How are people with liver mets doing?
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ShetlandPony, I am sorry that you are going through so much right now. MBC is a cruel disease.It is normal to be scared in this situation, but you are strong and have a good team taking care of you. On top of that you have all of us here pulling for you. It sounds like things are well planned out. Before you know it you will be back home to complete your recovery from surgery. As soon as the time is right, you will resume your treatment and keep going. You are in my thoughts and prayers for a speedy recovery.
Hugs and prayers from, Lynne
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ShetlandPony- My thoughts and prayers are with you. I pray the surgeon can remove the cancer and blockage easily and you will heal quickly. Post when you can. I will look for your updates. Maybe a PARP like I am on will be in your future-- LOL. Hugs
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Shetland, so sorry to hear about the blockage as well but I am relieved that you got to the bottom of the issues. As others have noted, you are in good hands and we are all in your corner wrapping you in virtual care. Sending a big hug!
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You guys are making me cry in a good way -- I feel your love and support, and it really helps me. Thanks for the encouragement, prayers, advice, and wisdom.
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Shetland pony- <HUGS>wow what a crazy turn, but prayers that it all gets resolved. You have a bunch of awesome encouragers here pulling for you to get great results with minimal pain
My only advice is make sure and ask what you can take to keep the bowels moving since when you take narcotics it tends to stop you up. Sometimes the pain pumps are not enough (my hospital did away with them) Be brave and ask for what you need.
Dee
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Shetland Pony, I’m adding my wishes that your surgery goes well and the blockage is cleared. You have a big cheering section here! 😊😊😊😊😊😊😊
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Hello everyone.
There is so much going on with all of you, so I don't want to hijack. Other than to say I really appreciated everyone' support and advice. The collective wisdom here is amazing.
To give a brief update, as hearing other's stories is sometimes useful...I saw my Onc today. It was kind of an odd meeting. My bones are happy and stable, but liver has lots of little new lesions. I am on my way to the UK on Tuesday, so he wanted to tide me over while I am away and as we make a concrete plan, so offered Verzenio. I pointed out that as the progression happened in Ibrance, that might not be the best.
He then said categorically no to A/A based on toxicity.
Then we settled on a low dose of Xeloda for now (500 2x day) as we wait to see if I can get on an oral SERD trial. He said if I don't get on the trial, he can increase the dosage. At first he said the HFS would make it hard to ride my horse. When I said that was kind of a deal breaker, he backtracked and said it would be fine. I also said I probably need to grow up and admit I have cancer and quality of life is not a given anymore.
The trial was kind of my idea, but I had to really push to suggest that we test the new spots to make sure they are still ER+, otherwise a SERD trial would be for naught. So we are looking at a blood biopsy on Monday and, if the radiologist can do it on my small lesions, an actual biopsy.
I asked re y90. He said we want to deal with whatever is traveling around in my blood looking for its next place to roost, then we can worry about local treatment. That made sense...I guess...
The whole meeting did not fill me with confidence. He went to med school, All I have done is read lots of posts here and on another board , yet I felt like I was driving the meeting and the treatment direction. (Especially with the whole Verzenio detour...)
I guess I will get the blood biopsy, start Xeloda, go to UK, come back and reassess. Maybe a second opinion.
Anyway, It sounds like you all are frying much bigger fish...
P
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I am stopping by after a long time and trying to catchup with all the posts.
Dee, so sorry to know about your stepmom. My condolences to you and your family.
Nicole, how’s your new treatment going? What are you on?
Bevjen and Lynne, what treatments are you both getting?
Since July, I have been on Keytruda + Gemzar and Carbo. From end of September, I am getting only Gemzar+Keytruda.
I hope this combo works since I am clearly out of options.
Thanks everyone for your support and information.
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SP- hugs, thinking of you- I hope the tube feedings give you good energy to get through the surgery and sending you virtual peonies.
PBsoup- hope the Xeloda gets you what you need until your next step- lots of info on the Xeloda site re HFS- mine went away with dosage decrease and 7/7 schedule.
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Shetland - just want to add my wishes for quick healing and full resolution of your intestinal blockage. The things we have to do! You are strong and we are all here with you. You can do this.
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Dear Shetland, I am late to write (time difference) but I am absolutely amazed by your team. I pray the thing could be cut-out and that you can continue on the wonderful combination with neratinib.
Our news: PET sees nothing, except for one/two lymph nodes that are 5-8 mm, SUVmax=1.7. We want to cyberknife them, let's hope that they can.
Saulius
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Saulius so happy for you both!!! AWESOME NEWS.
S3K.....I havent moved yet still on halaven don't believe it working I have consistant pain in liver..its no wonder i am only on 50% dose due to side effects this time... PET is Thursday the 18th.... either go to taxol + keytruda or Trodlevy...my MO just messaged me this morning and said she feels both treatments would work well..and it really doesn't matter which we go with bc I will probably have to try each one when one fails...so the order we pick doesn't matter.... I am torn and do not know what to pick..... sigh..... She said she would start both at reduced dose (bc of me with side effects)
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Dear Nicole, "she feels both treatments would work well"... what wonderful words those are! I pray for you often and believe that you with your team and amazing support by your family can find a way! Uh, I met none of you but... I really love you all.
