How are people with liver mets doing?
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Happy Birthday, Dee.
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SK35,
This isn't my first rodeo with microwave ablation. In July 2019, I had another liver tumor ablated. Like you, I have some number of smaller tumors (maybe 4-6? unclear at this time). My tumor was 2.1 cm. The one I'm having ablated this time is 1.2 cm. My other ones are all sub centimeter
So -- I realize that I have an incredibly high pain threshold, as evidenced by the fact that after my bilateral mastectomy with immediate tram flap reconstruction in 2003, I basically threw away my pain killers and moved to Tylenol (OTC) after I was home for maybe 2 days (maybe even less). But.... I did not find the pain to be considerable. This is just my perspective, and you may have more or less pain than I did. I was discharged from the hospital after about 4 hours to go home. I didn't feel great that first night, but slept fine -- no painkillers at all. I may have taken a tylenol or two, but that was it. For about 5 days, I laid low, not doing much at all. Over the next weekend, we had a big family event that I had to go to -- it was a very long day, but I paced myself, and sat down whenever I could. I was fine. During the second week, I slept a lot, and didn't do much, although I tried to walk some just to get some exercise. By the end of the second week, I really didn't have any discomfort or pain, and pretty much resumed my regular schedule. I will say that I didn't eat much for those two weeks, and only wanted "comfort" foods like soup, oatmeal, or pasta. I also tried to take in a lot of fluids to get the drugs out of my system.
Nicole, if you're reading this you should weigh in. I don't want to speak for Nicole, but she had cryoablation instead of microwave ablation, and I believe that she had more pain than I had.
Anyway, I wish you much luck. The procedure really isn't bad. One suggestion I would give to you -- they use like a twilight sedative. Prior to my ablation, I had a liver biopsy, and the damn nurse told me he wasn't giving me much sedation, but that I should just let them know if I felt anything. Well, damn, two seconds into the biopsy I was in pain. I screamed at him to give me more meds, which he did, but I still don't know if I got enough. THAT was more painful than the ablation for me. When I was being wheeled into the ablation, I told them two things: one, I get sick with any kind of sedation so please add the anti-nausea meds (they did). Two, I told them about the liver biopsy story, and they checked my records to see what I had been given for the biopsy, and upped it. I blissfully fell asleep maybe 2 minutes into the ablation procedure and they work me up at the end. Much better. Speak up if you're in any pain as they are doing the procedure -- I think that's key.
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I don’t know a lot about ablation or pain meds, but I can tell you that after my ERCP stent procedures a warm pack on my abdomen takes away the mild discomfort. Maybe ask if that would be appropriate and helpful for at least reducing the pain.
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Dee, Happy, Happy 59th Birthday! Glad to hear you're better and chillin' with family to enjoy YOUR day!
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Hi ladies, first of all, Happy Birthday Dee. I hope you have MANY MANY MANY more to celebrate!!!
I introduced myself a month ago and have been quietly sitting back reading posts until I had a fuller picture of my situation. I was diagnosed with liver mets beginning of Sept. secondary to 6 weeks of extreme shortness of breath (hospitalized twice to figure out where the primary source was). A high resolution scan caught part of my liver and within 24 hours had a liver MRI & a biopsy. I started Xeloda right away feeling weak and discharged with 24 hr oxygen tube. Two weeks ago I had a nuclear bone scan that showed mets in my bones. Totally shocked!! I saw my MO last week and she finally gave me some good news. My AST that was 195 on 8/1 is now 67 and the cancer maker which was 400 at baseline and shot up to 1000 is heading south (still 800s, but right direction). She also said the bone scan report is not certain that everything is mets, that degenerative disease, arthritis & past injuries can show up as dark spots as well. I am off oxygen, appetite and energy is back and finally feel like a normal person who can do things for myself!! I still have to do a brain MRI in a couple weeks and an abdominal scan (drinking barium beforehand) at the end of the month but I'll worry about those later. Trying to enjoy the beautiful fall weather while it lasts!
I do have a question..I had Tempus for my genetic testing. Do we get a copy of the results? You guys seem so in tune with your mutations.
