How are people with liver mets doing?
Comments
-
Bluebird, there was someone who used to be on the boards who did well on Navelbine for over a year - and she had liver, lung, brain, bone mets. She said the side effects we the most manageable of any chemos. It seems everyone has a different experience but Navelbine has a lot of potential. Is the oral version available to everyone?
0 -
On the subject of ascites, I though I would mention my wife's experience with it. Her liver mets were multiple and diffuse. It caused both a near total blockage of one of the hepatic arteries, and probably some increased internal resistance to blood flow. That resulted in hepatic hypertension, which both caused ascites and damage and distention of various veins, such as umbilical, tracheal, and permanently enlarged her spleen.
They put her on a combination of two oral diuretics, which were supposed to counter out each other's side effects, and also on an injection blood thinner. The blood thinner we suspect caused significant thinning of her hair, which recovered after she quit the blood thinner. She also had a line installed so we could drain the ascites at home. At her worst, we were draining nearly a gallon of fluid out in a week. Eventually the xeloda she was on shrank her tumors and the ascites ended. Took many months. Her spleen remains enlarged, and she once had a significant bleed from an esophageal blood vessel that broke.
So, in summary, the things that she did were:
1) Blood thinner (if you go on a blood thinner, consider researching one that doesn't cause hair loss, such as fondaparinux.);
2) Diuretics;
3) Line to drain ascites at home;
4) success through successful response to the chemo drug.
0 -
Thank you husband, I appreciate the advice so much. Can I ask if your wife is ILC? What a relief for her to get rid of this particular symptom. It's a misery for sure.
My Onc decided after 3 rounds that Xeloda wasn't working for me so I am on to Gemzar. (As soon as Cobra decides to approve me, 3 weeks with no meds now) All the complications from the ascites sounds pretty scary. I have to wonder why my Onc has no other suggestions for helping me out. I am so miserable from Saturday to Tuesday, my drain day. Only Wednesday, Thursday and Friday are decent anymore. I will ask him about these tips as soon as I am allowed to see him. No insurance, no care....
0 -
Pretty sure it was invasive ductal. Its been quite a few years since that subject came up. She initially had a double mastectomy, FEC-T chemo and rads. The metastasis showed up approximately 2 years ago, roughly 6 years after initial diagnosis with stage 3. Oddly, the ascites didn't happen until she started treatment with xeloda. The mri confirmed the blocked of the artery prior though. So something got worse initially while she was on treatment.
Fondaparinux might be the best blood thinner for not causing hair loss. My wife was on dalteparin, and it definately thinned her hair.
0 -
Thinning hair is the least of my concerns right now! Are her ascites still just gone? That to me would be a miracle......
0 -
Yes, her ascites are still gone.
0 -
Oh Artist I can't believe this is allow to happen! Wishing you relief soon!
0 -
Momallthetime; thank you for the good wishes and right back at you!
Minnie; best wishes to you too! I was wondering what Tx you are using now that your tumour has shrunk so much?
JFL; thanks for the clarification and wow, that must have been a very difficult time for you, hope all is going well with your current Txs.
Vilma; I would be most interested to hear the results of the trial as I was interested in metformin and why it works for some people but not all. Also, wondering if you are using CT scans in BC or another type of scanning for your checkups.
0 -
Esperer, I will let you know about the trial as soon as they tell me. In April will be my first checkup since the diagnosis. Diagnosis was with bone scan and then ct scan. In April will be my first follow up appointment and I will have a ct scan before that. What scan are you doing?
Thank you JKL, that makes sense, hopefully BC will be approved soon
0 -
I had a PET on Saturday and my DH pulled the report today. At least one area, maybe several, looked slightly larger but the SUV on everything in my liver is a bit down from my last PET 3 months ago. I don't know what to make of the results. Over the last 3 years, progression has always been lead by increased SUV . . . . not sure what my MO will do about Abraxane. I suspect he will want to move on. My appointment is in a week and a half. I should probably call him beforehand so he can think about whether he wants to keep me on Abraxane or not. I don't want to show up for treatment and then to be told we need to switch and need more time to think about next step. At any rate, now is probably time to do Y90. Feeling down.
