How are people with liver mets doing?
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One last post ... I wanted tp thank you all for your lovely and kinds words. I was deeply touched. As I wrote on the Ibrance boarrd (where she most often posted) you all were so very supportive -- she talked about you often and I came to consider you to be friends also.
To answer a vital question -- infiltrative liver metastasis is not seen on scans. She had six scans over the course of the two months before her passing -- ultrasounds, CTs and MRIs -- nothing showed up. Perhaps if she'd had a biopsy sooner it would have made a difference though we we told (and I believe) it was so aggressive that the only outcome would have been a few extra very miserbale weeks with IV chemo. If yILCour TMs and liver enzymes suddently skyrocket but noting is visible keep this in mind -- especially if your were ILC originally.
Sending you all love and peace,
Harry
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Pamela, this is the right place for liver mets. Sorry you find yourself here, but welcome.
Harry, I am so sorry for your loss. Thank you for sharing Penny's story reminding us of how quickly things can change. My condolences to family and friends.
BevJen, sorry you're waiting so long for that final report and the confusion of it all. I may be moving to Piquay.
My PET scan Friday showed regression in my liver, but 6 new very small lung nodules. I see MO Thursday to discuss options. If these turn out to be lung Mets, the Xeloda was working on liver, but allowed possible spread to lungs, so she may move me to Piquay.
S3K5, thank you for sharing your experience with Piquay which makes me feel better about taking it.
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Aseye, I had no symptoms of liver mets. They were caught on routine follow-up CT scan.0
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Bliss,
I got the final report yesterday afternoon when I went to the imaging center to pick up a disk of the MRI. A very nice woman there said -- wait -- where is the final report? I explained that it wasn't available yet and I didn't even know if it was done, and she made a call and tracked it down. It had been signed off on at 8 p.m. on Thursday night. Still not up on my patient portal, so I appreciated it.
The final report was identical to the prelim. The prelim was done by a resident, the final was signed off on by a supervising radiologist. Of course, I can't reach either of them, so I've reached out to the interventional radiologist who ordered the study. We'll see what he says. My MO is waiting for that, as well as for a consult that I'm having on the 21st with my consulting MO at Northwestern.
I'm sorry to hear of your possible progression, and I think it's so weird that these drugs can hit one target (for you, liver) and not others (for you, possible lung stuff). You would think that they would hit all or none. Good luck with your MO visit on Thursday. We may be meeting up on the Piqray board.
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Harry- thank you for taking the time to updsate us on your lis. We continue to learn from you and Penny. many hugs and much love to you.
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Aseye, no symptoms early on. We were tracking elevated liver enzymes for almost a year - finally u/s and MRI identified them.
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Aseye, no symptoms early on. We were tracking elevated liver enzymes for almost a year - finally u/s and MRI identified them.
My second opinion doc said they were probably there for years without any indication.
SandiBeach had the best advice - contact youre MO and tell him your concerns.
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Aeye: I had no symptoms either. My MO ordered a PET scan in an abundance of caution and that was how it was found. Like SandiBeach, I would tell your MO about your concerns and try to get a scan.
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Aseye, I had pain below my right rib cage on the side and also pain in my right shoulder blade area. It felt like a stitch that you’d get from running but a lot more painful. It hurt when I took a deep breath and sometimes when I was just breathing. Physical activity made it worse.
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aseye, I did have tender liver (& when tested, elevated liver enzymes). My liver wasn't painful enough to bring me to the Dr though; I had a lingering cough and the lung met was found first & then we found more on abd CT
Elderberry, I've had the port accessed twice already and it does make things easier! Because I'm in a clinical trial I have to go in for lab work and to see the trial team the day before each treatment. Can't use lifelabs for anything, only the trial approved hospital lab.0 -
Aseye, I had no symptoms from my liver mets at DX. Lung mets symptoms, cough, etc, took met to my PCP. I thought I had pneumonia. I was shocked when the PET revealed extensive lung and liver mets.
Later, when TXs failed, I did have liver related pain below my right rib cage and referred pain in my right shoulder blade and joint exactly like D37 described.💞
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BevJen- sorry to hear news on new liver met. And sorry about the crappy prelim report. You have options and hopefully the visit with your IR and a better report/clearer interpretation will get you on the right path. Prayers!!
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Hi SeeQ, I can only echo what others have said, welcoming you but being sorry for your situation.
I rely on this thread a lot, there are also many others for related issues. I used to worry about posting a question on the "wrong" thread but everyone is so kind and helpful. Lean on us! Best, Amy
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Arolsson, thanks for the welcome. There is so much caring, strength, and information here - from people who "get it". I'm glad I found it.
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Welcome SeeQ.💞
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BSandra- Any news on scan results? Thinking you had scan last week.
Bliss- MO appt tomorrow, right?
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I had my I had my 5th infusion of Halaven yesterday. I got the Neulasta and Im feeling ok.
