How are people with liver mets doing?
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Leee, it is a lack of education. Use of local treatments in BC is relatively newer on a wide-based scale and most MOs, even good MOs at good institutions, are not in the know about it as it relates to BC. Most only know that local treatments are used in colon mets and liver cancer. My MO rejected the idea of Y90 for 6 months. However, during that time, he did research and some additional breast cancer information had been published, and he changed his opinion. After seeing the results of my first Y90, he is now he is a huge proponent. He ended up supporting my first Y90 and is supportive of me now going back to have a second Y90, if needed. I would suggest trying to float the idea of local therapies well in advance of when you need them for this very reason. I started inquiring about Y90 about 9 months before I actually had the procedure, when I was on a treatment that was working and I was stable.
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For triple-negative cancers, there is an interesting report at SABCS 2019 that these cancers depend on two driver proteins, p63 and p73. There is much interest in using CDK7 inhibitors against these cancers, and finding a way to overcome resistance developing to those drugs, so understanding the pathway better may help to find additional targeted therapies
https://www.abstractsonline.com/pp8/#!/7946/presentation/1147
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I'm surprised to hear that many oncologists feel that way about local treatment, my MO has always preferred to treat locally when possible so I thought that was the norm. If you have mets in multiple locations and systemic treatment is holding everything stable except one spot that acts up, seems like it just makes sense to treat locally when possible.
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Leee,
I don't know the answer to your question, but I suspect that at the time that most experienced oncologists (and aren't we always looking for the most experienced ones) trained at a time when that only feasible treatment for BC was systemic. They didn't want to mess around with anything else. Also, in the not so distant past, oncologists weren't dealing with so many advanced cancer patients. I know that when I was diagnosed this past May with mets to my liver, because of BCO, I knew about various liver mets IR treatments. At my biopsy (didn't even have a definitive diagnosis yet) I asked the IR doing the biopsy if he would consider doing Y90 on me. His first question to me? Have you talked to your oncologist? when I told him who that was and that no I hadn't, he honestly told me that she rarely refers patients to IR, but that he would talk with me further after the biopsy "if she agreed." Well, that got my back up immediately. In fact, when the results did come out, she was VERY opposed to any IR treatment and told me that in 30 years of practice, she had never referred anyone for IR treatment. Fast forward -- new oncologist. The new one wasn't particularly keen on IR treatment either, but agreed to put my case to the hospital tumor board and voila - the IR on that panel said he thought he would be able to do something, so the second onc agreed.
I have heard, though, here on BCO, that some oncologists are very supportive of localized treatments, so I guess there are some out there who are supportive.
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So I am slightly worried here...I think I am feeling (and have for a few weeks now) a small marble like thing in my chest...the right side (where my breast cancer had been) I had a double mastectomy so there is basically now just skin on bones you can feel everything... I am afraid its a lymph node??? When I had my BMX they could not even find my lymph nodes not even the tracer could because of scar tissue...they say thats not uncommon for someone that had prior radiation there...but I am worried now that its cancer in that?
I get a full CT bone scan and CT of chest and abdomen on December 4th (she wants scans since starting the Xeloda) would CT show lymph nodes?
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Nicole, you've gone through a lot of medical interventions lately and I'm sure your adrenals are exhausted from the constant pain and stress. Concentrate on healing now by being as peaceful and relaxed as possible.
That’s what I would do If I were in your shoes. Stressing won't help and you have scans scheduled already. They will be able to shed light on the situation...I'm willing to guess that whatever you're detecting could as easily disappear by tomorrow morning...that's what happens to my suspicious spots.
I just posted a recent scary experience on the bone pain thread that resolved itself three days later with the use of anti inflammatories. I'm so relieved I'm no longer in pain...whatever is going on under my right breast will have to wait till my pet scan results, I'm not going to lose any sleep over it. After all cancer is our new normal...and to expect otherwise is bound to lead to heart wrenching disappointment sooner or later.
Wishing you only the best
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Thanks Frisky..I know I should just expect things might pop up...especially since I have been off all cancer meds for over a month now.... I will wait and see.
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worrying won't help you Nicole....one day at the time...I feel you're going to be just fine!
You're a very courageous and intelligent woman, but ultimately we all have to remember that after we do our best we have to let it go...and just enjoy every moment we have..fretting and going in and out of hospitals is very stressful. Unfortunately, we all know that there's progression even while undergoing treatments, I wish it was different....
this is a fight that only a handful manage to win, usually in spite of the TXs that have failed and continue to fail millions of well-meaning geniustype doctors throughout the world...
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My Y90 went well yesterday. IR said he was able to treat all the big ones and little ones in my right lobe. Good news. JFL I did not have the referred pain in right shoulder blade and shoulder like I did in the first one. He told my family I probably wouldn’t. I think it’s because they can’t use as much yitrium the second time. But I have not actually asked him that question. So, today was a much easier day. I didn’t start having much discomfort until a couple of hours ago. It’s just right upper ( liver area). Not sharp but not going away. I think very normal for the day after. No nausea. So I’m pleasantly surprised. And fatigue hit about the same time or is it from steroids wearing off? Who knows. Fatigue is normal after y90. He gave me me an RX for steroids but I’m reluctant to take them.
