How are people with liver mets doing?
Comments
-
AlabamaDee – Congrats on another great scan! I'm so happy that the oral SERD ARV-471 is working for you! It's so encouraging that an oral SERD is working in the presence of an ESR1 mutation!!!
SandiBeach – Good luck with your decision regarding the timing of systemic treatment and Y90. Abraxane was a very tolerable and effective treatment for me. I hope Abraxane or Taxol will be VERY effective for you!
Grannax – I'm sorry that Navelbine is hitting your counts so hard. I'm having problems with ANC and WBCs on Halaven. The neupogen shots help a lot. I do 3 neupogen shots after the first infusion and the onboard Neulasta device after the second infusion. It's too bad that they won't let you administer the neupogen shots at home. I was also told that you need 2 weeks between treatments to use the Neulasta device. I hope that the transfusion will help!
Macbookair2 – I'm sorry that your mom is dealing with liver progression and potentially ascites. I would definitely contact her oncologist. Your mom is lucky to have such a caring daughter! Sending prayers and hugs!
0 -
Wonderful news Dee!
0 -
That is so good to read, Alabama Dee!!
0 -
Dee!! How long have you been in this trial now?!!
0 -
Hi SusaninSF..I know your message was for Nicole, but I was wondering if your MO's success rate for Trodelvy was for ER+ folks?
0 -
thanks everyone. ☺️
I started this trial Dec 21 so 25 weeks of stable disease. I am starting cycle 7 and was told they have a couple patients at cycle 20 (80 weeks) Since ARV 471 first in human was reported back in aug 2019 that means those couple patients were some of the first!
Feeling blessed and hoping to ride this wave a long time and not worry about what is next until I need to.
Dee
0 -
Congrats AlabamaDee, That’s fabulous news!! 👍👍👍
0 -
Dee: That is such great news!! So happy for your results.
Cure-ious: You mentioned a trial of SM-88 that is coming possibly this fall. I read somewhere that to be eligible for that trial you can't have had four or more prior treatments, including chemo, immuno., targeted, radiation, and others. That would eliminate quite a few patients with MBC. When there is that kind of exclusion criteria, is it possible to get into the trial through expanded access of compassionate use. An actress who is now on the Verzenio commercial , Khrystyne Haje, recieved SM-88 in 2017 and it put her in NED. That was quite a while ago. I wonder how she got it back then or if it was already in some sort of trial?
I've also been looking into Alpha Dart treatment for cancer from Alpha Tau out of Isreal and it sounds very promising but the trials they offer for breast cancer so far are in Russia (where I wouldn't go) and Japan. They recently recieved Breakthough Device Designation from the FDA. Do you know of anyone who was able to travel to another country for cancer trials. They are beginning other trials for other solid tumors in the United States and and other places. I wonder if they could still go off label and treat breast cancer here in the US or if a person could be allowed to go to Japan. It sounds like they have had excellent results with some of their trials but I haven't heard how the breast cancer trials in Minsk has gone.
0 -
Elenas, I don't know the history of SM-88, but maybe ask Luce about that since she is following it. It seems like it would have low side effects... One thing to note about that trial is just 30 patients for phase II, that suggests that they are still in a very exploratory stage- perhaps they intend to use it in combination with other things- they say if things work well they would expand this to 50 people, that's still very small for phase II.
Personally, I'm hoping for Dee's ARV-471 trial next (now that they opened up an arm with Ibrance) or they have indicated they will open a trial up with other combinations for 2nd/3rd line treatments later this year
PS Zarkova went to Japan for some NK therapy, but I'm not sure if that was part of a clinical trial
0 -
Hurray, Dee! Keep it going!
0 -
Congratulations Dee!
0 -
Dee, I am over the moon hearing your wonderful news!!!
0 -
Awww Susan thank you that was so nice I will most assurdley take you up on that offer! No I have not done Trodelvy...If I do any chemo again like Abraxane...we are going to try to get something like Trodelvy with it bc I do have PDL1...
DEE AWESOME AWESOME NEWS!!!!!!
0 -
great news Dee! Congratulations
0 -
Thanks LFF, moth and theresa, I do feel better even though I didn’t get everything on my list done yesterday. Lol I just moved some of the list over to today. Ha
Dee, awesome news. Happy dance.
