How are people with liver mets doing?
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WOW, girls, there is so much going on here.
D37. I hope you file a complaint against that PA. Such an arrogant nobody to treat you like that. Unnecessary drama. Yes, MRI should clear up the confusion.
I couldn't believe it when you mentioned your husband died eight years ago from pancreatic cancer. My husband died 10 years ago from pancreatic cancer. It's tough doing this alone. I get it. I hope that you will be able to go to the bigger center where your husband went. Or, at least get a second opinion from them. Maybe they would even work with an MO closer to you. 💞
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Nicole, I have forgotten what TX you are on? Whatever it is, that's a great response. I'm sure your IR will tell you which TX you can stay on while you have your y90 or whatever local TX he says your a candidate for. My IR told me that he thinks it is great when systematic and local are used simultaneously. Best of both worlds. I hope that's what you get to do.
Shetland, it is ALWAYS something.
Dee, so sorry to hear how you are feeling. I hope you get some answers on Thursday. Yesterday afternoon I got so discouraged that I just wanted to cancel my appointment for today. I'm so tired of all of this. The ups and downs, the anxiety related to scans, results gets overwhelming. Not to mention pain like you're having. Praying for you.
Only three or four more hours for me. My daughter is going to take me. 💞
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Nicole I am SO HAPPY for you!! These are the stories that give us hope and I'm sure you feel a large weight has been lifted. Enjoy the victory!!
D37--I was dx in Sept and the scan sounded similar to your results. my liver had been enlarged, "infiltrated" with mets, & my liver enzymes were up (AST 195--should be below 37). My baseline TMs were in the 400s. I just had an abdominal scan yesterday and am curious for the results but last week my liver AST had dropped to 43, TM finally starting to drop below baseline (they go up first couple months of chemo) and upon her feeling my abdomen, she said my liver has shrunk. Has your MO been taking TM numbers and telling you about your liver enzymes? The AST reflects liver inflammation. This may give you some knowledge to determine if chemo is working. Definitely ask if you are on Taxol 12 weeks or 12 rounds. Are you on weekly or every 3 weeks?
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ugh, guys, I have my appointment to see my oncologist and trials nurse & get all my results tomorrow.
TODAY, I just got a call from an ROs office saying I'd been referring by my MO and booking an appt. WTH? I wish they hadn't called me until after I saw the MO
My GP is cleverer than that - ages ago when she was booking me in for surgery asap she wrote on all the requisitions "patient is unaware, do NOT contact pt" so I wouldn't find out from them ...
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Dee- Yes, feel free to speak whatever is in your heart or on your mind. We are here for you and will hold you up when you need it. So sorry you are feeling so poorly. Praying for you for Dr visit and a good outcome on CT if needed. Hoping they can get some things under control so you don’t have to feel this awful. I think we all have those days and wonder what the end will be like....but I try not to go there too often because none of us has that part of our story written yet, and all of our stories will be different 🙏❤️
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SeeQ - I agree that the PA was out of his element. I’m going to make sure that I don’t get scheduled with him after any scans.
Dee - I am sorry that you are in so much pain. I hope they figure out what it is soon and you can start to feel better.
Denise0 -
Moth- I would be stressed too to hear from RO when you have not talked to MO yet. But, at least, they are on top of it and ready to schedule an appt with you. Post tomorrow with what you learn. Hugs.
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Grannex2. - I’m sorry about your husband. My husband was 48. When I was diagnosed my first thought was that my children have already lost their father. I hope you have people that are supportive. I met my fiancé 4 years ago. His wife died of brain cancer and he has three kids too so we have a lot in common. We were planning on getting married in a few years but might do it before the end of the year. His insurance covers Dana Farber Cancer Center in Boston.
Pamela - I didn’t know that AST referred to liver inflammation. Mine started out at 94 and it’s now 23. My baseline TM was 1876 and now it’s 340. I hope the scan results reflect those improvements. I have Taxol three weeks on and one week off. I also have Perjeta and Herceptin every 21 days. I hope your scan results are positive. It sounds like they should be. That’s great that your liver has gotten smaller. I had ascites and it looks like I don’t now according to the scan results. When will you get your results? Waiting is hard.