So far, so good
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Grannax,
So happy that this first procedure seems to have gone smoothly. Rest up!
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Glad to hear it Grannax!
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Grannax I’m so happy to hear your good news, I've been thinking about you....I hope you continue to feel better....congratulations
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Nicolerod, those marbley areas could be fat necrosis. I got them after my bilateral mastectomy. My plastic surgeon would ultrasound the concerned areas in her office. I did have one near my implant that could not be seen on US, so surgeon removed it. Fat necrosis.
So it could be that. But it is always good to bring these concerns to your MO so it can be easily addressed and ease your worry.
S
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Grannax, glad the Y90 went smoothly. Hang in there. I refuse steroids as a general rule but did take them after Y90. I had some hard core energy and was going strong all day long that first week with the prednisone. My IR said the steroids help prevent gastritis that is common after Y90 but that he also gives it to patients to assist with the fatigue the first week.
Nicole, sorry to hear about your latest concern with the lump. One of the hardest things about this disease is that it is hard to know the difference between symptoms of common ailments and cancer. I do have a small pea-sized lump after between my skin and my post-mastectomy implant. I had it scanned when I first noticed it and it appears to be benign. My SO believes it may be scar tissue that formed around a stitch or something else. I hope it turns out to be nothing but you are doing the right thing getting a scan as that is the only way to know.
How long have you been on Xeloda? December 4 seems pretty soon to scan. TTR (time to response) can take up to 12 weeks in some chemos.
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Hi Nicole, CT scans have Bern very good at showing up lymph nodes in my case, and if the doctors were concerned they just did a fine needle biopsy, no big deal... I understand that fright you get when something unexpected pops up, all the best xx
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Awww thanks ladies! I already feel better now that you made me aware of some other things that it could be.
JFL she is getting base (starting point) scans...because if something is new now before I start (and we don't scan now, and then we scan in 3 months and its there we wont know if it was there before the chemo or not...plus there are now 3 scan places involved and each shows different things. My original scans were done in NY back May - August, then the PET and MRI in Richmond Va, now here in N. VA.
Since my ovaries came out Monday and healing has been not so easy I was suppose to start Xeloda this coming Monday...I asked my MO if I could start the following Monday Dec 2nd so i can at least have Thanksgiving with my family and feel good and she agreed so I have not started the X yet.
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Thanks ladies. My liver complained for a few hours yesterday but I'm not feeling it this morning. JFL That's what my IR said, take steroids for fatigue. But, it causes me not to be able to sleep so it's hard to decide. I did wake up every hour last night even without steroids. UGH.
So far, so good today.💞
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Grannax - thank you for sharing your update and so glad to hear that it's going pretty smoothly so far!
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Grannax2, So glad to hear your Y90 was successful. I had my scans this morning and asked my oncologist if I could have Y90 as my liver mets have grown and multipled. He said my insurance wouldn't pay for it as I have 10-12 new mets on my bones and they consider that progression. If I only had liver mets, then I could have it done. Bummer. He did say that if we could get the bone mets stable, we could try to slip it through or maybe use laser. Foundation One sent my results back and my liver biopsy shows the mutation of PIK3CA so Piqray is the next drug. BRCA1 is not expressed now, which he thought was weird. Anyhow, thanks for your PM and I am very happy for you! Nicole, the break would be great so the holiday will be more enjoyable. Prayers for every one. Lisa
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Nicole, the baseline scan makes perfect sense. I must have misread a prior post!
Grannax, steroids keep me up and turn me into a different person, as they are a major upper for me. It is a bit scary - which is why I do not like to take them - but I do get a lot done when taking them. I hope your liver continues to do well in the healing process.
Hello, MedicLisa, my friend. Were you BRCA 1 positive previously? If so, that is interesting. I didn't know that type of mutation went away. Yours must be "somatic" (acquired cell mutation) as opposed to germline (inherited/in your genes all along)? I am hoping more people on BCO will post about Piqray experiences. There is a thread which has started to pick up but it is not super active just yet. Piqray may be in my future as well at some point.
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Hi everyone. Curious if anyone has experience starting ibrance/faslodex with fast growing liver mets? considering it as a next treatment option, but hesitant given the rate of progression.
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Dear mediclisa,
Not to doubt your MO, but you might want to directly consult with an interventional radiologist or even with your insurance company to find out about whether or not a local liver treatment would be covered under your insurance. I am finding out that MOs don't necessarily know exactly what one's insurance will cover. Sometimes they just don't want to deal with the insurance companies to justify particular treatments. Just a thought. I know it's a pain, but you might want to pursue.
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Lisa I 2nd what Bev said get a consult with an IR! Get 2 if you need to.
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traveling to UCSF Tuesday for an echo and to see trial doctor. Hoping my heart passes so I will be accepted. Sounds like I’ll be on TDZm1 snd Neratinib if I’m accepted. Win win for me as TDZm1 helped my liver.
