How are people with liver mets doing?
Comments
-
Thanks Husband11. They were going to start me on Eliquis (sp) but I am having the port surgery next Thursday and I know you have to stop all thinners before surgery. But if I do have to take them after my surgery, I will request that one!!!
0 -
Lynne Wendy Grannax the wait is always hard, scan to scan. Kaayborg thanks so much, Kay u got me laughing there. So true.
Bluebird how great for you, these radiosotopes so what are they? How different is it from Y90?
Rpoole what a piece of s@%t, you did gr8. So you are still doing Y90 but with s/o else? You've got these 2 mets for a while right? It did not budge. The only thing is we were told they might not use more than once the Y90, maybe maybe twice. I am sorry but that's what I was told. I spoke to another young woman that has so many tumors in the liver, and big Cancer Center does not want to use Y90. They keep insisting she takes care of it systemic. What gives??
Zar is this the same type of therapy that NIH was doing? What's the plan for your biopsy?
Thank you guys, tomorrow we start early.
I was looking for more info on Y90, and i came across this, thought it's apropo to all.
0 -
Robin, I had DVT in my subclavian vein and some brachial veins due to BC. I feel for you. It felt like someone cinched a rubber band around the top of my arm and my arm was a swollen, reddish-blue sausage that was about to explode. I had a triage nurse in the ER tell me nothing was wrong with me, despite coming in with a doctor's note from an urgent care clinic saying I had DVT and needed to be seen immediately, without delay. She made me wait forever. The radiologist who finally did the ultrasound said I was lucky I came in when I did because my subclavian was almost fully occluded. Go to the ER if you need to do so. DVT cannot wait. The biggest risk is it can break off and go to the lungs.
0 -
Mom, good luck tomorrow with Dani's procedure. I found the informationsheet below from U of Washington, one of top 5 cancer centers in country, which is very informative.
http://www.uwmedicine.org/health-library/Pages/yttrium-90-radiotherapy.aspx
0 -
Thanks for posting the video mom, good information. I want to look into this type of treatment though my MO doesn’t recommend it for my 4 liver tumors. She says too many to use to treat but if they get larger, more tumors and painful she would support for pain.
Good luck tomorrow.
0 -
JFL, Yes the arm is so painful. I am going to MO's office tomorrow and will get her opinion. But thanks for the input. I do feel like a walking time bomb!
Momall, I actually have 3 liver tumors (typo before) they shrunk on Carbo but the chemo was too hard on my bone marrow. I have already met with another IR at Sarah Cannon who comes highly recommended. He has agreed to to Y90 or SIRT. I just need to get over my fear. And my MO is not on board with the Y90. I can see why they would not want you to do Y90 more than once because the risk goes up. I am also considering a trial with Oliparib and a Wee1 inhibitor. Thanks for posting the video. Good luck tomorrow. Praying!
0 -
I just love the dancing through cancer that was on the video mom posted. That gal was just hilarious!!
0 -
Robin! That dr needs a good wake up call. How would he like to be told "you don't have 2 years". I adore you and am rooting for you. What happened to the abemaciclib plan? I get my scans on 11/6. Fingers crossed. My liver met is micro, so no biopsy or Y90 yet. Momatt -sending love to you and Dani for next steps. Z- I'm working this weekend and then collapsing. Want to hear all about Japanese immunotherapy.
(()) Claire yelling at the classless Dr.
0 -
OMG Robin unbelievable the callous behavior of some "providers". I am so sorry you were put through that crap. My Onc last year when discovered I had ascites told me it was "the beginning the end". No easing into the convo, no offer of hope, just blurted it out. I thought my Dh was going to pass out.....
lalady, I thought Xeloda was next on your list? What changed your mind?
Good wishes for Dani Mom!
0 -
Thanks for posting this information. I have the ESR mutation too. Starting a clinical trial with Erubilin and possibly Pembro to get Liver Mets under control after the mutation and period off of systemic therapy. We had discussed Faslodex at an earlier visit, and I want to remember to bring it up again.
