De Novo Stage IV
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Down to 115.5 this morning. That's a total of three pounds down in a month. I'm so hoping I don't lose more. I really am trying to eat. The nausea is just icky for a few hours. Then I get hungry and can eat some, and then the nausea starts right back up. I told my husband if I fell below 115, I would call doc. My appointment is a week from Monday for my monthly visit. I just want to wait and am feeling okay otherwise. My energy level is decent. I slept hard last night from 8-6:30. Zquill is so good sometimes. Even medical marijuana isn't that good. Lol.
I was at 134 when my journey started. I'm only 5'1", so 115 isn't bad for my frame. It's just that I haven't been this little since before I got pregnant for my daughter 32 years ago. If I hold at 120, my husband doesn't worry as much. I know he's only trying to help when he tells me to eat.
Has anyone else taken Compazine? I really don't want to take it, but I may have no choice. I’m sure someone has said they have.
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Hi KBL, glad to hear you are feeling a bit better but sorry about the continued nausea. When I started radiation and Ibrance quickly after i was prescribed both Zofran and compazine to deal with nausea. When it was really bad I would take a Zofran during the day and sometimes a Compazine at night....because it is supposed to make you drowsy I didn't like to take it during the day. If I was having trouble with nausea it did calm it down and help me sleep. But I haven't taken it that often.
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Thank you, prairiesea. If I take it, I’ll definitely only take it at night. I didn’t know that. Good information. I’ve had Zofran too, but it causes constipation. I already deal with that, so I don’t want to take that.
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KBL: How are you feeling? Hopefully you are doing better sustaining weight. The last few days my tummy is off. So I'm taking probiotics and see what happens. I got up early and took a walk, heat index is going to be 106. Not accustomed to a hot climate. Hence all the yard chores were accomplished by 7am. This feels like a job. I'm off work this week. Debating to medically retire which is something that is emotionally painful for me. The problem is I feel good now but for how long??? With applying for OPM and SSDI it takes a lot of time with paperwork, etc. Plus If I am eligible it will take 5 months with SSDI and OPM over a year due to a back log. So do I be proactive and apply now or wait until progression and being emotionally a mess. I recognize we all go through these life transitions. Just needed a place to ventilate... So glad to have this thread, mainly to keep me "balanced"... I hope everyone has a good day and hugs for all those who are not quite there yet...
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Hi, Tinkerbell. I'm still about the same. If I'm not nauseous, I'm not hungry, so nothing sounds good. I'm still eating but wouldn't if I didn't have to. I'm sorry your tummy is off too. Ugh. I took the Compazine for two days. Doc said it won't constipate me. I haven't gone in four days. Yes, it does cause constipation. I was on such a roll with that too.
I have been on SSDI since May of last year. I chose to stop working because it was getting to be too much. I was working nonstop and was exhausted. I'm so glad I did it. I have a lot of insomnia now. I can't even imagine how stressed I would be not being able to sleep and then having a schedule. I find I don't get upset when I can't sleep because I can take naps when or if I need to.
I applied for SSDI on a Monday and was approved the following Monday. I am now eligible for Medicare on October 1. I'm so glad I did it because not only did I get to stop working, but I took the pressure off my husband to have to carry the insurance, and he's going to retire in December. He would have had to keep working if I didn't stop so that I could have insurance.
Only you can make the decision. I didn't plan on leaving when I did. I was on vacation for a week and just told my husband at the end of the week, I was done. I was self-employed, so I could just stop.
Hugs.
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tinkerbell,
I just retired in June. I taught for 10 years after my stage IV dx. I loved teaching and have no regrets about not retiring for medical reasons. I felt well, looked well and carried on fairly normally. Of course, I had no idea how/when/if my bc would progress so it was hard to think in terms of that or plan my life around something that might happen at some time in the future. I was fortunate to be able to keep my life almost the same as pre-bc and I believe that it was a huge factor in my emotional/mental state. Essentially, there was no reason for me medically retire because I wasn't debilitated by my health.