Denise0 -
Thanks Ladies...still on Cloud 9 over here
Grann.... I am on Erubulin/Halaven Chemo...my MO already agreed I can go off for any Y90 or any procedure
. I am happy to hear that about them working simultaneously! 0 -
D37– not sure when I'll get results. My baseline was taken in the hospital since I was inpatient at the time. My insurance said I had to go to an independent imaging center for further scans. She said they read it within 24 hrs and fax it over to my MO so she should get it Tomorrow at the latest. Then they give me a copy of the scan on a DVD. Part of me wants to dig out an old computer that has a disk and see if I can see the images although I'd have no idea what I was looking at.
My brain MRI scan was last Thursday at the same center. Just got news that it's all clear!!! Since my insurance didn't pay for a PET I got separate scans. Was dx with liver Mets, Bone scan came back positive shockingly so very happy brain came back good. Lungs are good too. Just less to worry about but these results will really allow me to exhale a bit.
Also, my MO mentioned my swollen lymph nodes I've had done July is probably cancer in my lymph nodes. She made it sound like a lot of Stage IV have it. Who here knows for sure they have it there? How did you know?
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Pamela23, I have it in my mediastinal lymph nodes. It showed on my original CT. I think there is a general assumption that lymph is how many breast cancer cells spread, though I'm hearing some researches arguing for a vascular spread as well.
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Nicolerod, I am happy that you finally found the chemo/treatment that is working for you.
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Pamela and Moth- We think mine spread per vascular. When I was first diagnosed with breast cancer, we thought it was Stage 2 (for 3 months, till we found the mets). We did a lymph node biopsy and it was negative. The doc said good that it was just in the breast---hahaha. When we found it had metastasized, they said it probably spread thru the blood stream not lymphatics.
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My MO said my metastatic spread both ways..lymph and vascular.
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Ladies I know this is the liver thread not bone mets but Ok ladies...just got more good news and absolutely had to share here.. here are the results of the MRI C Spine...
"1. The enhancing lesion involving the posterior elements of C7 has
diminished in size/conspicuity compared to the prior examination,
consistent with disease regression. There is no canal compromise or
epidural tumor.2. No new enhancing lesions are identified."
Thank you for all your prayers!!!
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Nicole that is amazing news💕
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Great news Nicole that this systemic treatment is working! I am so happy. Thank the good Lord. I pray it works for a very long time.
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Praise the Lord, Nicole. Hope this treatment is the one for you and you get a long time on it. Hugs.
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Nicole I am so pleased that you are at last getting some good scan reports
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Nicole, More good news! Hurray! Sending hugs and positive thoughts for continued success!!
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I am such a big "cry baby" I swear... I read your responses and my heart just gets so full of love!
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Nicole, FAN-FREAKING-TASTIC!
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Hi guys, so I got a mixed bag of results. Bloodwork is fine, LFTS are normal. Overall tumor burden is reported as stable: liver mets continuing to shrink but my lung met, which we thought was all necrotic and had been shrinking, suddenly grew in the last 8 weeks. When everything added up according to the RECIST criteria, it doesn't count as progression but this lung met is large and having it come back to life and increase is bad.
MO said ideally we'd get that thing radiated and stay the course with the systemic treatment but I can't have radiation to a target lesion while I'm on the trial - it's against the trial rules. And if I go off trial, I lose access to the immunotherapy atezolizumab which she thinks has been so helpful with the liver mets....she's lobbying hard for Roche to get me the atezo through compassionate access. Other option is come off this trial, give up on the immunotherapy, radiate (if I had my way we'd radiate everything - lung and liver) and switch to a different chemo. None of the other immunotherapies are available here so keytruda or trodelvy are not options right now.Meanwhile we continue, doing taxol (going back to full dose; I had been dose reduced for many months but I'm feeling better so we agreed to hit this hard again) & atezo tomorrow. She's hoping to have final answers & a plan by mid Nov.
I guess this is the metastatic life. One step forward, one back, three sideways... each month of good news was stressing me out because I felt I was getting closer to the inevitable bad news. You can only roll so many 6s in a row, kwim?