With all my heart, Saulius
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SP, I'm holding you in my heart today and hope the surgery brings about much greater quality of life!
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S3K5,
Good to hear from you. I hope your current treatment works well for you.
You asked what I am on -- and PBSoup, this may be interesting to you as well. I am currently on xeloda and neratinib. I haven't been on them for very long -- only since the end of June. Xeloda and I do not agree, so they've now got me on 450 mg two times a day (so just slightly less than you, PBSoup) with one week on, one week off. I take the neratinib every day, but I am on the lowest dose of that. Initial results were pretty good -- markers dropped significantly -- but not sure if the combo is still being effective at its current strength.
Saulius, I just have to say -- you are such a cheerleader for us all. You are right when you say to Nicole -- there are two treatments you can try now! The power of positive thinking! And great news on your wife -- I hope the cyber knife works out to get rid of the little suckers!
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Thanks Saulius you are so kind
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S3K3- good to hear from you and yes hoping the treatment works!Saulius- hoping you can get cyberkife to whack-a-mole those little burgers
BevGen and Nicole-hoping your treatments are still working. The wondering doubts are so hard.
Update- I did not qualify for the CERAN study. There are 2 other trials at SCRI that I am looking at and waiting on to hear back. So hard to be patient. I would be first-in- human on one study-another new SERD. My local MO said I should consider it- I would be a trailblazer! Love that guy. Hoping I have a choice. I have feelers out at Vanderbilt, Moffit in Tampa and MDACC. I do have some standard of care options if no trials are available.
HOPE is my focus today!
Dee
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AlabamaDee,
As my MBC friend, Lisa, told me, "Hope is nature's most sacred and powerful medicine!"
Big hugs, Susan
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Shetlandpony, my thoughts are with you. I am glad they will address your colon mass.
I am just out of hospital for ascites, abdonimal issues..and hope to return to my life.
I dislike being confined to 4 walls. Sympathize with you.
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A quick report, dictated for DH to type, as I have not been able to sit up yet: The surgeon tells DH that surgery went well. She was able to do a resection (tumor out, ends reconnected).
Sandi, I am glad you are home. I totally get the four walls thing. One way or another I hope to go outside for a few minutes today.
I will post more later.
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Shetland- Glad to hear that the surgery is over and went well. Now, the recovery. Hoping it will be smooth and you can get on to the next cancer treatment to get things more stable. Post later. I will be looking for ya.
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SP,
So happy that you got through the surgery and that the tumor was removed and that the surgeon was able to successfully reconnect the ends. I hope you have a swift recovery from the surgery, and that you are not in pain.
Rest up and we'll wait to hear more from you.
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Shetland—Hooray! I am glad the surgery was successful and hope you feel better soon. Onward! 💪
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Shetland, Glad to hear from you and that the resection went well. Now the healing and recovery can begin. 🌺
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Shetland,
You are so brave! So happy the surgery was successful! Wishing you a speedy recovery.
Hugs, Susan
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Shetland, what good news! I hope you feel better, heal, and gain strength every single day!
Katty
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Shetland, so good to hear the surgery went well, take it easy and give yourslf time to fully recover. May the next step of your treatment plan be as successful.
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SP I knew you would do well !!! AWESOME!! Just get lots of rest now.
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Can I get ya'lls input....
I just met 2 women on FB that are taking Trodlevy + Keytruda both are like me... TNBC, PDL Negative and BRCA Negative....1 is being treated at Cornell in NYC and the other at Dana Farber... I remember my MO said I cannot get immunotherapy unless its paired with a taxane chemo?!?! Apparently that is NOT TRUE! I am wondering if this is bc my cancer center is NOT Nationally Accredited???
I sent my MO a message telling her about these women and asked if I can get T + Keytruda.. but if she says no I feel I may have to consult somewhere else bc I am feeling that is what will be best for me!!!! I feel it in my gut..I don't know what to do? How do I even consult somewhere else?? I mean my liver scans no one except my IR in Washington DC can read properly bc of the Y90's and Cryo....iI just feel so overwhelmed?
Any advice?
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I’ve been out of the loop for awhile. My mind has been totally occupied with trying to get into a new trial at Mary Crowley. Yesterday I went for a very intense four hour appointment. It was the screening/ acceptance part. This is my first ever ct and I’m still in shock about how strict they are. I can even not be accepted because some of the medications I take. Who knew? They did tons of labs and CTs of chest, abdomen and pelvic. I have a brain MRI next week and I have to have a liver BX. All done before Thanksgiving. My tentative start date is November 29th.
Basically, they will do infusions of Herpes Simplex Virus ( HSV) to try to activate my immune system to fight my mets. It’s a First in Human. I felt like I was signing my life away yesterday. Crazy day. But the trials in animals are encouraging.
It’s called ImmVira Ph 1/2 T3011 and it’s MCMRC IRB #20-21 I’m on the study drug only Some people will be on the study drug and Keytruda
Meanwhile, my liver is showing signs of being stressed Numbers going up, TMs going up, etc I haven’t had any TX in four months So, that’s not surprising
My biggest concern right now is that none of these scans and labs will bump me out of this trial I seriously don’t want that to happen I do not have any good options left
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