How are people with liver mets doing?
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Moth,
I'm so sorry to hear about your progression. Good luck with trodelvy. I hope this is the drug for you.
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lff, yeah I was thinking of that but she can't add anything to the treatment without stopping the current meds. The meds can't be given together. So it would only be if I could have rads and I'm pretty sure the new lung met is in an already radiated area so they won't want to radiate again. And nobody here will agree to local treatment of my liver which is full of mets.
I'm extra nervous about coming off the tecentriq because if I come off I can't get back on - it's approved as 1st line only in Canada. But I think I have to if I have 3 different areas that it's not controlling .. ugh
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Moth, I am so sorry about this news (and not remembering you were waiting for results). Damn! Trodelvy seemed to be working well for you. Hoping the next one does what it needs to! Sending a virtual hug. Pat (Sorry, edited to say I got the treatments backwards! Let’s hope Trodelvy is the ticket!)
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Moth best of luck. I had the right side liver Y90 and it’s been one of the easiest. Left will be 1/13.
Beauty this is a great bunch with lots of knowledge
Has anyone skipped a treatment due to fatigue? I know they’ll check my labs. I had carbo 12/24 and supposed to have it again 12/31 with recoup time of 2 weeks before Y90.
I’ve never had such fatigue or pain from the chemo as this last week. Of course it being the holidays there is only a skeleton crew with messages passed around.
I don’t want to be in the hole for the Y90 or flu season or Covid season or stomach bug season (that’s what’s going around now).
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Sadieservant,
Thanks for remembering! I just got my scan results back. Fast turnaround in just a few hours. I think they all want to get home early since they are not working tomorrow or Friday. The results were strangely mixed. Largest liver tumor shrank while second largest liver tumor grew. More and larger nodules in my lungs but decrease in "ground glass and consolidative opacities". Decrease in septal thickening and near complete resolution of an area of pleural effusion. I think the Eribulin is doing something but I will need a more dramatic response in my lungs as my shortness of breath has gotten really bad. Don't need supplemental oxygen yet but I struggle going uphill or up stairs. Overall, I'm relieved by the scan results.
I also underwent radiation to my 11th right rib, just finished yesterday, because it was being eroded by a nearby lung tumor. Thankfully, my brain MRI showed no changes.
So I'll be heading down to USC next Monday for the ARX-788 trial. I've never been on a Phase I trial before so I'm pretty nervous. I've also never had treatment outside of UCSF.
How are you doing? Hope you are enjoying the holidays!
Hugs, Susan
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Well, mixed as you say but overall there appears to be some positives. I’m relieved to hear that Eribulin appears to have helped. Understand the nerves with a phase 1 trial but you have been a trailblazer since the beginning. 😊
I’m doing well, waiting for treatment to start. I was able to review my CT scan results today and one thing my MO didn’t mention (probably since the only way to deal with it is to treat the underlying problem) is, apparently, I have hydronephrosis in my right kidney - moderate to severe. Hmmm… something else brewing. They couldn’t see a blockage but I think that would require an MRI. Hopefully Eribulin will take care of whatever it is that’s going on there as well.
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Sadiesservant,
So sorry to hear that you have hydronephrosis. Always scary when a new organ is involved. Like you said, let's hope the Eribulin kicks back whatever is going on there.
Sending love and energy your way!
Hugs, Susan
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moth - I'm really sorry to hear about the progression. I hope the next treatment will result in calming your nerves about coming off tecentriq. I'll be thinking of you.
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Dear Moth, uhh, so sorry... I was contemplating, if you are off atezolizumab, pembrolizumab is still there, m? Leronlimab is also in the pipeline. It is always so scary to change meds - unknown is the scariest:/
I wanted also to take a chance and to congratulate all of you with the up-coming New Year! Let's hope that 2022 with so many "2"s will be better and easier for all of us than 2021 was. Lot's of hugs,
Saulius
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Moth I am sorry about progression I am sure you will do well on Trodelvy
Susan mixed results...I hope the Eribulin will step up for you.
My husband and I are sick with COVID.... I was in hosptial last night to get antibodies
Has anyone dealt with high Alk Phos on treatment, but all other liver enzymes are good? When I first started the Trodelvy my Alk was in the 200s after the first week (infusion) it went to the 300's. now after the 2nd infusion and my week off it is in the 500's....I have a message into my MO ..but last week when I asked her about it (when I was in the 300's she said she wasn't concerned bc all the other liver numbers were good...but I mean if its just gonna keep rising isn't that bad?? Is there anything to make that go down? Just the thought of having ALREADY to fail another treatment is making me so upset....
My MO called. She is not concerned with the Alk Phos as long as the bilirubin stays low..she said the Alk Phos can go into 1000 range and still be ok.she also said that they were making covid positive patients miss chemo for 20 days!! But they now set up a new section fir those that have been positive to get chemo on a different floor than the normal infusion floor ..thank goodness.
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Grannax2..thinking of you.
