How are people with liver mets doing?
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Great news this morning, the switch from palbo to abemaciclib continues to work. Drops in CEA and CA-15 of a further 45% and 35% since her last markers in early February. No progression on the scans, but lots of stable but ambiguous things. The blood testing she is being sent out for is genetic testing. I believe they will be looking for the pik mutation among other things.
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Thanks for the info,about fen benNicole. So, you are on to Affinitor? Let us know how it goes.
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Husband11, great news! I'm curious about the "stable, but ambiguous" findings. My MO was originally talking about sending my biopsy tissue for genomic testing, but then said we didn't need to do that now, since this treatment is working so well and we don't need to make a change. When we need to change treatments, we'll reevaluate. The only reason to test now would be to satisfy my curioisity, I guess.
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My wife's liver has pseudocirrhosis. It's not cirrhosis, but it has that appearance. It's the result of diffuse cancer mets. The diffuse cancer in one lobe messed up the appearance so badly that it will always look messed up and wavy at the periphery and full of scar tissue. Also her spine has some spots that aren't changing, but they can't say exactly what they were or are. As well, her peritoneum has thickening that they can't identify what exactly happened or is happening, other than that all this mess is staying static. Her spleen is permanently enlarged from the hepatic hypertension, and many veins are dilated. She has regular endoscopy to look for varices in her esophagus that might bleed. Luckily there have been few lately. Internally, she looks a bit like a battlefield.
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Husband soooo happy for you both!!!! Awesome!
Grannax...will go to Afinitor Dr. wants to wait to start till our appt on the 8th, my spine MRI with sedation is the 7th....
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Husband,
Happy that the Verzenio is working. That's great.
I often wonder what all of these drugs do to our insides. Now I have an idea. So long as all stays static or decreases, then all is okay.
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Husband, glad you're going to get the genomic test but I'm super surprised as it's expensive and I've not heard of provincial cancer agencies paying for it - you're the first. I had mine done through a clinical trial & I know other Canadians who have paid out of pocket for theirs. I'm hoping you are the sign that provinces will start covering this for mets pts.
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Moth, apparently it is being offered for free from Contexia, a BC company. The program is ending soon and she had to get my wife's blood in before the program ended. She said there was no limit on the number of tests offered to each hospital. Now approx 4 years ago, a company called Contexual Genomics out of BC was offering free testing, but we asked our Onc at that time, and he said that only a limited number of tests were being offered each province and that the Oncology board of the hospital has to make sure they went only to the best candidates. This sounds like the same company, but the eligibility sounds completely different that was explained to us previously. If someone in Canada wants this, get on it ASAP before the program ends.
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Thanks Husband! That's excellent. I hope you get actionable results.
I will spread the word. Mine was through Foundation One. It's over 6K for liquid and more for tissue...
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Husband11, you're right, that is a lot of ambiguity. I guess "stable" is the bottom line and that's good.
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Thanks Husband. Very interesting. Unfortunately, it looks like the program is ending tomorrow which probably rules out getting access. Perhaps they will extend? At the very least, it might prove to be a cheaper test than Foundation One. I appreciate the heads up and will discuss with my MO.
Edited to add for those searching for it the new name of the company is Canexia and the project is the ACTT project.
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Brain MRI is clear!!🙌🏻
Bone density dipped into osteopenia so increase D3, calcium and weight bearing exercise. (I can't take bisphosphonates due to upper jaw issues.)Mag is stuck at 1.6 while on 8 pills of slo mag per day. Will check again and get a "top off- booster" to see if that helps my leg pain.
Hopefully I can rest easy until April 19 trial scan & plan.
I know many others are getting scans- will be with you in spirit. 🙏🏻
Dee
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Dee, that is fantastic! So happy for you!
Have you considered the supplement, lactoferrin? It builds bone, and has shown some anti cancer activity. It's also fairly cheap.
