How are people with liver mets doing?
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Artist, Shetland Pony's advice is spot on.
I had a TERRIBLE time with my PCP just trying to get dx'd initially. She refused scans 3 times, etc. I wanted to ream her you-know-what, but these actions all have consequences. I did not want the lable "difficult, combative patient" to follow me around on my chart, so I played it cool. When it comes to cancer medical facilities, it's a small world out there.
Of course you're angry, and you should be! So am I. My PCP's blatant disregard for my concerns and suspicions delayed my Tx for 3 months, causing me unnecessary agony and a trip to the ER b4 it was finally Dx'd.
We must always remember that drs are human beings, and human beings can be rude, inconsiderate, fallable, dense, etc. Most of us probably don't have the onc that graduated in the top 10% of their class either. Those guys are working at Sloan Kettering, Mayo Clinic, Anderson, etc. We might just have the bottom 10% grads, ha ha, so they're obviously not going to catch the nuances. They don't have the brains for it, and they weren't paying attention in class part of the time. That's what we're stuck with unless we do some homework and seek out the best drs at the facilities we go to.
When you pick a new onc, ask the nurses in the infusion center first. They hear the gossip. They know who's good and who's in the lowest percentile bracket in terms of competence.
This applies to all of us when we decide to switch drs. Good luck out there.
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Shetland and Lita don't worry! I am a very non-confrontational low key girl. I will put a lot of thought into how I measure my words. I do plan to leave her room to hopefully explain how the ball was kicked around for so long. It's A shame that we have to worry about retribution for calling them on their mistakes thoug
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I don't really picture you flying off the handle, Artist. You seem like such a nice person, and I am glad to know you will be strong for yourself and not just let this pass.
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Artist. We do walk a slippery slope at times. This on top of having mbc. What a trip we're on!!!!
Babs
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Thats for sure babs, this whole thing really threw me for a loop. Shetland my appointment is tomorrow and I keep going over in my head how I will approach each issue I have. Think I'd better write it down stay on course! I made a huge mistake on following through with my trip to Portland the day after my procedure. It just knocked the stuffing out of me and I haven't bounced back like I would like. Luckily my DD is here now taking good care of me and DH who just had back surgery.....
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Bringing notes is a good idea, Artist. Good luck!
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Sending good thoughts your way, Artist. Keep us in your pocket.
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Artist Definitely go in with a list of questions that you have and stay calm. Good luck today!!!!
Saw my mo yesterday and all seemed fine. Then last night I got my TMs ( on the portal) and they shot up the most ever. I already sent my MO a note. My TMs are ALWAYS indicative of what's going on with my BC. I really am concerned!!!!! I'm on my second round of Halaven I had hoped for only a small or no jump. I need to have a treatment that works
Babs.
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bans- hoping it a flee. Hugs to you
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ok shouldn't type while under influence of Ativan. Husband had to stitch my finger up last night and I needed an Ativan prior. Been awhile since I took one.
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Aw Babs - how frustrating! I'm sorry to read that.
Any of you gals on Taxol - do you have nausea and vomiting issues?
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LindaE you going through that now? I did wanna hear about the vomiting and diarrhea issues, D has some problems with that, first was much constipation...
Leftfootforward well you lucky you could get first class aid right away, hope you feel better soon.
Babs I can't even imagine your shock when you saw that. I sent you a message on the other thread, we'll talk.
Artist sweetie, I don't know if you are the Onco's office already but do take a deep breath, so many wonderful gals here reigned me in so many times, trust me i had and have much much reason to send them to the moon, but you gotta keep the eye on the prize. Very tempting, ignoring your agony is totally unexcusable and ignorant.
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Mommall - It was a daily affair for the last 2 to 3 weeks. Completely drained me. Got a new script called Zyprexa a few days ago and the vomiting and nausea stopped. This med is an anti-psychotic drug but has been proved effective for chemo patients with V/D issues.
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thanks Linda - very interesting!
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Well after a very long and detailed appt I was told by my Onc that ascites technically marks the beginning of the end...The ascites and the report she got from the ER indicate major progression. She wants to move me to Abraxane right away, pull out the big guns and try to knock it down. She does not think Xeloda is what we need at this time. I do trust her knowledge but sometimes I feel like she is a bit detached. She is referring me to a center closer to my home. I will be getting a port soon and losing my hair, just before my daughters wedding of course....My DH and DD are so upset, as well as me of course. It has been the most horrible morning so far.
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Oh Artist I'm so sorry to hear this. I still want to smack your ONC for putting you through such misery for 6 weeks! Actually I'd like to smack her even harder now. I would still recommend you get a second opinion. I don't know anything about Abraxane so I have no words of wisdom for you but I am going to do some research. You hang in there! Abraxane may just knock the socks off those mets and get you back to a place where you can go to Xeloda or some other treatment. This is not the beginning of the end! This is merely a detour through a less attractive area of a city but you will come out to a lovely scenic route to continue your long long long journey.
