How are people with liver mets doing?
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kaayborg, did you see what hartrish posted about immun132? This may be our answer!
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Kasborg. I know how you feel. We both need a win that’s longer than a few short months
Babs
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Kaayborg -
You have two good options on the table. I think it is good that abraxane is first. I would avoid a trial if you do not know if you get the drug you need given the activity of your cancer at this time. Hopefully IMMU-132 is doing well and will be released before you need to move on from abraxane.
Whether these are your last treatment options or not is really your decision. There are more options when you look at trials. The trials are not high odds plays. A positive result in a trial will give you more time but mostly likely not an end to the disease. I have a lot of respect for choosing QOL over tilting at windmills. However, consider consulting Emerging Medicine, the Cancer Research Institute or Cancer Commons if your team seems close to exhausting their bag of tricks and you want to keep going.
Sending peace and strength to find and follow the path that is right for you.
>Z<
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Kaayborg-
Let's try to figure out the best options- are you willing to do a clinical trial?
Abraxane is strong drug, but might work better in combination. Below is one discussion from last years' San Antonio Meeting that favored the combination of Abraxane with carboplatin. I will go look up other Abraxane combinations that might be worth considering.The median progression-free survival (PFS) was 7.4 months with Abraxane plus carboplatin compared with 5.4 months for Abraxane plus gemcitabine and six months for gemcitabine plus carboplatin. The 12-month PFS rate was 27 percent with Abraxane/carboplatin compared with 13 percent and 11 percent for Abraxane/gemcitabine and gemcitabine/carboplatin, respectively.
"I think it's an exciting study because there's such a role for doublet therapy, particularly in the triple-negative population. There's a lot of controversy between sequential single-agent or doublet therapy," said lead investigator Denise A. Yardley, M.D., senior investigator at the Sarah Cannon Research Institute. "The Abraxane/carboplatin arm in this phase 2 study came out demonstrating the ideal efficacy pattern for the triple-negative population."
The phase 2 study randomized 191 untreated patients with metastatic TNBC to receive the combination of carboplatin and gemcitabine (66 patients) or Abraxane with carboplatin (64 patients) or gemcitabine (61 patients). Abraxane was administered at 125 mg/m2, carboplatin at AUC2, and gemcitabine was given at 1000 mg/m2. In each arm, treatment was administered on day one and eight every three weeks.
Patient characteristics were well balanced between the arms. Patients had an ECOG performance status of 0 or 1 and the majority were enrolled in North America (about 48 percent) and Western Europe (38 percent to 46 percent). A quarter of patients had a disease-free interval less than one year. The most common site of metastases were the lymph nodes (62 percent to 78 percent). Two-thirds of patients had received prior neoadjuvant/adjuvant chemotherapy.
The objective response rate (ORR) with Abraxane/carboplatin was 72 percent, which consisted of seven complete responses (CR; 11 percent) and 39 partial responses (PR; 61 percent). The ORR was 39 percent with Abraxane/gemcitabine and 44 percent with gemcitabine/carboplatin. The CR rate in each of these arms was 8 percent. Twenty-two percent of patients had stable disease for at least 16 weeks in the Abraxane/carboplatin arm compared with 44 percent and 32 percent in the Abraxane/gemcitabine and gemcitabine/carboplatin arms, respectively.
Median overall survival (OS) was 16.4 months with Abraxane/carboplatin compared with 12.1 months with Abraxane/gemcitabine and 12.6 months for gemcitabine/carboplatin. These findings were not statistically significant.0 -
One I like better is Abraxane with Atezo (immunotherapy), which I think is the IMPassion130 phase 3 trial
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Yes, here is the link: https://clinicaltrials.gov/show/NCT02425891
It indicates that the trial is ongoing, but not recruiting, does that mean they might be finishing up?
Presumably something about this trial will be presented at the San Antonio meeting next week
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I'm not keeping up with this thread, and when I come back it is daunting. I need to check in more often but for shorter sessions if I can. Anyway.