You will never be able to predict the course of bc. If you are able to work, if it gives you purpose and joy, keep working. My retirement occurred despite bc not because of it. I had always planned to retire at 65 and my school district offered a wonderful “buy out" option to teachers who were close to retirement age. This gives me a nice extra chunk of money each month on top of my state pension. I still adore teaching and will start subbing in December. If you like your job and you feel fine keep working and don't base your decision on what might or might not happen in the future. I never imagined I would be doing this well after ten years, yet here I am. All the best with whatever you choose
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KBL: Sorry to hear your situation hasn't improved. Not eating well, not pooping, and toss in insomnia, Boy, I hope you turn this around asap. I'm sure your energy level is depleted. No matter what I'm struggling with I recognize someone is hurting more. Appreciate these wake up calls. My dilemma struggling to retire is so insignificant in the grander scheme. Having quality of life, meaning it's not how many days I live, it's how many days I live well doing what I love doing... Unfortunately my job gave me that sense of purpose. Planning to retire it's something I worked for, waiting for this moment. I did not anticipate medical retirement would be the ending... I need more time obviously to mentally work through this transition. I'm glad you were able to retire knowing it was time. Take care my friend...
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Tinkerbell, OPM fast-tracked my medical disability due to Stage IV/terminal diagnosis. It certainly was a process to get to that point, and approval is not automatic. And OPM uses some fuzzy math formulas that change over time.
I had to completely stop working to be approved for SSDI. I'd been pushing myself to work a couple hours a day - trying not to leave my boss and coworkers in a bind - and that would have disqualified me.
My husband was really worried that I would be too sick to manage the processes if I waited. I was so exhausted, and we didn't know if the treatment would work, or for how long (still don't know that part). It was a huge relief to have it done and not have to try to keep up with my very stressful job. There's no way I could maintain it, then or now.
With bone mets, your situation could be completely different. If you feel good, can and want to keep working, that may be your best option for the time being.
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Tinkerbell, you’re so sweet. Your struggles are truly just as important as anyone else’s, including mine. I really am not feeling too horrible, believe it or not. I think my grandson truly makes me put things on the back burner as far as feeling bad. I stopped working because I could, and I got to spend a lot more time with my grandson than I would have. That was another huge motivating factor. I agree, if you love what you do, do it as long as you feel you can. I did love my job, but I got much busier because of the pandemic and didn’t know how to say no.
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Exbrnxgrl: As always, You are spot on. Thank you for your perspective. You are an inspiration to us all. Enjoy your retirement and subbing in December. I'm sure your colleagues and students are excited to have you back in school.
SeeQ: Wow. I had no idea OPM has a fast track program. From my understanding everything they do is slow. So this weighed on my mind heavily for I was concerned having to wait over a year for benefits. I hope you dont mind me asking how long did your medical retirement take for approval, and then monthly benefits?
KBL: So nice to have your grandson to brighten the day.
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He came at just the right time, two months after I found out. He has made a world of difference in my quality of life. I love my husband and daughter, but he has needs, and I have purpose.
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KBL,
I can relate! My older dd found out she was pregnant about a week after my dx. The idea of a sweet grand baby, my first, sustained me through those dreadful early months of stage IV bc. She is now a very delightful 9 year old and I have two younger grandchildren as well. They really are my greatest joys 💗
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exbrnxgirl, wowww, that’s awesome. They are so much easier than children. Lol. We spoil them and send them home. I will most likely only have this one because my daughter is my only child, and she had complications, so they told her she may want to stop. She sent me a video of him today having a temper tantrum at his other grandparents’ house. He swatted Grandpa, then he looked like uh-oh, I shouldn’t have done that. Then he threw his head around a few times and plopped on the floor. He didn’t make a single sound through all of that. My heart melted. I said my husband would probably be okay if those were the kind of tantrums I threw. I’m going to take lessons. Haha.
I’m so glad you’ve gotten to enjoy them too. They are the best.
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KBL,
You are so right about grandchildren being easier! All the joy with none of the responsibilities of a parent😉. Both of my dd’s and their families live very close to me , though my eldest is moving to Napa (CA) soon. It’s a bit less than 2 hours from where I live, but it’s quite lovely. Enjoy every minute with your grandson.
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BCO released palliative care guidelines, it includes some guidance for managing pain, insomnia, fatigue, stress, and eating (thinking of you KBL). I think it is helpful on how we navigate our difficulties, interesting that oncologists should direct MBC patients to nutrition clinics, exercise therapy etc. I highly recommend to take a look at this:
Thread: https://community.breastcancer.org/forum/8/topics/880701
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Tinkerbell - I sent you a PM.
