How are people with liver mets doing?
Comments
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cwsterling Thanks for posting. Really helpful information.
Bev. Oh my goodness. What a mess you find yourself in. So sorry to hear and I hope you’ll have a plan soon. Glad you have IR options for liver.
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Oh drat Bev! So sorry to hear your latest update. I hope they get your pain sorted soon and get a game plan together for treatment.
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Oh Bev, I am so sorry for what you go through, but you are one tough cookie, so when you get things stabilized, a plan should come up to ablate these two suckers. My wife is already in the hospital and will have lymph-node resection surgery tomorrow. Multidisciplinary board decided that if all pathological lymph nodes are removed, she can stay on HP, if not, treatment change is coming. I know our surgeon is an ambitious man, so if he goes for this surgery, he probably believes he can do it. let's hope for the best... Saulius
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Mike, I'm so sorry to hear of these terrible troubles that Polly is having. Here's hoping that her old MO can find some ways to deal with these different tumor types and should be able to alleviate her pain. I'll be thinking of you both As you move forward.
As a silly side note to make you smile, Polly is the name of my beloved Basset Hound.
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BLMike if there is ONE thing I learned on here...its that even when things are pretty bad they always will feel better once there is a plan in place. I would imagine you both feel so displaced right now...having gotten use to the MO with the trial now in the waiting stage going back to the previous MO but once you guys have a plan in place things will definitely feel better. Even I feel better just starting the Afinitor, even though I know it most likely wont work or that as soon as I hit 10 days on it (3 days from now) my stomach may start rejecting the med and I wont even get a chance to titrate up to an amount that could even work against the cancer, I still feel better just knowing I am trying something.
Keep us posted.
BEV how are you today?
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Bev, I'm so sorry for your struggles as well and I hope that they can alleviate your pain soon. Like Dee, in the past I have had severe sciatica pain in my butt cheek, sort of like an ice pick, so it's possible that this is what's going on in that location with you, too. I hope that they can make you comfortable and keep you that way!
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Hey Nicole, regarding the Faslodex injections I wanted to second what someone already said about having them warm up the solution first, and make sure they inject it slowly. It also helps if you can walk around for a little while after the injection.
I had the best Faslodex nurse two years ago and was thrilled to see her again when I started chemo at my old satellite MDA location!
Best wishes for your new treatments!
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Kattysmith -- Thanks for thinking of us. Yes, that is funny about your basset hound named Polly. I'm sure she's cute!
NicoleRod -- Boy did you hit the nail on the head! It's the lack of a plan, lack of treatment, and feeling displaced, that's so tough to take right now. It feels like this cancer thing is just out of control, and we're doing nothing right now to even attempt to combat it. Getting a timely appointment with some of these MOs is problematic. On a side note, we are going to ask about Y90 when we finally get in to see an MO to pursue next treatment options.
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Katty thanks for the info but I have had faslodex injections already 2 years ago... WOW I just realized in 5 days its my 2 year mark from "official" diagnosis...hrmmm that sucks... Anyway my first line of treatment was Ibrance/Letrozole/Faslodex...I was one of the very few that had all 3 of those together...so I remember getting the shot...the thing is I was being treated at Columbia Univ. in Manhattan then..and so after the shot we would walk a LOT to get to the subway....so it was good...now thats not the case..I have a 30 min drive home..I will have to walk then
PS: I know its probably hard to keep up with remembering all my treatments...if we count 10 short days on Verzenio I am on treatment #6
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Mike, I hope Polly's surgery goes well with no complications. As Nicole said, once you have a plan, you'll start feeling better. It's the uncertainty that causes all this stress.
Bev, I hope today is a better day for you and your pain improves.
Update on my treatment plan - I had sent my MO a message about trying TRODELVY™ (sacituzumab govitecan-hziy) since it got full approval from FDA for TNBC. She has agreed and has put in an insurance authorization. Now I only hope the insurance doesn't give us a hard time and the approval comes in soon. I read about the positive experiences of many women who have been on this drug but at the same time it is not an easy regimen (makes me nervous about this!) .
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S3K5 praying insurance covers all
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S3K5. Good for you, advocating for yourself and educating the rest of us as we read about this TX. I have so much to learn about it.
