How are people with liver mets doing?
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JFL? how is your liver I guess the Xeloda doesn´t work forever. My big toe nalis are taking a beating lifting up and ready to fall off. Kinda got the redness and pain under feet under control. I it best not to wash feet just use wash cloth?
you are a long time survivor were you doing vigous exercise during treatment. My psyical therapist toldmenewresearch is showing that those who exercise 30-40a day. I sit on stationary bike with seat with back haveless fatigue and higher chance of survival longer. helps with heart damage from chemo.
Raven
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lulubee, I've wondered that same thing. I explained it to myself that if she hasn't shown MBC in all this time while not having any other treatment, then...???? I have read a couple of articles about her but not extensively so I could be wrong about her not having any further ongoing treatment.
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https://www.newscientist.com/article/2170679-woman...
I think this iswhat the 3 doctors that just won the noble prize in medicine this month were getting the prize for. she is one lucky gal to be picked for this trial.
Raven
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Judy Perkins has been NED for three years with no treatment. Her bloodwork and scans show some bone scarring, but no active cancer.
Do we know of anyone else who has gone this long, without treatment? Two other people from her trial are also NED for three years. One was a colorectal, and the other bile duct cancer, I think.
Granted, three out of however many is a higher score than any other trial I have heard of.
In this article, they call it a "complete durable regression". https://www.nature.com/articles/s41591-018-0040-8.epdf?referrer_access_token=MunF-6F1mH5EAhIQc93mVdRgN0jAjWel9jnR3ZoTv0PgVH-53-G0nNyIGBikj1Z_a-CL6MLuYMtVAPCa-WQ7WOUElCQooAQSinB3svIdZiE4XMwCm2BsRS40TJvDuN3wtAwsyaTRXp6MZWGYvk4-eiYd7I6xDBHRLNLHC3xRMUDf4g4X9TmwEFnGX4ujPi6gRWyxwEKooYxi7g0LhVEpZeSHpH_R5f_cPfFgWt8glKfkf88zovmZ3jBRHXf29Hm4KMbt9PMKUbfaYutLUZD7wHCLBS0RCplgVXP50NflKY3Bg5jQIm8ADICz-SK5j2p8RkwILjoTsZCzZfeYemtJDA==&tracking_referrer=www.npr.org
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Golly I'd take 3 years.
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Judy Perkins was treated by Dr. Steven Rosenberg at NIH. He was not the one to wonthe noble peace prize but is a leading doctor in immunotherapy for many years. There has been some backlash in the MBC community by the fact they call her cured. She was estimated to not survive longer than 3 months prior to going onto this trial. Her doctors at NIH were the first to call her cured even before her story broke. She’s has had no signs of cancer and all of her tumors completely resolved for 3 years now and has not needed any treatment. They have been doing this type of immunotherapy on Melanoma patients for many years and ones that’s had a complete response they called cured. They have just recently branched out to other cancers MBC being one. Judy so far is the only MBC success story.
I for one would love to be in her position whether they use NED or cured. I’m happy with her success on this trial.
You can look of the TIL trial on clinical trials.gov
Tumor Infilitrating Lymphocytes (TIL). There are also many articles/interviews about Judy’s story. I have talked to her personally and she has had no adverse effects from this but the trial itself is no walk in the park.
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I wonder if there are other TIL trials ramping up. I feel like academia is a competitive space, and this therapy seems so promising.
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Jennifer and Kat, thanks for that additional information. That helps answer my question.
This is intriguing and it would be extremely encouraging IF it meant there will be fast access to that treatment for the REST of us. If not, it's just depressing as heck to know we could be getting help but it's not being made available to us. We'll see, I suppose. Seems like everything moves too slowly, except for the cancer.
I'd be thrilled to get even three months off treatment.
