How are people with liver mets doing?
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Z, I'm praying for you....it does get so old, doesn't it? It always seems to be something....sigh. Stay strong!
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Z: hope you are feeling better and these treatments work on your liver Mets. Praying for complete healing of your cancer. Hang in there
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Thanks. Finished my final treatment. Possible world record for hyperthermia dose to liver. Chills, liver pain, fatigue at the moment but it was my last treatment. Should improve over the weekend. FWIW, this was not my experience with treatment last time. I am not sure the cause. I may never be. Lots of unknowns. I like my doctor here partly because he says "I don't know" a lot. It is what it is.
>Z<
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Z,
I hope you can get plenty of healing rest today. Praying for quick and clear results.
Blessings!
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Z, praying for you to have strength as you make the long trip home, and for every wave of fatigue to be because the blasted buggers are DYING. Take the wheelchair this time, my friend! No shame. Tired warriors deserve a chariot ride home from battle, babe.
We'll all be glad to hear you are home and resting up. Thanks for keeping us apprised from afar.
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Thanks. Arriving here, the immigration line for foreigners was 1+ hour of standing in a line that appeared to go on forever. I called for a wheelchair. I was whisked through the priority line in 5 minutes by my 11 year old on a chair. DD had put "medical treatment" on the immigration form as the reason for the visit and that made everyone very helpful... just a tip. So I am getting used to the idea that I am as disabled as the next guy in a wheelchair. I can't believe it.
The issue returning to the US will be security so if that line is bad, it's time for a wheelchair. I will have to manage perception as I like to do yoga while waiting at the gate for my 9 hour flight.
Feeling better. I still have 10 hours to improve before we begin the haul to the airport. The main thing now is a stomach ache ... cramping in my abdomen. It feels like I did a lot of sit ups. I haven't pooped in 48 hours which is strange since I have had diarrhea for 8 weeks. I am going to give the German way a shot this morning ... go to a cafe, order an espresso in a cup not a takeout container, sit down and drink it slowly.
I crave grapefruit ever since JFL remarked that it is draino for the liver. I took Tylenol for the pain yesterday and washed it down with the remainders of my second quart of grapefruit juice in 2 days. Then I realized that 1) Tylenol causes liver toxicity and failure in high doses and 2) grapefruit juice delivers furanocoumarins which block CYP3A4 metabolism and 3) CYP3A4 metabolizes Tylenol. Taking Tylenol with grapefruit guice probably does increase the dose of acetaminophen but here its the metabolite rather than the drug is toxic. Furanocoumarins interfere with CYP3A4 and SLOW DOWN the metabolism into the toxic form, NAPQI. Grapefruit effects levels of NAPQI but probably mostly by delaying and flattening the peak toxicity in the liver rather than increasing the peak. Not 100% sure I got this right as pharmokinetics is a complicated topic, but acetaminophen is not on any list of drugs that should not be taken with grapefruit even though it is well known to cause severe liver toxicity in high doses.
Those with with impaired livers should be aware that ...
NAPQI (N-acetyl-p-benzoquinone imine) is a toxic byproduct produced during the xenobiotic metabolism of the analgesic acetaminophen.[1] It is normally produced only in small amounts, and then almost immediately detoxified in the liver. However, under some conditions in which NAPQI is not effectively detoxified (usually in case of overdose), it causes severe damage to the liver. This becomes apparent 3–4 days after ingestion and may result in death from fulminant liver failure several days after the overdose.
Those with impaired livers should probably take care with Tylenol. My challenge right now is that advil reduces inflammation and inflammation is what I am looking for ... basically that's an immune response. Hoping to just lay off the pain killers today.
>Z<
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Thanks. Arriving here, the immigration line for foreigners was 1+ hour of standing in a line that appeared to go on forever. I called for a wheelchair. I was whisked through the priority line in 5 minutes by my 11 year old on a chair. DD had put "medical treatment" on the immigration form as the reason for the visit and that made everyone very helpful... just a tip. So I am getting used to the idea that I am as disabled as the next guy in a wheelchair. I can't believe it.
