Are you currently (or have you been) in a Clinical Trial?
Comments
-
@cblaurenceauthor .Please don't blame yourself so much. Like all of us here, you're trying to stay alive and doing the best you can. I'm so sorry you're in the hospital and I hope you can come home soon. Thinking of you during your appointment with Dr. G. You'll finally get more answers to your questions. Sending you lots of positive vibes.
1 -
CBL, Are you kidding, WTH, this is a lot to process, with all this stuff swirling around you. And that's the whole point of posting here, when you want to work through what is happening, and figure out the best next step, or make a considered decision among various options. I'm glad the hospital is keeping you safe while they are figuring out what you need, and that you can get back on track w/Talzenna soon.
1 -
@soldanella @cure-ious & everyone:
Aww, thanks ladies… beating myself up is my greatest life skill, haha. Too bad it's not marketable, I'd be rich!!
So it turns out my situation is more dire than I thought. The final word on the stent procedure was that there was too much cancer in the liver to make a difference, so they're not doing it.
When the attending visited me yesterday on rounds, he said he had to talk to Dr. G and ask if treatment was possible or if I should be released to hospice. WTH? That information should've come from Dr. G personally. I said it that's the case, I want to go home today. He hesitated, and said maybe. I was like, No maybe, I want to go home.
So I was sleeping and missed a call that morning from Dr. G. I called his cell phone, and we talked for a while about what we can do. We decided on PARPi (Talzenna) and Keytruda (just as cure-ious suggested!) because we didn't give Talzenna a chance (I was off it more than on because of side effects) We did reduce the dose a level (1 to .75) of Talzenna and maybe reduce Keytruda too. He didn't say it outright, but I think this is definitely my Hail Mary and if anything will buy me a few more months. I'll take it.
While I was on the phone with him toward the end of our conversation, the attending called in so we hung up. About 20 minutes later, the nurse came in with discharge papers. Yay! I was out within an hour, so whatever Dr. G said to him lit a fire and I was outta there.
I still don't know how I got this bad and didn't know about it. I will definitely address that on Friday. It's crazy to me how that could happen. I must be in denial and not processing yet, or maybe I'm numb. I tried to ease my father into the severity over the last two weeks, but he was somewhat blindsided as well. I guess no one can ever really be prepared for it, but at least now he knows and has a little time to adjust and make plans to come out here when it's time.
Anyway, it's kinda here nor there at this point. I need this to work at least a little bit and fast because I'm already showing symptoms of a liver shutdown.
That's the unbelievable crappy news from here…
Thanks again for all your support and knowledge and understanding.
CBL
5 -
Sending warm thoughts and healing energy. Fingers crossed for the success of the Talzenna/Keytruda combo.
1 -
@cblaurenceauthor Prayers (if you accept them) and warm wishes for success with a new plan of action. You mean so much to us. I've read a number of your posts and you are usually spot on and always supportive of others. And your sense of humor is a zinger. Friday just has to be a good day and answers for you..
Laurel
0 -
Thank you @eleanora and @irishlove
I appreciate the warm thoughts and prayers.
One other thing Dr. G said was that he wanted to inject chemo directly into the tumor, but he didn't know if "they" did that. I want to know who "they" are and if he found out if they could do it or not, because that's exactly what I'm looking for. I don't think I have time for Talzenna/Keytruda to work and this would be more direct.
Looking forward to the appointment tomorrow. I don't have an infusion appointment set up yet for the Keytruda which makes me a bit nervous thinking he may have changed his mind, but that could just be some healthy paranoia.
Thanks so much for the support, everyone…you don't know how much I appreciate it.
❤️CBL
1 -
CBL, I am stunned too, WTH?! I have to say I have noticed with a few people on this board who have gotten into bad shape yet their doctors seem to be slow-walking appointments, and maybe that is a natural response when they don't have any cards to play, but it leaves people desperate and hanging on, and tho you are not in that situation it's still right to insist on a clear picture and work to give yourself the time you need to figure out what to do.
A friend of mine in Berlin w/ovarian cancer did peritoneal chemo which was helpful, and that was probably ten years ago now, but otherwise I'm not familiar with it. However, the Keytruda-Talzenna combo will work fast and is systemic, and people taking immunotherapy have sometimes been able to tell it was working right away, with the added benefit of the immune system hunting down the cancer 24/7 with the potential to really hit it hard. Good luck tomorrow
0 -
Hi @cure-ious
Ooh, fabulous to know it can work quickly. Yay!
So I think I figured out that "they" are interventional radiologists and the why they might not be able to do it is the liver has to be in good enough shape for them to try it. The Child-Pugh score needs to be an A or B. I believe mine is still a B, but I don't have the brain power to figure it out for sure right now. I will before tomorrow though.
Also in the bummer pile, I didn't have an infusion appointment set up yet, so I called the office. Nurse had no idea I was supposed to start tomorrow, therefore no appointment was scheduled for the infusion. He's trying to get me a first available chair, but can't promise. What the actual hell?
