HER2+ cancer not responding to targeted therapies
Hi,
I'm in a weird situation, and I was wondering if anyone else's has dealt with something similar, and if so, how.
I was diagnosed in February with Invasive Ductal Carcinoma, 5 cm tumor, Grade 3, faintly estrogen positive (3), progesterone negative, and HER2+, with lymph node involvement in my armpit and over my collarbone. It's a very aggressive cancer. The thing appeared out of nowhere, and in the month it took between diagnosis and the start of chemo, it grew over 1 cm. They started me on six cycles of docetaxel, carboplatin, trastuzumab, and pertuzamab every three weeks.
There were setbacks, as I didn't tolerate the treatments well, but what we realized is that after four infusions, with a one-week delay between 3 and 4, is that the mass in my breast had actually grown throughout the chemo. It is now over 10 cm (I'm not sure by how much and I don't want to know at this point). Only my lymph nodes responded.
My oncologist consulted with the rest of my treatment team, and we're going to surgery ASAP. More chemo just gives the thing more time to grow, while further wrecking my body. It's now of a size where it's really uncomfortable in and of itself, and it's straining all of the structures in my shoulder. I also don't like the look of my skin at one spot. And this is after four cycles of chemo, with a tumor that was about the size of a grape when I found it.
But that's the problem. Why did a HER2+ tumor fail to respond to the targeted therapies? For that matter, why did that whole toxic cocktail do nothing but slow it down a little? My oncologist has never seen this before, and is at a loss as to how to move forward. She has a few ideas, and some time to look into other alternatives, but my entire treatment plan is now out the window. I'm devastated, because I had a terrible time with those infusions, to the point where some parts of me might not recover, and all that misery had only a minimal result.
Has anyone else been in this situation? Or known someone who was? Or have any kind of insight at all?
Comments
-
I had TCHP for an ER/PR negative, HER2 positive tumor. I did NOT have a complete response from the chemo. So I had surgery and then did more chemo - AC this time. The docs were fairly sure the ALND surgery mopped up everything, but not sure enough that I didn't have 4 more rounds of the different chemo. And then I had Herceptin for the rest of the year. And still had 5 weeks of radiation.
Could be the HER2+ was not very strong? I don't have any other suggestions except to ask are you at a major NCI hospital? You didn't list where you live. Maybe it's time for a second opinion at a hospital & doc with more experience. When you get time, please go to My Profile and post your diagnosis & treatment to date. You will also have to check the box to make it public. When is the surgery scheduled? Please let us know how it goes. The biopsies from the surgery may change everything yet again. Good luck
-
Hi, MinusTwo
Thank you for your reply! I'm unwell today, so I didn't quite finish sign-up, sorry. All of the options are a bit overwhelming. I'll go back and fix it when I can.
I'm in Michigan. There is one major NCI hospital in my area, and I know from experience that the care there is terrible. Had I gone there, the cancer would have metastasized before they bothered with a mammogram. I also can't afford them. I'm reliant on a program through my hospital to cover what my insurance doesn't. However, the hospital where I'm being treated is excellent, less pomp and certifications, more genuinely good doctors.
I see the surgeon on Wednesday, and I suspect she'll schedule me ASAP. She has to have a look at the tumor, and she may want scans, too, because it's very different from what she saw before I started chemo.
I don't know if it's only faintly HER2+ given its aggressiveness, although something else could be driving that. My sister, who has done cancer treatment research, suspects that the tumor is not homogeneous, but we won't know until we get it out.
-
I saw two surgeons today, the breast surgeon and a plastic surgeon, because the tumor is of such a size now that the wound left behind from removing it cannot be closed. My chest will have to be reconstructed, apparently from skin and muscle taken from my back. I will have skin grafts to heal from as well as breast surgery.
It also started bleeding and oozing fluids today, to the point where it left a small stain on my shirt.
