How are people with liver mets doing?
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Lita - I am heartbroken by your situation and a it's stark reminder how quickly things can change. However, I feel you need to immediately contact an MO who you can have a conversation with and who is aware of the latest trials. I am not sure if anyone or anything can stop mets from progressing when it decides to but a good MO can suggest the best treatment possible to bring things back under control. Abemaciclib is known to be effective in overcoming blood / brain barrier and for most people CDK4/6 inhibitors gives great result.
Z - The development thats happening around TNBC is really amazing. This once dreaded type of MBC is potentially more treatable now than ER+/HER2-.
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To those of you who were kind enough to give me some good advice last night about my wife's fever. Her fever hopefully is now under control and she did not need to take any Tylenol since last night. Her temp shot up in the range of 99.x a few times but came back down soon after. She has also gotten back her energy though still little weak. Hopefully it was just a viral fever and nothing else. She will be starting Halaven next Thursday.
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wooohooo.
>Z<
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I hesitate to put this out there ... because I know a few of you will be up all night with this thing. But this is an amazing interface to search for immunotherapy trials. You can search by trial phase, location, target gene mutation, modality (CAR-T vs monoclonal antibody vs vaccine etc).
309 immunotherapy trials for MBC, only 6 are phase III. It will be interesting to see what those numbers are in 3 years.
>Z<
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Thank you, Z. Bookmarked.
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Z - Thats an excellent link. It seems like CRI has finally made its database searchable online. Before this, one had to call CRI and talk to a coordinator, who in turn would have sent over a link customized for that specific request. My experience with that process was less than impressive. Now I will eagerly search this tool tomorrow with a fresh mind and see what's out there.
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LMWL so glad your wife is doing better and glad to see you round here again. Thanks Z. Checking it out.
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Abemaciclib is available to patients now under an expanded access program. I believe a drug company can make its drug available under this program when its drug is on the fast-track review by the FDA.
Your doctor has to send some forms to the FDA indicating that the patient needs this drug and there is not another drug on the market that is working for the patient.
I think the doctor can get the ok from the FDA quickly if circumstances warrant.
I talked about this with my doctor a couple of months ago when I needed to make a change from Ibrance. I am taking Kisqali now but my doctor would have gone to the FDA for me to get Abemaciclib if I had wanted her to do that. Sometimes I wish I had asked her to do it but I am having no problems with Kisqali after being on it for two months.
Lita, I wish you the best. I, too, was devastated by your news. I don't post but I read the boards.
I posted now because I thought you needed to know this about Abemaciclib.
So, you don't have to be on a trial to get this drug. Hopefully, getting it under the expanded access program can be faster than getting into a trial and getting it that way.
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Thanks, Meadows!
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Thanks meadows4. This important information. Here's the link to the Lilly Expanded Access application. Your doctor has to apply. I would certainly consider this route if I were dealing with progression today, based on my specific circumstances. I am probably still responding to hormonals, so combining faslodex and abemaciclib for a second line treatment would be a reasonable option.
https://www.lilly.com/discovery/clinical-trials/ex...
Regarding the Cancer Research Institute (which produces that immunotherapy trial database) ... they also have navigators (real humans) who will work with you to identify appropriate trials. Cancer commons is another service (an actual human who reviews your diagnosis and treatment recommends trials). I have heard of people who did well with paid consultants but I haven't pulled that string myself, yet.
>Z<
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Lita - very excited about Abemaciclib - I'm looking at it too. You may really respond. Please stay your positive good humored self, we are all rooting for you.
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Lita I'm shocked and saddened with the news, I have no words to express just sending my love to you.
Ziz
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Lita, another drug is ANG1005 (previously known as GRN 1005) which has shown positive results in not only brain mets but leptomeningeal mets in the last few years. It is a taxane specifically designed to break the blood brain barrier and the cerebral spinal fluid barrier. The drug company, Angiochem, is specifically focused on finding treatments for brain and neurological diseases. ANG1005 is currently undergoing a few Phase 3 trials although they are not accepting new patients. However, they have accepted expanded use patients on an individual basis in a several instances in the past. It may be worth investigating as this drug sounds like a "white knight".
I am floored that you have only had one line of treatment. You have a good instinct to find a new doctor who is as dedicated to your health as you are. You don't need someone who is just going through the motions at this point.
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Lita - here is the link to ANG1005.
https://clinicaltrials.gov/ct2/show/NCT02048059
There are many facilities who are participating and it will be best for you if you can call them right tomorrow. They may not be recruiting (or so clinicaltrials.gov says) but it is up to each facility or the drug manufacturer to handle compassionate use cases.
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LMWL so happy for you guys that the worst is over. Def think UTI if it happens again. And Zar thanks so much for that link of what a fever could mean.
Lita you have to imagine all these wonderful people, your circle of true friends when you face Onco. They have nothing on this crowd. You are coming armed. I posted on a different thread to you. It's a good chance calling Hospice now it's just a routine call. My warmest hugs to you sweetie, go get them!!
Kaayborg hopefully you are on the right track now.
Dani is continuing on the trial. We are disappointed about the scans, very vanilla with a lot of Jalapeno, but they are willing to take a chance on her continuing on, so we gonna play that card for now.
