How are people with liver mets doing?
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Candy - I was diagnosed with one 9mm liver met over 3 years ago. They were not able to biopsy it at first. We could see it when I held my breath on the screen (ultrasound) but then I would breath and it would be difficult to see. So then I went to a specialist and said I wanted microwave ablation for my liver met. The ablation was approved. I asked to have a biopsy at the same time, and I was able to get my biopsy at the same time as my ablation. My liver has remained clear for for over 3 years (not my lungs tho). I don't know if the microwave ablation would be the best local treatment for you but as others have said, they may be able to biopsy the liver at the same time you get local treatment. ~Kar
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HopeandGratitide, my SRBT went smoothly. Took naps due to fatigue, but fine now. PETCT in 12 weeks..hope nothing else is growing in the interim. My CA15.3 alerts me with a shift from baseline.
A bx was attempted when fiducials were placed in liver, but lesion could not be accessed.
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Nicole,
I recently lost my beagle that was my companion for 15 years. So I understand what you are feeling. I to struggle with getting another pet because of the cancer.
But she is adorable. I hope she gives you great comfort. Dogs are wonderful friends!
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Dear Candy, I think lesions of that size are perfect for ablation (whether microwave/gamma-knife, cryo-ablation or other). It is interesting - they seem to be very separate, like in-situ, so treating/curing them might kill it all in the liver, I mean... who knows, right? Saulius
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Thank you all for your responses to me. I have a lot of information now. I am rereading your posts and taking notes. And making a list of questions for my MO.
I see my MO April 19 and I am going to be ready with questions. I will keep you informed. And have more questions, I am sure.
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Sandi - Good to hear on the SBRT and your recovery was ok. Fingers crossed it did the job. Too bad on the biopsy but you made ever attempt! I go for a biopsy tomorrow on the larger of the two tumors (2cm). Waiting to hear about scheduling for mapping and Y90. Can’t wait to have them gone. Of course my mind drifts to when the next ones appear but I stop it from going too far.....
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moth: I was trying to find your post about the covid jab here in BC. I got a letter in the mail today saying I qualify for the jab because of "ongoing treatment for cancer" I can call and book on March 29. That's only a few days before my age group cohorts qualify but what the hey --- I'll take the offer!! Have you received a letter yet? I think you should be getting one.
What a miserable year for us, the world..................
Liver mets: yeah, they suck. Big time. It is good news when things are stable and then there are the Liver Met Sisters who are still with us 8, 12 years out. We all can but hope. We pray our scans will be positive. Hoping for all of you/us!
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Elderberry, I haven't got my letter yet but I'm hopeful now that you got yours, mine must be en route! Did it come from your dr office or phsca or bcca? just curious
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Yes Elderberry. Would love to know more. I’m anxiously waiting but websites indicated the letters just went out today which is clearly not accurate. We all know Canada Post never works that quickly. Lol.
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Thank you all that sent me well wishes with the puppy.
It is literally pain-ing me to have to say what I am about to say but I think I have to stop the Verzenio and I am only on the 2nd week. My stomach is KILLING ME!!!!! I am already taking protonix and pepcid AC and pepto bismal....its still hurting sooo bad. I am so scared of what I am gonna do. I am also postitive it is not LOW ACID because when I burp it does feel better...
Also I believe that my liver is enlarged from the Y90....and I don't know that, that will ever get better. When I breath it hurts bad and presses into my ribs.... I just really feel like I am running out of options now because my body is not able to handle anything. I sent a message about all of this to my MO....
I wasn't even gonna come here anymore bc I feel like I am just complaining.
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moth and Sadie: It came from the Provincial Health Officer.(signed Dr. Henry) The letterhead was just British Columbia. I was identified through Fraser Health (my local authority). It was dated March 24 - which is today so did it pop through some wormhole? It came in the mail. No postmarked date. Return address was 300 - 1333 West Broadway. You should get yours soon.
Nicole: this is the go to place to complain. Don't leave!
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Dear Nicole, please complain here, where else can you complain? We are all in the same boat - we all complain here, because only here we have people who understand us. Please don't take rushed decisions regarding Verzenio - talk to your MO about reduced dose and maybe some probiotics for your stomach bacteria? Saulius
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Nicole - we are here for you! Don’t rush to conclusions on the verzenio. I know it causes abdominal issues (diarrhea etc) but not sure how the pain you are having fits in with its SEs. I too have painunder my lower right rib cage since starting CDK inhibitors (Palbo) but it’s not liver related, the docs think maybe gall bladder, but it’s not severe pain and it is intermittent.
I pray for your pain to resolve and for you to find some peace during these really difficult times. I know your faith. Keep pressing in to the Lord.
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Nicole, dogs are angels on earth and Ayla certainly fits the bill! What a precious baby, and you will have so much happiness together!
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Saulius I take probiotics.
Hope. I have had this liver pain since the Y90 not since the Verzenio
I literally do not want to take the pill today I am in so much pain.