Nobody's sure what's going on, only that they have to get it out quickly. They're going to talk to a radiation oncologist, to see if there will be any benefit in doing radiation before-hand, but both surgeons think that any benefit will be outweighed by the damage that can happen with another delay. It looks like they can fit me in in ten days to two weeks. I'll get a phone call soon. In the meantime, if the bleeding gets to a point where I can't handle it with gauze dressings, they will refer me to wound care.
The surgeon looked at the tumor type, and rattled off my chemo in a puzzled voice. Apparently, what I was given usually works. There's no rhyme or reason to this as far as anyone can tell. The only consensus is that it must be removed, because while its grown rate on chemo was impressive, off chemo, it's frightening.
Hopefully, my body can withstand surgery in two weeks, because it didn't take chemo well at all.
-
Hi MissRosie,
I haven't started chemo yet, so I do not have any insight to offer, but I could not read this post and not respond. It sounds very difficult, what you are going through, and I am so sorry you have to go through it. I hope the surgery goes well and your doctors develop a good plan for next steps.
Hugs,
Leatherette
-
I was diagnosed with IDC, ER/PR negative HER 2 positive. I had neo adjuvant TCHP chemo. I did not have pCR (complete response). I had ALND surgery and them AC chemo. Then rads while I was completing a year of herceptin. My final treatments were 3 years ago. So far I am NED.
-
Hi miss Rosie,
I'm so sorry you're having to start this lousy journey with more problems then most.
I'm a lot further out then you, but having similar problems. I started treatment in 2012. I was never given an option of neo/adjuvant treatment. So had surgery first. Did my year of herceptin. All scans were clear. Tumor markers normal. All was right in my world. Then in 2016 I got a rash on my chest. (Cancer side) Biopsy was done. It was IDC her2+++. Tumor markers rising . On to herceptin/perjeta/navelbine. Tumor markers continued to rise. More scans. All clear except questionable for bone mets. After 3 months of rising tumor markers, onc changed me to kadcyla. (Oct 2016) In feb of 2017 I was having unbearable back pain. More scans. Confirmed bone mets with fractures. Tumor markers continue to rise. Bone mets coming and going. Onc said he's never seen anything like it before. (Aren't I special?) Due to continued progression I was switched to Tykerb and Xeloda in May. Tumor markers finally going down. My sis worked for an onc. He said we just need to find the right cocktail. I hope this is the one.
Now I found a lump in opposite armpit from breast cancer. Biopsy confirmed IDC her2+++. My onc went through all my past scans. The lump has been there from the beginning. The radiologist has missed it for almost 5 years and multiple scans. So I was stage IV from the beginning. Needless to say I'm very pissed.
All you can do is take one day at a time. If you get thrown a blow, punch it back. Stay strong.
My sister texts me "carpe diem" everyday " make the most of everyday and give little thought to the future"
Best of luck to you.
Stay strong
And very big hugs to you
-
Sorry for the radio silence. I was in the hospital for nearly three weeks.
They opted for radiation after all, in hopes of saving some of my skin, shrinking the tumor, and slowing the oozing and bleeding, the latter of which had gotten so out of hand that it put me in the ER. Arterial bleed through a tiny fissure in the exposed part of the tumor. Fortunately, we were able to stop it to transport me, since the fissure was small enough to respond to pressure.
I've had nearly three weeks of radiation, and some things are better, but a family meeting with some of my doctors indicates that the overall news is not good. Without effective chemo, they can't do much, and the usual treatments for a cancer like mine have already failed. It's not quite inoperable, but it would be major surgery beyond the usual masectomy, requiring skin grafts and plastic surgery to close the wound. My oncologist is consulting everyone she knows, but the bottom line is that this cancer is, for whatever reason, so aggressive that we're one step behind it, not the other way around. Without effective chemo, there's little anyone can do to stop it. Unless we stumble over a miracle, I have months to live.
I was diagnosed in February, and started chemo in March. Negligence or incompetence aren't issues here, it's the cancer itself, which has behaved very strangely from the beginning. It was fast-growing and aggressive, which is unusual for an IDC, and didn't respond not only to targeted therapies, but to the carboplatin and docetaxil as well. Its response so far to radiation is sluggish. It has not only started growing through my skin, which most cancers don't do, I've developed tumor fever, which is unusual in breast cancer.
