De Novo Stage IV
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Thank you, NineTwelve and Tinkerbell. I appreciate you both.
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KBL, good luck with the scans, please report back. I missed your daughter’s episode, I am sure she was great and you enjoyed seeing her.
Candy you are in my thoughts, hugs to you sweet lady.
Mae good to see your post, I hope Ida calms down and won’t damage much, won’t turn around Texas, and goes AWAY. It is scary even watching it on tv. Stay safe.0 -
My condolences to Candy on the death of her sister. Both will be in my prayers
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Thank you, Snow-Drop. She was great. I was very proud.
Thank you, Olma, for remembering Candy and her sister here. It’s so sad.
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I'm so very sorry to hear about your sister's passing Candy. You have been such a kind and giving sister to her.
Good luck with the CT scan, KBL. I hope it reveals something helpful.
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prairiesea, thank you so much. I’ll report back.
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hope it's going well for you today KBL - just scheduled my PET for Friday - hoping my goodfriend NED hasn't dumped me yet 😁
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Olma, I just started drinking the nasty chalky stuff. Two bottles is just too much to ask. I hate it and groan after each sip. Thank you so much.
I will be in your pocket for Friday. NED is a wonderful place to be, and I pray you stay there.
Hugs.
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Thank you!!
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So my CT results are in. I did not notice this in my April emergency room CT, but I noticed it today. The CT scan is picking up gastric thickening. It hadn’t ever done that before. I have been having trouble eating again and have been losing weight. I have been thinking things are worsening, but my testing doesn’t ever really help. I’m so torn on whether to move to the next line when I don’t have definite proof it’s progressing in my stomach or anywhere else. I don’t trust any imaging due to lobular on whether it’s moved to my liver or peritoneum or anywhere else. Ackkkk.
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KBL, could the thickening be caused by something else, maybe a medication SE or inflammation? Tough spot to be in not getting any solid info, I’m sorry. Any chance another oncologist with some partispecialty could advise?
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Thank you, Mae. I have doubts it's anything but the mets in my stomach, since I'm having the exact same eating issues that I had for five months before I was diagnosed. I literally can feel the hardness in my stomach, even before I read about the issue today. I told my husband to feel my stomach this morning, or at least where I think my stomach is. Lol. He could feel what I was talking about. I lost 17 pounds the first time around. I've lost five in the last month and a half and can't eat much at all. Poor guy keeps begging me to eat. I am really trying. I get totally full after a few bites. My next onc appointment is the 13th. I'm going to really have a good conversation and get them to tell me what to do next.
There are no lobular specialists in my area. Lobular is so freaking frustrating. It loves to hide.
My radiologist that I've got a connection with said looking at a CT and looking at my MRIs, he would think it's two totally different people.
The other thing I'm flummoxed about is when I went to the emergency room in April, the. radiologist thought I had hydronephrosis of both kidneys. I went and had extensive testing on my kidneys. Everything was fine. I asked him about it. He said what he felt happened was my bladder was full, and it distorted the way my kidneys looked.
Today's radiologist wrote in her report “stable mild hydronephrosis." I was like WTF? I went pee right before the test so my bladder would not be distorted. Doesn't that seem like a CYA moment if you ever saw one?
My tumor markers are another one of the only things that show my cancer, and they've been creeping up for a few months but slightly. I don’t panic about them because they've bounced around a few points since the beginning, but they have not ever come down to normal and are still in the 100s.
One more thing. Every report says I'm constipated. It doesn't matter if I go once a week or every single day. The report still says I'm constipated. I'm shaking my head. I've been taking Miralax regularly, and I certainly do not feel constipated, and I know what it feels like to be because it's painful when I can't go. Ugh.0 -
Hello de novo friends, sorry if you've already seen this & this is a repeat but it is important for sharing with newly diagnosed: Even more evidence in support of aggressive surgical treatment for de novo dx.
https://onlinelibrary.wiley.com/doi/10.1002/jso.26...
