I am sure that Enhertu may work well for many other women. I am not so sure that it was the medication itself, but rather the way it was administered and whether or not they considered all the medication I was already on.
I went ballistic on my onco. Because I never had chemo before. I had this ONE infusion and all my hair came out in bunches from ONE infusion and my hair was long. I did not even realize it was real chemo. That is my own fault.
Last week I went to a hair salon (a friend drove in from NJ) and had my head shaved. I was more depressed about seeing so many bald spots and hair all over my apt. I feel better now that it was shaved off.
I am angry at myself. I agreed to try it.
I no longer am using the walker nor am I falling anymore. It was a hellish experience. My onco said I am one of her patients that whatever med was prescribed for me that I suffered the worst side effects.
I called the company that makes it on a phone line to describe adverse effects bc I know for sure my onco was not going to report it to them. They were going to call her to see how she administered it. I am sure she was angry about that.
So I was done with Maimonides and vice-versa. So now I enrolled in home hospice. First, they said I need to go INTO hospice and I said no. I said I am not falling, I am taking public transportation, I shower again, and I clean my own apartment, etc. There is no reason for me to go in hospice.
So now doing at home hospice (it really is all about money). They had the nurse coming two days per week. I said this is a waste of time. I feel fine (yes, I am still on pain meds) and my friend who came in from NJ and had not seen me in a long time, said you look great for someone who has advanced cancer.
I do not like that a nurse comes every week. It is a constant reminder. Plus, you never have a set time or day. Today, she called and said I am coming over at 1:30 pm. She said the schedule changes every week. She takes my blood pressure. I got my first meds delivered by them and they drive in from the Bronx. They gave me a week's supply of Bisacodyl (a laxative). I am used to get 90 a months supply at 3 per day. So I can already see that this giving of a week's supply is all about money. I do not take naps and my appetite is back.
It is hard for me to comprehend that I have less than six months left bc of how I feel. So with the cancer center, I used to go once a month (sometimes 2) and was able to put it out of my mind (the cancer). Now with this nurse coming every week, I find myself getting annoyed.
Thank you to all that have reached out. Please do not fear the drug. Because it has worked for some women great. With me, I think it was my onco. I never had faith in her but I liked my palliative doctor so much that I stayed with the onco.
I wish you all well for 2023. I am dealing with one friend who feels like my other friend is going to get more money from my measly life insurance. She said well did you count the ring you gave her which you bought in Italy. I was so angry and disgusted with her bc it was all about her feeling like my friend is going to get more money than she is.
After I got off the phone with her, I was getting angrier and angrier and sent her an email saying First, who I give anything to is none of your business. You are guaranteed at least $1,500 to make several phone calls from FL and you are complaining about that. Just disgusted with some people.
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kearnan
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It sounds weird but I am not understanding why I do not feel so much worse if I am that close to dying. I am on the pain meds, but I am back to my normal self, eating and tasting each I am eating, taking public transportation, doing my own cleaning and laundry. I do not really like hospice. It is all about the money. I get a week's supply of each med and they drive from the Bronx to Brooklyn to deliver it.
I do not have any pain. I am not taking any naps. I am a bit confused wondering if I am that close to dying, that I should feel a bit worse.
I agreed to give hospice at home three months. If nothing changes, I am opting out of it though my only real purpose in doing it at home (since I live alone) was that when things get really bad (and I am thinking they will unless I am one of those people who die from cancer with no pain) that I then can go INTO their hospice immediately as opposed to paperwork being filled out, etc.
At first they did not want to take me as a patient at home, bc I have no family and they said the report says you have constant falling. I said that is a lie. My onco wrote that bc I told her I was going to a lawyer (never planned to). The only time the falling started was with that one infusion. That was scary stuff.
Hospice were not thrilled that even if they got me an aide (which I refused) that she would not be staying over and that they were not comfortable about me being alone at night. Now, they can see for themselves that I am more than capable of taking care of myself, the nurse is now one day per week. Even that is too much for me. But she is nice so we talk for a short period so I decided that I will think of it as a weekly visit from a new friend
what I love about you is no matter how dire things are, there is a dry, badass sense of humor that comes out in your posts
So glad you are feeling well. Pleased you seem to have made some good choices. Albeit difficult ones. I would also get a bit sensitive to a nurse showing up at random times But hopefully you’ll develop a rhythm and can just enjoy any extra help
And good for you for sticking up for yourself to your friend. Sheessh!
