How are people with liver mets doing?
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Candy, wonderful scan news! It sure is nice to hear a bit of good news around here. I hope Ibrance continues to keep the mets at bay for a long, long time.
Elderberry, although NED would be ideal (mets undetected), and NEAD is very nice (no active mets - may still there but in hibernation), all you need is stable or stablish. The liver is such a resilient organ. It only needs about 10% to function. People with other diseases can have their entire left lobe removed and function fine. When the treatments zap the cancer in the liver, the liver regenerates itself. I read an article that stated that the liver is not a complainer. So very true. It can withstand so much. I just read on another thread someone posting that Xeloda had worked for 6 years on his sister's liver mets and she was now just moving on to another treatment (Halaven, I believe).
I have my port put in tomorrow morning. It has been so long since I had a port - 2007. I am so happy to hear that the technology has improved and ports can be much smaller now. My port back then was enormous and very high profile, bulging out of my skin. I am hoping they will give me a small port.
I officially start Navelbine on Friday now. I have been researching Navelbine and Tamoxifen and found some articles that Tamoxifen has a synergistic effect on Navelbine. Very interesting. That may have played a part in why my MO suggested it.
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Uhh, I am so overwhelmed by what is happening on this thread. I follow everything and sometimes want to write something, try to encourage... but then I think "who am I to write here", being only a husband to stage IV wife... I tried to read all these threads for relatives but they never were my thing. We with Sandra are very close, and her pain is my pain too. I know, many would not want their spouses to be with them ,,in cancer world" together, they would want us to live our lives, be free, but then I sometimes feel that while advocating for her (she herself does not want to know much about it and has her own ways to heal) I take away some burden off her, take off part of the pain. She never asked me to but I feel so happy when she silently accepts me going with her to medical centers, reading all those reports, digging into clinical trials and genomic tests, trying to find complementary medicines... So that is why want to write here, so that is why I feel in this thread like I belong here, and not on other threads for relatives. If someone does not feel like I should be writing here, please tell me, I will understand it.
And so... some news! I write as my Sandra is getting her 3rd THP infusion after the relapse in February. I am so sorry for her as she is getting her 15th Taxotere in just 20 months. BUT! She seems to be reacting well - after 2 treatments almost all external IBC symptoms are gone, and we hope to continue this way, although Taxotere is no walk in the park.
To everyone on this thread: I send you all my thoughts and courage. And expiration dates - doctors were wrong too many times writing people off... they better think of how to treat and revert the situation, and not juggle with expiration dates. Just my opinion, sorry...
Saulius
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Saulius- You write on here anytime. Sandra is lucky to have you at her side in this fight. I wish we could all be that fortunate. We are here for you too.
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I have the results of Bone and CT scans from today: NO new metastatic lesions seen. The liver lesions are healing or healed..words like dystrophic and retraction were used. My MO said that meant they were dead. Labs okay, CA 15.3 slightly increased..but that fluctuates.
So onward to the next 3 months.
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Great news, Sandi!
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Yay. Good news and may the next round be as good!
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After just one treatment of carboplatin/Gemzar, we have run into low platelet problem. I have read here that papaya leaf extract helps with the low platelet problem. We were wondering if we should take papaya leaf extract tea or capsules. How much? Any info in this regard is much appreciated. Thanks
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Thank you Candy-678, your (and others') support means a lot to me and other husbands that are here educating themselves, gathering knowledge and advice. I'll post from time to time to tell what's going on with us.
Dear Bornfighter, quite a few people at our NCI, whom I met, use honey, good cognac and mashed bot-cranberries mixed together at equal weights (eg. 100gx100gx100g). You take a spoon of that mixture every day. We did not try it but all ingredients are known to be good for blood, so maybe a mix of them is even more powerful. It is still on our list...
Saulius
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HI Bornfighter,
Sorry to hear you have had problems after 1 dose of GemCarbo. I was really ill after 1 dose and then had low platelets and the Gem part was delayed a week. I think my body was in shock from the drugs.My Carbo was dropped, and I have had no blood problems since then, and on Cycle 10. The combo reduced my lung tumours and kept it stable since then. I hope you get your treatment soon...
Best Wishes
Lizzi
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I lost my post. Grrr
I was only gone a few days and so much has happened. Katty, what did MD A ER say? Sunset, I hope I answered most of your questions on PM. Gracie, I'm one week today on X, diarrhea SE subsided after a few days. I do still have nausea, dizziness, taste issues, etc. But definitely better. I hope this means my body is adjusting to X. I'm in this for the long- haul.