The issue returning to the US will be security so if that line is bad, it's time for a wheelchair. I will have to manage perception as I like to do yoga while waiting at the gate for my 9 hour flight.
Feeling better. I still have 10 hours to improve before we begin the haul to the airport. The main thing now is a stomach ache ... cramping in my abdomen. It feels like I did a lot of sit ups. I haven't pooped in 48 hours which is strange since I have had diarrhea for 8 weeks. I am going to give the German way a shot this morning ... go to a cafe, order an espresso in a cup not a takeout container, sit down and drink it slowly.
I crave grapefruit ever since JFL remarked that it is draino for the liver. I took Tylenol for the pain yesterday and washed it down with the remainders of my second quart of grapefruit juice in 2 days. Then I realized that 1) Tylenol causes liver toxicity and failure in high doses and 2) grapefruit juice delivers furanocoumarins which block CYP3A4 metabolism and 3) CYP3A4 metabolizes Tylenol. Taking Tylenol with grapefruit guice probably does increase the dose of acetaminophen but here its the metabolite rather than the drug is toxic. Furanocoumarins interfere with CYP3A4 and SLOW DOWN the metabolism into the toxic form, NAPQI. Grapefruit effects levels of NAPQI but probably mostly by delaying and flattening the peak toxicity in the liver rather than increasing the peak. Not 100% sure I got this right as pharmokinetics is a complicated topic, but acetaminophen is not on any list of drugs that should not be taken with grapefruit even though it is well known to cause severe liver toxicity in high doses.
Those with with impaired livers should be aware that ...
NAPQI (N-acetyl-p-benzoquinone imine) is a toxic byproduct produced during the xenobiotic metabolism of the analgesic acetaminophen.[1] It is normally produced only in small amounts, and then almost immediately detoxified in the liver. However, under some conditions in which NAPQI is not effectively detoxified (usually in case of overdose), it causes severe damage to the liver. This becomes apparent 3–4 days after ingestion and may result in death from fulminant liver failure several days after the overdose.
Those with impaired livers should probably take care with Tylenol. My challenge right now is that advil reduces inflammation and inflammation is what I am looking for ... basically that's an immune response. Hoping to just lay off the pain killers today.
>Z<
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Hi to all of you. I don't post often but read everything you write. I have learned so much from your posts and have gotten advice, support and hope from so many of you. I am constantly in awe of your kindness, generosity and concern for each other.
I am a long time breast cancer patient/survivor. I have written about my cancer journey before on this site, but for those who may not have seen it, this summarizes my story. I was first diagnosed and treated in 1975, then again in 2004 and then in 2013 with MBC in the bones. I was treated for 2 1/2 years with letrozole.
In January of 2017, i was diagnosed with liver lesions and went into the Monarch clinical trial, which was a 3 drug treatment. I wasn't able to tolerate the 3rd drug, LY3023414, but was kept on fulvestrant and a lower dose of abemaciclib, 100 mg, twice a day. As part of the trial I have regulat MRI and CT scans- for the first year every 2 months, now every 3. The last 2 scans showed significant reduction in the lesions, and the great news is that the last scans showed a 100% response to the liver lesions, meaning they are gone!!. At my dr's appt yesterday, there were hugs and kisses all around from my doctor and the clinical nurses!! The lesions are followed and evaluated by a radiologist who prepares a Recist Report ( a response assessmenmt form). My Onc also said that the 3 drug treatment has been approved.
I hope that this info will show that there is hope in the new treatments that have have been developed recently and may also prompt some of you to consider abemaciclib if you have been reluctant to. I have been able to tolerate the side effects without having to change my every day life to do so. (The reduction in dosage of abemaciclib may be one of the reasons) I work part time 2 days a week, and my DH and I just returned from a 14 day cruise. I have been dealing with this disease for 40+ years, and I amy still here!!!
