How are people with liver mets doing?
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thank you for the explanation Z, I got so excited when I read the word vaccine....I thought they were treating cancer as a virus...I hope they move to clinical trials soon....
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Struggling to keep up with this very busy thread-
The loss of Artist is numbing; we have lost so many recently. I will definitely strive to keep up the good fight in honor of all of these incredible women. Thinking of the families coping with these unfathomable losses....
Kayborg and Kaylynne- thinking of both of you. Kayborg, I hope the trip to St. Thomas is restorative and brings you the joy you so deserve. Kaylynne-in your corner pulling for the Xeloda to work. I have just started it as well.
I will reiterate what others have said regarding Y90. It just has not been used a whole lot for breast cancer. When I first mentioned it to my MO, he said he only uses it for colon cancer that has gone to the liver. My last PET showed incredibly stable bone mets, but progressing liver mets. My DH actually spoke up and said what about interventional radiology? MO said, you know, I'm glad you brought it up. Since bone mets are under excellent control, I will refer you. I have consulted with two IRs since and am going for the Y90. I will have MRI of liver and then the standard "mapping" of the vessels of the liver. if all looks good, it will be a go. Insurance must approve first, of course. Labs must be within certain ranges. I was majorly impressed with both IRs, specifically the second one, who is a woman. Take home message: ask for referral to IR.
Hugs to all of you dear souls; may the force be with you.
MJH
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Miaomix, thanks for the link and info about the potential "vaccine". It is nice to see some glimmers of hope in our world.
MJHJAN, great news you were able to push through to have the Y90 procedure. I have my mapping on Monday.
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Miaomix - The cancer is the non-self target they trying to prime the immune system to see and kill, instead of a virus. Still exciting. There are several ways to do this. None of them work great but they just need to figure out what to combine it with. There are challenges with ERPR+ breast cancer because it generally keeps lymphocytes out of the tumor. The treatment you referenced requires lymphocytes in the tumor to work, or so they say.
Cure-ious - A while ago you posted this. Interesting. Curious where you got it.
estrogen plays a fundamental role in the regulation of immune cell function by binding the estrogen receptor alpha expressed on T-regs to enhance the immunosuppressive function of these cells, and also to stimulate TGF-beta production, which acts to further suppress immunity: "Clinical approaches must generate and maintain type I immunity while simultaneously controlling these immunosuppressive elements." Alternate immune checkpoints for HR-postive tumors that trigger T-cell activation should be explored, including BTK inhibitors, such as ibrutinib that inhibit inducible T-cell kinase, which is required for Th2 activation. I have a lot of hope for the use of immunotherapy in breast cancer, but as more of a platform for generating the Th1 immune response and an immunogenic tumor environment.
Here's a short and incomplete take on it. I am interested in the source ....
- Estrogen is suppresses the immune response (I did not know that).
- BTK inhibitors are another way to down-regulate immune suppression involving B cells, but I have never gotten into anything on B-cells and cancer. Whole new mechanism for me.
- Th1 is a set of cytokines released by helper T-cells associated with inflammatory attack on cancer. Th2 is a set of cytokines released by helper T-cells and associated with allergies and not inflammatory. The text seems imply that Th1 activation is better than Th2 for killing cancer, but that's a deep question I cannot speak to myself.
The challenge of immunotherapy is what cells you activate and what state you put them in. Immune cells are wired drive each other into different states in order to maintain a balance, often cutting short an immune response. There are so many ways to de-activate the system.
One point sticks with me these days. ERPR+ cancer is less likely to express PDL-1 because it is less likely to have T-cells infiltrating the tumor. It's actually those infiltrating T-cells that drive PDL-1 expression.
>Z<
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MJH -
I, too, am on Xeloda...just finished my 2nd cycle, and had a CT scan today—I get results on Monday. My TMs doubled after the first cycle...from 400+ to 800+, so I’m concerned it’s not working (although I’m feeling pretty good right now).
Regarding Y90...like you, my MO is against it—she says it damages healthy tissue, and it is not recommended. After reading Grannax’s, and other’s success stories, I decided to be my own advocate, and sent my records to a leading IR at Northwestern. I heard from them today, and they are going to try to get the Y90 approved through my insurance, but they don’t want to meet with me until X fails/more progression in liver. Does your IR recommend having the Y90 while on X? I’m curious, because I don’t want to wait for progression...I want to knock these suckers back ASAP.
🙏🏻 to all!!
KC
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Zarovka, my doctor said that with liver mets toxatere seems to be the most beneficial.. All the best with making the decision, but chemo can really make a difference I think
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So sorry to hear about Artist. What s waste! The stupid system definitely failed her! I hate BC!
Babs
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A quick update on me. After 3 Gemzar treatments all numbers looked good. Liver numbers better, even TM down a little. MO said she would have been happy with stable TMs.
