I feel good. I do not even feel sick. I still am on strong pain meds, but I no longer need the walker (the enhertu infusion from hell).
The nurse comes twice a week at first and I said No, not necessary. So they cut it down to once a week. It is ridiculous. The nurse writes to her boss (the doctor) for exactly the amount of days until my next visit. I said to her I guess this is to make sure people have to see you so that they can get their medication.
Plus, I said I looked up your doctor (her boss) and he graduated from a medical school for holistic medicine so how did he wind up in hospice. He cut my pain medication from 240 a month to 180 a month which I get just enough for a week.
When I complained I said my former palliative care doctor, who is board certified in hospice and palliative care wrote it so that I could 1-2 every four hours as needed. The nurse called him and then called me back and said "he said he is not comfortable writing it like that."
I said well I am not comfortable with a doctor who is working in hospice and is more worried about his own comfort level of writing a script which I have been on for 3 years than he is worried about his own hospice patient's comfort without him ever seeing him and I won't bc he is in the Bronx.
I shower, I take the train and the bus (since I do not drive), I no longer use the walker, no more hallucinations from that infusion and I feel better than ever.
You are NOT allowed to get any type of tests done to "prolong your life" and Medicare would know. This hospice wants me to contact them first before any doctor appointment.
I told her today this is a waste of time. Most of the patients she visits at home are on oxygen or in a medical bed in their home. I have no aide, I clean and do everything myself
And according to my onco, I should be dead by now and nope, not happening. I think when I read about the increase in SSDI that gave me the energy I need back bc I thought I want that money LOL
Now though I cannot go back to the cancer center I was going to bc the infusion, and it was only my first one, was horrific and what I went through that the hospital called the police to check on me and they found me in bathroom talking gibberish and then I could not walk with a walker and I thought it was permanent.
So I had threatened my onco that I was going to "show the lawyer" the photos of my legs and all the stuff that happened (I had no intention of doing that) but I had a screaming match with my onco. I was furious with her so cannot go back there.
But if I was told less than four months in November and I still feel great, never tired, etc. I want off hospice bc I do not need it now. When I started interviewing with them, I was still suffering the effects of the infusion. No more and now I want to see I am not feeling the least bit sick so I want to know if the cancer continued to grow in my liver or did it stop now or what. I do not understand how I can feel so good when I am supposed to die.
So opting out of it and going for a second opinion which I should have done earlier but that infusion did me in so bad that I thought it was permanent.
I want to know what is going on. Now, I am nervous about trying to find a second oncologist for another opinion.
If any of you want for a second opinion, did you have to bring all your medical records (five years!!!) or will the new doctor request them and do I pay for that?
I just into hospice too soon and she asks the same questions, what did you have for breakfast. I truthfully said the same thing I had last week when you asked. Breyers vanilla ice cream and added rainbow sprinkles. Having my taste back I was like a monster. I was told when and if I need it, I can rejoin at any time.
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kearnan
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OMG,that’s wonderful!! The fact that you feel perfectly fine is already a good sign. Hope you find a doctor for second opinion ASAP,maybe your condition has been changed and you just need to continue to take different medication. I’ll pray for you❤️🧡💛
The feeling good is probably just bc I am not on any heavy duty meds so I am looking at that with a grain of salt. I had lost my sense of taste for so long with some of those meds, that once I was done with treatment and my sense of taste came back, I was awful. Eating everything I could. I probably gained so much weight that I had lost from not eating. I keep reminding myself that the cancer is still spreading in my liver. I hated that I could not have any kind of tests, even blood tests, while doing at home hospice. I was not even sure what it was. But it is not for me. When on hospice you lose Medicare, since hospice pays for everything. So next week they know I am going to revoke my agreement with them and then go back to my original palliative care doctor. I did not even realize I no longer had Medicare. But they said when it does get really bad, I can rejoin. It was way too early for me to need it but I was still suffering from the effects of the enheru infusion and was sure all the side effects were permanent. Luckily, it is out of my system and I am not longer falling uncontrollably, I can add and subtract (it messed with my head bad) so my clarity of mind is back and I no longer use the walker nor do I need an aide.
I just decided that I was done with treatment after that and not willing to do any trials after what I experienced. So with the remaining time I have left I want to feel as normal as I can.
