How are people with liver mets doing?
Comments
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UPDATE: I forgot to mention my MO mentioned if we do go back to try endocrine therapy she wants to maybe add in a SERD too
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LFF, I get those “may be inflammatory “ comments often. We just stay the course and keep an eye on it next scan. Same for “indeterminate” “mild” and “stable”. Keep calm and carry on. That’s my take, based on that screenshot.
Nicole, great news. I’m with the others, I don’t think we can call that growth on the small one. But what significant size change on the other two!
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I’m in my ninth month on the study and still good. They scan me every nine weeks. PET-CT shows no metabolically active cancer, and CT with contrast shows continued shrinkage.
I was offered a flu shot last week, and even though my intuition told me I should not do it on the same day as Faslodex and Herceptin, I did it anyway because it was convenient. That night I had a fever of 103.6 and violent uncontrollable shaking. I had to go to my cancer center’s urgent care and spend a few hours doing the usual infection work up. (This brought me to a total of six needle jabs for the day.) The next day I had a 101 fever, and what my mom would call “swollen glands” in my neck. I am finally back to what passes for normal. Meanwhile, tapering off the hydrocortisone and hoping my own adrenal glands are indeed coming back online.
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Nicole, I am so happy for you. I was waiting to hear back about your scans and I knew today was the day. So glad to hear about it. Praise God.
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Yes Husband thank you so much!!! You, Bevjen and a few others...are two that have been with me on this journey since day 1
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thsnks everyone
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LFF,
The first part wouldn't bother me at all. I don't have lung mets, but a number of years ago, after I had had my first recurrence and had a subsequent full hysterectomy, I got a couple of reports with that ground glass language. My BS looked at it and said -- we'll scan in 3 months. I don't think there's anything there. I think it's just from the surgery. As I recall, you've had some issues of late, and perhaps that's why she doesn't think that part is anything.
I would NOT, though, let that second part sit. I would ask my MO if I could have an MRI of my abdomen. It's much sharper, usually, on liver mets, and it might give a better picture (that was true for me.) 9mm is small, but it's almost a centimeter. It's possible that you might be able to use local treatment (microwave ablation, etc.) to blast it out of there before it goes anywhere else. Or the MRI may show that it's a nothing.
Just my suggestions. Good luck.
Edited to say: I don't have LUNG mets.
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Nicole - Yeah!!! You are not just responding to treatment, you're having a dramatic response to treatment! I wonder if you would now be a candidate for microwave ablation instead of Y90? If you really only have the 3 tumors, then microwave ablation would be a more targeted approach.
LFF - I agree with BevJen regarding your scan. I get the same type of language regarding my lungs in all my CT scans. However, the mention of a potentially new liver met seems more concerning.
Hugs and best wishes to everyone awaiting scan results!
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Nicole, great news! I hope your liver lesions continue to shrink. How are your bone Mets? Any response there?
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Theresa...I didn't even think about Microwave instead now of Y90...BEv...any thoughts??
S3K5...Yes it looks like the newest leision at C7 may have shrunk a little but I get MRI of that tomorrow...and the one in the sacrum still looks the same but she mentioned something about my bone marrow...that it was hard to see or something Bc of that...she said ITS NOT CANCER (with the marrow) its something that can happen when on chemo and not a big deal but that they didn't see a fracture there....so I am now wondering if that really bad pain I had there 2 weeks ago was die off (I will cross post in bone mets)
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Wow, that is wonderful, Nicole! Which treatment are you on now? I applaud anyone who can make progress with liver mets!!
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Nicole, HOT DIGGETY DAWG!!!!!
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Nicole,
Re microwave (or cryo) ablation versus Y90 -- you should probably raise this with your IR when you talk later this week. My sense (although I don't know for sure) is that they probably wouldn't want to do more than one ablation at a time -- but I think I remember that you cryoablated more than one before? Is that right?
Also, my IR is EXTREMELY conservative and so what I think he would do might not be the same as what your IR would do.
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LFF- I agree that the lung thing is probably nothing to worry about, but the possible new liver met is concerning. I have always had CT's and the last CT showed a possible new liver met not seen on last images. So they ordered an MRI-- more specific to the liver. When do you see MO? I cannot scroll back to your post to see if you said.
Arollison- Pocket duty for you--- too long a wait though. What is up with that?
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Nicole that is such good news!!! I am so happy for you!!!
