De Novo Stage IV
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Happy holidays everyone 🎄 love& hug
Tinkerbell (((hugs)))
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Tinkerbell, thank you for your beautiful words. It’s so true. I don’t know where I would be without the support of all the women here. Hugs to all. I hope everyone has a Merry Christmas. If you don’t celebrate Christmas, I hope you do something fun. We are having beautiful weather.
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To my fellow forget-me-nots:
I just wanted to add that I am surrounded by numerous scratch pads, sticky notes, spiral notebooks, and pens. Every time I think of something, I write it down because it will be gone if I rely on my memory. This especially works at night when I have an idea before I sleep. I used to get nervous hoping not to forget, so writing it down takes a load off my mind. The notes are in a clutter before me on my coffee table and I go through them often during the day.
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Anna, I installed the Alexa app on my phone, and now if I need to remember something, I tell her to remind me. Lol. Kind of creepy, but at least it works
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Thank you so much for replyiing. I have a hard time sharing and telling my story, so I do appreciate your kindness and support. Thankfully, I am having an excellent response to treatment, and feeling much better than I did at the start of it all. I do have mostly gastrointestinal issues, some nausea here and there, but for the most part, my side effects have been as extreme as I know they can be. It's more the emotional toll and the fear that I am having a hard time with.
As far as contacting my GYN, I have gone over it a thousand times in my head. I have even written him a letter, which I have not sent yet. How could he have missed this? I just cannot understand and I will always wonder if I could have caught it at an earlier stage, had he taken it seriously and sent me for a mammogram. I also have my own personal guilt for ignoring the tumor that I knew was growing. Why did I do that? How could I do that to my children?
As you can see, I am in a battle with myself. I know I need to see a counselor, I need help coping and coming to terms with all of it.
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It is a long hard road we are on, and the emotional toll it is taking on me seems to be the worst of it at this point in time. Thank you so much for your kind words, it is so very helpful to hear from others going through it. I hope someday I can offer advice to someone, or just make their day a little brighter.
I am what they call triple positive. A very aggressive form, but the good news ( if we call it that ) triple positives have many many treatment options. Right now, I get my last taxol on January 14, then I go on just H and P every 3 weeks, Aredia once a month, and my hormone blocker once a month. I am scared to stop chemo, I am terrified of progression.
I am thankful to have found this group, it is helps me a great dea.
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Tiffany,
When I was coming off chemo very recently, I was terrified too. As I started to feel better without the chemo side effects, I found that my fear lessened a little. I hope it does for you too.
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Tiffany,
I know we’ve all said this ad infinitum but it does get easier. Having a plan I place has, hopefully, helped you. I was curious about the Aredia you’ll be getting. This is an older bisphosphonate that is not used much anymore. I used it for almost three years but that was seven years ago. I honestly can’t say why it’s declined in use as I had stopped using it by the time other drugs replaced it. Xgeva is one of the more current drugs. You might want to ask why Aredia was chosen over the newer drugs. Take care.
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Tiffany214, I’m so glad you found this group and have comfort in knowing you are not alone. I’m so sorry for the fear you feel. I am sending hugs your way and hoping the fear subsides some so that you can have good days.
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Tiffany214: Thanks for updating us on how you are doing. It's a lot to absorb having MBC but you'll find your path with treatment, appointments, etc. It's all mentally exhausting.
As a follow up to the cognitive decline discussion, a new problem to deal with is accidental self-injurious behavior. As I was going down the cellar to open up a storage container (where I keep my Xmas lights), I had difficulty opening up the lid. After several tries trying to open the lid, On the last attempt the lid came off and smacked me in the bridge of my nose. OH, my STARS... I have ice on and off for the last few hours. So far, no blood and will take time to bruise. Hopefully I didn't break my nose.
I'm trying to recall life before MBC. Was I this accident prone? Has anyone else noticed being clumsy or having bouts of self-injurious behavior? I keep thinking it has to be the medications and preoccupation with MBC.