It is great news that your feeling good and able to function normally I'm happy for you and I hope the other issues resolve over time and you get your second doctor and they're good to you. kind regards Joanna
It is absolutely wonderful news that you are going to get another opinion!!! Medicine is moving fast on options and I just bet there is one for you! Congrats! --Trish
No, actually I am going back to the same cancer center with the same onco (that should be an uncomfortable appt.) so that I can continue to see my former palliative care doctor instead of this hospice doctor who cut my pain meds after three years (he went to a holistic school of medicine - how is he working in hospice LOL).
I am NOT looking to go on any more treatment. I just want a CT scan and bloodwork to see what is going on and why am I not dead (according to my onco) but feeling better than ever. One reason I know it is because besides the pain medication, I am no longer on any meds for the cancer so I am not suffering any side effects and feel great.)
I know it sounds stupid but why was my onco and then hospice telling me I was close to death. This is crazy, I know. I never would have gone on hospice if I did not have that infusion. I would have went on with my life and no second opinion. That infusion was 100x worse than any pill I had taken in the past. So I am done with things like that.
My friend who I had not seen me for years came by for a visit and she said except for being bald (thanks Enhertu...after five years of pills, one infusion of that and I am now bald.) She said I look healthy. I feel great too. So I am a bit confused and I want the right to be able to do what I want and not have hospice ruling my life.
The CT scan and bloodwork will show you what is going on, yes, but if you feel good why not get another opinion? Get someone else to assess what is going on and recommend other options. Obviously, the infusion you had was the wrong med for you. That is why you need someone at another cancer center to assess where you are! --Trish
Because I really like my palliative care doctor that is at the same center. I do not want to continue treatment anymore. I feel better than I have in years (probably bc I am not on any strong meds). I am feeling no symptoms at all when the cancer is in my liver and tumors were spreading rapidly. Yet, here I am and no symptoms at all so I just want a scan to see if it has slowed down or what is going on. I cannot do that while on hospice. You have to get permission for everything and I cannot do anything that may be seen as "life prolonging." I just jumped on that wagon way too soon.
Oh my goodness, I am so happy to hear that you are feeling better. Woohooo, celebrate your life girl, go get that second opinion and if you need to speak to a lawyer about your previous oncologist. I am tired of doctors who will not listen to what a patient is telling them. I am smiling so hard because of this news, thank you for giving me something to smile about.
No, I am done with treatment. I think that is why I am feeling so good. I only continue on with my pain meds. I basically stopped treatment in October of 2022, and my onco told me I had no more options and had about four months of life left. I came home that day and then sent her an email that I was going to get a second opinion (which I never planned to do but wanted to hear her reaction) and within five minutes, she called me to say there were some other options (she is an idiot) and I decided to go with the one that I thought had the least bit of side effects which was that infusion.
I thought I would not live until Xmas (that came and went) than it was New Years (that came and went) and then I was sure I would never turn 63 (that came and went). So now I am thinking I am enjoying this quality of life with no heavy duty meds and never ever will I do chemo. I never even knew that that infusion was chemo. It actually states that it should NOT be given to a patient who has never had chemo. I probably signed something but my onco had said minimal side effects with minor hair loss. I was so devastated by the effects (especially my long hair falling out in chunks when I expected no hair loss.) I do not want to waste any more time of my life on getting an attorney, etc. though I did threaten to sue her.
That was a big mistake on her part. I did call the company that makes that drug and reported to the FDA (bc it was fast tracked) about what I went through. They both had numbers to call if a person had severe side effects. I am not even sure it was the medication. It very well could have been too much or given to me incorrectly, but the cancer center will NEVER admit that.
My onco actually said to me (the second time I talked to her, the first time I have no memory but I apparently asked her if she really went to medical school) that I came in that day and looked like I was stumbling and talking gibberish. (This was after I said I was going to sue).
I said really, that is how you want to play this game. You are a liar. I have an appt. with her in two weeks LOL.......
Its so great to read you are feeling so good 😁 you sound so upbeat it brightens my day. Go and get that 2nd opinion asap and let us know how it goes. We are all routing for you, sending love and positive thoughts to you xx 🤗🤗🤗
Definitely get a second opinion. I go to Sloan Kettering and I highly recommend them. You can take car service there. Typically you need to sign something with your present doctor to release all records to your new doctor. There is no fee to you to do this. You want to bring as much documentation as you can to a new doctor. Tests, etc, Tests can be put on a disc for you to bring to a new doctor, results of PET scans etc. You can ask wherever you had the testing done for copies of these without even asking your doctor.