0 -
JFL - Just reading your post, that would mean that your mets continue to grow but they are growing slower. I don't know if you switch treatments or not in that scenario. I do think talking with a specialist about Y90 is reasonable. I wish the results had shown a more clear response as it would make the path forward more clear. Interested in what your onc has to say. Hugs. Thinking of you.
>Z<
0 -
Hellou ladies, this is my first post here, even though I am reading your conversation and found many usefull info. Especially Zarovka...whoa, you are such an expert and knowleable lady
. Vilma I am same as you treated only with hormonals-Exemestan for now. After four years (stage one, no nodes, grade 3, chemo, mastectomy and tamoxifen) i had recurence in the liver (one slowly growing, grade 1). I had resection and after due to low grade MO recomended to continue with exemestan (if progression they might add ibrance. I added some adjuvant treatment in Austria (I live jus next border in Slovakia) which includes lowdose imunoterapy (opdivo, vit C, taurolidin, alpha lipooic acid), local hypertermia and one week of fever with Interleukin. The doctor has great results with this concept. All the best of health to you. MakiPS Do you know that Zarovka in Czech language means lightbulb :
0 -
JFL mixed response, I think they call it. But, the liver mets, uptake was less? Where are mets that had more uptake? I hate that you have to wait so long to get MO opinion. Of course you know I've had no uptake in liver mets since y90, That's seven months!
Artist. Did I read correctly that you have no insurance? That must be horrible for you.
Z I love your Czech. Lightbulb! Welcome Maaaki.
vilma. I'm glad you're finding friends and knowledge on this thread.
0 -
Kaylynne I know by now I’m probably a bit of stranger here I do read regularly but as with many others have not much to add to all of the expertise here😊. Today I’m jumping in.
I have had progression in the liver twice shortly after finishing Taxol and being on nothing for a month and prior to that last April. I kind of know when it’s starting I feel nauseated and have literally no energy. Just started Xeloda in Nov. not happy about it but it is working. Liver mets are disappearing and my TMs are steadily coming back down to normal. One bit of advice get yourself a ton of Urea cream for your hands and feet. Many woman have no side effects I’m one of the lucky ones who does. Hands peeling. And feet blood blisters fun times😜. Urea cream helps a lot. See my onc today so she can tell me about my last scan which she said over the phone was good. You got this Kaylynne believe in whatever you’re given.
Momallthetime each time I come back to these threads I am hoping to here that Dani has found the magic drug and that she is feeling better. Your strength through all this is astounding take care of yourself too☺️. I still believe that magic treatment is out there for her and I hope in my heart she finds it soon and has some good days.
Babs so exciting that your daughter is coming such joy. Make lots of pics to share 😊.
Z I’m not happy to hear about your port issues , I’ve never had one so can’t imagine the pain in the rump all that would be. Knowing you though I’m sure you will find a solution soon. I have never known a more proactive persona that yourself☺️.
Dumb question time now what is Y90 haven’t heard it mentioned in Canada yet? Just wondering if I may be a candidate.
Wendy
0 -
Thank you Wendy for the encouraging words. I hope I am as lucky as you with Xeloda. I purchased 3 bottles of urea hand cream and 3 bottles of regular urea cream. I put the hand cream on several times a day and the foot cream at least 4 times. I'm sorry you have to deal with the peeling and blisters. How long were you on Xeloda before this happened? Let us know what your onc says about your scans. Praying your are NED. Wouldn't that be something?
Kay
0 -
Oh, one more thing Wendy. What is you treatment schedule and how long have you been on Xeloda?
0 -
hello - I’m another that does not post often, but enjoy reading regularly, and learning from everyone’s wealth of knowledge.
I just received scan results after being on Faslodex/Kisqali for 8 weeks, and I have significant progression in my liver. This is the 3rd treatment that failed me since MBC dx just over a year ago... 1st was Ibrance/letrozole, 2nd was Gemzar. I had the Guardant test (ordered by my 2nd opinion MO), and results showed that Faslodex should have worked for me...no such luck. This is why my MO does not usually order these. The results, more often than not, are not actionable.
My MO recommended moving on to either Halaven or Xeloda, and I have chosen Xeloda. Just waiting on Insurance approval, and hope to start by the end of the week.