0 -
I am scheduled for a liver biopsy next week and would appreciate any information on what to expect. Feedback from any of your experience would be helpful. I like to hope for the best but prepare for the worst.
Thanks!
Jeenee
0 -
I had scans yesterday. My cancer in my lymph nodes has grown as well as the two tumors in my liver. Also, two more appeared in my liver. I was dx in July with TNBC with mets and started Taxol in September aftern having AC in May, June & July. So the Taxol didn't work. What has worked for y'all the longest? I meet with my onc at noon today to discuss the next treatment. Thanks for your input.
0 -
Robin, after your surgery, I think you should stay with Eliquis. It is the best of the anticoagulants, tho also the most expensive. I've taken warfarin for years because it's less expensive, but without the price difference I'd jump to Eliquis in a second.
0 -
Kaylynne that's a real quick trial on the Taxol do you think they have given it enough time to work? I know triple negative is really tough to target I wonder sometimes if they rush stuff. What about Capecitabine a friend of mine is triple negative and she has been on it for over a year and it's holding all her tumoursin check. Good luck today whatever they decide I hope the next treatment blasts this cancer.😊
0 -
The concern is that all of them grew and I ended up with two more tumors so I'm fairly certain, as is my doctor, that it isn't working. We decided to do the PET so we wouldn't waste time on an ineffective drug. I will ask about the Capecitabine. Thanks!
0 -
Robin -
So proud of you for getting what you need through the BS. Just keep smilin' at these a*holes and keep your eye on the prize ... the treatment plan your research and your gut tell you need. I am so impressed with your research and your instincts. The Y90/Olparib plan is a great plan. Never heard of Wee1. I'll be googling later when I have time. I am following you closely as I feel that I am about a year behind you.
Wendy - Is the dog getting you out for walks? I am sending Dog telepathic messages to be very assertive about going out for a walk. And how are you feeling?
>Z<
0 -
Hi Z so I'm about 90 percent sure the problem now was due to progression and not SE which is a bummer , but I have to add that I'm starting to feel better pressure in my abdomin is becoming less. This for me is really a repeat of April and it may sound crazy but I really believe things started going down hill for me again once I started the letrozole. I know my mind says no can't be but my gut tells me something different. My onc will be phoning me sometime today to let me know the results of my last blood work so that will reveal a bit more. Snowed here this morning so the walk was extra fun😊 Vancouver is so not used to snow no car today
0 -
Kaylynne I'm in agreement with your onc. Time to switch. Tnbc grows fast and responds fast when you're on the right treatment.
Jeenee...we may treatment buddies. I will be adding pembro to eribulin off trial in a couple weeks.
0 -
jeenee. Liver BX can be done so many different ways. Z had hers done with local only. She seemed to do great w that. I know it depends on where met is and how accessible it is to IR. Many are done guided by CT and patients are given conscious sedation. My liver BX is not the norm. I had to be put completely out and intubated because my oxygen levels wouldn't stay high enough (because of mets in lungs). Do you know which way they plan to do yours? The recovery isn't too long, it's usually a day procedure.
0 -
Wendy - So we're dealing with progression. Do you think the emergency chemo reduced the abdomen pressure already? If so how very awesome. What treatments are you considering after the course of crisis chemo is over? I am sure you are waiting for the scan. If they find something, then a biopsy and genetic testing would be something to push for.
If you don't trust letrozol do not do it. Period. I feel the same way about Afinitor even though many women have do well on it. I am not doing it. We are all different and there is a lot of guessing going on in these treatment decisions. We need to trust our guts.
Do keep moving as best you can with the pain. That dog may save your life so head his advice and go for a walk. We have body functions that simply require a certain basic level of activity. I think you will figure this out so you need to stay strong.
