De Novo Stage IV
Comments
-
KBL, it's really nice to hear from you. I have missed our group and our discussions. I can see that I've missed a lot of news, you have moved already and your daughter and your cute grandson are not too far away, but I am happy for you visiting them soon.
I also had a blood biopsy done, reported ESR1 mutation and 2 other mutations that alone driving bc, I am not sure how much Elacestrant would be effective but I am ready to give it a try. long story short, my 3 months ago scan showed some small progression in my primary tumor and a tiny activity in my liver, the recent scan showed progression in my liver, multiple tumors, and my breast has changed in shape like new progressions pushing outward. I am done with mis-handling my health at that teaching hospital and that MO professor medical director blah blah. I am in the process to transferring to a smaller clinic and I hope insurance won't make it difficult. right now I am off medications until the insurance approves Elacestrant, fingers crossed.
tinkerbell, it is good to hear from you, I have actually been away from the board for quite a while, the main reasons were constant changes on the site features, and dealing with lower back pain, thankfully it is better now. I am sorry about your father's health and I admire you for taking such a good care of him.
hello everyone.
0 -
JodyJ, wow, you’ve been through a lot. Thank you for the information. I’ve been on Xeloda. They took me off because it wasn’t protocol with fulvestrant, but I almost think it was helping with my stomach mets. I had a micro finding in one part last year in December and went off the Xeloda in January. An endoscopy in July showed it back in two places. I’m going to give the Elacestrant a try and see what happens.
I had asked if you had an endoscopy in our private message you hadn’t seen until later. Did you ever have one? That is the best way to see if there are stomach mets as far as I know.
I hope you stay in our group commenting so we can see how you’re doing.
0 -
Hi, Snow-drop. It’s been so long. I’m so glad to hear from you. Yes, we’ve been at this house about a year already. My grandson is 5.5 hours away in his new home. It’s crazy how fast time goes.
So here’s the thing. I told my doc I didn’t want to start the new medicine until after I get back, which I will have an appointment on October 17th. In the meantime, he’s getting the approval for Elacestrant. We will be very close together on our start times, and I would love to keep in touch to see how you’re feeling on it, and I can tell you how I’m feeling.
I’m also off all meds. The last Faslodex shots I had were August 8th, and I’ve been off since.
I’m sorry you’ve had progression. I hope you get a better doctor. I’m dealing with my second doctor since my move. I did not like the first new one. She kept blowing me off and sent her nurse practitioner in. I’m now at a smaller office only 20 miles away rather than the 60 I was doing.
I hope we both get great benefit out of Elacestrant.
Thank you for writing, and I’m glad you’re back.
0 -
kbl: Yes, I had an upper endoscopy in early 2022. The only finding of note was my hiatus hernia. The gastroenterologist thought that it and the Ibrance were responsible for my painful GI episodes. That seems unlikely now, although they may have aggravated the symptoms.
I definitely plan to post updates here on my diagnostic tests and treatment.
I hope the Elacestrant will work well for you and for snow-drop!
0 -
This may be a silly question, but did he take biopsies? I would assume yes. My stomach looked totally normal except for some gastritis, but I owe him everything that he took biopsies. I hope all gastros always take biopsies.
Thank you for keeping us updated, and I’ll post about my experience with Elacestrant.
0 -
Not a silly question at all. I believe he did a biopsy and nothing abnormal was found. I was already on a PPI for the reflux (pantoprazole). More recently, the surgical oncologist who will do the laparoscopy said she'd like to repeat the upper endoscopy at some point.
0 -
I think that’s a good idea. I’m glad nothing was found. I hope they can schedule the laparoscopy soon.
0 -
@snow-drop its when that primary starts acting up that I think the whole automatic 'no surgery for de novo IV" is misguided. Get the primary mets under control to start sure, but why not remove what is likely the bulk of the tumor load from the body and easily eliminate a future source of trouble? I know its all about uncertain survival improvement and making the case to pay for the removal but sometimes I wonder. I see the women who got the chemo and surgeries and they seem to be lasting much longer than those on the hormone pathways. I dunno, confirmation bias perhaps, or disgruntledness.