The other issue is my ever moving HER2. My original bc biopsies ( from breast tissue) were positive, but just barely. My first bone biopsy after mbc dx ( from spine) was again barely positive. So, first treatments for me were Taxotere, Herceptin and perjetta. Bone progression on those, so another biopsy’s from my hip. Negative. Switched gears to those for negative. So, when liver became involved, another biopsy. “Equivocal.” MO was persistent. Got four equivocal reports and then she sent it to Mayo. They came back with a positive. Again, weakly positive, but positive. The plan now is to add Herceptin to my Gemzar. She is also going to consult with colleagues with whether or not there is any reason to add perjetta too. So, good news there is a road map now- however weak and faded. I’m assuming I have more biopsies in my future with any changes. The ever moving HER2 Target.
Btw, Gemzar ( and the cumulative effect of 4 years of many treatments) has kicked my butt on fatigue, but guess I’ll deal with it.
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Kaption - with all the bad news lately, I'm thrilled Gemzar is doing something, and that your MO is trying to find more stuff to add on! Just get to stable first, then push the envelope...
Z- Here is a link to that story:
http://www.targetedonc.com/news/expert-explores-mo...
PD-1 expression seems not to be such a great biomarker for predicting response in trials where there is larger response to IP , and drugs like Ibrance induce PL-1 anyway. How to switch the tumor microenvironment, as discussed above, is one big question...
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MJH. That is great news. Praying for insurance to cover, mine did. If they balk, you may have to appeal. Seems like we have to be ready to self advocate at every turn. I'm still trying to get my MO to answer two questions about my F1 report, no luck so far. So frustrating and she is one of the few MO who referred me to IR without me having to ask. I don't understand why she isn't being proactive about F1.
KC1010. I was only on I/F when I had y90 and i was allowed to stay on it. So, I don't know about xeloda. But, I sure don't see why you can't have a consultation before progression. That doesn't make sense. Push for the consultation.
My favorite MO of all time is at Northwestern. His name is Massimo Cristofanilli. He was my doc at MDA back in 2000. I'm not sure I would be alive today if it had not been for him. I was upset when I was DX this time and found out he was no longer at MDA. But, Northwestern is too far to be an option for me.
JFL Excited for you, I'll be thinking of you on Monday for mapping. When is y90 scheduled?
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Another story on different immunotherapy approached"
http://www.targetedonc.com/news/trials-consider-ro...
Combining Keytruda with Halaven gave a 26.4% response rate for metastatic TNBC even as a 3rd line.
PARP inhibitor plus immunotherapy gave a 52% overall response rate, which is high, the one downside being that it is only for BRCA-mutant HER2-negative MBC.
- however we should be hopeful about this. When CDK12 inhibitors get into trials, they wipe out expression of BRCA gene. So adding a CDK12 inhibitor to the PARP inhibitor makes all cancer cells behave like BRCA-mutant cells, and respond to this therapy. They just have to hurry up the CDK12 inhibitors to trials (every pharma has a project on this ongoing)
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Grannax - thanks for the reco on the MO. Ive heard that Dr. William Gradishar is the very best for BC at NW. However, your glowing reco of Dr. Cristofanilli has me curious about him, too. I’m getting ready to go for an third opinion, and possibly change MO’s. I’ll look at both doctors, and see who I can get in with. Thanks so much
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KC1010, are you at Northwestern? The king of Y90 in breast cancer, IR Robert Lewandowsk, is there. May be worth trying to get an appointment with him or one of his team members. It is his research that has permitted us to have the Y90 procedure. My two cents is that even if you wait for progression, or wait a few lines of treatment down, it is a good idea to consult with an IR now and get everything prepositioned - so you are initially "cleared" and under the care of an IR and know the process so you can move quickly when you decide to take the plunge and can avoid treatment delays and making decisions in a pressure cooker at the time of progression. Y90 takes some time to be appealed/approved by insurance and some time to schedule. I hope you are experiencing Xeloda flare and nothing more with your tumor markers. My tumor markers and liver enzymes flared during the first 3 - 4 months on X when it was working really well.
Grannax, my Y90 is scheduled for Tuesday, April 10! Left lobe first.
Kaption, what kind of test or retest did MSKCC do to determine your biopsy was ultimately HER2+?
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KC1010,
I have a appointment with Dr. Lewandowski on Tuesday, April 3rd. My primary MO is at Rush, consulting MO at Northwestern Woman's Prentice Hospital, so getting an IR appointment was easy and quick. You need Mri's To send to IR and they will ask about insurance, then a prescreening nurse calls to see what your liver enzymes, bilirubin numbers are and your level of energy. If you have MYChart, you grant access (form) so both institutions can view all your records.
