I am HER2- and was given this "infusion" on 11/18 after being told I was out of any more options and had about 3 months left. It has been hell since then. I do not believe it was the medication as I did in the beginning. I believe it was the errors of the cancer center I have been going to. I am now in process of reaching out to the FDA (that fast track approved this and the company that makes it) to tell them of my permanent side effects and hoping they do an investigation into the cancer center that administered it.
I had my first infusion at noon and was supposed to wait until 3 pm to have an MRI. I apparently went home. My palliative care doctor I could hear calling me non-stop and hearing fear in her voice. She called me about 12 times saying please pick up if you are there. I did not even know I was home but I was on the floor and could not move. I had a hallucination I was in another apt. and people were trying to hurt me and it was very vivid and real to me. The hallucinations were terrifying. My doctor then called the police (who also brought along EMTs) to do a wellness check on me. They had to break down my door and they found me in the bathroom with "blunt head trauma" talking gibberish. They estimated I had been there for like over 4 hours.
I was then falling non-stop. Never sideways. I fell backwards and hit my head on my hardwood floor several times. Once I fell, I was never able to get up. Two more times, emergency EMTs had to come to my house. I had no idea what happened and then when I tried to call the cancer center, I was told I was NOT allowed to speak with my doctor or leave her a voicemail. I was very confused bc I had no memory (which are returning now) of all that occurred. I never even knew until a week and a half later that it was my palliative care doctor that called the police who broke down my door and brought me to hospital.
I am now using a walker and to my horror, I have lost all my hair and am now almost 100% bald (I was told minimal hair loss!). I look horrible and now I look very sick. I now have to get at home hospice. You have no idea how angry and upset I am that I went with this treatment.
But from what I am reading, I was NOT a candidate for this. It states patient "should have had chemotherapy previously (I never had chemo, I was diagnosed at stage iv) or the patient should have had surgery where the cancer was gone but then returned." I never had surgery and I have been in treatment for five years.
This treatment has destroyed the good quality of life I was having until the end. Now, everything is different. Like I said, I do NOT think it was the medication. It was the careless sloppiness of the cancer center and my onco. Oh yes, my feet and legs swelled up about five days after this treatment to the point I could not wear shoes. I live alone so not being able to leave my apt., bc I could not wear shoes made things very difficult. My depression over how I am now versus how I was (even though I had stage iv and all treatment was over) I had a good quality of life. I did not look sick at all and I was able to walk to stores and take public transportation and I was in NO pain. The cancer is now in my lungs, spine and 100% of my liver but I still felt well which was surprising to me. Now, I feel sick.
For me, it was and continues to be a horror. I am going to call the FDA again. Never just trust your onco, do a bit of research first when trying fast-tracked options.
Oh, and according to my onco's calculations, I should be dead already. Nobody knows but God.
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kearnan
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2 of us from the forum live in NYC and want to visit you or buy food/ supplies and bring it you. Whatever you want. We do not need to come inside. We can just come to the door. My cell is +1 (917) 414-2183
That is incredibly kind of you to reach out to me like that. It is nice and comforting to know that there are still people like you out there. I am finally able to get my feet into a pair of crocs I had (ugly so I had taken car service and went food shopping. It was scary though bc for a few days I had nothing in the house.
Before this, even though I was stage iv, I did not look sick. I was diagnosed at stage iv so I never did chemo and was even unaware that this was chemo. Having my long hair fall out by bunches every day was traumatic for me bc I was not expecting it. Using a walker now and I hate it but it beats falling on my head and not being able to get up.
My computer also went dead during this whole ordeal (when it rains, it pours) and I was not able to order online. Not having a computer starting a few days before I had my first infusion and now just got it fixed about a week ago made everything harder for me. Everything was on my computer and with the falling backwards on my head, I could not remember anything. I could not even add basic numbers for a few days. So I could not even order online.
I am NOW in process of starting to have at home hospice. I did not need that before the infusion, but I do need it now. I am not thrilled about having an aide come to my apt. bc my apt. is small and there is no privacy but I am told they can do shopping for me. That would help as I do not drive nor have any family or friends that even in live in Brooklyn anymore.
Thank you so much. I needed this to make me feel a bit better as I have been very depressed since this treatment. Your kindness and reaching out to me brought a smile to my face.
Thank you. I will keep your number. Tomorrow a nurse is coming from Calvary to assess me. Now, they will take over. I feel better knowing that for now I can continue to live in my apt., but when the time comes when it is apparent the end is near for me, I can then go into their hospice in Brooklyn, NY. Calvary is a hospital but has a hospice dept. also.
