How are people with liver mets doing?
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Trishyla-
I am very sorry, but don't know anyone out that way for her to talk to. Hoping someone else here will have advice for you. You could look through the web for interventional radiologists or centers where they have used Y90/radioembolization treatments. Most of the IRs are familiar with prostate cancer and would never have imagined it for breast cancer. Now there are a number of IRs who definitely do this for breast cancer with much success and there are a lot of data published. I found this article of a single center and results were positive for melanoma. Might be more out there. https://pubmed.ncbi.nlm.nih.gov/24638152/
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Nicole - how frustrating that your MO is away. I don't know anything about the treatments so can't comment but just imagining the uncertainty makes me sad & frustrated for you. Hope you sort it out
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Thank you for the info, HopeandGratitude. I'll pass it along to my friend.
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NicoleRod - I don't have an opinion. I hope new treatments go well. I would like to know more about Ibrance just putting the cancer to sleep, and not killing it. I get frustrated, because after 2 rounds of BC and now a third, I do question how well BC treatment work. Ibrance/Arimidex seems to be working for me, now. Tumor shrunk from 2.5 cm Sept 2019 to 7 mm April 2020. PET in Sept 2019 showed no metastasis. Hoping August CT shows more shrinkage. Just putting it to sleep............ Maybe that is why my oncologist said the drugs would probably be for life, even if scans no longer show a tumor. I started Ibrance Sept 2019 on 125 mg. One missed dose during that time. Taking my last 125 mg, next box is 100mg. Oncologist said that time has shown there is no real difference in effectiveness of 125mg vs 100 mg. I hope she is right. Blood counts consistently low since starting Ibrance, but not so low that I have been taken off of it. Fatigue is the big SE I notice. Occasional mouth sores, salt water gargling helps keep at bay.
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Trish, Here are a couple leads for you.
I see that Kc54321 wrote: “My Y90 procedures were done at City of Hope in Duarte CA and I received excellent care. I'm currently a Kaiser patient but did receive an approved referral (Kaiser/Medicare) to have the treatment at City of Hope.“
And ledascout from Berkeley mentioned talking to a Kaiser IR about Y90. So maybe if you PM her, you can find out who that was, then ask them where they send people in the LA area.
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Nicolerod
Does your MO have a PA or NP that could talk to you? My PA will contact my MO with questions (even when he is on vacation) to get quick answers.
OR Can you get into a colleague if your MO is offline totally?You have good reason to want some clear direction. you have been on a targeted/hormonal therapy and 2 chemos and want to make your next treatment the best choice for you.
Prayers for direction and peace of mind.
Dee
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Awww Thanks for the reply and idea's Dee. My MO's nurse told me she was going to forward my message to the MO so that if she signs in she will see it. I am fairly positive any colleague that is filling in for her would not make a complete change in my treatment plan (aside from me having a bad reaction medically) just bc I want to consider trying Hormone therapy ...that "technically" already failed... Ya know what I mean? I mean...if I were the on call doctor I certainly wouldn't do it.
My husband is NOT in agreement with me...he feels that we've talked about endocrine therapy already with her (which, yes we have) and that this is the option she feels is best right now and that since she mentioned re-visiting that in the future that I should just stick with the plan.
Right now I am scared...bc I have been having headaches the past 2 days and I am NOT a headache person...I am concerned about my C7 because its also that area of my neck hurting and pain goes upwards then I have a headache. Anyway...*sigh* I am just mentally not feeling great either.
Thanks again Dee
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TrishyLA,
My dear friend is an ER doctor with Kaiser. Would you like me to reach out to her for you/your friend? Otherwise, at City of Hope, May Lin Tao is an incredible RO and one of the smartest women I have ever met.
Let me know if I can help. sbaaronson@gmail.com
Best,
Stacey
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Shetland, you are a love. Thank you for the great info. Funny enough, City of Hope is where I get my care. I will pass the info to her. My heart breaks for her; she's 32 and facing an aggressive stage IV Melanoma. Cancer sucks, no matter what kind.
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Stacey. Thank you as well. I love this place. Such incredible people. I'll talk to my friend, and email you if she has questions. Thank you, again.