Kaylynne - what kind of urea cream did you buy? Amazon has a few different kinds, and hoping to get the right kind...
Prayers and well wishes to all of us that we find a treatment that gives us a nice long run. And thank you for allowing me to lurk and learn.
0 -
KC1010 - I got these from Amazon. I've only used them for a week. I am not sure how long before the peeling and blisters happen. Keeping my fingers crossed that this is good stuff.
Excipial Urea Hydrating Healing Lotion, 6.7 Ounce, (Pack of 3)Sold by: Deals $ave Product question? Ask Seller
Return eligible through Mar 16, 2018
$14.21
Buy it again
Excipial Rapid Repair Overnight Hand Cream, 3.4 Ounce, (Pack of 3)Sold by: Supreme Bargains
Return eligible through Mar 16, 2018
$17.48
Buy it again
0 -
Wendy. Y90 is radio embolisation. I don't know if it's available in Canada. I had mine done in April and May 2017.
The interventional radiologist did the procedure and it's similar to an angiogram. Basically, he was able to insert y90 spheres directly into my liver tumors. I know they have to be able to visualize the liver mets by CT or PET. My MO is the one who referred me to the IR.
I wrote about the procedures and SE on the local treatment thread if you want to read more detailed info. I'm fortunate to have had an excellent outcome, no uptake has been seen since I had it done. I still have mets in my lung and chest that are still active but stable.
I hope you find out that it is covered in B.C. and that you might be a candidate.
0 -
I was turned away from treatment today foe a suspected case of shingles. I’ve had s rash for over a week. No blisters no pain. Pretty sure it’s not shingles but have to wait s week now before going back in.
A little frustrating. I am hoping now that I am right and I didn’t expose people to that awful virus by mistake.
Of course, I live with an ER physician and we’ve been watching it. He doesn’t think it’s shingkes either.
Best to err on the conservative side I guess.
0 -
Left, I had treatment induced shingles a few months ago. If yours is anything like mine, you would DEFINITELY know it was shingles - meaning major itching and major pain that interrupts sleep. And definitely you would have mini blisters after a few days. I have a hunch it is not shingles either! Sorry you were turned away from treatment. Very frustrating. Other than someone who hasn't had chicken pox, my understanding is that you can't pass shingles on to others.
0 -
Z and Grannax, thanks for your responses. Z, yes that sounds like it - growing, but slower. That confuses me as mine typically are at full speed or in park. On Abraxane, they have slowed to a simmer, but the stove is still on
I called IR today and was told I need to provide my medical records for him to review before I can schedule an appointment. Trying to get him those by tomorrow so this process can move along quickly. I have to go in person to get the PET records which is a major hassle given that I work 50 mins from my home/cancer center. I suspect MO will want me to move to Doxil.0 -
interesting article re expanding immunotherapy
"The trial is written for all comers," Dr. Sharma said. "If we have learned anything, it is that it is not the tumor type we are treating — it is the immune system."
https://www.nytimes.com/2018/02/19/health/ovarian-cancer-immunotherapy.html
Doctors Said Immunotherapy Would Not Cure Her Cancer. They Were Wrong.
By GINA KOLATAFEB. 19, 2018
Oriana Sousa, 28, who lives in Marinha Grande, Portugal, had a rare, aggressive form of ovarian cancer. Traditional treatments failed, but with immunotherapy her tumors shrank so much that there is no evidence of disease. CreditDaniel Rodrigues for The New York Times
No one expected the four young women to live much longer. They had an extremely rare, aggressive and fatal form of ovarian cancer. There was no standard treatment.
The women, strangers to one another living in different countries, asked their doctors to try new immunotherapy drugs that had revolutionized treatment of cancer. At first, they were told the drugs were out of the question — they would not work against ovarian cancer.
Now it looks as if the doctors were wrong. The women managed to get immunotherapy, and their cancers went into remission. They returned to work; their lives returned to normalcy.
The tale has befuddled scientists, who are struggling to understand why the drugs worked when they should not have. If researchers can figure out what happened here, they may open the door to new treatments for a wide variety of other cancers thought not to respond to immunotherapy.
