De Novo Stage IV
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SondraF, I’ve always told myself if markers don’t rise and fall monthly and only go up, time for a switch. They work for me too. I’m sorry yours keep rising.
DanceMom, sadly, I had a frozen shoulder for over a year. I didn’t get any therapy for it. It finally got better and I’m able to move it normally again. I hope yours doesn’t take as long. Thankfully, it didn’t hurt when it was straight down, only if I moved it other than straight down. They are not fun.
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Mojo,
Thank you. I knew something was wrong. At least now I know. Going to start the clinical trial and hope it kicks this back. Hope you’re doing great, and eating those potato chips!
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KBL,
Thank you for starting this thread and for all of the folks who have chimed in. I am contributing on behalf of my wife who isn't really keen yet in participating in support groups. As her caregiver I feel it's my duty to be as knowledgeable as possible which brought me here.
We too began this journey quite unexpectedly and very recently. My wife began having recurring stomach pain in October of 2022. Not all the time and not every night, but about every two weeks a pain right in the center of her gut would wake her up at night and keep her awake for several hours. It occasionally led to nausea and vomiting but only rarely. I'd had gallstones years ago and thought it sounded similar so we were not too worried. In January 2023 she finally had enough and went to her primary care manager who ordered a bunch of blood test and referred her for a CT scan of her stomach. Her blood work came back showing she was quite anemic (macrocytic anemia specifically) and the CT showed moderate thickening of her ascending colon and mild ascites. An MRI showed a lytic lesion on her spine in the thoracic region. So she was referred to both hematology and gastroenterology.
Initial non-invasive screens weren't helpful so she was set up for a bone marrow biopsy and some scopes (colonoscopy, endoscopy, and endoscopic ultrasound).
We found out on 6 April that she has invasive lobular metastatic breast cancer which biopsies of her GI tract found in both her upper GI and colon as well as her bone marrow. No prior symptoms of breast cancer. No family history. And thus far, no genetic predisposition. They subsequently ordered mammogram, breast MRI, and breast ultrasound. None have detected any hints of cancer. Cancer is ER+, PR+, and HER2-.
She is only 43 and pre-menopausal. So she was started on goserelin (Zoladex), ribociclib (Kisqali), letrozole (Femara), and denosumab (Xgeva) all just over 2 weeks ago. She had blood drawn about 10 days after starting which showed both tumor markers were already declining (CA 15-3 and CA 27-29) so that seems like a good sign. Her blood counts have also gone down but that is to be expected with ribociclib. Side effects haven't been too bad. Some fatigue, insomnia, headache, dizziness, and nausea.
Docs figure she's had this cancer for years without detection. I assume that means it's pretty slow growing and not aggressive. If she could thrive for years without treatment we're hopeful that with treatment she'll do even better.
The first week following treatment was rough. All the stages of grief. But we emerged from that and realized that while this disease may kill her, it won't kill her today or tomorrow and we have life to live. We have three kids who are all still in the house (oldest graduating this year). For the first week I couldn't look them in the face without crying at the thought of what grief and heartache their futures hold. Fortunately that passed.
I have little doubt that the oncologist we are seeing is good and is treating her with the best care available, but we do have an appointment on the 11th of May with MD Anderson in Houston for a second opinion and to open the door to subsequent treatment options (including clinical trials) for if/when things progress. We are also moving to the northwest this summer so may seek treatment at Fred Hutch in Seattle if necessary.
At any rate, she is like many of you who never saw this coming. Diagnosed at stage IV right out of the gate with limited treatment options available and no source of primary cancer discovered. Given that it's ILC she has, it seems it is also less receptive to either chemo or radiation so endocrine therapy is her best hope.
I have read many of your entries and will continue to sort through them over time. It is amazing and inspiring to read your stories and your hope gives me hope. Whereas we first thought of the diagnosis as a 'death' sentence we are slowly starting to view it as a 'live' sentence, as in, get busy living for the time may be short.
I hope you all have a blessed day and I look forward to further conversations in the future.