He's pretty good about working scheduling miracles, so we'll see, but c'mon people. Get it together already.
Will let you know how it goes!
CBL
0 -
CBL- Oops, I forgot- there are several reports out now saying that you need an anti-estrogen for Keytruda to work if the cancer is ER-positive or you have an ESR1 mutation, having active estrogen signaling seems to be a no-go for immunotherapy, I think it has negative effects on the tumor microenvironment, so get some Orserdu or Faslodex.
And then also there are other things that help immunotherapy response, which you can do before or during treatment, you could add on one thing each month and follow TMs to see if it helps: 1) the full-dose Covid vaccine (here the immune response to mRNA of any kind, and Covid vaccine is mRNA, made a huge difference in how long people responded to immunotherapy)- the Covid benefit was seen even if taken after or within 100 days before starting the immunotherapy; 2) SSRI anti-depressants, UCLA saw a big synergy with immunotherapy and dang some Prozac sounds nice anyway (UCLA: "It makes your T cells happy"); 3) the cholesterol medicine PCSK9 inhibitor, evolumab, is a self-inject pen and PCSK9 is a pro-metastasis protein, the PCSK9 inhibitor strongly synergizes with immunotherapy and also has a strong effect blocking new mets from happening.
I know immunotherapy is a long shot for ER-positive cancers, but its high-risk (ie, not working at all) vs high-reward (if it does work), relative to other options…
1 -
Did the nurse get you a chair? In your pocket during the infusion and your appointment.
đź’–
0 -
He did! It’s at 2:30 and I’ll be done with Dr G at 11:00 am, but I’ll take it. Maybe they have a reclining chair I can nap in. Or my sister will make a second trip which is a pain. But the important thing is I’ll get it today. Thanks for checking in!
0 -
Awesome, glad to see its moving fast now!
0 -
Hi everybody!
Saw Dr G this morning. As I suspected, if talzenna doesn’t work fast (like really fast) it’s time for hospice. He said it would be a good idea to start looking into companies now because it will happen fast and we need to be ready.My energy level today is horrible. My voice is gone, I had a dizzy spell getting into the car—almost like a seizure of some kind. I’m out of breath with the slightest exertion and my balance and strength sucks. I’ve requested fluids because my blood pressure is low 80/65
I asked him about adding an estrogen blocker and he said I’ve run through them all and they won’t help. We’re treating it as triple negative. I didn’t ask about the Covid vaccine but I think I could just do it. What can it hurt?
Anyway, I’m still processing and trying to think of how to tell my father. I’m not freaking out yet, but if my liver numbers don’t improve in three weeks, I will.
Thanks for the support. ❤️
3 -
Hi CBL, well if the cancer is like TNBC then anti-estrogen is not necessary for the immunotherapy to work. Of course you can get a Covid vaccine, and I'll put a link to the recent story out of MDA how much a difference it can make.
Im also very aware for me, that I have lots of fight that people want me to have when I feel good, but I'm not interested in that or many other things if I feel very bad, I just want everything anyone can do to make me feel better, and surround myself with as much calm and calm feelings as I can to try to be in the moment and take it. however it comes. I hope hope hope for the very best response, but getting all the help you can to get in a supportive space is only going to help that response happen if it can…
https://www.science.org/content/article/surprise-bonus-covid-19-vaccines-bolstering-cancer-treatment
3 -
@cblaurenceauthor sending love and hugs as you go through this part of your journey. A lot to process so quickly, but your intuition was spot on, and you are clearly doing the best you can as you can. And as others have shared already, I wish you find the comfort and support you need. Hugs and more love to you. ❤️
1 -
@cblaurenceauthor Really sorry to hear about this terrible ordeal, but thanks so much for sharing the journey. And I second everything others have said here.
1 -
@cblaurenceauthor My heart goes out to you. The news is hard to hear, but whatever happens with the treatment, the palliative care option is a good idea. Here in Switzerland we are encouraged to contact them as soon as a stage 4 diagnosis is made, even if the disease still has little impact on our general condition. This allows us to get to know each other, to define our objectives in order to be supported in the best possible way.
I fully agree with Curios' comments: surrounding oneself with calm and serenity is essential, and enjoying every blessed moment that sustains us.
I join others in sending you all my positive thoughts.