Snowdrop- thanks for sharing the article; it was an interesting read.
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exbrnxgirl, two hours isn’t too bad, especially if it’s beautiful where they’re going. I would visit a lot. Lol. Mine is 10 miles away, thankfully.
Snow-Drop, thank you for the link. I have an orthopedic appointment this morning I have to get ready for. I will definitely look at this after. Don’t want to rush.
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Just to clarify, the BCO article Snow-drop mentioned is about a paper written by folks at MD Anderson and University of Adelaide, published by ASCO.
https://ascopubs.org/doi/full/10.1200/OP.20.00622
Optimal Supportive Care for Patients With Metastatic Breast Caner According to Their Disease Progression Phase
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I found this study ver useful and helpful for our conditions, we de novo s, we don’t know what we don’t know. What is called progression for us happening at once before we even know what it is. an example about one of many se I had/have that nobody in my care team bothered to let me know how to manage it: RO changed the course of radiation from curative intent to palliative (of course nobody cared to let me know about the change, I understood months later when I saw images of my pet scan). I experience shortness of breath, my lips color turned blueish, and fatigue was in high, what I got: it is what it is you have to deal with it, or MO extremely brief would say “these are se of ibrance, we can’t do anything about it” which was wrong, all was on radiation. few months after radiation mri showed 2 spots in my cord, of course the young neuro oncologist wanted to make a lot out of what images showing so she ordered mri with contrast one after another one, every 3 weeks, then 4 weeks then 6 weeks then 8 weeks then 3 months then 4 months.... enough to affect my quality of life and so my heart... I then realized that those spots are inflammation after palliative radiation not Mets, in fact I should take high dosage of vitamin c ( a friend of mine who received radiation for her thyroid cancer, got this vitamin c treatment through her doctor friend, interesting that her doctor/ friend told her that most oncologists don’t bother to prescribe after treatment care). I also got benefits of breathing therapy which suggested for Covid patients- again learned from a friend not my care team! I think these 2 simple therapies could have helped me a lot at the time I needed and I not only did not get those suggestions but I directed to a complete wrong path (living in scare of Mets in cord, many many unnecessary mri on benefits of a junior neuro oncologist for her research etc). So again I believe this kind of studies are a lot useful for de novo s.
KBL, I am glad you finally get to see orthopedic, I hope s/he can help you figure out and comes with solutions. I am still trying since February to get my oncologist on board that I need to see an orthopedic!
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Thank you, ShetlandPony. I am a little busy this morning but will definitely read everything later.
Went to orthopedic this morning. Good news is the bones in my hips are pretty stable. Bad news is it’s bursitis. I got a cortisone shot in each hip. After they were done, I got extremely dizzy and awkward feeling. I sat for a minute but just wanted to go. I sat in my car and hoped I would make it home okay. I didn’t call my husband because he would have wanted to come get me.
I called my primary when I was leaving. I’m having issues with my heart palpitating more than it usually does, and before I got to the doc office, my heart rate would not settle down. I am going in an hour, and they’re going to do an EKG. I’ve had heart palpitations from my thyroid, and I keep thinking that’s what it is since I can’t get it regulated. It’s driving me bat shit crazy.
It’s been mentioned before about people thinking others think they’re a hypochondriac. I’m there right now. Lol. I will still get it checked. I am at the point where I’m so tired of doctors’ appointments. Ugh. We do have heart disease in my family, so better to be safe than sorry. I’m sure it’s probably my thyroid causing the palpitations. They are so annoying
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Oh my KBL. I hope your palpitations are something easy to fix. I am also having ortho issues with my hip. My ortho doc wants me to have an aspiration of fluid and then a cortisone shot. But.....I have to schedule it, stop Ibrance (for white counts), stop blood thinner for several days, do under fluoroscopy, etc etc. Good grief. You just did the cortisone right then?!
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Hi, Candy. I think about you often. Yes, right then and there. Didn't think of my meds at all. I am on my off week, so I guess that's good. I bet my ANC will be up. That happens if I go on a steroid pack. It will be interesting to see if it has an effect. Thank you. I hope you're doing okay. I've had something done under fluoroscopy before and asked him. He said no need.
