Are you currently (or have you been) in a Clinical Trial?
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Here is an interesting discussion about how metastatic Her2-positive breast cancers can be treated as chronic (and possibly cured, for a fortunate few), part of the reason is that Her2 is the main driver of every tumor, whereas for other MBC subtypes there is a whole panoply (or at least a few different genes) that can drive growth, so if one is knocked one down there are others that can take over:
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@cure-ious It's all luck-I have no idea why I have done so well on Ibrance but am grateful. I don't have the ERS1 or Pi3KCA mutations so far. I think maybe the MSM has helped me but who knows? You seem to be doing pretty well yourself. I, like many others here, are grateful to you for sharing your expertise.
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Hi cure-ious and Chicagoan,
What is this MSM you speak of and how is it (or how has it) helping you?
I just started Evenity for bone strengthening. I have pretty bad Osterporosis in my spine. I’m nervous to add anything since I’ve been stable for so long but my endo talked me into it. (I did have a little accident that resulted in fractures in seven vertebrae, so that’s probably why).
I’ve been eyeing Dose, which you’ve probably seen on social media. In the one hand, I know it’s probably just as effective as drinking juice. In the other hand, the ingredients turmeric, ginger, dandelion and milk thistle are pretty well accepted in the oncology community. And it promises energy, which I would give my right arm for!!!!
cure-ious, it’s so good to see you here. I’ve been looking for you but don’t come on here a ton and have found it hard to navigate the new site. Hope you’re doing well1 -
@jensgotthis Fractures in 7 vertebrae! That sounds painful. I thought we were not supposed to take turmeric with Ibrance b/c it used the same pathways. I usually take ginger capsules every day. This is the MSM that I take-I take it for my hair but it may also reduce inflammation and help protect against cancer. I'll have to check out Dose.
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Dear cureious, I have read several articles like this but non of them were so thorough. There's so much hope in such texts - scientists and doctors cannot even imagine what hope for us does. Thank you! Saulius
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Chicagoan,
Yes, I'm worried about the turmeric too. And it's supposedly a very high does in the product. I am unlikely to try it. AGain, I don't want to change much since it's been working for awhile. Thanks for sharing the MSM product though. I'll read more about it.
Have a good day!
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@cure-ious I take MSM but now I'm wondering about whether it raises glutathione to an "excessive" level? It all seems quite complicated. I need a PhD in cell biology (rather than English, my field) to grasp this!
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Tough Old Crow, My PhD is in biochemistry, my area transcription mechanisms, and yet none of that would give me a clue as to whether taking 3g of MSM would have any effect on glutathione levels in the body either!
Saulius, I really enjoyed that story too, they put the discussion within the historical timeline so you can appreciate the progress that has been made and future things coming for Her2. I keep hoping there could be a bispecific antibody for Her2 and PDL1 to target immunotherapy and reduce its side effects, and maybe could be used for Her2-low cancers also, but haven't seen anything on that yet- or maybe we can get a vaccine for metastatic Her2? A lot of irons in the fire these days!
Jen!!! MSM is a supplement I was taking to try to fix my nails and hair after such a long time on anti-estrogens. It also has, in the lab, anti-cancer activity, inhibiting Stat signaling in ER-positive breast cancers, and reducing cancer cell migration In the lab, it synergizes with tamoxifen so the data in lab expts is all postivie for cancer, and FDA considers it safe.. It is also an anti-inflammatory also, so helps with arthritis pain. This recent story that glutathione pushes metastasis brings up a hypothetical problem,so we need some data in people.
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Hi all,
I'm still mostly lurking in the background, still on break from Enhertu. My last scan in July didn't suggest any new progression but after 15 years of progressions and treatments, it's a mess to read. I tell you, I don't miss going to the cancer centre.
I'm poking my head up to second Saulius' comment about the HER2+ article - thanks for sharing cure-ious.
I've also been amazed to read about the latest new crop of potential therapies - thank you to everyone for making this thread so informative.