Trish
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Nicole, these decisions are so hard! Of course we all need vacation but there needs to be a plan while she is gone. I see that you have 2 choices
1. ask to speak to the doctor "covering" her work while she's gone
2. wait until she gets back. It's only a week. Unless you have an extremely agressive cancer of course. Otherwise, take a chemo vacation and get yourself strong for the next step, whatever it is. It's always your choice in the end. Good Luck! /arolsson (Amy)
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Thanks Arolsson.
. Once again my doctor has shown me how "in-this" with me, she really is... She wrote this to me:Hi Nicole,
When looking back, you were on the ibrance,letrozole, faslodex combo from May to Oct 2019 (I don't have the specific dates) and that did include the dose reductions you mentioned. I don't have the specific number of days that you were off of it. I know that your foundation medicine report said that you should respond, but just remember those are not perfect tests. There are patients that are put on trials for medications found on Foundation Medicine that progress within 2 months - so just because it looks like you should respond does not mean you will. I am more concerned that you didn't respond to the very heavy anti-estrogen therapy including letrozole and faslodex that the anti-estrogen route may not be the best idea. So I would still favor using chemotherapy especially because there is progression in the bones and the liver as well. I think it is a gamble to just use anti-estrogen therapy.
I am away with my family this week so my schedule is very up in the air, but I will do my best to call you tomorrow to talk through things, I just won't have a ton of time.
I think it's pretty great that she even offered to call on (what I believe) is the only time off she has taken in a year since I have been a patient. Anyway...my husband and I discussed and we are going to stick with the plan. 2 Things I feel. 1. I have a gut feeling this chemo won't do the trick (and my gut feelings are not usually wrong) and 2. I am thinking I may have some fear in me about this next step. This bothers me because Fear is NOT real! It only exists in our thoughts of the future, of things that do not at present and may not EVER exist. Danger is very real..but Fear is a choice! Where there is God, there is no fear! So that means I am not trusting enough
and I need to remedy that. Tomorrow is the day. My hope is that you will all help me get through this. I have never lost my hair either and this is a real possibility...just sucks...because our son's wedding is coming
I SO wanted to look like ME for that. The ME before Stage 4. I am going to stop here I don't want to keep complaining. Love you all! Nicole
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Nicole- Praying for you. You have a strong faith, I wish I had as much as you. I fear too. Maybe that is wrong to do, but I do. Hugging you now.
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Hi Nicole. You are fortunate your MO emailed you on her vacation. That shows caring and dedication. I took a month off between my anti-estrogen treatment and my now oral chemo. I have no idea if I progressed much but the little vacation between was good for me. I am now on chemo but it is oral--Xeloda. I am doing ok so far but may need a slight dosage reduction. When is your son's wedding? So far I still have the amount of hair I had when on Ibrance, after 6 weeks of chemo meds, so you may be ok. Just a thought. I don't think it is wrong to fear as long as you don't let it guide you. The trick is to have faith to lead you to wait in God's presence. King David had fear and he called out to God wailing for an answer, and God heard his cry and turned his wailing into joy. He hears yours too.
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Nicolerod, I sense your panic. I am so hopeful this new chemo will get you to stable so you can feel comfortable exploring other options, like targeted txs..
I am surprised that AI and Fulvestrant did not work . Did your genetic tumor amplifications do that to you? Have you have had the inherited genetic panel done to check for additional treatment options? Do you suspect any meds/supplements that might be interfering with current treatments? It is so odd that you cannot get more time with each tx.
Is it time to get a second opinion at a major research center to make sure all options are explored? Your MO might also welcome additional input. She sounds like an amazing MO and cares deeply for you.
AND we care about you, too.
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JFL..you okay?
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Thanks Intothelight and Sandi.
Sandi... what is this ' Did your genetic tumor amplifications do that to you? Have you have had the inherited genetic panel done to check for additional treatment options?" ???
We are not going to do a new biopsy and use Tempus until /If the newest liver tumor grows right now it was too small to get a biopsy from .
I don't think any supplements are interfering only taking VitD3 Magnesium, Probiotic....and just started LDN.
