How are people with liver mets doing?
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Artist from what I know Cipro and Levaquin are a nasty bunch, maybe strong atibiotics, but Levaquin cause my sister to go bunkers, and Cipro could cause what you are saying. One thing, maybe is to lower the dosage lie 250mg instead of 500 etc… And it could cause GI issues also.
Grannax thanks for the info, let's see what the guy says tomorrow.
Z interestingly i know of someone that had liver mets,and she itched terribly, until we put 2 and 2 together, she was using Atarax it helped somewhat but it makes ppl sleepy. I do think it has a correlation.
Bluebird the liver biopsy results did not take more than 10 days. Not to worry, Onco at that time did not inform us, i kept calling and asking, and got somehow pathology, cytology to send it to PCP, so we knew b4 they bothered to tell us.Oh and waiting on the answers re: hot pack.
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Bluebird, I use a heating pad on my liver (front, side and/or back) nearly every night. It helps with pain/aches. Hyperthermia is supposed to kill cancer. It is not thought that a heating pad is strong enough to have an impact on a deep organ like the liver but it can't hurt. On my first Abraxane, I even put a heating pad over my liver during the entire treatment. My liver was really sore for a week and I suspect it turbo boosted the circulation of chemo into my liver.
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Thanks Bluebird, I'll give those a shot!
Mom. I just know that Cipro was a nasty toxic med. I barely made it to the last pill. I truly believe that is what exacerbated my problem with muscle weakness.
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Hi everyone,
I just posted in the brain mets thread but wanted to let you know that surgery went well on Monday, and I am recovering in hospital, looking forward to checking out trials. Thanks for the info about your consult at DF, Rhonda.
I will keep reading this thread, I have a feeling that my liver mets are going to be acting up. I have a liver MRI coming up. This is a lot to process, isn't it? Does anyone here have experience with trials at NIH? There is one with TDM1 for patients post-brain surgery. There is so much going on right now, thanks for all the info about mushrooms, too.
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Grannax - in my case when my liver mets are growing and/or under assault as they are with chemo and immunotherapy at the moment, I'll get rashes anywhere on my body where I put lotion, soap or sunscreen. My face blew up like a football from sunscreen 6 months before I was diagnosed even though previously I used sunscreen without a problem. Here the rash has developed where I sweat against clothes laundered in Japan. My theory is detergent. I washed everything with no soap the the rash subsided.
A couple of experts have confirmed that a stressed liver will present in skin symptoms generally and that skin sensitivity will develop. Not an expert in why, but it is an interesting possible source of skin issues that I had never considered.
>Z<
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Thanks Z. Kinda scary to think about. My next PET will be mid November, I think. As you know, in the August PET there was no up take in any of my liver mets. I'm trying to be hopeful that there won't be any new liver mets. But, I know it can happen. If growth is happening, there could be a correlation between that and "my face blowing up like a football".
I know it's not the same thing, but my husband's first symptom of pancreatic cancer was a itchy red rash all over his body. I understand how/ why that happened. The bile duct was blocked by the Cancer.
I'm going to pay more attention to my skin from now on. Hope you're doing well and coming to an end of your travels.
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LisaY, i am so glad you came through your surgery OK! Phew huh? Now I hope you find that the liver mets are quiet and you find a good trial to get you back on track!
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Every day I think, we think can't get much worse, and then it does.
The Intervention Radiologist seemed smart (he does not look it, don't judge by the cover..) and caring. He was extremely concerned, he said and showed it to me on the screen, D did not want to be in the room, he showed how the tumors took 50% of the liver, pretty much the whole right lobe, the left is not so bad comparingly. First to the bottom line, he called the Hospital and cancelled some of the ppl he had on schedule for Monday, and told the assistant THIS is urgent and get her in. He said there is still a very small window, if it gets worse no one is gonna wanna do it.
The procedure: Let's say, Monday, it would be something like an angiogram, to make sure that no physical aberration would interrupt the process, and that there is no pathway to the lungs ( so this radiation does not get into the lungs)etc... if she is approved, then they would order this treatment from Syrtex in Australia, it is specially dosaged (my word) to the person, and it is time sensitive, in other words, it should be arriving about a week after the order, and they will call exactly what time she has to be there, then they insert this high radiation thingy, he explained but i can't relate back, and she is "suppose" to go home the same day. BUT she cannot be near the children for at least 3 days.