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Hi NewGardener,
This is starting to look like a really amazing drug holiday you've got going, am I reading it right that you are now 6 months off all meds?! What do you think is going on? As I recall, your cancer has both PI3KCA and ESR1 mutations? And now more than a year on Enhertu, even after trying a couple of chemos, its really remarkable. I'm sure you have plenty of issues, but I imagine this much time off treatment has done wonders for your mental health, sleep, appetite/digestion, all that good stuff?! I wonder if your MO has had success taking people off Enhertu while still stable and them being able to stay stable for an extended time like this, or what criteria led to you going off treatment? I'm sure I'm missing something…
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I thought this new bi-specific Ab for Her2+ and Her2-low cancers was interesting, this is from a session on new drugs at the ASCO 2025 Mtg:
ABP-102/CT-P72: Bispecific T-cell Engager in HER2-expressing Cancers
Adam Pelzek, PhD, of Abpro, explored the science of ABP-102/CT-P72, a bispecific T-cell engager that targets the tumor-associated HER2 antigen and the T-cell receptor-related CD3 complex, and is designed to promote T-cell activation only in the presence of HER2-overexpressing cancer cells. In xenograft studies involving HER2-positive tumors and human immune cell supplementation, ABP-102/CT-P72 controlled the growth of both HER2-overexpressing tumors—demonstrating two-fold improved tumor control compared to a biosimilar HER2 x CD3 bispecific antibody—as well as HER2-low tumors. The therapy also had low off-target toxicity in monkeys, paving the way for trials in patients.
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And another one covered at ASCO 2025, maybe for your (distant) future, NewGardener, after Enhertu and the Kat6 trial and whatever else, this one is at 3 places in CA:
RO7567132: Bispecific Stromal- and Vasculature-targeting Therapy in Breast Cancer
Meher Majety, PhD, of Roche, recapped preclinical efforts involving RO7567132, a bispecific antibody designed to target FAP and lymphotoxin beta receptor (LTBR), which is expressed on a variety of cells in the microenvironment and the vasculature, and sensitize tumors to immunotherapy. In mice, RO7567132 turned immunologically “cold” breast cancers “hot” and improved responses to immune checkpoint and T-cell engager therapies, and a phase I trial is evaluating a combination with atezolizumab (Tecentriq).
There are no data as yet about how effective or tolerable this bi-specific antibody is in patients, but worth keeping an eye out
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Hi cure-ious,
I asked for a treatment break after my March scan, which was in the scheme of things positive (no apparent active disease among the leftover damage in my pleura, nothing in the liver), because really I was tired. I am fortunate to be a patient who tolerates things well from the medical perspective and whose blood counts are always good enough to go forward with treatment, but mentally I was tired of it all.
Over these past 15 years that while I've been fortunate that the cancer cells respond to almost everything initially, after a while, they stop responding (thus 15 progressions). So my theory, not condoned by my oncologist , is that the cells are actually very indolent, and that the drugs have stopped working way before the progression shows up on scans. So why keep taking the nasty chemicals after the response but before progression?
My oncologist was okay with a break for quality of life - that 15 years of treatments (really 20 because I took tamoxifen the five years between early stage and mets) take their toll. He's had other patients take breaks, but shorter. He's had one go to longer cycles of Enhertu. We discussed a bit about what other cancers might be doing clinical trial wise about breaks. We talk every month or so and keep kicking the can down the road. I see him next week - we'll see what he proposes but I'm hoping for another month and another scan. I suppose I'm taking my chances that when progression shows up, there will be time to jump back into a saddle and that the treatment will work.
I'm feeling better. Still tired, but not bone tired. I take fewer monster naps. I get more done in the day and in a week. But I am still less energetic than my friends. My blood tests are totally normal (underneath it all I guess I'm a healthy person?)
Meanwhile, all these new drug types make me hopeful that when I need to get back at it, there's will be things to try.
Sorry this reply turned into an essay!
