Ask a metastatic breast cancer expert anything. Join the conversation by replying to this post.
Our Ask Me Anything (AMA) with Dr. Nancy Lin is starting now.
We recommend that you click the “Follow Post” button directly underneath the official post and next to the “Like” button so that you will receive notifications of what questions have been posted and what the replies are, in case your question has already been asked by another member. In order to make sure that you are seeing the most up-to-date questions and answers, you will need to continue to refresh your browser to show all of the replies.
At 2pm, at the end of the AMA, we will lock the thread, so that no more questions can be posted in the thread. If you miss the AMA, we will keep the post on the community so that you can see all of the questions and answers from the session!
Guidelines for Ask Me Anything (AMA):
1. While we always strive to provide useful, up-to-date information on ovarian cancer, the information posted in this Ask Me Anything session should not be used as a means of diagnosis or determining treatment. For diagnosis and treatment options, you are urged to consult your physician.
2. Please try to keep questions general, and not overly specific to your personal clinical situation. We want these questions and answers to provide useful information to the entire community.
3. Please try to limit your questions and responses to three sentences.
4. As always, please be respectful of other members and their questions.
Written by
SBlau
To view profiles and participate in discussions please or .
Hi. I'm delighted to be here today. I am a medical oncologist at Dana-Farber Cancer Institute, and specialize in caring for women and men with metastatic breast cancer.
i can not make this work so that i see questions/answers and can participate. next time make it easier please! thanks for doing it though. shame i can't see anything
On average, the ibrance/faslodex combination worked for about 9 months in patients who had previously received a different hormonal therapy first for their metastatic breast cancer. This will be different from patient to patient based on how well they responded to previous hormonal therapy and other clinical factors. In some patients, the treatment can work for a very long time.
thanks for the question. Keytruda is one of a number of immunotherapy drugs that is currently in clinical trials for metastatic breast cancer. Because we don't yet have results of phase 3 trials showing benefit over standard of care chemotherapy, it is not FDA approved for use in breast cancer at this time. It is generally not being used off-label (meaning outside of a clinical trial), pending results of the ongoing clinical trials, though it is something that is sometimes considered in specific situations. This is a good question to ask your doctor. The good news is that we anticipate results of at least two randomized trials probably by this summer, and if the results are positive, Keytruda or drugs like it may become part of standard of care--but we will have to see.
There are some hints based on clinical trials so far, but nothing 100% definitive. We have seen more activity in triple-negative breast cancer compared to ER-positive breast cancer. There is some thought that a marker called PDL1 or that the presence of immune cells in the tumor may be predictive of benefit, but we really don't have enough information right now to say for sure.
is there any way to get a clue about the stability of bone mets outside of getting a scan? anything behavioral etc. any symptoms to look for? where do bone mets tend to go next?
Bone mets are hard to evaluate, as you know, based on scans alone. This is a good question to pose to your doctor. The kinds of things we look at are: tumor markers, bone pain, and the appearance on scan (new spots, worsening of prior spots). One thing about the bones on a scan is that the scan will typically remain abnormal long-term, even if a cancer is responding, because when the bones heal, the bones will show up as abnormal on scans. There is not a set pattern to where bone mets tend to go next, and is why we continue to do scans on a regular basis to follow.
We don't know of a specific foods to necessarily eat more of or avoid; but in general, a well balanced healthy diet, with fruits and vegetables is a good idea. Wine in moderation is OK for most people, if their liver function is preserved. Some chemo or other treatments can cause elevation of the liver function tests and your doctor may ask you to limit the amount of wine you drink over a week, but for the majority of patients, some wine is fine. Ask your doctor if you have questions.
Do you suggest using a prophylactic heart medication for congestive heart failure as well as a high blood pressure medication for borderline high, blood pressure, for a patient who has been on Herceptin for 10 years? An LVEF that was normally around 60-64 is now 55. Patient feels out of breath on the slightest provocation of climbing 12 or more steps and walking uphill. Thank you.
This is a great question, but there is a limit to how much medical advice I can give through a forum like this. It would be good to discuss a cardiology referral with your oncologist. We do like to keep blood pressure reasonably well controlled in patients on Herceptin.
do you have any studies to refer us to on drinking wine/liquor. are there any that are not based on self reported data? my dr tend to say 4 glasses a week and not distinguish between liquors. but i'm not sure what science this is based on. what about the wine/liquor is supposed to spur tumor growth?
observational studies have suggested that at 2 drinks per day (ie 14 drink per week!) there is a small but clear increase in the risk of developing breast cancer. From a practical perspective, I personally counsel patients not to have more than 1 drink at a time, and 3-4 drinks per week seems very reasonable and unlikely to be harmful.
can you point me to any convincing studies that will help me comply with 4 glasses of wine a week? it helps to understand. is it the sugar, the estrogenic something else
The most important ones are those that have an estrogenic effect, since they can theoretically interfere with the effectiveness of letrozole. For example, "bioidentical hormones" are something you would want to avoid. Many herbal supplements are fine, and the best thing to do is to check with your doctor. There is a nice website that I use to help advise patients when they bring in supplements they would like to take, and I also work with my pharmacist to think about drug interactions if it is a compound I am not familiar with.
