How are people with liver mets doing?
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JFL - The fasting with chemo is not done in clinics and trials with chemo that is being administered on a low dose weekly (3 week on/one week off) schedule. It makes most sense with high dose/once every three weeks. However, I won't do the high dose regime, and I won't do chemo without the protective effects of fasting so I am pushing the envelope as usual. Experimenting with the fasting mimicking diet with next IV, but it remains to be seen whether eating re-hydrated food out of packets for 5 days is an improvement over nothing at all.
I lost some weight, but a significant portion was ascites which have resolved. I have been able to negotiate to spread out the Abraxane dosing schedule a bit to increase the ratio of non-fasting to fasting days. My weight seems to be stabilizing but it will take a couple months/cycles to tell. I run during the IV and exercise the day of the IV to increase the effective dose. The fasting should add to that effect. Hoping that more than makes up for the schedule changes. It's an experiment.
Yikes on the re-testing issue. I've already asked Mayo to re-test. I hope that doesn't botch things ... Will call on Monday.
Caris is among the more complete tests. They post their profiling menu online. I did not see those that they test for expression of those ligands now, but did not spend a lot of time on it. In any case, if it becomes relevant to clinical decisions you can be sure they will. I suspect my local pathologist office could figure out how to get it done as they seem to like a challenge...
The general rule with biopsies is ... you can't get enough tissue and you need to hold on to it.
https://www.carismolecularintelligence.com/profili...
>Z<
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Z- Only thing I see in ASCO, other than RET, is phase 3 SANDPIPER (PI3K inhbitor +Faslodex) results are embargoed for a June 2 press release, so presumably good results. That trial is completed enrollment, collecting data stage.
Another bit of info I thought was interesting pertains to how immunologically hot or cold different breast cancer subypes are, and how often they change between primary and metastatic sites. We knew triple negative and HER2-positives can respond to immunotherapy, but here are the numbers explaining why:
Among 173 recurrent tumors, specimens were metastatic lesion to liver, lung, bone, skin or soft tissue, lymph nodes, and others in 19%, 27%, 16%, 15%, 14%, and 8%, respectively. In primary tumors, 89% were HR positive and 11% were HER2 positive. ER, PgR and HER2 status changed from positive in primary tumors to negative in recurrent tumors in 8%, 40%, and 6%, and changed from negative to positive in 15%, 15%, and 7%, respectively. Accordingly, breast cancer subtype change between primary and recurrent tumors was seen in 13%. High TILs in primary tumors were seen in 22% of patients and significantly associated with breast cancer subtype; HR+HER2-, HR+HER2+, HR-HER+, and HR-HER- in 16%, 36%, 67%, and 62%, respectively (p< 0.001). On the other hand, high TILs in recurrent tumors were not correlated with breast cancer subtype, but the site of metastasis; high TILs in 6%, 39%, 12%, 8% and 19% of liver, lung, bone, skin or soft tissue, and lymph node metastases, respectively (p = 0.002). In 71% of recurrent tumors, TILs did not change or decreased compared with primary tumors, whereas in 29% TILs increased in recurrent tumors. Among recurrent tumors with increased TILs, most frequent metastatic lesions were lung (40%), and bone metastases were less likely to have tumors with increased TILs (7%). High TILs in recurrent tumors were a positive prognostic marker after recurrence, whereas those in primary tumors were not. Conclusions: TILs as well as hormone and HER2 status altered between primary and metastatic tumors. Immunological tumor microenvironment may depend on the site of recurrence and evaluation of recurrent tumors is required in the immunotherapy era.
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Cure-ious - fascinating.
The HER2 numbers are interesting, but complicated by the fact that our tests for HER2 status are somehow flawed. There is a growing consensus that more women are HER2+ than pathology/biopsies show. I don't understand the underlying issue myself. Would be interested in an explanation.
