How are people with liver mets doing?
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Thanks for the update on Nicole BevJen. Hopefully they can get on top of it ASAP.
Moth and everyone, thanks for you thoughts. Yes my bloods were fine as were my oxygen saturation levels, so I do think it’s fluid around my organs which are causing the breathlessness. Just need to wait and see what the scan shows up and that they report on it quickly.
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BevJen, thanks for letting us know about Nicole.
Please let her know that we love her, are thinking about and praying for her relief and some insight as to what is going on.
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Nicolerod..it is upsetting to know you are hurting. You aee not alone..we are here.
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oh Nicole! You have been through soooooo much. I pray they get an answer to what is causing you so much pain. I want so much for you to have a time of peace and rest and recvery
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hello!
I started Ixempra 3 weeks ago. The bone pain was awful and severe fatigue.
Is anyone familiar with it? There's a very short thread on it but not much more info.
Any help with bone pain?
thanks!lee
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Nicole, I so hope you are doing better and your team can help you relieve the pain.
BellaTassie15, I've been thinking of you, hoping they have your liver enzyme issues sorted out. Let us know how you're doing.
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Man, Nicole is suffering - that breaks my heart:/ Hope she gets better soon - docs will find the issue and should fix it. In the mean time... My wife's latest results: December 28th, ultrasound: observed lymph nodes in September under clavicular bone: two have decreased from 2.4 to <2 mm and are barely visible, one has increased from these 2.4 to 6.5 mm - ultrasound specialist says "strange", and "if there would be something bad, they all should increase", and "maybe some reaction from something", and "relax and comeback in 3 months for a check-up". January 11th, liver and inner organ MRI - all clear. So... basically these are good news. I don't say "very good" because I am a freakin' perfectionist and these lymph nodes don't let me sleep... but considering what others go through, I probably ask for too much:/ Your Saulius
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BSandra- I am happy your wife received "good" news. I too am a perfectionist so I understand.
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Saulius,
I think that sounds like good news, and yes, perhaps your wife was responding to something else -- we all know that once we've had cancer, every test is over scrutinized, looking for something going on. For now, I hope you can relax just a bit. Best wishes to you and to your lovely family.
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Saulius,that sounds like good news to me. I can understand your anxiety over the lymph node that increased. Hopefully there is a benign explanation.
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saulius, congrats on the good scans!
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Just heard from Nicole. She is still in the hospital, but feeling pretty good today. She had an endoscopy this morning, and is waiting to hear from her doctor. Preliminary theory is that this is all due to the y90, and her body needing time to heal from that. But it sounds like for now, they've got the pain under control. I'll update later when I hear more, or else Nicole, I'm sure, will post if she is released from the hospital today.
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Hi Lee,
People have taken Claritin to help with bone pain with varying degrees of success, so you might look into that (and of course consult with your doctor) since it is OTC. When I had to use a Neulasta patch a couple of times, they always recommended to take Claritin before and after to prevent bone pain and I never did have any.
I hope that your pain is resolved quickly!
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Saulius, that sounds like a very good report! I understand how hard it is to discount the naughty lymph node, but hopefully it will be back to normal in 3 months. In the meantime, I hope that you and your lovely wife are staying warm, eating good food, drinking good drinks and enjoying your time together.
All the best,
Katty
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Leee - I care that you hurt but have no advice other than try to move around if you can- it’s supposed to help the fatigue. I hope your doctors can get that all under control.
Saulius- So happy for your good report. It’s hard to leave the concern of the 1 lymph node variance behind, but try to let go and enjoy!
Nicole- sweetie you have been through so much. Glad to hear things are improving. Hoping you get the answers you need for peace and decisions.
Dee
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On the whole, good news Saulius!
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As of tonight, Nicole is still in the hospital. She was doing better with pain, but she texted me this evening and said that the pain started to come back pretty intensely, so they are trying her with dilaudin (sp?) pills. As of the last text, they weren't holding her, so it's up in the air if she will be released tomorrow or not. I'll know more tomorrow and will update you guys.
Keep thinking good thoughts for her.
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Thank you all for your kind words! Eh, I know it is all good news... NED has its own "privileges" and fears... hopefully lymph node fluctuation (ultrasound doctor said "if not your medical history, I would not be paying attention to these nodes") will be explained later. I also wanted to thank BevJen for updating us on Nicole. I wish she gets better soon. Please, if you have another chance, tell her we all here hold fists for her (don't know if there's such a saying in English?). Saulius
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lol saulius, in English we "cross our fingers" (middle finger crossed over pointer). But in Polish we say "we hold our thumbs" putting the thumbs into a fist. Is that what you do?
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Saulius, nice to hear good news about your wife's scan results. Now you both can relax!
BevJen, thanks for the updates on Nicole. Hope she feels better soon. If the pain is due to Y-90, I guess the hospital can't do much and they may release her soon. Hopefully she'll get a prescription for pain medication. This pain sounds horrible. Is this common with Y-90 procedure?
My next local treatment may be Y-90, since I have numerous tumors in the liver. After hearing what Nicole is going through, I am getting nervous about getting this done.
Leee, are you taking any pain medication for bone pain? Do you have bone mets? I don't see any diagnosis in your profile, so hard to say what treatments you have had so far. Bone pain due to neulasta or Xgeva can be controlled with claritin or other anti-histamines. For other causes, you may want to reach out to your oncologist or pain specialist to prescribe you a pain medication. Hope you feel better.