Glad you are feeling better! Sometimes “friends “ are just that in our heads and hearts and then they eventually show their true selves. I’m sorry that has happened to you. You are strong and doing the right things.
Hi,great you are doing hospice at home, that's what I am hoping to do and what my mum did. Gahhh greedy people! Hope you keep your independence up for ages 😊💕
I feel like I should feel alot sicker if my onco wrote down that I have less than six months. According to her calculations, I should be dead already. I did not eat ice cream for almost two years due to nothing tasting right with those meds. Now, I am eating vanilla ice cream with loads of rainbow sprinkles on it almost every night.
Have to add, when I started back with the onc, after being away almost two years and on nothing but letrozole hit and miss, after my pet scan, I asked him "so how long doc"? I will never ask that again because I was also told 6 mos. well I was already a year and a half past that, it was a stressful ride home and I will NEVER ask that again. Do they get off on scaring women or what? I, too, feel fine and only have to take a pain pill maybe once a week or two. Just my experience, my thoughts ....
Hi Kearnan. What a post. You are incredible. Sending you loving vibes.
Stay with the anger. Both at your annoying oncologist and you friend. I find that we human beings can be a strange lot really! Please keep us informed. Xxxx
There is a lot of dissapointment and anger I feel from your post and rightly so. But not all is lost. Im not sure if you have read Jane McLallends book.. but you can beat this,even stage4.. Loads of people cured themvselfselves. Give it a try. The author herself had weeks to live and 20+ years later she is here and well!
Thanks, but I am not one for reading about cancer, or juicing or some new holistic treatment. I am old school, I guess. I thought you were referring to this lady: "Who has lived the longest with Stage 4 breast cancer?
Kim Green defies the odds for those living with incurable metastatic breast cancer. Her mother died of metastatic breast cancer at 37, but Green has been living with it for 19 years. Green has endured more than 60 surgeries since she found a lump in her breast when she was 34 and six months pregnant."
Though she did undergo 60 surgeries and I would NOT be willing to do that. But she was only 34 and pregnant so she had a reason to fight it no matter how hard.
all of us are eligible for hospice, I almost signed up for it because of the added support you get, but then she told me I would be giving up the opportunity for trials or advanced treatments if they became available and I said, "no, I'm not ready for that". When I was taking care of my mama, I found out that certain conditions are eligible for hospice no matter how long you have to live. I thought mama would live another 2 years or so, and I needed the help, dementia is one of those things, along with MBC, that allow you to access hospice. they gave her morphine, she was gone in two weeks, I said, "but she isn't hurting why are you giving her morphine" and they said, "it's a low dose and she could be hurting and not able to tell you", which in my emotional state I took their advice and lost my mama. Hindsight IS 20/20 but maybe by sharing this you can be aware of the pitfalls. Also, you CAN come off of hospice and go back on when you feel you need it, but the 6 mo. thing is just blanket statement/timeline thing they tell all patients i.e. some alzheimers patients and dementia pts. can live for years after diagnosis, yet they are eligible for hospice. Hope this helps, knowledge is power and SO GLAD to hear you are feeling so much better! I, too, have such a sensitive system I will NEVER try en-Hurt-U, thank you for sharing your ordeal! sending love and prayers that Jesus will heal us all, amen! XOXO PS I think you'll find the attached article informative! came back to add, I'm doing the ibrance 5 on 2 off schedule and hoping it works better than the last time I was on ibrance. I had read somewhere but now forget that ibrance, as well as letrozole, work again after a brief stoppage but you'd have to look it up as I've slept since then. I sure hope it helps because the last time it gave me chest pains and I got scared and stopped it immediately, but I felt really well on it for the 4-6 mos. I took it (I don't take notes and my memory is not great) I still take the melatonin, ginger, and fenben and I am a bad patient because I don't tell the onc everything because I don't want his input if I'm going to do it anyway, what's the point? just more stress for me. (I will try to shut my mouth now LOL) vitas.com/hospice-and-palli...