Kaayborg, aren't there a lot of immunotherapy trials for TN? You haven't tried that yet, and hopefully a new approach will be a stealth attack on that cancer. Also, I think that double therapies, as Cure-ious describes, are a good idea. I am not even willing to consider your being out of cards. Just no.
Zarovka, welcome to the port club. It will make your life easier. A note about the lidocaine/prilocaine cream. If yours is like mine, put it on between 45 minutes and 1 1/2 or 2 hours before access. That is the window. I find it works best if I put it on one hour before. Also, if it starts to seem ineffective, get a fresh tube. Don't leave it in the heat.
Cure-ious, that is very interesting about the circadian rhythm in cells. That info lines up with the research showing that night shift work and maybe too much light at night can increase cancer risk, and that melatonin may be anti-cancer.
Lalady, may your Christmas wish be granted.0 -
I am overwhelmed by all of the support and info you ladies offer. How is it that the smartest and nicest people in the world must be afflicted with all this garbage?
I have made note of the combo of carbo and abraxane and will ask my onc. Having progressed on carbo I question whether you should go back to it but I also did well on if so long. In theory a combo could reactivate its power???? Would be nice anyway. Would be nice if every idea and circumstance came with data.
The stinkin trouble with trials is the wash out. I have so much cancer in my liver and it grows so fast. Immun132 has only a 2 week wash which is why it appeals. Pretty nice data too. Exciting to hear about the fast track.
We added pembro off trial with insurance approval. Would love to switch to atezo with abraxane and will likely try but my onc thinks it will be doubly difficult to get approval and also takes time. This is why I had 2 cycles if eribulin before we could get the pembro. May try same with abraxane. But for now hoping for pembro magic.
There are many trials for TNBC with immunotherapy but all tend to exclude you if you've had prior immunotherapy. Need to see what else there is.
Y90...still just not sure where it fits for me. If I could get some wiggle room with tumor size, I'd go for it. Now it requires too much time off treatment. I can't take the risk right now. My onc had multiple patients for whom it did not go well. I was so excited about it but now am scared.
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Kaayborg -
TACE is an alternative to Y90. I don't know if it is safer for you but it maybe worth asking about. Personally, I would consult with the specialist before declining the local liver treatment. These local liver treatments carry the risk of liver failure, especially if your liver function is impaired from a lot of chemo. Your doctor has reason to be concerned but in my experience MO's are not a great source of information on these treatments. You need an expert to walk you through the risks. Remember that not controlling these mets has known risks as well.
Trial screening services go through all the details ... wash out periods and prior therapies ... for you. All you need is one trial and there are hundreds with all different criteria so ... there are trials for you.
The trials that look at checkpoint inhibitors generally don't want patients who have received checkpoint inhibitors. However, checkpoint inhibitors are old news.The term immunotherapy is often conflated with PDL-1 inhibition but your immunotherapy options are very broad. There are tons of immunotherapy trials that accept people who have had a checkpoint inhibitor. Not the checkpoint inhibitor trials, but all the other trials will take you.
After a quick scan of the NIH Immunotherapy trials, I found that the adoptive cell therapy trials (CAR-T, Tumor Infiltrating Lymphocytes, etc) seem to assume you have had PDL-1 inhibition. Here is s link yo the famous Tumor Infiltrating Lymphocytes trial. One can debate the pros and cons of that TIL trial, but the way it really works is that you call the NIH, they screen you and they match you with appropriate trial options. I did see a one month washout period on a couple of trials. I agree that is scary but perhaps if you are vetted and ready to go so the break in treatment is really one month you might be able to consider it as a future option.
Abraxane and the ideas your doctor and Cure-ious are pitching are the way to go now. You have an urgent need to control the cancer. But consider getting vetted by the NIH so you know what options you have with them. They are very open to people traveling to their trials and provide some support. The NIH is one of the major centers driving immunotherapy, MSKCC is another. Whatever is most convenient.
Also consider working with a trial matching service ... not for now but for down the road ... so you are prepared for the next jump in this log rolling contest.
