Tried 5 drugs in the lat year, none worked
Hi all,
My mother was first diagnosed with breast cancer in Nov 2014 (Grade II, ER+/PR+/HER2-). She did Chemotherapy (Doxorubicin + Cyclophosphamide + Paclitaxel) followed by radiation
Then years later she found a lump on her left breast Dec 2019 and had surgery to remove it, after which the Dr said she was stage 1 because the cell profile showed that the tumor was margin free. But then "accidentally" (after going to the Dr for constipation) found out she had Metastatic breast cancer March 2020 (Grade III, ER+/PR-/HER2-) (metastasis to the bones and lungs). Since then, she has tried 5 different drugs (below) and none of them have worked...
I have read that people go through periods where one drug may work for a bit but then it stops, so they try another one and it works for a bit and then stops... But it seems that for my mom none of the drugs have worked, is that common? She keeps changing them after only 2-3 months on each (every time she has a PET/CT, it always shows that the cancer has progressed). I'm curious if anyone has been in a similar situation and if you had any advice or things that have worked for you? is there always at least one drug that should work for a bit? I've done research and attended virtual conferences (eg Metastatic Breast Cancer Research Conference) and the drugs they have given her seem to be the latest in the research so not sure what else can be done. In the last appt, the Dr said she could keep trying other drugs but her body will get weaker and weaker (she has lost a lot of weight) so another option is to stop all treatments...
I'm curious to hear about other people's experiences about what they've done after all drugs seem to have not worked.. Did you start a clinical trial? Did you just stop the treatments? Did you try another drug that worked for you but is not listed below? Much appreciated!
These are all the drugs she has tried since her MBC diagnosis:
March 2020 - Abemaciclib (Verzenio) + Faslodex (Fluvestrant)
Oct 2020 - Kisqali (Ribocilib)
Jan 2021 - Abraxane (Paclitaxel) + Faslodex
March 2021 - Doxorubicin + Cyclophosphamide + Faslodex
May 2021 - Eribulin + Faslodex
Comments
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Hi lcl_90,
I am sorry to hear about your mother’s situation. Unfortunately, I can’t say that I have experienced anything similar but was struck by the over reliance on Faslodex as a treatment. The combinations seem very unusual, particularly combining Abraxane with Faslodex. It’s also quite unusual to go from Verzenio to Ribociclib which are both targeted therapies for fairly similar pathways. Most times I have seen a break between jumping from one CDK inhibitor to another.
I was also surprised to see her MO choose another taxane since she had this in her original adjuvant treatment. There are many options for chemo that are a different class that could be tried. The most obvious to me is Xeloda which has been very effective for my liver mets and has shown good success for many on this forum.
I am wondering if you might not want to seek a second opinion. I can’t tell where you live. Is this possible?
I hope you get some answers and find a treatment that works for your mom.
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Has there been any genomic testing of the tumor offered, to see if there are mutations that can be targeted? Foundation One, Guardant, etc. Then you won't be sort of blindly picking a treatment.
Is your mom's oncologist a breast cancer specialist? Is she treated at a cancer center?
If you would like a thoroughly researched guide to treatment options, there is a great book called The Insider's Guide to Metastatic Breast Cancer, available at the usual online store. Or download a PDF here:
Aug 9, 2021 Edit to post updated link:
Current link here: https://www.insidersguidembc.com/order
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@Sadiesservant Thank you for response! I believe she takes the Faslodex injections every month when she is in treatment so it's always been more supportive rather than the main drug -- I thought that was normally what's done since it's an estrogen blocker but it sounds like it's not. In terms of Verzenio vs Kisqali -- we were told that there hasn't been any research that one is better than the other or whether taking 2 vs 1 is better (with Ibrance being the third drug in that category) so she could try a different one (she had really bad side effects of diarrhea on Verzenio so she switched to see how it goes). After the first drug, we sought a second opinion from a breast cancer specialist at a major research university in Chicago and have consulted with them since. In general, they have agreed on the treatments. They did say that she should be off the Doxorubicin + Cyclosphophamide since it can damage the heart. Then they suggested Xeloda like you mentioned but Eribulin ended up being chosen because it seems to have less side effects. I read that those two are very similar (Xeloda and Eribulin) -- see "halaven-no-better-than-xeloda" article -- so not sure if she should continue with Xeloda next, we'll see what the second opinion says next week. But thanks for your feedback and best wishes on your journey as well!
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@ShetlandPony Thank you for your suggestions. That's actually something we wanted to ask during the next appointment next week - whether there should be genomic sequencing of the tumor to see if the choice of drug can be more targeted based on the mutations. I know they have given her the reports of tumor biopsies that say she has ER+/PR-/HER2- and she doesn't have the PIK3 mutation -- is that different from what you're suggesting? Also you listed a few sites (Foundation One, etc.) -- is that something that needs to be done outside of the hospital?
Her main Doctor is a medical oncologist but since October she has also been seeing a breast cancer specialist at a major research university in Chicago for second opinions.
Thank you for the link! I'm going to check it out
Best wishes on your journey as well!
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The ER, PR, and Her2 are just standard pathology report items, but PI3K would be part of a genomic test. She can get a copy of her report from whatever test checked for that one to see what else it found or did not find. It would mention any actionable mutations; that is treatable with a standard med or through a trial. It could also indicate particular treatments unlikely to work. These tests such as F1 and would be ordered at her place of treatment and sent out (though a few major cancer centers have their own test). A tissue biopsy is often preferred but there are also liquid biopsies that use a blood sample. But have her ask for her records; she may have done one already.