What does “off label” mean? Does it mean I would have to pay for it? I know it’s not approved for ERPR+ yet. I know it’s an antibody but it’s considered a chemo or is it given with a chemo?
Sorry for so many questions but I’m trying to understand.
You said it’s a hard drug to take. I assume it has lots of SE, which ones are most common?
Thanks
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BLMike- prayers fo you and Polly to get through this rough spot and get a new plan that gives you peace. Storms are hard but there is calm ahead.
Dee
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Grannax2 and S3K5 my MO got approval very quickly for Trodelvy and insurance has covered it. The SE for me mostly are fatigue, nausea, low white and neutrophil counts, and hair loss. I have Xarxio (a GCSF) injections (at home) after the 2 treatment days to increase while counts. I don't tolerate Neulasta, so this is what I do. The nausea can be treated and I haven't had any intestinal SE or neuropathy, which can also happen. It's not as bad as A/C, if you have had that, but it's harder on the whole system than the other chemo I have done over the last 18 months. It's the first chemo to shrink any of my liver mets, all others just held it stable, so it seems worth putting up with!
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BLMike, if you and your wife want to find out if Y90 is a possible treatment for her, you may as well start working on getting an appointment with an interventional radiologist to discuss it. From what I read here, most MOs are not prepared to address this question properly. Some patients have even heard a No from the oncologist, but a Yes from the IR. In my case, my oncologist suggested I see her "liver guy" the IR at the same cancer center.
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cwsterling- I’m so glad you are getting shrinkage on trodelvy. Did you turn TNBC or is trodelvy getting some traction in ER/PR+ patients?
BTW-I can’t take neulasta either and gave myself the filgrastin shots when zI was on Afinitor. You do what you have to!!
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BLMike, very sorry to hear so much is piling up on Polly. Trusting a new good plan is coming her way. Hang in there.
My bile duct stent placement has been rescheduled for tomorrow. I'm glad since it's better timing for me. I'm feeling pretty good, but did have a vomit incident today. They hope to release me after the procedure recovery barring any complications and I'm feeling good.
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Bliss, sending good wishes for tomorrow
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Thanks, Moth!
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Bliss -- With all you've got going, thanks so much for thinking about Polly. One of the most important things we've learned from you ladies is to hang in there and that things typically get better once there's a new plan. We're waiting.......impatiently....for that new plan. So glad you're feeling better. Good luck with your bile duct stent placement scheduled for today!
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Pocket duty for Bliss.
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Bliss- hoping for an easy procedure with no complications and quick recovery.
Dee
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Dear BLMike, I don't know you or Polly but my heart goes out to you guys.
Bliss, I am so relieved the procedure is coming soon. Your optimism inspires us all!
Saulius
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Love you, too!
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Thanks, BLMike, Dee and Saulius for your well wishes, and I'll be looking for you in my pocket, Candy!
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Bliss is it for today or tomorrow? Either way pocket duty for ya lady! I have MRI of Abdomen /liver tomorrow so I will take you with me too
Bev how are you doing??
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just a quick pop in --
still in hospital; had pain reliever injected last night -- has improved pain in butt but still am bed bound for now as they are now checking out the head of my femur (In think on both sides -- who knows with all of these doctors popping in).
Had femur expats earlier today -- no results yet; no cancer plan yet; no release plan yet. Lots of no going on there, and it's very depressing.
Thoughts to everyone who is going through stuff -- like most to us. Hanging in there with you all.
Bev
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Bev, thanks for popping in. You have been on my mind. Hospitals are depressing to me too. And frustrating and lonely. Once I called the social worker and said can you please come visit me? One day all I could think of to do was to open the blind and see some sunshine. Do you have a window? Hang on, you will escape.
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Bliss and Nicole - open those pockets!! Will be there for you. 🙏🙏🙏🙏
BLMike- I am sorry for what you and your dear wife Polly are going through. This disease is like a bad roller coaster ride you just can’t get off! But sometimes there is peace and good days. They become even more pre ious. I pray for those days for you. Hope you get on a plan soon and can move forward, It helps
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Thanks Hope!!!
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