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BevJen thank you for the tips. My IR said she prefers general anesthesia so I guess I’ll be out! I am supposed to stay overnight at the hospital and will be discharged next day.
The tumor that is getting microwave ablation is about 2.7 Cms and it is the only one not responding to Piqray. There are a few more smaller tumors and two larger ones (2.1 and 2.3 cm) but they are not going to treat them. I will definitely ask for anti nausea premeds.
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BEVJEN, I've only gotten up to mid September postings, so you may have talked about if you are having RFA for the liver tumor. I had RFA in 2016 on a liver met and I stayed NED until December 2019 after Ibrance failed. I restarted Ibrance after the surgery in late 2016 because my markers started going back up even though I was clear on my CT's. It was the first time my surgeon had done RFA on a MBC patient. They almost always go with systemic therapy but I only had one tumor, no other metastastes and he said it was doable- good attitude. It turned into a partial resection of the liver but it only took 4 holes for the cameras and instruments. I'm glad I did it and it lasted for a good while, helped by Ibrance. Let me know how you are doing. NINACA
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Hi S3K5- After my liver RFA I controlled my pain with Norco (hydrocodone +Tylenol). alternating with Ibuprofen. I guess Norco is an opioid so it might not work for you. I only needed it for 3-4 days. You can alternate high doses of Ibuprofen and Tylenol, every 2 hours, if you can take those medications. The most pain and trouble I had in recovery was getting into a sitting position, using my abdominal muscles. Once up I was doing well. I got a frame that was stabilzed under my mattress that I could use to pull me into an upright position to get out of bed. I used it for several weeks. Take care and have the best outcome possible on Oct. 19.
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Dee - happy happy birthday! So great to hear you are feeling better and taking the day to relax. I lost my mother and sister to cancer so understand completely when you think of them when their time came. But this is your story, no one else’s story. Let your story unfold. And today, enjoy being 59! Enjoy feeling good and being surrounded by love. I still have another year to get there!
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Bev and SK35 - praying for you both! Good luck with the procedure and hoping for best of outcomes!!
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Third try on posting -- I am at a place with really terrible internet and I've been kicked off twice now.
Nina -- Thanks for your note. I'm having microwave ablation for the second time (two different lesions -- one in 2019, one now). So same family as RFA, but slightly different procedure. It's amazing that you were able to get local treatment in 2016. Wow.
HopeandGratitude, thanks for your well wishes.
Dee, Happy, happy birthday.
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Hi Pamela. Us Illinois residents gotta stick together.
Glad you are doing better. Wow. Scary. Bone scans--all scans really--- are confusing sometimes. I have rheumatoid arthritis and bone scans seem less effective for me. The report always talks about "degenerative" issues plus the cancer areas. I had Foundation One instead of Tempus. I called the Foundation One company and requested a copy of my report. You could ask your MO if you will get a copy or do you have a phone number of Tempus so you can call and ask for a copy?
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Grannax,
Doc at UTSW was Dr. Carlos Arteaga. Very nice response to my inquiry about some articles that he co-authored, and then he also suggested a clinical trial that I didn't ask him about.
Pamela,
I got my F1 report from my MO. They should be able to print it out for you, or alternatively, if you have a patient portal, they will probably post it there. It should be part of your medical history and posted.
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Happy Birthday Dee enjoy your day!!
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Dear Arolsson, I completely agree with Sandy Beach''s suggestions that you shouldn't be alone right now. Reach out to your medical team and let them help you through this in any way that they can. You shouldn't have to live in terror. My heart goes out to you.
Dee, happy birthday! Hold on to every bit of happiness and hope! Many hugs!
Katty
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Ok guys, what do you think of this??....
I have had CT's the entire time (3 years now). The CT reports always discuss the single met and what the measurements are currently. And say "no other liver mets noted" or something like that.
Now I had a liver MRI.
Got a message from nurse today. 4 spots seen. Original area at 12mm. And 3 more at 6-7mm. Nurse says not considered progression. Because MRI more sensitive than CT. This was a baseline MRI and we will repeat in 2-3 months and compare the 2 MRI's. If growth, then considered progression.
Thoughts......