So of course she is very upset about that, her life is really being turned upside down. My SIL said he will tell the kids they are going away for 3 days and I'd move in, yes, but they are middle of the school year, they won't like it, they will smell a rat.
I asked IR do we have an option? He said no. Life would be much shorter. This monster needs to be stopped. The liver metabolized the chemo, and if she will need chemo of some kind, if it won't do the job there is no need for the chemo.
Going back to the AM, long long visit with new RO, she could not believe the amount of mets. Damaging ones at that. The orbital area, is in danger of causing visual loss it's that bad, nerves on the lateral is causing numbness, her shoulders, other lesions that are pushing into the skin on the chest, and much to her concern the thoracic she is very scared what she will find when she sees the MRI specific to the spinal area that she is ordering, she is afraid she will see dangerous compression. NOW, this girl was being cared for by top docs in top Hospital. I have an email i just reviewed from June, RO telling me she reviewed THE REPORTS, and it's stable. No it was not stable, and she did not bother looking at the images herself, i think, because this is a train wreck it did not happen overnight. I can't even, because i'll explode. How could they? New RO says you can't just treat little pieces always, you gotta look at the big picture. Conservative is not always good. And then I ask you, they know the situation, just do it damn it, what are they protecting her for 20yrs down the road, she told them this hurts this hurts, and they kept saying systemic systemic, of course you can't do every bone, BUT her pictures are horrible.
So new RO says oh this urgent, so i called her in the PM, and i told her you told us this is urgent, but IR is saying the liver is urgent. So she said liver is MORE urgent. She'd give her a break of one day after the Y90 and then she'd start her on extensive daily Rads for up to 3 weeks. Mind you, IR told me that after Y90 there will be great fatigue. I asked him what kind of fatigue, he showed me like the sleeping kind! So hmmm how are we gonna drag her to Rads....I don't know.
Grannax does any of this ring a bell for you? Did you go through the same steps? Was it very tiring after. I wish we could all hear from more ppl that went through it.
I asked how many he has done? He said about 150 p/year. The truth is from what he says, we don't have the luxury of waiting for appointments to get other ppl and delay this. And the other Rads are being held back because of this.
She is taking the Neratinib it's causing abdominal pain, i hope she could tolerate it.
Yes, my friends, honestly it's unthinkable.
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Mom I am so sorry for what Dani is going through. It sounds like her new treatment team has some good plans though challenging treatments. I’ll be keeping you both in my healing thoughts and hoping for much better news after the y90.0
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Mom, what a scary time and the decisions we have to make are never easy or clear cut. I wanted to offer you some of what I know about Y90 from my consultation about a year ago with an RO and my MOs comments to me when I mentioned trying it recently after carbo failed. I've been meaning to post this for a while as many have been looking into Y90 of late.
First, I believe I understand where doctors are coming from when they keep emphasizing systemic, especially for those of us with cancer of the rapidly aggressive variety. In the year since my consult, my MO had multiple patients try Y90 and it did not turn out well for them. She seemed very upset by this and thus, while saying she doesn't mean to practice anecdotal medicine, she just couldn't recommend it for me. In short, in the time they wait for liver inflammation to subside so they can begin systemic treatment again, mets popped up in other locations and they lost control of the disease.
Those with slower growing cancers or who have other systemic options available to them besides chemo and can stay on this while Y90 is done, I think have no reason not to try it. For others, I do have some reservations. I haven't completely ruled it out for myself but would like to put it further down the line, if I am blessed with more years, so there perhaps will be more data on what this procedure is doing for breast cancer patients and when it's best to try and when not.
The rads immediately after Y90 sounds tough and it surely will be but I think if Y90 is done, you simply cannot ignore other mets in the meantime, especially the brain.
Finally, I received different information from my RO consult regarding being around kids and other people. They said there is not reason to be as conservative about this as was once thought. No one should be right up against my liver for hours at a time (no sitting on lap all day or cuddle sleeping all night) but otherwise no restrictions. I was even allowed to teach my 6 and 7 year olds. He also said most do not experience excessive fatigue. Not sure what you do with that but there's a second opinion of sorts from my RO.