Regarding TILs, the odds of TILs in MBC are low for ER+ cancer any way you slice it. (TNBC friends, notice the TIL infiltration of ERPR- MBC, this is an important indicator of response to immunotherapy.) The challenge for ER+ is to increase immunogenicity/TIL infiltration. My immunotherapy team says the only sure way, at the moment, is to drive the cancer back so that all you have are micro-tumors not seen in scans. Micro-tumors have no real micro-environment that can disable the immune system.
Tks.
>Z<
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Zar- There is a bifunctional (two binding sites for the drug on the HER2 receptor) HER2 antibody called ZW25 being tested in combination with chemo for HER2low cancers, phase 1, to keep an eye on if you are HER2 positive-low.
http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.4_...
Also this 2017 report that trastuzumab (Kadcycla) is not functional for HER2low cancers, that apparently is true for several of the HER2 therapies, they require really high levels of HER2 to be effective.
http://www.cancernetwork.com/sabcs/trastuzumab-doe...
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"Breast cancer patients received a median of six prior HER2-targeted regimens for metastatic disease; partial response in 56% (5/9) of breast cancer patients with measurable disease, with 89% (8/9) experiencing a decrease in target lesions."
Cool. Tks Cure-ious. Bookmarking trial. Will track it.
>Z<
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Geez, I miss a few days and boy, things keep hopping!
I have to say you women are AWESOME! I went for a liver biopsy on Friday. The radiologist could not get a sample. My liver lesions are too ill defined and according to him this is due to all the different chemo treatments I have been on. I mentioned can we get an MRI to better clarify? (Read this on this board) He told me the radiologists were just discussing that specific topic that morning and he wanted to know how I knew about it! Of course I told him and now I will be trying to get the insurance to approve it so I can find out why my markers have doubled in the last month. Onward ho!
Thanks everyone for keeping us up to date on the latest and greatest so we can continue to celebrate life making each day the best day we can make it. 💓
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Nice work celebrate life. I have many similar stories of how reading other people's experience has led me to ask the right questions. Please keep sharing your story as it will certainly help others.
>Z<
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Hello ladies,
Still hanging out on the sidelines praying for all of you. LMWL, please feel free to call me anytime. I pray for you and your precious daughter each morning and evening. I am glad that you posted the update for everyone so that more of your BCO family can be praying for you during this time of transition.
I have to admit, I haven’t checked this thread for a week because I was afraid that I might see a post from Bryan about Missy’s passing.
Bryan, I have been praying specifically for Missy daily and will continue praying for you and you entire family for quite some time. 🙏🙏🙏
My Princess lost her battle to this monster one year ago this coming Tuesday. Grief sucks, but it does get better. I am having some landscaping work done Tuesday morning to honor Karen. I am having two beautiful Vitex trees planted in our front yard in memory of Karen.
Peace to all,
KDs-Husband (Louis
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KDsHusband, it brings me comfort that our spouses can and will continue their lives when the cancer wins. So maybe cancer doesn't have to take away everything that is meaningful to us. Live on you beautiful men and all those left behind.
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So I finally call for my liver biopsy results. All it said was consistent with original breast cancer. Nothing about her+. What the heck?
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You need the report itself. sometimes they "dumb it down" for the patient. Sometimes the person delivering the results knows nothing about MBC, what's important, what is not. As I recall you had it done at Cleveland Clinic. If so the pathology will have been done properly and all the info will be in the report.
>Z<
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Been reading along. On the DS8201 trial which after two rounds shrank the 2.7cm tumor to 1.7 and the 1.5cm tumor down to almost nothing. I am cautiously optimistic and hoping to get a long run on this trial because my longest run so far has only been 9mo on Tykerb and I could use some better news.
Still sad about Missy and also wanted to let you know that I saw on FB that kaylynne died last weekend. Two of our TNBC sisters gone with a few weeks of each other...I hate cancer!!!