Dr. Lin, you are well respected in the brain mets community. Can you talk about what post radiation or post surgery MRIs will show and hoe to differentiate new tumors from other things. Specifically, what can a brain bleed indicate?
Thanks for the words of support! Brain MRIs are usually done every few months in patients with brain metastases to look for changes, new growths, or treatment effects. A brain bleed could be from many reasons including: post-op changes, trauma, worsening of cancer, treatment effect, etc. It does not necessarily mean the cancer is getting worse. Of course, when we see a brain bleed, we also ask ourselves whether there is any surgical intervention needed (if just a small amount, usually not).
When I was first diagnosed with denovo mbc, invasive lobular, E+ P+ her2neu -, some women who had a good response to hormonal treatments were using low dose estrogen after several different hormones worked and then failed. Is that still advisable for some of us? I got almost five years from Femara and now have been on Faslodex for over 9 years. I have bone mets only and have never had symptoms from those. I'm currently off Xgeva as my bones had become similar to those with osteoporosis.
Good question. There are quite a few possible hormonal regimens for patients with ER positive breast cancer. These include: femara, arimidex, aromasin, faslodex, or tamoxifen, and these can be paired with medicines such as Ibrance, Kisquali (ribociclib), or abemaciclib, or can be paired with affinitor. Low dose estrogen has also been studied with effectiveness in some patients (the study was led by Dr Matt Ellis) and we do consider this especially in patients where we think the disease is still potentially hormone responsive. Finally there are a number of exciting trials of medicines called oral SERDs that you could look into. As always, good to talk to your oncologist about what options are right for you.
sorry. good question. SERDs are medicines that cause the estrogen receptor to be broken down. Faslodex is an example of a SERD--however, as many of you know, it requires two injections and we can't practically go up on the dose any more. There are what are in a way oral versions of faslodex (not the same drug, but the same concept) which allows the drugs to be given at higher doses than we can achieve with faslodex. Right now, they are only available as part of clinical trials, but preliminary results look very interesting.
While I fully appreciate that my oncologist does not have a "crystal ball" I am kind of frustrated by not being able to get any info about prognosis, typical patterns of progression, time frames, etc. *I want statistics, not guesses.* Can you recommend any good resources? I have started to look at the SEER data but most is irrelevant (patients not similarly situated). I may eventually be able to parse it - but that's a project! I just want to make some plans but I don't even have an idea of what might happen... much less a time frame. (I was Dx's a few months ago, am young-ish (50), otherwise healthy, working full time/fully functional, with mets to liver only. ER-/PR-, HER2+) Thanks.
This is a question that comes up in the office all the time. I'm assuming you have talked to your doctor? One good question to ask is not so much "how long do I have" because it honestly is hard to give an answer to that question because the disease can behave differently from patient to patient and depending on response to treatment, etc and you are right-we really don't have a crystal ball (!)--but instead, to ask "what is the chance I will be alive in 6 months? 1 year? 2 years? 5 years? etc." I think your oncologist may find this kind of question easier to answer accurately.
There have been a plethora of studies, especially in the past year, that confirm chemotherapy spreads cancer throughout the body. The cancer either comes back quickly and aggressively, or sets up 'nests' in the body so when it is discovered years later, a person is riddled with tumors. One oncologist I see says the people who do more of the complementary holistic therapies do not have as much metastatic spread. Is there any growing caution on the part of oncologists to adjust their recommendations for this therapy, or to go toward metronomic, or IPT chemotherapy treatments?
This is a good question and when one of the recent studies was picked up by the media, it created quite a firestorm of discussion within the breast cancer community because of the anxiety it created in our patients! Bottom line, is that the studies suggesting that chemotherapy spreads cancer have been in mice, but studies in patients have DEFINITIVELY debunked this.
What are the latest and best drugs available to us Mbc patients with bone mets. I’m on arimidex and xgeva shots. Do we need to wait until the drug we’re on quits working to take one of the latest drugs? I know tumor markers aren’t reliable but what should happen when you get to the not stable area and it is doubling?
Arimidex (hormonal therapy) and Xgeva (a bone strengthening drug) would be very standard treatments. We generally continue treatment until we are convinced the treatment is not working. If only the tumor markers change, but scans are stable and you don't have increased pain, we generally don't switch treatment. However, without seeing you in person and knowing the whole story, I can't comment on questions such as whether you should also be on a "CDK4/6 inhibitor" or other adjunctive targeted medication. It would be a good question for your doctor.
Had a question about Chemo/radiation vs. surgery...if my doctor tells me he wants the recurrent tumor on my right side gone and wants chemo and radiation done and claims if u do surgery it will come back is that true? It won’t come back with chemo/radiation but will with surgery? Doesn’t sound logical but I’ll trust your opinion...as a metastatic patient I have to concern myself with upper limits of radiation and being on chemo to much as well.
