De Novo Stage IV
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@snow-drop if you’re talking about AlabamaDee, I think that was her name, I believe, sadly, she passed away.
If you are on Facebook, there is an Orserdu/Elacestrant group there.1 -
I just started a new discussion because I have 14 bras to donate. I was asked to give them away after my friend's mom passed.
I posted on a few of my Facebook support groups, and received only a few replies.
However, did anyone hear of STOMP? It is a site for donating mastectomy supplies that are no longer needed!!!!!! And I was also told about a site that will take used meds. I had a bottle of Lynparza that I had let expire since I didn't know what to do with them.
Anyway, I joined STOMP "Sisters of the Traveling Mastectomy Products", and am so excited. I used to run a large BC support group locally and have gotten so many donations, but didn't know what to do with them.
Denise
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KBL thanks so much for the info about FB group, I think I might create a new FB account. really sad to learn about passing such a brilliant fighter who dedicated so much to bco, I wish I had known Alabama Dee sooner. I believe she deserves a tribute for her efforts in educating many like me on this site. how sad that someone just disappeared without any news, or at least I couldn't find anything on bco. Rest in peace wonderful Dee.
I am not going to exhaust this group with details about this particular treatment/ mutation. I was thinking of creating a new thread but I am still recovering from radiation therapy. I only have energy for about half the day and for the rest of the day I have no physical energy for activities and can't concentrated well, feel overwhelmed really quickly.
Jobbibo, how is the healing going? thinking of you.
Denny, such a good idea.
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@snow-drop I’m so sorry to hear about your recent struggles. That’s so many things you have to deal with. I’ll be thinking of you and hope you start to feel better. I’ve experienced the overwhelmed feeling quite a bit it’s such a pain to go through.
Thanks for checking in! I’m doing pretty well especially now that my drains are out. My skin never seems to like incisions and now that the surgical glue is coming off some of them are opening up a little bit which happened with my port incision before too. Surgeons are on a hopeful watch and wait approach, just keeping them clean and covered!
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@snow-drop I’m sorry you’re dealing with the awful fatigue. I hope the FB group helps.
@jobbibo That doesn’t sound like fun to have issues with your incisions. I hope they heal on their own.
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It's been a while since we had a post here.
I had mentioned in the past how I have developed an allergy to Heparin. So I have asked for a saline flush in my chest port.
But now, apparently, I also have a problem with just a saline flush. I had to get blood work done yesterday, and then developed a fever, low BP and restless leg-tremors.
I hope that everyone is doing well.
Denise
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@denny123 Goodness, you can’t catch a break. I’m so sorry. Now what?
I have stopped Orserdu after 9.5 months, as I’m having symptoms of cancer waking back up, so I will be starting Enhertu hopefully at my next doctor visit on August 19th. It’s my first infusion, other than Zometa. This is line number four. Let’s hope this one lasts a good, long while.
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@denny123 I’m so sorry to hear you’re having more issues with flushes. That’s so frustrating I really hope they can find a solution for you. Please keep us posted, thinking of you!
@kbl I’m sad to hear you’re moving on from Orserdu but I hope that you have amazing results with Enhertu! And I hope side effects are minimal / are able to be managed well. Enhertu is currently set up to be my second line when the time comes.
I hope everyone else is doing well! Not much to report over here. Feeling pretty much recovered from my surgeries, I have all my mobility in my arms back. Next scans will be August 12th, they sure come up quickly when you’re getting them every 9 weeks.1 -
Denny, do the nurses know that you developed an allergy to saline? what is the alternative?
KBL, I am so sorry to hear that, after Elacestrant keeping your TM down for a good while… how did that happened? how do you understand that those symptoms are related to cancer waking back up? I know you research well on the meds before you start a new med, I hope Enhertu works its magic for you. please post your update. honestly, recently I've been thinking a lot about Elcestrant, I started to woner if my previous MO was right about Elacestrant causing huge and uncontrollable progression, see what happened to me from bone only now I have 6 tumors in my liver.
Jobbibo, I am glad your recovery after surgery is going well and that your arms have gained full mobility.
a little update from me: perhaps the Guardant result didn't satisfy my MO, so he ordered Caris. apparently Caris lab messed up my liver tissue, the report said there was a technical failure. so after a long wait there is no information in the report. I am shocked, how could this fault even happen?? I had my scan yesterday, moved to 8 weeks instead of 12 weeks. when I thought the scan was complete, after a few seconds of pause the tech came and told me "one more image just to make sure we have everything" then they put me back in the tube, I am so worried about what the result gonna be…
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@jobbibo Thank you. 💕 I’m so glad you have mobility again. I’ll be thinking of you for your scans.