No one has answers. I just hope that no one stumbles across these posts and sees themselves in them.
-
My situation isn't exactly the same as yours, Miss Rosie, but I too have a HER2 positive tumor that had minimal response to chemo, Herceptin and Perjeta. They tried taxotere and carboplatin witn HP as well as adriamycin and cytoxan. I just had surgery and the residual disease area was large (10.5 cm), much larger than expected from the MRIs (5.6 cm) and the pathologisr said that there was minimal response to the chemo. I also had some lymph node involvement (4 of 35 nodes with macrometastis). I am rather concerned about what the oncologist will have to say about the likelihood and treatment of future metastasis. Next up - radiation. All the drugs that are supposed to be so helpful apparently are not in my case. The primary occurrence in the breast has now been removed, but I'm wondering where other cells have gone.
-
I'm so sorry this is happening to you.
Is there any chance you can try another chemo? I had an inoperable 10cm Her + tumor with positive nodes.
They started me on FEC chemo first
After a week from my first chemo the tumor shrunk considerably, I ended up with a complete pathological response.
Have you had this chemo?
- 5 fluorouracil (also known as 5FU)
- epirubicin
- cyclophosphamide.
-
have you tried to change your diet at all? Any attempts at natural remedies
-
Snowfall, I hope with all my heart that your cancer isn't as aggressive as mine. It's unnerving, isn't it, when chemo doesn't work as expected. I also hope they're able to mop everything up for you somehow.
-
bella76, I'm going to write those down for when I see my oncologist next week, to see if she's considered them. Thank you.
-
Missarmy04, no and no. My diet, once cancer treatment started, has consisted of whatever I can tolerate. There have been periods of living on Ensure, diluted orange juice, and crackers, or applesauce and peanut butter sandwiches. Anything else might as well have been a plate of cardboard and motor oil. I picked up c-diff sometime after my third infusion, and that pretty much wrecked any hope of a healthy diet until it was treated, which took a few months thanks to a false negative test result early on. I'm eating a lot better now, but it's been a while, and I'm still not quite back to normal.
As far as natural remedies are concerned, it's a completely unregulated industry. Even if I thought I found something that really worked, there's no guarantee that what one buys at the health food store is what the label says it is. The expensive regimens that supposedly work miracles are just as unregulated. As long as they word them carefully, they can make whatever outrageous claims they want, and the FDA can't touch them. With cancer, that's an awful risk. I know that modern medicine can fail because I'm living that failure now, but at least there's some oversight.
-
MissRosie,
I am so sorry that you are going through this terrifying ordeal, and have not stopped thinking about you since I read your posts. I have no medical expertise, but wanted to give you my two cents. Probably not worth much, but I wanted to do something to help:
1. Are they able to do a further analysis of the tumor (either the specimen they have from your original biopsy, or go in and get more)? If your sister is right and your tumor is heterogeneous, perhaps there is a targeted therapy for it? A different chemo regimen? See this amazing story: http://www.nytimes.com/2012/07/08/health/in-gene-s... Summary: An oncologist himself developed untreatable leukaemia. His colleagues analyzed the cancer and discovered that a gene had malfunctioned. There was a treatment to turn the gene off that had only been used in kidney cancer. They gave it to him and it worked.
2. Bella76 had FEC, as did I. The "E" in FEC is Epirubicin, which is an anthracycline. (In the U.S., Adriamycinin is the anthracycline that is more commonly used for HER2 breast cancer). In Dennis Slamon's 3,222 person trial, he compared an anthracycline containing regimen for HER2 disease to one that did not contain an anthracycline. In tumors that were larger than 2 cm, there was a 3% survival advantage to taking the anthracycline. I don't know if it would make a difference given the aggressive nature of your tumor. Some M. O.'s are loathe to prescribe it because of the associated cardiotoxicity. There is also a tiny risk of leukaemia. However, anthraxyclines are widely used in Canada, Australia and Europe for Her2 breast cancer as the benefits are perceived to outweigh the risks. See the study here: http://www.nejm.org/doi/full/10.1056/NEJMoa0910383#article.3. Can you go to a leading research/NCI hospital to get a second opinion or treatment plan? I had a friend who went to a hospital in NYC to get a treatment plan that was implemented at our local hospital.
