mentally. I have been at this so long that it is my life now. Heck, I have been in treatment for almost 1/3 of my life now.
@kbl Sorry that you aren't feeling better. Hopefully your doctor can help. Did you ask your chemo nurses for something for the SE's? Mine are pretty helpful when I have problems.
@42young Yay for stable scans! Hope that it continues
@tinkerbell107 Your RV area sounds great. How nice to be closer to your daughter. I have talked to my daughter about her inheriting my house, etc. Her friend is a lawyer and I suggested that she ask about the best steps to take. But my daughter is the ultimate procrastinator and has never gotten around to do so. She is very busy with her job and my grandson's sports, so that leaves little time for anything else. She is a home-health psychology nurse and is usually up very late doing paperwork for her appointments.
@doodler I hope that you are doing well.
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@42young In 2004, my liver was so filled with mets that I statistically only had a year to live. But, here I am…. You can do this!
@kbl if you mean that you are constipated…I have been also for 10 years-first on Kadscyla and now on Xeloda. Every evening I take a dose of Miralax and 250 mg of stool softeners. It is safe.
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@kbl ugh I’m sorry to hear you’re not feeling much better. I wonder if a different anti-nausea drug might help? When I was on docetaxel, I had to change the one medication because it was causing me issues. The biggest one was it was causing my trunk muscles to spasm. Might be worth asking about? Please let us know what your MO has to say.
@doodler I hope you are able to tolerate the new meds well. I will be thinking of you.
@denny123 good luck with the CT scan! Sending massive good vibes your way! One third of your life in treatment. That’s crazy to read but so exciting for you and inspiring for us! Thank you for continuing to share your experience. It’s reading about women like you that help pull me out when I start to spiral.
I hope everyone else is doing ok!
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Hi Tinkerbell, it's good to see your posts here. losing parents is hard no matter what age we are, I hope the memories of your father helping you cope with his passing.
It's nice to see this thread active again.
KBL, I hope your body adjusts with Enhertu and that you get good results soon, happy to hear you were visiting your daughter and grandson!
42young congrats for stable and I like the way you've set up your goals.
seeq, like you my plans are within a short horizon.
harrow, good to see your posts I hope you are doing well.
denny, wishing best for your upcoming scan
doodler, wish you good luck with xeloda, some posters here got good results of this med.
I've been dealing with constant fatigue, maybe it's because insomnia is getting to me. I can only manage one activity per day. today I did laundry and some dusting and now I'm completely exhausted and can't move. my caris report came out and I need to study it more thoroughly…it's made me even more mentally drained… I have scan scheduled on Monday, hope at least it will be stable, anxious is pretty high…
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@snow-drop I’m sorry you’re dealing with such fatigue. Please be kind to yourself and rest when needed. Chores and the report will be there tomorrow. I wish you luck for your scan on Monday. I’ll be sending along all my positive thoughts!
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Thank you all.
@denny123 Yes, constipation, but I e been dealing with it for a long time. I love Miralax and have been taking it daily right now. Thats usually too much, but once I get things moving again, I can go back to every other day. I’m a bloated mess.
@snow-drop I’m sorry you’re so fatigued. It’s hard enough dealing with the cancer to have fatigue on top of it.
After talking with my family, I have made a decision about my treatment, but I need to have a visit with my doc first before I state the decision. That will be on October 3rd.
Hugs to all.
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@kbl I wish that I only needed Miralax every other day. At least it works okay for me. When it doesn't work, I have to take a dose of Philips MOM.
@snow-drop Sorry about your fatigue, which I have all of the time. How is your bloodwork? My nurses just tell me that it is because I have been on chemo for over 22 years.
I can only do stuff for about a half-hour, then am exhausted. I often nap in the afternoon. It is so upsetting that I used to be able to do yard-work all day, but now I can only do a little at a time. I am not anemic and my B12 levels are okay. Apparently exercise is supposed to help us, but my onc told me not to exercise since I break my ribs too easily. Just wrap me in bubble-wrap, please.
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@denny123 I’m adding more Miralax because I’m suffering. If I don’t go by tomorrow, my husband will run to the store for me. I really think the anti nausea is the total cause, so I’ll deal with the nausea. I can’t take that stuff.
I’m sorry about your exhaustion. I totally get it.0
