A place to talk death and dying issues
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Thanks, Wandering. I've looked at that site before. I think they are just selling jewelry. I did more research and am finding that it is somewhat state-related. DNR rules vary by state. I looked again at the RoadID site and they have a good system (which I originally thought was free, but no $10 a year) and I may call them. I emailed a person there a few months ago and she gave me a phone number to call. I hate doing things on the phone.
I didn't spend as much time as I might have on it because I am reading a book called How We Die by Sherwin Nuland. Really excellent.
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I don’t like much doing things on the phone because too often the people on the other end are not very knowledgeable. Can’t get questions answered, canned statements. I looked up the book to see if my library has it but they don’t have the physical book nor electronic one. I seldom buy books anymore since I read them once and then they sit but borrow many for my kindle. My husband is not a reader so all my books will go to someone else. My doctor told me I have 6 months to a year left so I’m not buying much these days. I don’t know how accurate that is but my treatments have not been long lasting and I will run out quickly so I don’t think it’s far off the mark.
I need to get my advance directive finished but still need to make funeral decisions as I don’t want to be buried where I live even though I’m not going to know where I’m buried once I’m gone. My husband is not good at making decisions about things at home so want to have things in order. My family is used to me taking care of things so the whole cancer thing has been and to get them used to taking of things. I will look more into a DNR so they will know what to do
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Thanks for wise words everyone. This week I had "the talk" with my MO since my last option (a retry of Doxil) kept my bone tumors in chck but my liver mets are taking over fast. He says off the chemo I can expect a rapid recline from here, with continued Doxil perhaps a longer period of slow decline.
Meanwhile I am waiting for ht results of my Foundatio One tests (privately funded) and pressing my MO to look at Y90. He seems open to both and will bring be up to the tumor board within 3 weeks. Meanwhile my calcium levels contine to rise but I refuse to sit on a drip the rest of my life.
took a contact with that hospice/care faciity in Thailand that helps dementia patiends. They have had som BC hospice but they don't have the government permission to administer the amount of morphine needed towards the end, so you have to get transferred to a local hospital. But, maybe?
Somewhere in the word there must be a covid free facility, or air bnb with home nurse, where I could live out my last days? Are there no hospices for the middle aged and not demented? Cannot stay at home, where my two kids treat my like an insufficient servant, or an elderly care home which seem REALLY bleak and are Covid greenhouses.
How much of my kids inheritance should go to alternatives+ Private doctors willing to freeze/cook my liver? beestings to kickstart my imune system?Expensive nutritionists telling me what i already know? Second opinions from the US?
Hard to get MO to talk in terms of months yet. We are hopeing the new tests suggest a way forward. Promises to meet within three more weeks.
Signed up for the "Living beyond breast cancer " conference but don't see any help for end stage folks, expecitally with no careguívers.
apologies for spelling errors, neuropathy+hand foot makes writing hard. hugs to all, AMY
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Amy- Thinking about you after hearing about “the talk”. Any way to move up the Y 90 discussion? 3 weeks is a long time.
Keep writing. (Neuropathy spelling is a “thing” and we don’t use red pencils here.)
Sounds as If staying home is fraught with challenges. Many of us continue to search for a decent option, but you are right...it’s hard to find. Hugs coming your way ((())).
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arolsson,
Sending you virtual hugs. I hope they can do y90 on your liver mets to give you more time. Hopefully they can move your appointment up. I will help you do some Google searches for a hospice if you want. Just tell me were you want me to look.
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arolsson , is not a hospice the most straightforward and appropriate option? Our local one is a nice airy place with a view of the ocean and nice staff. Don't you have something like that in Sweden? My heart goes off to you. Are not there nurses around that could support you /give you ideas on set ups ?
Hope it all will be premature, and either local treatment will go ahead or foundation thing gets actionable info.
It must be immensely hard if you are the only one who can be your advocate and sort everything-one of the hardest aspects of living with this disease is that I feel sorry for myself as it is always me me me who has to do all. I do not feel I have a shoulder to cry on or someone to rely on and it in itself makes me cry.
I can not even imagine how bad it must be for you as you are in a more dangerous position at present..
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Amy, I am surprised to hear that there are no hospice facilities in Sweden. I thought that they would be included with medical coverage. I can understand why your are upset. Are there visiting nurse companies there who can send someone to your home to help or even just to give you suggestions on places or organizations that can help? Does your oncologist’s office have a social worker who can help find some possible solutions?