Primary did quick EKG. Of course, no palpitations then. She’s going to order a heart monitor for a week just to be on the safe side.0 -
KBL, I hope you are feeling better by now, good decision to see your pcp right away. Take care
Candy, thinking about you, I saw your post on liver thread, I hope your team come together with a best treatment plan for you. (((hugs))) please do post about anything, vent if you want, we are here for you.
I decided to do my X-ray in a local clinic, it was a cozy clinic with kind and nice staff, I like the way they treat patients with respect and care, I wasn’t a number for them. The technician asked some questions and then she said in order for radiologist doctor to read carefully, it is better to see bone scans reports, of course the larger nci designated blah blah doesn’t have time to fax a report, so I should wait 14 days, that’s ok... Foundation One kit has arrived to my address, apparently my MO or her nurse wants me to do on my own, as they didn’t respond to F1. so F1 people helped me to book an in home blood draw with their partner. Honestly I am not comfortable with this, because I am a different person at home, don’t want something like that in front of my family...
booster shots approved by FDA for immunocompromised patients, I have no clue when we should get the third shot?
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Thank you, Snow-drop. My hips are sore, as they should be, being shot with cortisone. I’m feeling a little better. Im just laying in bed resting. Today took it out of me. Lol
I read the links you gave. I am a little confused, because looking at the four phases, I feel like I am all of them. Smoldering is what I would consider the six years they couldn’t figure it out. As the years went by, it was progressing in my spine all over, but they still thought it was multiple myeloma. Then it rapidly progressed to my stomach, with symptoms. Then I was diagnosed de novo.
Shetland Pony, thank you for the link to the guide. I read that as well. Very interesting.
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Thinking of you KBL and Candy.....so much going on, I wish you could get a rest. In the meantime, sending hugs and prayers.
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Thank you, prairiesea. Here I sit after sleeping two hours. Lol. I’m sure I’ll get back to sleep by 2:00 or so. It usually takes a few hours.
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Boy, my hip pain is almost nonexistent. I was able to take a longer walk yesterday and get a lot done at home, even with the eating issues. It goes to show that not all pain has to be cancer related, or maybe if it is from the cancer, the cortisone definitely helped. I’m looking back and am thankful I didn’t do radiation to my hips when it was offered. I’m not sure it would have helped at all.
My husband and I had a long conversation over the weekend, and I will be talking to doc today about switching up medication. It’s so scary to think about switching. I have no way of knowing if the cancer is causing the eating issues. I’ve been able to stay above the 115, so that’s good. My husband has been able to stay more calm since I haven’t dropped below the lowest I went.
I know any of you who have switched meds knows the fear I have about switching too soon. I’ll keep you posted.
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Glad to hear you’ve gotten some pain relief KB
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Great to hear that your pain is better KBL. What kind of med changes are you considering? Hope the conversation goes well.
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Hi, prairiesea! I talked to her today about thinking about changing. She wants to get a CT scan, which never shows anything, and then a few more weeks on Ibrance. I know my next treatment is either Afinitor or Xeloda. I'm leaning towards Xeloda. The problem is I don't want to jump ship too quickly. I was on the Zoom today, but we are getting some squalls from Fred, and my Internet kept cutting out.
Anyway, I don't know why, once again, I'm having eating issues. I think the whole thing with this is a mind game because the cancer has never and will never give me easy, quick answers. I am at a frustration point of not ever knowing what's causing me issues at the time. I go to that space in my head of, well, is it all in your head? Are you creating the issue? I know I'm not, but that's where the mind sometimes goes.
My ANC was up today, but I had to remind her why. Cortisone is a steroid, so they were nice and high today.
Do any of you go to the doctor and think, "Why do I even talk to her or him?" I feel like from now on, I just want to go in, get my bloodwork done, and tell her everything is fine. She came in today and was in such a hurry because she was behind. I hadn't ever felt that from her before.
I've been with them since June of 2019. I think they get to the point that they think you're doing fine because you're still here and that this is the way I should expect it to be. I feel like I need to get out of my head's way. I hate that feeling.
I hate that the imaging doesn't help me. I hate that the tumor markers never went back to normal. I hate that I am having trouble eating.
Sorry, having a bit of a rough day. I know you all understand. I'm sure I'll be better tomorrow.
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