Are you having MRI's on your liver? They show more than ct's, I have ct's for lung Mets (stable) and MRI's for liver.
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JFL/Max -
Dr Lewandowski is who I am talking to regarding Y90. Karen, his coordinator, told me to contact them when I have progression, and they will work on insurance approval in the mean time, so we're ready to go. I have not had an MRI on my liver yet...
My primary MO is at Lutheran General (Advocate), and I got a 2nd opinion last summer from a great Dr. at NW's Lake Forest campus. I love my MO, but I'm considering changing to Luri Cancer Center so I can have my docs all on one team/one location. Plus, I love the fact that NW is a research hospital, with more access to trials. My current MO doesn't have much to offer me.
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JFL,
It was a FISH test. I was not positive on the ratio of HER2: D17Z1; but was on the HER2 copy number > or = 6.0 signals per cell. I was 6.2. So, barely positive for now.
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JFL- I wanted to wish you good luck on Monday with the beginning of the Y90 procedure. May you receive the best of care!
I too have an appointment but with my MO on Monday. I will find out the results of my pet scan....Till then, I’m going to keep on enjoying my focaccia bread and not dwell on possible progression till I see her...so she says....
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JFL,
Sending positive thoughts for you on your Y90 procedure.
The last few days I've talked with my family, each of them individually and emotionally I am drained but peaceful, I'm listening to music and that always helps my moods.
My oldest came in for Easter and I told me he is a vegan now, so I'm preparing two types of Easter dinners with help. Actually I enjoined the prep and cooking, I made a sweet potato and chickpea curry for him and we all found it very tasty.
There are playing an Irish jig I feel like dancing...
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Meow/Miao on that Focaccia bread! I will be eating at Mario Batali's Del Posto on the 18th! I'm ready to file a harassment suit if he grabs me but really want to eat. lol Interview the next day. Restarting x end of next week. PM if you can meet me in NYC - I'm staying in Chelsea. Rooting for you JFL! We are still working through all these meds.
Happy Easter/Passover to all!0 -
KC1010-I will be staying on the Xeloda throughout the Y90 procedure and afterwards. Progression in liver was noted after 4 months of fulvestrant. PET was at end of Feb. Y90 will be in May if all goes well.
Best, MJH
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KC1010 and Max Otto, I will be very curious to hear what you hear from Dr. Lewandowski. You can't beat having him as an IR.
MJHJAN, is your MO making you take any break fromXeloda around the procedure time or are you going straight through with normal Xeloda schedule? I am on Doxil which is administered every 4 weeks and will be taking 1 week off after procedure. I would have preferred no break but was lucky squeaking out 1 week off only.
Kaption, thanks for the info on your FISH. I am right on the line with copies but not as close on the ratio. When I sent my FISH for retest at USC with HER2/FISH test pioneer, Dr. Michael Press, the results reported on the ratio only and not the copies. I was very disappointed and when I asked my MO about the copies he said "Dr. Press basically invented the test so I wouldn't worry about it", but I was so not happy. So odd.
Miao, your focaccia looks so yummy! I want some!
LA, good luck with your interview and have a fabulous time in NYC! I am overdue for a visit there. I usually try to go a few times a year.
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LALady - Good luck with your trip!!
>Z<
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Hello Liver Met Sisters. I have been around for a while now but haven't posted on this thread before. Just needing some reassurance that living a long time with Liver mets is possible. I started with 4 tumours and went down to 2 on Halaven but I am concerned I may have had some progression. Scans are in 2 weeks.
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LALady you're so funny!! M. Batali is what we call in Italy “un sporcaccione" among other things. Ass pinching and grabbing is one the characteristics of a big sporcaccione, so watch out! But the food is good! You'll have a ball!
Right next and above Il Posto is the High Line, a long stretch of abandoned railroad tracks that have been successfully transformed into a beautiful an elegant park. You can see the west village, the meat market, and all of Chelsea while strolling the High line, among the thousands of people that visit it everyday. Hopefully it will be in bloom at that time, however, Manhattan doesn't become green till late May.
Close to Il Posto is the entrance to the Chelsea Market, a huge food shopping center. The Food Network broadcasts from that building. Maybe we can meet there for an authentic Italian gelato and then stroll the high line. I'll PM you about that.
You'll love Chelsea, don't forget to stop at La Bergamote, an authentic French Patisserie located on 9th ave and 20th street for one of their Napoleons or whatever strikes your fancy. They are made daily. Out of this world! My friends and I instantly regress and are transported back in time, to when food was still real, When we didn't have to worry about how all the chemicals and preservatives of heavily processed foods are slowly killing us.
I live nearby, at the cusp of Chelsea near Gramercy, the Flatiron and all the Villages. Slightly west of 5th Avenue close to the Union Square farmer's market...where's else would you expect an Italian to live in Manhattan?