I do not understand why your children are treating you so selfishly. I do think it is time to put yourself first. If you need to use money for your own treatment and benefit, that need should be prioritized over the need for your kids’ inheritance.Have you been able to move up the date for the Y-90 discussion? Is there a reason why it is being delayed?
I am sorry that you are going through this difficult time without support. Please continue to post hear to keep us updated or to ask questions.
Hugs and prayers from, lynne
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It's been awhile since I've written on this thread but it feels relevant to do so now and I think this would be the more appropriate place than anywhere else presently to say how I'm feeling. I'm on cycle 10 of Ibrance. Between it and Exemestane Ive done pretty well. Stubbornness has kept me going and I got to a place of much better mobility quickly after the delays in getting started thanks to uncooperating ovaries.
My last MO visit (beginning of August) we went over "stable" scans from July 15th and 17th. I mentioned that my pelvis mets which were previously not causing me pain were beginning to from the inside. Now thy hurt to be pressed on. My lower back is flaring again and the mets in my ribs and sternum hurt to be pressed. She had mentioned she thinks the lung nodule that appeared in February scans but was left off of this July's report will resurface next scan. Anything 5mm and under she says is left off. Some irritation of some sort with the little air sacs in the lung in the lower right where the nodule is was noted this last report from July. Interestingly enough February was when Foundation One was done and my TM's jumped. Maybe that was progression afterall but we're sticking with Ibrance as long as possible. I'm so dang tired. I looked at my lawn, my happy place and I don't have the stamina to mow it. I collapsed on my bed exhausted, very sore and frustrated and sobbed for a good long time. Im too tired to move much and its just plan difficult to move now. My next MO visit is on the 10th. I'm not in a rush to go back to the cancer center as it takes an hr to get into that place with all the procedures in place ( no waiting room policy, must wait in car, must waited to be called inside, must be screened, must have temperature taken upon entry, only 2 in elevator etc). MO mentioned if we wanted to drop dose of Ibrance we could for the fatigue, but she really doesn't want to drop the dose in hindsight. I think she thinks it will fail faster if I do. Half wanted to add the lung thing to my lineup signature, but have decided to wait.
I'm not sure what's going on, but I feel like I am declining a bit. Its a fight to stay present sometimes. Been fighting agitation out of nowhere too. So dang angry in bursts here and there. I don't even know why. I'm not an angry person at all. I thought it might partly be due to hearing about another sister of mine from my chemo group moving to Stage 4. But Something just feels wrong. I feel off. I don't think I'm going anywhere tomorrow or next week or maybe even next month. But something has shifted. TMs were trending up again last MO appt. If Ibrance is failing, I think Ive had enough, and I drew that line a long time ago.
Just emoting and letting you all know whats going on. Boy that was tough to write. Emotionally and Physically. Enough to need 2nd nap of the day. I hope I can be graceful about things if my suspicions are correct. I'm truthfully a bit scared.
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Rabbit, I'm so sorry. I'm sorry you're tired, I'm sorry you're angry, I'm sorry you're afraid, I'm just sorry... Words can't help, but if virtual hugs can help along with virtual shoulders to cry on help, consider yourself hugged and "shouldered".
I hate this disease...
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Rabbit, it is so ridiculous and stupid that your MO doesn't want to lower the Ibrance dose. I have never heard of anyone who lowered their dose and then progressed. Have you? More importantly, has she? Where is the data that a lower dose is less efficacious? Ask her. What is she basing this opinion on? There is NO data. I've looked. Maybe you would be less down if you were not so tired. And you do sound down. And tired.
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Rabbit,
You are going through so much right now. Your friend is now stage IV, your pain has increased, your TMs are rising, you might or might not have an issue developing in your lung, you are suffering from fatigue, what should be a simple act of going to an MO appointment has been turned into a long drawn out drama. No wonder you feel the way you do. It sounds overwhelming to me. I am sure that the fatigue that you are feeling makes it much more difficult to handle everything. Add pain, and it just makes things even harder to deal with. Even without all those issues, life is hard right now. We can’t live normal lives even without mbc. COVID has changed everything. Toss in MBC and all your other issues, and what can you do? I would want to scream, really SCREAM. Then I would want to cry and find someplace to hide. Unfortunately, there is no place to hide, nowhere to run. It might be worth trying a reduced dose of Ibrance if there is a chance it will help relieve the fatigue. It would not rid you of all your problems, but it might make it easier to deal with them. Many people see response even with a reduced dose. Please let your MO know how you are feeling. Maybe there is medication that can help you through this.