I am really replying to Kearnan, but putting it here to add on to Avid. Or Mount Sinai, also highly rated. Also, you are no longer getting a second opinion. You don't have a doctor now, an oncologist, so anyone you see now is primary.
When I got a second opinion at MSK, some intermediary company did the whole thing of gathering and transferring records. I had to sign to let them do it, but they stayed on top of it, asking what about the biopsy?, etc. No charge until I accidentally ordered a hard copy and had to pay for that. Now I have this stack of papers to the ceiling that I never wanted. Even without a company like that, you just sign a release then the new hospital requests the records -- don't they?
LOL...you asked me a question I never even thought about. I have no idea what I signed, I was still suffering the mental and physical effects from that infusion when I signed on with Calvary. I know that Calvary said my onco stated in a report to them "that I had a clinical history of falling." I said that is a downright lie. I never fell flat on my back or face until I had that infusion and then I could barely walk for weeks.
I do not know if they have all my records. Thanks, I will have to ask that. I imagine that Maimonides still has then also.
I honestly do not want treatment anymore bc I am feeling fine just with my pain meds. I just do not want hospice telling me I can or cannot go to any doctor without their approval. I want my old pain doctor back so I have to get out of hospice first and then after five business days, I am supposed to get Medicare back.
Thanks though bc that never crossed my mind. If you think of anything else, let me
Thanks, but I had Medicare and full Medicaid (pooled trust spenddown). I was told that Sloan Kettering does not accept NYC Medicaid (and I do not have the money to pay for 80% of anything LOL)
I do not want treatment anymore. I just want control over my life (hospice has so many rules). I just want a CT scan to find out why I am not feeling sick if my liver is supposedly shutting down. This way I can then continue own with the same pain doctor at the cancer center.
I am done with treatment. I feel great now. I have to revoke my hospice agreement (forms, of course) and then I get Medicare back. UGH....the forms I have filled out since my diagnosis has to be in the hundreds).
Just wondering if my cancer slowed down in my liver bc I am not feeling any symptoms and for the most part (except for that one infusion) I have stopped treatment since mid-October.
So glad you are up and about! Hope you find another doc that works for you. They will request your records. I would make appointments and talk to them before you commit to a new doctor. It’s your life! Best of luck!
Do not want any more treatment. I feel great and since it is October when I last had real treatment (the hell infusion was done in mid-November) so basically I have been off meds since October. If my liver was even close to shutting down, I think I would feel some side effects right. I just want my old pain doctor back (same cancer center I went to and a CT scan to find out if it is spreading slowly or what). So I cannot do that until I am off of hospice and get Medicare back. Confused bc I feel so good!
what drug were you infused with? I had a really bad reaction to an infusion too, and I had the same horrible feeling it was permanent. I could barely walk, all my hands and feet were numb… on a
Enhertu. It is a medication that has been around for years for other conditions, but the FDA rush approved for women with stage iv breast cancer. It was supposed to be one infusion every three weeks for 90 minutes.
I just had one infusion and all hell broke loose. (I wrote down in a post called Enhertu) everything that happened starting with the day I got the infusion (the police had to break down my apt. door and found me unconscious on my bathroom floor) and it got worse from there. BTW, I also had extreme numbing of my hands and feet. It was awful. I am wondering if you had the same infusion. I just had it once for 90 minutes and my life changed and not for the better after that.
Oh my goodness your post has made me so happy - I am here with a huge smile. I really hope you get to see another onc asap, and that they not only can tell you what is going on, but that you connect with them. As someone else said in this thread, we are all rooting for you. Giant hugs xoxoxo. Peggy
hi Kearnan, yea my understanding is that you can stop Hospice to take active treatment and then rejoin later when things change. It doesn’t seem as though you needed it so glad you stopped it. Long may this hiatus from cancer last… I know that the Erhertu was awful for you with side effects… but I agree with you, you should get back in for a scan to se what is going on? After all you went through with the police busting in to get to you.. you deserve a miracle… so I hope that new drug worked for you even if it was so ghastly!