The hospice in Brooklyn is 25 rooms and each person gets their own room and bathroom. I was having issues bc they did not want to accept me bc I have no family or friends close by at nighttime if I need help. But I was able to convince them that there is at least 2 people that would be able to come and help me (even though not in Brooklyn, and they really could not.)
It is very hard when one has no family (not that I do not talk to them, I really do not have anybody) and as time as went on, some friends have slipped away. I have a friend in FL who I made the beneficiary of my small life insurance who can call from FL when my time comes and have some funeral parlor pick me up. Cheapest option is direct cremation. So the fact that I will be able to go to their hospice when I cannot take care of myself is a relief. There will be no delay since I am using their hospice. It is hard when one has to take care of these details themselves so I feel relief now that I will be going with Calvary.
Thank you again for your kindness and reaching out. It means alot.
Sorry to hear what has happened to you but glad to know you have good support in place. It is great to see your name hopefully you will receive everything you need going forward.
I’m so sorry I do not live closer so I could help you. I am praying for you from Alabama. I’m so thankful you have found a good place to give care. Big Hugs.❤️
Please let Tara visit you. You need someone to hug you and support you. It is time for everything to be about you. Accept the friendship Tara is offering you. It will be good for both of you. Many blessings, Hannah
welcome back!!! it's great to hear from you. we have been worrying and wondering. such great news that you are safe and will have in-home hospice visits for now.
despite all the trauma you have endured recently.... you sound like you are more accepting of your situation. and also sounds like you are content with your plans for hospice at Calvary when it is time. the place sounds really nice and lots of privacy. mostly you have a plan that you are in agreement with👍....always a good thing.
sorry for all you have been through. and sorry about the hair🙁
Yes, the good part of this nightmare is that you found a better hospice -- I know you were dreading Maimonides, and Calgary has a good reputation -- and that you are getting it at home.
The rest is a horror. It is so unfair the way this cancer and treatments can go.
The FDA does want to know about side effects, as does the manufacturer (or they should).
I started this as a reply to Carole, but it is really a reply to Kearnan.
It is not the case that you have no one to visit at night. At least, not to a certainty. Red Azalea is in Queens and I am in Manhattan and we both have cars.
kearnan, such a shock for you to go from well go very sick and with a walker…no hair must be cold in winter. Hope you have a warm tight fitting hat. The plan sound like a good one. And really glad you aren’t anxious about those details. It is not nice for you to have had to deal with them but you are back up and seem really in control. And glad you told your story so other women can consider the potential consequences. I am sure the makers of Erhertu are obligated to follow up on these events. Give them a call too if you have the strength. If they get a bunch of calls they will have to put a black box warning on the drug to warn about the falls etc. that sounds so awful!
Sorry to hear your story, but so appreciate you catching us up. My friend's mother and sister both were treated at Cavalry in the Bronx, and he said the best things about them. Glad you have a plan in place. And do complain about that drug. Just awful of what happened.
kearnan, I am so sorry this happened to you. I can’t even imagine the horror of what you’re going through. Does having chemo before include pill chemo? I’m on Xeloda now but have never had infusion chemo. I too was diagnosed de novo. I’ve never had surgery either. If this is true for me and I would not a candidate, you may have just saved me the same horror. I was thinking of this treatment next but will now have a long conversation. I am sending you hugs, which is just not enough.
Kernan, I know you have been through horrible things, but it is so good to hear from you! We were all concerned! Unbelievable you went through all this insanity. What does your onc say now to do? Why did this happen? Sending love and hugs!
Don't all the meds we take carry severe risks, even possibly death from side effects? My doc or the website on the medication give the percentage of people who get various side effects. If they are serious, then the medication is approved only if the percentage of people who have that side effect is small. It doesn't matter how small it is, though, if you are one of those people. There is always a list of severe side effects and a warning to contact your doctor ASAP if you have one of them (assuming you survive the side effect long enough to call:}!).
For Enhertu, they are now giving it to people with this new category of HER2 low, many of whom were previously categorized as HER2-. They do say it should be given only if previous chemo. Maybe it is restricted that way because of higher risk of this particular treatment and making sure other possible treatments have been tried.
Of the severe side effects on the packaging, one is reduced ability of the heart to pump blood. This can lead to loss of consciousness, dizziness, and swollen feet. Sounds like this is what happened to Kearnan. Could be why they wanted her to stay at the hospital for three hours. The patient is supposed to be monitored. It does say hair loss. She shouldn't have been told that was a minimal risk. It is common.