One nice thing about Xeloda/capecitabine is that it is easy to adjust the dose by adjusting the number of pills, which could be important if your mom is struggling physically. "Standard" dose is high and based on body size, but plenty of oncologists will adjust that. 2000 per day is standard in some places.
Thanks for the good wishes. It's not a journey, it's a minefield!
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Just wanted to throw out a couple of things from my own experiences. I have lived with metastatic disease for six years. (bones, lung, and lymph nodes). I've also had a few treatments that didn't last particularly long followed by one which has worked very well (for me, Abraxane). I definitely second the advice to keep with a breast specialist if at all possible. I had a general oncologist during my early stage cancer and switched to a specialist when I became metastatic. The difference has been significant -- not just in knowledge base, but in the specialist's overall comfort level of keeping me on treatments for longer periods of time when others with less experience may have pulled the plug on a particular treatment sooner. There was a poster on BCO who referred to it as getting every last fume from a particular treatment. This may not be relevant at all in your mom's case, but just my own experience in dealing with two difference types of oncologists.
Regarding faslodex, I started on Ibrance six years ago. When that showed signs of failing, my oncologist added faslodex to the mix. And I've continued on faslodex with every subsequent treatment, including Abraxane. We never discussed the reason, but I assumed that because most of my cancer was being held stable, there is really no way to know if the faslodex was significant in holding progression back even though I was having more cancer activity in a few areas. So my onc is handling faslodex the same as your mom's.
Regarding Xeloda, I never experienced any debilitating side effects from it. It has probably been my "favorite" drug due to lack of side effects and convenience (pill). There are two difference prescribing schedules (7 days on/7 off and 14on/7 off). So if she does have issues, dosage can be reduced and schedule changed. Everyone is so different in their response to medication. Clinical trials are certainly another option as you mentioned. You will probably have more support and access to those through the larger cancer center. And kudos to you for attending that conference! Best wishes.
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IcI_90, there are some people who have what I've seen called "wildfire" cancer which it's very difficult to get any control or stability over. There are other posters here who have struggled to get more than ~ 4months on any treatment. It is very frustrating and some cancers are just very aggressive.
Has your mom had any local treatments such as standard radiation or SBRT to the mets? If you're running low on options, that is something to consider to try to get the tumor burden down a bit.
I would also ask specifically what size of progression they're seeing. Sometimes a treatment needs a bit longer to kick in so if a progression is minor, it might be worth it to give the treatment a bit more time. It's a balancing act but like Moissy said, sometimes it comes down to knowing when to wait and really give the drug time to work..
One other thing you could consider is a re-biopsy of a recent progression. Sometimes markers get lost and with er+/pr- to start with, I'd want to know how strong that ER was. If she's very weak ER (<10%) or lost that marker and is now triple neg, that would change treatment plans.
I hope you find something to slow this thing down! It must be a horribly stressful time.
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Ah I see, thanks for the clarification. I asked for the genomic test report today, we'll see what they say. The second opinion Dr, which she saw today, did say that genomic tests are not always that helpful given that there are only a select number of drugs that would be applicable to use based on a mutation (my understanding is that there are hundreds of mutations but we don't know yet all the ones that are directly related to the cancer so there is not a drug for each mutation). He did recommend Xeloda so she's going to try that next, hoping this one work! And yes minefield would be a better adjective, stay strong!
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Thank you for sharing your experiences. Yes, we have considered switching to the larger cancer center, which the breast cancer specialist at the larger care center encouraged her to do, but it's just my mom has a personal 6-year relationship with her current oncologist. Ultimately, the drug is the same in both places I suppose, but the nurses she has known for years, etc. provide a level of comfort for her. We have, though, kept in close touch with the other second opinion doctor (the breast cancer specialist) and we seek his opinions every time there is a new result or a new drug is suggested. She visited him today actually and he recommended Xeloda so she will try that next. It's encouraging to hear that it has helped many women in this forum, hopefully 6th time is the charm! Thanks again for sharing and best wishes to you as well
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Thanks for your feedback. Yes, it sounds like my mom's cancer might be one of those very aggressive types
Right before she started her first drug in March 2020 she also had some radiation to her back bones because of pain. Then no radiation was suggested because there were too many spots. But more recently (last month), the breast cancer specialist (second opinion doctor) recommended radiating one of the tumors on her breast because it could result in an open wound. I'm not sure if the radiation actually made it worse (I think she had radiation 6 years ago on that same breast so maybe the skin was very sensitive) because it did result in an open wound (could have been radiation or could've not) that keeps leaking fluids so she is getting surgery tomorrow to address that.. Ultimately i think the radiation didn't work but the radiation oncologist said she could keep trying with a different intensity/dose. It's interesting all the different opinions that Doctors have (her current medical oncologist said no to radiation, the second opinion breast cancer specialist + radiation oncologist said she should try it, and we also got a third opinion from Anderson who said there is no point in doing it..)
In terms of re-biopsy-ing - yes! I actually found that you could re-biopsy the tumor because the profile can change over time by listening to a talk on latest news for MBC that Dr. Nancy Lin did in December for Living Beyond Breast Cancer. So we requested one and in March this year they biopsied again but it was the exact same profile as when she was first diagnosed (ER+, PR-, HER-). ER is/was 95-97% in both cases.
That's a good idea I didn't think about - asking about the size of progression rather than if there was any progression at all, I wrote it down
I see you have also gone through several treatments, I hope you're doing well these days (or as well as you can be given the circumstances), and wishing you the best!
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I edited my post above to provide an updated link to The Insider's Guide to Metastatic Breast Cancer:
Current link here: https://www.insidersguidembc.com/order
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I think it's great that your mom can see the oncologist and nurses she feels so comfortable with, while still benefiting from her second-opinion oncologists' input.
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