Yes, the nurse is coming tomorrow at 1:30 pm. I definitely need her to call in my pain patches otherwise I will be without it for three weeks. But she knows I was thinking about it and said I could always come back when things get worse. It is just confusing to me that I feel so good and yet my onco had told me four months was all I had left in October. So I am wondering why I am not having any symptoms. But I am thankful for the time I have now.
So good to hear some good news! I've changed oncologists twice since we moved and all I had to do was sign authorization forms for them to get my records, I didn't have to pay anything extra for it. That's how it works here in Texas anyway. I told them what meds I was taking and my history with the cancer and we went from there. Easy peasy! Our insurance keeps calling and wants to send people to our house and I keep telling them, we're old, but we're not in need of home services yet; so medical coming to you is something they're pushing whether you are terminally ill or just old, just so you know. I'm funny, I don't want strangers in my house unless it's necessary. Here's to us, here's to LIFE, long may we run in Jesus name, amen! <3
Hello there. I follow the ladies here even though I have stage four ovarian cancer, because I feel we are kindred spirits. I had to respond to your post because a couple of weeks ago, I received a call stating that I had been “referred” to have a nurse come to my home three times a week. I was having a rough week already and this call was just too much. I asked who referred me and they said Humana had. I have been satisfied with Humana insurance, but I called them in tears and told them to to stop pushing into my grave. That’s how I felt! I was incredibly upset. I spoke with a kind young woman who stayed on the phone with me for a good ten minutes going from screen to screen making notations that I should not be contacted by third party vendors. I told the woman that my days are filled with chemo and CT scans and lab tests. I explained that my home is sacred and the only place I can get away from doctors and nurses and feel some small measure of normalcy. Your post truly resonated with me and I wanted to say that I hope we will no longer be hounded in this way!
I know, and I hope I made it clear that they are hounding everyone and trying to come into their homes, not just the sick, but mostly the old I'll bet! Thank you for your kind words! You are not far from where we live in Beaumont! God bless you and heal us all in Jesus name, amen!
Thanks for replying. But that is why I always (even with this site) check the cookies and uncheck "able to send me advertisements, etc. based on my medical condition.) For the most part anytime I join anything, I check the cookies first and usually my cooking settings are still there but with some sites, I have to uncheck that box this way I do not get contacted by any type of agency or pill manufacturers, etc.
So that can very well be how they tracked you down and started sending you stuff. I have learned to do that for any type of forum board (even non-cancer related) and uncheck that box otherwise I would be getting loads of spam.
Kernan, l am thrilled that you are feeling well and caring for yourself and taking transportation. Thankful your horrendous experience and symptoms were not permanent. When bad symptoms happen it often feels like it's going to be permanent, l have learned to tell myself - it's going to change, life changes . . . I did get a second opinion, in fact l have had to switch docs 3 times (once because the doc who was very good moved to another state; twice because the docs were awful. The second opinion ion and switching docs was worth any discomfort in doing it. I did get my records to the new doc before l saw him, he read them before l saw him, he was kind, thorough, summarized everything that had happened, asked why l was seeing him and accepted me as a patient. I did not have to pay for my records. If the records are a stumbling block for you perhaps n ombudsman or patient advocate can help you OR make the appointment without the records you need a new doc!
You have literally been through hell with your experience with enhutu!
You deserve a doc who listens, cares and gives quality care.
I hope l will know when my hospice time comes and that it is a right fit and that l don't have the problems with it l have read about on our board.
Kearan, you don't feel like you are dying because you are not.
This, every here and now time is precious time.
Find a doc, consider their recommendation, they can't medically 'cure' you. You decide your next steps and Know that you deserve respect, listening and intelligence from the medical community.
I guess my original post was confusing. I do not want to go back on any treatment (I am still on my pain meds though for three years.) It is once you sign with hospice (and at the time I signed, I was still suffering the side effects which went on for weeks bc of that infusion and needed a walker) that I thought I was going to permanently need a walker and my clarity of mind would not come back. So I thought I needed it.
They immediately started to say I had to go INTO hospice and I said no but I agreed to hospice at home but by the time that started, all that crap was out of my system and I no longer use a walker, my clarity of mind came back, etc. and I realize I do not need hospice. But I only want a CT scan to find out if it slowed down or what, but I want my old palliative care doctor back who is at the same cancer center.