I am watching oncolytics closely. Oncolytics is the treatment of breast cancer with an engineered virus. I would prefer to wait for more results but if I was really out of solid proven options now I would head over to the Mayo Clinic and ask about this trial (3 week washout period after chemo). These strategies tend to have minimal side effects so you get good QOL and a shot at treating this disease.
Viral Therapy In Treating Patients With Recurrent or Metastatic Squamous Cell Carcinoma of the Head and Neck Cancer or Metastatic Breast Cancer
For those with TNBC following from the gallery, and perhaps close to Houston, this is a really cool trial that combines some of my favorite strategies. SBRT and pemrolizumab are a solid treatment strategy without the oncoloytic virus, so this a lot less risky than doing an oncolytic virus alone.
SBRT and Oncolytic Virus Therapy Before Pembrolizumab for Metastatic TNBC and NSCLC (STOMP)
Unfortunately since the houston trial includes a checkpoint inhibitor it excludes patients who have had keytruda, so not for Kaayborg. However, SBRT followed pembro is absolutely worth a try and that Kaayborg can do outside of a trial.
Hang in there. If you don't want to give up, you don't have to. But if you don't want to be a lab rat and fight battles, that makes eminent sense.
Whatever you choose, you have an army of women in the same boat with you.
>Z<
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Claire, good to hear good things about Abraxane. It or Halaven are probably in my immediate future since my TMs just doubled with I/F. Xeloda, which would be my first choice isn't in my insurance company formulary. I'm scheduled for a scan on the 4th so we'll see if that verifies the TMs.
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Hi Kaayborg and Cive - let me personally thank Abraxane (A-train) for being a super cancer killer. My TM's dropped by 1/2 first month and then 1/2 again second month and are still dropping. Do not be afraid, you can use cold caps and save your hair - or not. The SE's are not too bad, major one to watch for is neuropathy. I have a little in my left foot which was where I got some from Taxo-terrible when I was stage 3. No question this stuff will knock out bone and liver mets. Please PM me with any questions. It's gentler to take because it's delivery mechanism is via an albumin binder which is easier to tolerate. Antimicrotubule agents (such as A-train), inhibit the microtubule structures within the cell. Microtubules are part of the cell's apparatus for dividing and replicating itself. Inhibition of these structures results in cell death. Way kinder than any other taxane - fyi we don't get this chemo initially because it's more expensive and we know how cheap insurance is.
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Yes, if you can get a good reduction in tumor burden from Abraxane, kaayborg, that might make it possible to safely do a pre-trial washout or Y90. Your onc's patients who did not do well with Y90 -- were they all sent to the same IR? Maybe he/she isn't so good...
Similar to Lalady's results, dropping markers by half each cycle is what Abraxane's (not as pretty) sister, Taxol, did for me. And left foot had the most numbness (now fine).
Cive, how stupid and frustrating that Xeloda is not on the formulary. My current insurance formulary does not have any of the non-steroidal aromatase inhibitors. How crazy! Fortunately (?) for me, they are not what I need right now, anyway.
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Hi Ladies,
Popping in with a question. Have any of you had Abraxane after failing on Taxol? I’m thinking ahead while I wait for results on the latest CT scan. Xeloda may not be working either but Taxol got the big ‘fail’ at the beginning of my Stage IV diagnosis. Since they are both taxanes I wondered if Abraxane would be off the table. My MO has mentioned Afinitor but I am not seeing many signs of success with posts on the site.
Pat
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I would think that trying Abraxane within less than a year of Taxol failing would not be the best plan. But maybe later. And use something in a different class right now. Will they do any tumor genomics for you? Or at least check ER PR Her2?Is Faslodex or Aromasin/Afinitor under consideration? Or a different chemo like Gemzar?
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kaayborg: have you been on a PARP drug? Some research coming out says works in TNBC. There is a trial site in Ohio. Niraparib with keytruda. Trial NCT02657889. Olaparib has been used in other studies. I think you might be able to get a PARP drug not on trial as well.
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tomorrow marks my 5 year metavivor date. The 13th of this month is my 7 year diagnosis date. I had brain surgery 3 years ago. And today, I am battling this disease fir the 4th time in 7 years. Lots to contemplate.
