De Novo Stage IV
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@kbl - It hurts my heart that you've been suffering so. Do you remember (Dr) Donna talking about the Relief Band for nausea? It's FDA approved and could be worth the investment if the antinausea meds are problematic. And you've tried the ginger tea, right? I hope you can get things tuned in to work for you. Sending love and gentle hugs.
Catherine
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@kbl Carol from Weds group swore by Enterade during her nausea battle with Enhertu. It's a little expensive, but they offer a reimbursement program!
Hoping you find some relief soon. Gentle hugs!
—The Mods
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@kbl LOL. Nice to see that you are doing okay now. I like Emetrol for nausea, which is OTC.
Had my CT scan today and had to take a 2 hour nap when I got home. I hate that I am having reactions to every procedure now. Had an interesting conversation with the CT scan techs after I told them about my problems with saline and heparin flushes into my port. CT scan contrast doesn't give me the very low BP and fever. But the tech said that she heats up the saline that has to be used to clear my vein from the contract.
So when I see my onc on Wed, I am going to ask about having the saline heated when the nurse flushes my port after my Herceptin infusion.
BTW, I don't have a power port since mine is 22 years old. So I can't have the contrast run through my chest port.
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@moderators Thank you.
@denny123 I hope warming it up will work for you. That is amazing that you’ve had your port for the whole time.
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Denny, sorry about the CT. I had a problem with mine too. A few months ago, my face and hands got hot too but this time (2 weeks ago) I also had rapid heart rate and a BP drop to 80/30! My onc’s PA says I’m developing an allergy to the iodine.
Hello to everyone, I read but don’t post here as much as I intend to.
KBL, see you on the Monday zoom 🙂
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@kbl yes, my nurses are amazed that my port has lasted so long. And they always say that it is a funny, little port.
@illimae Wow-that is really low! I have dealt with a low BP of about 70/50 after I eat a normal meal, for over 2 years. I finally figured out that I have post-prandial hypo-tension. I now have to eat 5 small meals a day to keep my BP in a normal range. That means that after I eat, the blood rushes to digest the food and leaves my heart area, so the pressure tanks.
Otherwise, my BP can go as high as 185/95 for no reason. So I take meds for that and I do see a cardiologist. But my heart checks out okay.
I wonder if you can get PET scans if you can't get CT's?
I have had CT's for almost 23 years so I hope that I don't get that problem.
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Denny, I could get a PET but they can also give me a med before the CT to prevent a reaction to the iodine, so we’ll try that next time and see how it goes. I am also on low dose Carvidilol for heart protection due to anti HER2 meds after an EF drop years ago from a Herceptin biosimilar. My vitals are always stable, only changing drastically 3 times, each time due to a big reaction.
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Denny, yes, TM’s are done with pre chemo bloodwork and with quarterly scans and stay in the normal range. I had a single bone met at diagnosis and nothing else in my body since then (2016) but a few brain mets do pop up occasionally.
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For your reading pleasure—-I love to be able to see my CT scan results before my oncologist appt.
Had to look up a few terms. I think this is good….. lol. My onc usually tells me that it isn't as bad as it sounds.
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@harrow and @snow-drop: Thank you for the condolences. Never did I imagine my dad and I would be diagnosed with stage 4 cancer, 3 months apart. I never really talked much about my cancer with him, or with a lot of folks in general. I guess it's just who I am.
In trying to look back at some of these posts, it looks like we all seem to be dealing with something. Gosh, I wonder how did we get in this mess?? I guess it's pointless to think this way, but being De Novo, we never had a chance for a cure. I have a lot of unsettled emotions, it’s not about acceptance but more bewildered.
Ok, Back to distraction, football, why not, LOL…
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I’m finally coming out the other side of the Enhertu side effects and am able to function a little better. My head is clear, and my decision to stop treatment is still my desire, so I know it’s the right decision for me. I look forward to having some good days ahead without the constant of feeling fatigue and nausea, at least until it rears its ugly head in my stomach and possibly colon. I will not think about when that will happen and enjoy every single day as it comes.