I started at a big NCI hospital Columbia. To be honest my MO offered to help me get in right away if I chose to have a 2nd opinion..but to be honest...I don't think they are going to suggest anything different....maybe I will do that in the future but I am not feeling that I should right now.
Into the light... Thank you for reminding me of David He had such a heart for God.
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Hi Nicolerod. I remember you had FGFR1 amplification from a previous F1. I guess none of us with this mutation can say for sure if we could/could not benefit from antihormonals. I plan AA when Xeloda fails.
In 2016, my blood was submitted to evaluate for inherited (nontumor) genetic mutations. I had none. Sometimes I wonder if I should resubmit in case additional inherited genes have been identified. My sister has stage 3 uterine carcinosarcoma, my two brothers have been treated for prostate cancer, one of which has mets to bone. My niece had breast cancer DCIS, the stage 2. But no connecting genes identified..not yet.
Hang on to your faith..it sounds like it gives you great comfort.
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Sandi,
I had genetic testing done using blood samples in 2016, as part of a study that my then MO was doing. My family also has a ton of cancer, going back to my paternal grandmother who died of what they thought was brain cancer but could have been BC metastasis; an aunt who died in her 30s from unknown type of cancer; another aunt who died in her 60s from lung cancer; another aunt who had breast cancer in her 70s; my father who had prostate cancer; and my brother who also died of cancer. I've also had melanoma, and so has my daughter, who is in her early 30s. You would think that there's something there, wouldn't you? Nope. No identified genetic mutations. I'm with you -- there was nothing there in 2016, but at some point in the future they will find something. Supposedly as part of that study, my blood sample & report were also sent to City of Hope and they are supposed to contact me if something shows up. Not holding my breath, but pretty sure there's something linking all of this. It's not all environmental -- my grandmother died in 1922 when my father was 5, and my one aunt died in her 30s from cancer.
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BevJen. Glad that I am not the only one who feels there are yet more inherited mutated genes out there.
Although I listed family cancers targeting reproductive organs, I did not include my mom, lung -mets to brain (nonsmoker), my dad, metastatic melanoma.
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Yay, my Hgb - which has been low and requiring RBC transfusions for months - is not only stabilizing, it actually went up over a week (during which I had chemo!l) from 95 to 105. My MO always said she blamed the liver mets & impaired liver function for the Hgb problems so this is an excellent sign.
Next week we will see how the albumin is. It's been low since Feb but bumped up a bit last week. If that too holds steady or improves, it will be another sign of liver healing.
Also, I feel very hippy mentioning this but, since I read a couple months ago that radishes and lemons are good for liver health, I've been eating 1 bunch radishes a week, and my primary beverage is water with a big mouth-puckering splash of lemon juice.
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Hey ladies... so my MO just called from her vacation with her family. She made me cry. *I need to Edit I forgot to add in something*
First She said how are you? I started to cry and said ;..I think I am scared...scared because I just can't get anything to work and now I am starting with the "real" chemos...and I am afraid there will be no going back once we go down this road" ...she then said "I understand this..I do have some patients like you that can get anything to work for a long ride it's so difficult and I want something to work for you so much...and I do believe we will have that happen. Then she said:
She wanted to just see how I was and make sure I am ok with going to chemo tomorrow. She explained again about the Anti-hormonals and why she doesn't feel comfortable trying them right now with the amount of progression I just had. She was so sweet and kind. I asked her that if this chemo fails and we go to Abraxane next...can we add Tecentriq (immunotherapy that was FDA Approved for TNBC) to it, since I will then have failed 5 lines of treatment in a year. She said "you have the PDL1 gene right?" I said "yes"...she said "I don't see any reason why we shouldn't be able to get that approved, since they are approving it for ER+ patients that like you are seemingly responding like TNBC by not responding to any of the ER+ treatments, I think this is a good plan and I am on board with you"...then she said "Nicole, please if you ever feel like you want a 2nd opinion please do not ever feel bad to tell me...I will help you get an appointment where ever you choose to go, I want you to know that it would not ever hurt my feelings or make me mad with you."... I said "I know that...that's one of the things we love so much about you. I told you that first day we met you, you spent almost 3 hours with us, I told you that day that I felt that you were truly going to try and save my life, and we STILLfeel that way. Thank you so much for taking time away from your family to call me and talk with me you are the best and I am so grateful that you are my oncologist". She said "Thats means so much to me thank you".