"What we are seeing here is that we have not yet learned the whole story of what it takes for tumors to be recognized by the immune system," said Dr. Jedd Wolchok, chief of the melanoma and immunotherapeutics service at Memorial Sloan Kettering Cancer Center in New York.
"We need to study the people who have a biology that goes against the conventional generalizations."
Four women hardly constitutes a clinical trial. Still, "it is the exceptions that give you the best insights," said Dr. Drew Pardoll, who directs the Bloomberg-Kimmel Institute for Cancer Immunotherapy at Johns Hopkins Medicine in Baltimore.
The cancer that struck the young women was hypercalcemic small cell ovarian cancer, which typically occurs in a woman's teens or 20s. It is so rare that most oncologists never see a single patient with it.
But Dr. Douglas Levine, director of gynecologic oncology at New York University Langone Medical Center, specialized in this disease. A few years ago, he discovered that the cancer was driven by a single gene mutation. The finding was of little use to patients — there was no drug on the horizon that could help.
Women with this form of ovarian cancer were sharing news and tips online in a closed Yahoo group. Dr. Levine asked to become part of the group and began joining the discussions. There he discovered patients who had persuaded doctors to give them an immunotherapy drug, even though there was no reason to think it would work.
The women reported that their tumors shrank immediately.
The idea behind immunotherapy is to dismantle a molecular shield that some tumors use to avoid an attack by the body's white blood cells.
The immune system sees these tumors as foreign — they are fueled by hundreds of genetic mutations, which drive their growth and are recognized by the body. But when white blood cells swarm in to attack the cancer cells, they bounce back, rebuffed.
Immunotherapy drugs pierce that protective shield, allowing the immune system to recognize and demolish tumor cells. But the new drugs do not work against many common cancers.
Those cancers are supported by fewer genetic mutations, and experts believe that the tumor cells just do not look threatening enough to the body to spur a response. So the immune system leaves them alone.
Lung cancer, a genetic type of colorectal cancer and melanoma have huge numbers of mutations, and immunotherapy drugs often are successful in treating them. Cancers of the prostate, pancreas, breast, ovaries — and most other tumors — carry few mutations.
"These are the cancers that rarely respond," Dr. Pardoll said.
The idea that the drugs might work against something like hypercalcemic ovarian cancer, which is fueled by just one genetic mutation, just made no sense.
"For the vast majority of cancers, there is an amazingly clean correlation between response to therapy and mean mutational load," Dr. Pardoll said.
Ms. Sousa returned to work as an organizational psychologist and works out vigorously every day.
But there were a few oddball exceptions. An unusual skin cancer called Merkel cell carcinoma responded to immunotherapy, scientists found. It is caused by a virus, and researchers suggested the infection itself draws the attention of the immune system.Mesothelioma also responded, perhaps because the asbestos that caused it also inflames the immune system. And some kidney cancers responded to immunotherapy treatment; no one knows why.
And then came a handful of women with a rare ovarian cancer. Oriana Sousa, 28, a psychologist in Marinha Grande, Portugal, was one of them. She found out she had cancer in December 2011. She knew something was wrong — for several months she had been feeling tired, constipated and endlessly thirsty. She began vomiting and had abdominal cramps. But her doctors told her she was fine and not to worry.
Finally, her aunt, a nurse, suggested she see a different doctor, who performed a CT scan of her abdomen. It revealed a huge mass. The doctor operated to find out what it was. Two days later, he gave her the bad news: Cancer, and a really terrible form of it.
For the next four years, Ms. Sousa's doctors tried to control the cancer, giving her rounds of chemotherapy, radiotherapy and surgery. But every time, new tumors emerged.
"I suffered a lot, and I felt I had no life," she said.
Things are different now. In 2015, she finally persuaded a doctor to give her an immunotherapy drug, nivolumab. Immediately, her tumors shrank and continued shrinking as she continued with the drug — so much that her doctors now say she has no evidence of disease. Life has returned to normal.
"Generally after work, I go to the gym and do classes and work out," she said. "People who don't know what I have been through, they can't imagine I am an oncology patient."
What saved her? Dr. Eliezer M. Van Allen, a cancer researcher at Dana-Farber Cancer Institute, has come across one clue.