Jeene - My Bx's have been easy. Local anesthesia and some drug that makes me not think about the procedures. Depends where it is and your condition
Robin - very concerned about these clots. It's very common in cancer patients and we all have to be very careful. We're supposed to hydrate with sports drinks, which I am still trying to figure out how to do without getting a lot of sugar. Any thoughts on how to do that are very welcome.
Apparently airplane travel can cause clotting so my cancer consultant has me on anti-clotting medication when I fly.
Here is a website that tries to get people more clot aware. www.stoptheclot.org. We need to remind each other all the time to learn about this and manage it. It's very dangerous.
Thanks for everyone asking how I am doing. I am getting over jet lag and trying to get DD and myself back into our normal routine. DD plays two instruments and swims and homeschools so life is intense. As I slip back into this routine, I am thinking … did we really do this?
Last night I got my first normal night sleep in five days, since my last night in Japan near the airport. Yay.
Otherwise, I am amazed at how well I feel. I continue to take letrozol even though it "failed" because the truth is it didn't really fail. The cancer evolved around it but all 8-12 of my original metastatic sites resolved completely under letrozol and Ibrance.
I stopped taking Ibrance two weeks before treatment because the immunosuppression interferes with the treatment I got. There is a strong argument that CDK 4/6 inhibitors are synergistic with immunotherapy but my doctor felt that in the end the immunosuppressive SE's are more of a problem than any potential benefit from the synergy.
So until I figure out what to do next I am on letrozol alone. My energy levels are higher than when I was also taking Ibrance. I still have the muscle pain from letrozol but I am surprised how much Ibrance was contributing to my general crappy feeling these last 18 months. Ibrance was tougher than I understood.
My CEA leveled off after a couple weeks of light chemo prior to immunotherapy. Knowing that helps me, a lot, soldier through the diagnostic process on a drug that "failed" while figure out a long term strategy. I should get my TM's from last Friday in Japan today or early next week so that is another data point. Hoping for a good one or I will freak out. If that happens feel free to remind me of all the times that I posted about tumor flares.
Whatever happens, I need to see my scan results next week and get a few more diagnostics to figure out what to do next. The biopsy in September did not get any immunohistochemistry so we will redo it if the new scan shows a reasonable target to biopsy.
If I see that things have resolved somewhat over the past 6 weeks I will be leaning towards a very light touch … something like abemaciclib alone. If things are stable or progressing in the scan I will be doing something more aggressive. The obvious choice is faslodex and abemaclib but at this point I don't know if I am ER+.
In sum, scan on Monday will be the first step towards a medium term plan.
Mom - I believe that Dani got her Y90 today. Thinking of you both as I always do, every day. Today I hope you are both home and resting and everything went well. I believe you are now have three active grandchildren in your custody? I guess you are not resting.
So we soldier on to our next doctor's appointment.
Z
0 -
Just got the dreaded call from my oncologist, so it's back. Tumour markers went from 40 to 140 liver enzymes are also elevated again so all that chemo gave me a month. I feel like such a failure I was exercising like a madman and taking tons of supplements and doing vitamin c IVs and it was all for naught.
What's next..more chemo I will never understand this disease. It gives me a break I feel almost normal then it bounces back
0 -
Wendy,
I’m so sorry to hear this. I pray your MO can give a good next plan. Hugs!
0 -
Wendy -
I did everything too. I did not make it to the mean time to progression for Ibrance/letrozol. And yet I will continue to do everything. We don't know what will work or what is in fact working because the outcomes are so varied (are we talking QOL or mean time to progression or overall survival) and the diagnostics re unclear... Just another punch in the gut from this crappy disease. No breaks apparently.
>Z<
0 -
Wendy, I am sorry for the bad news you received, but you are NOT a failure, not by any measure. Who knows how much worse things might be if you hadn't taken those extra steps - the exercise, the supplements, and the vitamin C IVs. Your body probably held off much worse progression as a result of all that you did. Cancer is an ugly, powerful, unpredictable disease. You, my friend, are a beautiful, noble woman who has withstood as much as you possibly could using all means available to you. You are not done yet. We who have come to know you during the past 2 1/2 years realize that you are amazing. We will all continue to be here for you, supporting you, ready for youwhen you need us.
