How are people with liver mets doing?
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Artista. So sorry you had to go through that!!!! Glad you feel relief now!!!!
Hugs
Babs
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Artist I cannot believe what you went through. How absurd that these docs don't think of these details. They see people all the time with liver mets, what's with them? Because of your experience, If someone here is gonna say I'm having weeks of constipation, anyone over here will say, oh maybe ascites! So Onco musta've seen so many more people, very unsettling. Sure hope you are feeling better. And Onco has to explain to you WHY you getting the ascites.
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After hearing all the horror stories, I think we all have to keep ascites in the front of our minds, knowing we have liver mets. Ascites can show up without warning.
Any out of the ordinary bloating is questionable, especially if it doesn't resolve with laxatives and added fiber, etc. It surprises me that drs aren't more up to date with this. I guess the first thing we need to tell them when we go to the ER is that we have liver mets. Maybe then they'll get a clue.
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Artist, I am sorry to hear about the ascites. But glad you are more comfortable now. Please get a new oncologist. I know you have considered it in the past.
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Artist, I agree with Shetland Pony, it's time to consider a new oncologist. There's no excuse for the lack of a correct diagnosis after 6 longweeks with the issues you described. I'm so relieved to hear you are feeling better, I just wish that feeling had been achieved much earlier.
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Artist, thank you for bringing this to our attention. I have been feeling some mild discomfort on my right side which seems a bit swollen to me. I have not been constipated, so I'm not sure what could be causing it. Now that I'm aware of acities, I will have my MO check this at my next visit.
That's what is wonderful about all the women on this board -- the sharing of information which could be valuable to any of us.
Diane
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Artistatheart, I think I agree with Shetland Pony. Time to find another MO. Every time I go to my MO he measures my liver. I have no idea how but he's always checking and the nurses always ask about discomfort or pain any issues that are concerning. After 6 weeks that should have been an easy one for a good MO to figure out. I'm sorry you had to go through this. It seems a little unnecessary being that they know you have liver mets. I have to go to my local MO every 4 weeks so if something changes he is on top of it. Glad you are feeling better but keep an eye on this.
Hugs to you!!!
Anita
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Artist, geez! I am so sorry you have had to deal with this unnecessarily and for so long. Your onc really should have been the first to consider ascites as the cause. I'm completely baffled and angry right along with you. I do thank you for sharing so that we are all the wiser should we find ourselves in similar circumstances. Do you have good options to explore for another onc? Any idea what's going on to cause the ascites at this point? You've not had it before, correct? I had only a small amount at dx. Looks like I'm going question crazy here. Answer or not as you wish. Be well!
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Artist how are you?
In this trial, Dani is being checked for CA125, now for me it sounds ridiculous, she had an oophorectomy/full Hystero yrs ago, why do they check for this marker. Her regular Onco doesn't. It showed 10 a few wks ago and 9 this week. Could it make any sense? I really would like them to check for the Ca 25.27. I know we have spoken about markers here, and to be honest, they are not a great regulator for her, but if they are doing it, why are they concentrating on Ca125 and not on 25.27?
Also re:PET/CT - Onco insist in doing skull base to tight, not full body like she used to have. Is it really harmful at stage IV to have Pet/CT to the full body? How long does it take for radiation to actually harm the body, would it not be worth the benefit of knowing now what's up as opposed to what might be from the repeat Pet/CT, she will be getting it anyway but not to the extremities or to the head, how could that matter?
I'll communicate with Onco after I hear your opinions here..
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Oh Artist - that's unacceptable! It gets my blood boiling. Sorry you had go through those awful 6 long weeks. I would be angry as well! Did they at least palp your abdomen during that time? Good old physical exam can still be very useful and trigger out of routine imaging. I'm so glad you found relief.
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Artist I always get so upset when I hear of "doctor fails" like what just happened to you. My son is a doctor and I've told him so many times to always believe the patient. Seems like a no-brainer to me. To let you suffer for SIX weeks!!! It's what I call unnecessary trauma for patients like us who are already experiencing MBC. Isn't that enough?
Okay, enough said. I know you need to get past that episode to move forward.
