I just got back my PET/CT results from yesterday. Bad! I have never had so much progression. Little spots, some new, some growing from last time, mostly in thoracic and lung area. Apparently, ribociclib (Kisqali) + exemestane didn't work at all. That is the last of the CDK4/6 inhibitors and ER inhibitors for me.
I haven't talked to my oncologist yet. (Appointment is for next week!) My cancer is indolent. I haven't had any consequences from it. My tumors are small. The problem is that I am on my 5th line of Rx in five years. I have talked to my oncologist about resistance (I have been NEAD twice, so some things have worked, then just stopped working), and she says it is always from mutation -- but I don't have any actionable mutations. I tried to show her research from Dana Farber about other causes of resistance but she said it was not "standard of care" and wouldn't look.
I always said I would go to DF if this happened. I looked at their virtual second opinions and it requires plunking down $2,400 to get started and it says Medicare doesn't cover it. I had a second opinion at MSK before, and it was covered. This seems very impersonal. The sample second opinion doesn't look like what I want.
When I have brought this up before, I recall people saying that I should call instead, that there is another way this works that is better.
Can anyone who has done this give me some advice about how to pursue this? I guess I could also go back to MSK for a second opinion, since they already have my info and I can go in person, but it appears to me that DF has more to offer someone in my situation.
I suppose I should see what my onc says first? I am ER+, PR-, HER2 low. She has said before that the next treatment would be oral chemo, but the last time I brought it up, she said there are other options. I think she was thinking of the HER2 low treatment. She didn't want to talk about it until the results came in.
Perhaps I need a new liquid biopsy to see if anything has changed? I haven't had the ESR1 mutation, but that could change.
Thanks,
Chris
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TammyCross
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Thank you for the quick response and the good news!
What were you on before? I had good results with fulvestrant + Ibrance for 2 years and full response; then an oral SERD for 1 year and full response; then not great, just stable with Verzenio + Arimidex; then nothing with Kisqali + exemestane -- but minimal side effects.
I think Enhertu is one thing onc is contemplating (or I am!).
I have the Pik3ca mutation so she’s considering Truqap. For now I’m being put on Kisquali / lextrozole …
I was on Ibrance for 12 months, Piqray for 16, Xeloda for 2 months (didn’t do anything) then Enhertu for 10.5 months. So bummed that stoped working as my tumor markers were in normal range !
So Kisquali / lextrozole and then Truqap. After that may come Trodelvy.
I found Kisqali easy, too. Just a little fatigue, not severe. The letrozole I couldn't tolerate. Made my hips hurt so badly. I switched to arimidex. It caused some joint pain and stiffness, but not so bad. But others do not have that problem with either.
Just a few cycles then scan to see if it was working. I was on reduced dose (400 mg) because of prolonged QT. (You have to have ekg to go on Kisqali, and to stay on it.)
Turns out I am going on Xeloda! Hope it works for me. Hope Kisqali works for you! It is supposed to be better than Ibrance.
You are only on your 4th line of treatment -- let me take back "only." I am going on my fifth. After that, perhaps Enhertu, but I would love to get 2 years from Xeloda. My oncologist says that is possible. Other patients of hers have gotten two years from it. But we are unique, each of us, and so far....I have not gotten the max from anything.
My onc told me Xeloda is easier than Enhertu. Interesting it was not bad for you.
Over 70 percent do not lose their hair. Join the Facebook group for Enhertu. Of those that did shed, it started growing back after a few infusions. I had 14 infusions and ZERO hair loss and my tumor markers were in the normal range. My only side effect was mild constipation.
Sorry to hear this. This is difficult news which makes it all the more difficult to plan the next steps. You are able to pursue all three options at once. While I have not had to face this yet, it looks as though Dana Farber has financial counselors who might be able to assist. Call both the 2nd opinion line for advice and the financial counselors. You can’t be the first person on Medicare to face this.
“ A Financial Counselor can help you sort through the details and steps needed to make your financial arrangements go smoothly. Our Financial Counselors can be reached at DFCIAccessFIO@dfci.harvard.edu or 617-582-9820.”
If there is a particular study you were interested in, is it possible to make an appointment with the study team directly? Could this be covered under Medicare since it is a study eligibility visit and not a second opinion? Would your oncologist help you enroll in the study by reaching out to the study doctor directly?
You are able to continue to move forward with your regular oncology appointment to hear her out while also contacting MSK.
I have learned that half the cancer battle is the insurance and other administrivia. 😫 Hopefully others on Medicare will have direct experience advice.
Thanks. Someone else saw this and said the same -- as far as reaching out to MSK stat. The DF site said explicitly that Medicare doesn't reimburse. I am waiting to hear from someone on this site who said they called DF and got the right oncologist for their consult, and they didn't have to pay so much.
