Hi everyone, unfortunately my wife’s tumor markers have exponentially increased over the last 3 months so after 8 months of Xeloda we will need to make a treatment change soon. We’re currently contemplating the following options:
Exemestane
This is most commonly given in conjunction with Afinitor at this stage but Affinitor showed high of a risk for pneumonitis in the trials so that’s not an option for her (she previously had a very severe case of oneuminitis and her lungs are still somewhat compromised). So we’re considering Exemestane as monotherapy. If I’m not mistaken I think I’ve seen some posts that have shown favorable results with Exemestane as monotherapy after prior progression on other endocrine therapies. Does anyone have any feedback on Exemestane as a monotherapy after prior progression on endocrine therapy (Arimidex), aromotose inhibitors (Faslodex), iBrance, Talzenna and/or Xeloda?
Enhertu
She does have an older tissue biopsy that did show HER2 - Low, but her newer pleural effusions did not this past spring. So we would need a new biopsy and she doesn’t have solid tissue tumors to target (her cancer has spread primarily to her bones and lining of her lungs). There’s concern that taking a biopsy of the lining of her lungs will trigger an inflammatory reaction and potentially reactivate her pneumonitis. So it would be difficult but not impossible to get another biopsy to see if she’s currently HER2-Low. Does anyone have any experiences with Enhertu that they can share?
Enobosarm (Phase 3 Trials)
There is a Phase 3 trial underway and still enrolling about 1.5 hours from us. We’ve already confirmed her pleural effusions have >40% Andogen Receptor (AR) expression, so she appears to be a good candidate.. The trial sponsor is not sure they can accept a cell block from a pleural effusion though, they prefer tissue samples. As noted above, that would be difficult, but not impossible. We also know nothing about the logistics of participating trials, but the Phase 1 and 2 trial results looked very promising. In this case, the trial sponsor said she would be disqualified from participating if she tried IV chemo first, so it’s now or we likely will need to take it off the table. I’m surprised I see almost no posts about Enobosarm on this site. Is anyone participating in these trials or have any thoughts in general about participating in a trial before IV chemo?
IV chemo
This would be the most conventional option at this stage but she’s frightened to opt for this. We understand for MBC patients it’s generally less aggressive than for earlier stages of breast cancer patients, but she did not tolerate IV chemo well when she was first diagnosed at Stage 3 approx. 10 years ago. Gemcitabine (no hair loss?) and Navelbine (occasional hair loss?) was mentioned for her. Has anyone been on either of these?
As always, thanks so much for any feedback.
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Half-Full
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Dear Half-Full. What a difficult decision.... I am sorry but I don't have any experience with most of the options you mentioned, other than IV chemo. I was given Abraxane (nab-paclitaxel) as second line when I had progression to my liver. I found it quite tolerable and with much milder side effects than chemo in 2006 when I was first diagnosed.
I'm not a medical professional so I'd want you to check this out, but last week I listened online to some of the presentations and discussions at the San Antonio Breast Cancer Conference. A question asked of one of the experts was whether he would recommend Enhertu if you had conflicting biopsies at different times....so as an example HER2 positive (or low I think) in one biopsy, and HER2 negative in another biopsy. He said that if a patient had ever had a biopsy with HER2+ (or low - I think!), even if it was at early stage prior to metastasis, he would recommend Enhertu. Since tumors are often heterogeneous, his thinking was that biopsies can be different. So maybe you don't need another biopsy. But as I said, I'd want to confirm this with your oncologist. Hope this helps and all the best to you both.
Dear Half-Full, as a fellow "partner in crime" (I am on this site daily, on behalf of my wife...) I am happy to share a few thoughts below in response to your questions. If you want more details, feel free to PM me. The info below is what we have learned so far, but note I am NOT a medical professional (which will probably be obvious so take any of this with a grain of salt!
Quickly, my wife was on Ibrance for almost four years, in a phase 3 trial for Amcenestrant (one of the oral SERDS) for 13 months, then tried Xeloda and Doxorubicin Liposomal (a form of the famed "red devil" but given at a much lower dosage that would have been possible to continue indefinitely, had it worked better) both of which she tolerated fine but were just not effective for her in her few months on each. So our onc at Dana Farber is recommending either Enhertu or Trodelvy to begin right after the holidays (and after more scans, another biopsy and an ultrasound over the next two weeks to help make that choice.)
