How are people with liver mets doing?
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So sad for Kaylynne and her family. So sad for all the recent losses. I read her obit and agree- she was an awesome person
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Z, thanks for posting the info you received in your talk with Dr. Ulaner. So even if my biopsy were available, I might not be such a good candidate based on what he said . . . .
Kaylynne's obit speaks volumes about what a beautiful person she was, inside and out. So sad she is gone.
Lisa, good bloodwork, especially trending in the direction of improvement, is definitely a great sign. I hope that means that Doxil is working!
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This can't be correct! I just saw this posted on FB. Oh, the heartaches too much. I'm very sorry to share it and too shocked to come up with the right words.
Some of you may know Wendy Buers. Sadly, after a few months struggling with progression of liver and brain mets, she died peacefully this past weekend. I miss her terribly.
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I miss everyone who’s passed lately. It s just too much and too devastating!
I hate BC
Babs
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We have lost yet another sister. I don't post on this thread but Wendy3 did. I heard on a Facebook group that we both belonged to " Some of you may know Wendy. Sadly, after a few months struggling with progression of liver and brain mets, she died peacefully this past weekend. She was a wonderful human being."
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Oy Oy Oy does that hurt!!!! She was so full hope, that's just insane. It's too much. Such a good person, for a while she was the boss, and then this damn horrendous monster did not let go. Our sweet Wendy. Go with the angels.
Jens thanks so much for sharing, it's horrible horrible painful, but she was part of everyone here, we needed to know.
Which FB page was it?
How are you managing? Taking some time off in the summer?0 -
Jens, I'm sorry, I did not see your post in regards to Wendy. Yes, may she fly with the angels.
Mom, the FB group is Fighting Breast Cancer with Cannabis.
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I. Just got my liver panel back. My alkaline phosphate is high and so is my Ast. What does this mean? I had my second doxil yeste
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Hello all. I don't post often but follow this thread closely as I learn so much and value everyone's knowledge of this dreadful disease. Hoping it's ok to butt in - need your wisdom.
Metastatic (liver and bones) diagnosis February this year and started Ibrance/faslodex. PET scan yesterday showed “widespread MBC with mixed treatment response". Some Improvement in bone and liver lessons and some progression in others. New adrenal Mets- doctor isn't completely convinced of. He was surprised by the results especially a liver lesion that grew a lot. He recommends starting Halaven which i thought is a chemo used further down the treatment line. I've had Paxil and Xeloda before so he didn't want to try those again. I have the PIK3CA mutation. Also changed from ER/PR + HER2- to ER+ onlyfrom biopsy in February. I'm thinking another liver biopsy might be helpful...wondering what you all think.
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Wendy. I felt very close to her. I am devastated.
Z
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Lisa - I am not on doxil. I am on Abraxane. But my liver markers remained high through my first cycle even though other signs indicate I am responding well. These are markers of liver damage. My theory is that the drugs themselves can be hard on liver.
I have to say the high liver markers really got to my head... hang in there.
Z
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Ann- I would probably ask to biopsy the one large tumor in the liver which continues to growing possible. I would also ask if a local treatment fir just that tumor is pissible( ablation or resection). It might be a one off or at least might represent the cancer which is progressing on the current medicines.
I am not hormone positive and never have been so I can’t hrmo you there.
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What? Our hippie diet Vancouver friend? Wendy3?
Sad day.
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I posted this message earlier and it did not show up. Sorry if it repeats.
Has anyone taken alpha lipoic acid (ALA) with either cisplatin or carboplatin? If so, how did you take ALA in relationship to your cis/carbo infusion? I am thinking of taking ALA 600mg for ototoxcity (ringing in ears) from carbo. I read ALA can interfere with platinum drugs because ALA binds with metals. One clinical trial stopped ALA 2 days before and 4 days after cisplatin infusion. ONC cecreased carbo dose last cycle. Seeing ENT doc about hearing today.
Carbo and Gemzar has worked miracles on my diffuse liver mets (very little cancer showing on MRI now) and I don’t want to stop carbo.
Thanks for your input.
Tricia
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Lisa: my AST, ALT and alk phos were normal at beginning of treatment and became elevated during treatment. Now they are back to normal. I think mine were related to chemo. My alk phos still bounces from normal to about 10-20 points above normal in between my cycles. I really look at total bilirubin and albumin to assess my liver function.
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Thanks. My bilirubin is fine, bur my albumin is always low. I had a liver biopsy a week ago Monday. I wonder if that could have caused a rise in my ALP? I am just so tired of bad news. I hope this doxil works. I don't even know if it is a good chemo.
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Friends-
I was just informed that Bluebird (Diane) passed away yesterday. So sorry to be the bearer of more sad news....
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masonmawmaw, That is sad news. Thank you for letting us know. I was worried about Bluebird because I hadn't seen her on the boards. Condolences to her friends and family. May they find peace and comfort in sweet memories of Bluebird.
Too many losses, so much sadness. Hard to comprehend.
Hugs and prayers from, Lynne
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Sandibeach and all, I don’t think it is Wend3....under her posts on her aviator page it has her active yesterday
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My heart goes out to Bluebird and her family. This is a really tough time. Hugs to everyone. I wasn't going to bore people with too many details, but I got more good news today. Seems like we could use some, so here it is...