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Moth,
Sorry to hear about the lung met. Sounds like your MO Is on it pretty quickly, tho, putting you back on full strength of taxol, etc. I hope your MO can get you the atezo on compassionate use so you can blast the darn thing out of there. I'm like you -- I believe in the whack a mole plan for surival.
Good luck, and hang in there.
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Moth- Sorry to read that you have had good news with the liver, but progression in the lung. Sounds like your MO is doing well with planning the next steps. Keep us informed. This cancer crap is hard. Constant stress. Read somewhere recently that stress is bad with cancer, but, good grief, how can we not stress. We live in a state of constant stress.
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Grannax- Any news?
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Moth, so sorry to hear about your lung mets growth. Mets is such a roller coaster, hope that taxol works in decreasing the lung mets. During infusion, I was icing my feet and hands to prevent nueropathy, which definitely helped.
Nicole, so glad to hear about your reduction in tumor burden in the bones and liver. Hope this continues and you get to be NED on this treatment.
BevJen, how are you doing? Did you get your biopsy results? My oncologist office has scheduled a tele-health appointment tomorrow to discuss this. I don't know why. I had thought she would upload it to my portal. After a little more than a week of liver ablation procedure, I had expected the pain near my right lower rib cage area to reduce. But it hurts to take a deep breath. There is a constant nagging pain. The IR nurse says this is to be expected since the IR doctor had to go through the ribs to get to the liver lesion. It is hard to sit and work every day!
Grannax, any news on your scans? Hope everything is good.
Sandibeach, you are right. Cancer cells can metastasize both ways - through the lymphatic system and also through the vascular system. Most of us with positive lymph nodes at the time of primary diagnosis already have lympho-vascular involvement.
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S3K5,
Sorry to hear you are still having pain. My pain has pretty much subsided, but I have a nice yellow bruise on my abdomen. I think it really depends upon where they go in. My lesion was at the lower part of my liver, and so I think they were able to go in from below -- when they wree starting out, the fellow (I go to Hopkins) said he might have to go between the ribs, but it doesn't look to me like they did that. I do have to laugh, though, because there are 3 little spots there were they must have put something in. There should only be 2 (1 for biopsy, 1 for ablation.) I was in twilight sedation, and at one point, I did hear the IR tell the fellow to go and look at the original MRI, so I'm wondering if he was going in the wrong place. I had the sense that the IR finished up the procedure, but of course, I'll never know.
So my path report is up on my patient portal. Confirmed that it's lobular, which is my cancer type. Some weird wording about estrogen positivity, so I'll have to ask my MO about that. Also came back as HER2-, which I was wondering about because I have two ERBB2 mutations, and when they recently did a liquid biopsy, they found two random HER2 cells floating around in my blood. Our main purpose in doing the biopsy was to send it out to Tempus to generate a new genomic report bc my last tissue report was May 2019. So we'll see what transpires.
Just fyi -- online on one of the medical sites, it said that it takes 3-4 weeks to recover from a liver biopsy, so I assume that's pretty accurate. With my last ablation (no biopsy) it was a good two weeks before I had any oomph. Good luck.
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I really hate to tell all of you. that I got bad news yesterday.
So, there are multiple new and enlarging lesions in both lobes of my liver. I'm still in a little bit of shock.
First, I will have a liver BX. She wants to send it to Tempas. Including a liquid BX this time. Just in case a different mutation shows up. There's also a small possibility my IR might be able to do a third set of Y90. She has decided on Halaven for when I start chemo. I'm not sure when that will be but probably in the next few weeks.
My lung mets are stable. On my exam she could feel my liver, it's hard and it was painful during the exam.
As you can easily imagine I'm still trying to absorb this information and find a way to move forward. I'm pretty discouraged.
I do hope to get some advice on Halaven. It does cause hair loss, right? How often is it given? SE you've had etc. Thanks 💞
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oh crap grannax2. Im here with you in the shitty news club. Passing you some tea and pastries and chocolates. I've spent the afternoon in bed sulking after my appointment. Sounds like you have several options so that's a positive thing. Hugs
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