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NewGardener, That is all fascinating to me! I think with completely normal bloodwork (!!!), even the red cells and white cells all in normal range, the tired-ness is not due to anemia, which is such a relief.
Its interesting that you think the drugs have stopped working but the cancer has yet to progress, whereas it could be the cells were put to sleep and are haven't awakened yet, but when they do they will of course still be responsive to the drug.
Do your tumor markers track with progression? If so you could easily just wait for TMs to jump up and go back on Enhertu, and have a backup plan in your pocket in case they no longer respond, but if they are inactive on scans its not likely they are mutating away to develop resistance, right? What does your MO have to say about such a crazy thing as this? Six months is a LONG TIME!! Hopefully you gradually drift back into normal shape, is there any bloodwork that could be missing (like thyroid or other hormones) that could give them an idea about what is causing the fatigue, because normally I guess that would show up somewhere on the CDC (immune cell) panel they do… Although, it could also be some residual effects from inflammation, or mitochondria are slowly recovering, hopefully you are sleeping well because taking away all the stresses on body and mind could lead to much deeper sleep and repair of whatever is causing it. I will be really interested if this goes on, how long it might take to feel fully recovered or much closer to normal! What a great year for you!!
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@newgardener , your situation is really very uncommon. I am so thrilled you managed through so many stage IV treatments over years, and you have even developed the "6th sense" on how the disease behaves. You really are exceptional, as a patient, and as a person, and we are blessed to have you here. You are just another proof that human body is extremely complex, and no one really knows at the beginning of such terrible journey, how it is going to go. And not knowing… gives us hope. As for now, I wish you to be able to "rest" without any drugs for as long as possible. Many hugs, Saulius
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Thanks Saulius and cure-ious for your supportive comments. I'm past thinking about bucket lists, but I have been trying to squeeze more of the good life (friends, nature, dog walks) during this period.
Cure-ious - Over the past 15 years, and with 8 oncologists, you'll be surprised we've never tracked any tumour markers. I never asked for it because I figured why borrow more worry. The every 3 month grind of CT scans (I've had over 60!) is enough. Also, because my mets have mostly been in the pleura - they are easy to see when they show up.
In hindsight, it would be helpful information if I wanted/needed to reduce the number of scans. But for now, I won't get ahead of myself.
Thank you for mentioning about considering what else might be causing my tiredness. I'll raise it with my onc this Wednesday.
Take care everyone.
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Hello everyone.
Welp, it's been a wild ride in Cancerland for the past few months since I started Dato DXD (Datroway). I think I covered most of it in prior posts, but basically I've been through pseudo-progression, mystery liver pain, a different side effect every round, and mixed results (liver growing, nodes shrinking).
After Round 4, I was feeling the same fatigue I usually feel on Day 4 (Monday), except instead of getting better as time went on, I started to feel worse…I went from 15-20 minutes of stamina (activity) to short of breath, no stamina at all, and couldn't really function by Saturday. I checked my temperature, drank extra water, but nothing was working.
So here's the part where I'm a dumb*ss…
Saturday I decided that I would call the oncologist and see if I could get fluids on Monday. For some reason I was convinced that it was dehydration. But then Sunday, I finally decided to check my O2 after walking from the kitchen to the living room and being totally winded—it was 84. So off to urgent care we went.
They took one look at me and called EMS to take me to the ER.
I was diagnosed with drug-induced pneumonitis and a small pulmonary embolism in my left lung. Mind you, I had DIP before about 3 years ago, and yet it didn't occur to me that I was having a lung problem, not a normal stamina problem. What a dummy.
I think the problem was that the only side effects I was really focused on were the mouth sores and dry eye since those are the most common. I'm sure I read pneumonitis was a possibility, but it wasn't top of mind and I didn't even consider it.