3 -
@cure-ious and others, have you heard of the EVOLVE trial that will monitor MBC cells as they evolve? Looks big. I'm not near any of the cancer centers conducting the study, but I am wondering if it is worth joining. My cancer is currently well controlled with Kisqali and letrozole, but who knows when that will change. Is it worth knowing early on? My own oncologist has the opinion that an extended overall survival hasn't been proven yet with this early mutation detection. https://medicine.yale.edu/news-article/researchers-aim-to-adapt-metastatic-breast-cancer-therapy-as-tumors-change/
0 -
Hi Tough, I have heard of it, and in a way its how the field is evolving anyway, so if TMs start going up, even if scans are fine, then the MO may order a new Guardant test because it takes awhile to hear back, and will show if the cancer has acquired some new mutations, and if something is actionable one might decide not to wait longer if there is some other therapy that can be added or switch to something different- the question here is if an ESR1 or PIK3CA mutation pops up and one can move to a targeted inhibitor before waiting for the scan, will that increase the overall survival? I'm not sure it will make a lot of difference in the average for this particular trial, because we now have better data on ESR1 inhibitors and improved next-gen mutation-specific PIK3CA inhibitors that are still working their way through clinical trials (so the trial seems a bit premature). In addition, its hard to show an overall survival advantage for any trial! in the case where the cancer has both ESR1 and PIK3CA mutations, they might need a new trial to see about moving people onto Orserdu or another ESR1-inhibitor plus one of the newer PI3KCA drugs to get an answer for that particular situation. Nevertheless it will be interesting if they find there is a survival difference in switching before scans tell you to, but I can imagine if an MO sees a new actionable mutation and has a great drug at the ready to treat that, they might not want to wait much longer anyway.
0 -
@cblaurenceauthor So glad you were able to see your favorite doctor yesterday. I so hope the meds you are on now kick in. It is obvious you care deeply for your father. Prayers sent that you both will have time for more memories. The COVID idea, nothing ventured, nothing gained.
I signed up for pallative nursing care, to help with pain control and other problems that go along with MBC. The RN visits me once a month and I feel comfortable with her. I know when the time comes, she will implement the hospice program thru her non-profit employer for me. She already knows my wishes so things should go smoother. Praying we all do not need these services for some time to come.
Laurel
2 -
Hi everyone,
I’ve decided to go into the hospital to start greasing the wheels for hospice. The PA in the infusion center (after a crazy day ) gave it to me straighter than Dr G. I asked her when I should tell my dad to come out and she said she didn’t have an exact time but once the envephoscy started I wouldn’t be able to have quality time together so in other words : soon.
Yesterday, getting me in and out of my chair was difficult and dangerous, so we called 911 to get me here. I’ll leave once home hospice is ready.
I can’t express my thanks enough and I wish I’d had the wherewithal to continue further but it was too difficult to get me around and emotionally handle the physical deterioration.Thank you to all here but especially cureious and Esther. Your knowledge and fight are so inspiring. I can’t thank you enough
I wish all of you the health and happiness in the world and that you are all around to witness the cure. It’ll be here one day.
Love to all, 🥰❤️💕
CBL
9 -
CBL, You are so inspiring to everybody, we all still hope that the drugs turn this around, but well understand, for all of us, that day will come when they can't. So just, let that day not be today…
3 -
@cblaurenceauthor sending love and light for this next part of your journey, whatever it brings. Thank you for all of your wisdom and sharing your direct experiences. I look forward to reading your books ! With gratitude, sending hugs and love to help light your way into calm and peace of mind as it unfolds.
1 -
Hoping with all my might that the drugs work, but also acknowledging that you are in a critical and difficult part of your journey. Wishing you pain-free peace and lots of time with your Dad. You have shown the rest of us how to stand up and battle this beast and be our own best advocates. It has been an honor and a pleasure to "know" you.
🧡
3 -
CBL, I am sorry to hear how your story has turned. I'd hoped that you would find another effective treatment. Thank you for sharing your experiences. Wishing you comfort and extra time with your loved ones.
1 -
Hi NewGardener, How are you doing? I'm still confused on your on-off Enhertu treatments…
0 -
@cblaurenceauthor Hoping you have more time to make some extra memories with your Dad. You are a blessing and thank you deeply for sharing your journey.
Irishlove
0 -
@cblaurenceauthor Oh CBL, I just prayed that the drugs would turn this around. You have been such a light and an amazing advocate for yourself. Thank you for sharing your wealth of information. You are a blessing and I pray that you and your dad are able to have some extra memories. Thank you for sharing your journey with all of us. Sending you love and prayers.
0 -
@cure-ious any thoughts on this news out of Duke about their breast cancer vaccine study?
1 -
Hey, MsWife, I had not caught this story, am gonna go look up what's up with this!!!
A small group of women with advanced breast cancer received a vaccine via a clinical trial more than 20 years ago. Today, they’re all still alive. Scientists say that kind of long-term survival is almost unheard of for patients with metastatic breast cancer, and it’s what caught the attention of researchers now…..
Update: A link to the trial is below (no longer recruiting). This is a Her2 vaccine plus Keytruda, so for Her2-positive cancers, they find that the long-lasting immune cells giving protection express CD27, and show that in mice adding CD27 stimulation and CD8+ cell stimulation further helps the response. The group is also pursuing a vaccine for ER-positive breast cancers with ESR1 mutations.
Its odd that the press coverage seems to only be carried by Duke, and they mention there is a new paper published in Science Immunology but I couldn't find it on the Sci Immunol website, or in PubMed…
www.clinicaltrials.gov/study/NCT03632941
0