@snow-drop I’m also having symptoms that are common for me. I get the golf ball feeling in my throat and nausea. Tumor markers are also a very good indicator for me. I don’t rush. They went up for three months. I’m trying to get ahead of it getting to the point where I start losing weight.
I’m so sorry Caris screwed up. That’s so frustrating. Please keep us posted on your results. I know how anxiety producing they can be. Hugs.
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Just realized it was 11 years ago yesterday when I went to have an MRI that could have had a metastatic diagnosis if people knew more about lobular at the time instead of six years with no treatment, but I look back and honestly feel I would probably no longer be here if they had. Why do I say that, you ask? We’ll, I would have been on multiple treatments since 2013, and Ibrance, Orserdu, and now my next line I’ll be starting this month, Enhertu, were not even in existence or FDA approved yet. My options would have been very limited, and I am just starting my fourth line. If I was treated from 2013, I would be on my seventh, eighth, ninth, who knows what line, if I was even here. I choose to let go of the fact that they royally screwed up because I think in the long run, it let me live so much longer because of the new drug lines being put out all the time.
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@seeq Thank you. Thats a great way to put it.
@AJ I’ve missed you, Anita. Hopefully we’ll see you Monday. I think the reason I have stayed more calm about changing is because I haven’t had horrific things happen as some have. I am hoping to not have too many side effects from Enhertu. This is a first for me, so I am a little nervous. I won’t lie.
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Yay! I survived! My nurse compared the saline port flushing tube to the saline pre-med that I get and it is the same. I have no idea why I had a bad reaction 3 weeks ago, except that she told me to take my Tylenol an hour earlier than I usually do.
Hopefully all will go well from now on. I had gotten my CBC next door to the chemo center, but their saline must have had preservatives since it is under a different health system. I am going to call of Monday to see if I can get my CBC at my actual chemo center, which I always used to do until they started to remodel the place.
@kbl I am sorry that you have to change treatments but I have heard a lot of good things about Enhertu.
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KBL, after being in the C world, we understand our body's signals and a need for a change in medication. I am glad you picked up on the symptoms soon before progression actually happened and that your MO is onboard to change the treatment.
I've just understood that the first scan, 3 months after starting Elacestrant, showed progression in my liver, but unfortunately the radiologist did not bother to add it in the report. It showed numerous lesions observed in my liver on top of 3 new solid tumors and the other 3 which grew rapidly. I don't know if they internally informed my MO, or if my MO just wanted to ignore this progression and keep me on this drug for his research purpose. well… both are wrong… I am frustrated, I called it dishonesty…
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@snow-drop I’m so sorry. I would be furious. How the hell do they keep that from you? So what now?
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@snow-drop - it sound incompetent or unethical, at best, and possibly illegal. I'd insist on an explanation.
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apparently, the scan results satisfied my MO enough to keep me on the course, but move to a 6 week scan from 8 weeks. I feel like we know a volcano is going to erupt…
as for hidden information, I talked with the radiologist but he was unable to disclose when it was first observed. I think I'll move to the liver thread, not to exhaust this thread.
hugs
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@snow-drop It's good news that the scan was okay. When I was dx'd in 2002, 3 biopsies missed my liver "spot".
Since I went through liver met treatment, I hope that you stop in to keep us updated!
Denise
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@kbl What a great way to look at things in regards to starting treatment later on, have to find the silver linings when we can. Sending all the good vibes as you start Enhertu!
@denny123 So so glad to hear you didn’t have any issues last time! I hope you’re able to get your CBC at your chemo center and that there’ll be no more issues.@snow-drop Wow I’m so incredibly sorry they didn’t disclose this to you. I agree with others that this sounds unethical I’m so upset for you. Would love to keep hearing updates don’t worry about exhausting this thread at all. I’m glad at the very least they’re moving scans up, I’ll be thinking of
My scans results were good, stable mable over here. Hope everyone else is doing well, thinking of you all always!
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Just wanted to give everyone an update on my wife's condition. She had an FDG PET/CT a week or so ago. I know those are not ideal when one has ILC, but it's what they offer alternatively with bone density/pex scan.
At any rate, her results hit her portal today and the good news is that for everywhere she has/had visible cancer it mostly says "grossly unremarkable". For bones it says, "No new acute or suspicious osseous lesions. Mild degenerative changes of spine." Overall impression reads, "No PET/CT evidence of recurrent or metastatic disease." So that's all good. Coupled with her increasingly falling tumor markers (15-3 and 27-29) which, while not quite back within normal range, are just above them; it's consistent across the board.
