How are people with liver mets doing?
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Thanks BevJen! I will think about getting another opinion. My MO is normally really good people-wise which is why hearing like this was such a shock.
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rbnotes. Grrrrr that makes me so mad. I can identify so easily with how shocked and appalled you were with that unprofessional person. Obviously, she has never had cancer. I'm glad you put her in her place. Tell your MO what happened, too.
I was absolutely thinking faslodex was not going to work. I fully expected I would have to change TX. You are so right scanxiety was off the charts because of COVID. I was a basket case but I got good news. I'm so so sorry and scared for you as you face whatever is next.
LFF. Those are not easy choices. I think I would risk being with my husband, ER doc or not. I KNOW I would not be able to handle everything for four kids and cancer. I'm 72 and a widow with grown kids so I don't have to make the choice. I wish you didn't either, it's too much.💞
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So I had MO visit today by phone (I am trying to set up camera for video calls, but not done yet, so audio only). I told MO of the right sided discomfort. I explained where since she couldn't see me. She said liver met is small (on last scans) and she doesn't think that would cause it. She will see me in office in 1 month and if I feel worse to call her. I don't really like this remote visit thing, as she cannot see where I am pointing and she cannot palpate/ assess the area.
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My MO was not happy at all about the phone call I received. She agreed that never should have happened, & she was going to pursue it. We looked at & compared last 2 petscans. There is progression in liver &2 lymph nodes but everything is still under the size of a quarter. Because of all the dose reductions and low count issues on Gemzar, she thinks it is time to move on. So, started Halaven today. I saw bbpie was on it. Does anyone else have experience with it?
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Nancy, I am glad to hear that your onc understands and will follow up regarding that phone call. My Halaven experience is not an encouraging one, but you know what they say: Everyone is different. I had a short course of Halaven/eribulin and it did not agree with me. I felt unwell and had fevers, and it did not work for me. It did take about 2/3 of my hair, which is not typical. There is a thread here called Halaven - Day 1.
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Leftfootforward, this is terrible that you and DH must live apart. It makes me so sad. How much can one woman do? Apparently a lot, as you have already shown. But wow you guys deserve a break. I will PM you about some kid stuff.
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Thanks Shetland - I'll look for that thread. Sorry to hear that it didn't work for you.
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Halavan wasn't good for me either. Allowed my liver mets to grow and bring along some friends. I had bad neuropathy in my feet which is getting better but boy that was a bad SE. Also heartburn like I've never experienced before. As Shetland mentions tho, we are all different. I did great on Ibrance for 30 cycles and some can't get through a few cycles. So try it for sure. Fingers crossed that you are one of those who does great on it.
I'm now on weekly Doxil and find it very do-able, whether it's working or not, today we find out.
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Nancy, I got 6 months out of Halaven. The first 3 months were rough, but I was coming off dose-dense Taxol which made for a rough start. After that I dose-reduced and the last 3 months were quite tolerable. Pajim got I want to say 9 months out of it. I did experience neuropathy in hands and feet, but was vigilant about icing. Good luck and I hope you get many, many months of the tx.
GG, sending prayers for good scans.
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Sorry for confusion...it's the way this gets posted sometimes. I was responding to the posts regarding pain that seems to come and go, under right ribcage etc, that does not seem to correlate with anything.
With regard to tumor markers, mine have been fairly consistent across the board as they have all dropped as the verzenio has been controlling the liver mets quite well (THANK the good Lord) as a "complete metabolic response". But then just had single bone met pop up on L2 with no change in markers. Not sure if any or many to follow. Biopsy shows liver met to have same receptors/markers as liver tumors. Going to have it blasted and then start on xgeva.
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HopeandGratitude,
Onward with the blasting! I'm a fan of that.
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I have been told that all appointments at my cancer center have been cancelled and the nurse called me to let me know they are postponing scans too. I have been off Chemotherapy since 1st Jan2020 and have been taking Femara. It was supposed to be a temporary chemo break. I am getting concerned about my scan getting postponed since I had multiple liver Mets that were stable in Dec2019.
Anyone else in a similar situation? I think my appointment with my oncologist may also get postponed.Hope everyone is safe and being careful
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S3K5, Is there a nurse with your MO you could talk to by phone? Maybe you could be given a short term plan by him/her or your MO? I can understand your being concerned. Not knowing what’s ahead in terms of treatment or appointments has to be stressful. Could it be your hospital is dealing with virus patients and they want to keep cancer patients out for their safety? Seems kind of backwards to keep them from treatment/tests though.
I did have scans this past Friday and have a “virtual visit” with my MO next week. There could be many different protocols being used in different cities. I hope you get some more information. Please let us know what you find out.
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SK, just reread your post, could it be your MO deems you stable enough to postpone things for a few months? I see you’ve been dx as MBC since 2013.
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Rosie24, I go to Memorial Sloan Cancer center where they see only cancer patients. I have had bone metastases since 2013 but diagnosed with liver Mets in 2019. Generally the oncologist at MSK cancer center have been very aggressive with the treatment plans. It is surprising that they are postponing the appointments and scans. I spoke to a nurse today who told me that I’ll be notified if my scan gets postponed. They have my medical history. I guess I’ll have to wait and see.
Hope your scan show positive results. All the best!
I was on Ibrance/faslodex for almost 18 months before moving on to next regimen.
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I am assuming that the postponement is due to the viral cases in your city or area. I hate to say it, but it’s probably safer for you to wait as hard as not having tgat knowledge of your current status is. That being said, if it’s really important to you call your team and push for the scans. It’s your right. At least they will give you a reason.
