How are people with liver mets doing?
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Nicole, great news about the spine met. I have found that bone mets are hard to diagnose on scans, sometimes what looks like an active met is really scarring or just something else. I also have bone mets in the hip, rib and spine which seem to be fairly stable.
To everyone-I may have done the second option MO a disservice. I was the one that pushed her for a time prognosis and she gave a very reasoned response, with the usual caveats about us all being individuals etx. She also said it wasn't unreasonable to think I may have 1-2 years. I think we are all different regarding what info we want and how as well. I would rather have a conservative (worst case) scenario because I have no family or caretaker and have SO MUCH to do to arrange a future for my teenaged children. Don't want to waste time when I am still on my feet, only to go into rapid decline and not be able to get things done. The rapid growth of my tumor on doxil (liver tumors now 5cm and 11 cm, after being a total of 9 cm 3 months ago) put things in some perspective. Now I am hopeful for the Lynparza (tumor markers at 770, down from 1300 a month ago!) but it is causing grade 3 anemia. 3 units of blood yesterday so back on my feet : )
Again, all of your responses and experiences are SOOOO helpful! Really help me keep things in perspective.
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arolsson, good to see tumors markers halved and you are still functioning. Hope you will be able to function even better and do even more stuff, mostly pleasurable as well !
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arlosson- glad tumor markers are coming fien. I am a planner so understand why you want to get everything lined up now.
Sorry for the anemia. Glad the 3 units helped. I understand the anemia as I’ve been battling that for awhile now. I’ve had 8 units in just over a month.
Take care of yourself.
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NicoleRod – Enhertu is an antibody-drug conjugate (ADC) that targets HER2 protein, delivering a strong chemo load to cells expressing HER2. It was approved in Jan 2019 for HER2+ breast cancer and has high response rates and lasting responses. Earlier trials showed that Enhertu may also work against cancers with low levels of HER2 expression (IHC 1+ or 2+ but FSH negative). It is thought to have a "bystander effect" whereby the chemo leaks out and damages nearby cells in the tumor that do not have HER2 expression.
JFL – I've been on DESTINY04 since April 30th. I have stability in some locations and regression in others. Another HER2 low patient has been on Enhertu for over 2 years and is NED! The main side effect is nausea, which I manage with anti-nausea premeds and meds at home following treatment. Pneumonitis is a rare, but serious complication. DESTINY04 is randomized, so you have a 2 in 3 chance of getting Enhertu versus physician choice chemo. Another phase 1 Enhertu trial which has a HER2 low arm combines Enhertu with nivolumab (a checkpoint inhibitor) and is not randomized, so definitely get Enhertu. The trial number is: NCT03523572. There is a very active Enhertu facebook page here: https://www.facebook.com/groups/478640293032630
Bevjen – Thanks for the heads up on pain after microwave ablation! You helped me when I consulted with Johns Hopkins IR last November. My tumors were too small to target then. I don't know if they always use general anesthesia at Stanford or if my liver lesion is problematic. It's good to know that you had light sedation. I was scheduled to have microwave ablation this Friday, but just found out that the IR had a family emergency, so I have to reschedule for next week.
Arrolson – I was on a trial for the PARP inhibitor, Talzenna, for a year with a good response and very good quality of life. I have CHEK2 and FANCA genetic DNA repair mutations. If you have a BRACA1/2 germline or somatic mutation, then you may have an even better response! If I remember correctly Talzenna causes less anemia than Olaparib, but worse other side effects. If anemia causes problems, you could ask about Talzenna.
Best! Theresa
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That's really encouraging news, Arolsson!!!
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Hi all,
Just saw the radiation doctor for the SBRT report and she seemed to think my scan report was pretty good.
She didn't see why I wouldn't stay on same meds since the growth was so small it could have been previously hidden because of scan slice size.
I will see her in 3 months after next scans to see if the "new" tiny lung lesion has grown enough to treat it with SBRT. And see how the treated lung lesion is doing since it’s only been 6 weeks It was a little early to tell.Whack-a-mole! Left feeling so encouraged.
Also she mention the untreated lung lesion needs to grow enough to get a biopsy. Then we can see about PDL-1 status and any other acquired mutations. Since my last biopsy has no tissue left to test.FYI- we discussed SBRT to the liver as a general treatment and she said she feels better with Y-90 to the liver. Something about seeing the liver clearly enough for CT guided SBRT. I guess that’s why MRI is a better scan for the liver and CT for the lung.
I am putting my clinical trial searches on hold and resting for awhile. I talk to MDACC doc on Tuesday. 🦋🙌🏻
Dee
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Dee,
I think that sounds very positive. My IR, who did my liver ablation, talked at one of our meetings about how it's difficult with CT scans with the slices, so that's consistent info. My IR DID use CT guidance, though, for my liver ablation -- so I think that may differ from institution to institution.