My thoughts are always with of all of you as you stuggle to live your lives as best as you can. I am saddened by the difficulties and disappointments you experience. I am uplifted by your successes and spirits on this difficult journey. Love to all of you.
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Hi to all of you. I don't post often but read everything you write. I have learned so much from your posts and have gotten advice, support and hope from so many of you. I am constantly in awe of your kindness, generosity and concern for each other.
I am a long time breast cancer patient/survivor. I have written about my cancer journey before on this site, but for those who may not have seen it, this summarizes my story. I was first diagnosed and treated in 1975, then again in 2004 and then in 2013 with MBC in the bones. I was treated for 2 1/2 years with letrozole.
In January of 2017, i was diagnosed with liver lesions and went into the Monarch clinical trial, which was a 3 drug treatment. I wasn't able to tolerate the 3rd drug, LY3023414, but was kept on fulvestrant and a lower dose of abemaciclib, 100 mg, twice a day. As part of the trial I have regulat MRI and CT scans- for the first year every 2 months, now every 3. The last 2 scans showed significant reduction in the lesions, and the great news is that the last scans showed a 100% response to the liver lesions, meaning they are gone!!. At my dr's appt yesterday, there were hugs and kisses all around from my doctor and the clinical nurses!! The lesions are followed and evaluated by a radiologist who prepares a Recist Report ( a response assessmenmt form). My Onc also said that the 3 drug treatment has been approved.
I hope that this info will show that there is hope in the new treatments that have have been developed recently and may also prompt some of you to consider abemaciclib if you have been reluctant to. I have been able to tolerate the side effects without having to change my every day life to do so. (The reduction in dosage of abemaciclib may be one of the reasons) I work part time 2 days a week, and my DH and I just returned from a 14 day cruise. I have been dealing with this disease for 40+ years, and I amy still here!!!
My thoughts are always with of all of you as you stuggle to live your lives as best as you can. I am saddened by the difficulties and disappointments you experience. I am uplifted by your successes and spirits on this difficult journey. Love to all of you.
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MZR - this is great news! congratulations!
>Z<
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Zarkova, you certainly are dealing with a lot and still took a moment to respond to my post! Thank you.
Wishing you good results and ease very soon. And a beautiful, healing yoga practice at the gate!
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Z, in addition to all you wrote about grapefruit and Tylenol-- those of us with an MTHFR genetic mutation should never, ever, ever take Tylenol. Our bodies cannot metabolize it. I suspect the percentage of BC patients with MTHFR is higher than the percentage in the general population.
I read earlier this week that the list of meds that interact with grapefruit is actually quite a bit more extensive than what is commonly reported. For example, I have never been warned at the clinic to avoid grapefruit on Taxol. However, I have found Taxol on lists of contraindicated meds online.
As always, we have to do our own due diligence on just about everything!
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Hi mzr119. I see that you don't post often and grateful that you shared the good news about your liver mets! Wow.
Since I am still confused about scans, what scan showed disappearance of your liver mets..the MRI or CT or both?
My MO does not order PET scans.
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MRZ - I have copied your informative paragraph to take to my oncologist on 13th. I appreciate the input. Also knowing the 3-drug protocol is approved.
Z - I know all too well about accepting the wheelchair. I was bad about it. Worse about scooters in a store.
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Robin, I find that ridiculous that the numbers are so close to qualifying for a blood transfusion and they don't just do it as a preemptive measure for your comfort and well being. It has been very disheartening for me to see how bureaucracy, red tape and money can supersede compassion. I hope you get that transfusion ASAP!
Z, My gosh, our super girl is going through SO much! I am glad you got through it OK and are on your way home. I hope the treatment helps tremendously and they figure out the HER status issue. Time to recuperate in your glorious own home.
Thanks for the info Lulabee and Z on tylenol. I occasionally need SOMETHING so do pop a few. Guess Advil is better on the liver? I absolutely LOVE pink grapefruit and hate that you must be careful in eating it.....
mrz, keep on trucking girl. Very uplifting for us all!