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I have pain in my hands and sometimes inability to grasp things, like I think I have hold on something but it slips out of my hand - I believe it is due to the AIs.
what your describing sounds like something similar, like maybe you didn’t have a tight hold on the lid but you thought you did! That’s what it is like for me. Just something I live with thanks to anastrozole
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If it is the AIs, I don't know what my excuse is, lol. My hands get really stiff now and weak. I have a hard time grasping things to open them also, even things that were so simple before. I theorized that it was the zometa but I haven't found this as a published side effect of anything in taking.
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I also can’t open things, but my mom had the same problem and didn’t have cancer. My hands are much more weak, but I keep trying or call my husband if I just can’t get it
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Olma, Kris and KBL: Thanks for the reassurance. When I was diagnosed with MBC, the MO has me on the same 4 medications. It's hard to weed out what causes what side effects. If it's the AL (letrozole), then Like Olma said it's something I will live with for not ready to try another AL. Nevertheless, I need to be more careful.
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As far as the Aredia, my mother has discussed this with my oncologist as well. She wanted to know why he chose Aredia over Xgeva, and he said it was due to side effects being more severe, and that I was doing very well on the Aredia. My mother is not satisfied with his answer and plans on bringing this to the attention of my oncologist at Moffit Cancer next week. My mom researches absolutely everything and is in constant debate with my doctor. He has a very bad habit of being dismissive when I ask a question. He does not explain anything to me, he does not consult with me, he does not share treatment options or answer any questions I may have. My mother reads my labs, she understands absolutely everything.
Example: A month ago, she was concerned with my platelets, hemoglobin, and some other things. She told him I was becoming anemic and she wanted to put me on iron and a b12 supplement. He said it was unnecessary. a few weeks later, I passed out cold before my infusion. Woke up and he was getting me ready for an iron infusion and a b12 injection, I was severely anemic. here are other examples, but I don't want to bore everyone with my negative feelings toward my doctor.
Thank you for reading my craziness, I am frustrated, to say the least. But, I am finally starting to wake up and take control of my life. I am ready to learn everything I can about this awful beast living in my body. I need to learn how to advocate for myself and make my voice heard. I am also excited to see the doctor at Moffit again. She was wonderful, in fact, that entire facility is absolutely amazing. I think I am ready to make the change to start the next part of this journey with them. My last taxol treatment is in mid-January. I want to make sure the right decisions are made for my next step.
I apologize for writing a book tonight, thank you to everyone who takes the time to read this. Peace, strength and love to all of you.
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Tiffany- Write a book any time you feel the need. I hope your change in doctor to Moffitt, if I understood you correctly, gives you the care you need and deserve. I think all of us would agree that it's very important to have an oncologist that we are comfortable with and trust, not only to advocate for the best treatment for us, but also to share the information with us that we want.
When I was diagnosed, I got a second opinion on my stage IV diagnosis right away. I then had to make a decision who I wanted to treat me. I ended up choosing based on how each approached the communication of my diagnosis. I went with the 2nd opinion oncologist because she was so much more sensitive in the way she told me this hard news and explained more to me.
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Tiffany,
Your mom rocks! I would really, really push for a better explanation of why he is choosing an old drug over a new one. My treatment facility, which is quite large, doesn’t use it at all anymore. Pamidronate is the drug name, Aredia is the brand name.
It sounds as if you are on a good path. It is a huge and ongoing learning process for all of us. Take care.
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Tinkerbell, I have the same experience when I think I hold on something but it slips away, like what Olma described, I thought it relates to neuropathy- post radiation that can’t be healed.
Old discussion on writing notes/ setting reminders, I both write down on my diary and set my phone clock but at the end I second guess myself did I take medication or not? guess what?! I ended up counting the pills!!!!