Long story short, I spent 13 days in the hospital with Grade 3 pneumonitis. In the beginning, they had me on 8L so I could make it to the bathroom (10ft away) without going under 85 and I was still winded when I got back to the bed. It was scary for the first 8 days because there was no improvement at all. On day 9 they switched me to oral Prednisone and I started to feel better. They sent me home yesterday with oxygen (which I'll probably be on for a few months at least), home physical and occupational therapy, and a long taper from Prednisone.
So my self-diagnosis record is now something like 0/2,000. You'd think I'd learn to provide the doctor with the information and let him decide what I have. Dehydration…sheesh! My lungs were closing up and I thought water would help. So much for being a trailblazer for a new drug—more like a guinea pig.
Anyway, since it tried to kill me, I'm off Datroway. I don't know what's next—we had discussed Talzenna as the next line, but I don't know if the pneumonitis changes that, or how long I have to wait and heal before we start it.
My biggest concern, besides breathing, is that now with 2 cases of pneumonitis, I'm basically ineligible for 80% of the trials out there, maybe more. So there goes my Hail Mary pass when I'm out of treatments. Sigh.
I'd say I've learned my lesson, but I can't help but think being wrong about these things is coded in my DNA. 🙄
That was a long one…thanks for reading!
Good health and healing to us all.
CBL
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@cblaurenceauthor Thank you for your feedback. I'm sorry that this treatment caused you all this inconvenience. Your message is important because I also tend to self-diagnose and miss the mark, or wait and tell myself that it will get better on its own. Last time I thought I had a fever from a new treatment when my oncologist simply told me that I had a bad case of the flu and he was right...so I think it's important to remember that all symptoms, discomforts, and pains deserve to be mentioned to the doctor.
I hope we can quickly find you a new treatment. Thank you again for your message, which is so important for all of us.2 -
As embarrassing as it is, I’m happy to share my experience and you found it useful. Can’t be afraid to admit to being a ding dong if it helps someone else, and I expect this won’t be my last ding dong post. 😁
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Oh, CBL, everything you were doing was completely reasonable! I'm impressed you even thought to measure O2 levels, I probably would have thought maybe it was heart problems. With respect to trials, I thought pneumonitis history was most a problem for immunotherapy trials in particular? And anyway with all you are going through right now surely you wouldn't want a trial, we all will be very interested to see what your MO recommends..
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@cure-ious I guess we all misdiagnose from time to time. Thanks for the validation—I've been kicking myself for weeks so maybe it's time to let it go.
As for trials, I'm not sure if it's mostly immunotherapy. Seems to me like I see it quite often in the exclusions, but I might be hypersensitive because I've had it once before.
No, I definitely don't want a trial right now. I was saving the trials for after I'm out of treatments or close to it. The Talzenna was next on our treatment list, but I'll know for sure on Friday.
What a month!
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oh my goodness CBL ❤️ wow what a ride. Im so glad you are breathing and stable. Yes please feel validated and if possible, stop kicking yourself. Cancer is doing enough of that ! Lol... Cancer land is not for the feint of heart… surely demands presence and awareness, and community . And I think a sense of humor as we can! So first off hugs 🤗 cause I’m a hugger. Second, I hear good things about talzenna.
I’m waiting on a trial for skin Mets at MSK that might open in January,I’ll keep you all posted. I just missed the last one using a light therapy and a Kintara developed drug , closed due to federal accrual budget cuts..it closed before I could join…phooey! I’m being screened at MSK for any matches for early drug development and might go on Irinotecan while I wait. We’ll see I find out Oct 8 what the next line is we try as my skin Mets triple negative is proving, bit no other progressions or mutations. What a journey! Love to all.. knowledge is power as is love.
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@rlschaller I've got my fingers crossed for you and the MSK trial!
Comforting to know you've heard good things about Talzenna. Someone else had mentioned they had a friend who was doing well on it, so I hope I'm able to start it soon.
Keep us posted on the next line.