Thank you for being such a wonderful source of support. It’s nice to not be alone.
I am hopeful that the results of my CT scan on the 11th finally break my streak of bad news in December.
Best wishes to all of you.
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Leftfoot, congrats on the 5-year milestone! I hope your CT results bring positive news.
Sadie, I don't know about Abraxane specifically but Taxotere can work for someone who has failed Taxol. There is not always cross resistance among taxanes.
I found out yesterday Abraxane has caused me to get shingles out of the blue. This was never on my radar as an otherwise healthy 41 year old. The pain from shingles makes my worst days on Abraxane feel like a breeze.
With the questions about washouts and trials, would a 3-week washout, for example, mean someone could receive chemo that is administered every 3 weeks and start the trial after that last infusion/at the same time one would be about to have the next chemo? This would be assuming the paperwork and approvals are all lined up and ready to go.
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Leftfoot, those are all impressive milestones. Keep going! You are definitely not alone.
JFL, I got shingles a short time after Taxol. I contacted three docs in an effort to get a prescription for an antiviral right away. I actually sent a photo and spoke to my onc on the phone, and she called in the prescription. I hope you have one. The sooner, the better. I mean same day.
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Leftfoot. 5 and 7 years. Pretty awesome. I hope your scan results are good ones!
Babd
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Leftfoot, 5 and 7 years is a big milestone! We are all pulling for you to have stable scans on the 11th.
JFL, Shetland is right. Get the antiviral right away. If not given within a few days, it isn't effective. I had shingles too a few years ago, after radiation, but the antiviral kicked in and I didn't have a bad case of it.
Just finished cycle 2 of Xeloda, and must say I'm looking forward to not being so nauseated this week.
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Metaviver. That is a new word for me. So, I'm a one year metaviver. My scan is in January so that I can have a drama free December. Last December was a drama nightmare. I want no repeats of that month.
So far, so good. I've been in my happy place all four days of December! You all know where that is......with my family. I got to see my grandson in his first gymnastics meet. He did great, he won seven gold medals! Unbelievable. First on every event and he's only six. Wow. And, my sister and brother came down from Oklahoma for the weekend. Our birthdays are very close together, so we like to have a triple birthday celebration. Also, they helped me with some projects around my house and all my Christmas decor is finished. On Tuesday, I will watch my granddaughter in a musical. It's called Dear Santa and she has one of the main parts. Yes, both of my adorable grandchildren are very talented. And, I would brag on them even if they weren't.💖👦👧😍
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Shetland and Lindalou, thanks for sharing your experience with / information about shingles. Fortunately, I did receive a prescription within an hour of telling my DH I suspected shingles on Sat morning. I don't have my MO's cell but DH does (they are colleagues at same hospital) and sent my MO a photo and MO faxed in a prescription right away. I had pain and itching and very bad flu-like symptoms all last week, keeping me up all night every night, but the shingles themselves didn't appear until Thursday night or Friday morning. I thought I had the flu and my blood counts would be tanked and my Fri chemo would be canceled but all labs were normal. I also thought I had a bug bite without a bite mark before the shingles popped up. Would not have done chemo if I knew I had shingles. Flu-like symptoms disappeared within 24 hours of starting anti-virals. Just dealing with localized pain and itching now although it still kept me up all night last night.
Lindalou, I hope cycle 2 of Xeloda treats you well. Definitely my “favorite" of all meds I have had to date, due to strong efficacy and reasonably manageable side effects. I hope the HFS remains tolerable or doesn't show up at all.
Grannax, your grandson is a champ! Glad you are having such rich times with family this holiday season.
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Congrats Leftfoot, but mostly I want a positive scan report for you. Praying ...
JFL - yes. Trials require you to be off other treatments before you start their treatment for some period. You are untreated for a period and if you cancer is aggressive, it's not going to work. The key as you noted is to make sure that the trial and paperwork is lined up so you start the new treatment as soon as the washout period ends.