I love that you omit telling your one things that they don't want to hear. I do the same. I don't want to upset them nor do I want to enter into futile conversation when I've done the research and have made the decision, one that I feel is best for my particular body.
exactly, and it only upsets ME but I'm still going to do what I FEEL is best for me and if I tell them they may take away my current prescriptions as they all act like they are gods who "give and takes away".
My palliative care doctor at my former cancer center said There is no reason any patient who has a terminal illness like cancer should suffer any pain. I was also honest with her. I was prescribed by her 240 oxys a month to take one every 4 hours. I told her I do not take it like that.
I take three in the morning, one in the afternoon, and three later during the night. She said as long as you are not exceeding 8 per day and it works for you I am fine.
The hospice nurse said you are only supposed to be taking one every four hours. I said I have not done the label thing. I do what works best for me. She seemed shocked that I could wake up and take four 20 mg. of oxy and not be tired. I said one did not work. I will take them as works best for me. And I said if this is an issue with your boss, then let me know now and I will seek other options.
I am having hospice at home. I refused their offer of having an aide. The nurse was first coming twice a week and I said this is too much and not necessary bc I feel no pain (am on pain patch and oxycodone) so basically I feel "normal." I keep waiting to feel worse. Hospice scaled back to once a week for nurse and my nurse can tell I am not thrilled with hospice and said if after three months, I do not get worse, I can revoke it at any time.
But I am in Brooklyn and they have an excellent IN HOSPICE. Since I live alone and have no family, there will come a time when I may have to go IN HOSPICE, and since I am already in their at home hospice, it will be done quickly. If I opt out, then when I need hospice, it will take much longer bc of all the paperwork so for now I am dealing with at home hospice.
I would NEVER do a trial, not after the experience I had with the FDA approved infusion of Enhertu. It was a horror for me. I do not think it was the medication, I think they did not counter in all the drugs I was one or the lack of experience of the person who injected me.
Good thinking! That's what I love about you, your intelligence and your can do attitude! Changing the subject, I have cousins in NY and NJ, I'm in Texas. Funny thing is I've never met them as one is from my mother's side and the other is from dad's side (I didn't meet him until I was 25). Really cool thing is they both have winter homes in the villages in FL only 3 mi. apart so I do plan on meeting them all someday soon. My dad's family was from Pelham, NY. They went bust in the great depression and moved to Houston, TX. So maybe now when I tell you if you sound anything like Fran Drescher, you gotta call me, I just love her accent! I sense an eye-roll but that's ok; love and prayers to you and you got this! I believe as long as we're alive we can get better at anytime because our bodies are of such an intelligent design, that as long as we are drawing breath things can change! God bless you and heal us all in Jesus name, amen! <3
You are correct. I am so so stressed out about the fact that when I go into hospice or when I pass, I have nobody to clear out my apt. (My friend is like you will be dead, you will not care) which is true. All I can think about is my landlord (we do NOT have a good relationship) and I live in a coop building and she also lives in a much larger apt. two floors down from me is that her and other geese hen friends that live here will be going through my stuff.
I told my friend I wish I could die, come back to earth, and take care of removal with the life insurance and then fly back up (assuming I will be going up LOL)
Hubby's from England and they have removal services for houses and apartments. Maybe you could set something up in advance for one to be called and then take a percentage of the profits for themselves and give the rest to a charity of your choice. Just an idea, and the last thing I want to do is offend. Just wanted to pass on the knowledge of how they do it in the UK; and you could rest knowing your not so nice landlady and her geese hen friends (funny words there) won't get their hands on your stuff!
You advocate for yourself so well! It was certainly wise to insist on not moving into a residential hospice! Maybe the nurse will realize that twice a week visits are more than you need when she's gotten to know you a bit better. I wouldn't like the unpredictable schedule for her visits, either. And when you know her better, maybe you can reframe her visits so they aren't primarily about the awfulness of this lousy cancer. How you are feeling says more about your health than any of the blood work or scans! Know we are here for you!
We are down to once a week. She can clearly see that I no longer use the walker, my apt. is always clean and I do my own shopping and there was no need for her to come twice a week. So we are down to once a week.