Thursday is my 4 year diagnosis anniversary at least, and while this year has truly TRULY sucked, Im grateful I am still here.
0 -
I don’t often post here as I am on a very different tx path than most with mbc. The debate over breast surgery in mbc patients is an ongoing one. I have seen more stage IV woman have surgery in recent years than I did a decade ago. I understand weighing the risks and potential complications of surgery against the benefits. Since the issue has not been settled as a whole, my feelings are that each patient needs to be evaluated individually based on their circumstances.
sondraf, I have never had chemo nor radiation to the breast area (I did have rads to the bone met). I have only been on AI’s and am currently on my first AI break in 12 progression free years. As far as treatment and lasting longer, there’s still too much that is unknown and unpredictable.0 -
KBL, thanks for your kind words. I surely more than happy to share my experience about this new med, I hope Elacestrant works for all of us, despite some disappointing results that makes me wonder if trial results were manipulated to get fda approval!
Sondraf, happy cancerversary, here is to many more years! I understood from your post that you did surgery, I am happy you passed all the trouble( sorry I have been away for awhile, had a bad undiagnosed lower pain made me annoyed and avoid sitting/ standing +new feature….) we have a lot in common, age, reaching our cancervesary at about same time, and sharing the same thoughts about removing the primary tumor. I remember we had a long discussion about this here. but here I am, and from day one I was told that "we don't touch the primary tumor unless it causes problems, because quality of life is important"! so now that my blood counts wbc, rbc, anc etc are being affected by the meds, they might consider surgery? in that case, I would have to go off meds for some time to qualify for surgery, and then there would be a post surgery period being off meds, wouldn't "being off-meds" upset QoL? I just cannot understand this logic.
jody, thanks for your well wishes, I really really hope this new med as opposed to many critics, can work wonders.
anyway, I said a firm goodbye to the teaching hospital for a smaller cancer clinic, they seem nicer and more approachable, I hope they won't get annoyed already with me for following up on everything. in that large teaching hospital I often felt like I am just a case/ number among many, and many times they just forgot to order scans or even worse, ignored to follow up on radiologist recommendations. what they do put you on their clinical trials or textbook approach, no creativity or the willingness to change treatments in favor of individual needs. I hope this small clinic and my new MO are able to provide the best services and work their magic.
0 -
SondraF, I’m glad you’re still here as well. I hope you are able to have many more years.
Snow-drop, I haven’t read much on it, to be honest. I probably should read up. Do you have a link to what you’re talking about?
Since the cancer was never found in my breasts, it would be pointless to have a mastectomy, and I’m not donating my body to science, but just to know whether there is cancer that just can’t be seen on imaging because it’s lobular, that’s what I think about. There is a lot about my disease that is elusive. Sometimes the not knowing where it is can be as bad as knowing where it is.
0 -
Update: My onc called me yesterday with the happy news that my pancreas and liver looked fine on the MRI. Even though we don't have tissue confirmation yet, he doesn't want to delay treatment any longer. So I'll be stopping anastrozole and Ibrance in order to begin capecitabine (Xeloda) next week. Waiting for results of DPYD testing to make sure I'm not among the 5% of people predisposed to severe toxicity of this drug. Fingers crossed. And tomorrow I turn 66. More reasons to smile than not!
1 -
JodyJ, good news. I’m happy you don’t have to wait to start Xeloda. I never had a test like that before I started. Let us know how you tolerate it.
0 -
such a great news jodyj
KBL, I see your post on Elacestrant thread, weninwi shares many great tips and information about this new med.
0 -
Yes, Snow-drop, I have been reading all that she’s put out. I also joined the Facebook group. My med comes Tuesday, but I have to think long and hard whether to start it before my trip or after. Please keep me posted on how you’re feeling.
