How are people with liver mets doing?
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I met with the trial group today and neither of the two originally discussed are available yet but I signed up for another one.
A Study of Prexasertib (LY2606368) With Chemotherapy or Targeted Agents in Participants With Advanced Cancer ClinicalTrials.gov Identifier: NCT02124148
This will be an iv chemo every other week and a pill taken twice daily. Biggest risk is low white and red blood counts.
Waiting on scan appointment and also have to wait another 2 weeks to get Xeloda out of my system. I have no idea other than the markers is X was working or not. I think my MO was tired of dealing with me. I really like the new MO at Stephenson Cancer Center. They have added me to the waiting lists of all immunotherapy trials coming up as well.
I should hear back later today from the IR regarding Y90 for my liver . Anxious to learn his opinion.
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Daywalker—so happy to hear your great news!
No1 - my policy is a BCBS Carefirst BlueChoice PPO (not IL). It is an excellent plan...they pay almost everything 100%, and my family premiums are super low. Every doc I see tells me to stay on this plan—they haven’t seen a plan this good for 8-9 years, since health coverage in the US starting getting super expensive. I didn’t even max out my out-of-pocket last year.
According to my IR’s office, because they are self insured, they can ultimately agree to pay for something that may not be approved through BCBS policy. In this case, I’m at a disadvantage for my company being self insured because the appeal process is different. IDK...it’s all confusing, and I need to figure it out.
Grannax - in the appeal letter, they mention all of the Insurance Companies that have paid for Y90 in BC patients. Many of which are BCBS companies...
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Hi Z - sorry you are experiencing this bloating especially so soon after you first Abraxane treatment. I can't say if it is ascites, and I don't want to scare you, but I know dear Artist suffered for 5 or 6 weeks before the medical folks were able to diagnose her obvious ascites. On my first clinical trial I had a lot of uncomfortable bloating and I was fearful that it was ascites. I beelined to my MO, PC and a Liver Expert. It was not ascites. Apparently it is an extreme hard belly bloat looking pregnant which is why we were so upset that Artist didn't get a diagnosis for 5 or 6 weeks.
Can get an appointment with you MO just to ease your mind?
(((Hugs))))
Edited to say - if it is ascites you'll need to get it drained for relief.
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The doctor can tap on your abdomen, and guess whether its fluid buildup or gas. Apparently that is standard operating procedure. But, that test isn't accurate at all, as my wife had ascites and they did that procedure over and over again and claimed it was gas. They even did an x ray and said it was constipation and gas. Ultimately, by using an ultrasound device they were instantly able to say it was fluid.
If it's fluid, it will be accompanied by weight gain. Now that may be really hard to distinguish as you previously fasted.
My wife ended up going to an emergency room, they used an ultrasound wand, and saw the layer of fluid. So, I would say that is the best way to diagnose its cause.
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Z, Not only our sweet Artist, but are sweet adorable Dani developed ascites in the end and her oncologist dropped the ball before he ever diagnosed it. I'm not sure how long she had ascites, but it got so bad that her thighs were even swollen.
Oncologists should now that any one with liver mets has a strong chance of getting ascites. So why don't they do something at first as apposed to 6 weeks later. Makes me angry!
Call your Oncologist today and see if they can't set you up for an ultrasound. You have had the belly bloat for some time. If it is ascites they could drain now for comfort, and the Abaxane should take care of that problem.
Looking out for you.
Robin
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Z- I am chiming in with Robin to go get your belly checked. It may just be gas, but you need to know. Especially you with your razor sharp analytical mind - you always seem to be one step ahead of the oncs. Recall you charting your CA15-3 which detected Ibrance fail before your team caught it. Let's get this checked and please watch your markers too. Do you have a current chart post Japan?
(()) Claire in your corner
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Robin, Husband, Animal Crackers - Thank you guys. These perspectives really help me think this through. AC I am hoping for your scenario for sure. Sometimes it is hard, sometimes not. I've read a lot about IBC and certainly it could be gastric issues. But I can't rule out ascites. Oof.
I had an ultrasound a couple of weeks ago that said nothing about ascites, but I've read they can come on quite fast. I have an MRI tomorrow. I'll ask if an MRI can pick up ascites. Does anyone know? In any case, it will be read by my favorite RO who takes may calls. He also read the ultrasound.
Gaining a little weight after fasting but nothing I would not expect.
The great thing about my new onc situation is that I have two. The second one I see WEEKLY. The local MO that oversees the IV Unit at the local hospital insists on seeing me before every infusion. Local MO comes to an office next to the IV room and meets with each patient individually. Ostensibly this is about approving my blood work for the IV, but I can use that time to discuss anything I like with him. I get my MRI tomorrow and meet with local MO Monday morning. Should get to the bottom of this in less than 6 weeks. Some things are going well.