Tiffany, your MO is similar to my first one who I fired him. It is your right to feel comfortable with your physician, I would change him without any hesitation. Give you one example (which was his last) he changed my xgeva to prolia only after 4 cycle without my knowledge, didn’t bother to discuss it with me and wanted pet scan every 2 months I smell something is not right, I asked him explain, never saw standard care like that, when he started threatening me like discharging me from the hospital blah blah I switched to my second opinion MO. The sad thing I found out later was he put me in his study... several months later I met a woman in a virtual support group , she complaining about her former MO who did exactly the same to her and never answer to any questions etc and it was him! Since I switched I feel I am in a better place mentally.
I must add, prolia might prescribe for bone Mets as well when the Mets are small and stable for a good while and there is limited risk for progression but risk of bone loss is greater.
I am glad our cozy thread is active, hugs to all
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ooo snow drop neuropathy is good guess as a cause too
I tend to blame every pain on anastrozole especially if it is something similar to a sign of aging
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Tiffany214, are you on the Tampa side or Pinellas side? If you could, could you private message me new doc’s name from Moffitt. I am okay with where I am now. I have anemia, and have had it since before diagnosis. My iron was tested and was fine. I believe my anemia is because of bone marrow mets. It hasn’t dropped too low, thankfully. I’m sorry you passed out. I’m so glad your mom is there for support
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Snowdrop - do you use an android phone? The Reminder app let's you set a recurring reminder that you can mark complete ‐ or snooze it like an alarm clock. I have two set for every day (morning/night) meds. I just make sure don't mark it complete until I've actually taken the pills (learned the hard way, of course... I was just about to)
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Hi Snowdrop: Could we be twins? lol. I so relate to your posts. Next time you bring up a side effect or something that has changed since diagnosis. I bet it's spot on with me.
I'm still working from home and thinking to myself, when is my employer going to say get your arse back into the office. With the high numbers of Covid, I may be able to buy some time. If not, I will look into disability. A few months ago, I was seriously contemplating the same. I know some of you have retired or went on disability, how is the transition? I worry about time management or having some type of routine.
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tinker bell,
I was able to work until retirement this past June. As I mentioned, I never considered disability because I didn’t feel disabled. You bring up a good point about having some type of routine as that has taken some getting used to. When school started in the fall I had a weekly schedule for picking up my grandson from school, taking him to swim lessons, etc. I also became eligible to substitute teach in early December and plan on doing that about 2 days a week. Overall, the slower pace of retirement life took a bit of getting used to but I’m getting there! Take care.
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Tinkerbell- I'm on disability. I had to go on it very abruptly but nevertheless the transition has still been challenging. Once I got past the point where I was just surviving, I had to find things to keep me busy. I try to get out regularly. Some sort of routine helps but honestly I'm still trying to figure it out.
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I have my grandson to play with a few times a week. It’s so nice to be able to do whatever I want with him without being tied down to chores, a job, etc. I have things I can do around the house, but I keep looking at the chores and say, “tomorrow.” I do like the freedom not working has given me. Once I got on Medicare, we were able to have my husband retire as well. I had a job that required a lot of sitting and extreme attention. I was a closed captioner for the hearing impaired. When the pandemic hit, work got much busier, and a job could come up in an instant. I hated to say no. It just got to be too much, and I made the instant decision to go on disability. I was approved within a week. You just have to make sure you have enough money to make it the six months in between approval and the first payments and health insurance for the two years until Medicare.
I was making extremely good money at my job, but I felt my sanity and health were worth the huge cut in income. I have no regrets. I did make it one year working after diagnosis.
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As this year 2021 is winding down, I am thankful to be here, and thankful for all of you. Wishing good health for all of us in 2022.
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Tinkerbell, Happy New Year. I was in bed long before midnight. I feel the same. Hugs to you and all the special people on this forum
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KBL: Thank you. How are you doing on Xeloda? Last, I recall you are feeling better. Today I am a couch potato watching college bowl games and breaking every healthy rule for nutrition. What a way 2 start a New Year, LOL.