My liver started feeling better......so I am wondering something.... My son and future DIL gave me a gift of a massage for my birthday while I was there visiting. I went and the lady was someone I use to (years ago) go to regularly for massage. Well she did the massage didn't go deep but she said I was really bad (tight etc) I knew I was...and she did some energy work...well it was later that night in the middle of the night I had a lot of liver pain and gassy...I did (of course) drink a ton of water but by the next afternoon I was feeling better and markably less liver pain...now I am not really having any...and my bilirubin was great yesterday 1.1 which is AMAZING for me (I have Gilberts Syndrome)... Anyway I am wondering if the massage and energy work was moving some toxins around?....
My MO did offer to move up my scans (bc I asked her to) and they are scheduled for Oct 6th. so I have my sons wedding Oct 3rd...then chemo the 5th then scans the 6th....I see my MO next Thursday...if my liver still feels good by then I am gonna ask if she thinks I should wait till November as planned...
Any thoughts? (I will cross post)
Nicole
PS: this is me and my sister at my future DIL's bridal shower...I have my new wig on! I am in the striped outfit
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Nicole -
No thoughts on the massage and toxins, etc. -- but the pic of you and your sister is great. You look lovely in your wig, and you look happy. Wonderful.
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Nicole- Good pic. Hugs.
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Nicolerod
So gorgeous! 👸🏻You don’t look old enough to have a son getting married.
Massage can be such a good thing - it activates the lymph system and can loosen scar tissue. Glad you feel better. Talk to your doctor and see if she recommends OT massage for scar tissue after breast cancer surgery (even 7 years later for me) Mine is covered under insurance and I go often for my Lymphadema and scar tissue - 1 hour massage for the price of a copay!!
How long has it been from your last scan? My MDACC MO said 8-10 weeks is reasonable when you are on a new medicine and have been refractory.
Dee
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Bev, Candy Thanks for the compliments
Dee Thank you also for the compliments my son is 27 . I just turned 52 Sept 9th
. Dee what did you mean by OT Massage? (Occupational Therapy)? My son is an Occupational Therapist lol. Anyway is that what you mean by OT? If so do I call my Insurance Company and ask if Occ. Therapy massage is covered?0 -
Interesting about the massage. It makes sense it could boost up circulation and help clear out minor issues. Did you feel worried with COVID risks? I so miss getting massages but have felt too nervous to go back yet. I have a Massage Envy subscription and my massages just keep accruing. If your labs look good and are trending down, I suggest waiting the until November.
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Nicole
My Occupational Therapist is a center of excellence for Lymphadema. Everyone who has lymph nodes removed should be assessed by an expert. She also does breast cancer scar tissue therapy. My MO gives me a prescription
https://lymphaticnetwork.org/centers-of-excellence
FYI-Actor Kathy Bates is the national spokesperson for Lymphadema.
Hope you can get some regular help with massage.
Dee
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Thanks JFL...
Dee thank you...I should have mentioned I do have all my lymph nodes..however I do get pain from scar tissue from the radiation I had back in 2015 with my Stage 0 BC.. Dee...so you see an OT that is also a licensed massage therapist?
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Nicole, Nice pic of you and your sister! I wonder if the relaxation and de-stressing from the massage, besides the physical manipulation could have helped you, too. I think our bodies work better when we can let go of some of the stress and anxiety.
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Nicole, the massage may very well have helped you. Whatever it was, I'm glad you're feeling better. Maybe you should delay the scan and just concentrate on your son's happy day. Nice photo of you and your sister!
Candy, you're so on top of it! Yes, I do see the MO tomorrow after my labs and Herceptin infusion. Thanks for the shout out.
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Dear Candy, thanks for asking. Ultrasound was good, but the doctor found two 2-3 mm visible lymphnodes in the left axillia level 2-3. This may mean nothing, and he said if not Sandra's history he would not even be paying attention to that, and maybe even last times he did not pay attention to them himself, so he wrote "ultrasound check in 3 months". For sure we freaked out and got very anxious, even cried because we were hoping for a "perfect ultrasound", as we are perfectionists - all or nothing. Everything else is NED...We'll go for another check up in a month instead of 3. I know any metastatic patient would be super-satisfied with these results, so I felt ashamed to write about our "worries" when people have real struggles here:/ With all my heart, Saulius
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Saulius I am glad to hear NED...and you have every right to be concerned about the Lymph nodes thing...I believe everyone here completely understands how that is we all get worried. The doctor wasn't worried enough to order something further now so that is a good sign. Relax and enjoy NED
. So happy for you both.0 -
Dear Nicole, thank you so much. To see you smile is one of the best things on this board, ask anyone!:)P And in the photo with your sister you both look so beautiful and full of life. Ah, it is such a blessing to have loved ones and to be loved. Saulius
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Nicole, you are gorgeous and radiant and your sister is a living doll!
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