How are people with liver mets doing?
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Lulubee, interesting that the drug manufacturer has discontinued production of Alisertib. It is all a financial game. The drug is considered an "asset" even if not in production and good trials will make the value of the asset increase exponentially. Drug companies sell production rights and/or marketing rights of drugs to other companies and enter into various licensing and co-marketing arrangements when it is not cost effective for them to bring a drug to market themselves. Sadly, the decision to pursue certain drugs over others is not always driven by which one is the most effective.
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I had scans last week and my mo said I have liver mets now. Bone mets are more extensive, too. Kind of scared. I will stop the arimidex but pick up Faslodex with the Ibrance.
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Raine-Wells, I hope you and your med team get a new plan that is very effective.
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Raine-wells-I did both Faslodex and Ibrance seperately. Faslodex was my first treatment, when I the cancer came back after 7 years (I was originally stage 1, in 2005). It worked for 1 1/2 years for me. The Ibrance I was only on for 6 months. I hope the treatment works well for you! Hugs!
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I have AWESOME news. My liver biopsy from last month confirmed I do NOT have pseudo cirrhosis! I am relieved!
RaineWells, Faslodex has worked great for me and with the addition of Ibrance, I hope you get good results for a long time.
I have been following the thread and it has been very interesting.
Therese
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I am going on vacation so I kinda wished I could change trewhen I get home. I’ll get the 2nd set the day before I fly to Boston. I usually lurk on here, but the doctor seemed more concerned than when it was just in my bones.
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Raine-Welles, I switched from Arimidex to Faslodex and Ibrance when Mets were first detected in my liver. My liver Mets quickly began to shrink on the combo, and I remained on Faslodex and Ibrance for two years. I found it to be a very easy treatment plan. I still feel great,and although I recently experienced progression, my tumor load is still
lower than it was two years ago. Good luck with your new treatment plan.i hope it works for a very long time. Enjoy your vacation. Faslodex shouldn’t interfere with your trip.i flew to Hawaii two days after my 2nd set of Faslodex injections and had no issues. Just remember to follow on the recommendations on the Faslodex thread when you get your shots.
Hugs and prayers from, Lynne
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CL, great to read your good news!
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The Carboplatin and Etopocide chemo combo that I started on in early May didn't have the dramatic effect on the numerous tiny neuroendocrine tumors in my liver that was expected. The PET showed some minimal improvement, but not enough to go forward, and there were a couple of other non-organ areas of uptake. Still no liver enlargement or pain and my values are good.The rub is that I have two types of BC tumors in my liver (high grade neuroendocrine and hormone-driven, like my *original* tumors) and it's nigh impossible to tell which is predominate, so my onc is putting me on Afinitor and Aromasin for 8 weeks to see if hormonals have a greater effect. I've read about the awful side effects of Afinitor, but will give it a go and try to stay on top of them. I've been lucky so far, since 2015...keeping my fingers crossed!
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CelebrateLife, wonderful news regarding no pseudo cirrhosis!!! Did they give you any further info on what is causing the changes to show up on the scan?
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JFL, I haven't seen the onc yet to ask the specific questions. The pseudo cirrhosis was my biggest concern, because fighting two diseases is much harder than one. I am still waiting for all the results from the liver biopsy. I am thinking that because the liver tumor is 5 cm, it has to have some effect on the texture of the liver itself. I will find out more at the end of the month. 😊
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celebrate life: great news about you liver. Hope you get some more answers when you meet with your ONC.
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Kathy smith: sorry to hear your news. Hoping your new tx is effective. Hugs and prayers your way
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Raines-wells: sorry about your news. Hoping the new tx works with no or minimal side effects. Hugs and prayers your way
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For anyone searching for a new trial, here is one that tests a new type of targeted drug, which is a CDK7 inhibitor, and in pre-clinical studies it looks good for breast and ovarian cancer, and certain other cancers that are boosted by a protein called c-Myc. They just started phase 1 last year, but that was for only 35 people so hopefully they move into phase 2 sometime soon. I think right now this trial may be just at Dana Farber in Boston, and no idea if for phase 2 it would move to additional locations. But the technology is promising.
https://clinicaltrials.gov/ct2/show/NCT03134638
Oh, I see phase 2 is expected to get underway in "mid-2018", and results of phase 1 will be known at the end of this year...
Also, this drug tested well in HR-positive as well as triple-negative subtypes. The trial will test CDK7 inhibitor alone, or as a combo with Faslodex or Carboplatin.
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Dear Liver Buddies -
I need some perspective. I love my MO, and feel that he is responsible for my continued existence.