Prayers to you as you wade these horrible waters.
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Liwi thanks for your love!
Kaayborg thanks a million, one problem IS time, of course today is Friday, all the crisis she had is either at night, on Holidays, weekends it's just seems that the stars don't line up...
Thank you thank you for the input. It's really scary. Re: tx, he is well aware that she has to be on, and i did not get the impression that she'd have to wait with inflamation etc... he did not even mention this, but i'm scheduled to spk with new Onco in the pm so I'll def know to ask this.
He said for BC it had good outcome. I know when you mention Y90 even between docs you could almost feel the skepticism. For s sure from MO. Where where can I find a quick answer. He told me she does not have option. I did send a message to a quasi hmm acquaintance that is a Radiologist doing Rads, he said this guy is right.
Regular rads they did not put limitations for her, but in this one, yeah, it's gonna b a lot of fun telling the girls not to hug mom. I think it's gonna be tough the Rads right after, but this RO was really concerned, about e/t. She could not believe. And there is a lot that is disturbing her QOL. It's unreal that I went along with these miserable ppl, and I trusted them.
We'll see what I can dig out more re: Y90 today.
Thanks!
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Mom - the interesting thing to understand about rads is that they are a systemic treatment when done to provoke an immune response. If you move forward with rads, ask about how whether and how this might be accomplished for Dani. It is also the time for immunotherapy even something as simple as PDL-1 inhibitor. Rads followed by immunotherapies are a powerful combination. Lay that path out for your team and see what they do with it.
I do like the IR, so go with it as time is short sounds like a good plan.
Hang in there. Thinking of you.
>Z<
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Z i do like that you seem comfortable with the Y90. I'm scared stiff. The way he explained it really seems otherworldly.
Re; Rads, do you mean the regular Rads? Or you meant the Y90. I did try to push Immunotherapy, they have it approved, Keytruda, but they want to wait to see about the Neratinib, and from what I understood, they are not mixing both, i'll b speaking to Onco in the pm, how can I push it??
How are you today Zar?
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Mom. I'm so glad that you've found a good IR. I believe he has a good plan for Dan I. That seems to be her most urgent problem right now. The fatigue was bad for a few days but i was also taking Ibrance at the same time. It seems like all IR have different criteria for being around children. What are their ages? Babies and pregnant mothers are the most vulnerable. The first day, maybe as little as 3 hours, is important. But after that im sure they can see her, just not sleep w her. Run that plan by him, maybe he'll compromise.
Yes when my IR told me they had to fly the y90 spheres to the hospital the day of my procedure, it felt like I was getting a transplant or something. All I can tell you, is mine worked. I know its true that it might not work forever. There could be other little monsters growing as we speak. But, in Dani's place, it seems all her docs are on the same page. This is the most urgent right now, then they will go on to the next most urgent. Thankfully the recovery for y90 is pretty short.
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Mom, I hope that Grannax's words give you some comfort in knowing that the Y90 procedure can be successful. I have been following her posts about the procedure, and find encouragement from her personal experience. We are all here to support you and Dani. ((Hugs)))
Grannax, I have never thanked you for sharing your experience with us. As you know, MBC can be scary every step of the way. There is so much misinformation out there that it is difficult for us to know what to believe and what to dismiss. Knowledge shared, especially from firsthand experience, is invaluable. This is overdue, but THANK YOU!
Hugs and prayers, Lynne
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Mom- I did the Y90 procedure in Dec 2015 for 2 liver mets in my right lobe. It was successful for me and I have been stable since then. I had a hard time with the recovery and had a lot of nausea and was very tired. It took me a good 6 weeks to fully recover. Grannax seemed to have a much quicker recovery than me so it varies by person. I continued with the perjeta and herceptin and started on faslodex the month after. My MO suggested the Y90 because the taxotere had not shrunk the mets at all. For me it worked and for that I am grateful. I will be happy to answer any questions you have.
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50's girl. Thank you. Your post means a great deal to me. I certainly believe that sharing personal experiences in our world of MBC is invaluable. Others sharing has helped me through this jungle.