Sounds like a plan. Also sounds like you can relax for three more months.
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Dee, sounds like the radiation doctor knows what she is talking about and has good recommendations. I am glad you can rest with this report.
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BevJen
I believe theIR uses ct guidance and fluoroscope on y-90 following the blood vessels that have dye to get those beads right up to the tumor.
The local RO showed me her 4-D scans for the SBRT and how she had to radiate a little larger than the actual tumor due to shallow breathing. It was very cool to see the tumor go in and out of the circle.
Maybe the liver tissue is just different to map for SBRT than the lung. I didn't get in depth as to why she did not prefer SBRT to the liver.
You are probably right about different institutions. MDACC offers SBRT to the liver for ogliometastis.
Thanks intothelight.
I posted a new trial on the other thread to watch for. Now I'm hanging up my research hat for awhile. 😉Dee
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sounds positive Dee!!! Take the 3 months of breathing time and I'll be praying for positive outcomes next scans. Interested to hear on Y90
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arolsson - understand where you are coming from. Very shortly after my diagnosis I made appointments to take care of legal, financial, and other concerns. It was heart wrenching, but I had no idea how long I might have. Still not sure but now at least those things are not a worry and don't weigh on my mind. Fingers crossed for the Lynparza!!
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Dee...and Bev.... HRMMM about SBRT vs. Y90 vs. (even) TACE for liver.... this is my question. I am consulting at Hopkins with a RO next week about my tumor in liver near the colon wall about SBRT instead of TACE..... My IR seems to feel TACE is equivalent with Y90... he prefers TACE but said if I wanted Y90 he would do that... but I want to see about SBRT..I didn't realize its CT guided..but to be honest I believe my Cryoblation in liver was CT guided as well.
Do you guys have any thoughts about all 3 for me?
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Nicole,
Not much to add -- only to say that I'm guessing your cryoablation WAS CT guided bc that's what they used for me up at Hopkins. I will also say that when I had my liver biopsy, they used CT and I remember one of the IRs who were in the room saying that she could see the lesions very clearly. Soooo -- who knows?
Limited knowledge of TACE -- only that my IR originally wanted to use that rather than ablation until I talked with him some. Dee will know more about Y90 -- all I know is what I've read. And to my knowledge, SBRT is another option....
Hope others weigh in with their opinions. When is the appointment regarding the SBRT?
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Dee. That's great news. You can let your mind and body rest for a few months.💞
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I am curious about the Y90 and the SBRT treatment/procedures. This is the first time I have heard about these options. I had to google to see what everyone was talking about. I have been on Ibrance and Faslodex for almost a year now. It sounds like these procedures get quicker results and noninvasive versus being on medication indefinitely, living with multiple side effects, and killing healthy cells. Who qualifies for these procedures? Do MO's typically try medication first?
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kerng just fyi there's a thread on this board about interventional liver procedures. https://community.breastcancer.org/forum/8/topics/...
I'm in process of learning as.much as I can so we can consider options after my next scans at end of the month
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As Moth said, take a look at that thread. That's where I first learned about these procedures. MOs do not usually talk about these procedures -- you will have to bring it up. MOs are trained to handle BC with systemic procedures such as medication. Interventional radiologists are the ones who do most of these procedures, or radiation oncologists (who do SBRT).
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2 more units of blood today plus my kadcyla infusion. Wasn’t expecting the blood transfusions. It appears I have another condition that will need to me managed. Feeling a little low with the news but ok with it.
But I gotta get off these high dose steroids.
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LFF - I am not familiar. Is it the kadcyla driving the need for high dose steroids? Why the anemia/transfusions so frequently?
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It pains me to type this. Just another let down...
Just got the call from the nurse of the Neurosurgeon..the original scan was correct there is cancer in the C7 spine. I will talk with him Monday more but he is basically saying that what the RO said about leaving it alone right now is best.
All this after last night a handful of my hair fell out and my husband and I agreed it's got to be shaved tonight. Seeing that was tramatic for me. Many of you may have lost your hair with your early stage cancer...I never did...and last night...well I felt like I watching a movie ya know the ones where a wife gets cancer...and then you see her hair falling out...then you see her bald and like 6 months later she's dead. I am sorry if I am sounding negative to anyone but that is genuinely what I thought last night as I sobbed in my husbands arms..then today I let it go and thought I am a Warrior...I even played that old 80's song by Patty Smyth Warrior...and go all motivated..then I get this call about the C7 and now...I am just sobbing like a pathetic baby. I am so angry that I got hopeful...I am so sick of getting hopeful !!!!!!! I wish someone would just stop me from every being hopeful because I am ALWAYS LET DOWN!!