I read my scan results this morning before my appointment with the PA. The PA last week said that they could go over the scan with me. I had a different PA this morning. I asked about going over my results and he said that he didn't know I had a scan last week. He said that he'd come see me in the infusion room after he reviewed it. After three hours the nurse went to get him out of his office. Maybe he forgot about me! He said that there were no measurements on my previous scan results in July to compare. I had to show him the measurements on the July results. He then said that he doesn't have access to the images and that he can't tell me if my liver mets are better or worse compared to July based on the written results. He then told me that I will no longer be on Taxol because I'm on a 12 week schedule and 12 weeks are up. I told him that I'm not on that schedule and even if I was that is 12 calendar weeks and I've had 9 treatments. He said it doesn't matter. I was so upset!! He has no idea if my liver mets are better or worse based on the written results. He said he wasn't scheduling me for a treatment next week but the nurse said not to worry. My MO is on vacation this week so I'll see him next Monday. I wish I could beam myself into the future!!
July CT scan before diagnosis
Multiple hepatic lesions consistent with diffuse metastatic
disease. Multiple large lesions in the right hepatic lobe amenable
for percutaneous ultrasound-guided biopsy.Upper abdomen: Please note that findings in the abdomen are dictated
under a separate accession number hypoattenuating liver masses
consistent with metastatic disease. Hepatic masses include a 2.7
lesion in the anterosuperior right hepatic lobe (image 139 axial) and
a 2.5 cm lesion in the superolateral left hepatic lobe (image 135).July PET scan:
Extensive liver metastases, which are PET avid.
No additional PET avid disease identified.
Specifically, no primary tumor is identified in either breast. No
bony metastases. No lymph node metastases are identified.Abdomen and Pelvis: The liver is largely replaced with metastatic
disease which is extremely PET avid. No associated periportal
retroperitoneal adenopathyOctober Scan:
Liver: The liver is enlarged. Numerous low-attenuation liver
metastases are seen throughout the right lobe of the liver, measuring
up to 2.7 cm. Several metastases are identified in the medial left
lobe of the liver, measuring up to 1.2 cm. A few tiny punctate
metastases. Present in the lateral segment of the left lower liver.
If a two stage liver resection is contemplated, MR may be helpful for
further evaluation.What the heck does liver resection mean!!? Surgically removing a part of my liver?! I'm so upset because I don't understand what this is telling me! I'm just starting to read my results. I couldn't bring myself to face it before. I just looked at the PET results this morning. “The liver is largely replaced with metastatic disease" doesn't sound too good! My breast doctor told me that my liver was pissed off but no one elaborated and I didn't ask! Any thoughts please let me know.
Sorry for the long rant! Thank you to everyone who gave me advise concerning reading scans.
Denise
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Bev..Thanks.... Theresa....if Microwave is CRYOBLATION....I cannot have that on my tumors now because they are to close to the colon wall which is why we couldn't cryoblate it last year.... I thought microwave ablation was more like SBRT....(Theresa I was thinking you were talking about SBRT)....
Bev, yes My IR at Hopkins did both tumors with cryoblation at the same time he basically incased them together under 1 "dome"....
KATTY...LMBO!!!
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ShetlandPony - that’s a terrible reaction to have with your flu vaccine. I had mine last week when I had Taxol. I’ll have to remember that next year if I’m still on Herceptin.
I hope everyone who is awaiting scan results has positive news!!
Denise
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NH - That PA is completely incompetent!! I'm so sorry about the way your were treated! I'm very glad that you will be seeing your MO on Monday. The comment that your "liver is largely replaced with metastatic disease" was from your July PET scan. Your October scan sounds better to me, so hopefully your treatment is working. It's hard to know without speaking with your oncologist. Yes, a liver resection is a removal of a tumor(s) from your liver. I had a liver resection when the first lone liver met appeared. There are also local liver treatments like microwave ablation or Y90 that are performed by interventional radiologists. While the liver mets are scary, I believe that it's a good sign that your mets are only in your liver. Having disease that is isolated to your liver would make it easier to qualify for local liver treatments. I hope that your Monday meeting with your oncologist goes well! Big hugs!