Baby Ruth. You are so right each experience is different for each person. But we both got through it. Yay. Also, I tend to not remember as much detail, now that I'm five months out have good results. I probably should go back and read my posts the y90 thread. Ha I think parts of my day by day recovery were overwhelming , not mention disgusting!😫
I think Dani is between a rock and a hard place. I'm not a doctor but it seems to me there's really not a better choice for this moment in time.
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BabyRuth gr8 info. Let's hope this thing kill these bad stuff, def better when it's done when the whole side of the liver is not full of tumors. He told me it won't but at least he'll get it to a somewhat manageable place. Do you remember the restrictions about being w ppl or children? BabyRuth if you could think of something I should know or ask. I'm all ears.
Grannax thanks sweetie, IR said 3 days, and sleepg 3ft away from hubby. (some ppl don't even have 3 ft to be away in a bed, happens to be she does), definitely gonna ask again the details, but better safe with these kids, her girls are just about 11 and 9. But they love to hang onto her, so there will be work to be done. So I got some other docs to opine also, my son's friend is an Onco not specializing in Breast C, but he has been following things lately and he answered back this morning that there is no choice, he has seen it done for specific reasons and it could be very helpful. You are so right about feeling that it does look like a transplant situation. Listen, you guys are important ppl!!
She won't have a choice to recuperate b4 digging in for the other Rads, her Orbitals must be dealt asap and her thoracic, this RO is just stepping back due to the liver thing. But at least they are working together.
Lynne thank you for all the good wishes. How are your DH and yourself coming a long? You guys went through a lot. And yes, the ladies in these threads are just amazing, it helped me help Dani tremendously.
I was trying to find more info on Y90 in this community, but I did not get too much info.
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mom. Today is my granddaughter's eleventh birthday! So, I can relate to how much hugging goes on. If I'm in the same room, she's hugging me. I'll be praying for those precious little girls during this scary time for them. Yes, best to follow Dr. Orders for their safety.
After the procedure, you will be given specific instructions on when to call the IR. All the "what ifs" are on there. My IR called me back within a few minutes each time i called with a symptom. ( I had several). He even used his cell, so i could have called him back on that line. I think they take all recovery symptoms seriously, but none of mine ended up being serious enough to be sent to ER.
Praying, Vicki
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Some recent research on maitake:
Int J Mol Med. 2017 Oct;40(4):1089-1095. doi: 10.3892/ijmm.2017.3081. Epub 2017 Jul 26.
Grifola frondosa polysaccharides induce breast cancer cell apoptosis via the mitochondrial-dependent apoptotic pathway.
Zhang Y1, Sun D2, Meng Q3, Guo W1, Chen Q1, Zhang Y1.
Author information
Abstract
Grifola frondosa, a type of food and medical fungus, has been shown to exhibit various pharmacological activities, including anticancer effects. As the most typical cancer diagnosed among female patients, breast cancer remains a huge concern threatening human health globally. In the present study, the anti-breast cancer effects of Grifola frondosa polysaccharides (GFPs) and the underlying mechanisms were investigated in MCF-7 and MDA-MB-231 cells, as well as in nude mice bearing MCF-7 tumor xenografts. GFPs exerted cytotoxic effects on the cells, as indicated by a decrease in cell viability, and an increase in the apoptototic rate, lactate dehydrogenase release and reactive oxygen species accumulation, inducing mitochondrial dysfunction. The increased expression of Bax, cleaved caspase-3 and caspase-8, and the reduced levels of B-cell lymphoma 2 (Bcl-2) and Bcl-extra large (Bcl‑xL) were observed in the cells incubated with GFPs and in the tumor tissues of the mice treated with GFPs. Moreover, the GFPs significantly suppressed the phosphorylation of AKT/glycogen synthase kinase-3β and extracellular signal-regulated kinases in a time-dependent manner. Finally, the inhibition of MCF-7 tumor xenograft growth further confirmed the anti-breast cancer effects of GFPs. All these findings revealed that GFPs induced human breast cancer cell apoptosis via the mitochondrial-dependent apoptotic pathway, and provide experimental evidence to support the use of Grifola frondosa as a potential treatment for breast cancer.
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Mom - It is a good question what I mean by Rads. I mean something like Stereotactic Body Radiation Treatment (SBRT). SBRT is a type of radiation that is tuned to provoke an immune response. There may be others.