Sadiesservant: Looks like Contextual Genomics was renamed Conexia Health. I wish I had known about the program and the possibility it was ending sooner so I could have let people know. I only found out what test it was and why there was a rush, this morning. First time we've had the opportunity to talk with the Onc in quite some time. Prior to that it was my wife talking with a nurse, who really didn't know any details, thus the vague description "molecular testing".
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Dee - YAY!!! GREAT NEWS!!! Breathe a little easier today
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Dee YAY!!!! So so so so so Happy for you!!!!!! Also which drug made your Mag tank again, verzenio???
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Dee, Yay! for the clear brain scan!
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Dee,
I know this scan was weighing heavily on your mind, so I'm so very happy for you. Take a deep breath.
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Great news Dee!
Husband, totally understand and really appreciate you flagging this. We may still have a chance and it may be a cheaper option.
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Dee- Congrats on a clear MRI.
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Dee, Fabulous news in your MRI! Congrats!
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Alabama - congratulations on the clear MRI!
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yay Dee snd husband.
Tomorrow I have my PET scan to check on that abnormal lymph node in my chest.
Also found out today that the shoulder pain I have been experiencing is just frozen shoulder snd calcium deposits in my tendons. Time and exercises should take care of it over the next year or so. I will probably get a shot next week to help with the pain ( evidently I am in one of the more painful stages of frozen shoulder).
Thinking of all of yo
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Thanks everyone.
LFF-hoping you get a good report and some answers. Frozen shoulder arg. I gave responded well to many steroid shots over the years. They have kept me from spinal fusion surgery. Hope you respond.Nicole- Afinitor was the culprit for my mag issues and I am still fighting my way back even though it has been several months off. I’m thankful that slow-mag pills are maintaining the low normal with no D. I tolerated Afinitor well with good QOL and consider the mag issue minor.
Husband-I will look into lactoferrin with my trial MO. I had not heard if that. My osteopenia is mild right now.
Lots more here having scans- hoping for good reports. You all are such a terrific group who encourage me when things are so tough!
Dee
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Dee, Husband11, great news, congrats!
Husband11, we basically have same issue: after first 3-4 chemo therapies liver was resolved (my wife was de novo stage IV) and stays "same", and with "small scars" on ultrasound, but absolutely clear on MRI and CTs for past 40 months. Liver echo-geneity is very good, all liver parameters are always perfect, bc markers are all below norms. Ultrasound specialists say: probably scar tissue.
We still wait for the biopsy results of that II level lymph node. Why does it last so long (8 days already!)?
Saulius
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Dang, biopsy positive in that lymph node:/// Now on to whole body CT, meeting with the surgeon, etc. Oh man, how tired I am of all of this... Saulius
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Left, I have experienced both frozen shoulder and tendinitis (in different shoulder) with calcium, twice in the one shoulder and once in the other. I had a cortisone shot twice for the tendinitis ten years apart. It was amazing how it helped. That pain was excruciating. When I got frozen shoulder I had a shot, and it didn’t do much. I didn’t do any treatment really for it, and after about a year, I’m finally able to raise my shoulder. It never hurt while it was down, which I was very grateful for. I probably should have done some PT. It still hurts, but I’m actually able to lift it almost straight up. That calcium on the shoulder is very painful. I hope you can get some relief soon.
BSandra, I’m so sorry it was positive.
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Saulius,
I am so sorry to hear of the positive biopsy. But -- maybe it is the lymph node catching the cancer cells and hopefully that's it.
I am thinking of you, your wife, and your little boy, and hold you all close in my heart.
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LFF - in your pocket for PET scan tomorrow. Praying for good results.
Saulius- sorry to hear biopsy results positive on lymph node, but praying it’s just the node!!! Hoping full body CT is clear. Not PET? I hear you. We are all so tired.
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LFF glad it wasnt mets in Shoulder...in your pocket!
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Candy, about getting results of genomic testing: I went to the company’s web site and created a patient account. This allowed me to track the progress of my test and see when my results were in and read my report. To see it the soonest, the doctor has to “release” it which means you may need to contact your doctor or nurse and ask them to do so. I think they just have to go online and click a button or something, so it should be no trouble. After a certain time period it is available without that step.
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