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Lulubee,
I’m with you. I would love to have my life back without cancer and no treatment. The TIL trial still has a long way to go for MBC but i still remain hopeful. Even if they accept you into the trial and you are able to have a tumor removed, your cells as they grow them in the lab have to show reactivity. 2 women recently with MBC were accepted into the trial and had the surgery but after 4 months of waiting for their cells to grow, they received the unfortunate call that there was no reactivity so they could not move forward from that point. It is amazing that they can use your own cells to help kill cancer cells. I’m just praying for more success stories like Judy’s. I think Judy and 2 other ladies were the first MBC to enter this trial. One died while receiving her T-Cells. She developed a staph infection that she just couldn’t recover from. The other which was a friend of Judy’s did not get a response after getting her Tcells infused and she later died from the disease some months later. But I think the more who enter the trial the more they learn on how to tweak the treatment. This is a very individualized treatment.
I just remain hopeful.
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Hi Everyone
Started with some faint tingling in my hands. I have tried to search threads for what people are doing to treatneuropathy on the boards. I find it hard to search for specific treatment information.
Can anyone share about what they are doing or link me to a thread that talks about treatment options? I know about icing but need info on supplements and other treatments people have tried with success.
Thank you
Tricia
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Tricia - you are on gemcarbo, right? my oncologist is not a fan of icing because you slow down blood flow and it could help cancer cells hide out and escape the chemo. for neuropathy on gemcarbo, B12 shots. And depending on what tests may show you deficient in, l-glutamine or acetyl-l-carnitine, although I have heard some opinions that those are not very "anti-cancer" supplements, so avoid those unless the neuropathy really warrants their use. I also do acupuncture.
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thanks for all the info, keep it coming! I haven’t had anything beyond abraxane for chemo and feel I do have tons of others to yet try but I am going to have to push them hard.
Grannax, for y90 don’t you have to have a light liver load? Mine is pretty full with two larger mets. I’m hoping to shrink them down and go for y90.
Thanks
Sarah
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Hi BlaineJenner,
Barbara Bigelow keeps a blog I follow, and I think she is in the same category as Judy Perkins, either in a prolonged remission or potentially cured from metastatic breast cancer, though for her it happened in a completely different way. Dana-Farber is about to start studying her, to see if they can figure out why she responded so well, although her situation was unique and so we cannot replicate but it shows that it IS possible. She has been off all meds for her cancer for I think about two years now, and I'd say she is a good candidate for a second cured person.
In her case, she was originally misdiagnosed-- they thought was she was still ER-positive like her primary tumor was, but in reality it had mutated and she was triple negative, and there was some prolonged problem getting the information from her biopsy, so she ended up taking 10months of Ibrance-Femara with no benefit.
In her blog you can search through older posts, and I'd suggest to pick it up Jan 2016 and read at least the next six months, and then up at the top are the current posts- she went into a clinical trial at Dana-Faber for Halaven and Keytruda. She also had a port installed. But by chance the port became mildly infected, and caused the immunotherapy to make her immune system go into overdrive, attacking her healthy organs. She had fever and BP out of control, kidney dialysis and on a respirator and nearly died. They realized what was happening and dropped the Keytruda and gave her steroids, and eventually she survived. But cancer cells are relatively more fragile than normal cells, and it seems they were cooked well and good. She has been on no meds since, and her doctors are tentatively considering her maybe cured or at least on a very long remission.
Here is a link to her blog, where you join the part of the story that was developing in 2016:
https://barbigwire.com/2016/01/01/triple-xxx-histo...
PS One interesting tidbit from her posts; her docs say she is the one who responded best in the trial (duh) but also that they have seen stronger immunotherapy responses from patients who originally were ER-positive and then mutated to triple-negative, so there must be something different genetically about those kinds of tumors. Anyway, its more hope!!
PPS She uses a lot of nicknames, so her husband Tim is called Blanket and her daughters are the Coconuts...
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Skitzblitz,
AC was my first treatment for mets. I had it late in 2015 and it stopped my high-grade, very aggressive cancer in its tracks, but this was long before I had liver mets. AC wasn't a walk in the park, but I didn't have terrible trouble with it. I was front-loaded with steroids, ativan and anti-nausea meds. My main problem in the beginning was managing constipation, which thanks to a wonderful blog I was reading, I knew how to get ahead of. Drank lots of water, took Senekot a couple of days before and after the infusion and kept prune juice on tap. I had no nausea and the fatigue wasn't bad. Everyone is different, but I'm betting you'll be fine. Stay on anti-nausea meds for a few days after your infusion, too, even if you don't feel nauseous.