My liver is probably half the size it was before starting chemo in April. It is reduced in size noticeably even from last week. I only have one full cycle of abraxane plus 1 IV in a second cycle under my belt. I also took a 2 weeks rather than 1 week off between the first and second cycle due to the brain lesion drama, so my dose is already low.
We went ahead with the second IV of the second cycle this week despite marginal neutrophils. I am very unlikely to have enough neutrophils to get the 3rd IV in the cycle next week, but my onc and I agree that given my response the 3rd IV is not necessary. We can switch the priority towards reducing side effects and letting the liver heal. The liver was 60% cancer pre-chemo after all. I can't figure out how the liver regenerates when bombarded with cytotoxic drugs. I'll be moving to 2 weeks on, 1 week off or 1 week on, 1 week off goign forward. This will make the fasting regime much more reasonable and probably work even better. And give my liver some time to grow back.
Hartrish - I don't know much about cisplatin or how ALA might bind with metals in Cisplatin, but like most chemos one of its mode of actions is oxidative stress. For this reason, you may not want supplements like ALA that are strong anti-oxidants in your system when chemos are also present in your system at high concentrations and most active. Taking anti-oxidants on off weeks and between infusions makes sense to me. I take no supplements for two days before and two days after chemo just to be sure. There are good arguments for cycling supplementation anyway. The counter argument is that there is a longer term residual level of the chemo drugs in the system that plays an important role and anti-oxidants might interfere.
I have not been taking ALA with Abraxane so far just to keep things simple and understand the regime. But now that I am completing my second cycle, I plan to take ALA during my next week off. My concern is giving my normal cells time to recover from the assault of the chemo and reducing oxidative stress and I would take ALA for that reason and to help with liver regeneration.
There are likely good arguments on both sides, but I think the clinical trial offers you a sensible model. I am a firm believer in going with your gut. Go with the regime that feels right. I am happy to know there are doing these clinical trials. Good job on the research.
Lisajo - Doxil is a great chemo. I am not sorry to be on Abraxane given my response, but my first choice was Doxil because Doxil's synergy with the immune system is better understood and researched and I am all about the immune system.
I am very familiar with the fears that haunt having only recently obsessed over my rising liver markers during the first cycle of Abraxane. The truth is that we can't really say what they mean because it can be the chemo damaging the liver, while knocking out mets, or the cancer itself damaging the liver. We live with a lot of unknowns.
>Z<
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Z-So happy to hear your good news!!! Thank you for acknowledging my posts and sharing your wealth of knowledge. I wish you continued good news.
Lisa
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Z-fantastic news!! I'm sure your fasting is giving a very strong dose to the liver, and because you have the discipline to do it, you are clearing the drug faster and able to heal longer between cycles. Hopefully this works for a long time!!
Very sad for Bluebird-DE. Time for a cure.
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I wonder if anyone is familiar with Reolysin, oncolytic virus designed to bind to make cancer cells more sensitive to immunotherapy? There have been some trials combining it with paclitaxel chemo, or with immunotherapy. Anyway, they were just approved to do a phase 3 trial, but they don't say much about what it will be structured like:
https://www.oncolyticsbiotech.com/press-releases/d...
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Great news Z! We really needed to hear such a positive response to treatment. You ROCK! We are all reeling from all the recent losses.
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Z-awesome news. I am happy for you! Thanks for sharing such great news. You are an inspiration and hope
So many losses recently. It's ok to be sad...
Therese
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Cure-ious - I am watching Reolysin. One of my early doctors was a big fan. It's not my favorite oncolytic virus but at least they are looking at breast cancer.
At some point I will write up my notes in detail but this is my favorite ...
Special Combination of OBP-301 and Pembrolizumab
Of course the only trial location for breast cancer is in Japan. I swear that is an accident. Well the truth is they have an excellent cancer research environment. This link summarizes the results. In one trial of esophogeal cancer, 5 out of 7 patients responded to a single dose. Here is a link to some results.
http://www.oncolys.com/en/pipeline/telomelysin.htm...
>Z<
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OK, Z, thanks, I will have fun looking that up! The ASCO is like Christmas, biggest data drop of the year, and hasn't even started yet..
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I see that people know that Wendy passed. I'm devastated. She and I became FB friends and I had no idea that she was in this bad condition. We always chatted and I was just going to write to her since I didn't hear from her in a few weeks. I just can't believe this happened so fast. I will miss her terribly. She was so fun and never mentioned that she had brain mets. I thought her liver had issues but this is just awful. RIP Wendy. I will miss you!
Thank you all for the info on Afinitor. I am off this for now, but will go back on it but just 5mg and see what that does. I need to get my counts up and right now I feel weak and I think this is the first time I have actually felt the effects of any medication I've been on.
Happy Memorial Day to everyone. Thanks to all of my sisters for being here for me. We all stick together and keep fighting.
Love Anita
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Bluebird what is it to say. It's actually unbelievable at this point. Bluebird was such a good friend. The support and advice she gave was so heartfelt. She was trying to fight the system, the sewer. Bluebird you will be missed. So sad today.
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Zar you are a sweetheart in sharing with everyone. So so happy for you. You worked so hard to get here. Good for you. Forward forward only.
Curi-ous thank you for being on the lookout for SOMETHING.
Miao i bought that phospha...now let's hope it works on me. Thank you.
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