0 -
jodyj—-good luck on Xeloda. I am/was on it for 5 3/4 years, but now I have a recurrence of some kind in my right lung. Biopsy coming soon.
For most of us, and especially me, foods high in folic acid made my hands and feet much worse. Once I figured that out, I have been soooo much better.
It seems that my NED periods only last 6 years (but I really shouldn't complain, I guess).
I had Foundation One testing 6 years ago for my chest node recurrence. But now I will have Guardant and Invitae testing.
1 -
Denny, I'm adding your note about folic acid foods to my list of tips. Thanks for that! It's good to hear that you have had success on Xeloda for such a long time. Good luck with your upcoming biopsy, other tests, and next treatment.
I feel so grateful to everyone on this site - I learn so much. ♥️
0 -
JodyJ…thanks! I use Aquaphor at night with silicone socks and food service gloves on my hands and feet. It works the best for me. Some ladies use urea cream, but it made me worse since it is an exfoliant.
0 -
More tips! Thanks, Denny! 😀
0 -
Hi everyone,
This is my first post, but I have been doing a lot of reading on the site. Thank you all for your thoughtful and knowledgeable posts! I apologize in advance for the length of this message. I have lots of thoughts swirling and consuming my days.
During my annual mammogram and ultrasound, areas of concern were found and a biopsy was done. The results confirmed IDC and DCIS in right breast (both <5cm), right axilia, Grade 2, ER-, PR-, HER2+.
My bone scan and CT (both with contrast) were clean, except for what was known about the primary tumours and lymph node involvement. I was originally diagnosed Stage III. As part of new guidelines here, I also had a PET scan (with contrast) about 3 weeks after the bone and CT scans. The PET scan indicated a handful of bone mets and two spots on my liver. I was then re-staged to Stage IV, with my treatment plan totally scaled back. Carboplatin gone from neoadjuvant treatment (“to keep in our back pocket for later”), surgery off the table (“no surgeon would ever do that and put you through unnecessary surgery that won’t have any survival benefit”) and no radiation. But a “really good prognosis - average survival is 5 years and some even live for 10+ years”.
That was very confusing to me. I wondered why I was not being treated as aggressively as possible? It really felt, in that moment, that now I am Stage IV, they decided that since I was going to die anyways, let’s do the bare minimum and put our time, money and resources into someone who actually has a chance to live.
Also, why was no one questioning the inconsistencies between the scans? I understand they’re different modalities and have different sensitivities, but do the different results actually make sense? We didn’t get much clarification from my MO. Her responses were vague and high level. Like she was just repeating key messages.
We pushed for a liver MRI as the MO told us a biopsy was not possible. We pushed for her to have other MOs look at my case (Google says she’s a resident and I’m not at all confident in her knowledge or experience based on our appointments so far) for another opinion. We also asked her to confirm with the surgeon about whether surgery is still an option as we are aware of the studies that support (and don’t support) local treatment of the primary tumour site.
The “second opinion” agreed with the current treatment of docetaxel, Herceptin and Perjeta every 3 weeks for 6 cycles. The liver MRI indicated that one of the spots was likely a cyst, and the second spot (and possibly some other tiny spots) was likely metastases by “diagnosis of exclusion”, so assumption has been made that all are mets. The surgeon said that she wants to wait and see how I respond before she makes a decision on surgery (I don’t know what she’s looking for or what the trigger is). Another PET scan will be done halfway to look at how I’m responding and “we will go from there”.
I have read this entire thread and it appears as though scans are not very reliable. Some metastases show up on bone scans and CT scans. Some don’t show up on those but show up on PET scans. Some don’t show on any scans except MRI. Or some don’t show on any scans at all! I don’t understand how this is possible. Why and how isn’t there more consistency? Why isn’t there more critical thinking around what the scans may or may not be showing?
Where I live, we have free healthcare so I can’t really shop around for a true second opinion. You’re assigned a MO and that’s who you get. We’re going to wait and see what she does with the results from the next PET scan. See if we need to push to speak to someone else or what our options are.