Wishing you all the best and let us know how you are doing!
Katty
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thriving: thank you. Do you know the dosage for l-glutamine or acetyl-l-carnitine? Also has anyone heard using alpha lipoic acid and the dosage
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Hartrish,
My Integrative Oncologist told me to take Alpha Lipoic Acid (ALA) for neuropathy when I was on Abraxane. Some others have mentioned the B vitamins like B-12 and B-6. I know BestBird is on here but it doesn’t seem as often. Are you on inspire? Bestbird list supplements good to take for neuropathy on inspire.
I also use Frankincense essential oils for neuropathy. I’m on Taxol now and whereas I started feeling it in both my big toes. After a couple weeks of rubbing a drop of Frankincense I can barely feel the tingling/numbness.
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Katty, thanks so much for the tips. I’m getting scared. There is a doctor in town doing a trial at the local college about cancer and exercise. He has 60 enrolled and wants 80 people. The theory is it to keep exercise to move the chemo through the body and helps it work better as well. I’m going to try as best I can to do something each day.
Thanks again I’ll keep posting!
Sarah
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sklitbitz. That sounds like a good plan. How are your liver numbers doing and bilirubin? It's not always about the amount of tumors in your liver. I had a lot of tumors that were taking high amounts of uptake on PET. I also had mets to lung and chest. Some interventional radiologists might not have taken the risk. Mine did and my liver mets have been inactive for 18 months.
Of course I was able to stay on TX during the procedures, I am almost positive you would have to stop TX. I've only been on Ibrance/ letrozole since January 2017, after being DX with MBC in December 2016.
I've heard Abraxane works well on liver mets.
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I went back to re read your posts. I forgot Abraxane has failed you. I'm so sorry you're in this place. Sometimes local and systematic TX can work wonders, it's all about timing.
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Skitzblitz, the great wonder about Y90 is the high volume of liver tumor load doesn't matter. It is fine for a liver full of mets and is actually not used for a single lesion or only a few lesions. I just had it done in April and June. The procedure is performed on one lobe of the liver at a time between the right and left lobe. Usually, it is performed when mets in other areas of the body are stable but that is not always the case and they make exceptions.
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hartrish - I took 2 tablespoons daily. the product I was on was Klaire Labs L-Glutamine Powder - 5000mg Free-Form Amino Acid
katfuller - you mention inspire. what is that? also, very interesting about frankincense. do you know which one you used (e.g. carteri)?
regarding essential oils, I am curious if anyone here knows anything about phytoestrogens and essential oils? I have heard that lavender, tea tree, and sage can have estrogenic properties, but I have read some conflicting research. My original tumor was ER+ (though my mets are TNBC), so I am trying to avoid things that are estrogenic. Does anyone know? Or have a good data source for essential oils and cancer? Thanks!
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thrivingmamma,
I used the brand Plant Therapy for essential oils. I have not read that the essential oils you listed haveestrogenic properties. I've always read about the healing properties so i also use them in my diffuser (not as often as I once did). My original cancer was ER/PR+ and my mets are still the same. I will definitely research it now. I have definitely at least for myself have benefited from side effects of neuropathy with Frankincense and also when I was on Abraxane my fingernails got really weak/fragile I would rub lavender/eucalyptus essential along with a carrier oil over my nails nightly and I'm convinced it kept my nails from falling off and they were not was fragile.
Forgot to mention about inspire. It’s a community forum for advanced cancers similar to this but the format is different. You can set it to your interest like Advanced Breast Cancer, ovarian cancer, etc here is the link https://www.inspire.com/member-groups.pl
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Hi all, I am constantly struggling with nausea at the moment and its driving me nuts because I cant figure out what is causing it.
I had radiation to my brachial plexus 3 weeks ago. I had an infusion of Carboplatin about 11 days ago and tomorrow I get Gemcitabine. My liver ultrasound shows no new liver mets or growth. My bloodwork shows near perfect levels in all areas except my GGT, ALT and ALk are slowly trending upwards. I get sinus headaches and postnasal drip which I know can cause nausea but it's not that. My stomach isn't bloated and my gallbladder is fine. Onc is still trying to figure out why I have deranged LFT'S and my TM's tripled in a month but scans say all is relatively stable. Really tired of the nausea and not knowing what's causing it.