Hospice you are not allowed to get bloodwork or CT scan or anything that they deem could be "life-prolonging." So no more with them as I clearly do not need it now and this way I can get Medicare back (five days after I sign the revocation of the hospice agreement) and go back to my old pain doctor.
She though cannot order the CT scan, only my onco who I cursed out and threatened to sue. LOL Should be a pleasant visit
Hospice is free for anybody. The meds, nurses and if I have to since I have no family, go INTO the actual hospice room in Brooklyn. So you do no longer have Medicare bc everything is paid for. Medicare pays them something. I get two meds from my primary doctor, ambien and xanax. Hospice only provides meds which were prescribed to me by the palliative care doctor.
The nurse is nice but I do not need this. Same questions every week, did you eat this morning, did you have a bm, are you throwing up.......
I asked and the people she sees in their homes are usually on oxygen and in a medical bed. I do not like having to answer to them about going to doctors. I will wait until the time comes and rejoin. I was still suffering the side effects from the infusion when I signed on to them. But now I am cleaning, taking buses and trains, walking, etc. I do not need them at least not now.
We are all doing the happy dance, clapping and singing because we are so happy that you are feeling so good. Now, now hope you find the right oncologists. Best wishes and Blessings. Hannah
I just want out of hospice (so restrictive). I cannot even get bloodwork done without their approval. I just want a CT scan to know why I not having any symptoms if my liver was supposed to be shutting down. Plus, I want to decide when and if I want to go to a doctor. Their doctor (you never seen him, he just writes enough meds for exactly a week so you are forced to have the nurse come to see you.)
So I am done with treatment but my former pain (palliative care doctor) cannot order a CT scan at my cancer center so I have to go back to my onco to tell her I want a CT scan done. I reached out to my former pain doctor through Linkedin.com bc I was not sure if she would even talk to me since I threatened to sue her and my onco LOL.....
She said if I get out of hospice, even if I refuse treatment (I am done with treatment) that I then can still get her to write my pain meds.
Oh my lands. If it is not one thing, it's another thing. Fingers crossed 🤞 that this will all work out the way you want it. My wish is for you to be in control. You know what is best for you. You are loved by this board. We are not only your friends, but we are your relatives too. Please keep us updated. Blessings and prayers. Hannah
So glad you are feeling better. When we went for a 2nd opinion at a National Cancer Institute-designated Comprehensive Cancer Center they wanted everything. All records, reports, notes etc. They also wanted all slides from any biopsies that pathology reports were based on. We also provided a chronological time line of when we started and or changed medications. If I were to supply this info they requested it had to be faxed so it could be reviewed prior to our appointment. Otherwise they have to contact all care providers etc and wait for them to submit their records, etc. Slides had to be sent directly from the institution that extracted them. In our case it confirmed our treatment path which is good but nothing new.
I was so tired and depressed from Ibrance and aching from the Letrozole I quit for a few months and felt great. Then I went back to the onc and labs were worse. So now I am trying Faslodex and Everolimus. Better so far but have also developed bad back pain. Getting radiation for that now. I hope it works bcs I am not liking living on oxycodone and morphine. There is a reason they call cancer the silent killer. You don't know anything is wrong until it starts invading vital organs. So find an onc who will listen and is willing to look for a more helpful solution before there aren't any more. The one thing I learned from my hiatus is to try Hyperbaric oxygen even though my insurance won't cover it. It is giving me a lot of energy. I am also finding the nurse from palliative care useless and annoying.
When my cancer went to my spine, I had severe pain. One day I was able to walk, the next day I could barely walk 1/2 block without having to stop and lean against something. It was a year into my diagnosis and my onco said to me at the time, probably arthritis, not everything is cancer-related.
I was very naive then about being my own advocate so I just listened to what she said. She wrote me an rx for 800 mgs. of ibuprofen but I had to take like 7 of them at one time so that I could walk and it only dulled the pain.
The next CT scan showed the cancer was indeed in my spine. She then referred me to the palliative care doctor who gave me the pain meds (started out with percocet, and then moved to oxycodone.)