As far as the future is concerned, only you can make decisions about future treatments. I know you are aware that there are many options out there. Each of us makes our own decision about what is right for us. Those decisions do not have to be made quickly, and they can be changed.I am sending you a virtual ((hug)). I wish I could do more. Please remember that we are here for you. In the meantime, take that nap. Be kind to yourself.
Hugs and prayers from, Lynne
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Hi, Rabbit. I had the same kind of sobbing cry the other day. I hadn't cried like that in forever. I really needed it.
I don't know what strength of Ibrance you're on. I was only on 125 for one month and then dropped down to 75. I have to say I felt a lot more manageable at 75. I still get tired and still need naps, but it just feels different.
I can totally relate to knowing your body and if something feels off. I have asked for different scans if I feel there is an issue. I've been right each time.
Trust your gut and ask for what you need.
I'm so sorry for how you're feeling. I am sending you a virtual hug.
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Rabbit,
I'm sorry to hear you are having so many problems. I agree with everyone else on lowering your dose. I just lowered mine a couple of months ago and it has made a big difference. My MO told me there has been studies done that 100mg works just as good as 125mg.
I struggle also with the feeling of being off. My PCP prescribed a antidepressant which seems to have helped. I also just started seeing a counselor.
I hope you feel better. I'm not really sure what else to say. Giving you some virtual hugs.
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hi rabbit
It is very scary so it is understandable you are scared.
Hugs and love
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Simone,
"My MO told me there has been studies done that 100mg works just as good as 125mg." Would your MO provide references for these studies? I'd love to see them. I know that in the original trial, as long as you stayed within the protocol (dropping dose when ANC dropped to a certain level for a certain length of time), the subject was left in the study. Efficacy data included all the subjects that stayed within those limits. There was no differentiation among doses. I'm sure Pfizer had that data but chose not to publish it. The choice of different doses was an advantage of Ibrance that they liked to highlight. Everyone liked it. My nurse told me that a drug that came after Ibrance was unpopular with the doctors because there was only one dose.
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Hi Jaycee, I have a office visit tomorrow and I'll ask my MO if she would provide some references. I'll post here, and the Ibrance thread once I receive the info. I know there has been a lot of discussions around that and I think it would be helpful for others who are trying to get a dose reduction.
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I've looked a lot for those kinds of studies and never found any. I do remember a poster session at the San Antonio conference that someone referenced here (Curious?) that did some meta analysis of the different doses. Very vague memory.
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Jaycee, I couldn't find anything either.
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Hi Jaycee, my MO said it is stated right in the clinical trial data that 100mg was just as effective as 125. I'm going to see if I can find the clinical trial.
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I was on 100mg Ibrance for 3 years. I was reduced from 125 mg after low platelets/ANC the first 3 months. It was effective.
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From therightdose.org:
3. Ibrance (Palbociclib):
A Phase II study that randomized 72 HR+ HER2- MBC patients to receive Ibrance in either a 125 mg or 100 mg dose in combination with physician's choice of fulvestrant or tamoxifen concluded that the 100 mg dose was associated with a lower rate of grade 3 or 4 neutropenia. Furthermore, both Progression Free Survival and clinical benefit were the same in both groups. Dr Hope Rugo was the lead investigator. https://www.targetedonc.com/news/reduced-palbocicl...
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MO said she would drop it but she was hesitant to. I mentioned I wanted to drop dose with hubby, he's scared for me to do it. I took everything in consideration and after another day of feeling like a used carpet I'm going to finish cycle 10 at 125, and I'm calling MO tomorrow to call in refills for me at 100mg. My reasoning is I've done relatively well on Ibrance. Have been on it 10 months now with stable bones and tiny lung stuff popping up which when it popped up was .67cm in February and recent scan in July has it under 5mm now. So I think I'll be okay at 100mg and I'm going to try it. Ibrance overall has been tolerable it's just the fatigue is overtaking me now and its stopping me from being in my lawn and taking care of my home. I dont want to live like that if a dose reduction could make it better. I'm kinda concerned it may not make a difference but you can't know until you try.
