How are people with liver mets doing?
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So good to hear from you Zarovka! Your treatment plans sound extensive and well thought out.
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well I had my pet scan and my brain MRI today. Now I get to wait till Friday to find out the results so my scanxiety is through the roof. Has anybody else felt any discomfort after a PET scan. I'm having some abdominal pain and fatigue but that could be 10 million different things 😣
I only asked about the Pet Scan because I felt so good today going in to get it done and now I'm just exhausted and feel pretty crappy
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Bubblebear
I’m sorry about your abdominal pain and fatigue. I don’t have an answer, just think that’s total crap that you have to wait 5 days to find out. Seems like something somewhere could get optimized so people aren’t worry themselves unnecessarily
Hope you get some great news!0 -
skyfly
Unfortunately while I have been going through this craziness of cancer my oncologist has had a hell of a year also. She lost her mother to stomach cancer a few months ago and then her husband was in a terrible car accident and is now brain dead. Before that he was a cardiologist that worked at the same hospital as my father. So she has gone on a break of course, and obviously she needed to take that time. However that left all of her patients being transferred to other oncologists at Moffitt in Tampa.
I got switched to a fantastic doctor with great reviews so I don't have any complaints about that, however everybody is so booked that I couldn't get an appointment until Friday. My original appointment was Wednesday morning with my original oncologist.
In hindsight this might actually be a little better for me, my son is 6 years old and we're going trick or treating Wednesday night. I have every reason to believe that my scans will be good, but God forbid they're not I would have hated to ruin one of the holidays I know that I will get to be here for... If you know what I mean.
I'm really a positive person. I have a lot of good reasons to believe that I will survive this for quite a while. I have the estrogen receptor-positive thing going for me so hormone treatment is an option. Physically I have responded to treatment really well. I went from being a very sick individual to pretty much normal... Except for the chemo side effects. I just feel like now I'm taking each holiday, each day really, and savoring it because I never thought I would be in this position at 37 and I will take nothing else for granted.
I am looking into fasting as we speak, what I'm finding and what you guys were saying makes complete sense and I think I'm going to jump on the fasting train. And now thanks to Z I will be looking into oxygen therapy as well :-). I will definitely keep everybody updated when I get my scan results. In the meantime I'm going to do my very very best to just enjoy Halloween
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HOW LONG DID IT LAST AND HOW was it diagnoised? monitor my temp and take only 400mg og advil before bed. I am going for blood work tomorow and will discuss this tumor fever wit my onc.
Did you stop treatments wile you had it. Did u make a full recovery?
Thank you for your promt reply,
Raven
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hi raven,
I don't want you to think that this is the case with you but this is what happened with me.
I actually found my liver mets because of the tumor fever. I was spiking at night which made no sense and honestly I thought I was septic. Went into the hospital had a CT scan and they found the masses in my liver. The way they explained it to me was that the tumor releases certain compounds that caused the fever but they did not tell me if those compounds are present when the tumor is growing or shrinking or any of that. They basically said it was diagnosis of exclusion. They did all the same things with me... Blood cultures and cbc's and urine cultures and everything else. Everything was normal except the fever.
My tumor fever went away when I began treatment. I've only been on treatment for 3 months... I just had my follow-up pet scan yesterday so I don't know if my tumor is actually shrinking or what it's doing but it feels like it is.
When I did go and research the tumor fever it seems to be something that's common with liver tumors but definitely make sure that they've ruled everything else out.
Sending lots of love
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Bubblebeard - who were you transferred to at Moffitt?
Zar - good to hear from you!
I had bloodwork and my 12 DS8201 infusion yesterday. Two of my liver enzymes and my CA15 went up a bit. By that I mean 5ish points out of normal range. Bloodwork has not been real accurate for me - my CA15 was 16 when I had progression on THP - but I’m still slightly concerned about my scans in three weeks. I love this treatment and want to stay on it!!
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Z, so glad you checked in...had been worrying about you! Should have realized you were fighting with all the information you have at your disposal. I'm gone for the most part too. Just getting too hard to come in and hear all the bad news and still keep my head in a good place! Keep fighting Z, and check in occassionally!!!!
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Bad_at_usernames...
First of all you win at usernames LOL. While I was setting up my account my kid was in the bath. I looked over as I was doing the username and he had a huge bubble beard like Santa. So that's where my username came from.