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Z I broke down my last trip to Paris and took a wheelchair. What a difference. People looked at me weird cause I look good so I feel like I should wear a sign that says @cancer patient. Honestly I get so out of breath I could never not take a wheelchair at this point.
MRZ. So happy for your great results!!!!
I’m home and feeling pretty good from the Y 90 It was easier than the mapping. My IR just called and said the scans showed great uptake in the areas where my mets are so she’s very optimistic that I’ll have good results. Side 2 on 4/5!!!! It was great having you all with me routing me on today!!!
Wishing you all a great weekend
Bab
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To answer the question about which of my scans showed the most definitve results for the liver mets, it is the MRI. I have been told since I developed the liver mets that the MRI is the most accurate scan. The CT scan said "probably decreased in number" while the MRI said,"previously seen hepatic lesions are no longer visible." Also, I was told the radiologist follows both scans, but considers the MRI the standard test.
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Mrz, Thank you for your post. It is helpful in so many ways. We all try to stay well-informed about new treatments. You have given hope to people who read about your results. Now the most important part of my message - congratulations for your excellent response. WOOHOO!
Hugs and prayers from, Lynne
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Babs - I've been thinking of you all day and am thrilled with the feedback you've received! I hope you can relax and breathe easier this weekend.
I learned a lot from you in your prior posts regarding the gdc-0077 trial @ MSK. I'm now in phase two of that trial receiving the trial med and letrozole. I wanted you to know that what is shared on this and the Inspire site really is helpful to others.
Again, congratulations and relax!
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Mzr,
Wonderful news,
I also have a long term relationship with BC, 25 years with several local reoccurrences and the last one, 3 yrs ago, mets to pleural and now liver. Thanks for the info on the trial and abemaciclib, your response is great news. My MO has been talking about this drug and has a number of patients who are doing well and not experiencing the dreaded side effect, I may consider this if what I'm currently on is not effective.
Z ,
How will you be able to discern which treatment plan is working?
Kathy
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After my recent ambiguous PET results, I saw my MO today. He said that he reviewed my PET with the head radiologist and his sense is that I should stay with Abraxane, but proceed with caution, although he first asked for my input on whether I wanted to stay on it. I am going to stay with it for now, particularly since I may be getting a power punch of Y90 to my liver soon. He did say that we should start thinking about next treatment and he mentioned the NCI FGFR1 trial, which now has a study location a few hours from me. I asked about the trial's performance and he said that results have not been produced yet but that the trial was increasing participants by a sizable number and that the drug company wouldn't pay for that unless they thought it would lead to FDA approval. I also talked to my MO about potentially having another liver biopsy in order to do a Caris genomic panel. I am not sure when I will do it but in the meantime, I had a Guardant 360 liquid biopsy done today. I recall Shetland mentioning that she did a liquid biopsy a while back. Has anyone else had one and did it produce any actionable results?
Woody, I mentioned the CISH test for HER2 and your experience to my MO. He told me that if we do a Caris test, he can specifically order the CISH so that it would not be in Caris' discretion whether to include it.
Babs, glad to hear Y90 went well!! I hope the recovery is mild and it gives those liver mets a nice beatdown.
Z, you have been through a storm with all going on. You are a trooper. I hope the difference in your body's response this time in Japan means your immune system is revving up to do its job. I hope you can continue with Herceptin/Perjeta when you return. I am a firm believer it helps a wider set of patients and its use should be expanded. Did you have some sort of HER family mutation in your F1 report a while back (not HER2 but HER3 or 4 or something else)? I, too, crave grapefruit. My poor liver could use the help and I love the taste. Alas, all my mets treatment lines have involved at least one med for which grapefruit is contraindicated (Ibrance, Xeloda, Afinitor and Abraxane). For many, many years, I would eat a grapefruit a day for breakfast. I actually find myself looking at the grapefruit in the grocery store longingly . . .
Mzr, yours is an encouraging story about abemaciclib! Great news about your liver mets disappearing. What type of drug was the third drug you couldn't handle?