I then had radiation done bc I was told the cancer was getting too close to my spinal cord and once it did that, I would become paralyzed. Great. So I had three weeks of radiation and my palliative care doctor upped my pain meds bc she said for a few weeks after radiation, my spine would probably hurt more.
I have been on the oxycodone now for three years. It works and as long as it allows me to have a good quality of life, I will continue to take it. I do not get sleepy on it (I do not drive though but never did LOL) and I had no bm problems bc now my body is used to it.
According to my onco I should be dead by now from what she previously told me. I guess I just need to know if it slowed down or what bc I do not understand why I am not having any symptoms but you are right. Probably a week after I am unenrolled from hospice, all hell will break loose (the way my luck has been going.)
The cancer has been in my liver since February 2022 and every scan it kept growing and I stopped treatment in October of 2022. Not sure why I am not even having some symptoms of my liver shutting down.
That is how I feel about this hospice nurse. Comes every Tuesday, same exact questions. Am I eating, am I having bms and when was my last one, do my legs hurt, etc. It is annoying and I told her so. I am not even allowed to get blood work done or a scan without their permission and they will never give permission for anything that is life-prolonging so the heck with that.
I have learned that oncologists do not know everything and that I am my own best advocate. I wish you the best.
What a crazy story. You have been through so much! But it is wonderful to hear you're feeling so much better, and back to your usual self it seems!
Don't stress about getting a second opinion. I know it sounds daunting but you make an appointment, or first call and ask then exactly what they would want to see. They may not need all 5 years worth either. You call your current hospital's medical records department and they will guide you. through the steps to have them sent where you need them. Never any need to see your old doc again!
NYU was very good for me when I was living in NYC. And I know plenty of women who have been very happy with Sloan (though I personally have witnessed stuff a friend went through there that I was not happy about at all, so I have a bias against them, and my own second opinion there in my Stage 1 days that turned me off too).
Hoping you can find someone else quickly. Onwards!
Not moving onwards LOL....I do not want treatment. I was ready for it to be all over but here I am. It spread to my liver in February 2022 and each CT scan showed it was spreading. Then I started a new treatment but it continued to spread and that is when my onco said I had about four months left and that was in October 2022.
I feel good now. I am under no illusions that it disappeared or that I will live for years more. But I am fine with feeling how I do now with no pain. Just that hospice has so many restrictions and I need Medicare back so bye-bye- hospice.
I just want my palliative care doctor back so I Have to go through this to get her back. I do not have to have treatment with the cancer center but I do have to be out of hospice completely.
So not moving onwards or backwards, kind of stepping to the side to enjoy feeling this good for as long as it happens.
I see, so I'm sorry that I misinterpreted your reasons for wanting a second opinion. I completely understand how you're in a bit of a strange in-between place with the health system. I wonder then if you were to contact your palliative care doctor, to ask them how you might best approach getting back there? That doctor probably has certain oncologists that they have a good relationship with, it might make the route quicker. Seeing as you already have a relationship with that doctor they may even be willing/offer to make contact for you, to make it faster.
I have got mets to the liver too since October '22 scans. I have an underlying fear how this will pan out as I am still working towards finding my next effective drug. But I'm really glad, that you're feeling good right now, which really is the most important thing!
My onco referred me to my palliative care doctor once it was found in my spine and made holes in it. It is a one in everything cancer center. First floor, are social workers and the finance department, the basement is where radiology is located. On the other side is the palliative care doctor. They have even lawyers that volunteer at cancer centers one day per week. They did a power of attorney for me, a Will (LOL...my estate which is nothing) just so that my friend in FL can pay to have my stuff removed from my apt. I did not want to go to another onco there bc they are all close together and it would make her look bad plus I am sure she would tell them lies. Something went very wrong. I think it was more the way it was administered it to me than the actual medication. I was falling with no control and hitting my head on my hardfloor calls. Falling flat on my face and that hurt. I had to get a walker and I could not even add up simple numbers. I was scared it was permanent. I said I would never ever step foot in there again, but here I go.
I hit it off with my palliative care doctor and she knew I was NOT happy with Dr. B at all. I did reach out to my palliative care doctor on Linkedin.com (a business site with people's resumes) Apparently what happened to me went around the cancer center. I was told I was NOT allowed to speak to my oncologist. That infusion messed me up big time. My onco said I am the only patient she has ever had that suffered every side effect that the treatment had. I was on one 50 mg. of Verzenio (she started me at 2 100 mg. per day, I stopped after a week bc I could not control my bowels.) She then put me on 75 mg. and same thing and I stopped. She was kind of fed up and said well I am giving you the lowest dose which was 50 mg.