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Yes, Stage 4 is enough to drive anybody crazy 😜.
I guess we should all be on anti-psychotics now, too.
Artist, I agree with what others have said. Ascites is not necessarily the beginning of the end. Rosevalley and Stephanie (Flowers?) lived with them for SEVERAL months...as I recall Rosevalley surpassed her drs expectations in terms of longevity, and you WILL TOO!
Let's be honest, as soon as we were dx'd with Stage 4, we all knew it was already the beginning of the end. My RO, who I adore...he's the sweetest man because he has suffered with cancer, too...said to me, "Every patient is unique. One size doesn't fit all. These (life expectancy predictions) are on a spectrum. They're just averages. You could have 6 months or 56 months, or you could be one of those people who are outliers and have 7 years or more. We just don't know. Your body will respond to each line of treatment differently. And let's not discount faith."
There are new treatments in the works ready for FDA approval and there are numerous trials. It's not over yet.
Keep fighting Artist and Babs!
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Artist is not the beginning of the end. it's a tough thing to say. It's gotta be very bad in my opinion, and all choices worn off before they say this. Could be it's more complicated time. but there is much still to be done.First order of things is make sure they drain it all, and a change to other tx could make a big difference. My daughter has ascites in the abdominal area, and now they found it in the pelvic area, I think there is much t be done still.
What about using immunotherapy, could she look up some clinical trial maybe that would be compatible for you? Would a biopsy fo some kind guide you in a different way? where are the ascites? There is another wonderful thread of peritoneal ascites, you might feel comfort there too.
When is the wedding? Is the Center nearer to you a major Center? So sorry you had to go through this.
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Yes I thought her bluntness was a bit callous especially because she did not ease into it. My husband was dumbfounded. But already I'm back reading up again and finding so much gratitude and strength from all you women!
Cathy, I love the analogy! Thank you....
Mom, the wedding is in October and I will go get a fabulous wig and learn to put on some eyebrows I suppose. Just want to feel well enough to have a happy day for my beautiful DD. She is here now and waiting one me and DH who just had back surgery. A true love!
Mom, all I have to do is recall everything Dani has been through and others here to remind myself as Lita say, that everyone is different, and no one knows except God...
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Artist. Having ascites while not the best thing does NOT mean the beginning of the end. You should definitely go for a second opinion.
That being said I know how you feel. Before my DD wedding I was put on Taxol and lost my hair brows and lashes. FYI. I can admit to being very vain. So I had my brows micro bladed and they looked better than my own. I went to have false eyelashes done professionally but there was nothing for them to adhere the individual lashes to. I was soooo upset. Someone suggested I go to Sephora and the lovely make up person there sold me and put on lashes for me. As she advised they barely lasted the night but that's all I wanted. The hair was the hardest for me. I do have a great wig thanks to my boss ( he's the number 1 hair transplant dr in NYC) I hate how I look in it. I think I look like a religious person. But the bottom line is that I was there to enjoy her wedding. I got to share this special day with her. And she has the memory of my being there ( My mom died of bc one year before I got married). Whatever you look like all she wants us you there. And that's all you really want too. Enjoy all the planning with her. These are the important memories she and you need to have. Take today to be sad and wake up tomorrow with new resolve. Please see another dr. We want someone who believes in us and doesn't give up until they absolutely have to and then helps us transition to hospice.
I wish I were near you to hug you now. Sending you virtual hugs!
Babs
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Aritst you know some insurances pay for a wig, then you could get a great wig with gorgeous hair. My DD spends a lot of time doing her makeup, eyelashes and brows always takes time, but it gets done. What color is your dress?
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Oh Artist, I'm so sorry. Talk about a horrible morning and you and your family must be in a state of shock. When we discovered that my liver was riddled with mets back in May (too many to count or detail, stuffed with mets as radiologist said), I was switched to Taxol which I read somewhere on these boards is the equivalent of Abraxane, except the latter has fewer SEs. Your MO, although I'm also mad at her, has the same reflex as mine, as in let's get the big guns out. I don't have ascites (yet) so can't help you there but I'm glad she's offering you this option. We can do this Artist! Sending you BIG hugs.
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Artist, The first and most important thing I want to say to you is that I am sorry that you and your family are going through all this. I really, really hate this disease and the way it just inserts itself into our lives and causes so much havoc and relentlessly pulls us apart as we try to cope. You are a beautiful soul, and you don't deserve this. No one does. The second thing I want to discuss is your MO. You were suffering with acsites for way too long before your MO recognized it or even showed concern for your symptoms. Then it was first diagnosed by a dr in the ER. In my opinion, she has not been giving you the attention or support you need and deserve. She also presented her opinion in a very ugly inappropriate way. Is there an NCI designated center you can go to for a second opinion? What type of resources are offered at the local center? Are there trials? Will they be willing to offer you alternatives to your current MO's recommendations? Last, I want to say that I truly hope that you respond quickly to whatever treatment you decide upon. Big guns? I would tend to go with them for now, too. It would be good to knock those buggers down as soon as possible. Whatever you decide to do, please remember that we are all here for you, just as you have always been here for us You are in my thoughts and prayers, my dear friend.