My doc ALWAYS minimizes the risks. She used to deny them even when I had them. She has learned over the years that I don't exaggerate, that I am pretty calm, and I always "do my research." So it is a little better.
enhertu has been suggested for me. I joined the Facebook group and have seen only one or two positive stories. The rest sound awful. I realize at some point chemo with harsh side effects is inevitable but I am not going to jump on the enhertu bandwagon.
Not sure what is next for me but I will push back hard on this one!
I had no idea it was so harsh, either. And they have been touting it.
On the other hand, I went to Fb with my first breast cancer, and for a friend with a rare, incurable disease. At some point, I realized that, at least in these two cases, the people writing in were those having the worst time. People with better outcomes had moved on.
So sorry that this happened to you. Now I will think twiceabout starting Enhertu. If you are having balance issues, you could ask for visits from a home physical therapist to wean yourself off the walker. Don't give up!
So sorry this happened doesn't begin to express my horror and sadness for what you have dealt with and are dealing with! Wishing you comfort and peace. 🌺♥️🌺
Thanks for letting us know your Se with this new drug. If vin does not help, that is what I am suppose to be taking next, as I am her2 low too. Scary man.
I was glad to see your name on a post and so sad to hear about what you’re going through. What an aweful aweful situation.
I’m glad you have supports in place and I also encourage you to reach out to the two ladies from NYC who have offered to help. Even if it’s just to chat on the phone. It’s never too late to make new friends ♥️
what a nightmare for you! Sending you love and light. I hope this is just a temporary setback and you will recover to your former strength. Much move to you❤️❤️❤️
Dear Kearnan - so good to hear from you although sad that you have been through so much. Things seem to be more on track now. I wish you nothing but the very best. Love and hugs. ❣️❣️❣️
I can’t even imagine the suffering you have endured…. sounds like a living nightmare. I am so sorry this has happened to you. We all have missed your posts.
And you already have an action plan in place to get the care and support you need. You are an amazingly strong woman. You have loving support from fellow warriors here too. I’m her2 low as well and had been hopeful about Enhertu for a future treatment
Dear Kearnan -- I so glad for you that you are connected with Calvary, the place in Brooklyn that you desired to go to. You will be fine, now. Please don't waste any effort on pursuing the doctor or the prescription. You need to concentrate your energy on taking positive steps and not waste any of your precious energy and thoughts on the negative. You are strong and have taken those positive steps that you outlined above. Please move on and try to get some pleasure out of what you have accomplished in getting your situation sorted out to your satisfaction. Well done, you!
My prayers are with you. I have completed 7 Enhertu treatments. Sadly, lost all my hair. I have some nausea and severe diarrhea. It has not been easy but my options are decreasing. So upset that you had such a severe experience. I have followed you for years. I think you will bounce back from this one. We are amazingly resilient people. I have had times after chemo when I could not walk to my bedroom without shortness of breath or intense weakness. As the drug leaves your body, you may feel much better. Things look bad right now but you have always been an inspiration.
I just wanted to cry after reading what all you have been through. Thank you for being honest and open, humble enough to share, that it opened my eyes as to how this thing can progress, yet we still feel good without any pain. It seems that the two would not co-exist. I pray in Jesus name that you are healed and rally 'round again. I know Jesus works miracles as I've had several in my life. Romans 10:9 says, "That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised Him from the dead, thou SHALT BE SAVED. The bible also says our life is but a vapor, and then we're gone. I believe in eternity in heaven. I believe Jesus is only way to heaven, as He said. Please don't take any chances with your soul, let Jesus in, He loves You! Our souls live on FOREVER and THAT eternity is the real life; that is what I believe. God bless you and heal us all in Jesus name, amen!
ps. thanks again for sharing; I will NEVER take Enhurtyou after reading what you have gone through and are going through! Thanks for all your nurse-based knowledge over the last few years, at least I think it is you that is the retired RN? If not, sorry to have confused you with someone else. My memory is horrible! <3
What an awful experience! The centre should be sued for negligence. No wonder they don't want to speak to you. Do you have a family member that could do this on your behalf?
It makes me wonder if the dosage was too high?? And you are right—that is pure sloppiness and they would be fearing a lawsuit.
I had first dose of enhertu 3 weeks ago, and 2nd dose yesterday. Tumor markers rose after first dose but only side effect was marked fatigue for about 9-10 days. Have petscan scheduled for early February.
It’s great to see you post again though your experience was truly horrible. Thank you for sharing . And as you say only God knows when it is our time to go. Be assured of my prayers for you.
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so I had taken car service and went food shopping. It was scary though bc for a few days I had nothing in the house. 
Enhertu infusion #2
Enhertu next treatment??