Hang in there.
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I had blood work 2 weeks ago, but was notified by MD Anderson that my next appointment with my MO would be in 2 months. I am due for my 3 three month scan now, but it looks like that will be postponed until right before my doctor visit. I'm not anxious about it (yet, anyway), as I tend to be an under reactor.
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I had to go this week for my biliary stent exchange. This was my 4th ERCP for this. I do it every three months. Everyone was masked but I heard a nurse at the nurses station coughing, which made me really nervous. WTF? Next week I have to go for Faslodex shots, and the following week for Herceptin infusion. Supposed to have scans soon. I think they are unlikely to be canceled since I am on a clinical trial. We’ll see.
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shetlan- you are a trooper. I hope that the new shunt continues to bring you relief. Glad that person had a mask on but hope they send them home if cough continues.
I was just at the hospital yesterday getting my brain mapped for cyber knife radiation treatment.! It was a weird environment. I hate wearing masks and yet when I had an I reaction with a person not in one, I was uncomfortable. I goes when everyone is wearing one and you deal with someone who isn’t doing the same thing, it illicit this response.Anyway, I have a perfect mask of my face now had both a brain ct snd mri done as Nd am now awaiting my start date. I figure mid week next week, once per day for 5 straight days.,I will drive myself as it is a ghost town at the hospital and out stay at home orders were just extended t
Until May 4th in WA state.
Stay safe and healthy everyone.
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Shetland. I'm sorry you're going through all this AGAIN but at the same time I'm glad they didn't cancel any of the procedures and TX you need. PTL
LFF. I know about the ghost like hospitals. My Dr son says it's sooo weird. You are a tough cookie to be staring cyberknife in this environment.
I go tomorrow to my ghost like Cancer Center. This will be the first time I've been to the chemotherapy floor since March 9th. Yikes so much has happened since then. I wonder how different it will look in only one month. The waiting room is usually packed. I'm only getting labs and Faslodex injections. I bet it won't be as packed tomorrow. There won't be any Dallas traffic to worry about either. 💞
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I mean who even says “Getting my brain mapped for Cyber Knife”? What kind of strange sci fi movie are we in?! I talk about my regular stent exchange as if it were a hair trim. Come to think of it, it’s the same schedule. Except now I can’t go get a hair trim.
My cancer center is very quiet and sparsely populated, with short wait times. I pursued getting this stent exchange sooner rather than later because if it were to get infected and I got a fever, it would be so complicated. And I wanted it done before things get crazy, supplies are low, staff is out sick, etc. Now I’m good for three months.
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Shetland- I know, a sci fi movie. I read everyone's posts and think "God they are so strong". A stent exchange every 3 months, trial meds, cyber knife mapping. Will I be that strong when I progress? I love you all.
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Hi fellow liver metsers.
In just 3 short months, my MRI showed widespread liver mets. So, will go to Xeloda next. My MO wants to hit the "spots" fast and hard. Once stable, my MO will switch me to Faslodex and Verzenio. That is the plan, we will see.
I know you can function with a small percentage of liver, but I wonder how much will be left when all these spots now and from 2016 are just dead areas? My MO said the spots will not regenerate for me.
Anyways..here I am. Getting diagnosed all over again. News is harder this time.
S
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hang in there Sandibeach. Livers are resilient and so are you. Xeloda was a life saver for me. It is a drug that has helped many.
We are here for you.
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Sandibeach, Sorry for the bad news you got. Have you been stable since 2016? No matter what, I'm sure this is a shock to you. I hope the Xeloda goes in there and knocks those mets out of the park!
(I just saw your Ibrance post, 43 cycles is a long time! I’m in your corner for sure 🌺.)
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Awww..thank you LFF and Rosie. I had AC Oct thru Dec 2016. Once stable, I went directly to Letrozole and Ibrance. Had a good run and was NEAD up until today!
I am numb. Don't know how you guys handle progression/treatment/progression cycles. How do you keep going mentally? Guess you have no choice..just get up and live out your day and be happy. LFF..you just amaze me: work, kids, treatments, now single handedly in charge of household.
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Sandi We have meltdowns Sometimes, it's too much. We talk to each other, try to calm down and do the next first thing. We also learn from each other.
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Sandi- Sorry to hear of your progression. You had a good run with I/L. And hopefully you can go to Verzenio and Faslodex after a time on X. Keep us posted on here about how you are doing. I know there is a Xeloda Thread, but keep posting here. When do you start X? And you said MRI--do you do MRI's for your routine scans? Did you have any indication you were having progression? I am still on I/L as first line and I get CT's as my routine scans. I fear each scan will be the one with progression.
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Sandi, my friend, I know the feeling. For me, after some days of feeling down and scared, I start getting used to the idea, start the new treatment, and somehow find my balance again. Keep calm and carry on becomes my motto. You are still ok.
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Candy-678, I start Xeloda as soon as Medicare Part B completes the paperwork and ships.
My routine scans started out as CT/Bone every 3 months. Then this past year, we changed to alternating CT/Bone and MRI, still every 3 months. I don't remember why we switched that...will try to find my notes.
It was my January MRI, that showed a questionable area in my liver, but Ultrasound, PET/CT showed nothing. I did start at that time to have slowly rising Ca15:3. It was decided to rescan 3 months later. So..yikes. I guess those micromets hiding in my liver were just waiting for a mutation to work. I never felt bad..still don't.
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