Nicole - Microwave ablation is heating the tumor to kill it, while cryoblation is freezing the tumor. I believe they would both have the same concern about potentially perforating the bowel if the tumor is close to the bowel. On my first microwave ablation, the liver tumor that my interventional radiologist was targeting was close to the stomach/pancreas. She was able to use a buffer of saline water to separate the liver from those organs while cooking the liver tumor. She actually had her fellow spray a continuous stream of water to keep the liver away from the other organs while she was heating the liver tumor. You could ask your interventional radiologist if something like that would be possible. Is your interventional radiologist Dr Georgiades at Johns Hopkins?
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Theresa it was Dr. Georgiades he did my cryo... but I am seeing someone else now... I LOVE Dr. G...but Hopkins was a pain to go to and after my cryo a hour and half ride took over 4 hours with traffic in the rain it was NIGHTMARE...I am going with a IR at Georgetown..Medstar. Dr. Tabori I really really like her...my MO's brother is an interventional radiologist in NC and recommended her to me.
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D37,
One thing that I noticed in the report is at the very end, where it talks about an MRI. ("If a two stage liver resection is contemplated, MR may be helpful for further evaluation".) When you talk with your doctor, that allows you to raise two things: having an abdominal MRI (which, as I stated above, generally shows liver tumors more accurately) and local liver treatment.
You could read through this thread and find some women whose livers were filled with metastatic lesions, and they still here with us. The key is having a good MO.
I can't remember -- are you at a teaching hospital (NCCN/NCI)? If not, and if you can, I would probably get to a large center. If you can't do that, I'd try to get a consult with an oncologist at a large center (they are doing video visits during Covid.) You need some more information, and you're clearly not going to get it from the PA (in fact, if I were you, I would insist, until you are more comfortable with what's going on, that you are seen only by the MO for your in-person visits.)
Also if you can manage to post your treatment info/type of cancer/ etc., that would help folks to offer more info to you.
Good luck.
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Nicole, I consulted with Dr Georgiades and also was very impressed by him. My microwave ablations were performed at Stanford since that is were I'm treated and Dr Georgiades highly recommended the Stanford IR department. I have complete faith in my Stanford IR which made the procedures less stressful. When you meet with the new IR, you could ask about both microwave ablation and Y90. Best wishes!
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Denise, are you de novo or is this a recurrence?
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Hi Moth,
I’m de novo
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BevJen -
Thank you for all of the advice. I have updated my treatments and made them public. I had an initial consult with an MO breast cancer specialist at Dana Farber but I had to pay out of pocket because my insurance won’t pay for out of network. I’m currently appealing it since it was a second opinion. I don’t really trust my MO’s judgement. I’m going to try to choose an insurance company next year that will hopefully cover Dana Farber. My late husband, who passed away 8 years ago from pancreatic cancer, went to Dana Farber so I am familiar with the treatment center. I’m going to mention the MRI on Monday. I find that when I question my MO he gets irritated with me. Oh well! It’s my cancer and my life!
Thanks!
Denise
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Theresa45 -
Thanks for clarifying the liver resection! I feel better about knowing exactly what it is. I’m hoping that my liver mets have improved. Thanks for the positive comments!
Denise
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Nicole, whew! What a relief! Now rejoice that good news! Wishing you good luck and good news on C7 MRI tomorrow.
Shetland, glad you're getting a good response on your trial, too! Sorry you had a reaction to the flu shot though. Ugh, it's always something!
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It. Is. Always. Something.
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Nicole - Woohoo! Big time happy dance!
Arolsson, I don't know how you do it; I'd be a basket case. There should be some way you could get scan results sooner. That's a crazy long time to have to wait.
D37 - I'm sorry you had to deal with such an unhelpful PA. I think PAs are great in the right time and place, and that's not one of them, plus he was clearly out of his element. If liver resection is a possibility, that would mean there's enough good liver to leave, right? It seems like that wound be a good thing. Maybe? I hope so anyway.
Shetland - I'm glad you're on the men's after that bad flu shot reaction. Who knew?
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I just tried to send a Long post and it is not here. 😤Don’t feel like typing it again
Nicole 💃🏻💃🏻💃🏻 Rejoicing for you.
I’m Still having left side flank pain. Going to ortho to rule out muscular/skeletal. CT on Thursday if no better. Quality of life right now is scary and makes me think of - is this what the end will feel like 😪 pain, drugged up, no desire to do anything.
Hoping to turn the corner soon. Y’all are so great and I’m thankful to be able to tell those thoughts to someone. My hubby does not need to hear them.
Dee
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Thanks Ladies!!!! Im still on cloud nine over here today. lol
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