Anyway, I was just transferred to a doctor Armanghani (sp. ?). I've only gotten to see her twice but she's really really nice and listens to all of my neurotic questions and takes the time to answer everything. I truly appreciated my other oncologist but she always seemed like she was in a rush whereas this doctor has a wonderful bedside Manner and from all the research I've done and what she's recommended so far she seems to be right on point. The only thing she has not brought up that I'm interested in looking into now is the y-90.
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well, I've tried and tried to sleep but it's just not happening. I go in tomorrow first thing in the morning to get the results from my pet scan and brain MRI. Seeing how the first three months of eribulin has worked. I feel like it's working, I feel much healthier than I did. But I'm terrified still, I know you guys can all relate. So I'm just sitting up watching Rick and Morty, just thought I'd pop in and say hi. I'll definitely keep you guys updated. With the good news🤞
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Keeping fingers crossed for good results today, Bubblebeard!
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Ok... I got pretty good news today
My pet scan shows that pretty much all of the places that lit up 3 months ago besides my liver are now Either gone or they are showing what they believe is stenosis. Meaning the chemotherapy has worked in those areas.
I guess they don't measure things the same way on a pet scan as they do you on a CT scan so I can't tell you exactly how much my tumor has shrunk… but I can tell you that it has shrunk "markedly" but its still there. I can say for sure that my mood has gone from scared as h*** to grateful and hopeful.
My oncologist said after reviewing my case and talking with the Tumor board they feel confident that my best bet at this point is targeted therapy and hormonal therapy. I guess it tested really really sensitive to estrogen and they seem to think that will be the best way to continue its shrinking.
Anybody in here on these zoladex/ai/Ibrance combo?
And thanks to all the ladies who have been so supportive and praying and thinking about me, you are so appreciated
Edited to add, my doctor is talking to an interventional radiologist this week about the possibility of Y90 for me. You really have to be your own advocate because she didn't bring it up, I ended up asking her and then after she thought about it for a minute she seemed to think it was a really good idea. So fingers crossed and thank you to everyone on here! I had never heard of y 90 before coming on this forum
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What great results Bubblebeard...so happy for you!
PB
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Great news so happy for you!
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Has anyone heard of an aortic murmur in relation to Mac mets? Mine was not there one month ago and one is. Confirmed by two docs. I'm sure it's related to calcium build up but why so fast? Most murmurs take years to develop. Hopefully ill know something Tuesday.
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Has anyone heard of an aortic murmur in relation to Mac mets? Mine was not there one month ago and one is. Confirmed by two docs. I'm sure it's related to calcium build up but why so fast? Most murmurs take years to develop. Hopefully ill know something Tuesday.
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Grannax- not sure if this is it or makes sense bc it didn’t to me! I looked of Mac mets and found this -
https://www.sciencedirect.com/science/article/pii/S2212137415300968
I might not be close to right on this at all I just had never heard of Mac mets. See if u think it is what they mean or did they explain it to you?
Sara
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So glad to see you Z...
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I'm sorry I led you on the wrong path.I meant to say MBC mets. Should always check/ preview post. Ugh. But thank you for reading and responding to my post. I appreciate that.
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Skitzblitz/Grannax, I found myself Googling “mac mets" too.
Grannax, I assumed it was a typo and that you likely meant BC mets or something generic like that but did find some Google results.0 -
I hope that means it doesn't exist. Ha. Just a regular, normal abnormality!!! Ill know more tomorrow.
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Wanting you to know that I had Y90 to my liver (one node) and it worked beautifully! No sites since February!
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How wonderful, kaufmanscsi!
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kaufmanscsi, that is good to know! Glad it worked so well for you. After recovery, how do you feel, overall? Do you have other mets? I'm going to ask the oncologist about this some day.
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great news Kaufman.😍
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Good evening ladies… I am supposed to be starting my hormonal and targeted therapy this Friday. I will be on Ibrance, zoladex, and an AI.
I don't know if you guys have been following along but my original oncologist is no longer working because of personal issues so I was switched to a new oncologist recently. I had been told by my previous oncologist that the zoladex needed to be in your system for 3 weeks before starting an aromatase inhibitor. This oncologist is telling me that I can start them both at the same time. anybody ever heard of this? I am pre menopausal
Is it weird that I'm afraid to go off the chemo? They were happy with how much progress I had made on the chemo in 3 months and my on colleges seems really positive about this drug combination. Any other ladies in here on that combo? Let's hear some good results stories!