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Bighubs, I’m so glad you were able to post. It really touches my heart how you’ve come here to tell your wife’s story and your story as her husband. I’m so sorry your family is going through so much. There are many of us who have been here for a long time, so if you ever have any questions, please ask.
Kris
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Bighubs: Your wife is so lucky to have a husband like you. You are a blessing. It is such a shock to have a de vovo DX. We are for your wife, through you.
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Bighubs, you'll find much support here. I am also representing my wife, as she sadly was diagnosed at age 33 six years ago. A feeling and memories of me who cannot look into my naive 2 year old son's eyes is so familiar. I cried my eyes out and fainted not once - this is how scary it was. It goes on until today. But… we got up from crawling and sun has won over darkness. You guys can do it! I am optimistic that occasional cures already occur, and that most of us with metastatic disease in developed countries will live for many years.
Saulius
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big hubs,
I responded to you on the thread you started. I don’t often post on this thread as although I am stage IV de novo, that was almost 12 years ago so I’m not very “novo” . Your attitude is great but as I mentioned on the other thread, don’t deny the negative feelings when they come up.
While I have seen the lives of stage IV patients prolonged as new treatments are approved, I am not on board with the fact that there are some who are cured. Yes, there are some, like myself, who may appear cured but without knowing how or why it happened it’s just a fluke. A cure to me would be identifiable actions/treatments that when applied to a group of people often yield the same result. I’ll settle for chronically managed at this point . So, lack of cure not withstanding, there is hope for those who live with mbc.0 -
Thank you to those who replied, both to this thread and to my original post. I've also been in contact with KBL separately since I was having a difficult time posting initially and none of my posts were showing up. Also, it looks like her diagnosis most clearly matches my wife's (ILC de novo stage 4 with mets to bone/marrow and stomach). It just seemed like we already had much in common.
I appreciate the words of encouragement. I realize that having a positive attitude might not alter the outcome, but will certainly make the journey a much more enjoyable one than the alternative.
We have our appointment over at MD Anderson this Thursday for a second opinion on diagnosis and treatment. Not that I have any doubts, but I don't want to have any regrets later on down the line, and it opens doors for other things later. I'll let everyone know how that goes.
While a "cure" may not be available yet, in the meantime I'll settle for a successful long-term treatment/management plan.
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bighubs
Your wife is certainly very lucky to have you are her caretaker. She is going through so much and how sad it is that she wasn't dx'd much earlier.
I am at 21 years, 5 months since my MBC dx. But I had no pain so was quite blindsided to be Stage 4 already at dx. My original mets were in m liver and I had a chest node recurrence 11 years ago.
CT scan coming up and my last one showed strange "spots" here and there. This stuff sure isn't fun.
Take care,
Denise
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Hi! Having a hard time negotiating more changes to the site, but I found you.
Bighub, chronic is how my MO tells me to think.
Denny123 21+yes is helpful/hopeful for all of us, even though I get that it may not be your ideal. I hope "spots" are manageable.
Exbrnxgrl- "old" de novo is what we all aspire to!!!!!
Bsandra -stay optimistic- your wife is strong and needs your optimism and information gathering.
Elderberry, kbl happy to see you. Frozen shoulder SUCKS. Especially when it's supposed to be the "good" one. I'm working on it but miss my old pre-covid, pre- diagnosis active life.
Sandra. Trying to deal with PT insurance here. All the smaller specialized places (including my longtime dance PT) closed during covid. So I'm at a big corporate place. It's not ideal, I've seen 4 different therapists when they leave or change schedules, but as long as my dr gives the prescription and I can pay the $100/session (that's becoming a big factor) I can get help for the frozen shoulder. My goals have changed from "being able to swim", to "demonstrating proper porte de bras" at work, to being safe in the sea and being able to ride my bike, to being able to lift my arm enough for my overdue mammogram on the remaining boob.