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I had fast growing liver mets at my 3 month scan while I was on IL. That's when my MO sent me to the IR in 2017. I was able to stay on IL for my lung and mediastinal lymph node because the y90 worked so well on my liver mets. My MO probably would not have known about y90 but my IR has a representative who went to MO offices around the Dallas metroplex to tell them what my IR could do for her patients.
I don't know why an insurance company would not pay, regardless of active bone Mets. Also, I'm sure there's a systemic med you could take while doing the y90. Maybe even Pikquay. Although, I know nothing about that TX. I stayed on IL when I had mine. Some chemos are not good to take while doing y90. That's why I'm only on Faslodex during this round of y90s. Medicare pays 100% for my y90 and hospital. Of course I have a supplement policy, too. I also have active mets in my lung and chest. Other areas of mets are not a reason to deny coverage.
I think some MOs are just more concerned about systematic TX. Understandably so, it's their specialty. Some don't know that both can be done simultaneously. And a few still treat us as if we're going to die anyway so what's the point to do local TX. It's all about education, if the IR they use is not a specialist in y90, they may not be aware of other IR s expertise.💞
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Hi JFL - So I did some digging on the BRCA1 in my family. My mom had 6 siblings - 6/7 had the BRCA1 marker. Out of 23 kids - 13 have the BRCA1 and only 1 grandchild has been tested and she is also positive. My 3 kids refused to be tested at this time...I have sisters in place to bug them when I am gone. My one son has 3 daughters. So how my sister explained it to me (radiologist) is that I still have the BRCA1 marker, but my cancer is no longer expressing the BRCA1 marker. Not sure how common that is. My oncologist wants me to have additional testing as I'm sure the process has changed since 2006.
BevJen, NicoleRod and Grannax2 - you are right. I need to explore this further. I love my oncologist (12 years) but he doesn't always know best. He hates Mayo Clinic and I have gotten a second consult there before. I also have a consultant in Alabama (where I did a trial study on Abrance in 2015) and he is also very knowledgeable.
JFL - The speciality pharmacist called me about Piqray ($15,000) and told me that it is not to be used as a single agent as my oncologist was also going to combine with CMF to see how it works. According to the study, it needs to be used in conjunction with Fulvestrant. So he was going to contact him as he wants the med started on Tuesday. He had some interesting information on the drug and I will post on the Piqray site.
Thank you all for information and help - I will be more diligent on this site. We are all in this together - take care....Lisa
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BevJen , thanks for your response regarding the referral to the IR. I think I will pursue with my MO next month, when she sees me. I don't want the liver mets to be so big that I am not eligible for Y-90 at all. As of now in 3 months, 3 lesions have become 5 on Taxol. Hoping this CMF would work and reduce the tumors in liver and bones.
mediclisa , I see in your signature that you are on CMF + Aromasin since Sept 2019 - How did you fare on this? I am on CMF and having extreme fatigue and nausea. This is only my 2nd cylcle!
Did you move on to Piqray due to progression on CMF or you could't tolerate this any more? I will be stalking you on Piqray thread, since that my be my next treatment.
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JFL. My IR says he has had good results doing y90 simultaneously with some chemotherapy. He mentioned capecitabine and X were OK. But said Gemzar and Avastin are not. I just found this out yesterday. I panicked when I saw on the SIRTEX website that capacitance was contraindicated even after a y90. It is supposed to be my next chemo. So I called him. He said that was untrue and should be removed from that website.
I wanted to mention this to you because I read that Gemzar might be next for you. I know you are in the middle of making important decisions. Let us know what you find out. Knowledge IS power.💞
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Thanks Grannax! I did start Gemzar a few days ago. I couldn’t “afford” to be off treatment for a few months to do Y90. I (and Babs) did Y90 with Doxil for my first round. That was fine. One good thing about Doxil is it is only administered every 28 days and I timed my Y90s in between. Gemzar is 2 weeks on, 1 week off. I am going to see how I feel on Gemzar and how it is working and then decide. I have felt a lot of fatigue on days 2 and 3 but it seems to be improving on day 4. However, I developed excruciating referred shoulder pain on day 2. I have never felt anything like this. I was crying yesterday because it hurt so bad. Slightly better today. No longer excruciating but now “very painful”. I am hoping this is due to some transient inflammatory response from the medicine working rather than pain from liver mets expanding. I could not tolerate this long-term. Hurts every time I breathe
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Hi All -
Grannax - Congratulations on your so-far successful second Y90. You are WonderWoman !!!!!
I had 3 scans Fri and meet with Dr Angel tomorrow. If no progression...stay the course with Abraxane and start cycle 5 tomorrow. If progression...decide next steps.
Even though I suspect progression, I am in my self-protective "numb" mode so doing fine. My kitties provide great love and distraction for me. This is Cleocatra, basking in the warmth of the fireplace. She is my Survivor Inspiration Rescue who belonged to a cat hoarder and survived a car accident and major surgery in Feb 2019. The life she lives now is very different from her previous burdensome existence...she inspires me to keep going...
Gumdoctor
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