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@kbl you are in my thoughts
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@lacombattante Thank you. 💕
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Kbl - So very sorry to learn that you are in this situation. I've always so appreciated your comments and presence here. My heart is with you. Hugs and "positive vibes".
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@denny123 Thank you. I actually think once I get the Enhertu out of my system, I should start feeling better and have many months of no treatment to look forward to. I am on Day 15 post-Enhertu and am finally feeling a little better and am able to get some things done. I still have nausea but am not in need of anti nausea med. That should hopefully disappear soon.
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@threetree Thank you. I hope to be here for some time to come. I am so very fortunate to have the opportunity to make this choice for myself. 💕
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@kbl, I am thinking of you. I enjoy your very insightful comments. I find that when I have to make a decision that is difficult, if I have made the right one, I feel at peace - as if a weight has been lifted from my shoulders. It is almost a physical response and difficult to put into words. You have obviously thought hard and considered the options available under very difficult circumstances. Making our health decisions is very personal. My very best thoughts are beaming to you and in your pocket with support.
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I saw my oncologist today and will stay on Herceptin and Xeloda. He said that my enlarged spleen, fatty liver, cirrhosis and varices are all because of my 22 1/2+ years of chemo.
I imagine that if my liver was really bad, that he would send me to a liver specialist.
Aparently all I can do is to lose some more weight…he says maybe I could lose 5-10 pounds. And I can improve my diet too.
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Kris ❤️ I understand and I can relate. Believe me I know how hard side effects can mentally, emotionally and physically drain someone. and I know you didn't come to this decision easily. but selfishly I want you to take a few weeks break and then consider looking into other options, there are several SERDs and SERMs available that have relatively fewer side effects than enhertu. I know it might be inappropriate for me to suggest this but because you are important to me and to this community I had to ask. I must admit I'm still nauseous from Elacestrant which makes me vomiting every other day, dealing with unnecessary fatigue and feeling overwhelmed etc. every time the nausea is overtaking me I think about DWD…
my scan report isn't great, but I expected it, since I've been feeling something is not right. in just 8 weeks, one of the 6 liver tumors grown 1cm, and a few others have mildly grown, and TMs are on the rise. I sent a message to my MO's office, he should've called me but it's bees 2 days and no response yet. he doesn't seem fully committed to my case and I see it. I've requested a longer meeting for next week, hoping I'll have enough time to discuss the progression, otherwise it'll be the same he'll come into the exam room without reading the reports and quickly rush out, I don't see any after visit notes since May…
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Dear KBL, you are in our thoughts… every decision is very personal and should be respected. Hugs, Saulius
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@malleemiss251 I appreciate your words very much. Thank you.
@denny123 I’m really glad you get to stay on your treatment. Now if warming up the saline halos, even better. I hope the other issues can be resolved as well.
@snow-drop I appreciate your suggestions. I have no idea what my doc will say, but who knows, maybe I will have a good long while without meds and feel better. I don’t feel I’m close, and I really am looking forward to having the break.
I am really sorry Orserdu is causing such issues. I hope they can be resolved. And your doctor makes me mad and sad for you. You deserve better care.@bsandra Thank you, Saulius. 💕 Hugs back atcha.
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KBL, thank you so much, big hug.
Denny, congratulation on good result!
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@snow-drop Big hugs right back at you.
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@kbl Only you can know if it’s the right decision for you. I’m sure it wasn’t an easy decision to come to and I admire your courage to share it with us. I’m keeping you and your family in my thoughts.
@snow-drop I’m sorry your scan results weren’t better than you had expected. I hope your MO gives you the time and courtesy you deserve to discuss everything you want to talk about.
@denny123 glad to hear you get to continue on your current line of treatment! I agree that if your doctor was really that concerned about your liver, you would be referred. I also have a bit of a fatty liver. No one seems concerned about that for me either.
Hello to everyone else! I hope you’re all doing ok.
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