Regarding Enhertu...I think our onc would favor that IF my wife is eligible based on HER2 "low" status. (She has only been HER2 "0" on past scans, which we understand wouldn't qualify under current eligibility rules.) You can Google Enhertu vs. Trodelvy as they are competing "cousins" using similar technology, just different "payloads" of chemo and different proteins being targeted to identify and seek out the cancer cells. They are both in a new class of drugs called antibody drug conjugates (ADCs) that contain multiple components that can target specific proteins in cancer cells and then deliver toxic chemicals to just those cells. Based on conversations with our onc and my research, it sounds as if Trodelvy will be more widely available and approved more broadly, but if eligible, Enhertu may be slightly preferred for both efficacy and better/less side effects--at least in my wife's case. Both have had very successful trials and are being discussed in all the major annual cancer summits, but I don't believe there has been a head-to-head comparison of the two in a formal trial. Fingers crossed that one of these may be a good choice for my wife, and hopefully for yours!
Regarding participation in trials, it was a great experience for us working with Dana Farber and Sanofi on the amcenestrant trial. As noted above, my wife was on it for about 13 months, with good results overall. The trial meant more frequent and more detailed monitoring (both a "bug" and a "feature" I guess...) and sometimes she wouldn't meet the very detailed criteria for a treatment and would have to delay for a week or two until her blood work "passed", but it was a very positive experience overall. While I believe Sanofi has pulled back on developing this particular candidate, I think oral SERDs more generally will be a positive option for many patients based on other candidates that are progressing through the approval process.
Regarding IV chemo, you might want to look at Doxorubicin Liposomal, which is a very well known and well understood drug because forms of it have been used for a long time for everything from AIDS patients to many different types of cancer patients. While the "full dose" reputation of the "red devil" is extremely harsh, at the typical MDC dosage, it appears to be quite tolerable, as it was for my wife--unfortunately, in her case, it just didn't seem to slow her progression, so our onc stopped the treatment fairly quickly. While my wife has had some GI type side effects and neutropenia with most of her lines of treatment, she has been fortunate not to have some of the nastier side effects associated with each of these past treatments. Trodelvy may cause her first major hair loss, and some of the GI side effects could be more debilitating than what she has experienced with other treatments, but we will cross that bridge when we come to it...
Hope this helps and if you have questions, feel free to respond--either PM or directly here. Apologies in advance for any errors in the above notes--as noted, I am not a doc, and don't even play one on TV...
I am in the same situation. I too have been on cap (xeloda) for the last 8 months and my tumor markers have just gone up and up. I had stated in a prior post it was 426 but it is actually 464. I am er and pr + and her2 - low. (2+) which doc said is negative, but low because apparently they did a fish test, that I do not remember. Anyhow, I have extensive bone mets and I just about fell over when I saw them on the scan results versus the prior pet scan. Had tac and gamma and they said I was stable. NOPE, false hope and it really irritates me. Pets scans are so much better and i just do not get why the fart around and waste time and let the progression continue when the tm's keep going up. This is the second time this has happened to me and I WILL not let it happen again. Pets scans not cat scans show what is really going on. So, to your question, my doc is putting me on Venorelbine. 90 mgs (3) pills on the 26th of dec and the 2nd of Jan. I will take it on the 3rd, as I am flying that day and do not want any issues in the sky. Also, I had to do the research myself as my doc said to take the nausea meds 15 min prior to the 90mgs orally on an empty stomach. I found out by researching that it should be taken with food and that by taking it with food the nausea, if you get it won't be that bad. Also with a bit of milk to line your stomach, prior to taking it. Only interation I could find was like most meds, no grapefruit. The meds should be out of your system within 40 hours and work within 2 hours of taking the oral chemo. Hope this info helps and I pray to God it helps those of us that are taking it until the miracle drug comes along. I would have done the enhertu, but it is not yet approved in europe. Blessings.