Oh how I hate MBC, for myself, our families and everyone here. My poor daughter went with me for genetic testing appt, ordered by my MO. I was surprised to learn they now have isolated 35 gene mutations. Back when I had testing done 20 years ago, they only had two. Still it's a needle in a haystack chance, with that being less than 1% of the total of genes. I was also surprised to learn there is one mutation known to be associated with MBC and Pancreatic cancer. So, they tested my daughter, too. My husband, her dad died of PC in 2010. Poor girl. She told the counselor that BC has devastated our family. Not, quite I said. My side of the family does, obviously, have a broken gene but who knows if we will ever find out which one. So, the whole family on both sides want to be tested. Oh, my.
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SandiBeach-- Yeah for the good scans!!!!!
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I'm not sure if anyone has advice on this, but... my ONC, who I respect and has kept me alive for almost 8 years, does not want me to get a laparoscopic liver biopsy for Dr Nagourney because he is afraid if there is an complication that my y90 will be delayed...and I really need to do that. Also, he's not a big Nagourney fan because he goes against the mainstream science ways of doing things. On the other hand, in staying mainstream, I'll be lucky to have two more years...tops. I would like the option of some other possibility....no matter how small. I'm very torn. I don't wants to delay y90, but I really want that tissue. Any advice?
Sunset
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Sunset,
Maybe you can do the biopsy on the lobe they won't do first? So, if there is a problem, the biopsied/second to be treated lobe will have time to heal?
Is your MO pushing back because he dislikes Nagourney, or he truly believes that the biopsy might delay the Y90? Ask him what he fears - in detail - to tease out the real motivations.
How willing is your MO to color outside of the lines? Like you, I'm running out of conventional approaches, and I need to have that talk with my beloved MO, who has pretty much saved my life twice now.
Should we open a new topic for Hail Mary maneuvers?
Jennifer
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Sunset,
I forgot to add: Do you have access to the tumor chunk from your mastectomy? If it's not too old, that can be used for pathology/genomic testing.
Jennifer
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Jen, I don't think I have access to old tissue.
The right lobe has the best and easiest access to a larger tumor. It also needs to be done first, because it is more heavily burdened. My MO is mostly concerned about the possibility of having to delay treatment while potential complications heal. Apparently I don't have a whole lotta time. Right now my liver is functioning normally and numbers are good, as of a few weeks ago. But I haven't had chemo in 4 weeks and he says with the amount of tumor I have, that could change at any time, and that could become a problem for treatment. A lot if what's ifs. Still, I'm inclined to take the chance. Gonna die anyway, right? .
Seeing Nagourney today and will get a better idea of biopsy risk.
If you and I can hang on another 8 months or so, there is a potential Hail Mary out here at the City of Hope...possibly ready for trial around then...and WE would qualify (for a change).
Sunset
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BeautifulSunset, you have been on my mind constantly since this latest news of bad liver mets. I have three ideas to contribute to the brainstorming. First, could Dr. Nagourney do anything with a liquid biopsy? Let him look at what mutations each company checks and customize it as desired. Second, can Dr. Nagourney start some things with you and then look for an opportunity to get a tissue biopsy some time after Y90, perhaps at next progression when you don’t have this option (Y90) we know is a good one? Third, I wish you would consider going ahead with Y90 right away even if it means you may be running at half-speed for the wedding festivities. As far gonna die anyway, some extra months or years do matter, don’t they? Get at least eightmonths out of Y90 and then maybe the trial will be there for you.
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a beautiful: what trail are you talking about from City of Hope?
Let me know how it comes out with your visit from Dr Nagourney. I have him on my list as well when I think I need him
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Shetland I answered you on DM.
Hartrish, it's not a trial yet. But if you look up Oncolytic virus, city of hope and Dr Yuman Fong, there area few medical articles about what he has been researching.
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I have never posted on any thread, but wanted to share my thought process.
I was diagnosed Stage 4 Oct 2016 with bone and liver Mets. ER+ PR+ HER- None of the Hormonal treatments work on me - never have. Seems my horomones are non functioning Ibrance failed as did Affinitor (doubling my tumor markers in 1 month). Xeloda was a good fit - 18 months and NEAD - until it failed.
After hearing about patient Perkins, I contacted NIH / NCI about their Immunotherapy trial. Sent all my information, scans etc to be evaluated just to see if I qualified for an interview. First hurdle passed. Went to Bethesda to meet the whole team, had a slew of tests (including MRI of the Brain) and lots of blood work. Felt good to be given the green light to proceed. Waited 30 days off medication and scheduled Apheresis on a Monday and Liver lesion extraction on a Thursday. Now I have to wait about 3 weeks to see if my cells grow. Then another couple of weeks to see how many mutations they are able to detect. If all goes as plan, they will freeze my cells until I am ready to proceed.
I will start my first IV chemo next Tuesday - Abraxane. If this treatment is successful, I can stay on it until it fails, then I can decide to continue with another conventional treatment or go with immunotherapy.
This is still in early stages, but at least there is a glimmer of hope. However small. I do feel this is the wave of the future fight of cancer. I have also been told that if the treatment does not work, I am able to go back to conventional therapy.
