How are people with liver mets doing?
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Could someone help me? I am Triple Positive and was on taxatore, perjeta, and herceptin. Now I am on herceptin, perjeta and tamoxifen. I have bone and liver mets. I just got my liver panel back and my AST is nine points higher than it should be. three weeks ago the whole panel was normal. what does this mean? Growth already?
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kaayborg, I am hoping for the best with your ongoing treatment. I have no great advice. Please know that I think of you often and this is all so effing unfair for you and your family.
So I had another ultrasound of my arm, shoulder and upper abdomen and a CT scan of my chest yesterday to try and find what my onc thinks is a blood clot. Didn't find one but discovered that I've gone from 4 tumors to 7 tumors in my liver, the largest increasing from 4cm to 7cm. My last PET was Nov 2nd. I was without treatment waiting for a trial from Oct 31 thru Dec 7 then went on gem/carbo. My onc thinks the growth happened during the time I was not on treatment instead of while I have been on gen/carbo. I feel like she is giving me false hope. She wants me to do 3 more treatments and then another PET. I am waiting on my liver enzyme results to come back today. Last week they were around 110 and 228 I think. She put me on 2mg daily of Warferin because she still thinks I have a clot that can't be found. What are y'alls thoughts about my progression?
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Kaylynne - I agree with your onc. It's not false hope, it's just too early to write of gem/carbo. There is a lot of not knowing and patience with cancer. It's pretty tough. The clot possibility is very scary and needs to be watched carefully.
Lisa - chemo can irritate the liver and drive up liver markers. i did a very brief course of chemo and my liver markers went up. scans eventually showed regression in the tumors during that period. scans are the only thing you can really trust.
>Z<
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Lisa, I think I can ease your worries. Liver enzymes fluctuate normally and even a healthy person can experience an enzyme slightly elevated from time to time and this is not a concern. I remember feeling the same way when a similar situation happened to me and my doctor said the above. Thought for sure the numbers would be climbing but it went right back to normal and stayed that way for a long time. Additionally, now my numbers are all high and when they fluctuate by 20 or so it is considered stable. If over time they continue to climb that is a different story but I really think right now, you have no reason to worry.
My AST had climbed 80 points to over 200 in just 3 days and this had me in a panic but today it is back to where it was. Mo said it was due to the dehydration that had me try to raise hemoglobin for the trial. I am much relieved. Liver enzymes are funny things.
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Kaylynne, I agree with Z. TNBC is nasty and grows fast. I have no doubt I have growth from my 4 weeks off treatment. We are doing a scan now as a baseline so we can better gauge effectiveness of these next 2 cycles of pembro/eribulin.
I think you're right to give it a bit more time but do watch your symptoms carefully and convey them to your onc. Hoping your enzymes come back with some more reassurance. If they are significantly climbing still, I might be less ready to give gem/carbo more time.
We're kind of in the same boat here...not knowing for sure if treatment is not working or if time off caused our peril. Trials...grrrr.
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Ladies it sounds like so many of you are in the middle of serious decisions. I hope for the the best TX for you. Z It sounds like you are going to Japan again in February. Is your daughter going with you this time, too?
Shetland Pony. When I saw my PCP on Tuesday, she did not hear pneumonia. But, I have not seen anyone since then. I don't hear any rattling when I breathe. I'm on day four of Tamiflu. Yesterday my fever wasn't as high, so maybe I'm going the right direction. But, I have lost my voice so I sound worse. All the fluid/mucus seems to be in my throat now.
I'm getting bold since I've met/read all of you. Ha. Yesterday I called my MO office to let her know I have the flu and to reschedule my appt again. I did NOT ask if I should stop TX because I decided it didn't matter what her answer would be! Can you believe I did that? I decided I need the two week break to completely get over this flu thing. I'm supposed to start today. NOT
Maybe, turning #70 has made me bold. Ha
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Grannax - that's the way to play it. And exactly what I did. I took breaks when I thought I needed it and let them know later. There is no more solid basis in the data than what your gut tells you. I they have opinions they are just being patronizing. Take care of yourself.
I am indeed returning to Japan in February and my little munchkin is coming with me. She's going to have 50,000 airline miles by spring, poor thing. Quite a lot for a child in school. She's partly homeschooled through online programs and pretty disciplined, so it's working out. In the meantime I am heading to Mayo Clinic Rochester for some radiation to scare neo-antigens out of my tumors before returning to Japan. On hold at the moment to get established as a patient in their breast care clinic with an breast cancer oncologist with a speciality in immunology??!, if you can believe it. Rare as unicorns, these beasts.
>Z<
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Hi, I just came on to give some good news re Xeloda. ShetlandPony, I saw you are doing well on Xeloda! I am so happy for you! It is working for my sister too! Her scan results came back today. She has been on for 3 months now and her first scan after 6 weeks as well as this scan both showed a 50% reduction of liver tumour size. We are so happy and grateful. She is honestly loving this drug. Her hair has grown back so much she got a haircut this week! It has worked out better for her than Taxol, because she is afraid of needles and her blood counts kept crashing resulting in dose adjustments, and finally got coronary vasospasms resulting in a final dose reduction, then progression. Xeloda, without all these things, is working right now and it is a big relief.