Adding to my stress is its BC month in Australia and if I read one more time that women with MBC only live on average 2 years after diagnosis I am going to scream. How do we get on with living when others focus on us dying?
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Katty, thanks so much for the tips. I'm getting scared. There is a doctor in town doing a trial at the local college about cancer and exercise. He has 60 enrolled and wants 80 people. The theory is it to keep exercisingto move the chemo through the body and helps it work better as well. I'm going to try as best I can to do something each day.
Thanks again I'll keep posting!
Sarah
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Tennille, sounds frustrating to try to sort out what is going on. Is it possible the markers and liver enzymes could be caused by a “flare" if the chemo is working? Is there another scan you can get like a PET that would show metabolic activity? Does the chemo cause nausea? Hope you can find some answers.
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Sarah i am writing to you first, because my next post might overshadow this info. From experience with Dani and reading on Dr Google, as long as the liver is in working status, the amount of lesion loads doe snot matter. They treat one lobe first then you take a break then the other. Please read up on it. I don't think it helped Dani, but Grannax had it and she did well with it.
Grannax congrats!!
To my oldies, i miss you tonz. Yes, a lot has happened. I'll write up on Dani's thread.
Kaption, the warmest hugs to you. It's been an extremely difficult year here.
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With a heavy heart, i am informing you of Babs passing last night. She was comfortable, in the Hospital surrounded by her family. Just last week i took pictures of her and her family, even though she was heavily medicated, she managed to smile and was so happy her children were there. Babs was quite a lady!
She had been coughing a lot, trying to catch her breath. I don't think it's my place to point out when and where things started going down, but you know my feelings of docs, and i have my own thoughts. When she called me to say "no more treatment" just less than 2 weeks ago, i told her to expand on it, i could not believe it. She was still working, but she wanted to go out on her terms. Then she had an emergency with breathing and she stayed at the Hospital.
She was a good loyal friend. We laughed, cried, cursed together. We finally met for the first time a few months ago. We talked about you guys. I told Babs i would be posting about her.
If you would like to write something here, i'll collect it and send it to the family.
Love you all, ladies you are so gracious.
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Mom and jfl, I’m so glad I asked bc I thought it had to be a little tumor load. Two of mine are larger and a lot of small mets.
I have never had a pet scan or mri. Who knows if insurance is the issue on that, I feel I should ask. I feel I have to start getting pushy and demanding bc I keep asking for my liver to be tested. My dr just replies oh it’s to risky at this point. I try to tell him I see loads of people worse off than me doing these things.
I don’t think my dr keeps me on drugs long enough. He said my liver was enlarged some and I said yes I have read abraxane can cause that. I know my numbers are up some but can be anything. He did the same with Xeloda. Jumped to take me off of it.
I better get looking into this y90. I don’t feel as bad as they make me out to feel.
I just feel my er+ status has changed and it would open my door for other drugs.
Mom, I can’t tell you how wonderful of a mother you are! My mom and I talk and I can’t say we are not close, but she seems to keep feelings to herself or inside. I could never see her fighting these doctors and advocating for me like you have done. My bf, he is there, sits in the chair, but not a fighter. Both these people I really need to fight for me when I can’t, are the people who say “just do what the dr says”. I get so mad and screw the dr they don’t known know everything.
Thanks again for the help.
Sars
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I do not post here much at all. But I wanted to say how deeply saddened I feel to learn about Babs. When I first started in this community BCO. She was one of the first to welcome me. Her lovely family photos. Her happiness shown through her love of her gorgeous grndson. I am beyond words at this point. The losses are so surreal. I am sending love to her beautiful family and to her sweet daughter, you're so beautiful and your mother was clearly so proud of you. Rest sweet Babs. No more cancer anymore . Much love ~M~
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I feel teary hearing about Babs I felt as though she was such an amazing woman, inspiring. And she was the y90 queen! I'm glad to hear the y90 did not fail. It was the lung mets that went crazy.
She loved her family and grandchildren so much. Just like I do. I'm glad she spent as much time with them as she could. Praying for her family.
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