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Nicole- Wait to hear from your MO. Like BSandra said, maybe a dose reduction? Or something else to help the stomach? Do you have Palliative Care that could give suggestions? I just hate to see you stop the Verzenio altogether. And keep coming here. We will try to help you any way we can.
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Nicole - please wait to talk to your MO. The verzenio may not impact your pain one way or the other, so maybe no reason to stop it.
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Nicole,
I second that you need to talk to you MO first before discontinuing the Verzenio. Hope makes a good point -- the Verzenio may not even be impacting your pain at all -- and so why discontinue it? Also maybe shoot the pain management doc a note and see what have to say.
You also said that you know your liver is enlarged from the Y90 -- has it shown up as enlarged on scans? Try not to self diagnose based on what you think you know -- this is again one time you need to talk to your MO and maybe your IR.
I hope you can find a solution to your pain. This has gone on far too long. Thinking good thoughts for you.
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Nicole, really sorry to hear that you are having continuing stomach problems and that you suspect it is the verzenio. I agree with talking to your Oncologist, and if you really do suspect it is the verzenio, then I would test the theory by taking no more than a week off, and seeing if that brings you relief. I wouldn't give up on it permanently, but test to see whether it comes and goes with the verzenio. As others have suggested, if its not the verzenio, then it would be a shame to give it up.
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Thanks for all your replies..I absolutely could not take the dose today. I was in so much pain I almost had to go to the hosptial. I chugged down more Pepto and I am back to about a 6. I know its the verzenio bc this started yesterday after I took the morning pill...then finally after hours of pain I started to feel a little better then it was time for the night dose ..took it ...and a 45 min later pain again bad.
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Nicole,
Again, so sorry for the pain. Did you try to call your MO? I think patient portals are great, but once you send your messages through them, then your message is lost in the great internet abyss until you get a response.
Also, perhaps there is something you can do to manage your food intake with the pill. I believe that Verzenio can be taken with or without food. I take some meds for other stuff that say that. But if I don't get something in my stomach shortly after taking those pills, I feel terrible. Even a few saltine or graham crackers can help. I'd ask about that, especially because you know that you are sensitive to a lot of meds.
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Nicole,
In my opinion, I don't think you should be taking Pepto Bismol. The chemical name is bismuth subsalicylate which is a derivative of salicylic acid which is also aspirin. It has anti-inflammatory & bactericidal properties. So, you are irritating the lining of your stomach as well as decreasing the bacteria of your GI tract. Do you have ringing in your ears? That & abdominal pain are classic symptoms of salicylism which occurs when you take too much aspirin or Pepto Bismol.
Try using Tums when you need some immediate relief. If your stomach looks irritated or ulcerated on endoscopy there is a prescription medication you can use.
Good luck,
Jane
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Nicole, just letting you know I'm thinking of you & hoping you find some relief. Do keep coming here to complain -- this is the place for it. We get it.
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Thanks moth...Jhl....I am on a perscription med already Protonix... I do not have ringing in my ears.
All I am already on a reduced dose. 100mg
Bev I take it right after I eat. They say to take it with food.
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Nicole- Pardon me, but basic question. Do you have a GI doc? Not a cancer doc, but a basic GI doc. Just saying. Maybe they could help with your stomach issues. If you are using Protonix scheduled, Pepcid as needed, and Pepto and still having issues maybe some other prescription med for the GI system would be good. Maybe would work a different way. You mentioned belching and the pain eases up. Maybe something for gas, air, motility. IDK. Just asking. Thinking out of the box.
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Nicole- sending a giant online hug that doesn’t hurt 😉
I care that you are having so many issues again. please call your MO to tell her that you stopped Verzenio.
Prayers for renewed strength and hope
“Hope is being able to see that there is light despite all of the darkness.” Desmond Tutu
Dee
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My MO knows I stopped she is calling me later today.
Candy I have a GI doc and called. They are calling in this pink stuff (forget the name) its suppose to coat stomach and help but I have used it before and it didn't. If it doesn't this time they said I will have to have a telemed appt to discuss. They are thinking it might get better now that I stopped the cancer med
I have been off all cancer meds for 3 months and only on this for about 10 day so going off today is not gonna make that much difference...its not like it was already working. My concern is that now...because of the damage done originally from the Eribulin (which I didn't know I thought no big deal silent GERD (no pain) I just would lose my voice) then the Y90 exacerbated that ...now I feel ANYTHING is going to cause me tremendous pain.
. If that is the case my fight is done. I cannot live in that kind of pain.0 -
Nicole- Pink stuff probably Carafate. Coats the stomach, yeah. If it doesn't work this time, and it may work, then get appt and discuss. I would think there would be something they could do/give to allow you to take your cancer meds. I want to fight for you. Your cancer was doing good, right? I thought I read that last scans looked good. So we need to get your GI issues controlled so you can continue on the cancer meds. Don't give up yet. Gentle hug from here.
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Nicole - Holding you in my heart ❤️. I pray that the Lord guides the doctors in their efforts for finding a solution that willallow you to take your cancer medications and free you from your terrible pain. Don’t be so sure it’s time to give in.
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Hugs Nicole.
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