I’m struggling emotionally right now as it’s all very fresh. It feels like there isn’t a lot of hope for me even though stories on here show otherwise, which makes me very happy for all of you! Thank you for listening.
2 -
Harrow, sorry to see you here but welcome. We have some similarities, so I thought I’d chime in.
As to the scans, yes, they do have some different sensitivities, if a CT and bone scan correlate, great. If not, often another test like an MRI may be done to confirm one or the other.
“Lesions” is the term for a finding, which may or may not be cancer (knowing this earlier would have saved me a lot of worry and confusion reading my scans). If they can’t biopsy the liver, did they do a bone biopsy?
For surgery, you may well be a candidate since you have only a few mets (oligometasic), however, studies on the benefits are flawed and it is generally believed that overall survival is not affected.
Your treatment plan of a taxane with Herceptin and Perjeta is the standard for HER2+ BC, I’m in the USA but go to MD Anderson and had the same chemo.
Also, HER2+ is higher risk for spreading to the brain, which happened to me after finishing chemo and despite a clear brain MRI when I was first diagnosed. Have they checked your brain yet? I’d push for that, annually if you can.
Last thing, next month will be 7 years for me with MBC in bone and brain. I’ve been through a lot but I’m doing well and feeling good. There’s no reason why you can’t live well for several years too.
1 -
Hi illimae,
Thank you for chiming in! The bone scan and CT did correlate - both were negative for metastases. The PET scan showed metastases and was only done because of new guidelines that were put in place a month prior for people with infraclavicular (below collarbone) lymph node involvement - I had one that showed up on CT - otherwise I would have stayed Stage III and headed down that treatment pathway. The liver MRI reads somewhat inconclusive to me, but they have made the assumption that the lesions are mets because they couldn’t definitively conclude they weren’t.
Similar to the liver, my MO said that a biopsy cannot be done on the bones either. Even though I see on this site, it can (and has) been done. The report says the lesions are lytic lesions. Not sure if that means anything one way or another in terms of bone mets and treatment.
The PET scan was head-to-toe and my brain was clear but I’m not sure what scan is best for brain mets. Is it MRI? If so, maybe I should ask for that to be done too. How long after finishing your chemo did they find the brain mets?
I’m trying not to be too wound up right now, as like you said, taxane, Herceptin, Perjeta is the standard first line treatment for HER2+ regardless of stage. I just worry that by removing the carboplatin, my neoadjuvant treatment will be less effective.
Almost 7 years. How wonderful! And the fact that you’re doing well and feeling good is such great news! I wish you many more years of the same 😊
0 -
Harrow, yes, a brain MRI is the best, my brain mets (5 small spots) showed up 5 months after finishing chemo. I had a biopsy proven positive supraclavicular node, so we know cancer had traveled north from the breast already.
I get your concerns but I won’t be worried about the carbo, the Herceptin is really the most important part for HER+. The planned combo works well and fast for most people, including myself, and often completely eliminates the tumor.
0 -
Hi, Harrow! I’m so glad you’ve decided to tell your story, and you already seem very knowledgeable about how things work in the medical field.
I’m so grateful Illimae has responded, as she also has Her2+ and has so much knowledge.
You are right about some scans working and some not. I am one of those where all but MRIs and FES PET scan are pretty useless for me. I’m sorry your scans also each tell a different story. I think that’s one of the most frustrating things.
I’m not sure if they do tumor markers in Canada, but if they do, I would definitely ask to have them run before treatment starts so you can have a baseline and know whether they work for you or not. Some can have perfectly normal tumor markers with cancer all over, and some, like me, they work for and are one of the main tools I use to make sure I’m staying stable. Some doctors refuse to do them because they can rise for different reasons. Thankfully, my oncologist does run them.
Please come back and let us know how treatment is going. I know right now you are extremely overwhelmed. That is completely understandable. I hope you have a good support system.