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For those who are Triple Positive here is an interesting trial at the University of Colorado. Tucantanib, Palbociclib and Letrozole.
http://www.coloradocancerblogs.org/cu-cancer-clini...
We think hormone receptor and HER-2 signals are coming together to help cancer cells resist treatment," says Shagisultanova. "The CDK4/6 inhibitor palbociclib can block these converging signals in the nucleus. We believe that if we can inhibit the signaling deeper in the tumor cell using this triple blockade, patients will have longer lives and better quality of life."
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Z, if you're willing to share, I'd be interested in knowing who your onc is at Mayo. That's where I'm being treated. We haven't explored immunotherapy yet, but I'm interested in knowing more about it. I'd like to know who there is working on it. For what it's worth, I have nothing but good things to say about the care I've received there.
Rose
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I am still trying to make an appointment. I will let you know where I settle when things fall in place. Pretty psyched to finally follow my own advice and become a patient at one of the leading centers.
>Z<
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Great! If there's anything I can do for you while you're in Rochester, let me know. I live about an hour away but am often there.
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Grannax, good for you! It is your body and you call the shots. I have never canceled a treatment but did the same thing as you my last chemo round. I have been sick with one thing or another for the last few months - just as my shingles were healing up, I came down with a cold/sinus infection type-bug. I finally said enough is enough and canceled without asking/telling my MO. I just rebooked for the next week and he figured it out when I arrived.
Shetland and IrishTwin, so happy to hear your positive results with Xeloda! Shetland, it certainly seems that you are having much stronger results with chemo treatments as opposed to hormone therapy. I had an initial good run on Aromasin/Faslodex/Ibrance but since then, I have no confidence a hormone therapy will work for me again.
Z, the IR at Mayo Clinic sounds promising. I didn't know they had immunology specialists. I was given a recommendation for an IR to do Y90 in my state from the head of radiology at a top 10 cancer center elsewhere. I ended up opting for a colleague of the person recommended when I found published articles of the colleague discussing the abscopal effect and that the future or IR is linking it with immunotherapies. He had me at 'abscopal'!
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Yeah. Any RO who says abscopal makes my heart flutter too. But the truth is radiation oncology is not rocket science, it's just a matter of establishing trust and confidence that the practitioner can calculate the correct dose and hit the mets. Sounds like a great decision.
>Z<
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I don't even know what abscopol means, but if it makes your hearts flutter, Z and JFL, I going to listen and learn. I'm thinking that it will make your tumors more receptive to immunotherapy? Possibly, makes immunotherapy work more effectively? Therefore, giving you a better chance for remission or even cure?
I'm very interested in your conversations, although I only understand bits and pieces. It's like you two are exploring the world of what seems like futuristic options for MBC. Only, it's now. That's mind blowing.
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Hi Everyone,
Here is an interesting article from MD Anderson on the absocol effect and clinical trials it is doing. They have been doing trials in non small cell lung cancer and a very difficult to treat thyroid cancer and are close to trials for mbc.
The article explains how the absocol effect works and how they are treating using it. Basically the sbrt radiation plus immunotherapy turns your own tumors into vaccines against your cancer. Glad to see it is in clinical trials. Every day new hope.
https://www.mdanderson.org/publications/oncolog/ja...
Mary
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And yesterday the FDA approved olaparib (a PARP inhibitor) for those with BRCA+ breast cancer.
Good things are happening!
http://www.onclive.com/web-exclusives/fda-approves...
Mary
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Marylark - nice article.
Fighterm on inspire started a thread on the abscopal effect that is well written and worth reading. Abscopal just means "Out of field" in the sense that the radiation treatment has an effect beyond the field that was radiated. This has been understood for a while but a decade or so ago they figured out that the out of field (abscopal) effect was mediate by the immune system. So of course then you start thinking what radiation protocol triggers that? What can you do to promote the immune response? It's not common but it does happen enough that it is clearly A Thing. So why does it happen? Are there interventions that would increase the frequency?
Grannax - your team is awesome. I am impressed with your treatment protocol and following your progress closely. When you are in good hands, that is the best thing.
>Z<
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Liver enzymes came back at 88 and 140, a significant decrease from last time. I'll take the good news.
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WOOHOO, Kaylynne, I love to read good news.
Lynne
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Woo hoo! That is wonderful news indeed,. Kaylynne. So glad to hear it.
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Kaylynne - Yay. Thanks for letting us know.