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Tinkerbell, I'm still doing well. No hand and foot syndrome so far, except my hands were peeling and dry for a few weeks but fine now. I eat like you're eating more than I don't and have become so lazy, except when I watch my grandson. Lol. Then I'm go, go, go. I have no desire to do housework or cook. I've always hated it but now even more. I don't know how to flip the switch. I don't mind being lazy, but my brain does. I keep fighting with myself. I still take my mile walk every morning. I need to start routines. That's the key. I have an MRI a week from today. I really hope it shows Xeloda is working. Even though I'm eating crappy,my weight is staying the same. I'm at the same weight I was when I got pregnant 33 years ago. Thank you for asking.
I hope you're feeling well.
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Hi ladies-
This is my first post on this thread. SondraF invited me to this thread over 4 months ago, and I guess its taken me that long to wrap my head around having MBC. 4 months ago I didn't know what de novo was when SondraF mentioned it when replying to my own post, I had to look it up. I spent the past few days reading this entire thread from start to finish. What a bunch of strong and amazing ladies!
I was diagnosed with IDC a day after my 48th birthday on Aug 1st, 2021 and 3 weeks later read and interpreted my own PET scan (long story) which showed a bone met in my L1 and possibly my clavicle. I am taking Kisqali/Letrozole w/ monthly Xgeva and every 3 month Lupron injections. I had my first follow up PET scan to check tumor response this week and have my MO appointment on Monday to review results. I did have an ultrasound on my breast at the end of October as I mentioned it felt like my primary tumor in my breast was getting bigger and not smaller. That revealed significant volume reduction in my primary tumor (I have several in the boob) and 3 mm reduction in one of my larger lymph nodes. I think based on that my MO is expecting a "good" PET scan report, but I've learned to expect the unexpected as they say on this journey. Im also not an overly positive person as a general rule unfortunately, although I was actively trying to work on that until all of this happened. Since diagnosis everything has changed and has been tinged with so many thoughts and feelings my pessimistic self has worked so hard to correct in my old life. Radiation seems to be on the table if this scan looks good.
I am just so incredibly sad that any of us have to be here. I had yearly mammograms with no issue, and my regularly scheduled mammogram was coming up in only a few weeks before I found my "spot" (different from the "line" I mention below), made an appointment with my PCP, and while waiting for that appointment started obsessively poking and prodding until I found the lump a few days before the appointment happened. I then remembered a day sometime during this long pandemic that happened. I think it was this past spring. I had gotten out of the shower and was holding up my ever sagging boobs and thought to myself that if I ever had a boob job (which I would have never had on purpose because Im way too scared-ha) this is how they would look, which was great except that one weird "line" across my left boob that I felt that day several times with both my boobs in my hands. I chalked it up to me holding mass amounts of skin together and grabbing from my armpits pushing forward and holding up, etc. When I let them go in their natural state the "line" went away, so I didnt think much of it. I play that memory over and over now, because what if I had questioned it more, would that have made a difference and allowed me to simply have breast cancer and not metastatic breast cancer.
Im still working full time-the pandemic pushed my company to permanent work from home thankfully. The only thing that has changed on that front is I stopped contributing to my 401k, which I needed to do anyway really. I am lucky to have a supportive husband who loves me and a strong family support on my husbands side (my family is crazy, minus my brother whom I love more than anyone on this earth minus my husband) and a few good friends who get it.
Emotionally Im all over the place-generally I am emotional, so mixed with this and the induced menopause and Ive been a wreck. I stay outwardly strong because its just who I am. I also feel very strongly about keeping my husbands general life and routine as much the same as before this nightmare began. We have had some difficult conversations to get them out of the way. I hope I have lots more time left than I think I do. Sigh.
I could go on and on - Im thankful to have found a place to vent and type where I KNOW someone, or everyone, will be able to relate and understand what Im saying and feeling..Its been horrible watching those I love feel helpless and not know what to say at times, unable to fix this mess. Thanks for reading if you made it all the way down here
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