Anyone else a "sandwich" generation? That's my new stress. MY recital season craziness, family business craziness, a college graduation, middleschool poop- exams and recitals, young adult child moving out, POA for elderly Aunt, admin for uncle's estate plus his interment, elderly parents visiting ...no time for cancer!!!!!!!! Verzenio can take back it's side effects and shove them back from whence they came!!!!
White blood very low (anc 1.0) , but other bloods ok, so we will revisit this in a month. I was started on low dose of 100 but there is room to move down if needed. My body reacts very strongly to meds (Including imodium, so im still figuring that fix out) My MO doesn't do markers. No scans for a while.
Sorry so long. That's what my post bloods cocktail will do 😘 hello to all I missed by name.
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Tried to update my medication, but now all my info seems gone.
Anyway, I will continue to read and follow and not post much as I can't negotiate this site.
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DanceMom, I’m glad you found us. I’m sure you already know Bookmarks is the old Favorites. If you click on active topics, your bookmarks are marked in red.
I hope your shoulder eases up and that your bloodwork stays normal. The pesky ANC is such a pain in the a**.I’m not of the sandwich generation. I can’t imagine how hard that is.
I’m sorry you lost your information. I hope the mods can help you.
Kris
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Greetings all,
Just wanted to update everyone on our appointment at MD Anderson in Houston last week. Nothing earth shattering. We met the doc there and she confirmed diagnosis and said if wife was a patient there they'd be following the same course of treatment as her oncologist has her on as it is standard of care. She did give us a little more information about the cancer itself including that it's ER 80%, PR 40%, and HER2-1+. At diagnosis we'd only been told it was ER and PR positive and HER2-Negative. But HER2-1+ is different than HER2-0 and adds at least one potential additional treatment option further down the road (Enhurtu). She also said our information is now in their database and they routinely match patients in the database with clinical trials and that being treated at MDACC was not necessarily a precondition to participation. So that was good. All in all it was worth the trip.
Wife had a follow-up appointment with her oncologist last Friday for her second Zoladex (goserelin) and denosumab injection. She also had a second EKG to make sure her heart rhythm wasn't being affected. She had blood work pulled a few days prior so he could check blood counts and tumor markers. Unfortunately, blood counts were quite low and tumor markers (CA 15-3 and CA 27-29) were both up. I know a lot of docs don't even look at tumor markers, and if I wasn't looking at them they probably wouldn't bother me, but knowing they are up from the two weeks prior and even higher than they were when she began therapy 1 month ago is a little disconcerting. Trying not to put too much stock in it. He did tell her to take another week off the ribociclib to see if her blood counts come back up. So she'll get another blood draw on Friday. Hopefully blood count is up and tumor markers are down.
She remains essentially asymptomatic so I don't know what is going on. She didn't object to the additional week off of the ribociclib as the fatigue and brain fog it was giving her was off-putting. She said yesterday she felt like her old self. Hopefully she can get back on it though and the side effects subside with time.
That's where we're at. Got our oldest graduating from high school on the 27th of May and then a few weeks after that we are moving from Texas to the Northwest where we are originally from. We're a military family and have been all over the globe. Thought we were going to Germany this summer until the diagnosis derailed that plan. Her oncologist was confident that we could go and said he knew the oncologist at the Army hospital over there could take care of us, but if she began an unexpected rapid decline I wanted her near friends and family which a move to the northwest provides. So a busy season coming up for us. I hope it all goes smoothly.
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bighubs, I was at MDA last week too but got my regular scans (howdy neighbor). Happy to hear that your wife is feeling better and eligible for Enhertu if/when needed, it’s tough but works great for many. I wish you a trouble free move and easy resettlement.
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With therapy begun only a month earlier, some of those numbers may be due to cell die off. Or at least I seem to recall that being a thing. Its good that she is asymptomatic and seems to be tolerating treatment well, dont worry too much if they need to dose reduce - better to have quality of life rather than not.
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I was thinking the same thing, Sondraf.
Congratulations on your oldest graduating. You are going to be extremely Jay with that move. I’m sorry you don’t get to go to Germany.