I get to go see my grandchildren tomorrow for the first time in over a month. I plan on having fun for a day. My five year old grandson wants to show me his latest accomplishment....a front flip off the diving board! This child has no fear and he inherited the gymnast gene from his father ( yes, the same one who is now a doctor). The only downside to this visit is that we are going to the pool, which means I have to wear my bathing suit! I am swollen in the liver area too. I've been told it's not acites because it feels soft not hard. In my opinion it sure looks unattractive, especially in a bathing suit. Cringe. My kids love for me to play in the pool with them, so I will. Because that's what grandmother's do.👩👦👵
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momall.., I get a full body pet three times a year for six years. I think the doctors figure, since I'm stage 4, the benefits outweigh the risks. I'm only interested, at this point, in what might kill me in a year...not what might do some damage to my body many years down the road. I do think that if I am lucky enough to live long life with cancer, then the toxic treatments will eventually do me in. We all gotta die of something.
Stefanie
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Momall, my PET/CTs have always been "eyes to thighs". I assume that is because, as my onc told me, when it comes to the brain, a brain MRI is better; and when it comes to the extremities, I believe it would be unusual for mets to appear there first. That said, there may be a good reason to do whole body scan for Dani and I would speak to the doctors. Ditto for which TM they test (in this case CA 27.29 vs. CA 125). They probably have to do the same scans and blood tests for everyone according to the trial protocol, but I think her doctor can choose to do additional scans or blood tests. That's how I understood the trials I considered.
Grannax, your grandkids will see their beautiful Granna, and their opinion is the only one that matters. Have fun in the pool! If you are on any meds that cause sensitivity to the sun, remember to wear a SPF rash guard.
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I have a new kind of scanxiety. Even though my onc has always monitored me with PET/CT, my scan after my first Xeloda cycle was a CT with contrast, at the request of the interventional radiologist who is keeping tabs on me in order to be ready to do radioembolization when the time is right. My onc said his scan got priority. It showed larger tumors and the report called it progression. But my CA 27.29 dropped 30 points. I am inclined to think that the flare pain I felt and the drop in TMs means Xeloda is working, and that the tumors are swelling as they "die". And my TMs seem to forecast scans. Aaaaah! This is the very reason I like PET scans; they show not just size but activity. I doubt insurance will pay for a PET right after a CT. I haven't heard from my onc yet.
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Oh Shetland i know exactly how you feel. I have no trust in ANY doctor. Sometimes they are distracted, sometimes they do what is protocol, sometimes some bureaucrat in a distant office dictates how a doctor should act. And so it goes, I am eagerly waiting to see what your Onco will say. So sorry for the news. Once they found the so called progression, now they have to tell you what the plan is....I still prefer Pet/Ct, period. If it shows progression, maybe Ins would pay for it. Do you feel this squeeze? It's my huge hug to you!
Stefajoy so nice to "hear" from you. I feel exactly the same way, Dani is even going along with Onco, she's like yeah why do I need more radiation, hmm, how do I tell her it really does not matter so much, she's quite clever, but she chooses to believe what she believes, and i don't wanna be the b..tch you know, so...I'll try to ask her once more, oh, did i learn to bite my tongue! How are you doing?
Meanwhile the circus continues, and i keep checking to see if the slides were sent out to F1, i just found out that supposedly there was something missing in the paper work (as if either F1 or Onco or the pathology dept did this for the first freaking time), so it should be going OUT Monday or tuesday!!! I'm telling you if it wouldn't be so sad, I'd be rolling with laughter. Mind you the PDL1 request, THEY ARE LOOKING where to send because this BIG center in NYC is not doing it anymore for bc patients,they are looking...so weird, how could they not have this info in the tip of their fingers, this is so common these days, honestly this is absurdity...
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I agree with Stefajoy. I'm not too worried about radiation. I get a PET/ct every 3 months.
I think it's prudent to try and stay ahead of excessive progression. Catching it as soon as it starts is better than waiting additional months and then it goes too far. Increasing TMs can shoot up, but they don't show WHERE that growth/progression is coming from. The bones? Liver? Another organ or muscle tissue? Only a PET can show where the uptake values are concentrated. That's why my MO doesn't even use TMs. She says scans are more reliable. If one's TMs shoot way, way up, that would probably necessitate another scan anyway for a dr who uses markers as a dx tool.
I don't think I'll be around in 15 or 20 years. Five would fabulous, ten - with decent QOL - even better if some new therapies come down the pike. Nevertheless, the irony is that all that radiation from the scans can cause ANOTHER type of cancer to spring up somewhere else in my body. I'll just have to try not to think about that for now.
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Lita I agree, well said. Now on to convince Onco and D, D wants to know but she is scared of the consequences.