PS the really sad thing for me about the hair...is I just wanted to make it to our sons wedding Oct 3rd...I just wanted that. I know I am getting a wig etc...but its just NOT the same. and it really stinks it just really stinks.
Nicole
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nicole, hugs. And a quote from one of my favourites
""You set your heart too much on things, Anne," said Marilla, with a sigh. "I'm afraid there'll be a great many disappointments in store for you through life."
"Oh, Marilla, looking forward to things is half the pleasure of them," exclaimed Anne. "You mayn't get the things themselves; but nothing can prevent you from having the fun of looking forward to them. Mrs. Lynde says, 'Blessed are they who expect nothing for they shall not be disappointed.' But I think it would be worse to expect nothing than to be disappointed.""
Keep daring to dream
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moth I love Anne of Green Gables. Good quote.
Nicole. Not for all of the same reasons but I have felt despair like yours many times. In our shoes, we have to feel it,then, eventually move forward. How is different for each of us.💞
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Nicole, LFF, and everyone else,
Nanakorobi yaoki
Fall down seven times,
Stand up eight
(A Japanese proverb)
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Aaaaand, I just got knocked down again. I saw the endocrinologist, and I have adrenal insufficiency, probably caused by one or more of my various cancer or side effect drugs. My body is not producing enough cortisol. It is making me super extra fatigued and unable to exert myself just at the time when I want to enjoy this remission. It can take weeks to years to right itself. Sad face.
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Nicole and Shetland- Thinking of you both. No words to say right now.
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Not a good day for this thread at all.
SP, so sorry. Hope there is a not so difficult solution that doesn't take so long to "right."
Nicole, I feel your pain.
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Nicole, I am so sorry that you've been let down with this news. If you haven't shaved your hair yet, go shop for a wig now, so they can see how your hair looks to try and match your style and color as close as possible. I was never early stage, I'm Stage IV de novo, but did have TCHP chemo in 2015 and lost my hair. My avatar is me in my wig. I had already shaved my hair, so it took a while for them, me and my daughter to choose a close style, and while not completely accurate, it was close enough that no one realized it was a wig. They told me it's easier to match a look when one still has hair although you could just take on a completely different fun look, too! Thinking of you and reaching out with a virtual hug.
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hope and gratitude- it is unclear what is causing my hemolytic anemia. It came on after I stared the combo of kadcyla and tucatinib. Do the drugs coujd be contributing. It was thought it was a delayed transfusion reaction but I have beers dealing with this now for over a month and it’s not stopping. My labs are indicating it is not autoimmune but it is unknown at this point.,
mall we know is that I my bone marrow is making red blood cells but my immune system is destroying them faster than I sm producing them. Since I was already anemic I have no room to go dien sbd end up needing blood to get me over the hump again.More bloodwork today sbd maybe I’ll get sbd answer. If not, we will move onto new drugs to treat the hemolytic anemia as well ( IVIG or rrituxibsn(?))
it could be after 10 years of treatment I have just developed a new ailment.Thsnks for asking.
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Nicole- hugs. I took a blow but not as large as yours today as well. My hopes were dashed as well.
I am thinking of you and sending you strength. I have lost all of my hair twice. As soon as it started to fall out I shaved it too. I never did the wig thing.. just hats. Everyone around me knew I lost my hair so I didn’t pretend. Instead I git what I called super power wigs ( purple/ green/ pink) and wire those to make me and others smile. I see Halloween stored going up and it’s a great place to get done if these.
I also know people are doing awesome henna tattoos on cancer patients heads. They are beautiful. Might be snithef choice.
it is very hard to lose your hair. Many hugs.Also I sm do sorry about the updated bone cancer status. I hope it doesn’t grow any muu I re snd all you have to do is watch it.
Much love
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Hugs Nicole. I know these are disappointments for you and these disappointments are constant reminders how difficult this disease is on so many levels. There is no “fairness” in it at all. There is no “why me”? It’s so hard but try to live in the present, moment by moment. Oct 3 will come and you will be there and beautiful for your son’s wedding - hair or no hair, you are so much more than that. That day will be so much more than that. Get a wig, get a henna. Get whatever will make you feel beautiful. I have lost my hair twice due to treatments. I understand the traumatic effect of watching the hair fall. And it doesn’t get better when you watch someone shave it. It makes everything all too real. But you are still here, you’re still a warrior, you’re still going to fight this thing every day. And on top of that, you’re going to enjoy your life and not let cancer rob you of that. Keep hoping. None of us know how long we’re going to be here. For some of us it’s months, for others it’s years, and for a few it’s more than a decade. But in the end it’s not so important how long we’ve lived, but how much we’ve lived. I pray we all live well .....and long would be ok too!
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