Kris
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Bighubs - I want to chime in about the tumor markers. Keeping in mind everyone is different and responds to the meds differently, here my experience. When I started abemaciclib (same drug class), my CA 15-3 spiked from the low 200s to the high 800s and took 3-4 mos to start reducing significantly. I reached NED in 7 1/2 mos, so it was clearly working. It was a big relief to see noticeable improvement on my first follow up scans at 4 months.
Congrats on your oldest graduating!
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Thanks everyone for the well-wishes and reassurance. I read yesterday that about 23% of patients on Zoladex experience 'tumor flare' in the short term. Apparently the body, detecting that ovaries are about to shut down, makes one final push of estrogen production. The spike in estrogen production corresponds to a spike in tumor activity in HR+ cancer. Makes sense. Also referred to as 'false progression because it is short lived, though can be critical if the cancer makes significant gains during that phase. So we are hoping that is what it is and are determined to give the treatment time to see if it's working. You read stories of patients who are resistant to therapy from the beginning despite the HR+ status and I was immediately concerned that was the case. I know that is rare and apparently even rarer in the de novo stage 4 category, but worried about it anyway. Should hopefully know more Friday.
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Bighubs,
Sorry you are here, but you’re in the right place to get information and support. I saw your wife is Lobular. I am as well. I was diagnosed 1/2022. Originally Mets to bone, lymph and small breast tumor. Most cleared up with Ibrance and Letrozole. But 16 months later colon lesion and medication change. I wound suggest getting a colonscopy. I know they say the meds will treat everything since stage 4 is systemic but it’s good to know. My colon lesion was just found on a colonscopy and I have no comparison to see if it’s new or if it’s been there. Also at some point genomic testing. I hope they did genetic testing to see if there were any hereditary mutations that could be passed down to your kids. There are lots of treatment options and as you read here many are living good lives. Where are you relocating to? I hope all goes well.
Deb
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Deb,
My wife did have a colonoscopy early on as part of the diagnosis as a 'thickening of her ascending colon' was annotated on an earlier CT scan when they were trying to determine what the problem was. They biopsied that area of the colon and it was positive for the cancer. They also biopsied her stomach during an endoscopy at the same time and it was positive as well even though nothing else has indicated cancer presence in her stomach (minus the stomach pain she started having in October '22). GI Doc said he didn't see anything during either the colonoscopy or endoscopy that looked worrying (other than the angry part noted during the colonoscopy) and following the procedure he said "she doesn't have colon cancer; I don't need to see her again for 10 years". So until the biopsy results came back we thought we were good.
Are you saying your medication was changed at the 16 month mark even though they couldn't be sure the lesion was new and may have existed at the time of diagnosis? I guess that's prudent to assume there was progression, but if everything else was clearing up I guess it seems unlikely to me. But I'm no doc.
She has had genetic testing and has none of the genes associated with risk. I think they tested for 9.
She's also had genomic testing (by a company called Tempus I believe), but we've not seen the results from that yet. The doc at MD ACC asked about it as well as I understand it can open up additional targeted therapy options (Piqray was specifically mentioned).
We are moving to the Fort Lewis, WA area (specifically unincorporated Thurston County near Lacey). We own a home there and have since 2015 so the move should be relatively seamless. We both grew up a couple hours from there out near the coast so lots of family and childhood friends in the area as well. Should be good.
Sounds like your disease has much in common with my wife's. I hope for all our sakes the treatment plans are effective indefinitely.
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Bighubs, I am ILC but Stage II. I am also Her2 1+ which was considered as negative when I was diagnosed almost 4 years ago. Lately, it is considered slightly positive however, it is not decided yet. I was told that ILC is very slow growing and that makes it a good candidate to AI (aromatase inhibitors). I too have a kid as a sophomore in high school. I wish your family good luck. Once she is comfortable with treatments, you can go to Germany or make other fun plans.
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Bighubs…I admire the fact that you are so educated about your wife's care. I was dx'd over 21 years ago, so all of the new treatments are pretty foreign to me.
I am on my 10th chemo and 5th line of treatment.
Good luck to both of you!