4. If your insurance won't cover a second opinion, can your doctor call leading breast cancer medical oncologists to get their input (if she hasn't done so already)? Perhaps you could call? You have nothing to lose by trying. Some of the names that come to mind are:
Hope Rugo
Sara Hurvitz (UCLA, she is Dennis Slamon's protegé)
Eric Winer (Dana Farber--or someone on his team)
Sandra Swain
5. There is a forum at www.her2support.org. There is a woman who posts there called "Lani" who is extremely knowledgeable about Her2 B.C. Try posting your question there.
6. There are a number of research articles on trastuzumab (Herceptin)resistance and strategies to overcome it. Here is one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4811269/ and here is another: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC42438...
If you have not yet added some other form of systemic therapy to H and P, I would push my M.O. to do so quickly.
Again, what you have described is surreal, and I am so sorry that this is happening to you. Sending my very best wishes your way.
-
MissRosie I hate that your going through this your in my thoughts sending good, healing thoughts your way.
-
MissRosie:
I just found this interview with Dr. Ian Krop of Dana Farber in Boston titled "Managing Trastuzumab Resistant breast cancer": http://www.medscape.org/viewarticle/576524
He is quoted as saying, "...there are patients with metastatic disease whose disease progresses despite trastuzumab in the first-line setting and yet demonstrate a good response when trastuzumab is combined with a different chemotherapy in the second-line setting". I would call him (or ask your MO to do so) and find out what chemo combination he has used in the second line setting that has yielded good results.
It seems to me that if the first shot at systemic therapy didn't work, you should quickly move on to the next. Her2 positive, hormone receptor negative, breast cancer has been described as a brush fire, in that it moves incredibly quickly. (I note that you are only weakly ER positive.) My tumor blew up between MRIs that were six months apart. My utrasound measured it as 1.4 cm, but it was 2.1 cm when removed 13 days later (there was likely some distortion, but I also think it grew significantly in this short time frame).
Stephanie
-
This will probably be my last post, because I'm obviously terrible at this forum thing.
Suggestions from here are getting printed and given to my oncologist, something I wasn't able to do earlier because I was essentially brain-dead from radiation. Thank you all so much. She has a plan, but given that so far chemo hasn't worked well, we could use all of the Plans C, D, and E we can get.
I'm more or less being treated by a committee. Any time a major decision needs to be made, my oncologist brings it up at the next meeting. Everyone knows my case, even if they don't know me.
Radiation worked fairly well, the only complication being that I'm allergic to Silvadine, and the combination allergic reaction and radiation did a number on my skin. I also slept most of the day as well as night. It did much better on the cancer. I still have some exposed tumor, and a nearby hole in the skin that leaks fluid, but the tumor shrank a little. My breast surgeon says she can probably close the wound now, and if she can't, it's just skin grafts. We find out next week. The tumor fever is in overdrive, but the tumor is coming out soon. Between that, the physical discomfort, and the constant dressing changes and TLC the thing needs, I can't wait.
That first round of chemo did more damage to me than the cancer, and I'm not recovering anywhere near fast enough. We're not even sure I'm strong enough for surgery, but given that the cancer has already broken through the skin, we don't have a choice. We have to get it out while the surgery is still relatively simple. We're also not sure I'm strong enough yet for more chemo. That's another problem. I didn't go into this healthy, and my cancer is insane. We've had the devil's own time trying to figure out what steps to take and when, in part because of my already weakened body. Every decision is a calculated risk. We don't seem to be getting it right very often, but when I think about it, I'm not sure there is a right. We could have gone straight to another form of chemo, but that risked my body failing beyond repair, or the chemo failing and the tumor getting even larger than it was when we stopped. And so on. Even hindsight isn't clear to me at this point.