Kaylynn - Prexasertib is checkpoint inhibitor. I like trials that combine immunotherapy with chemo and targeted therapy. Nice. Still you have questions ...
- The target of the checkpoint inhibitor is CHECK1. Why do they thing you, with TNBC, will respond to this checkpoint inhibitor. There are other trials that combine chemo with FDA approved checkpoint inhibitors. In fact, they can put you on chemo with an FDA approved checkpoint inhibitor without a trial if they make a bit of an effort. Why is this Phase 1 trial, and this particular inhibitor good for you.
- What is the chemo or targeted therapy they will choose for you. There are multiple options. Would this therapy be a good choice as a monotherapy outside the trial? Why? If not, then the trial is probably not a great option for you.
- Is this a first in human trial? If so, the risk is probably not worth the benefit given the other checkpoint inhibitors that have received FDA approval.
Keep us posted on everything. You've got us all in your corner as you optimize treatment in a very complicated situation.
>Z<
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Z-sorry to hear about the change in your abdomen. It must be rather disconcerting. I am not sure about MRI detecting ascites, but my last PET report, which mentioned progression of liver mets, also stated "there is no ascites". Could this be a temporary reaction to the chemo? Best to you, MJH
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Kaylynne- thinking of you as you navigate through trial options. Glad you consulted with the IR, too.
May the force be with you. MJH
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An abdominal mri definitely shows ascites. They comment on it some times when my wife gets an mri of her liver. They point out that they see some fluid. Nothing like she had before though. She had a drain installed, and one time we drained 4-5 liters in less than a week. It took some time, but eventually it stopped, and they removed the drain.
If they are going to drain it using a needle, they use ultrasound to find the exact spot to put it into the pocket of fluid. They were good in explaining it to us while it was being done. They compare sides, see which pocket of fluid is the deepest, and go into only one side. They say its too risky to do both sides for some reason.
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KC2010, what an awful predicament with your self-insured company. I hope things work out for you. I am in the same boat (self-insured company who handles certain appeals directly) and have been through several of those mortifying experiences with the head of Benefits making the decision and discussing it with me. It is wrong on so many levels - I have complained and tried to get it cut off at the pass by requesting that the third party administrator (Caremark in my case) handle the appeal but was unsuccessful both times. I have also gone to the Chief Legal Officer first to try to get it cut off there with no success. At the end of the day, it depends on what the agreement between your company and BCBS says about who handles appeals. Companies often want the final say and will handle third and fourth level appeals, for example. I actually negotiated that contract with the third party administrator for my company and was one of two primary attorneys who supported for the head of Benefits, which made it all the more mortifying and riddled with conflict. In one of the instances, my boss ended up giving me a bonus to cover the medication. In the other, I ended up getting the med approved (which would have been way too expensive to cover via a bonus). However, it should not need to go down like that and I was mortified I had to discuss it with him as well. Mind you, I am still "in the closet" at work with Stage 4 dx so having to discuss this with anyone was sheer torture.
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Hi Z, I became extremely bloated a few days after starting Letrozole, I couldn't sit comfortably, couldn't bend, couldn't eat, I had excruciating pain in my right shoulder (referred from the liver) and my sternum met was so so painful. I spent the weekend in a kind of stupor. By the Monday the pain had completely disappeared and the bloating subsided over a few days. It must have been tumor flare. I wouldn't be surprised if that is what you're experiencing after the chemo - very angry liver mets. I don't know if there are "easier" tests but I know they pick it up via CT.
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Shetlandpony: haven't heard from you lately..maybe you are taking a break from BCO.
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Yeah. Shetland! Where are ya? How are you doin'!
Lucia - Thanks for mapping out the Angry Liver option for me. I think that is likely a piece of it here. MRI today. Much less bloated this morning.
JFL - I cannot believe that HR gets involved in treatment decisions in a self-insured company ... and that you had to go through that! With your legal background the experience must have had many layers of profound frustration.
>Z<
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Z - good luck with the MRI. Will you get results today or will you have to wait the weekend?
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Z I'm hoping the MRI will disclose fluid if its there. But it's funny you have much less bloating today, it's like when you take your car to the shop and it stops making that noise that you took it in for. Ha I think between the MRI and doc appts you'll get an answer soon.💞
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Hi, Everyone. I have been taking an unpremeditated break from BCO. But this morning I just took a look at this thread and saw that some folks including Sandi, Z, and Claire, had kindly asked about me, so here I am to check in so you guys won’t worry. Cancer-wise I am doing great, with normal TM and going on nine months with Xeloda. Tired of course, but that’s nothing new.