JFL - I suggest we all meet and have a big focaccia and authentic yet low-carb-no sugar-no chemicals Tiramisu party ( my own invention) to celebrate life.
I'm pretty sure they will find me holding a spoon and a mouth full of Tiramisu when the time comes....
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Lalady. Enjoy your time in NY. So much to see and do. Definitely walk the high line with Miaomix and hit the Chelsea market!
JFL good luck with the mapping on Monday! I found it relatively easy. I hope you do too!
Babs
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More info regarding Stanford. They are starting the human clinical trials!
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More info regarding Stanford. They are starting the human clinical trials on people with lymphoma! What else is new?
https://seekingalpha.com/article/4160336-cancer-va...
A new cancer vaccine trial is now underway, as of March 27th, that is fundamentally different from any cancer vaccine trial held until now. Not only is it different, but it's also a lot simpler, its preclinical results on solid tumors is near a 100% complete response rate, it's cheaper, and the two components of this new vaccine approach are already approved. The combination isn't yet, but because the components are, final approval for the combination could come as soon as two years from now, according to trial leader Dr. Ronald Levy. This is despite the fact that human trials are only now beginning phase 1.
This info was published by a financial investment news site, and since Stanford has no stock to sell—at least not yet..."Success of this trial and approval could be a negative for other cancer immunotherapy companies, but watch out for whoever acquires this if it succeeds. However, since this particular vaccine only targets solid tumor cancers, ( can someone explain why they would choose to do clinical trials on lymphoma patients? Instead of saving the lives of people like us with solid tumors?) even if results on humans are as good as those on mice, there will still be plenty of space in the cancer immunotherapy space to attack other diseases.
Should I curb my enthusiasm?
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Miaomix -
It's a trial of a combo Stanford has been talking about for a while. This is the article from January that most people have been posting.
Definitely of interest. Here's the trial they reference.
TLR9 Agonist SD-101, Anti-OX40 Antibody BMS 986178, and Radiation Therapy in Treating Patients With Low-Grade B-Cell Non-Hodgkin Lymphomas
There are reasons to be hopeful and reasons to be cautious with respect to MBC. MBC is a challenging target for immunotherapy because most MBC patients do not have tumor infiltrating lymphocytes. Lymphocytes that have infiltrated the tumor recognize the cancer as non-self but the tumor micro-environment has made the inactive so they don't attack the tumor. When TILs are present all you need to do is turn off the brakes on the immune system. However, in the absence of TIL's you first have to get the immune system to see the cancer before try to drive an immune response.
Note this comment by Ronald Levy, lead investigator on the TLR9 Agonist/Anti OX40 Antibody approach: "I don't think there's a limit to the type of tumor we could potentially treat, as long as it has been infiltrated by the immune system," Levy said. The key caveat for this immunotherapy and many others is the presence of tumor infiltrating lymphocytes. That said, I feel this combo could allow the immune system to see the cancer and I actually wonder if Levy mis-spoke or over simplified. I am a little more hopeful than his comment would suggest.
Stanford and other institutions have been running trials of the TLR9 Agonist SD-101 for several years, in combination with radiation and other therapies. The results have not been great. It's the combination with an Anti-OX40 antibody that is new and having some success. And Anti-OX40 antibodies, on their own, are old news as well.
And that is all good news. There is a lot of safety data in humans for these drugs so Stanford can move right in to efficacy trials.
>Z<
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I guess what's been confusing me—although you kindly explained it earlier, so thank you so much for your patience Zarovka—is the headline.
They claim huge success rate with all sorts of solid tumors....yet because of the lack of tumor infiltrations lymphocytes in MBC, (our luck, right? ) we remain in some sort of limbo, waiting for a breakthrough from the various combination of these well known drugs.
Now I understand better all your choices, from your therapy in Japan, the low dose radiation at mayo, and your current decision to go for low doses of chemotherapy agents. May you get the breakthrough you deserve and help all of us along the way, with your thoughtful understanding and courageous actions.
And may God light the researchers path and help them find the key with this new combination that includes theAnti-OX40 antibody, before they get lost again.
I'm going to have to double my daily intake of phosphatidylserine from now on....that's all!
Thank you Z!
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Hello ladies, wanted to check in and give you the info I received from the IR I met with on Friday. I have been on Xeloda for exactly 1 year and scans from last week show stable everything except slight liver progression. We spoke of TASE and SIRT. I was told we would most likely use them both at some point. We were leaning towards y-90, sirt, then it was brought up that it doesn't play well with Xeloda, I would need to be off that for around a month. That was too long of a break for us, so we are now leaning toward TACE, which can be done many times if necessary. I am relieved to have options, just wish I felt less confused!!
Alissa
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