I felt great. Plus, I was still getting the falsodex injections. I just do not know when it first spread to my liver in February of 2022 she kept me on the same treatment. It was not until my next 3 month scan (which was on my patient portal the next day) and it said the tumors had spread aggressively. I wonder why now she didn't change my treatment plan once it stopped working.
She said well, you had a good run. Towards the end, both of us kind of disliked each other. I had no faith in her but I liked my palliative care doctor so much and could talk to her about anything.
I was told by my palliative care doctor if I got off hospice I could continue to go to her without any treatment. But I am curious to know how many more tumors I have now bc I am not having any of the mentioned side effects if it is shutting down. But I was told you could feel great and then the shoe drops.
I am so happy that my appetite came back. It was depressing and I was losing so much weight (that I needed to) but I had no appetite bc everything tasted like cardboard. It was a bit depressing. I would force myself to eat an apple or a banana. Now, I taste everything. That infusion and the entire experience scared me like nothing before. I was having scary hallucinations. When I woke up in hospital, I heard the male nurse saying I was going to get a stent in my brain and I started screaming. No, I refuse it, nobody is putting anything in my brain.
I truly believed my onco was trying to kill me and that my palliative care doctor was trying to warn me. I was terrified. Thank God my palliative care doctor who left me about 15 voicemails to call her back (apparently I started talking gibberish and not making any sense).
The police had to break down the door to get me to me and I was found in the bathroom unconscious and then in hospital for three days. All I remember was sitting in the chair for the infusion and then waking up in the hospital and nobody was telling me why. I never went to go through that again. I had four different hallucinations and in every one, people were trying to hurt me. Apparently, all this happened in my apt., but in the hallucination I was somewhere else and I had people talk about killing me. I am done. I will enjoy how I feel for as long as I can.
Well you had such a great relationship with your palliative care doc, I would definitely try to contact her . I totally understand your curiosity about the state of tumors at present, however if you have really decided not to further treatment I’m not sure of the value gained.
You have been through such a horrifying experience.( I get partly how terrifying that must’ve been because once, after we had moved house, my husband went on a weekend biz trip, right after I had tried a new self-injection the doc had prescribed, and I had excruciating pelvic pain and a head pain , very alarming when you’re alone!). Needless to say your experience has left you very traumatized. It’s not surprising you had those hallucinations.
I’m so sorry you had to experience that. Is there somewhere you can go to talk about your experience , a social worker not affiliated at that center?
It’s great you have your appetite back! Now you can enjoy your meals again, that’s a win! Hugs to you
Hi Kearnan: Wonderful to hear you are doing so well! I also encourage you to find a new Oncologist. Sometimes you can download your most recent medical records off you previous oncologist’s online portal and/or send them directly to the new doctor’s office. In NY there are many reputable cancer centers to choose from.
Kernan, omg so glad you are doing so well. You are amazing! Usually, when you want a second opinion, your last doctor will have you sign a release form and they will send your records to your new doctor. Good luck! It is so good to have you back!
Thanks. If you read any one of my numerous responses (LOL), I am done with treatment I decided. I want out of hospice bc they have so many restrictions. I can do everything myself now. I hate that my hair is sprouting back and I look funny but heck that is the least of my problems. To get my old palliative care doctor back I will have to see that onco again as they are at same cancer center. mind you I threatened to sue both of them after that infusion. If it were not for my palliative care doctor calling the police to do a wellness check on me (they had to break down the door) and found me unconscious or something, I would probably be dead.
There were about 15 voice mails left from my pain doctor the day of my first infusion begging me to call her (apparently the erratic behaviour started with the infusion) and just one voice mail from my onco annoyed that I was not there for my MRI.
I think that is what triggered by palliative care doctor to call the police to do a wellness check on me. Everything is in the one cancer center so they knew I was there because I had the infusion but I also had an MRI scheduled for 3 pm that I never showed up for.
So that got my palliative care doctor nervous bc she probably found out or see how I was doing the infusion and that I was not calling her back and that I never went for my MRI which is on a different floor so she then called the police.