>Z<
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Girls-
I have a question and need your advise. I was diagnosed with Stage IV with bone and liver mets in Sept. So I am new at this. I live in a rural area and saw my local MO. He is great. But Oct I received a second opinion from a larger cancer center- well respected-about 100 miles from my town. Right now I am on therapy that both docs recommended--which I feel good about since they both advised going this route. I checked with my insurance company and they said they have no issue if I continue going to both docs for follow-ups. I called the larger center - which would kind of be the 2nd in line- today for a follow up appointment and was told by the nurse that they should only see me when there is progression of the disease. I should use my local MO only until then. I liked the idea of 2 sets of eyes on my case to PREVENT/HOLD OFF progression. I feel like if we wait then it is like closing the barn door after the horse is out.
So........ what do you think??? Does any one out there have 2 MO's to discuss your case????
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Candy - On the one hand, the nurse doesn't make that decision. You can just say thank you, the week of January whatever is best for me to come for my appointment. If that is what you need, then go.
On the other hand, I am inclined to agree with the nurse as long as the second opinion doc has signed off on the monitoring protocol. How you monitor and determine progression is a matter of opinion. In general, I don't think you need to be monitored by 2 doctors unless there is an issue ... side effects not resolving, progression, possibility of switching treatments before progression.
>Z<
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Kaylynne: wonderful news
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I'm home today, which is a good thing. Flu around here also. Two of my DD's have it. Tamiflu is a life saver. Dani has to go tomorrow for another round of embolization, but she's feeling weak, we'll see early in the AM i hope they work with her. We waited for this, because the docs had time off due to the new year. Hopefully i'll get the low down on the dosage and exactly what chemo she is on this week when she goes in for the tx and i'll post it.
Zar where you vacationing? Unbelieavable how every step of the way something is gotta be. The port did not bother D much, but once out, she never wanted it again. Now she is a professor in veins. Don't mess with her. Whoever takes her blood or gives her the infusion better listen to her, first she's always right, and if they mess up, let's just say I don't know her.i really hope it works out for you.
Zar only you could pull off such a sophisticated plan. WOW sure hope you writing these stuff down. It's so exciting.
Kaylyne being off treatment and being on trials that were not really geared to Dani's well being, but to statistical numbers definitely messed her up. My opinion. So glad you are on this tx now. Thx for sharing the good news.
Artist I hate to say it but exactly, I've read books of doctors that WHEN they find themselves in the patient shoes their whole perspective changes. Just got this article, it's one example.
Kaayaborg so which chemo will you be on? These trials make me nervous. It might just be a better punch for you to be on chemo. Glad that you are home.I still remember when you went running up and down the stairs to get the HGB going. How is family life coming along? Are you able to teach this year?
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Lumpie yes, DNR is a good thing, my mom who could not be helped at the end of her life, and was very sick, we as Proxy signed her DNR, but I did read in books that even docs say once presented with a DNR at the Hospital and things are stressful, they might not try so hard, such as putting someone into the ICU etc…I know for sure in mom's case they did not want to send her to the ICU and I read this book just after she passed, and I was like oh my gosh…and again not so much in her case, because she was really at the end, but for someone that still could have hope it gets more complicated. I guess there is a lot of depends...
Aoibheann is that how things are done there? You are not entitled to see your records. In the States a patient or a rep has the right to have it, sometimes it's ackward maybe if we don't want the doc to think we are double guessing them etc…but by law they have to. I just read your next post, honestly I cannot believe it. How patronizing in this day and age that a DOCTOR could determine if you could handle the situation or not. In the States they might do it too, but it's frowned upon.
Robin so the new trial that you were just on, is that the one it did not work? How are you feeling now?
Bluebird you are dealing with so many issues, and you are so gracious – thank you. They really put you through the ringer.
Grannax cheers!! Yes, all of you beautiful ladies make me push myself too. Good for you, it seems perfectly reasonable for you to get back on track first. Shake this thing off real quick.
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has anyone used the Cure Match service? Just saw this today and was wondering if anyone had any feedback.
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Hartrish - [Edited to correct some errors. Thanks Babs!] Curematch takes genetic test results that you got from a lab and does their own report. I had foundation one and Caris testing and these labs provide reports that suggest treatment options based on the genetic mutations they found. So they take the same data you already have and re-do an analysis you've already gotten. For $1000 they believe that can give you more and better treatment options that the reports provided by the labs themselves. I'll keep it in mind if I have a spare $1K but it would not be the first place I would spend my out of pocket budget.
Many people here have done genetic testing and gotten reports that suggest treatment options. Sometimes. Sometimes they don't find any actionable mutations. At the moment, my test is not strongly influencing my treatment decisions, however, I am glad that I had the testing done. At a minimum the genetic test results will be useful down the road to track the progression of the cancer.
>Z<
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Z: curematch does not do the genetic testing. You upload your genetic testing reports from F1 or Caris and they run the data through what sounds like a super computer that analyzes the data against research, drug trial results, mutations, etc and determines best treatment options. I haven’t seen the site before today and thought it was interesting. Something like using Watson IBM to detail precision medicine.
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