Again for a few days constipation, I know there was much discussion here about that, and Artist you just went through it, what are the truest tried ideas. Thanks to all you wonderful wonderful ladies!!
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The little yellow bellied finches have built a nest in our backyard Japanese Maple where all the branches intersect. DH doesn't like that they're pooping all over the side walk. Hope they'll be okay next week when we have all the workers back there tearing out the old cement and pouring the new stuff. I can't see any babies yet, but the daddy bird is pretty vigilant.
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To all you wonderful people on this discussion board, I want to thank you for your collective wisdom and the beautiful spirit you possess in encouraging each of us on our personal journey with breast cancer. It has been a tremendous blessing to me. I am posting this in the threads I either participated in or read regularly due to my diagnosis. Sorry for duplication.
I've been meaning to update you all on the study I was in, but I couldn't because typing (or anything with coordination) was pretty much out of the question. I officially started in the study on May 22, and found out on May 26 that I had acquired a whole new crop of small tumors in the brain, while the one larger one had grown to more than 3 cm. I immediately began 10 days of wbr. There was a great discussion and it was decided I could stay on the study if I didn't have more than 7 days on 2mg of decadron a day. So, I underwent the radiation surviving on an alternation of Tylenol and Advil to keep the headaches down. We timed the decadron so I could have it down to the end. Really, I wouldn't recommend it, although it pretty much eliminated coming off the stuff at the end since the dose was so low.
My 40th birthday was June 25, which coincided with a low point for me. My coordination on the right side of my body gave up and I took to eating with my left hand out of necessity. I was already scheduled for CT scans on the 30th, so they added another brain MRI to go with it. End result, progression everywhere, but it's my poor brain that matters. I was immediately put on 4mg of decadron 4 times a day. What a help. I can now walk and type and slice a banana. I actually took a shower by myself a couple of days ago. But the brain gets tired and I have to remember to make allowances for it.
July 5, I went to see my onc for the actual report from the scans. I saw all the pictures and know the worst. She has never wanted to give me a time frame, but she sat there and said I have 4 to 9 weeks, and there is no way to know how many of those weeks I will have a functional brain.
There is just no way to convey how that hits. Maybe a long, long silence. In the 22 years that I have known my husband, it is the first time I have seen him cry. I know that he has, but I have never seen it. I'd rather not have.
My parents were visiting and working on our house. It was good to have them here. My older son came home from the summer camp where he was working, because he needed to be with me. That was before we knew, and he was planning to go back. He'll get it his stuff tomorrow when we pick his brother up from a week there. He does not yet know, and I dread the telling of it. I hope this week has been really good for him and that he has made closer friends with the other boys from our church that were there. He's going to need them.
I have been referred to hospice care, but we will wait on that (by mutual consent) until we return from a long drive to Ontario, Oregon to visit my big brother, who cannot come to see me. I haven't seen him in 3 ½ years. We were planning a little family vacation in August to DC. We've just changed the dates and direction. The onc said to go!
On the home front, we are making preparations while I can make decisions. I am amazed at the number of responsibilities I have to extract myself from and train someone else into. Hopefully that means I've been of some use to my fellow human beings. Yesterday we visited a couple of funeral homes in the area. It was a curious, but okay experience. We tend to be very practical and straightforward people, so it didn't seem emotionally taxing, although it must have been as we both came home exhausted. Since we have the choice, we want to have things lined up and sorted out as much as possible so my beloved ones don't have that descend on them at the last moment.
Strangely, I am at peace with all this. Back when I knew the bc had returned, I gave it all into God's hands. It was a good choice because He's carried me along and I've been happy and cheerful all the time. I probably won't be posting on this board again due to time constraints and the emotional energy involved, not to mention mental effort. However, I want you to know I think you all are the BEST!!! My beloved has offered to post on here to let you know when it's all over. That's a sample of my man!
Wishing each of you the very best. Keep your heads up and smiles on your faces. It always makes the day go better!!
With my family on June 17.
Aren't they just the best?
With my beloved on the eve of my birthday. Our church gave me a fantastic party!
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rgc77: Thank you for sharing the photographs of your beautiful and handsome family. To me, our loved ones are why we fight this disease. You are an amazing woman. Even with your health news, you still manage to continue your roles as a mom, daughter, sister and wife and to be sensitive to their emotions and needs. Enjoy that trip out West and if you have energy, send us another photo.