My oncologist was always looking for studies for me. She hasn't mentioned it lately. She encouraged me to go to MSK to see if they had a study I could do. They didn't at the time. They had one coming up with a CDK2 inhibitor, but the timing was wrong. I was in a Zoom the other night with a woman who is in that study. She said something about bad side effects but good response. That might be a possibility, but Enhertu seems like a good bet.
AARP United Health Care. The combo of Medicare and Medigap has been incredible. I haven't paid for a thing, or not much. The problem was when I was hospitalized before cancer for a couple of days. Then there was a heft co-pay.
Having a new liquid bx is the right first step.people often have theESR1mutation after Cd/46 fails them. The drug failed you not the other way I around. Then l would listen to your onc, bring a trusted friend with you. I personally couldn't aff afford $2400 and then continue paying for everything!!! Th charges for scans alone and if you have to pay for meds!!! Wish you the best of outcomes.🪷
Chris, Sorry about the progression. I’m off to my onco this afternoon to get PET/CT results so I may be in the same boat.
Your questions triggered a good discussion. Enhertu is one of my next options but I’ve been a little worried about hair loss and lung effects. We are all so different.. so we need to shed the fear I think and at least try. It’s great to hear that Adele_Julia is doing so well with it.
About 2nd opinion. I contemplated a virtual second opinion from Dana Farber but got one from UCSF instead because I wanted to have a two- sided discussion. They handled it like “new patient” though I hear that they are setting up a DF-like 2nd opinion program as well. I like the idea of a consultation-like appt if you can do that. At UCSF they told me that I can just consult with them whenever there is progression and can stay with local onco. The good thing about that research centers can checkout if there are good trials available. They did suggest some additional alternatives for next treatment and they think you should always get a blood biopsy upon progression.
Don't have any "actionable" mutations, but I am going to ask for another liquid biopsy (my tumors are not big enough or placed well for physical biopsy), since it is quite possible I have developed ESR1 mutation.
Hi Chris- I am still on xeloda for 17 months… I have liked being on it as it is the last oral chemo option before I need to rely on IV chemo. Except for some HFS which I manage with creams and swimming vs long walks, for me it has been a good drug. It works without any fatigue and N&V or diarhea or constipation…for me… with no scary lung issues that the new drugs need to worry about. Don’t forget about the tried and true old drugs. My oncolgists philophy was that Being on xeloda for a year or two… would give the new drugs time to shake out side effect issues… know how to better handle their quirky side effects…. Since We are all going to shuffle through a lot of drugs over the course of things… so if avoiding IV chemo is appealing for a while longer, you may want to ask where does xeloda fit into your line up…My time with xeloda is coming to an end- and I am not keen to get back into that chemo chair and have chemo in my arm again after 20 years. But we do what we have to do. Good luck with your decision.
Thanks. I believe Xeloda is on my list. Or it was. But we want to avoid chemo as long possible. I am also a candidate for Enhertu, which could postpone Xeloda for 10 months, on average.
There is another wrinkle, however. I probably should put this as more than a response to you, maybe a response to myself. I looked up some of the body parts that were a mystery where I have lesions. One of them, according to what I read, is a hole between the aorta and pulmonary artery that causes excess blood in the pulmonary artery. It has to be fixed with surgery. It is usually a rare congenital condition. The radiation onc's report says I had it at my last scan and it grew. It was not in my previous scan report, however, just a few months ago. I guess different radiologists note different things, but that is kind of weird not to mention it at all. I guess this radiologist looked at my previous scan, not the report.
My oncologist and the np won't talk to me until I go for appointment on Tuesday. I speculate that the reason is that we are not going to be talking about which med next, but this more imminent threat.
I thought I would be one of the long termers, because I had a complete response to first two meds and I am healthy otherwise, still feel really good, but I got just the average time out of the first two meds, and then little (stable) or nothing from the next two. So that is not good. And now maybe this.
I DON'T have a hole between my aorta and pulmonary artery. I "just" have a rather large lymph node at that location. The window is not a hole between the arteries, but a gap. So much for Dr. Google. That was a torturous week of waiting for the oncologist to tell me I was reading the radiology report incorrectly.
I'm guessing that you haven't had a biopsy yet. I met Dr. Chris Apfel who owns SAGE Medic Corp at the SGO Conference last March. His company examines the the biopsy BEFORE it has been stained for NGS testing and can recommend the appropriate treatment. sagemedic.com/about-us/ My onc met him too. I think I'm going to try this at my next recurrence.
Doesn't mention metastatic breast cancer as one of the cancers they can recommend treatment for, but if you spoke to him about it, they must? I think it will be a hard sell with my oncologist, and it sounds like one has to have a tissue biopsy. I don't think that is an option for me, but I will ask.
Well, things have changed a lot as I saw oncologist yesterday. I am trying to figure out how to do an update.
I am going on Xeloda. So there is no urgent need for a biopsy, and I don't need to go to Dana Farber. I do have an appointment with 2nd opinion doc at MSK on June 4, when I will start the cape. My Columbia oncologist favors that -- she wants to hear if she agrees and if she has any clinical trials for me. The doc at MSK does only phase 1 trials. I want phase 2 or 3, but my Columbia doc favors phase 1.