0 -
illimae - thank you for the info on the MRI. I will request one going forward. I did read that up to 50% of us can expect to develop brain mets. I wonder if there anything that can be done to help prevent them other than not being Stage IV? I’m two treatments in and it seems to be working for me so far. My infraclavicular lymph node completely disappeared within about 7-10 days of starting treatment (it was the only one I could feel) and the primary tumours in my breast have shrunk. When I start to go down the dark path, my husband keeps reminding me that I’m responding and that’s all that matters right now. It’s sometimes really hard to remember that.
kbl - thank you for the warm welcome! I don’t know about tumour markers here. No one has said those words to me. I get bloodwork done before every treatment but I think that it’s just standard tests to make sure I’m ok to do the next one?
0 -
Harrow, I’m glad you have great support, it shows. For someone new to such a shocking stage IV diagnosis, your posts are very rational and composed, it’s impressive for someone in the worst of it (first 6 months), you sound like you’ve been at this for a few years.
As to brain mets, prevention isn’t really a thing as far as I know. The 2 main reasons are that most chemo drug formulations contain molecules too big to cross the blood brain barrier, leaving it vulnerable. The other is that cancer cells are no different from our others, except for them being bad and they can travel anywhere in our body and brain with no roadblocks.
The good news for us HER2 patients is that once Herceptin was created, there has been a huge focus on blocking the HER2 receptors with many new treatments (like Enhertu) and more in various trials.
0 -
harrow,
You’ve been given good info by some of our long time members. Unfortunately, preventing mets, whether to the brain or other places, is not something researchers/scientists have been able to do. The goal of most treatments is to prevent progression in stage IV but it’s a bit of a crap shoot as no one can predict whether a given treatment will achieve this. I am happy that you’re responding well to your current treatment and hope that continues. BTW, my medical facility does not do tumor markers at all .
0 -
Harrow - an unfortunate welcome to the group no one wants to be in. I'm glad you found us; there is so much great support here. I agree, you sound like you're dealing with your dx very well, for as early in treatment as you are. It's great that your husband is so supportive and even-keeled. It must be a relief, to some extent, that you already have 'proof' that your treatment is working in that you can feel some of your tumors shrinking.
I wanted to add that it seems to be ILC that is invisible on many scans. I don't think I've heard of anyone with IDC that didn't show up on scans. I'm sure someone will chime in if they know something different.
0 -
Hi Harrow so sorry you had to join us but glad you found us. Totally agree with others that it seems you’re handling the dx as best as you can right now and it sounds like you have great support from your husband.
I’m triple positive (ER+/PR+ and HER2+) and I am on a similar treatment as you for the HER2+ side of things. A taxane chemo plus H&P are very standard of care. That’s great you’ve been able to see signs you’re responding to treatment! I had scans 6 weeks / 2 cycles into treatment in August and it did show my innumerable liver mets were all shrinking. I’m also trying to remind myself that’s what matters right now that’s great advice from your husband. It’s a whirlwind of emotions that thankfully has gotten better to manage over time.
In regards to brain mets… I’m planning on going on a trial once I’m done with chemo to give me a 50/50 chance to add a HER2 drug that does cross the blood brain barrier called Tucatinib. This is a drug that’s already approved to be used on a later line (with Xeloda and Herceptin) but they are trialing it to use during initial maintenance. So I’ll either be just on H&P plus placebo or H&P plus Tucatinib. Plus some stuff for my hormone positive side of things but that doesn’t involve the trial. I like the thought of having something that could potentially be preventative to the brain but I suppose the results of the trial will show if that does end up happening. It’s called the HER2CLIMB-05 trial. Not sure where all they are trialing but could be something to discuss with your oncologist if interested.
Like others have said there’s a ton of support here. I clung to this site the first few weeks I was diagnosed and everyone is so lovely. I hope treatment continues to go well for you!
0 -
Harrow, do you have an available portal to be able to see your bloodwork or you’d rather not? I do keep an eye on mine just to make sure nothing is weird. When I was on Ibrance, some of the bloodwork was all over the place, but I knew it was from the drug and nothing to worry about.
0