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Dear Moth, in Lithuania we "hold our fists tight" for someone, if fists behind your back, even better, more luck:)
Dear S3K5, thank you... we'll try to relax a bit... also, there are several women who have done Y90 here (and even not once!) and they were okay.
We wait for Nicole to get better and come back home...
Saulius
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Nicole update!
I just got off the phone with Nicole. She is still in the hospital, but in pretty good spirits right now. They are trying to get her onto pills for pain relief, but they were having some difficulty again last night. They switched to a liquid suspension of the pain killers, and that seemed to work better than the pills. Today, they are going to try with the liquid suspension again and see if it will hold her. Of course, she is eager to go home, but wants the pain issues resolved so that she's not going back and forth to the ER.
As for the cause, her IR told her that she thinks that because the two tumors that were attacked with the recent y90 were near her colonic wall, and because she's very thin and doesn't have much padding on her body, some of the radiation might have slipped into her colon. The radiation is all gone now due to time, but it may have irritated her colon enough to cause pain there from inflammation, and it will just take time for the colon to heal up some and the pain to subside. (There was some mention in her scan about the colonic wall.) So she's grateful to have what seems to be an answer for all of this pain, and just hopes that it subsides sooner rather than later. Her IR doesn't think there is any chance that this could happen again with the second y90 bc the other tumors are in a different part of the liver, far away from the colonic wall.
She's waving to you all! Keep thinking good thoughts.
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BevJen - Thanks for all the updates on Nicole! I'm glad that they have a theory for what is causing the pain and that it is unlikely to happen with the second Y90. As for your own treatment, when will you be starting pembro? My oncologist has suggested a Phase 2 Pembrolizumab + Bayer ATR inhibitor trial as a potential next option. Of course, there are no slots available on that trial until March at the earliest. I read recently that local radiation treatment to liver mets can help them be more sensitive to checkpoint inhibitors. I wonder if the microwave ablations could help too.
Nicole - Praying that you are pain-free soon and sleeping in your own bed!!!
Saulius - Congrats on your wife's good scans!
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Theresa45,
I will be starting Pembrolizumab (keytruda) next Tuesday. It's an "on label" use for me due to the tumor mutation burden high results on my F1 and Tempus reports. I'm not sure that my team is so crazy about me starting this versus moving through things like piqray and others first, but I really pushed for it. At the beginning, I will get it every 3 weeks, and after we do that a couple of times, I'll move to every six. I think there are also Pembrolizumab trials with faslodex -- I was just talking to the NP at Hopkins about it but Hopkins doesn't have it. I'm a little nervous about abandoning all of the estrogen suppressing drugs after all of these years -- I started on tamoxifen in 2004, then letrozole, then faslodex. Now just the keytruda.
I actually communicated with one of the authors of that study at UCSF about radiation. He said that microwave ablations could conceivably also add something to the Pembrolizumab "effect." It seems to be unclear, though, how much that will work. Can't do anything about that right now. Cryotherapy is supposed to play well with immunotherapy as well.
PM me next week if you're so inclined, and I'll let you know how it's going. I expect to be knocked out for the 1st 24 hours.
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BevJen, hope the new meds are tolerable for you. Good luck!
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Thanks, Karen -- same to you. Changes, changes!
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BevJen – I've also been told that immunotherapy works better when used earlier. As you know, TMB-high is not very common in ER+ breast cancer. I had one biopsy that came back TMB-intermediate (8) and my MO took that as a positive sign that checkpoint inhibitors could work. The potential for a durable response is exciting! It would be nice if you could add faslodex to Pembrolizumab, but I suppose that insurance would not approve it. That's amazing that you were able to communicate with one of the authors of the UCSF study on radiation! I hope that the microwave ablations will make your liver mets more sensitive to the checkpoint inhibitor. I hope that Pembrolizumab will be very effective against your cancer with minimal side effects!!! I will PM you next week to see how you're doing.
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I have 2 questions:
1. My 2 measureable liver mets have slightly shrunk in 10 months on Xeloda. Has anyone had targeted treatment with same issue, ie, slow reduction of tumor size over long period of time.
2. Can you see necrosis on MRI and what would be the language in the report to indicate that?
Before I meet with my MO, I would like any real world input you can provide.
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Sandi,
re your question 2, I have had MRI reports after my microwave ablations that simply say something like: necrosis consistent with ablation. So I would assume, then, that would be the language that would appear.
I haven't seen, though, anything like what a PET shows, like SUV numbers. And again, this was only with respect to microwave ablation.
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SandiBeach
1. I’m glad you are getting some response to Xeloda. Shrinkage is better than growth. Are the SE manageable? I had a horrible time with HF.
2. My PET had no(zero) uptake in my Y-90 tumors and they noted that on my report. The later MRI said those tumors were consistent with previously treated metastatic disease and commented on the shrinkage.
At the MRI, I also had some growth of new liver tumors at the same time as death/shrinkage of the treated tumors. It’s hard to keep track of which tumors are which now because the radiologists don’t always comment on which quadrant the tumors are in.
Seems like Xeloda is holding your cancer from growing- If it were me, I would stay on it as long as it is working and the SE are tolerable. I would also get the local treatment done to reduce tumor burden. I can't remember, are you looking to get local treatment like y-90 or have you had that done?
FYI- The Contessa trial showed that low dose Xeloda+ tesataxel(oral taxol) had pretty good PFS results.
Hope your appointment goes well
Dee
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