Bloodwork to check for activity with my old disease came up faintly positive, for the first time in years.
A re-run of the staging tests found a brand-new nodule in my lung that picked up the contrast dye. I'm well aware that this could turn into a disaster very soon, or we could find something that could hold it off for years. No way to know from this vantage point, so I'm going to spend as much time with my son as I can, and see if I can do something productive while he's in school or at work. At the very least, I have a pile of photos that need organizing before some poor fool has to try puzzling out where and when things happened. I've done the death march before with a previous chronic illness that thankfully failed to kill me, and I know from experience that this is better than things like support groups. I'm a profound introvert. Groups of people are exhausting, but projects are energizing.
Some things I've learned that might be helpful to others in this boat:
Tumor fever doesn't respond well to Tylenol, but responds fairly nicely to naproxen. I still have temperature fluxuations and mild sweating, but I'm not hitting 103 F every night anymore.
Tube tops work really well to hold dressings in place. They offer no support, but I was so large going into this that my bras were too expensive to replace as the tumor grew, especially knowing that I was going to be boobless soon anyway. They do offer compression, and it takes a very restless night to knock the dressings out of place.
The absolute best remedy I found for severely radiation-damaged skin is roughly equal parts skin-friendly silicones and liquid lanolin poured into the palm of your hand, rubbed between both hands to mix, and applied liberally. The easiest way to buy silicones, believe it or not, is as intimate lubricant. Look for something that's mostly dimethicone. You can add a few drops of glycerin to the mix, too. The result is sticky and smells like sheep, but works like magic, much better than Aquaphor. I also used a daub of bacitracin zinc ointment to places where blisters had broken or the skin was bleeding. I needed painkillers to cope with the skin damage until I came up with this, and both the radiation oncology crew and my surgeon are very pleased with it. It also does nice things to dry hands, if you can tolerate it. And for heaven's sake, check every ingredient on the inside of your elbow before you use it! I can personally attest to the horror of combining an allergic reaction and radiation. The steroid cream they give you for the radiation will not hold that disaster off for long, and you will be stuffing your bra or tube top with abd pads to deal with the oozing and bleeding until radiation is over. For a while, caring for my skin was worse than caring for the ulcerated tumor so always, always do a spot check!
Thank you all again for all of your help, sorry about the novel I just wrote here, and I wish everyone the best on their journey.
-
Hello Miss Rosie
You are great at this 'forum kind of thing'. This is the whole idea that people can share how they are feeling. Many - if not most - most people on this forum have either experienced cancer or who have friends or family who have or people who want to help.
There are many people who are surviving cancer nowadays and getting on with their lives. It may take time - but it is possible.
I have a friend who is nine years out with your stats and expects to have many more.
Why not you?
Alice
-
miss Rosie ....I am sending you every good wish and every healing vibe. Like Bella suggested can they consider another type of chemo? The FEC that Bella got or the Ac that minus two got ? Shoudl they recheck the HEr 2 ? Are you really triple negative and maybe you need an anthracycline that you haven't seen yet ? If indeed her 2 positive shoudl they at least keep going with some her 2 agent while th3y are figuring things out ? Your oncologist should discuss with Eric wines at Dana farber if they haven't done so already
Keep your spirits up, keep your projects going, spend time with your son.....we are all rooting for you here
Healing hugs
Tara
-
Okay, not last post.
Alice, I might very well live for years if they can get this under control, but I don't know. Nobody does. I could also die on the operating table in a little over a week, since this is a more difficult surgery than usual, and I will have naproxen in my system, which increases my risk of bleeding. (It's been okayed by the surgeon; she'd rather deal with that than with my 103F temps and 130+ heart rate when I'm off the stuff.) That's a lot of why I think it's probably best to live as if I have only months, or even weeks. It's really not a bad thing to think that way. It narrows down what's important. Timor mortis conturbat me, the fear of death disturbs me, because death is natural, and fear is paralyzing, but when one gets caught up in it, the fear seems more natural.