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@bighubs I could swear that my first zoladex shot prompted my sacral met to go on overdrive and to the point it almost fractured. It was quick too, within the first week after injection. Thankfully radiation also worked pretty quickly, but it was quite scary. At least you are more educated than I was!
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Hello all, popping in to introduce myself and hopefully will help calming some anxieties. I just got diagnosed stage 4 de novo, IDC, triple positive, multiple large spots found on the liver and one on the spine. Getting diagnosed at 29 was already a gut punch then to find out it’s already spread so much has taken such a toll on my husband and I. Got my breast lump initially looked at May 11th and first chemo treatment (Enhertu) tentatively to start June 13th along with taking Lupron injections.
I’ve been reading on all of these threads and you all seem like an amazing group of people but I am so sorry we’re here. I always hear the beginning with all the processing and waiting is one the hardest times and I sure hope that’s true because this has been so so hard. Seeing it affect my loved ones especially my husband is honestly the hardest part for me so far. I’ve been so inspired seeing so many of you fighting this battle for so long and only hope I can be part of that group. My oncologist said it very recently got approved to use Enhertu as first line of defense and hope this will bring good results (I’ve also posted in the Enhertu thread so far).
Just wanted to say hello mostly, glad there’s a place to come to where people can understand the struggle. I don’t want to put all my anxiety and negativity on my loved ones when they keep striving for me to be super optimistic. Also I’m still learning some of the medical lingo so sorry in advance if I don’t know some proper terms, trying my best to learn as much as I can while in this awful “waiting period” lol.
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Welcome Bobbi Jo, I’m older than you but I too was diagnosed stage 4 from the get go at 41, too young for MBC, so I thought. It is true that the beginning is the worst and once treatment begins and you learn what to expect, it’s wadi to manage the new routine. I’m also on Enhertu and honestly it’s tough but definitely doable once you get the side effects under control. We’re here for support and to answer any questions, no matter how small, dark, silly, whatever. I’ve been living with this for almost 7 years now and am doing well, I hope that helps :)
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Hi illimae, wow 7 years! I hope you continue to do well for such a long time! It really does help hearing from someone who’s been at it for so long. Definitely nervous to deal with the side effects at first but at this point just very ready to start. Thank you so much for the offered support, means so so much!
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Hi and welcome, Bobbi Jo. I’m so glad you found our thread. I am so sorry you had to join, though. I am old in comparison, and I absolutely hate it when there are those getting cancer at such a young age, like you and Illimae.
If you have any questions, please don’t hesitate to ask. Illimae can definitely help with questions about Enhurtu. I am on Faslodex at this time, so I haven’t had experience with Enhurtu. Please let us know how you’re doing on it once you give it some time.
It is so frustrating waiting to start treatment. I hope it starts soon.
I have had mets almost ten years. August will be ten. I have lobular, but the treatments they have out now have come such a long way.
I hope you can feel like you have a safe space to say however or whatever you’re feeling. We get it.Kris
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Hi Kris thank you so much for the warm welcome! I’m already so appreciative hearing from some of you and will be sure to update on how treatment goes. So sorry you’ve been at this for ten years but also so inspiring to hear from someone who has been dealing with it for so long. I hope treatments continue to go well for you!
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Bobbi Jo, two more things…
5 of those 7 years have been with brain mets, something is HER2+ girls have to be extra aware of.
Also, I and many others found the first round of Enhertu absolutely miserable. I wondered if I could continue, if I’d feel that sick and fatigued but each treatment did get easier and I was able to find what works for nausea and vomiting. Eventually, I got a dose reduction due to severe fatigue, now I feel great!
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Thank you so much for pointing this out illimae.
My oncologist did point out the higher chance of brain mets. She said even though I have no evidence of it now it’s good that Enhertu penetrates the brain barrier (I’m hoping I remember the terminology right lol). Also I’m a naturally nauseas person, diagnosed with cyclic vomiting syndrome 7 years ago, so I’m definitely most worried about that side effect. Hoping I’ll find the right things to help with that.0