Survival benefit of a combined surgical approach in patients with metastatic breast cancer - Aug 26, 2021
"Patients with metastatic BC undergoing primary site resection and metastasectomy exhibited optimal OS, particularly when metastasis involved only the liver or lung" - ie surgical resection of the breast and the metastatic site.
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Thats interesting to see how much of an uplift liver and lung ladies get from the surgery but not bone. Anything obvious in the study that would challenge the findings, like the other two surgical papers?
Ive been thinking about pushing for surgery again but the hospitals are going to be a mess here this winter and suspect it will not be encouraged unless there is a clinical reason to do so. I was reading through my diagnostics letters and I have few, but large, tumors. I blasted one, the other three in my spine have scabbed over, why not get the main one cut out and reduce the burden further? Ah well, CT scan in mid October and we will see whats up.
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Thank you, Moth.
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SondraF, for the bone, one thing I noted is that this I didn't see mention of SBRT or even traditional rads. I think as it's a surgical paper, they were really focused on surgical resection. Data set was to 2016, & very large (>50K) so it's a good study and the numbers are huge - for liver 72.8 mos v 48.1 mos. I mean, wowza.
My suspicion based on the prelim COMET-SABR studies is that SBRT for bone might start showing similar benefit but we need to see the mature data....so many of you are the guinea pigs that will be counted for the future
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Thanks, moth. This is going to be very valuable research. Hopefully, it will become the standard of care for those who are eligible.
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Moth,
thanks for sharing this, I like the fact that science is pretty fast moving and that pushes oncologists out of their comfort zone!
my understanding is that organs ie liver can rebuild again after resection, and good chance of rebuilding healthy cells. If I recall correctly few ladies- shared stories here- have gone to aggressive treatments and are doing well. For bone Mets treatments are different as well as outcomes, with options like SBRT, proton, filling up etc cancer cells/ tumors might die either sleep but bone regeneration is less likely happening specially with hormonal treatments.Sondra,
I’d like to know your MO’s opinion towards surgery of primary tumor. I had several discussions( my case bone Mets and lymph nodes) with my former MO and the current one, results: oncologists-in my case- are not very leaning towards surgery of primary tumor.
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Moth, Thanks for posting that study. It’s always nice to see positive outlooks. I’m not sure how ablation of liver mets (which I had) compares with resection but for me I think it was advised because it was an easier procedure for the patient. Time will tell, I guess
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moth, thanks for sharing. I have rarely seen surgery used to treat bone mets, but I know it has been done. I had no pain with my bone met but the ro made a strong case for rads. This rendered the met necrotic and it has been metabolically inactive since then. This was a whole lot less invasive than surgery and I wish it was used more for bone mets rather than just using rads for pain relief.
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Moth - ah, I read that a little too quickly lol!
Of course if you can cut out a bit 'o liver or lung thats different than whacking out a vertebrae Do I need to sign up for a trial to be able to read the whole paper? Would probably be for the best with more detail, because if I am reading that right then there is limited benefit to bone only getting a mastectomy because of the lack of surgical opportunity for bone removal? Interesting point about SBRT and all the "fun" RO lazer tricks now in use - I mean, as far as I understand those are relatively new on the scene and past the 2016 cut off of this study, no? Amazing how approaches have moved on so much in just five years and yet we are still debating primary removal for de novo.
exbrnxgrl - I remember after my 5 sessions to sacrum having a five minute conversation with the main RO and her muttering something about "we can radiate more if you want", but because this is a communicationally challenged country, no one explained to me why I was speaking to her, what further radiation would achieve or what exactly else we would radiate. So I don't know if she was open to doing my L3 and L4 right then and there (which have never caused me pain) or if she meant more rads to that painful sacral met. I was so new to cancer I didn't know what was going most of the time!