If trials are something you want to do, you really can't wait until you get a bad scan result. There are strong arguments for moving to a trial while you are stable on some standard of care. At a minimum, you need to have a few trial ideas researched and vetted before the bad scan. Doctors often won't do this which is why I think these trial matching services might be a good idea ... work with them in a leisurely fashion to line up a few good options to plop in front of your doctor the day after a bad scan.
Otherwise it is a fire drill and the only real option is a FDA approved chemo that your doctor can prescribe without any hoops.
>Z<
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A new Shingles vaccine has just be approved that is not a live virus vaccine. It was NOT studied on people with decreased immunity (due to medications or other conditions) who are at most risk for Shingles. I am hoping that a study of immunocompromised people is in the works. In the meantime it is working very well for those who received it.
It is called Shingrix (zoster vaccine recombinant, adjuvanted) by GSK. You can read more about it if you want to at shingrixhcpdiscover.com.
I will be asking my MO to talk with infectious disease folks about this and hope to get it in the future.
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Hi guys! I don't usually post on here, but since I once had a liver met taken out, with great success to remission now., I wanted to mention to you all, that may not have many mets in your liver or very few, my pallative care doctor told me of a procedure that they are using with great success called "sphereing". They insert a catheter up through your groin and they release these little many beads the shape of little spheres that open when directed to cover the tumor,and cut off its air supply, and it dies and they remove it along with some margin clearances! She said it's good recovery time, and may help many many people, they are also using this with prostate cancer, apparently, it's been quite successful! Just thought I would share, even if helps one person! It's worth it!! Sending good thoughts and vibes! ~M~
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Claire, I am doing the happy dance for you and the A-train!!! How bad are the blood cells hit on this chemo regimen?
Kaayborg, Hartrish is absolutely correct about the PARP inhibitors. They work good with BRCA and triple negative...especially if you responded well with a platinum drug... (which you did with Carbo). Although I am not trip neg or BRCA, I have a BARD1 mutation that is closely related to BRCA. I had a complete response to Carbo, but had to stop due to low platelets. I am now on a trial with Oliparib and a WEE1 ihibitor. I have only been on the trial 2 weeks, so I don't know how it's working. They did get a CA 15-3 today that I am patiently waiting on. My tumor markers have always been spot on, so I am praying they are down!!! There is also a PARP study at Stanford if you were interested in looking into it. A friend from Inspire is on this trial as her oncologist is the head. They will evaluate you and if you get on the study, they will pay for your airfare and hotel once a month to get to follow ups. There is no way you have played your hand!
Leftfoot, Congrats on the milestone!! I just crossed my 3 year Metavivor date and pray I will reach 5 and then some!!! Sending positive scan vibes your way!!
JFL, shingles at 41....this disease sucks!!!
Robin
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Whoosh - caught up on 3 pages, if I don't check in daily it runs fast ahead of me.
Grannax - you asked "Bluebird. Are you saying that your MO believes that all of your TX has been ineffective? Including Ibrance and femara? That's scary. Did you have any response from IF? Does he think IF is not effective on anyone or just your tumors? He must be an "outside the box" type of MO. What does AA combo mean?" It's just me. I forgot about the Ibrance/Femara but that only worked a few months then quit, though I was left on it for 4 months. I believe the IF worked on the lymph node at the base of my thyroid, certain of that actually per the scan proof. So, basically he was referring to the Xeloda which I was on 8 months, he does not belkieve that the response I had was mixed - he believes I had no response and the radiation confused the other oncs (remember there were two traveling fill-ins and the primary that left and now this onc, oh bother) Also this onc says that it would be "Ridiculous" for me to have TACE or anything of the like when I have not even been on the chemo IVs. I don't know, I just don't know. And now I am really worried about going on the Afinitor/Aromasin when it can cause lung inflammation and this cough and these lungs don't need any help. I am back to partially passing out when I cough, like in Oct - April. Have to run.
Thanks for all the info everyone shares, it helps so much to read experiences.