He found that a gene mutated in kidney cancer was sort of a master regulator of other genes, controlling which were turned on and when. But the regulated genes were normal and did not produce proteins that the immune system might recognize as abnormal.
Nonetheless, patients responding to immunotherapy were the ones with the master gene mutation. "We saw this result and weren't sure what to make of it," he said.
Dr. Levine and his colleagues found the same phenomenon in patients with hypercalcemic ovarian cancers. One explanation, he and Dr. Van Allen said, is that the immune system may recognize that cells in which genes are erratically turning on and off are dangerous and should be destroyed.
"That is strictly hypothesis," Dr. Levine cautioned.
One thing is clear, though: When pathologists examine these tumors, they find white blood cells in them — as if the immune system were trying to attack. And that finding has led both Dr. Pardoll and Dr. Padmanee Sharma of M.D. Anderson Cancer Center in Houston to plan new clinical trials.
They know that immunotherapy fails most patients, even those with cancers that are most likely to respond. So they have set out to create a test to determine who might respond to immunotherapy and then treat those patients — regardless of their cancer type.
Dr. Sharma's study, funded by the Parker Institute, is getting ready to enroll patients. The researchers will look at pathology slides of patients' tumors to see if white blood cells are worming their way into the cancers. If so, the patients will get an immunotherapy drug to help activate their white blood cells to attack the tumor.
If there are few white blood cells in the tumor tissue, patients will get a combination of two immunotherapy drugs to help move more white blood cells into the tumor and help them attack.
"The trial is written for all comers," Dr. Sharma said. "If we have learned anything, it is that it is not the tumor type we are treating — it is the immune system."
At Johns Hopkins, Dr. Pardoll and his colleagues are planning a similar trial. They will be looking for tumors — it does not matter what type — that have a protein, PD-L1, on the surface that repels the immune system. Any patient whose tumor fits that description will get an immunotherapy drug.
It's a shot in the dark. But sometimes such a shot finds the mark, as Ms. Sousa will tell you.
"Incredible things happen, and against all the odds," she said.
A version of this article appears in print on February 20, 2018, on Page D1 of the New York edition with the headline: Cured Unexpectedly. Order Reprints| Today's Paper|Subscribe
0 -
LOVE that article, Lucia—thanks for sharing! Gives us a lot of hope that they’ll figure this thing out some day...hopefully sooner rather than later!
Thanks for the cream info, Kaylynne—I’m off to Amazon to place my order.
0 -
Yep. "If we have learned anything, it is that it is not the tumor type we are treating — it is the immune system." Unfortunately I think the "we" in that sentence includes maybe 3 doctors at the Parma Institute. I believe that any treatment that "works" in the sense that it gives an enduring response engaged the immune system.
>Z<
0 -
Immune therapy is exactly what I am on right know. I have got two infusions of nivolumab (my PD L1 receptors were slightly overexpressed) and now I am at hospital for fever week induced with interleukin everynight. Tonight I had fever 40.1 C. This dr. has grest results
0 -
Kaylynne I’ve been on it for three months now . They started me on a low dose (for my height and weight) at 1650 twice a day. Then when I went on holiday in February they lowered it so I wouldn’t suffer the feet thing so bad to 1500. Saw my onc yesterday my lung met is gone, my bones are pretty much healed or stable nothing new. My liver tumour which was 5cm in October is now five tiny dots (so still there). My tumour markers went up ten points she thinks it’s because we lowered the dose or I have a cold or whatever. Now I’m on a higher dose of 1800 hopefully to finish up the last of it. She was very pleased so far. I found epsom salt baths helped also to remove the toxins from my hands and feet. Not NED but I’m working on it.
0 -
Maaaki, that sounds very interesting. Please keep us up to date on the results. Is this with a private clinic, or part of a clinical trial?
0 -
Vilma, to answer your question I have a CT scan every three months along with blood work. My family doc sends the reports via email and reviews this with me, and then I have an appointment with MO to discuss any changes. Two more weeks.....
Thanks Lucia for sending the article, it sounds hopeful. I would much rather use my own immune system.
Wendy/Grannex thanks for sharing and providing information on Txs that are working well. Will keep these in mind for future discussions with MO.
Warm wishes to all,
0 -
Wendy3. That's amazing result. 😁
0