The RO may feel that she's going to get an adequate immune response with the approach she is taking. You do want them thinking about it and talking about it and explaining to you whether their radiation is going to release neo-antigens. I recalled that some kind of PDL-1 inhibitor is lined up so this radiation treatment is a huge opportunity. They may be thinking this already.
I don't know if the Y90 provokes the immune response in the same way. It doesn't matter as long as she is getting radiation somewhere that floods her system with cancer neoantigens and gives her newly activated immune system something to attack.
Grannax - I've been thinking about your rashes and my rashes . I kinda think my current rashes are a response to the cancer being attacked. These rashes occurred only AFTER the liver mets got hit with chemo and hyperthermia. My skin sensitivity is most likely the liver dealing with the carnage of a dying tumor. I would not be surprised if that is the case for you as the Y90 effect takes a while to play out.
It's a lot like TM's ... more of an indicator that something is going on than exactly what is going on. We interpret them from context and experience. I am expecting you will find that your liver just got upset when it had to deal with the mess after a Y90 treatment ... and took it out on your face. Your liver is likely hard at work tidying things up. We'll know with time.
On a related topic my CEA is developing into a useful took to monitor my cancer. CA 15-3 and 27.29 have been useless for me. Depends what antigens your cancer sheds. Oddly, CEA is rarely reliable with MBC, but here are my last CEA numbers in context. After doubling monthly for several months, my CEA dropped slightly after 2 weeks of low dose chemo combined with hyperthermia.
The purpose of the initial treatment is to down-regulate immunosuppression and not treat the cancer directly. The chemo doses I was taking are not considered an effective dose for treating cancer. The hyperthermia doses I am getting are sufficient to kill cancer directly. Difficult to parse what is causing what, but it is sure nice to see my CEA did not double again.
>Z<
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Before treatment yesterday my daughter and I did a ninja training at the dojo of a clan than goes back 100's of years. As a side effect of chemo I've lost weight and acquired the aspect of a Japanese demon, both of which are totally awesome events. Made my appointment with 10 minutes to spare on Friday. I've got no time for this cr@#P, and less and less patience every day.
On Monday, I will be lucky if I have to wade to my appointment through a class I hurricane (or typhoons as they are called here). Typhoon Lin made landfall in southern Japan as a Class 3 storm. The current thinking is that it will chill a bit by Monday. I asked whether the clinic would close if it remains class 3 or increases to class 4 (both of which are possible) and they said no, just jump on the metro and show up at your appointment time. They don't even blink for typhoons here they are so frequent.
>Z<
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Momall - no words of wisdom from me but you certainly are getting info from a lot of smart ladies and gent on this thread. You and Dani are always in my thoughts.
Visit with MO yesterday and TMs are still on the rise. MO is adding two chemos to my current Epirubicin. (CEF = cyclophosphamide, Epirubicin, Fluorouracil) Anybody had this trio as stage IV?
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Z, I'm also thankful your car didn't double again. If I could only stop mine from doubling. It's amazing how they think nothing of the typhoons. You and your daughter please be careful. We are all here supporting and praying for a positive outcome for you.
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Z. I think I get it. Even at 5 months out, my liver might still be "cleaning up"" Basically, for some, if the liver gets mad it can cause a skin rash or other symptoms that don't seem related. I hope you're right. I'm due for a PET in November.
Your pics from Japan are amazing. How much longer will you be there? Praying for your treatment to work and for you to feel better. Vicki
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Z- love the mask
Kandy- did you ever ask your MO about Ibrance or Abemaciclib
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morning everyone I have a quick question when your livers started to progress did any of you experience burping and flu like symptoms. I'm one month out from chemo and I fear it's starting up again😩. Been feeling weak and dizzy and burping like crazy. I was hoping for a bit more time before having to get on the chemo band wagon gain. At least some eyelashes first..
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Wow Z you and your daughter stay safe. The building must be built very well there to survive through these storms over and over. Great that you are still able to get out and do stuff love the picture very cool. How are you feeling about the treatment so far? I need to catch up on my reading.
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Wendy I have had progression in my liver but not with those symptoms, actually no symptoms at all. Hoping it's nothing and you pick up and feel better real soon.
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Wendy - do you still have your gallbladder? Burping is one of the first signs of gallbladder troubles. Just a thought.
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