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Bad_At_Names, I am sorry to hear about Kaylynne's passing. I know she was having a rough time, but I was hoping she would begin a new trial that would be the miracle she needed. It is sad learn that we have lost another member of our MBC family. I pray for peace and comfort to Kaylynne's family and friends. Rest in peace
Hugs and prayers from, Lynne
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Bad_At_Names, Your results after only two rounds of treatment in your trial are dramatic and encouraging. I hope you continue to see success for a long time.
Hugs and prayers from, Lynne
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bad at user names - thanks for letting us know about kaylynne’s passing. So sad to lose her. Her last post here was just May 9. How does this happen so fast? Cancer sux
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Hi Ladies. It sounds like everyone is having struggles these days. I think I told you that I had liver biopsies in April. Both lobes involved and my liver enzymes have been going up and down. Xeloda didn't work for only 9 months. They changed my medication to Afinitor 10mgs.every day. I started feeling out of breath and could hardly walk too far without turning pale and feeling the need to lay down. I had blood work, fasting two weeks ago and my good cholesterol is down to 24. Then they say don't eat things with animal fat so i have been trying hard to just eat whole foods.
Yesterday more blood work. My local MO called and said I need a break. My triglisorides are almost 700 and my platelets are 45,000. All red counts are so low she took me off the medicine and wants to see what will happen in a week. I'm so tired and feel like I could sleep standing up! I hope this medication will work, my liver enzymes and bone stuff went down, but the medicine is killing everything else. Now I have to rest. It is my busy season at the Greenhouses and I'm not sure how I can deal with this. I think she will lower my dose of Afinitor after my next round of blood work but this is terrible. I don't think I have ever felt to bad except before I was diagnosed from the beginning two years ago. Has anyone else had this experience. I'm thinking I need to go to Boston to my main MO and just talk to him. Scary stuff as you all know. Sorry for venting, but I know you all understand. The beast within just keeps us scared and always on the edge.
I hope you all are doing ok. I pray for all of my sisters every night.
Love Anita
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hello Anita,
So sorry you're suffering from the SE of Afinitor, it's to be expected at 10mg.
I was on 7.5 mg and the SE made it impossible for me to stay on it. I suffered from a constant dry cough, extreme fatigue, debilitating aches and pains, extreme mental fog, high blood sugar and high blood pressure. No mouth sores because of the steroid mouthwash, but that caused insomnia and weight gain so I had to stop taking it.
Lowering the dose will help, but the SE are accumulative. It's taken me three weeks to clear the SE by taking massive amounts of brain foods, minerals and vitamins.Im waiting to get results from pet scan and meet my new MO to find out what my TX might be.
I wish you well....but be careful, especially if you have breathing problems, it could lead to a permanent diminished lung capacity.
I m shocked to read about the loss of Kaylynne. She was supposed to start a new treatment, and now she's gone. I'm finding hard to understand how our bodies can give up permanently so quickly
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I'm back from my wonderful vacation ( Disney Aulani in Oahu) only to read such sad news here. Kaylynne, it seems like she was here only a short time.
Photogirl it seems like you're having a really tough time on Affinator. Do you know yet if it's working? But, if it's making you that sick how can you continue on it? The more I read about Afinator the less I like it.
My PET is this Friday, results on Tuesday. I dread both the prep on Thursday and hearing results on Tuesday. As you know, the communication with me and my MO has been unacceptable recently. This visit will determine whether I stay with her. Also there is reason to believe that PET will show progression and that new treatment will be AA. You all know how I feel about AA. 😤
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Just chiming in about Miaox 's thoughts about dose flexibility. I have needed reductions in every treatment I have been on. It has helped SO much. I could sustain treatment and get a decent effect. I did not do well on Affinitor, I felt like crap, and stopped after 6 weeks. Unless you are going for the cure, there is wiggle room with most dosing. I am always juggling QOL and treatment effectiveness. Its not for everyone but it is a way to keep going with mets.