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JFL - You have a good plan. I am really interested in the FGFR trial because I have the FGFR mutation. Please report back what you learn about that trial. It's great that it is expanding.
I don't have any HER2 mutations or expression in either the F1 or Caris report done last fall.
>Z<
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It's tricky to discern. The activated NKC cells have a half life of 5 days but if they are really killing cancer rapidly, they die in 2 days. I had a blood draw yesterday and concentration of NKC cells is one thing they will look at, but the concentration may be low given the extent of my mets if the NKC cells have been busy doing their thing. One would like the NKC activity to trigger a longer term adaptive (T cell) response, but that is hard to measure. You can have a high concentration of T cells and they can be in an active state, but T-cells are very specific for certain antigens. If the active T-cells are not the ones that see the proteins on my cancer, it doesn't matter if they are active. It's also hard to determine which proteins my cancer presents. We have not tested that directly. There is no reliable direct test of the immune response.
Another test is to look for the presence of T-cells in the tumors. I will have to get a biopsy for that, maybe a month or two out. The presence of T-cells in the tumors would suggest that NKC (innate) immune system triggered a longer term adaptive (Tcell) response. A biopsy may happen just so I can prove my HER2 status.
The simplest thing is just looking at tumor markers. My CEA has accurately reflected the progress of my cancer these past few months, so we're looking for a drop in CEA. You can get a tumor marker flare when the cancer is dying, but the doctor doesn't expect it should last more than a 3 weeks. So with time, CEA should be a guide. I can also look at the HER2 protein levels in my blood. If they drop then the HER2 expressing cancer is likely dying.
Scans of course are important and we'll do an MRI and look for a reduction in the tumors, but you can get a flare in scans as well when tumors become enlarged with inflammation caused by the immune response.
We also have to consider that any response we see may be due to faslodex, not immunotherapy. I started faslodex about 6 weeks ago. We could begin to see a response from Faslodex in the next month. There are doctors on my team who will discount any possibility that the response is due to immunotherapy and credit Faslodex alone for any improvement.
So, it's something that you tease out over time from multiple diagnostic tools and you never really get a definitive answer.
Yay. What a mess this is.
>Z<
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Z- Congratulations on finishing Round 2 in Japan! You are learning so much each time, and have shown it is possible to mix this treatment in with your other standard of care drugs. It is like a big test supplementary procedure. I agree with your MO, our diets are not the reason we have MBC and will not save us. If metastasis needs asparagine, trying to leave it out of our diet is very unlikely to work, the cancer has tons of ways to scavenge what it needs from our body. And for breast cancers that run on estrogen, deprive them of estrogen of course, but trying to deprive them of sugar by not eating cookies or ice cream is doing nothing, sugar is not what they most need to drive growth and is so easy to get in the body.
MZR- Thanks for weighing in with your valuable perspective. The more of these stories, the merrier!
JFL- I'd second the support you are getting for the interesting FGFR1 trial- it was discussed in a recent OncLive video, and both oncs mentioned that they were excited that the phase 2 part of that trial was coming to their institutions. Is for only if you have the mutation, but the drugs have been shown to be strong in other contexts, and might offer a better way forward than the mTOR/PI3K drugs from Affinitor to second gen drugs, all of which seem to have their limitations. It is being expanded bigtime in phase 2, which is a sign that somebody is hoping its going to be big.
I wanted to write a quick update about the CD47 monoclonal antibodies in development some of you are following as a different kind of immunotherapy. Last fall there was a new report saying that MHC class I molecules also act like CD47, in that they are a way for cancer cells to hide from the immune system. I have not read the original report, but the press release said the combination of anti-CD47 and anti-MHC was even stronger than each alone in pre-clinical, but it also mentions that in cancers that have low MHC and may not be very sensitive to checkpoint inhibitors, they might instead be expected to be sensitive to CD47, so maybe that will be the case for our cancers?- Anyway, this technology seems to be going slowly in that trials are not underway for MBC, with immunotherapy we will always come last, but they nevertheless are something to keep on the radar.