All her other at home patients live with family and are unable to take care of themselves. Not there yet. Wondering why I do not feel sicker if I am that sick. I was thinking of going to another onco but I would have to get out of hospice.
Before I signed up with Calvary, the nurse from Visiting Nurses came (they assess you first and you decide who you want to sign with) told me No, you have to go to hospice. I said excuse me, I am 62 years old (now 63!) and nobody tells me what I have to do. I am NOT going into a hospice center. You just read the report my onco wrote and there is a reason for that so do not tell me I have to do anything bc I do not.
Wow, l hope when l go on hospice my meds aren't doled out to me like that. So sorry about your 'friend'. I wish you continued spankings of spirit, remember you m as there do much. I wish you continued independence, peace, love, compassion from others and yourself. 🌺
It is all about money. It is ridiculous and annoying to me to get just enough meds for one week. I said to the nurse what is behind that thinking.....to make sure that I have to see you once a week to get my next weekly dosage. I said it is just about money. Never about the patient. They delivered 21 Bisacodyl tablets (laxatives) at 11:30 at night. It was NOT an emergency. You cannot reach the nurse ever. There is just one main number to call. I am not that impressed.
The guy drove from the Bronx where they get their meds. It is the most annoying thing about hospice. And the doctor (as the nurse calls him my boss) who writes the scripts went to a medical school that teaches wellness and holistic medicine. How the heck did he get hired for this position? At least my palliative care doctor at the cancer center had years of experience doing hospice first and then palliative care and specialized it in medical school. I am going to ask the nurse how the heck did you "boss" get that position?
Hi,Gosh, it was so good to read your fighting spirit again. You go girl. You make us all clap for you. We are your cheerleaders. Please let folks help you though. You are special to this board. Prayers and blessings to you. Hannah
My gosh, what a roller coaster! But so glad to hear you're off that ride and able to do things for yourself again. Enhurtu sounds like a nightmare. And a slap upside your doc's head for not making it clearer that it was chemo - she should never assume you know that. Kudos to reaching out to the company that makes the drug. They need this information and obviously, the oncologists don't always forward it to them.
You sound like me with the hospice nurses coming on their own schedule. My 93 y.o. mom lives with me and has had several falls resulting in-home care after rehab. Ugh! No nurses or physical therapists ever came at the same time or on the same day. Made scheduling my own appointments a real juggling act not to mention annoying just having them there to take her blood pressure (which I can do anyway!).
I am kind of forced into even having to have a nurse come here once week (I quickly stopped the twice a week which was just a waste of time.) Which is why I think they just dole out your meds on a weekly basis so that you are forced to have the nurse come otherwise you have no meds.
That Enhertu infusion was quickly approved by the FDA in August of 2022. So they had a number to call if a person ever suffered adverse effects. I truly believe it was NOT the medication, but how they administered it. I never in my life experienced hallucinations like those which were real and terrifying, unable to stand up with falling down hard on my head, loss of memory, I could not even add basic numbers. It was a horror.
I was NOT expecting the hair loss. I went to have the infusion, then went home. Apparently my palliative care doctor called me at home more than 12 times and when I did not pick up (I was told during the infusion I was talking gibberish and not making sense), she called in for a wellness check. The police who brought along EMTs had to break down my door and found me in the bathroom with blunt head trauma. I was put in the hospital for three days and had no memory of what happened and when they would not tell me why I was there, I went ballistic and they then let me go home. I found out I was there for three days. A few hours after returning home, a friend had to call for a wellness check on me and again EMTs had to come into my apt. (the door was still broken down so no lock) and they wanted me to go to hospital and I said No, I am never going back to that hospital again.
So glad to see you back and fighting. We were all very worried about you and I think half of the group ready to fly to NY and hunt you down to help.
Your information about Enhertu is so helpful. It was mentioned by my doc as a possibility down the road and I started asking the chemo nurses about it...they all look horrified and all say that it should be a last resort med because of the side effects. My oncologist said that the potential heart problems are very real and CT scans need to be done every 3 weeks.
