De Novo Stage IV
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No apologies needed, @kbl , and I hope the infusions are not too punishing. I did ACT chemo infusions when they thought I was IIb, and I got through it. I grew very fond of the nurses who do the infusions. They are special people. If they don't offer you a warm blanket, ask for one. I found that very comforting.
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@tougholdcrow Thank you. I will definitely ask for the blanket. I’ll have to have it on and kick it off for the numerous hot flashes I get but then get cold and hot and cold. lol. I have no body temperature regulation. I’m going to try to sleep through. Lol.
I’m so glad you did well with ACT chemo. Thank you for letting me know.
Hugs
Kris
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@tougholdcrow, that is such good news about the decrease in marker levels. The news helped make a good day even better.💓
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So this is never-ending….I thought that a saline port flush would be okay. But yesterday I had to get fasting bloodwork and had the non-preservative saline flush. When I arrived home, I ate half of a sandwich and my BP went down to 59/45! My vision was all shadowy, I was shaking and chilled and all I could do was sit in my recliner until my BP went up a bit. Then I went to bed with 3 blankets since I was freezing. Woke up 2 hours later with 103 fever.
My bad for eating but I was hungry! I do have post-prandial hypo-tension which causes my BP to tank after I eat. So I guess that I did a double-whammy on my BP.
So even a saline flush is bad for me. Out of options so I will just have to live with it. (and not eat when I get home).
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denny, so sorry this happened after getting bloodwork. It has to be scary. My heart goes out to you.
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Thanks ladies. I have had this weird stuff going on for 2 years and now it is worse. I do plan to have my next bloodwork in 3 weeks in my hand vein. I have bilateral lymphedema, so I have to be careful.
I know that it could be worse since some ladies are so sick after chemo.
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@denny123 I’m in your pocket to send you support (I think that’s how the expression goes?).
I’m a newbie to this and just getting used to the one-step forward, one-step back hokey-pokey… I had kisqali doses gradually reduced (I’d started it in January). The first-line treatment might not be so effective now. 15-3 results were climbing.Now I had CT scan results pop up in the patient portal today, and it looks like bone lesions are stable but liver and breast are more active. I hear the MO’s perspective in two weeks… so I’m wondering if there will be a med change. Already. I’d been hoping to stay on kisqali longer. But maybe something will be added to target the liver? I have no clue yet.
For everyone who has cycled through several meds… I’m starting to feel ya.
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Just realized I need to correct my signature… diagnosis December 2023, medications started January 2024. Argh.
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doodler, that’s one of the best descriptions I’ve heard: “the one-step forward, one-step back hokey-pokey”.
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@seeq Thsnk you so much. It has been okay. The side effects so far have been my legs feeling like I put weights on them, odd, I know, but that was gone by midafternoon. My nose was running pretty heavily in the morning, could have been just allergies, because after Claritin, it stopped after lunch. And the nausea came once the anti nausea they gave me wore off, but I took an Olanzapine at 2 and ate two fajitas at dinner, when I can normally only eat one. Lol. The Olanzapine sleepiness kicked in about 6:30, and I was done, falling asleep on the couch. I went to bed at 7. I’m up now and still in bed, and as of this moment, I don’t feel bad. My fingers are crossed.
Thank you for thinking of me.
Hugs 💕
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Kris,
I second seeq's thoughts.
Mary Jane
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KBL, I am thinking of you, glad that despite all the difficulties with insurance you've started Enhertu. I hope you get the best response with this med. thanks for sharing the SEs. Enhertu might be one of my next line.
Denny, I'm so sorry that happened to you. I usually keep a candy or dried figs in my bag, take after blood draws. some people put salt on tongue when the BP drops rapidly.
Doodler, welcome to this thread. I am sorry you found yourself here though.
I have liver biopsy scheduled on Monday, I hope the result brings at least a little win against this stupid disease for me….
Harrow, how are you?
Tougholdcrow, congrats on good results.
Hugs
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@snow-drop Thank you. Please keep us posted on how your biopsy goes. I’ll be thinking of you. Hugs.
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Good luck with the biopsy, @snow-drop .
@doodler Two weeks is a long time to wait, but I hope your MO gives you an excellent course of action.
@kbl and @denny I hope your recovery from these treatments was quick and you are back to living this beautiful life again.
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Latest on my BP problem…. I did heed the advice of Gatorade or salty chips after my port flush. I had my Herceptin yesterday and did all of the things that I have learned to stay warm during the infusion to offset the extreme chills.