0 -
Grannax2 - It’s ok to move the tasks to the next day. Your body is going through so much and the mind has to overcome too! I have been having increased fatigue since I stopped my prednisone burst therapy.
I just read a great article about the 5 minute plan. Prioritize your list and pick the first task. Commit to give that task five solid minutes(no rabbit trails allowed). If you just get going, you will often find you can complete the task or want to complete it even after the 5 minutes. Repeat the strategy as your energy allows. Reprioritize at the end of the day. Be thankful for progress, large or small.
I’m going to try it tomorrow on some tasks I have been procrastinating. Writing down the todo list is the first task! 😉
Dee
0 -
It is wonderful to read your about your response to this trial drug, Dee. Hope this trial works for you for a long time.
Nicole, what treatment are you on now? Is your MO planning to switch treatments?
After 2 cycles of Trodelvy, I found out that the spine Mets and liver Mets have progressed. The nurse who called to let me know the results of the scan said that my MO will be changing my treatment.
I have had about 12+ lines of treatment. I had a bad reaction to Anthracycline and Doxirubicin. I have neuropathy due to these drugs so don’t know if Carboplatin or Halaven would be a good choice.I guess I’ll have to wait till Thursday and discuss my options with my MO. If anyone has a good suggestion, Please let me know. Immunotherapy is given with Abraxane which also causes neuropathy.
Does anyone know about a treatment that doesn’t cause neuropathy?0 -
6 months after recurrence it seems my mom's MBC journey is basically over. she has metastatic ascites and significant progression since last month. another huge met in the liver in addition to the original 10cm+ and other mets in lymph nodes and lungs. 3 failed IV treatments and failed radiation in a row, i'm so discouraged. we're going to try to get insurance approval for alpelisib next (P13K target) but if that doesn't go through there's nothing else. maybe y90- we'll see on friday. lots of other chemos and HER2 meds out there i know, but none of them work, the the only one MO would want to try (bc it's stronger than what we've done) is combination chemo which she definitely wouldn't tolerate well. sometimes it's hard to understand how after recurrence not a single drug was able to give us any more time, making her weaker and weaker until she can't tolerate anything else. is hospice next?
0 -
S3K5, Can you try Trodelvy with immunotherapy? Will be interested to hear what your MO recommends...
PS There is a trial coming this fall that may improve the Trodelvy response https://www.businesswire.com/news/home/20210615005...
0 -
Dee,
I’m super thrilled for you!!! May this drug work for you fir many years!!
Which arm are you on in the study?? I see that it’s a combination of Ibrance and the new drug.. haven’t you had Ibrance before?
heba
0 -
macbookair2018, you are in tough situation. What does your mom want after reviewing her options. Your MO should be able to guide you on best course of treatment with your mom's current situation. Maybe that dual chemo can be low dose. Qualitty of life is important. All these drugs have some sort of side effect.
I am not a physician..but only here to support you. Recurrence is sadly the reality of us Stage IV folks.
But never give up trying..your mom will know you love her for being her advocate. You will know with guidance your next step.
0 -
S3....I am on Affinitor...we are staying with it until I scan mid July.... MY bad earlier I said that Trodlevy was Immunotherapy..I think I was thinking *tecentric* I see now Trodlevy is chemo.... No I have never done that...? Is it good does it target PDL1?
0 -
heba- my trial drug is monotherapy ARV 471. It is a special type of SERD. I did not qualify for the ibrance arm. So I am glad to have stable disease with just one drug. Actually I found out today on the RESIST chart that I have 11% reduction since baseline in total tumor volume!!!! That was all in the smaller tumor which is low density. The larger tumor is hypervascular and fluctuating in size but slightly larger than baseline. I plan to talk to my trial MO about the differences in the tumors when I go back in 2 weeks.
Dee
0 -
S3K5, I just finished 8 or so rounds of Gemcitabine/Carboplatin. I am also very concerned about avoiding drugs that cause neuropathy because of an unusually bad neuropathy that I got after Taxotere for early stage treatment. In any case, double check this with your MO, but my MO told me that even though Carboplatin can cause neuropathy, it's not typically one of the more neuropathy-causing drugs. I went through 8 rounds and wore ice gloves through part of it as a precaution, and I've been okay so far, for what it's worth. We are all different though. I've started progressing on this regimen though, so I'll be moving on to Enhertu off label since I'm Her2 Low. No idea if that will work but I don't really like my chemo options right now either.