But, the office messed up timing in sending out my old slides for precision pathology. We all knew that I was failing Doxil for about three months, yet the office did nothing to move forward precision pathology on my old tissue from 2006, and they did not set up a second opinion at Roswell Park Cancer Institute for trial evaluation until I had been without treatment for 6 weeks. Why did they never tell me these things were an option in the last year when I was asking for help finding trials? I didn't know that my old tissue was available for genetic testing. Ack - I feel so ignorant.
And, today, I found out from a trial evaluator that an EKG I had requested in February 2018 showed signs of a small MI. I remember that EKG, and I remember the nurse telling me that it was perfectly normal. When I asked the nurse navigator today about that, she told me that the EKG results were abnormal, and that I did probably have some minor heart muscle damage from some sort of event. Oh, maybe like the chest pain I was complaining of that caused me to ask for the EKG in the first place, while on Doxil, a known cardiotoxic drug?
On the other hand, my favorite NP caught my DVT when my ankle was only slightly swollen and I had no pain at all. She took one look at it, and sent me off for an ultrasound with a package of three days worth of heparin injections already tucked into my backpack. That's what I'm used to from this office.
There is no other MO in town, and this is an office with three docs. I could drive into NYC (4 hours) or Buffalo (4 hours) for treatment, but I'm not a good driver. I will be asking pointed questions, but WTF? I have been cruising along for six years, thinking they had it handled, but these events are giving me a huge dose of doubt.
Why does cancer have to be such a pain in the ass?
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Cure-ious, is the drug in the study you mention specifically supposed to help those with overexpression/amplification of MYC (specifically c-MYC)? I ask because my F1 report noted an MYC amplification.
BlaineJennifer, very unacceptable that those issues were missed and not processed in a timely manner. I have been down that path and it is beyond maddening and mind blowing. However, you do run a risk of switching MOs and the new facility's staff have the same issues - that the ball is dropped on occasion - plus any other potential issues (distance, lack of chemistry with MO, lack of bedside manner). Since you have been pleased with your MO on balance over last 6 years, it may not be worth it. At the end of the day, none of the medical staff/facilities care about us as much as we care about our own lives and I find myself having to be overly vigilant to ensure the ball is not dropped or clean up the mess when it is. We shouldn't have to do that but it is a reality.
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Hi all- thought this was interesting. It was on Twitter - by Dr Rosenberg - the father of immunotherapy @ NCI.
Dr Steven Rosenberg @NCI_CCR_SB advises someone with a cancer diagnosis to seek out multiple opinions about the best care options -- and recommends the NCI Contact Center, whose information specialists are knowledgeable & caring bit.ly/2J8cUGA @ItsSurvivorNet
Not surprising for him to recommend the NCI.. but if possible may be a good thing. I go to a highly rated cancer center 5 hours from my home. Thank goodness my husbandhelps drive but am considering a third opinion.
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Hi BlaineJennifer - I agree with everything JFL advised. We are constantly telling each other that we are our own best advocate. It shouldn't be that way but it is. Ugh!
(((hugs)))
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BlaineJennifer, I agree too. sometimes balls are dropped. I am due to start the next round of Xeloda and just had to chase down my oncology pharmacist to put the order in. I explained that I was leaving for an overseas trip on Monday and wanted to be sure I had the meds. He still seemed lackadaisical saying the pharmacy usually has it in stock but his better self kicked in and he called to double check. Usually he is great and callsearly in the week to see how things are and check the blood work but not this week. If I had to go two weeks without treatment that is small potatoes compared to your six weeks. I have always thought the most important thing is to have faith and trust in your MO. It sounds like you do and he is not really the issue. It's the "stuff happens" with any organiztion that can make cancer so much harder.So sorry to hear about the heart issue. Hugs to you.
Raine wells I remember how much more concerned my onc was when the liver mets were discovered and how disconcerting that was. Faslodex was an easy treatment for me and I got about 9 months. I tried adding the Ibrance but my white blood count plummeted and I was still working in an elementary school so we dropped it. Hoping you get a long run on the tratment.
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BlaineJennifer, I agree with the others. The one thing I have learned in my ten years of treatment, is I have to look out for me and be my own advocate. I check the blood tests, I watch to make sure my port is clean, I make sure the right appts are made, I make sure I am on the same page as the onc. It is a lot of work, but I am worth it. I feel like I can be in some sort of control, when sometimes I am not, obviously... this is just a speed bump, you can get through this and then you will be more vigilant. Keep loving your MO.