Diane
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Bluebird, am I remembering correctly that you have a condition that may make radiation less desirable? And you have lung issues that make Afinitor seem less desirable? Your onc needs to not just follow a standard list or order, but consider you as an individual. Does this mean that aromasin, tamoxifen, and iv chemo are in the table? Do you have a recent liver biopsy to check ER and Her2? How about genomic testing such as Foundation One or Caris?
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Thanks everyone for all of your wonderful ideas. I am not planning on giving up anytime soon. I've just realized in these 2 progression periods I've had how incredibly fast this cancer of mine grows and the fact it leaves so little time to land the right treatment is very discouraging. I do wish I had smaller cancer load with a bit more room for error.
Z, you're advice about having things lined up is exactly right and I have been trying to abide by it. I have consulted with a specialist about Y90 and it was emphasized to me that the time would be right at progression with a stable liver. I'm not sure when that will be for me. Leaving a treatment that works to do it feels pretty risky. I'd have to feel that Y90 would be a home run. Leaving working treatment and coming back to it later can't guarantee it will work later. Cells may have changed and I would lose out on time gained on the effective treatment. Crystal ball would be nice. The procedure time and recovery before beginning systemic again could put me in peril, especially if it turns out not to work. My liver doesn't have much room for more inflammation. I am one pregnant women at the moment and this liver baby head will not stop pushing below my left rib cage. I've broken out the narcotics tonight. FYI: no fluids, just mad liver baby.
Parp inhibitors...I do really think that is something I need to try for. I"ve been told by two MOs that while I am not brca positive, I seem to have a similarly high mutation load and so might respond similarly. Lost out on the immuno/parp trial at NIH and now am ineligible b/c of pembro. I should look into finding another. I will check out the study at Standford for sure. If they'll fly me out that's doable I guess. Quite the distance still, though.
I emailed my onc and she is open to discussing the idea of gemzar and abraxane, since I did not progress on gemzar but stopped due to toxicity. Toxicity and insurance coverage would be the hurdles. I like the idea though. Thanks so much for the suggestion. Anyone with experience on how many times insurance company's tend to be willing to approve drugs off-study?
We are sending all info out to Sarah Cannon tomorrow. I do hate it's randomized but I think IMMU-132 is worth the shot.
I have appt. and eribulin/pembro set up tomorrow unless my liver numbers have shot up and I kind of think they may have. At last progression ALT was in 80s and then shot up to 140s 3 days later. Friday it was in the 80s and I worry it might be following suit based on my increasing discomfort. I think the plan is abraxane if we don't feel we can wait longer for pembro to work. Anyone know an average for how long you must be on immuno before results are noticeable. I seem to get chemo results right away. For gem/carbo and eribulin it was evident after the first one or two treatments (not cycles).
Speaking of numbers...I don't have a good gauge on when you're really in trouble. At dx I was 297 ALP 67 ALT 102 AST 0 .5 Bilirubin direct. Worst at last progression was 185 ALP 105 ALT 143 AST 0.1 Bilirubin direct, and now I am 346 ALP 67 ALT 81 AST 0.2 Bilirubin direct How does this compare to where you ladies have been at progression?
Congrats on those years Leftfoot. Keep them coming. JFL, that's terrbile about the shingles. Makes me so excited to start abaxane but I'll still do it. Just want to live!
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Micmel - thanks for the sphering tip. Once a liver metster always a liver metster, I say.
Bluebird - the problem with waiting for TACE until after several lines of chemo is that your liver is impaired and you are at greater risk of liver failure. To me, it seems ridiculous to do IV chemo before TACE if the primary issue is liver mets. Why would you subject your whole body to chemo when the cancer is in the liver and can be effectively treated locally?
All I can say is that my MO was clueless about TACE and had it confused with ablation therapy. I am not an expert either but I have learned one thing. It is critical for all of us to talk to someone who actually does these treatments sooner rather than later to learn from an SPECIALIST when they should be done.
Kaayborg - My only thought to add to your thoughtful post is that if you can organize a bit of SBRT radiation treatment somewhere it might supercharge the PDL-1 inhibition. I don't know you have time as it sounds like you are ready to move on. If that's your instinct, I would not second guess.
>Z<
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