I’m on Exemestane but I came to it after Abraxane and originally I took Afinitor with the Exemestane but I suffered from an extremely rare side effect namely liver inflammation. I didn’t get the common side effect which is mouth ulcers. I took it for about ten months. I’ve been on Exemestane alone since then and I stopped Afinitor in April 2017, so 5.5 years as a monotherapy but nobody knows what’s caused the success of the Exemestane as it could be due to the six months of Abraxane or possibly the ten months of Afinitor but that seems unlikely as trials showed that the PFS was double the time Afinitor was taken but I’ve been PFS for much longer. Abraxane wasn’t especially difficult but I did lose my hair. Lots of people are using cooling caps though and it does help so they say. I just bought a wig and didn’t worry about the hair loss. It all grew back but Exemestane like many drugs causes hair loss too but it’s much different to chemotherapy hair loss as it’s slower. I shed more hair than the cat but I blame her for any dust bunnies around the house. Most people don’t notice that my hair is shedding more than usual but I did have a lot of hair to begin with. And it is continually being replaced with new hairs anyway.
As a matter of interest my first line was Letrazole and it did nothing to stop progression hence the iv chemotherapy which was successful.
Thanks so much for all the replies. All good info and very helpful. Last few days have been a bit crazy.
We just heard from the Enoboasarm trial sponsor that they will not accept a cell block from a pleural effusion. Very disappointing as we have no clear good candidate for a tissue biopsy so the Enobosarm trials is now looking very difficult to pursue.
We did confirm Enhertu remains an option but after digging further into the clinical trial it looks like 10% of the participants had ILD/pneumonitis. A lot of these drugs carry ILD/pneumonitis risk but 10% is a high number. With my wife’s prior bout of severe pneumonitis from iBrance (which only had a risk of 2% in the clinical trials if I recall correctly) this concerns us.
So that leaves Exemestane as a monotherapy, which only showed a 2 or 3 month median PFS in clinical trials, or IV chemo.
Exemestane would be much more tolerable but her onco hasn’t used it as a mono therapy and is recommending against it due to the short term marginal benefit showed in the trials. Kerry your note of being on Exemestane mono therapy for 5.5 years with no progression is astounding but it’s understandable that there’s some question as to why you’ve done so well. We’re not willing to dismiss it as an option yet, even if it just helps her get to early next year when the new oral SERD Elacestrant should hopefully be FDA approved. Not sure if taking Exemestane immediately prior to Elacestrant might diminish the efficacy of the Elacestrant since they’re both AI inhibitors. Onco says it would not, but I suspect that’s likely arguable with no specific study on this. I also wouldn’t be surprised if the pending FDA guidelines might ultimately have some dispensing restrictions with respect prior use of AIs (i.e.: no prior AI use for at least 12 months, etc.). So we could try to use Exemestane to get her through to early next year when Elacestrant comes out only your find that the Exemestane use may prevent her ability to use the Elacestrant.
So despite rapidly rising tumor markers we have no clear best options other than IV chemo which we fear will significantly affect her quality of life (it’s already poor on Xeloda). Since her scans are still relatively stable, for now we uncomfortably remain on Xeloda and continue to watch her tumor markers, and I will likely try to argue for a PET as opposed to a CT on her next scans.
Thanks so much to all and I will keep you all in my prayers.
Thank you for sharing Kerry. After nearly every chemotherapy treatment, surgery, and radiation, I have was put on Exemestane. It has been one year and I have little to no side-effects except for some hair thinning. .The photo of me with no hair above was due to other previous chemotherapy treatments. So cruel for a hair junkie like myself to be bald for so long but they saved my life at MDAnderson! I cannot say enough about the care I received there. There is a sign on one of the walls that says, "Angels Work Here." I can personally attest that is absolutely true!
Half-Full. Am the husband of a BC wife as well. Because of "chemo fog" I have been doing most of the research. I had a discussion 2 weeks ago with our 2nd opinion Onc on possible changes to the make up BC cancer (charectistics were different from two different biopsies) . I was told once treatment begins it is normal for the tumor(s) to change characteristics. But it is common to treat the profile of the characteristics of the initial biopsy. I have read, particularly with metastasis the metastasis profile can change from the original biopsy profile. From my understanding cancer feeds through a number of different pathways. The more metastasis the more pathways it uses. When 1 pathway is cut off (either though meds, diet, supplements etc) the other pathways become stronger and could cause a change in the profile. Based off what I have read many or a majority of BC are glucose dependent when initially forming but can switch to feed on fats and glutamines as the number of cells increase. I can't help with the treatments. We are currently doing radiation with the treatment directions being AI (Exemestane) and abemaciclib (Verzenio) when we start back on treatment.
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so take any of this with a grain of salt!
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