I asked my nurse about the salt and power drinks and she agreed and gave me 2 snack bags of chips, and I had Gatorade with me. When I arrived home my BP was 171/95, which is ridiculous.
I was very tired but it took a long time to get to sleep. When I woke up, my BP was 107/72 and I had a fever of 101. So at least I didn't have the very low BP, but might cut back to one bag of chips.
@doodler Good luck and I hope that the increase was just a temporary thing. I have had many of those questionable rises that turned out to be just from a respiratory infection or something else.
@snow-drop I hope that your liver biopsy goes okay and the results are good.
Best of luck to everyone and thanks for the input!
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@tougholdcrow Thank you. I’m only four days on the new treatment so far and sleeping a lot, but I’m thinking it’s from the anti nausea pill more so than Enhertu. I’m not going to take them any longer. They knock me the heck out.
@denny123 Glad the blood pressure didn’t go low again. Hopefully with one less bag of chips, you will have your solution.
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@kbl Hopefully you won't have any SE's with it.
Thanks for the reply. About 2 years ago, when I started to have all kinds of weird problems, my sodium was way too low. A doctor told me to eat potato chips or pickles every day to raise my sodium. Now my sodium is normal, but soon it might be too high. LOL.
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Dear denny123, I think you should definitely start Hylecta. It could probably solve these terrible problemas that you face with intravenous infusion:/ Saulius
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@kbl hang in there! what are the SE's?
@Saulius I had asked about the injection, but it was vetoed since an infusion was preferable. I no longer have the shaking and chills during my Herceptin infusion since I take steps to stay warm.
My BP problem occurs with my port flushes. Thanks for the input.
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@denny123 mostly nausea. I am now taking a promethazine at bedtime. Doesn’t affect me like olanzapine. I am dealing with it during the day. The first day after infusion, my legs felt weighted down. Today I walked two miles on my treadmill. I haven’t been able to do that in forever. It’s hard to get on when you’re nauseous, but it may help in the long run. I have to say on day 6, so far it’s not too bad. I will take it and hope they’re all like this and it works, but I know each infusion can be different.
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@denny123 I remember Emetrol. I used to use it a long time ago. I took two promethazine today. They do help. Now, I should think about mashed potatoes and buttered noodles. I could probably live on that. Yum. My premeds are 10mg steroid, one short acting anti nausea and one that lasts a few days. I can’t believe tomorrow will be day 7 already. It’s been a lot better so far than I expected.
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@snow-drop I’m really sorry to hear that your doctors withheld such important information from you. I can’t even imagine. How can they get away with that? Or feel ok about it? It’s mind boggling to me. How did the biopsy go? Please keep us posted. I’m doing alright, thank you for asking 😊
@jobbibo hooray for stable scans! I hope it continues that way for a long time for you! I’m glad you’re recovering well.
@bighubs I don’t have any insight as to the details mentioned in your wife’s report but great news on the no PET/CT evidence of recurrent or metastatic disease! May that continue for her! Please let us know what the doctors say about her heart.
@tougholdcrow great to hear all the tumour markers are within normal range now. Let’s keep it that way!
@denny123 I’m sorry your issues are continuing. That must be so incredibly frustrating, especially now since you’re out of options for address the issue. Ugh! That really sucks. I do like the chips and Gatorade diet though!
@doodler I’m glad the bone mets look stable and I’m sorry that your results show more activity in the liver and breast. How did your follow up with your MO go?
@kbl how are you feeling? I hope the side effects have started to get a bit better each time. I’m glad to hear it’s better than you were expecting.
Sorry if I missed anyone! I hope you’re all able to enjoy whatever amount of summer we have left. Thinking of you all!
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Hi @harrow — The follow up appointment with the oncologist is tomorrow afternoon. It'll be a phone appointment. I'm curious, to say the least, how the plan is going to change. Not looking forward to adjusting to new meds… but then again, maybe other treatments will be suggested, and I don't know much about what would be done for the liver. Maybe a liver biopsy will be done… or not. I'll know more tomorrow evening.
During the long weekend, I needed to take some time to be alone and sort of process everything that's happening. I felt down for a bit, but I've bounced back now and feel like I'm in full "cancer warrior" mode. This is just my first time having a medication stop working, and my first switch to a different one. I know that there will be much more of the same ahead of me. But I'm still in a good place right now, relatively speaking. Grateful for that.
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