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Candy,
I saw that Cure-ious responded on the other thread where you posted.
When I was diagnosed with liver mets in 2019, the CT only showed a "shadow." I assumed that was one met. My MO wanted MRI followup. The MRI showed the liver with much more specificity, and showed multiple spots of mets, and spit out all of the measurements.
My interventional radiologist says that MRIs show the liver much better than CT scans. Some may disagree, but that's my story and I'm sticking to it.
I know it's probably shocking to hear you have multiple spots, but that doesn't mean they just "showed up." They were probably there all along, just not picked up on the CT.
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Dee, Happy Birthday!!! Wishing you many, many returns, good health & much joy.
arolsson, girl, you sound so stressed and sad. Reach out IRL to someone. Drugs, talk, hugs, scream therapy, whatever. Even if it's just a telehealth appt where you cry through the whole thing (btdt), it really does help. You think it won't and it's not and then you look back and go, that DID help. You're carrying too much on your own
Pamela - oh ugh, bummer about the possible bone mets. Sorry to hear that. Glad to hear your blood work is showing good trend lines for liver & cancer markers! Sounds like you're on a good treatment right now and it's working quickly! Glad to hear you're feeling so much better now.
candy - I've heard the same as you, that MRI is more sensitive. Those sound like tiny spots and maybe they turn out to be something else anyway? I've been having CTs for my stage IV monitoring too. What made your dr switch to an MRI?
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moth- I am now going to a new doctor. We did a CT with the new doc/facility and the radiologist saw a 7mm spot not seen in reviewing the CD's of the CT's from the old facility. So the radiologist suggested a MRI.
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Ok, so thinking about this today since I heard from the nurse. I always thought I had 1 liver met--- 8cm when found. All the CT's locally have talked about that 1 met. I have focused on that 1 met. We biopsied that 1 met in the beginning. It has been all about that 1 met. Now, I did MRI and there are 4 spots. Those might have been there since who knows when, the beginning even. Since we have not done an MRI before.
So, question.... I guess the 3 other spots are cancerous? I mean makes sense. The original 8cm met was biopsied and was MBC, so not a stretch that the 3 other spots are cancerous too--- broke off from the original big one. Is that the way we should think? We cannot biopsy the others--too small for now. So assume that they are MBC too???
Thoughts.
This has me thinking in a new way---4 spots, not 1.
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My MO does MRI to follow Liver mets every 3 months. It is more sensitive. The mets show up during the arteriole phase of MRI (when the contrast is quickly injected). I also have bone scan every 6 months.
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pamela
Thanks for checking in. Hoping your treatment keeps giving you good results.
Candy-678
My MO did the same thing. Started with CT switched to MRI at RO request and discovered more mets. She said they were most likely already there and too small for the original PET scan to pick up. She explained it like this- cancer cells are circulating in your body like little seeds trying to find good soil. For some people it’s the bones, others the liver etc. It was a smack in the face to think I only had 2 tumors when really I had more. I understand your having to change the thought process.
Thanks for the birthday wishes. I got to be with my 4.5 yo adorable granddaughter who just melts my heart. I am still having migraines and other symptoms. But a miracle happened and I got my new patient neurologist appointment moved from December to tomorrow!!! Hoping to get some help.
Dee
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I'm seeing that a lot you ladies know how many mets and their sizes. Because they think mine started before my lumpectomy 4 years ago, my scan results read " There are diffuse innumerable hypo enhancing mass lesions throughout the liver consistent with metastatic disease. The largest lesion is seen within the lateral segment of the left lobe measuring 3.7 cm." Anyone else here have their liver filled with small lesions infiltrated through the liver? This is why I wasn't a candidate for targeted therapy.
Candy--these were found with a MRI ABDOMEN LIVER(W+WO IV contrast). I get my follow up one at the end of October but they'll add a barium drink to see how my liver is filtrating (I think that's what she said).
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Yes, Pamela. I had mets all over my liver, various sizes at diagnosis, and Taxol took care of them. Later when I+L failed I looked into local treatment, and the IR said that for multiple mets the appropriate local therapy would be radioembolization aka Y90. But I did not proceed with it because systemic therapy (Xeloda) did such a good job. If a stubborn tumor pops back up, I may still do some limited Y90, as in my particular case they are afraid of infection with the other methods. (I had a liver abscess.)
