Just a quick vent - but first know that I am blessed and grateful for my life and for all of you and for the availability of all these meds that keep us going.
So here's the whining part and no response required just putting it out there for "future me's"
Next week I will have what I suspect will be my last Enhertu infusion because it hasn't been showing signs of working on my Tumor Markers and I will be getting a scan the following week to confirm that assumption.
This drug, according to my NP, causes increase in stomach acid production. She recommended Pantaprozole and pepcid - I did that religiously for a few weeks, but here's the problem..I only vomit when my stomach is empty (which some would say is not so terrible) so why would I take all this acid reducing medicine? I took an anti nausea pill yesterday and threw up an hour later. I guess I have to eat constantly and that's not exactly what I want to do or feel like doing. It's a super frustrating situation especially when I do vomit it's horrific - my nose bleeds and I break blood vessels around my eyes. it scare the heck out of my husband. My final whine about this is that we are going on a trip next week that we planned around side effects so there is a 50% chance this vomit thing will occur on the plane ride back - that is not a pleasant thought. I even spoke to a flight attendant friend to ask what I should tell the staff. BLGHHHHHH.
Anywho, thanks for "listening" to my vomit story on USA eating day, I guess I will start eating now. I guess if my scan is good I will have to suck it up and rescind my thought on this med.
Allison
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Iwasborntodothis
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I so understand your frustration, but mine is with a different drug. And yes. We are “lucky’ And should feel “Grateful” shouldn’t we? But I am so over feeling like I do too. So I’m with you Sista! So sorry your’s is about gut stuff. How awful for you. X
Thanks! I am sooo over this drug. The empty stomach theory did not work yesterday with the lovely meal my hubby prepared so that was even more frustrating. UGH!
my heart goes out to you! My big problem on Enhertu is sudden diarrhea. Now I have a prescription that helps a lot. I worry about planes. It must be so difficult to have an upset stomach so often. Please tell me the next med you go on. I keep thinking that my next drug is full blown chemotherapy.
I had issues too with nausa meds. I eat banana and drink milk prior to meds. Never have had issues since. Enhertu did not work at all for me neither did eribulin. Although, I am her2 low, I am still neg with no amplification. That was as of Feb. Doing mgs on Monday. Go on trip and try to enjoy.
Thanks - I will try the bananas - I drink tons of milk. Chewing gum helps sometimes. I just get the almost no warning need to vomit when my stomach is empty. I am also her2low. Trying not to worry about the plane ride - my flight attendant friend says they deal with much worse on a regular basis so dont worry.
That is not fun at all. I feel for you. Vomiting on an empty stomach is almost worst for me as there is nothing to eject! But I fortunately have not had issues like that on Enhertu. (Just had my #4 this week). Sometimes if I let myself get too hungry that actually starts to feel like nauseau, so then I try to nibble a protein snack, which seems to really help. I was ravenous for a few days in a row last week, despite eating good meals! Anyway, I hope you manage to travel without any incidents. And that your scans show improvement despite all the woes of the drugs
Thank you. The nausea has gotten increasingly worse first it was just week two but now it is stretching into week 3. I think I have had 5 rounds and the 6th is this Monday. Flight is Tuesday because I am still feeling good for a week after infusion. I am trying the nibbling thing but I forget in the afternoons and thats when the problems happen - between 3 and 5 PM. I have been able to figure out a routine for every other thing I've been on but this one is too unpredictable.
Update. Well back from vacation - sprained my ankle day one and had some spectacular skin injuries from the aggregate on the path - so much so that I was advised to stay out of the ocean due to risk of infection....ummm the ocean is why we were there. But we made due, They upgraded our room to something movie star fabulous so we didnt suffer. First day back was scan - PET - and although my cancer is non-detect in my lungs and "healing" in my bones and you can't even really find my original tumors, it has all gone to my liver. So, apparently Enhertu hates me too. I will start Eribulin on the 23rd...and that is currently my last available option. Trying to stay positive and will let you all know how Eribulin goes.
Hi Allison. You photo brought back wonderful memories for me as me and hubby were there for 15 days and returned back home October 28th. We had the most wonderful time so thank you for bringing it back in mind. Great that you didn't experience the n&v that you feared about on the plane but sorry that you sprained your ankle on the first day there. Things happen even to healthy people I know but it is frustrating. I always try and look at the positive from your scans and those gains were certainly seen in the lungs and bones but I know increase in the liver always freaks us out. Eribulin can be a very effective drug and most studies have been done in the heavily pre-treated MBC patients category. I'll include a link that hopefully gives you some hope. In the link they sometimes used Eribulin as monotherapy but they also saw great results when they combined it with various agents...for the Hormone positive HER2- people those were anti-angiogenic drugs(Bevacizumab (Avastin), Anlotinib (AL3818) is a targeted therapy drug that treats cancer by blocking the signaling pathways of various receptors and another agent that was used was Apatinib (Rivoceranib). Anyway something to potentially discuss with your oncologist starting with Eribulin monotherapy and then adding later perhaps.
I am happy to hear you are staying positive, I believe it really helps and if it were me I would be also looking and getting your team to look for potential clinical trials. I will be thinking of you as you start your first cycle on December 23th and usually it will be then given on Day 8 and is part of a 21 day cycle. Generally side effect wise it is well tolerated when the appropriate pre-meds are given which you are used to. Take care and I'm sure I can say we will all be rooting for you.
Thank you as always for your amazing response. I do have hope and we did enjoy a truly relaxing vacation. I am very grateful and blessed for sure. These articles are just what we needed prior to the appointment.
Allison I have been thinking of you and found a post where you listed what treatments you have taken so far. Then I found this posted on your American Cancer society website. I know you have taken most of the newer drugs but It seems to me that you after Eribulin you may still have several other categories of older cancer drugs that you haven't taken?
Chemo drugs for breast cancer that has spread (metastatic breast cancer)
Taxanes: Paclitaxel (Taxol), docetaxel (Taxotere), and albumin-bound paclitaxel (Abraxane)
Ixabepilone (Ixempra)
Eribulin (Halaven)
Anthracyclines: Doxorubicin (Adriamycin), liposomal doxorubicin (Doxil), and epirubicin (Ellence)
Thank you this is very helpful as my appoitment is Moday. I am approved for Eribulin/Havalin ((sp?). I am also going to ask about SIRT for my liver. They ran another Gaurdiant on my blood and that report was just received showing at least ten trials, five in AZ
I am feeling better as the Enhertu side effects wear off so my head is clearer on the future.
Glad you were at least able to getaway. Had eribulin this time last year. With my DX, it too did not work. On combo treatment now and finished 1st cycle day 1 & 8. Plus had another test on biopsy for a particular mutation for a trial, perhaps. 2nd cycle in Jan because I wanted to be on something to lessen the chance of more progression, because really haven't had anything since Sept., because doxil multiplied my markers with just 2 cycles. Horrible reaction after 1st. Surely there has got to be more options for you. I have said a little diddy to the one above praying eribulin works miracles for you Allison.
I dont think my doc has brought that up. There is another one or two that came up from Gardient(sp?) test. I started Eribulin Monday - only one pre-med and ten minute infusion. Two weeks on one week off. We'll see how my labs look next Monday.
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Enhertu it is.
First scan after Enhertu
Enhertu 