The mildly concerning language in the report concerns her heart. "Nonfocal intense FDG uptake within myocardium predominantly involving lateral and inferior walls with SUV max of 15.0, but no evident anatomic correlation on CT. Note that anatomic evaluation limited without intravenous contrast."
So not sure if this is just normal within spec FDG uptake in the heart muscle or something else (presumably non-cancer related) to worry about. Anyone else had this situation?
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Denny, we understand eachother more than our closest ones. when you wrote "your scan was ok" we both know what that means. I'll surely update here with good news if I have any. I meant that I'll move my questions about progression to the liver thread but I won't be leaving here for sure ❤️
KBL, seeq, Jobbibo thanks for supportive words. unfortunately this happens quite often in our health system. I am very curios and ask tons of questions, if I wasn't I wouldn't have discovered this missing information. I think I should get an Olympic medal for being the self-advocate of the year!
Bighubs, as much as I prefer PET over scans with contrast, but PET can pick up inflammation and bruises as uptake. from what I see, the overall report is good and I hope your wife's MO can explain it better.
KBL, sending positive vibes for you, Enhertu works for you, many patients start from 80% dose to manage se.
Jobbibo, great news congratulations :)
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@jobbibo Great news!
@bighubs I recently had a questionable area in my right lung with a rather high SUV that showed up on my CT scan and PET scan. My onc was worried and sent me to a thoracic surgeon who wanted to wait for another CT scan before doing a biopsy. And that was a good thing, since the spot is now almost gone. Great news otherwise for her!
@snow-drop I'm glad that you will continue to inform us about your progress. There are a lot of treatments that work very well on liver mets, so your info can help all of us.
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@jobbibo Thank you.
@bighubs Great to hear your wife is stable. I don’t have an answer for you on what the meaning is from the CT. I would assume they will suggest she see a cardiologist. I know, just what we all want, to add another doctor to the mix. And they take forever to get into sometimes. Please keep us posted.
@snow-drop Sending hugs, and thank you. I asked my doc if we could start lower dose, but I don’t think he likes that idea.
I have not had insurance approval yet, so I doubt the infusion will happen Monday. I’m pretty upset. My tumor markers continue to rise, and the insurance said they needed my CT results. Well, nothing ever shows on a CT, so I’m suspecting they may deny the med due to the CT stating no areas seen. I know for a fact my cancer has woken back up. I don’t feel good, I have a golf ball in my throat, which is a classic sign for me that my stomach mets are progressing, I’m having intermittent pain around where my right ovary is, I only had a partial hysterectomy, and the tumor marker for that area is the one that’s rising the fastest, up 70 points in just a few months. I was trying to get ahead of things getting worse. Let’s hope the infusion can start before next Friday. I’ll be off meds three weeks on Sunday. They don’t make it easy.
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@kbl I am so sorry that you are feeling poorly, and it's infuriating that you have to wait for insurance to approve a medicine you need. I hope you can find some calm and happiness somewhere despite all.
@bighubs I hope your wife's heart is fine. I know your own heart is big and loving.
@snow-drop This is all very strange and a lesson that we need to be on top of our own care, even if we are not even the ones trained to do this!
@jobbibo Yay good scans.
My tumor markers are all steadily dropping within normal range now. I thought I was supposed to have scans every three months, but when I spoke to the onc's office last time, they said, Oh, three or four is fine. So now it's four, even though I've not been in treatment a full year yet. I guess this is good news. The bone mets feel mysterious to me. I feel strong after a good summer and finally recovering from the effects of ACT chemo, which are no picnic, especially the wretched fatigue. So back to the real picnics on beautiful autumn days.
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@tougholdcrow Thank you. No results on my CT, although the girl said 24-48 hours. Why do they lie?
@AJ Thank you. 💕
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@tougholdcrow I should have said how happy I am that your tumor markers are down. I’m sorry I didn’t say that earlier.
Went to the doctor yesterday, and as I thought, I couldn’t get treatment. I got the CT results on Saturday. A lot of good that did. We set the infusion for tomorrow and hoped for the best. I got a call halfway home from the insurance company that they approved treatment. It happened really quickly but made me feel better. I will keep you posted how I do with my first infusion. The only other infusion I’ve had is Zometa, so going every three weeks will be yucky. Getting to take a pill was so much better.
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