Tara, the tumor actually grew through HER2+ therapies, almost as fast as it did without any chemo at all, so there was no point in continuing them. I also needed a break from chemo, because of the other drugs. I got hit very hard with a combination of side effects and complications, to the point where I still haven't recovered enough. I was definitely HER2+ when the original biopsies were done. My sister, who has been somewhat involved in cancer research, thinks the tumor is probably not homogeneous anymore, if it ever was in the first place. Once the thing is out, they can have another look at its genetic makeup. However, the rapid growth and spread is consisted with HER2+ cancers. Someone earlier said brush fire, and I'm finding that apt. Let up on this thing even for a week or two, and it goes bananas.
We are going to do more chemo after surgery. My doc has something she wants to try, and there may be other things we can do as well about the lung nodule.
My oncologist isn't incompetent, inexperienced, or unwilling to seek advice, nor is she unresponsive to input from others. She's just in a situation she's never been in before, a situation I gather from my own research is poorly understood even by those on the cutting edge. It's possible to do this, but there's some guesswork and luck involved. That's why I'm so grateful for all of the responses. Our guesswork will be more informed because of them.
-
miss rosie ----you have an amazing attitude. Your sister makes a good point about the tumor being heterogeneous ...one thing that comes to mind is that at memorial sloan kettering all tumors have a full genetic analysis called IMPACT testing and then that testing can determine if people are candidates for any new drugs targeting those mutations
https://www.mskcc.org/blog/new-tumor-sequencing-te...Hopefully the link above comes through . I wonder if your oncologist can look into this IMPACt testing for you ?
Hugs
Tara
-
My heart bleeds reading threw this thread. I guess this is something we all fear, the growth not being stopped. I had no movement of my mass during chemo before operation and it was huge, grown during a short period in-between mammograms. My onc called it a "borderline case" monitoring to see any growth during chemo and explaining they would take it out ASAP if that happened, well it did not change so I continued the treatment and perjeta and they found it had shrunk after the operation a third of its size, the rest was scar tissue of dead cells..I was in a complete panic so I am praying for you and the doctors to get this under control and will keep this as my favourite subject. A friend of mine was triple negative and had a very poor diagnosis with mets in bones and liver, she started on a kerogen diet and after further analysing they thought her cancer had changed and was all of a sudden hormon sensitive even if they could not determine this from the beginning. Despite being told she only had a few months left she is still alive and today NED. I hate this illness so much.
-
Hi.
I thought an update might be appropriate, now that we've had a look at the whole tumor instead of just part of it. Turns out that I'm definitely HER2+, but my cancer is metaplastic. My sister called it months ago. The cancer makes four kinds of cells, including clear cells and squamous cells. We just got really unlucky on the biopsy, which found only one kind of cell.
DNA testing on the tumor is in process. Sadly, so is metastasis. Either the cancer has spread to my lungs and is being even more aggressive there, or I have some kind of nightmare lung infection, according to my last PET. Both are possible, since I am really sick right now and I'm not sure why. My son thinks I have C-diff again, based on my behavior, but I'm less sure. I see my GP Thursday to start sorting it all out.
It's nice to have an answer. Metaplastic cancer is often more aggressive, chemo-resistant, and otherwise poorly behaved. The reason my oncologist has never seen anything like this is because she's...well...never seen anything like this. It's extremely rare, not just metaplastic cancer, but HER2+ metaplastic cancer.
I'm also recovering from a double mastectomy, no plans for reconstruction. Radiation did its job; the tumor was small enough to remove without needing skin grafts to close the wound. The skin on that side is thick and slow to heal, but I'm glad I will not spend what's left of my life weighed down by those dang-blasted J-cup boobs! My new figure is the one bright spot in all of this. No more button gape. No more throwing my weight forward trying to stand up out of a chair. I can just stand up like a normal person. In this respect, I'm having the time of my life. My surgeon said that my healthy breast was so heavy that between it and Million Pound Tumor Boob, she was physically tired when she was done.