So I am VERY VERY happy that I may get Tecentriq next with Abraxane. We will see what happens.
Nicole
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Nicole, your post made me cry. What a great response!
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Nicole, your onc reminds me a lot of mine — smart, caring, dedicated, informed, communicative, team player. I’m so glad for you. If she ever feels uncertain about next steps, she will consult more experts, I am sure of it. You are in good hands. I’m sure those words of appreciation from you did mean so much to her.
Bev and Sandi, I agree. There is some faulty gene that has not been identified yet. In my case, I was only tested for BRCA in 2012. Eventually I was tested more broadly and there is a Lynch gene mutation, traditionally associated with colon cancer and some others, with more and more evidence that it is also associated with breast cancer and maybe ILC in particular. It is not yet on the breast cancer panels. Do consult your cancer geneticist every so often to see what more has been learned, and re-test.
Well, Moth, You have a peace symbol in your avatar so it’s about time we heard something hippy. Fantastic news about your hemoglobin, both that the problem is resolving and that it points to liver healing. All cruciferae are very good for us, and that includes radishes. I like them, but they get so hot (spicy) in the summer! I also have heard about lemon juice. My latest find is a delicious bottled drink of cold-pressed watermelon and lemon juice. Watermelon is a good source of potassium and I have to keep mine up as I manage drug-induced diarrhea. Therefore, I can buy as many as I want!
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Nicole, your conversation with your onc made me cry, too. I love her and don't even know her! I think you are in very good hands and I'm sure your words of appreciation did mean so much to her. Just want you to know I'm pulling for you and holding you in my heart. Keep the faith; you have options!
So happy, Moth, to hear your good news! I get so tired of all the boring water I'm drinking. Great idea about lemon. I've heard it's helpful, too, but always forget it.
SP, watermelon and lemon drink sounds delicious. Thanks for info on watermelon having potassium; I didn't realize that. I need to get more in my diet cuz my potassium is always low even though I take a supplement.
Thinking of you all always.
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AWWWW thank you Shetland and Bliss!!!
Bliss keep on holding me I need ya!!
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Here ya go, Bliss — the list from my fridge. My drug neratinib causes diarrhea, which causes low potassium, and potassium supplements give me diarrhea...so you see why I had to figure this out!
SELECTED HIGH-POTASSIUM FOODS
Potatoes
Sweet potatoes
Beets
Spinach, Swiss chard
Mushrooms
Tomatoes
Brussels sprouts, Broccoli
Zucchini
Winter squash
Coconut water
Oranges
Cantaloupe, Honeydew, Watermelon
Mangoes
Kiwi Fruit
Pears
Raisins
White, black, pinto beans
Salmon
Turkey, dark meat
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great list Shetland
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Thanks, LFF. Can’t help it, you know. When I was talking to my onc about the potassium conundrum, she said, “I’m sure you have a list.” Why yes I do.
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For those inquiring minds who want to know -- I attended the Cancer Research Institute's patient program on immunotherapy last year. It was excellent. Now, of course, they are doing programming through electronic means. I just watched an excellent webinar that's about an hour long featuring one of the scientists from the Cancer Research Institute, and two cancer researchers from the Broad Institute in Boston -- one a medical researcher and one a medical researcher/medical oncologist. The program is about an hour long, but it's chock full of information distinguishing between genetic, or germline testing, and genomic testing. It goes into not only tumor biopsies, but also blood, or liquid biopsies, and what each of those types of testing shows, what it's used for, whether it's reliable, and how all of that does and should affect our treatment decisions. Also, the speakers talked about how our MOs are and should be using all of this info in our treatment.
It is really well done, and though it's a bit long, I found the information to be very good and useful. If you'd like to watch it, here's the link:
https://www.cancerresearch.org/events/webinars/gen...
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