SeeQ - my (current) MOs stance is it stays in until it starts causing problems, like regrowing or something. I have had quite a bit of shrinkage to the point where I am having real problems with bras fitting now and the underwire on that side is poking my cancer-y axilla because the cup is too big in order to fit the normal side. I am 80% of the time ok with this approach and then the other 20% of the time I feel odd - either like Im neither here nor there, like its just more of Stage IV Limbo Land. Surgery was immediately off the table when they found the mets which, given the state I was in, was the right call. I know it comes down to a lot of factors on the physician side, but similarly I think it goes along with all the "cancer is all targeted to the individual now!" - my drugs are targeted (more or less), so why cant the surgery at least be considered on an individual basis as well within certain parameters? Which I guess is what these studies are trying to determine and this one points to some really clear parameters, at least for some ladies.
Metastasectomy - try saying that three times in a row quick!
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I am forever grateful that my MO referred me for rads to that one stubborn met. I got strong skeptical vibes from the radiation oncologist but he was going along with the plan that my MO wanted.
She also discussed surgery to the primary tumor, once she saw that I remained NED after the rads. Unfortunately, the current place is not in favor. I would like surgery to the primary simply because I’m curious - how much cancer is left in the breast and is there enough tissuefor genomic testing that might benefit me later?
I absolutely do hope more people with mets who may benefit from local treatments can get access.
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Snow-drop, while you didn’t ask me, I thought I’d share that my MO and Breast Surgeon at MD Anderson left removal of the primary tumor entirely up to me. At the time (2017), the two main studies on whether surgery would be beneficial or not conflicted with each of and both were too small or flawed to confidently lead either way. I had a single bone met and insurance approved it, so I opted to get it out. Currently, I believe there is some evidence that it is beneficial for those with low tumor burden and are fit for surgery.
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Moth, thank you for the link. The full article seems to be behind a pay wall, but looks like you were able to read the entire thing. Do they say anything about how they did the matching of the surgery/no surgery cohorts? That's usually the caveat for retrospective studies - that patients that were offered surgery for their metastases had fewer of them, and may have lived longer regardless.
It does look like surgical removal of the primary and the mets is becoming a serious option for those with a small number of tumors. Maybe one day people with one or two metastases will be considered stage IIID or something, and treated with curative intent.
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Hi, everyone. This thread has been quiet lately. Just thought I would post that I had my first Faslodex shots today. I will also be switching to Xeloda, but that’s taking a little longer. I’m sitting right now icing my cheeks. I was told to make sure I warm the syringes before, but when I said something, the girl said they no longer keep them cold, they warm them first. The needle is quite long, and it did hurt. I’m not going to lie. At least the first time is over.
I had some gastric wall thickening, and since I’m losing weight again and can’t eat much, I am thinking the Ibrance and Letrozole stopped working. It’s very hard to make that decision when your docs think you’re stable. I know my body and have felt for a while I have been progressing. I’ve lost 6.5 more pounds on top of the 17 I lost the first time around. The last time I was at this weight was when I was a kid.
I hope you’re all doing well.
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Damn KBL, I wish I had some tricks or words that could help. I hope the X is effective but easy on you, I want you to have a break from all this crap.
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Aww, thank you, Mae. I think we all deserve a break. I am hopeful this next line will bring those tumor markers down and let me eat.
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KBL, you hold out your hand and you ask for those syringes, and you hold them in your warm hands or blanket until they are not simply room temperature but warm. And you tell her to take ten minutes per side. You are the one getting these shots, not the nurse.
SP
(With nineteen months of Faslodex under my belt. So to speak.)
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ShetlandPony, I assumed since they weren't cold that that was okay. I put ice on each side every 20 minutes or so yesterday. I'm not doing too bad today. I also walked right after I got home for a mile and took some Motrin. I'll definitely take your advice and warm them some more. She did enter them in fairly slowly, probably not ten minutes but about five each. The nice thing is unless she's not there, she will be the one giving them to me. I thought maybe I was going to have a different nurse each time because that's how it is with my Zometa. 19 months. That's great. I sure wish they would hurry up with the pill, though. Lol.
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Hope the new medication regime works quickly and has you feeling better soon, KBL
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