Hugs and prayers, sweet lady, from Lynne
0 -
Beautifully said, Lynne. Yes, Wendy, your strength will carry you!
0 -
Wendy...so sorry. Never welcome news but it is all of ours to hear from time to time unfortunately. It's the name of this stupid game. Many prayers that you find the peace that comes in a new treatment plan that works and soon. I do hate the uncertainty of waiting. 50sgirl said it all and so I echo a third time.
Z...glad you are finding rest at home again. Still so amazed by your knowledge and adventurous spirit.
Mom...hoping all went well with Dani today.
0 -
I'm currently in the hospital again so it seems eribulin and I still have some things to work out. First it was tumor fevers that caused the infection prevention to- do. Now it's neutropenic fever. Not worried about anything. I have cold symptoms which had me feeling quite miserable but feeling a bit better tonight. Neulasta should have neutrophils up soon and we expect blood cultures to be negative. Just waiting it out.
0 -
Kaayborg - I hate to hear that you are in the hospital but if tumor fevers are what I think they are ... no infection but a response to treatment ... then maybe a good thing? Do you have any thoughts on what tumor fever means?
>Z<
0 -
[[[[[Wendy]]]]]
Lifting a glass to all that Lynne said.
I feel like a phoenix sometimes. In the last seven years, I have come within hours of dying in the hospital from this disease more than once, and yet here I am. Granted, I don't exactly feel like doing the cha-cha, but if you saw me in the grocery store you would not even guess that I am sick. Point is, things can turn against us so suddenly, but then they can turn in the other direction just as suddenly.
So hang on, Wendy-- all of you. You are still here. Anything could happen.
0 -
Lulubee, I remember one of your close calls, and that you texted your onc on the sly when the hospital doctors were not ordering the right stuff for you. What do you think has gotten you through these narrow escapes? How does one be a phoenix?
Artist, how did your appointment go? You changed oncs because the first one was neglecting you, so it is terrible to hear that the new one has now been doing that. Maybe you are too nice! I agree with Babs that you should insist on seeing the onc and not the PA. Your "case" is complicated. Do always bring DH with you. Regarding the conversation about seeing a fellow -- for me, same as Marylark, sometimes a resident or some kind of trainee comes in to see me first, but my onc always comes in to join us eventually. I figure they are using me to help train people, which is fine with me as long as I see my onc as well. I repeat everything and add the specific questions I have saved for my onc. My onc's NP is fantastic and I contact her if I need a prescription or authorization, or advice on dealing with side effects. But for treatment decisions, only my onc.
Liwi, I totally agree that nature is good medicine. And you know the wonderful thing about the pelican? His bill can hold more than his belican. (According to poet Ogden Nash.)
Cure-ious, I appreciate your clear discussion of treatment options, resistance, etc. and look forward to hearing your thoughts. Zarovka, are you able to quickly list which kinds of immunotherapies are good early on vs. later when there are many mutations?
Momall, is neratinib recommended for Dani because of a Her2 mutation? This is different from Her2 overexpression aka Her2 positive. A Her2 mutation can be a driver and neratinib can work where herceptin does not. My liquid biopsy showed a Her2 mutation, not a typical one, but onc says neratinib is in my future.
Robin and Bluebird, good for you both seeking better docs. Sheesh you shouldn't have to deal with that.Z, Faslodex typically has so few side effects, it might be a reasonable choice for you right now even with uncertain ER. Of course the shots are no fun.
Wendy, Lynne said it so well. You are doing amazingly under very difficult conditions. You rock.
Kaayborg, you are in the hospital but sound so nonchalant about it! You rock, too.
0