Also, for reasons unknown even to me, it has become deeply important that I make real progress in Zelda: Breath of the Wild. There are 120 shrines, and I've found maybe half of them, I think. I haven't finished the Major Test of Strength ones because I keep losing. I also still can't fight Lynels. I'm too old, too sick and have too much tendinitis in my hands for this game. Knowing that I'm probably dying makes me care a lot less about all of this for some reason.
Anyway, thought I'd let you all know that we now have a much better understanding of what's going on, even though it doesn't seem to have improved my prognosis. My cancer is no longer a mystery, it's a fluke. Somewhere, a dice roll came up snake eyes, and here we are.
Thanks for your caring, suggestions, kind thoughts, and encouragement, and I wish all of you the best possible.
-
Thank you for sharing the update...I know many of us have had you in our minds. I'm glad you finally have answers and will pray that this will help the doctors form a good plan for your treatment moving forward.
The Major Tests of Strength in Zelda are difficult. You need a good weapon and lots of hearts to achieve them. You can find a cheat sheet online that will show you locations for all of the shrines if you're finding them hard to locate.
Love to you.
-
MissRosie
I am sorry to hear this news for you! Keep up the good fight. I met two people in the last month that shouldn’t have made 1 year and they are here 12 and 7 years out!
NEVER EVER GIVE UP!
Love to you
Dani
-
Thanks, Kimm! The first few times I went in, I had a handful of hearts and no Master Sword. Now I have the Master Sword, and just over the number of hearts needed to pull it out. I'll probably go after those shrines again after I get a few more heart containers and get better at flurry rushes.
I finally took down a Lynel, a weak one, but with my crap flurry rushes, it took forever.
I'm a shameless user of the internet for gaming help, especially now that I've passed the halfway mark on shrines. They're starting to be buried in mountainsides, the outcome of weird quests, etc. I also use the internet to help me solve shrine puzzles, although sometimes that results in me saying, "Jeeze, are you kidding me? I not going through all that!" And then I find a better solution on my own.
Dani, maybe they'll be able to use the genetic analysis to pull a rabbit out of a hat. I certainly hope so, but I'm trying to stay low-grade pessimistic for my own sanity. I'd rather be surprised by life than by death. I've found myself thinking, after something goes well, that yeah, I just might survive this. Then we have another serious setback and I have to cry it out yet again. It's a really bad cycle for me, which is why I keep trying to take things a day at a time, and keep the idea that this can kill me close at hand. It seems weird and morbid on the surface, but what it does is keep me in closer touch with my life. I'm living for now, not a future that might or might not come.
My son's job and university work aren't being affected by my cancer, which is wonderful. Part of his secret is to take things a day at a time, and I'm trying to learn from him. From his point of view, his Mom isn't dead today, so there's no reason to dwell on the possibility that she might be dead tomorrow, or try to draw strength from the idea that she won't die at all, which might not be true. He lives in the now, not in the future. I'm a worrier, so it's harder for me, but I know from watching him how well it works.
I've always said that I learned more from my child than he ever learned from me, and it continues to be true.
-
MissRosie,
I am relieved to know that you are receiving good care and have faith in your medical team. Your son sounds like he has incredible insight and fortitude. You must have done a wonderful job raising him. I wish you all the best in the battles you face, be they virtual or actual.
-
Except the estrogen positive we are in a similar situation. I went through all six treatment sessions only to find out that the lumpectomy we had planned to do went out the window as 3/4 of my right breast was involved. Just got diagnosed with local skin mets across my entire chest area. The frustration and bewilderment are real! MissRosie hugs and prayers for you.
-
Hi KittyLady-
Welcome to BCO! We're sorry you find yourself here, but we hope you find this to be a place of support. We're all here for you, please let us know if you have any questions!
The Mods
-
What are local skin mets? and how did you discover them?
On a positive note on this thread the miracles of Herceptin for this type of cancer seems very real but I have read there are other "weapons" available if this one does not work. What kind of treatment is your onc suggesting you now Miss Rosie? Chemo? or other targeted therapies?
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team