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I'm so sad for kaylynne's passing, i really liked her sense of humour even when all the treatments were failing her, she went so fast..
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Anita a blood transfusion could give you a bump, the numbers are low enough, is this a consideration? it seems to me that Afinitor is a monster few can handle, Dani did not do well at all, she got off it so fast, and e/o here seems to have a hard time on it, it could be a good tx but it's not really practical.
Grannax so happy you had this fun, crossing fingers for good results.
Lisajo Z is on the button, there is no way this is an acceptable report. Request either from the doc the full report or you could call the IR that did it, and request from them. Either way you need more info. Let them know that YOU know this does not make any sense.
CelebrateLife good for you. Hopefully they will be able to do it after all.
Z totally understandable how you would like to be there for the kids and have some peace before you deal with traveling again and the rads. One day at a time. You know it. Sending you strength my friend.
Curi-ous thanks for all this important info. Now they are starting to rethink the tx for HER2+....do they know anything??
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ok, my biopsy came back ER-pr- the Her2 was a 2+ so now they have to do the fish test. So if I end up triple negative is that harder to deal with
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lisajo6: the answer is yes and no. If you are triple negative then the hormonal drugs will not help since the tumor does not thrive on er or pr. But immunotherapy has been options for triple negative therapies.
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House to vote on 'right-to-try' bill for terminally ill people
CNN
The House of Representatives is expected to vote on legislation that could give terminally ill patients the right to seek drugs not fully approved by the FDA. Read the full story
Shared from Apple News
Sent from iPad
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lisajo - If you are HER2+ you are not triple negative. You would be TNBC if you were ERPR- and HER2-. HER2 gives you access to potentially great treatment options. If you are ERPR- and HER2+ things are looking good. You are about to get access to some effective and relatively easy treatments. Hang in there. Fingers crossed that you are wildly HER2+.
I called Dr. Ulaner who is principle investigator of the following trial. JFL and I have been discussing this trial on this thread.
Can HER2 Targeted PET/CT Imaging Identify Unsuspected HER2 Positive Breast Cancer Metastases, Which Are Amenable to HER2 Targeted Therapy?
In this trial the inject radioactive Herceptin rather than radioactive glucose and then do a PET scan. Tumors that are HER2+ will light up ... It's a more thorough way to determine whether a person is HER2+ and therefore get access to the drugs for HER2+ cancer . It's easy to miss a HER2+ tumor when they just biopsy a random tumor.
I had a really good talk with Dr. Ulaner. Amazing to get 10 minutes with an expert in whether and how HER2- cancer becomes HER2+ metastatic cancer.
Dr. Ulaner said that HER2+ cancer would not typically respond to Abraxane the way I am responding. Therefore, I am not a good candidate for the trial now. The best candidates are people who failing chemo and hormonals. In that case, there is a possibility they had a "HER2 breakthrough" and the HER2 is driving resistance to treatment protocols. HER2 treatments would be worth trying at this point.
The real criteria for this trial, therefore is ..
- Originally diagnosed as HER2-, and
- Resistance to both chemo and hormone suppression.
I know there are some people in this boat. I would encourage you to consider this option. You can ask your doctor to call him or call the number listed in clinicaltrials.gov. I did the later.>Z<
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if anyone is interested here is the link to Kaylynne's orbituary: http://www.smithandkernke.com/obituary/Kay-Lynne-Edgar/Oklahoma-City-Oklahoma/1797765
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So sad to hear of Kaylynne's passing. I feel like each and every one of you are my friends, and its so hard to take.
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Thank you Vilma. Sending the best to Kaylynne's family.
Oof. I've run out of words.
>Z<
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What a beautiful woman Kaylynne was. Her obituary speaks volumes. My heart can't bear any more. I don't speak much, but follow closely. Each of you mean much to me. I hate that all of us must endure this.
Mary
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I was wondering if anyone can tell me if good blood work The best in months and I am on doxil could possibly mean chemo is working?
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