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Bubblebeard...I was not on Zoladex but Lupron and started the Lupron at the same time as my AI, Arimidex. I found the Lupron harder to tolerate than the Arimidex, the instant menopause side effects were tough. Every time I got a Lupron injection, side effects were sure to follow. Eventually I got my ovaries taken out and that worked out so much better for me in terms of side effects, but that's just my experience.
I understand your fears about going off chemo. I'm hoping that my chemo is working so that someday I can go off chemo and give the anti-hormonals a try too. Good luck!
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Bubblebeard, I had my ovaries removed upon diagnosis rather than taking something to shut down my ovaries. I was told the Lupron or Zoladex would take some time to kick in, like 3-4 weeks, and I was in a very grave position at the time and couldn't afford any delay in treatment. I would have had to do chemo for that time until the Lupron or Zoladex kicked in. It isn't a problem to start it at the same time as Arimidex, it just may mean the Arimidex may take some time to ramp up to full effectiveness. In addition, my MO was trying to lower my estrogen levels quickly and was worried about high circulating estrogen levels as aromatase inhibitors stop the body from producing more estrogen but don't do anything to reduce the currently circulating estrogen. Based on that, I was prescribed both an aromatase inhibitor (Aromasin) and Faslodex, which modulates the estrogen receptors and would help with the circulating estrogen. However, I was in a unique situation being pregnant with off the charts estrogen levels at the time. You may have already posted on this - why did your doctors decide to move you off chemo? Was it always the plan that you would do a limited course of chemo to control the liver mets and then move over to hormone therapy?
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I am actually in the middle of trying to set an appointment with OB gyn at moffit to have the one ovary I have left removed. I figured the side effects from a laparoscopic surgery would be much less than that of Zoladex or anything else. Until they get that sorted out they were going to put me on the Zoladex.
The plan was always to move me over to the Ibrance and hormone therapy when the oncologist was happy with my pet scan. Clinically I was responding to the chemotherapy very very well so we planned to start the targeted therapy but had chemo on the back burner in case we were not happy with my 1st pet scan at 3 months. Well, I guess she was happy enough. Like I said in an earlier post, my scan results showed that the main tumor shrunk markedly on the chemotherapy And any other suspicious spots are gone. When I started the chemo my other oncologist made it very clear that she wanted to get me on this particular chemo initially to get things under control.
She's also looking into the y90 for me. Last appointment she was supposed to talk to an interventional radiologist and we should be discussing that again Friday to see if I'm a candidate.
After the 1st time I went through this with the stage 3 cancer and started on hormone therapy, I absolutely hated it. It was an everyday thing, that while it was not as rough as my chemo side effects, I felt like it was never going to end. I'm 37 and I had every side effect imaginable from arimidex and Zoladex together. So I'm actually not really looking forward to this but It's not chemo and my doctor seems very confident that this is the way to go
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Hi all,
Zarkova - great to hear your update. And Kaufman and Bubblebeard - nice to hear good results!
I just got back from visiting my sister for her 50th birthday. I wish we didn't live on opposite coasts so I could be there more often. I got to go to the Chan Soon-Shiong Institute for Medicine at Mariposa, which is implementing the trial she is on. While Patrick Soon-Shiong is often described as an eccentric billionaire, the upside of having a billionaire funding the research is that the center is clean, bright, new - and fully staffed with wonderful nurses, a social worker, oncologists, and PA, all of whom devoted significant time to talking to my sister about how she is feeling both physically and mentally. They eventually will have scanning and blood transfusion facilities but not quite yet. I felt relieved she is in such careful and caring hands - but I couldn't help wishing that all of you had access to this standard of care.
The oncologist also spent at least 20 minutes answering questions from me and my brother in law and let me know that the official read of her latest scans showed a 14% reduction in her liver tumor. 30% reduction is a full response. 20% growth is progression - and anything in between is considered stable. So stable! Stable is good. Her lung met disappearing is a good thing too (only 2 of 3 remain and they are small). Her next scan is in 2 months. Oh, and it turns out this trial also included SBRT to her largest lesion and she received the max radiation to her larger liver lesion.
Question for you - at what point did you talk to your young children about your diagnosis and did you get professional help for them (i.e. a therapist)? My nieces are 7 and 3 and my sister hasn't ever said anything to the older girl. But I know she knows, she's smart and observant and also has the keen ability to overhear things. It is not my decision, but my brother in law wants to tell them and my sister does not. The social worker said she has resources but my sister does not want to even look at them yet...
Wishing you all a happy Fall.
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