We talked about a biopsy. She apparently wants to do a tissue biopsy, not liquid as I had two years ago, but she said none of mine can be easily accessed for a biopsy, except for one in my armpit, but it is too small and may be too deep. I would need an ultrasound to see if that would work. I don't think she is planning it right now.
So I am much calmed down. It is bad, but not as bad as I thought, and maybe Xeloda will work as it is an oral chemo, not an estrogen blocker or targeted like the CDK4/6 inhibitors.
Dana Farber is a second opinion cancer center. I would definitely call them. I’ve never seen anyone have to pay up front for their appointment at DF - they do accept Medicare.
I got a second opinion at Dana Farber just last week. I made an appointment and met with a doctor in person. For folks who can’t travel to DF, there is a remote second option. Since there’s only a written report without any meeting with a doctor, perhaps that’s why Medicare doesn’t cover it. Have you checked on Medicare coverage for an in person second opinion?
Hi Tammy, it sounds like there are several oral options that may still be available to you (like Xeloda, Orserdu, and Truqap) before you have to go to the new IV chemos (Enhertu, Trodelvy etc). Many, many good options. Both Dana Farber and MSK are very knowledgeable about about all the latest developments so it seems like either would be a great source of advice (I’ve been treated at both and found them both outstanding). Best of luck navigating the next step 💜
Sorry to hear about the progression. I would make an appointment with Dana Farber. I was referred by my oncologist to Dana Farber to see if the tumor in my liver was operable. It is inoperable. I don't know if they called this a second opinion, but it was covered by Medicare. Call Dana and ask about payment.
I did more research about the aortopulmonary "window" last night. I finally looked it up when it occurs as a result of mbc. The treatment, which works well, is surgery, but I do not meet the criteria and the prognosis is poor without it.
I wrote the oncologist and nurse practitioner again after learning this. No response. People tell me that is not good. I gather many oncs call when there is big bad news. I am disappointed. If I have to hear bad news, this doc is not the one I would like to hear it from. It took two years of seeing her monthly before she recognized me. She still calls me by a name I have asked her not to use. She is decent to me when I am happy, but if I am troubled, very cold and abrupt.
It may not be the most important thing, but certainly is very important to have an oncologist who listens to you and is willing to talk with you in any situation. I was in a similar spot and switched to a new onc because of it. It was a good move.
Medically, I’m in the same boat you are except that I do have the PIK3 CA mutation. I have hit the median efficacy for progression free survival for each drug, including Fulvestrant and piqray. My onc is now recommending Xeloda to start in a week. I was diagnosed in September 2020.
I called Dana-Farber 2nd opinion also and received the same response and cost that you did. If my supplemental plan will not pay, I may make an in person appointment at DF for all the reasons cited. I registered at Stanford Medical for a remote second opinion, advertised for $750, and the tech company who handles their Medical Records set the account up wrong from the get go, charging $2400 vs the $750 so I decided against Stanford only because the tech co, “Included Health”, couldn’t answer any process questions or correct the problem. It did not instill a high level of trust. They manage other hospitals’ 2nd opinion departments also.
I’m trying to postpone IV chemo as long as possible. Xeloda will be my first oral chemo w one line of treatment left. The recommendation made above to find research hospitals makes sense for trials. I wish you the best in finding the next best step and also finding an onc who is truly your partner throughout the whole crazy process.
I misread Stanford as Stamford, and went on a tangent in my mind. The rehab medicine doc I see (he acts like a therapist, and refers me on) said that Stamford Hospital, in Connecticut, formed some sort of alliance with Dana Farber. They kept their same docs, but they are now trained and supervised by Dana Farber oncologists. It would be really easy for me to get to Stamford, less than an hour by car or train. Hard to tell whether that is anywhere close to getting one of those great docs at DF. I don't know how to find out, either.
In the meantime, I made an appointment for a second opinion at MSK, where I have already been for a second opinion. Also, the nice nurse practitioner called because she "heard the panic" in my last email. She said we would just look at next treatments tomorrow, possibly Enhertu, or Xeloda. She said the oncologist was on vacation, as an excuse for her not responding, but also we can talk about switching docs.
Talking to her was reassuring, except she hadn't notice the bit about the aortopulmonary artery window, and didn't know anything about what it means. And that is the cause for panic.
Did you start Xeloda? I just finished one week on. The MSK 2nd opinion oncologist recommended doing 1 week on and 1 week off, instead of 2 weeks on and one week off. Someone here helpfully posted a link to a webinar on Xeloda by oncologists at UCSF. Research indicates the 7/7 schedule is as effective as the standard 14/7 but side effects are mitigated.
I have not had hand foot trouble, but the fatigue is pretty bad. Active days are followed by zombie days. Normal days have me napping for an hour in the evening.
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