Here is a link: https://med.stanford.edu/news/all-news/2017/11/sec...
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Scout a bout. How are you going in the trial. How long have you been part of it. I hope it works for you for a very long time
Babs
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Kaayborg, I'm very glad to hear you are feeling well on C&G chemo. I'm sorry you have to experience any comments about your "pregnant" look. I had some of that look from large uterine fibroids in the past and I hated it. Would future olaparib make sense if a liquid or tissue biopsy showed a somatic BRCA mutation i.e. just in the tumor?
Kaylynne, I'm another one who can report a fast response from Xeloda. I had a big liver ache for a couple days my first week on, then a steeply falling tumor marker.
Grannax, I can relate. Side effects can feel sad and unfair, like you are getting beat up when all you want to do is just live your life. You are glad the cancer is subdued, but what a way to live, right? It always makes me think about Pride and Prejudice when the Bennet family has to be happy Lydia is married to a scoundrel because being unwed after running off with him would be worse. But Yay for your grandchildren bringing you joy!
Princess Pincushion, aka Amethyst, what a great phlebotomist! I bet you will really enjoy your PA-CO cross-country family trip. Just think how many visitors from Japan would love to take that trip!
Lulubee, thanks for saying that Xeloda worked for your ILC for three years! That's a bit of hope for me. You need a Phoenix badge or something for your amazing comebacks from scary stuff.
JFL, my IR told me that Y90 is fine with diffuse mets. It is on my list of future treatments. (I was about to do it but Xeloda worked well and fast, so holding off.) Good for you, insisting on seeing the actual IR. For heaven's sake, we are talking about radiating your liver! Kind of a big deal.
Kisses for you, too, Woody!
More posts later; I am catching up.
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If anyone could post a link to the FGFR trial going into phase II I would be eternally grateful. My cancer is a flaming mess of FGFR mutations.
I like the CD47 inhibitor line of research. Its working in the innate immune system rather than the adaptive (T-cell) immune system. Getting T-cells to attack MBC will be hard, but the innate system has been proven to see breast cancer. Arguably we should be a prime target for these treatments and not an afterthought.
It turns out, there is a CD47 trial with many flavors that accepts MBC patients. And one arm includes T-VEC, an oncolytic virus. I'll need to spend time on this one ...
https://clinicaltrials.gov/ct2/show/NCT02890368?term=CD47&cond=Breast+Cancer&rank=1
>Z<
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Z FGFR How did you find out that your liver mets are FGFR? Was it from the BX you had a few months ago? What does it mean? I know you want info on the trial and I don't know anything about that but I hope someone will send you what you need.💞
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Hi. JFL - I had the Guardant test last August...it was done by my 2nd Opinion MO. He was apprehensive about doing it because you're not supposed to be on Chemo at the time of test, because the CTC's might not be present in the blood. I had just started Gemzar, so he wanted to give it a shot. Results came back that I would not respond to hormone therapies, which I had already failed 2, so we expected that. However, the test did say that I should respond to Faslodex. I switched to Faslodex when Gemzar stopped working (5 months), and Faslodex didn't work at all. After 2 cycles, we did a scan, and my liver went crazy, and my TM's doubled. This is why my MO doesn't like torun the Guardant type tests...it often gives ambiguous results. I started a heavy dose of Xeloda (5000mg a day) last week, hoping it knocks these suckers back! Scan in 5 weeks.
I'm not sure if I'm a candidate for Y90, but it's on my list to find a great IR to have the conversation. I ask my MO every time I see her, and her opinion is that it would do more damage than good. Time for me to hear for myself.
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Hi Z- the FGFR studies came up in a panel discussion on what to use after resistance to CDK4,6 inhibitors
it is towards the end of this clip: http://www.onclive.com/peer-exchange/systemic-ther...
I think the clinical trial they are talking about is this one: https://clinicaltrials.gov/ct2/show/NCT03238196
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