Hugs back,
CBL
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@cblaurenceauthor, I am the friend you heard about from Kris (KBL) on Talzenna. I have been on it since Dec 2024. I have a genetic BRCA 1 mutation. Talzenna has been a breeze to be on. There were about 2-3 weeks of stomach upset/heatburn/mild nausea at the beginning, but after that it was really easy, no real side effects to speak of. My hair might be a little thinner, but that could also be because of menopause. Blood counts were low, mostly RBC, hemoglobin, platelets, etc. White counts and neutrophils did not take as big a hit with this as they did with Kisqali.
Unfortunately, after an almost complete response initially, my PET scan done just this morning shows new uptake in multiple bones, so I'll be moving on. I'm super disappointed, as I know others get lots more time out of PARP inhibitors.Maureen
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Hi @mozuke1
So sorry about the progression. I don't know what the average time is on a PARP inhibitor, but 9 months sounds really good to me. I could be totally wrong (probably) but either way, progression sucks and I feel you on the disappointment.
Thank you for the information about Talzenna. Good to hear it was an easy one for you—after the experience with dato-DXD, I'm ready for something easy! My blood counts are already low (RBC, hematocrit, and hemoglobin) and your message reminded me to ask him about an iron infusion tomorrow, so excellent timing. An almost complete response would be awesome so my liver can clear up and have some breathing room. Erubilin did the same although it only lasted four months, it allowed me leeway to do a few trials before my liver filled up again.
Thanks again and wishing you great success on whatever is next for you.
CBL
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Update:
Had my oncologist appointment today. No change in plan. Luckily, the steroid taper wasn't a problem, so I can start Talzenna ASAP (Tuesday).
I also mentioned trials and how the second bout of pneumonitis eliminates me from most trials. He said not necessarily and that UTSW has had a few good ones open up. After Talzenna, if my liver clears up enough, I'm happy to do another trial, so he'll be looking at that too.
I told him the circumstances of the beginning of the pneumonitis and how I should've gone in on Friday, but guessed wrong on the cause. I said, "I'm 0 for a million on self-diagnosis." He said, "I don't know, I think you're pretty smart." Awww…. Guess I can let that go now. :)
I am so so so glad I switched oncologists when I did. Dr. G and I have a much better relationship than my previous oncologist. He's willing to get creative (I said that's fine with me but no Ivermectin, haha) and think outside the box and include me in decisions—something previous doc would never even consider.
I lean hard on the researchers here on this board and other groups, so thank you for all the information and experiences. I'd love an extended run on this one with a great response…here's hopin'!
CBL
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Wow, CBL, Dr G is a real "keeper"! And he didn't even fuss over the pneumonitis you were worried about for future trials - - isn't it great when someone can take a burden off your shoulders over things like that!!
Talzenna works differently than the other PARPi and is like 100x -1,000x better than the other PARPi at trapping PARPs at the site of DNA damage, which likely contributes to its much stronger potency, hope you go a long time on this treatment!!!
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wishing you a long and comfortable run on Talzenna
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Hi @cure-ious and @eleanora
Yes, Dr. G is definitely a keeper. He's such a turnaround from my last oncologist as far as open-mindedness and thinking outside the box. To be fair, my last oncologist was in the Navy for twenty years, so maybe she's just used to following rules and protocol. I'm grateful for all she did, but for this part of the journey, I needed someone different.
Cancer aside, Dr. G even bought one of my books and started reading it! I didn't think doctors had time for recreational reading so I was very happy to hear it…until I went down the "Oh hell, he's got my book! What if he hates it? What if it sucks?" rabbit hole, haha.
I've read some great real-world posts about Talzenna, so I'm once again cautiously pessimistic. I have a somatic BRCA1 promoter methylation, not inherited, so Dr. G said it might not work the same. I tried to find results that mention it but didn't get too far. But even if I had half the success, it would be well worth it.
All I can do is forge ahead. Looking forward to tomorrow and my first dose!
Health and happiness to all,
CBL
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ok @cblaurenceauthor which of your books do you love the most that you would recommend to start with ? I love historical fiction and mysteries ! ❤️❤️
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