Therese
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JFL- Yes, it is. We have only two drugs that can inhibit c-Myc, the CDK7 inhibitor and a compound called JQ1, and both are very new. The CDK7 inhibitor was shown to be very effectively kill MYC-driven tumors, whether amplified or over-expressed, in pre-clinical studies, and the drug works on both triple-negative breast cancer and ER-positive breast cancers. Interestingly, inhibiting CDK7 should also inhibit CDK4,6, so that could be another benefit, plus inhibiting CDK4.6 has been shown to make cancer cells more sensitive to immunotherapy. So perhaps a CDK7inhibitor-Faslodex-Keytruda combo trial needs to get going- why does all this stuff take so long?!
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JFL- Yes, it is. We have only two drugs that can inhibit c-Myc, the CDK7 inhibitor and a compound called JQ1, and both are very new. The CDK7 inhibitor was shown to be very effectively kill MYC-driven tumors, whether amplified or over-expressed, in pre-clinical studies, and the drug works on both triple-negative breast cancer and ER-positive breast cancers. Interestingly, inhibiting CDK7 should also inhibit CDK4,6, so that could be another benefit, plus inhibiting CDK4.6 has been shown to make cancer cells more sensitive to immunotherapy. So perhaps a CDK7inhibitor-Faslodex-Keytruda combo trial needs to get going- why does all this stuff take so long?!
But OK, it seems from the Syros website they are moving to phase 1 of a CDK7 inhibitor-Faslodex combination; if that works then they can add in immunotherapy...
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Thanks for the info Cure-ious. I also have the MYC mutation so hoping for the future.
Mary
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MaryLark- apparently it's relatively common to have c-Myc over-expression or gene amplification in breast cancers,especially triple negative and basal-like or BRCA mutant but also sometimes in ER-positive cancers, because the activated estrogen receptor turns up c-Myc gene expression.
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The CDK7 inhibitor is called SY-1365:
Syros scientists analyzed the anti-tumor activity of SY-1365 across a panel of more than 400 cancer cell lines, including 19 TNBC cell lines and 21 ER-positive, PR-positive and HER2-positive cells lines. They then grouped the cell lines according to sensitivity to SY-1365 and looked for markers of response using Syros' gene control platform to analyze regulatory regions of the genome. The data showed:
- SY-1365 induced cell death in 15 out of the 19 TNBC cell lines and 17 of the 21 ER-positive, PR-positive and HER2-positive cells lines.
- Sensitivity to SY-1365 in these breast cancer cell lines was associated with a super-enhancer, a highly specialized regulatory region of the genome, that drives increased expression of the known oncogene MYC.
NCT03134638 at www.clinicaltrials.gov. Syros expects to present initial clinical data from this study in 2018.0 -
That all sounds good Cure-ious. Nice got to do more reading about any of that. I am so medically clueless!!!! Most if it is Greek to me
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ann1999- I agree on opinions bc I’m sitting at mayo going fornmy third option. My first two fills all the books and say standard of care is to, blah blah. I just want to slap them bc standard isn’t always the best option for everyone.
Have you been to Rochester Mayo? Loving this dr here so far. He has a personality and jokes some which takes the edge off. You can see his wheels turning and saying I’m thinking about trying this or that. I am hoping for a trial.
Always do your own research and not go just by what the dr tells you.
Sometimes insurance is the big issue with different opinions and that stinks too.
Good luck
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Skitzblitz- Hi - yes I went to Rochester for my second opinion and have been there ever since. My previous MO was a “standard of care” bone-head who my gut told me I should fire 2 years before I became metastatic. Mayo seems to be somewhat “standard of care” too but there are definitely brain cells churning and so far the care/service is very good which gives me confidence that everything that can be done is being done - with of course my own advocacy.
I will probably get another opinion because I want creative great minds to look at my case and u never know what they may be able to contribute. Yes insurance is a problem....grrr.
Hope your visit goes great! I’m on my way now to Rochester for my Havalen treatment!
Cure- ious- thanks for the info on the CDK7
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Skitzblitz- The difference with you and Ann, as with most of us on this board, is that you are desparately looking to research your way out of this mess, to make the most informed decision so that hopefully you don't at least get put on a drug that you are unlikely to respond to- and you show it just by saying you want to join a trial!! Most people aren't interested, only a few percentage of cancer patients ever do a trial, they want to plug along with standard of care, and for all practical purposes, historically, the outcome following standard of care was probably not much worse than for those in trials, but now there are so many new drugs and new approaches that bring in immunotherapy, its easy to hope that some wonderful results might be found in a trial. Some of those women who tried the trial combining Ibrance with AIs are still reaping the benefits years later!
I wish we could join any trial we wanted through our own MO, just say sign me up, I want to try the drug combo you are testing, and monitor/scan me as often as you like, rather than making us go to some other location and transfer records to a different doctor just to participate in the trial. And they would accrue the number of patients they need so much faster- they could interview us by Skype, really don't get why trials are set up the way they are.
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