Thanks ladies for hearing me out and inquiring about effectiveness. I know many are concerned like me about dose reduction especially if it seems to be doing a relatively good job keeping the lion at bay at the higher dose. I'm not sure what I'm more irritated at tho now. Hesitancy of dose reduction or that "not a deep enough breath in" thingy i was told back in February. I plan on sticking with Ibrance until it's very very clear it's not working.
The combination of the pandemic and everything just sucks. They dont even let you bring anyone in with you to appointments where I go, so instead of 2 pairs of ears listening it's just me. I keep asking for my hubby to be allowed in they keep telling me no. Frustrating, unfair. Thank you Lynne for sorta expressing what I'm feeling, the snowball of everything. Jaycee, your reply made me chuckle a bit, coming in guns blazing.
I hesitate to emote here as much as I used to. Feel like it might be discouraging or overall depressing considering all that's going on but didn't want to post this in Ibrance thread for same reason. Anywho, let's see how I feel on 100mg next cycle.
Thanks ladies
Edited to add, thank you Simone and Shetland, that helps!
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Thanks Shetland. I was having a hard time finding the info.
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I have been on the 75mg since July of 2019. I was told it was just as effective as well. The only thing I can go on are my tumor markers and how I feel because only biopsies work for me, I’m doing fairly well. My tumor markers have gone down 100 and 200 points, and even though they’re still quite high, I know I have a pretty good sized tumor burden in my spine and stomach, so it doesn’t surprise me. All three of my markers came down slightly last month, so I think the 75mg is doing okay as well.
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Rabbit, Im sending prayers for comfort and peace. I hope you talk to your mo about how you feel. They should be able to help with pain. I also think you would benefit from an antidepressant. When I first was diagnosed with bone mets I flipped. Became depressed. I had to go on antidepressant which helped me to realize that my life wasnt over. The last 3 years has been a battle and I still have my down days. But its manageable. I have many treatment options and I now want to fight thru each one. But when Im done than I will be done. And that is a decision that we can make whenever we want. No rush. I would just make sure that my decision wasnt made by depression. Healing hug
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Rabbit, I'm so sorry about what you're going through. I'm on cycle 60 or more on Ibrance/Faslodex. Down to the 75 mg dose. Reduced dosage twice because of fatigue and low blood counts. Showing some progression but it's slow enough that my MO has agreed to keep me on this combo as long as possible.
Remember we are on palliative protocol. We get to call the shots on our treatments, prioritizing quality of life at times, and at other times, concentrating on the most effective way to stop the cancer cells. Life has to be worth living.
As for the office visits - Can you get your husband on the phone while you're in the MO's office so he can listen and ask questions?
For energy/relaxation boosts, I find listening to guided meditations with spacy music in the background helpful. If I'm calm, I can muster some hope that I'll feel better. If nothing else, sometimes I just drift to sleep.
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Hi all, just wanted to share this death planner, in case anyone is looking for something similar. In my case, knowing my husband has a tendency to say screw it to things that get overwhelming, I ordered this workbook to make a hard time, a bit easier.
Edited to add that I immediately thought of Lita when I saw the title, lol (excuse the S word)
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Wow, that's awesome, Mae. I've been having learning lessons with my husband with the app with all our passwords. He gets overwhelmed too because I've done it all during our 36-year marriage. I would beg him to get involved. Now he has to.
I didn't even think of this.
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Tried to go over tax prep with dH. Big failure. He Said will hire tax accountant...probably will hire house cleaner, too. Hope he gets a job to Pay for all those niceties..
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Mae, where did you get this? I think I might like to upgrade to a book. I might have to look for one. Didn't even know these existed. I have a "death folder" with papers I wrote passwords down on, where to find important things in the house, where important papers are for us ie: birth certificates, marriage license etc along with my living will/proxy. But its on lose paper and even tho they are in a folder they are lose and I'm worried he'll lose the papers. He's not very organized and he's depended on me to keep the home/finances running....even now...tho I'm trying to slowly start turning that over to him.
Part of whats bothered me lately is this slow/rough patch I've been going through with the fatigue. I've still had to do things like normal or they won't get done. It's stressful. He'll agree to do something but gets to it when he wants or forgets. He still is in denial of my diagnosis. We've always split things down the middle in terms of responsibility, I think he just expects me to always be around. Sometimes it clicks, but honestly I think he's too brokenhearted to really come to grips that his best friend isn't going to be by his side as long as he wants.
How do you ladies approach getting your spouse to take on more stuff?
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