I have been consumed with helping my DH get a diagnosis for YEARS of terrible fatigue and recently more alarming and strange symptoms. You know how it is: the research, trying to get appointments, doctor visits, waiting for test results, worrying. I diagnosed him with a rare disease and now he is indeed being evaluated for it and has started first-line treatment. Thank goodness our insurance enabled us to go to a high-powered university medical center because another family member is getting brushed off by docs and I have been working on gettting that person help as well. Waiting on genetic testing results and worrying a lot that our kid and other family members have the disorder as well. The good things are that the med has helped and that the disease can be mangaged for a fairly normal life. And I see that I am not completely useless, and can apply what I have learned with mbc to help my family as their case manager.
The other thing is I have noticed that I tend to back off BCO when we lose a friend here. Artist’s death hit me hard, with the added pain of knowing how some people who were supposed to help her neglected her. And guess what? During all those days of worrying when she didn’t post, I had her number in my phone but forgot that I had it. Talk about chemo brain.
So I have not read through all the pages but I do see on this page that Z is concerned about bloating. Z, I wouldn’t be surprised if it is just a reaction to treatment. I have had it come and go for years. (Not hard and painful.) At one point my onc ordered a CT with contrast as a good way to evaluate, and no ascites was found. I hope you get some reassurance soon.
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Thanks Shetland. I understand your break from BCO. Glad you updated us. Take care of your husband, he needs you.
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I am so glad to be here to help and support him, and I hope I can do it for a long time. I cry when I think of him dealing with it alone in the future. I'll be working on ways to try to ensure he has a support network when I'm gone. Ok now I'm crying again.
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Just off the phone with the IR I contacted. He says I have too many affected lymph nodes outside my liver in my chest wall, collar bone and sternum. This is the first time I have heard this. I knew I had them in the left axillary which I thought was under my left arm. He says 50% of my liver has cancer and even if I didn't have the other areas involved, he said the radiation could possibly kill me. GREAT!
I had my scan this morning and will have blood work, ekg on Monday and they will give me CT results. I am asking they pull it up on the screen and show me everything! I'm still in pain but not like on Xeloda and I am so very tired. I've changed my hours to 7-3 without a lunch to try and get more rest. I hate cancer.
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Kaylynne - I can't imagine how exhausting this is. The fact that you are working blows my mind. The IR's perspective is interesting. Thanks for the update. Keep it coming. Hope the weekend gives you down time.
Shetland - Waves of strength and empathy headed your way from NM. Life doesn't stop. Praying for a clear solution and rapid improvement for your husband. I have to say that sometimes I think if I did not have a family and I did not care how they were doing, I would just throw in the towel. I can't imagine I would care enough to keep going if it weren't for my concerns about my family.
Grannax, Animal Cracker - MRI report probably online. I don't have the nuts to look at it. So much for Zarovka the Pro-active Patient. Bloating present but less. Not interfering with my ability to do stuff. Opting for denial today.
>Z<
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Thank you, Z. Yeah, life doesn't stop. There ought to be a limit on how much one family has to deal with. Yes, wasn't your first thought on diagnosis concern for your kids and husband? And for others it may be parents, siblings, friends, beloved pets, etc. Our connections with other people (or animals) are so important. I mean, as essential as nutrition, exercise, etc. to our well-being and our will to live.
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Shetland, big hug. I'm glad you're okay. I was worried also. Your family is so blessed to have you in their corner.
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Thank you, lulubee. And I'll add that I'm blessed to have you and the others here for support. A real community. I hope you are doing well and finding things to enjoy in your life in spite of chemo duties.
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Posted long update and lost it. Too tired to repeat. In short... awesome trip, depressing return. Worried about progression. Appt is Tues.
Reading but not time to post much. Wish I could. Praying the best for all.
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Looking good Kaayborg!
>Z<
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Kaayborg, you look beautiful and happy! I'm so glad you got to go to St. Thomas with your beloved. Re-entry into reality is hard, so take an extra nap and maybe watch something ridiculous and funny this weekend. I nominate "What's Up, Doc?"
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Kaayborg - beautiful picture! Glad you had a good trip, Lulubee I haven’t seen “What’s Up Doc” for years. It is one of my all time favorite comedies, a great recommendation.
Kaylynne I’m sorry that the IR said not an option. I’m pulling for you on the trial. I can’t imagine how you are able to work while going through this.
I’ve spent most of the week at the hospital with my husband who had a small brain hemorrhage last Friday night. I was upstairs, heard a crashing noise downstairs and found him flat on his back breathing but not responsive. Called paramedics, and found out was brain bleed when hospital did CAT scan. After further tests at a 2nd hospital with a neurological unit they determined it was due to trauma rather than aneurysm, which didn’t require surgery and he is recovering well, now home but needs to take it easy for a while. It was pretty scary and sure took my mind off my heath for a while. And now I’m for now in the caregiver role.0 -
What a beautiful picture kaayborg! Nothing like digging your toes into the sand! May the rest and relaxation show improvement in you scans!
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