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Lita, I've never seen a finches nest. I hope you get good photos of the babies when they hatch. That is exciting!! Keeps your mind occupied too!!
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rgc77, My heart is with you today. Thank you for sharing your journey. I'm so sorry for your progression and your prognosis. My cousin passed away a few years ago from BC. She was only 44. She was angry (can't blame her) and really went out kicking and screaming. When I was diagnosed, my first thought is that I would try to leave this world with grace and love. Your post epitomizes just that. Thankyou for being a role model for all of us. I'm sorry you have to to leave your family so soon. Im happy that youve had the wonderful years with them that you've had. I found this ecxerpt in a book I recently read that really sums it up.
"There are the years I will not live, but set against the vastness of eternity, the time I've lost is but a moment. What is forever is the same as if I'd lived another sixty years or more: those I loved will always be a part of me, and I will never cease being a part of those who loved me."
May you memory be a blessing to them for always.
Stefanie
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rgc77 What a lovely family! They will be crushed when you are gone. I hope that others will rally around them for support. What choice do we have but face what's put in front of us with as much dignity and grace as we can muster up. Yes, we all have to die but we all wish it could be much much later. Wishing youa pain free journey knowing that we are all holding your hand!
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Rgc77, what lovely photos of your family. I am so sad to hear the prognosis you were given. I can tell that you and your family and friends will be there for each other, and that love will surround you all. Similar to the quote from Stefanie, I believe that love is not confined by time and space. Wishing you and your family meaningful time together, and peace to you all.
ShetlandPony
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rgc77: Thank you for the beautiful photos and words of wisdom. I have a 17 year old son, and my heart hurts for you and your sons. I'm so sorry to hear your prognosis. Your attitude, strength and care for others is inspiring! You are too young to be dealing with this!!! I hope that you have a fabulous family trip and are pain-free and well enough to enjoy all three of your boys for as long as possible. You and your family will be in my prayers. Theresa
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rgc77, our prayers are with you for a pain-free, comfortable transition home. You still have a lot of life left to live in the next several weeks.
Hopefully you can line up some support for your kids. I lost my mom when she was in her 40s...I wish there had been some counseling or something for me back then.
You have been an inspiration to us here on the boards.
Lita
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rgc those are beautiful pictures. It's so special of you to share them with us. Thank you for being supportive, so sorry you have to deal with this situation getting the news so sudden. Wish you peace.
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Rgc, my heart is breaking now for you. The only thing that makes this ok for me is that you feel peace about it. How I wish I could come to that place. Godspeed on your journey home and blessings to your family. Husband, thank you for letting me know that your wife battled the ascites with success. I just don't know enough about it. The bad thing was I was never truly "constipated" just felt so much pressure I assumed and my Onc just went with it. Six weeks of the OTC's just left me drained , weak, dehydrated. I went to Portland with my sister two days later as I was determined not to ruin my trip but I could barely make it through the whole airport experience without leaning on a wall and gasping for air. Funny how the ER doc in a different hospital immediately upon hearing liver mets ordered a CT, found and rectified the problem. See my Onc on Friday and keep rolling around In my mind how to confront her without blowing a gasket. Thanks you all so much for your feedback and support.
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Artist, some thoughts occur to me about Friday's visit. I hope you don't mind. I think it's important to know what your goal is. If you are thinking of staying with this onc, you probably need to talk it out in order to re-establish trust and move forward. Obviously I don't know her, but I would hope my solemn silence and look would elicit an apology to start. If she is defensive, it will be more difficult. If you are planning on transferring your care to someone else, you might feel like giving her a well-deserved upbraiding. BUT she can still write things about you in your medical record at this point and say you are an unreasonable patient or something, so playing it cool might be better. When I transferred my care, I didn't even see the guy again; I just told the nurse on the phone to tell him thank you and that I was transferring elsewhere. I figured my family would probably have future dealings with that medical center for non-cancer issues, so I wouldn't burn any bridges.
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rgc77 - Everyone here (and on the other threads you posted to) has used the same word to describe how you are handling your situation and that word is GRACE. You are amazing, brave and strong. I am stunned that this is happening to you so quickly and at such a young age. Your grace and courage are beyond admirable. Please know you have touched us all profoundly. My heart breaks for your boys and DH. I hope that you have more time to spend in the loving circle of your family and that you are not in pain. Sending love and hugs to you and your family.
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