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Candy, the radiologists are pretty good at distinguishing liver mets from other things. I agree with the others; you probably do not have new mets, just a new scan modality, new information. But it still sucks. Remember that the right treatment can wipe out four just as well as one.
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Arolsson- I hope you are feeling a little better. I agree that your care team should work with you to help you deal with this. Hugs.
Dee, Happy Birthday!
Pamela, my original MRI report listed the sizes of the two largest tumors, and stated "numerous smaller tumors", but they started me on targeted therapy. MO was considering change in treatment if PET/CT results did not show good response.
It amazes me when this group starts discussing something, and it's spot on to new questions I have. I got my PET/CT results today (great news!) and I was wondering about a difference in the reported size of my largest tumor. MRI at end of May said 11.8 cm; results today say current size is 7.9 cm, down from 13.7 cm at end of June. So, I was wondering if the MRI measurement was smaller because it's more sensitive than the CT (or if that was really rapid growth) - and here you all are discussing just that. I'm relieved to know treatment is actually working and thrilled that my next scan is not until after the holidays!
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Dear all, here at our NCI we have golden standard: MRI for liver and abdomen (MRI is more specific for these "parts" than CT), CT for lungs and bones (more specific than MRI). From chats with doctors I also know another thing: if you do liver CT, complement it with ultrasound. Good ultrasound specialist sees everything, even easily distinguishes active from inactive, except for bones. So here at NCI they always scan according to schedule: MRI/CT (0 months), ultrasound after 1.5 months (1.5 months), MRI/CT after another 1.5 months (3 months), ultrasound after another 1.5 months (4.5 months), and so on. I really feel it is a way to go and... Also, let's remember that ultrasound is cheap and harmless, there's no contrast, no panic in small rooms, takes 30 minutes and you have results right away.
Candy... your other spots might be something else. They might be hamangiomas (good guys) - those are always picked up by MRI and are very hard to distinguish from metastases, also these can be inactive lesions that maybe have always been there - this has to be discussed with the radiologists, as MRI sees both, active and inactive things. Now... there's really a possibility to compare your last CTs with this MRI - now that they know where these spots in MRI exactly are, they could look for them in CTs again, but for this... a lot of will is needed, as most radiologists just say "you cannot compare them". Well, in reality you can, just it is an effort and a thorough work in the "shadow world". For me you sound very "oligometastatic" (not considering the bones), same as SeeQ, as your big met acts a bit like in-situ. There are known cases (and here I talk about many) where for some unknown reason just few metastases are formed and they behave in an unusual way, just growing but not spreading. They can be very big but if you ablate/cut/kill, they are gone for good, like in-situ primaries. Maybe I am always too optimistic but I think if you could put a bit more pressure on your teams, they would sort out these questions for you and you would benefit.
Saulius
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Thank you all for your words.
I cannot see the typed report yet--goes to patient portal after 7 days--, but I want to see how it is worded. But the typed message from the nurse said " 3 of the 4 spots are 6-7mm so they consider a characterization of mets but unless over 1cm it can be difficult to really tell and probably why it hadn't been mentioned on CT". "If repeat MRI's show growth, then we will consider it progression". She said we cannot compare apples to oranges-- CT to MRI. So we will watch MRI from now on, I guess. Since more sensitive.
These 3 other areas may have been there the whole time and the current treatment is keeping them controlled - as Shetland said, the meds can work on 4 like they can on 1. Or they could be something other than cancer-- which is why I want to read the rad report and see how they word it. Or they could be the beginning of new tumors. We do not know yet. Just took me by surprise that there were 4 spots, not 1. Gotta keep me on my toes and not let me get too comfortable.
SeeQ- Congrats on the good report!!!
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Ahh, always these apples with oranges...
You could really easily check these things with ultrasound. Saulius0 -
BSandra - thanks for the info. I had gathered (maybe incorrectly) that the larger tumors were not suitable for local treatment. I would love to see them killed vs suppressed.
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