Hugs from, Lynne
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Artist, what a horrible morning indeed. For what it's worth, I agree with your onc's choice of Abraxane, and I am glad you will not have to take all the Taxol pre-meds, which will spare you some side effects. I do heartily agree with 50sgirl that you would do better with a new onc at an NCI center. Sending hugs to you, sweet lady.
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God, I love you all so much. I have been just sobbing for 15 minutes. Then decided to open this up and feeling all the love and concern just melted my heart and made me smile.
My DH and DD just went off to get me some CBD oil at a dispensary....They insisted that I need an appetite stimulant and anti-anxiety help. They are so cute. The vision of my straight laced husband at a dispensary with his "little girl" buying cannibus just cracks me up somehow. I think he will be rather uncomfortable. But that's him, he will do anything for me. She at 25 is just so confident and determined, she read a bunch of info wrote down questions and off they went.
I know you are right babs about her just wanting me to be there. I just really thought I would make it to October with hair. I want her pictures to be perfect of course. But I will try your suggestion on micro blading thanks! Lashes I'll wait and see and I guess it's time to go wig shopping. I am cutting my own short first as I am not sure how soon I start the Abraxane. Tomorrow new resolve!
Mom, I just started shopping for a dress but to blend in well for pictures it can be anything from burgundy to rose pink. Something lacy and form fitting as I am finally thin enough to pull it off! LOL, how ironic...
She asked If I wanted to be referred to another Onc in my own town. I decided I don't want to do the drive while doing chemo and someone fresh might be good. We have a pretty large and accredited cancer center and they also affiliate with Stanford. I did not dislike her and I think she is extremely smart, I just felt like she followed a status quo and let it ride a few times. So a new start on everything. First thing is getting port, then another CT and a brain MRI. Then the IV's start.
Hope the CBD helps......
Thank you ladies so much, I hope everyone else is doing well tonight and I'm sending hugs back!
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Artist...I use CBD oil. It does NOT make you high. It has been a Godsend for me. I can sleep and it helps with the nerve pain and deep bone pain that opioids don't even touch.
Remember, we are ALL praying for you. Keep looking up. I snuck away with my husband to Napa. I'm out on the patio looking up at the trees outside my hotel room.
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Artist, I'm so sorry that you are going through this. Who does your MO think she is saying such a horrible thing. She is incompetent and not upbeat ,positive, and supportive. I left 2 MO's because of something being uttered very closely related to this. I had scattered lung mets and the MO at the time put me on Letrozole/Ibrance. I was worried about my immune system being lowered by Ibrance and told him I was afraid it would re-activate my hep B that almost killed me. He said in a harsh stern way, "if we don't knock these lung mets down...you won't have to even worry about hep B." Then he told me to call him immediately if I started coughing up blood. Needless to say, I never went back to him after that appointment. I do have a compassionate MO now but don't trust her anymore because of her forgetfulness. My new MO started me on Faslodex/Ibrance and it wiped out the scattered mets. So I'm glad you are leaving her!!!! And just for the record.....I have seen many patients completely get rid of their ascites and they have not come back!
You are in my thoughts and prayers!
Big hugs from Alabama!!!
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Artist, I am not a fan of your oncologist!!! That whole detached thing really bothers me. I have had doctors like that. Makes one feel so trivial in their minds. She doesn't know it is the beginning of the end. You haven't even had chemo yet with stage 4, right? I recall someone on these boards saying she had ascites a year into diagnosis and then it cleared up after a year and now she is fine 3 or 4 years later. I can't recall her name.
I pray regularly for a miracle to cure me of this cancer. What do I have to lose?! I will include you in my prayers tonight!
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Artist - When she said it was the beginning of the end, she subconsciously meant it was the end for HER. Seriously, I sense it was a passive aggressive way for her to be defensive about her failure in diagnosing a fairly straight forward cancer symptom.
But we don't have time to even take a moment to curse the fallibility of our doctors. Please put all you focus and energy into YOU ... awesome self care, prayer, light exercise and maneuvering yourself into the care of an awesome new oncologist.
As Lita says, every day is the beginning of the end for all of us, but when that end is going to be no one can say.
>Z<
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Artist,I'm so sorry you are dealing with this right before DDs wedding. I haven't had ascites, but I am pretty sure I've read on some of these threads about women who have had ascites and now it is gone. I think you just need a more positive, forward thinking MO.
Stefanie
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