It is only supposed to be given to patients with MBC that have had chemo before. I NEVER had chemo in my life. I was on hormonal meds to battle the cancer. It was my own fault. I had no faith in my onco at all but I liked my palliative care doctor bc I would tell her I had no faith in my onco (they were in the same building, but communicated through email) and I only stayed bc of her.
Oh my goodness, it is so great to hear from you Kearnan. You are a fighter and you are making sure your voice is heard. I am glad you have help. That "friend" is not good for you and I am glad you said something to her, people are so greedy.
So glad to hear you're off the walker! It sounds like you're kicking butt and standing up for yourself. Maybe you don't have the time or energy, but, if you have the will, you might consider doing a 2nd opinion with another oncologist in a different medical group to discuss whether you can/should get out of hospice. Sending the best of wishes your way!
I am thinking of doing that. The only aspect holding me back is if things suddenly change, I would immediately be able to get into their hospice whereas if I revoke it, there is a good chance they may not take me back and if I wanted to get into their Brooklyn hospice (just 25 rooms), it would take more and more paperwork, etc.
If it were not for what I went through after that infusion and never agreed to it (I am so angry that I agreed to it) I would have just going to another onco more experienced with stage iv. I had asked my onco once (we were both angry at each other the last few months) if she even had a stage iv client before.
That's a huge red flag in an onc, to have only one stage 4 patient!!! My onc for example specializes in brain mets in MBC patients. Do you have a guaranteed hospice spot if you stay on hospice? How long is their waiting list? If they can't guarantee a spot you'll have to look for another hospice? Is the only barrier the paperwork, and can you ask someone else with more energy to fill it out for you? (I also hate paperwork, ugh!) If you need a backup hospice if they don't have room, maybe the time you would spend finding a backup hospice is worth spending on finding an onc? No idea, but these were the first questions when I read your reply.
I did ask the nurse how long most people in hospice that live there last. She said an average of 3-4 weeks. I am not even thrilled with being in at home hospice. It feels like (and I am in reality) just waiting to die. I cannot go to any trial experiments, or see any doctors relating to my cancer. They only accept patients that they are told only have 6 months or less. I hate the feeling that I am just waiting to die and I hate how they d the meds.
I am trying to see if I can find an oncologist who specializes in advanced breast cancer patients. I would rather continue to fight (BUT NO MORE CHEMO), than just accept the fact and do nothing.
Oh it is so good to hear from you! Your journey continues but sounds like it is better now that you are not taking that drug. Thinking of you and as someone else said, I would love to fly down and visit. But meanwhile your updates mean so much. xoxo
I remember crying thinking I would never be normal again after that one infusion and I said to my friend over the phone, that if I stay like this, I cannot live alone and I was scared. It took about 3-4 weeks for that crap to get out of my system, and I no longer use the walker and I no longer fall and except for my bald head, I do not really feel sick. That is the confusing thing. I feel like I should feel sicker (I am taking pain meds though) if I am going to die.
Dear Kearnan--What a wonderful turn around and well done, you! It appears that you are up and running, again and making decisions that some health professionals might disagree with but that have put the life force back into you in spades.
Yeah, not crazy with the hospice only doling out on week of meds every week. They drive from the Bronx to deliver them. I mean I got 21 Bisacodyl tablets (laxative) and they delivered them the same day the nurse visited me and it was 11:30 at night and they drove from the Bronx. It is always about money. I think they fear if they gave people a month supply, they would not see the nurse once a week. I feel fine, nothing has changed so not sure why I need to see her once a week so she can take my blood pressure, and ask me what is the last time I had a bowel movement and what did I eat during the week. I said I don't like this...the cancer center didn't ask me about my bowel movements and what I eat during the week. She wanted me to write down what I ate during the week and I said no. I am not doing that. I said this hospice thing is a major change for me after five years of the cancer center and I feel it is way too intrusive and just about billing money.
it’s hard to give advice when we’re all going through the same thing differently, but if you are feeling well, I think it’s worth exploring another oncologist.
At this point, wouldn’t it just be a consult anyway? I mean, hospice wouldn’t cut you off just for looking into it, would they?
Then the new oncologist can determine a go-forward plan that includes, or doesn’t include continuing with hospice at this point 🤷♀️
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stage 4 breast cancer and hair loss
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