MacBook, my heart goes out to you and your mother. You are not alone - after my metastatic recurrence things have only gotten worse in leaps and bounds. We might knock the cancer back in one place only for it to invade ten other places. No matter what treatment I try I continue to progress. I'm starting to feel so bad from the cancer that I am asking whether I can withstand treatment too. Unless the next drug or two radically changes the picture, I know where this is heading. I hate it, but it's true. I think medical science doesn't have the answers for some of our cancers yet. But I agree with what Sandi said - you have shown your love by being such a wonderful advocate, no matter what the future holds. ((Hugs))
0 -
I start Taxol next week. Oh well. I will start reading weekly Taxol site.
0 -
S3K3-
I am so sorry for your progression. Uggh Cancer is so awful. Is your neuropathy >grade 1? Do you have brain mets. If not then you may want to look at https://clinicaltrials.gov/ct2/show/NCT04504916
I was offered a spot in this VLS 101 study at MDACC, there are 2 other locations now. The wash out was only one week which is amazing. It did not seem to mind number of prior treatments. When you read about this antibody drug conjugate in the published papers, the side effects seem minimal.
FYI- Merck is buying out Velosbios inc just to get this drug! It is in my back pocket
Can you get your MO to ask for expanded access (right to try) to one of the hormone trials that show good success? I failed 2 chemos but am responding now. Maybe your MO could contact my trial doc, Erika Hamilton at SCRI to see if that is possible. I don’t know where you live, but Nashville has a good airport and some of my fellow patients are from all over.
🙏🏻 hugs
Dee
0 -
Nicole, Alabamadee and Buttonssmachine thank you all for your response.
Nicole, Trodelvy does not target PDL1 This is from their website: "TRODELVY® (sacituzumab govitecan-hziy) is a Trop-2-directed antibody and topoisomerase inhibitor conjugate indicated for the treatment of adult patients with unresectable locally advanced or metastatic triple-negative breast cancer (mTNBC) who have received two or more prior systemic therapies, at least one of them for metastatic disease."
Buttonsmachine, it is nice that your neuropathy is not getting worse with Carboplatin though it sucks that you have progression. Hopefully Enhertu will work for you for a long time. I will discuss with my MO about Carbo/Gemzar option tomorrow.
Dee, I was told by my MO that I am not eligible for any clinical trial. I will ask her tomorrow about the one you are on, though I am in NJ getting treated at MSKCC whereas the VLS 101 trial is at MDACC. Hope this continues to work for you for a long time.
I don't have brain mets but do have extensive bone mets (C1 to L5 spine, plus ilium and now the hip joints, shoulder joint) along with innumerable liver mets which are growing rapidly. Hopefully there will be one magic bullet to take care of all these mets.
Like my boss says, "I am a fighter"! Not giving up yet!
0 -
S3...that wouldn't work for me then I am ER+ PR- HER2-....with 10%PDL1... (or at least, I was, 2 years ago)....
0 -
S3k3
It must be difficult to look ahead to what’s next under the circumstances. Your MO may not have anything at MSKCC but The VLS-101 trial is also at Hackensack, NJ. Maybe it could work for you since it isn’t too far from NYC.
Expanded access could still be an option.
I know my MO at Sarah Cannon is on vacation this week. But she has access to several estrogen blocking trials.
I care.
Dee
0 -
A new paper out in Nature shows that breast cancer metastasis to liver and lung is mostly due to a failure of Natural Killer (NK) cells to keep tumor cells in a dormant state, which they do by secreting gamma-interferon. This protection by NK cells requires that they be "activated" by the IL-15 chemokine, as shown in the figure below. NK cell activity gets disrupted by liver "stellate" cells, which secrete a chemokine called CXCL12 that binds to the CXCR4 receptor on NK cells and causes them to stop growing. This moves the balance from tumor dormancy to metastasis.
There are some therapeutic implications. One is that liver and lung mets may be sensitive to IL-15 super-boosters like NKTR-255, already in clinical trials for myeloma and colon cancers, and potentially also to CXCR4 antibodies, which might protect the NK cells from CXCL12 and keep them in an active state. The findings suggest NK cells are master regulators of breast cancer metastasis, and researchers need more ways to attract more of them to sites of mets, and keep them active.
https://www.nature.com/articles/d41586-021-01381-5
https://www.nature.com/articles/s41586-021-03614-z
0