Hi. I'm not sure that your doctor means that the surgery will cause the tumor to come back; my guess is that he or she means that it won't be sufficient to treatment the cancer and that chemotherapy and radiation would be a better overall strategy. Talk to your doctor; we all want our patients to understand why we are making recommendations and for them to be comfortable with them
I have spinal mets, and one in my right leg that was treated by removing the cancerous end of my femur and replacing it with some type of apparatus. My question is about severe back pain. I've had a vertebroplasty etc. on T11 and lumbar radiation. The cancer is also in my coccyx. I'm on twice a day morphine plus liquid for breakthrough pain. I can't bear to sit or stand or walk for more than a few minutes at a time. I'm wondering if my big belly could be exacerbating things but my oncologist doesn't want me to lose weight. Your thoughts would be greatly appreciated. Thank you! PS I've been Stable on Ibrance and letrozole for two years.
Sounds like you are having quite a lot of symptoms. Have you talked to your oncologist about what might be done to help with your pain? Sometimes it is also helpful to consult with a pain specialist. Hard to know online if you "big belly" is contributing though I guess it is possible. Finally, I am glad you have been stable on ibrance and letrozole for so long and hope it continues!
I am interested in the new treatment drugs coming out this month and in late spring for ER+, HER2-. Can you give more details as to what was found in trials. My understanding is that a patient must first be on Ibrance/Femera before taking these?
There are a number of interesting drugs in clinical trials for ER+ HER2- breast cancer. One are "SERDS" (see my post above for an explanation). In addition, we and others have trials looking at combining Ibrance or similar drugs with immunotherapy. And there are trials looking at other interesting targeted combinations. Definitely talk to your doctor if you are interested in trials.
How long is it recommended for a HER2 positive patient to remain on Taxol, Herceptin and Perjeta when there is no evidence of disease? Is there a reason not to continue after the recommended number of treatments? I've been on the protocol for nearly 5 years
I always hesitate to give specific advice online but I can give general thoughts. For most patients with HER2 positive metastatic breast cancer, when I treat with taxol/Herceptin/perjeta and the patient has had a good response, I continue to three drugs for 4-6 months and after that, drop the taxol, and leave people on "maintenance" treatment with just Herceptin and pertuzumab every 3 weeks. This allows people to recover from side effects of taxol and taxol can be added back later if the disease subsequently acts up again.
This remains pretty controversial. Right now, we generally don't recommend breast surgery in most patients with MBC. There was one positive and one negative randomized trial-both conducted outside of the United States-and not with all the chemo/hormonal/targeted treatments available to patients here. A randomized trial to ask this question in U.S. patients is being led by Dr. Seema Khan and we await the results.
This is an incredibly important question and there is not a one size fits all answer. I think one key is to know yourself-what makes you tick, what is helpful or not helpful for you (for example, for some patients, support groups are super helpful, and for others it just does not fit their needs). Another is to recognize that rather than trying to "always be positive", it's good to cut yourself some slack and know that it is totally natural to have a fear of recurrence or progression and thus it is about coming up with strategies to manage these feelings when they come up. I hope this is helpful advice--hard to give general advice on something so profound that people face in many different ways
-communicate what's important to you - some people value length of life more and would take many more side effects to get this; others would prefer only to take treatments with very few side effects
-communicate if you are interested in clinical trials. trials nowadays are NOT limited only to patients who have "run out of options" but are available for patients at many different points in their disease course
-communicate side effects and worries- I can't help to make things better if I don't know they are a problem to begin with
-communicate how you like to make/share decisions
-communicate how much information you want and how much detail
I have a fair amount of low-grade, chronic pain in my trunk (rib cage area just below breast and around side) from my original lumpectomy (x2). From what I have been able to gather, it is probably trunkal lymphedema &/or nerve damage. My surgical team has utterly dismissed the need to do anything about it (although my surgeon did finally acknowledge that trunkal lymphedema exists). My Onc says that is not her area (talk to surgery) and I have just been transferred to a new PCP. I previously saw physical therapy briefly. They treat arms but had no idea what to do for trunk pain besides apply pressure and maybe heat and cold. Any suggestions regarding who on my care team ought to be the best resource? Have you seen success/relief in patients following particular treatments? Thx!
by BRCA+ I assumed you mean an inherited BRCA 1 or BRCA2 gene mutation that was associated with the development of breast cancer? As you know for patients without metastatic disease, bilateral mastectomy is an option in patients with inherited BRCA1/2 mutations, since new breast cancers can occur over time. In patients with metastatic disease, we are more worried about what will happen with the mets than about new breast cancers occurring in the breasts--so most of the time, we are not recommending surgery. However, like everything, every patient is different and the circumstances are different, so this is a good thing to talk to your doctor about.
This "Ask Me Anything" with Dr.Nancy Lin is now closed. We have locked the thread, so that no more questions can be posted in the thread. However, we will keep the post on the community so that you can see all of the questions and answers.
Thank you Dr.Lin for your time and energy answering these questions! And thank you to all those who submitted questions! Still have questions? Consider starting a new post on HealthUnlocked to start a discussion among your peers.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Beautiful Trivers 
New Skin lesions-- with metastatic breast cancer
PIP PAYMENTS IN THE UK - USEFUL INFORMATION 
Living? with metastatic breast cancer of the lungs