I am trying so hard to understand all these conversations, i bookmarked all the info, now I gotta read it slowly. Her former Onco has moved to Sloan (where she is having the trial) and she told me she would be looking for other things. Dani does not have PD1/PDL1 so i have to kinda make sure that they look into IO anyway. Gotta put that on the table.
My hats off to all of you for such a dedication in helping others. Fantastic info, thank you thank you!!!
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Mom - Thanks for your kind words. Although the worst is hardly ever over with this disease, it is one thing that's been taken care of for now.
Sorry to hear that Dani did not have the best scan possible but happy to know as well that she will be continuing with the trial. My thoughts and prayers are with you and Dani.
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Mom - There hasn't been a strong relationship to the PDL-1 expression they find in testing and response to PDL-1 Inhibitors, so I am glad you keep pulling that string. MSKCC has access to some of the best trials. If this trial fails Dani, a good opportunity will be close at hand ... but I am glad they kept her on the trial for at least another scan. Hoping that the next scan astonishes everyone.
>Z<
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Yep yep, gonna get the TM's today, let's see how that works out. Will keep you posted.
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Mom, I echo Z about the PDL yada yada. I hold out hope for immunos regardless of status. Wishing Dani all the best.
Surprise email from the NIH trial today. They want to see me Monday for screening. Missed their call at 5 today when without adequate reception driving in the country...grrrr...so I wait for details tomorrow. No Xeloda pills yet so it's still an option. Also not feeling any worse for waiting through the weekend. What to do, what to do? Hoping for a very short wait post screening to first infusion. I think screening includes biopsy and Ecg.
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Kaayborg - very interested in the NIH screening process and your thinking on what they offer.
>Z<
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Good news, Kayborg! Glad SOMEONE has a bit of hope to hold on to.
Hugs,
Lita
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Kayborg - great to know you are making progress with NIH. What's the trial number ? Feeling curious to look it up. Also you may want to find out about NCT01174121 trial which is about TIL, being done at NIH. Its not for the faint or hearts but they are recruiting for MBC patients. The contact is deepti.marshall@nih.gov.
Lita - Did you have some luck with Abemaciclib trials or ANG1005 ? You may also want to reach out to NIH about the TIL trial. The inclusion criterias says "Patients with 3 or fewer brain metastases that are less than 1 cm in diameter and asymptomatic are eligible.", but you may be able to make a case with them.
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Let...I have TWENTY PLUS brain tumors, so I wouldn't qualify, and the two biggest ones are 4.1 cm and about 3.5 cm. Way too big, but thanks for thinking of me.
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Lita, I am so sorry. I feared that having read many trial exclusions of late but thought compassionate care enrollment might be different.
Lmwl, NCI15C0145...sorry I'm not better with adding links.
Phase I/II Study of the Anti-Programmed Death Ligand-1 Antibody MEDI4736 in Combination With Olaparib and/or Cediranib for Advanced Solid Tumors and Advanced or Recurrent Ovarian, Triple Negative Breast, Lung, Prostate and Colorectal Cancers
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Letmywifelive I've read about TIL at NIH for melanoma but didn't know they are trying it on MBC patients. Very interesting. I'm not there yet, thank God, assuming it's for those who have failed several TX. In general, what is the protocol for accepting MBC patients into this trial? Is it for Er+?
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Grannax2 - From the clinical trials site :
https://clinicaltrials.gov/ct2/show/NCT01174121
1. Measurable metastatic (stage IV) gastric, gastroesophageal, pancreatic, hepatocellular carcinoma, cholangiocarcinoma, gallbladder, colorectal, urothelial, "breast", and ovarian/endometrial carcinomas
2. Breast and Ovarian cancer patients must be refractory to both 1st line and 2nd line treatments and must have received at least one second line chemotherapy regimen.
So it is for MBC patients and can be considered after progression on 2nd line of treatment. I have heard that they have treated ER+ patients but best to reach out to them and find out. If you are interested best to reach out now since these trials often have a long wait list.
Kaayborg - The trial looks promising. Fingers crossed. It is really amazing how fast TNBC treatment has evolved just within the span of a couple of years.
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Grannax, for various reasons, you want to consider immunotherapy trials as soon as you might be accepted. That is generally after on or two lines of treatment, but not always. There are trials for early stage MBC. Everyone needs to keep in mind that immunotherapy means many many things ... some of the treatments are among the easiest with few side effects. Many of the trials are with drugs that are well understood and approved for other cancers, and therefore relatively save.
The TIL trial, however, is among the toughest, requiring a month of chemo in a hospital so they can wipe out your immune system and replace it with TIL's extracted from you tumor, basically. The reason why it is making headlines is that has put MBC patients into remission ... off treatment and completely healthy. However ,it is not the only way to go. Personally, I think it is risky for late stage patients ... a trial you should consider only when you are basically healthy.
Kaayborg - what an exciting trial. I hope the discussion with the NIH goes somewhere.
>Z<
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Reading all the posts. Just wanted to say hi.
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I agree, Z...you really should be "healthy sick" to participate in a lot of these trials.
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Does anyone else find this whole clinical trial thing completely exhausting?? Trying to "best guess" when to be aggressive and when to hold back? Creating a treatment strategy without an oncology background (for good and for bad?). Pushing one's doctor to try and think "out of the box" even when one is confident of one's oncologist? Sorry for the rant. Just tired tonight.
Kimberl
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