I just wanted to share my treatment plan with you all. I have explained this in very abbreviated form.
Never, ever lose hope!
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You go, LoMa! I'm thrilled for you.
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Sunset,
Given all the variables, buy time. It seems like the y90 will do that more reliably.
I grew up hearing the story of Dr. Banting, and the development of insulin. The way my father told it, Dr. Banting administered that new, crazy drug, insulin, to kids that he had been keeping alive - barely - with a strict ketogenic diet. Within hours, it was obvious that these kids would live. Families that had started the day fearing the worst, ended it with hope.
So, we need time.
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ABeautifulSunset, is your MO specifically against a laparoscopic biopsy or any biopsy? Why does Dr. Nagourney need a laparoscopic biopsy - is he looking to remove an entire tumor? I had understood that an entire tumor biopsy would be done either via open surgery or laparoscopic and that an ultrasound or CT-guided biopsy would be done to take a chunk of tumor. Removing the entire tumor is much more dangerous - my DH, a surgeon, was not on board when my MO recommended to fully remove two active tumors and give me a ton of tissue to biopsy now and later. As between open and laparoscopic, my DH said absolutely not re: laparoscopic if I did have a full tumor removed. Much more risk of the liver bleeding and not being able to see it. I was surprised as DH performs many laparoscopic surgeries of various organs in the abdomen and has advanced training in the method. Anyway, would your MO let you do an ultrasound or CT-guided biopsy, which is what most of us get, is much less invasive and is much less risky? An IR inserts a needle with a hole into the tumor, sucks out a chunk of tumor and that is it.
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LoMa, really happy for you.
You might want to check this thread out. It's informative and hopeful with all the trials discussed.
https://community.breastcancer.org/forum/8/topics/868597?page=8#idx_218
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LoMa, congrats on making it into the immunotherapy rial. Was this the TIL trial that Judy Perkins did or a similar trial? If it was the TIL trial, I presume you tested positive for the mesothelin or whatever other proteins they are looking to detect? Please keep us posted on how your trial plays out! Very cool that you can freeze the cells and reinsert them later.
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JFL - Yes it is the TIL’s. This is the same trial, but they no longer look for protein or check point inhibitors. They are more interested in your mutations and how your T cells recognize the mutations. And their genetic testing is by far much more detailed than Foundation One, thus having more mutations recognized. Once they find the T cells that match the mutations, they now grow them by the BILLIONS. They no longer needto find many, many mutations.
This is open to anyone. They also don’t care if you are ER/PR + or TN. They just care about the mutations and the T-cells.
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Very exciting LoMa! At what point do they do the genetic testing to see if you have mutations that your T cells recognize? Is it after the
liver lesion extraction? Does it seem to matter if you have had many previous chemos?
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LoMa, for the TIL trial, did you have to spend a lot of time waiting (without being on treatment)? I had spoken to the trial coordinators a while back and was frustrated because they told me I had to be failing a medicine and then couldn't take anything while going through all the paperwork and approval phases, which I have heard can be 3-4 months sometimes. That was in 2018 or 2017. They may have changed practices.
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It seems, after looking at the requirements, that I might be able to get an interview at least. Did they cover your medical costs, as many trials do? I hope you are able to get a good run on your latest chemo, but do keep us posted if you start the trial. I know all of us will be pulling for you!
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Welcome, LoMa! And thank you so much for sharing your story with us, that's wonderful news about the trial! We're keeping out fingers crossed for you, and look forward to your updates!
The Mods
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Sandilee, as soon as I was done with the apheresis, the lab came and picked up my cells and began working on getting them to grow. That can take 3 weeks. Days after the apheresis, they removed a superficial liver lesion that also went straight to the lab to harvest my Tcells in the tumor and get my tumor mutations. This whole process can take 2-3 months. If my cells only recognize the mutations weakly, then there is a program to enhance the Tcells to recognize the mutations more strongly. That can take 6 months. I do not know if they have a limit on “amount or type” of chemotherapy. This is a government trial, so they cover all medical costs. After you are accepted, they will also cover your flight. For my latest tests, I did not have any expenses. Call them and see what they say. You will need to submit progress notes, history, scans, etc. They will give you a list of what they need. Then they will convene and decide if you might be a candidate and if yes, invite you to come. Your first visit, you will need to supply your travel and hotel. Once you are in, they will supply airfare and your stay in the hospital.
JFL - We had started sending paperwork back in October, but my liver lesions were not big enough. Affinitor failed quickly causing my tumor markers to explode. We sent them my liver MRI showing growth and the team said that it was the right size. We were aware that they needed me to be 30 days medication free. So we were proactive. They made all the appointments for after the 30 days. While all the testing is being done, I am encouraged to seek traditional treatment until it fails. They just ask that they be informed as to any changes in traditional treatments.
I do know that an exclusion would be having brain Mets. They do a brain MRI to verify you are clear. They have been great to work with and very responsive
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