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Dear Nicole, sorry to reply late - I remembered that when I "researched" neutrophil-CA15.3 rise connection (after G-CSF administration, like for example neulasta), I also stumbled upon neutrophil-ALP thing. Here it is: https://academic.oup.com/clinchem/article/51/9/1751/5629924 Was thinking, if your ALP could rise because of some WBC disbalance (trodelvy, other drugs you use, even COVID)? Saulius
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I was just informed by my MO that I will not be allowed to get trestment until 20 days after civud symptoms first started and will need a negative test (which she said can actually show positive fir months even after you are symptoms free) also the special infusion clinic they set up for covid positive patients is only for early stage patients bc they have curative intent....so basically I'm screwed no treatment for a month or more.
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Nicole, did I miss something? Did you contract COVID? I've been worrying as well about treatment delays as I am still working and need to push back at in-person meetings. So sorry to hear about your situation.
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Nicole, I hope the antibodies you got will help you test negative quickly! Hopefully you'll test neg & you just end up getting a small treatment break. Hang in there!
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Oh Nicole I am so sorry for you when I read this. You need uninterrupted treatment.
That is what I fear about Covid. I tell my family/friends that poo poo Covid that even if I would not get awful sick from it, I would have to stop treatment for a time. I am not on IV treatment, but Lynparza pills. But they lower the immune system, so I would think that my MO would say to pause them. I don't know that for sure, as I have not had Covid yet.
Also, being Stage 4, with the hospital filling up, they may limit care for us. I heard on the news something about this. (St. Louis hospitals. And I live in Southern Illinois and might be transferred there if my local hometown hospital is full). The reporter asked about limiting care to the unvaccinated first if it came to that, and the hospital rep said that they are not there yet but may have to limit care to those that have the best chance of survival. That means we MBCers are screwed if that happens. That is why I do not want a DNR in place yet. I am a Full Code for now. Give me a fighting chance.
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Actually, Candy may have hinted at something that could help you, Nicole. Maybe call your IR at Medstar and see if they are treating cancer patients the same way or if differently, see if she can pull some strings to get you treatment there instead. You may have to switch oncologists, but at least you'd get treatment. Just a thought.
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Thanks Bev but I already asked the IR once about recommending an oncologist and she said she didn't have one to recommend .
Also it's. Ot just the negative test they are mandatory making u wait 20 days from onset of symptoms.
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Nicole- I hate this for you. But is the mandatory 20-day-wait in part that your body could not handle the virus illness PLUS the strain of the chemo? That you need time to recoup from the effects of the illness? My gripe is the comment that the early stage bc patients can get treatment since they have "curable intent". Makes us seem we are expendable.
How are you feeling with Covid? Are you very sick with it?
My sister's sister-in-law had Covid (not a cancer patient) and she was awful sick--- vomiting, diarrhea, fever, chills, headache, cough, lowered oxygen level. She was at home, but was really sick for several days and was watching her oxygen level, and went out to the ER a couple of times, I guess. I hate to think of all that PLUS how we feel with cancer.
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From my oncologist: "Just heard back that you DON'T have to have a test. Apparently that is just for leukemia/lymphoma/transplant patients. So you are actually fine, but we do still have to wait the 20 days. Again - this is hot off the press and new info.
It could change but right now just 20 days with no repeat testing. Thank goodness!"
Candy....we both had fevers for about 4 days and I sometimes have a little cough now but i feel good. My husband has no cough and feels good too now. Only thing is I have no sense of taste....my husband does.
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Candy, was your relative vaccinated? I'm less afraid of being sick with the virus at this point despite my bad lung as I've had my booster. It seems that with vaccination the disease is less severe.
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Thank goodness Nicole! I can completely understand how stressful the delay in treatment is. That's my biggest worry given that my last treatment was ineffective. I've essentially been off treatment for 7 months so don't want to do anything to jeopardize chemo. So... I continue to hide in my house!
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We did not have the vaccine for those that were wondering and I don't believe we had it bad at all..I did get the antibodies but my husband didn't.
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I had covid , non vaccinated , similar to one of the colds I have had in the past.
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Sadies- The lady I was mentioning in my post that had Covid so bad was not vaccinated.
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Nicole Red- That makes me so angry about covid and your treatment. That's insane and a complete insult. As if the life of someone with stage IV isn't as important as those with early stage. That's so unfair. I'm fortunate my treatment center will still continue treatment regardless of covid or stage. I was exposed to someone with covid recently so had the potential of having it. They treated me apart from the other patients as if I had it. It turned out I was negative. I wrote most of this when I thought you had to test negative. My outrage lessened knowing that's not the case but the 20 day delay is still disappointing.
Candy - The limiting care thing is scary. We might automatically get less consideration although there are several on these boards even who have lived 10+ years.0 -
Kris...where are you treated? I am on with City of Hope right now (though I live in VA...I was diagnosed Stage 4 at COH) I am on asking about a trial they have...
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For those that don't frequent the Ibrance thread we lost a BEAUTIFUL soul today ....I am devestated. Samantha... AKA Rabbit.... I am so devestated for her husband Nathan that she loved so so dearly. We were just texting 2 days ago and now she is gone. The only comfort I have is that she went home to be with the Father.
This disease really really sucks and I am so sick and tired of it.
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That is very sad to hear.
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Nicole, so sorry to hear this. This disease really sucks!
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