I probably would have died if nobody called and I was in the bathroom by myself and both of my doctors knew I had no family or friends that lived close by.
All I remembered is that I was sitting in the infusion chair and then the next thing I woke up in the hospital (and I had been there for three days...) Scary stuff
I told my onco a few weeks later that it was terrifying. I realize how telling her I was laying on a bathroom floor, and a towel turned into a face and was telling me I was going to get hurt. I said now I realize how crazy that sounds, but it was very real for me. They think I was on the floor for several hours. Then I started screaming in the hospital (not the cancer center). An ambulance took me home and not even two hours later, a friend called my Landlord and asked her to check on me bc I had called her in FL and I was not making any sense.
The door was already busted open so my LL easily opened it and I was laying there naked for hours. I could not get up. I was so so thirsty I was crying. She called EMTs and I had four of them in my apt. while I was naked (I said to them this is at your own risk to see me like this). They said I needed to be brought back to hospital and I said no.
No. It was much longer than that. I had the infusion, apparently went home (don't remember this) and the next thing I know I woke up and I was in the hospital. My friend in Fl had no idea where I was and said it took her three hours to find that I was at Maimonides hospital and had been there for three days. I could not walk without falling and once I fell I could not get myself up. I could not add up simple numbers, I forgot how to write my name, I cried bc I forgot how to pay my Verizon bill. My memory had so many holes in it. I had no idea what happened and when I called the cancer center to speak to my onco, I was told I was not allowed to speak to her. So I tried to leave a message on her voicemail and somebody picked up and said Sorry, you cannot leave a message for her. I had no memory that she called me when I was home and before being brought back to hospital and was screaming at her.
She was telling me I had a very high calcium content and I started saying "Be quiet. What you are doing now is trying to deflect what occurred. I said you know something went wrong." I did not realize or remember that conversation at all until my friend in FL told me I told her about the call and I asked my onco if she got her medical degree online (oops).
I needed a walker for everything. I could not get even get into car service bc I was unable to lift my leg bc they all have those SUV vans but with nothing lowered. I thought I was permanently damaged. So I am not into trying anything anymore. When hospice first seen me, I did look awful. I had loads of hair that came out, numerous bald spots but I had nobody to shave my head. Hair was all over the place. I would just touch my hair and half of it would fall out right on the floor. Finally, a friend came in from Staten Island and took me to a hair salon where they shaved the rest of my head. My friend said you have a nice round head It was better to be bald than having just tufts of hair sticking out.
One of the most scared I have ever been in my life.
I really do not want any more kind of treatment (that experience with Enhertu scared the heck out of me) and that was rushed approved by FDA in August 2022. I was still having trouble walking when hospice first came around and looked alot worse. I did not think I would ever return to normal again. But now that it is all out of my system, my thinking is clearer again, I walk without the walker and no more falling.
I am NOT on anything but pain meds (oxycodone and a fentanyl pain patch). From what my onco had told me I should be dead by now. But when in hospice, you cannot go to any doctors or have any scans, even blood work that would be as seen as "prolonging life".
I do not understand since I am not suffering from liver damage (the liver is the next place it spread and according to my onco, it was spreading rapidly) and yet I feel great and have no symptoms thus far of my liver shutting down.
I just want to know if the cancer slowed down OR if it is continuing to spread bc I am not understanding why I am not having any issues (I Know that is a good thing, but it is confusing me.)
I found out (after I reached through my former palliative care doctor through Linkedin.com LOL) and she called me. I told her I want out of hospice but am afraid bc then I would have to find new doctors. She told me no, I could come back to Maimonides.
She said she would send an email to my onco (and I thought here we go bc I had threatened to sue both of them). So then my oncos secretary called the next day to make a scheduled appt. with my onco (this is going to be hard). I just want one scan to see what is going on in my liver and then go back to the same palliative care doctor who is affiliated at and is at the same cancer center.
So I am tired of this hospice crap, so telling the nurse on Tuesday I am revoking my agreement (but after she puts in my med request) so I do not run out and this way I can have a CT scan and then just go back to using my same pain doctor that I had and not deal with this hospice crap. It is all about money with them.
Just confused as to why I am not seeing or feeling any symptoms that I am even close to dying. UGH.......
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