How are people with liver mets doing?
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Shelby - Oh good lord. You and your healing are the only thing that matters, the only thing that is real. The rest of the drama is self-created and self-generating. Like you needed more problems on top of brain tumors, but apparently universe felt you needed some fake problems as well.
IMO opinion, you have to be pretty black and white about this.
1) You can put on some glasses and see this behavior as the (severely) misdirected care, concern and love of people who can't get what you are going through. This is not a crime. Nobody who doesn't have cancer gets it. If you are a saint and you can find true peace with that, then great. If not...
2) You need to send your sister and mother packing. They get an occasional e-mail update about how you are doing, when you feel like doing it. If they continue to attack you, they get cut off entirely.
Your life is on the line. It seems you have friends you can lean on. What is going to give you peace?
I love my Dad and my brothers, but that part of my family has never been good at dealing with illness. They don't know whether to attack you because you are weak or treat you like an invalid. It's a thing that they have. I don't involve them in my care. They get minimal occasional updates. They feel left out. Bummer for them. I am fighting for my life here.
>Z<
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Shelby, I'm glad you escaped the disorder that affects your mom and your sister. Has your therapist ever mentioned the word narcissist as describing them? They are not behaving as family should, or even as decent people should, so in my opinion you do not need to pay attention to their unreasonable demands and twisted accusations. Just take care of yourself and continue to call on people who are actually able to show compassion. If there ever was a time to look out for yourself first, this is it. Sadly I do not expect those two to change any time soon. I would ask the hospital personnel to tell them you are not up to visitors right now. Clue in the nurses. They can be very smart about protecting their patients.
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Oh Shelby, This upsets me so much too. All of the responses here are so insightful and on target. They are either extremely narcissistic or just don't know how to deal with your illness. Either way it is to me, cruel and selfish, to attack you like that. My God, we are already emotionally fragile, living with constant anxiety and everything else. This is the last thing you need right now. As many said, put this on the back burner and try to clear your mind. Do what you need to do to get through your surgery. They may or may not come around but it is up to them to see the light. I think I read awhile ago that you live in Reno too? Your friends here are thinking of you today and sending good vibes your way.....
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Sheby, words cannot express how sorry I am that you were treated that way. You definitely don't deserve that. I also have a mother that is very similar. She just doesn't get it and can also be so cruel with her words. I'm not sure if sometimes when people react that way iit isbecause they are hurting and can't cope. Anyway, for my mom, it is about her, not anyone else. I really try to avoid telling her any specifics because of this. She does say she is hurt cause she doesn't know what is going on. But when she does know, she uses it to spread my news to everyone she knows, so she can get sympathy from them. Being I really know how you feel, no matter what, it still hurts that your mom is no support. I try to lean heavily on friends and family that treat me better and as far as cancer I chose to leave my mom out of it. Even though she is hurt, I tell myself that if she acted differently, she would be involved. But since she don't, and I can't control how she acts, then it's best this way. I certainly hope and pray for things to turn around for you soon. I do hope that you can figure out how to find peace in this situation. Wishing you only the best.
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HI Shelby,
Something Shetland Pony wrote reminded me of something important!
It sounds like you, like me, might not have a legal partner or any offspring to act as your designated agent for healthcare, should need arise. Legally, unless you've revised your advance health directive, your mom and/or your sister will become your decider.
They are also first in line for information release and visitation at the hospital, unless you choose differently.
What and who might you want?
I think all US hospitals are required to have up-to-date directive forms on file for in-patients and maybe same-day-patients too.
Asking trusted friend(s) to fill the role and putting their name(s) in the blanks is one more thing to think about, but may be of life-saving and life-enhancing importance to you later.
Hope you have time to sign on and read our letters of support.
We care about your well-being, Shelby, and are glad you have caregivers who care too!
healing wishes, Stephanie
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Great advice, Stephanie.
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Ugh. I need to share with you guys. (If you are on the Ibrance thread you've read some of this there.) My TMs have been slowly rising over the past 12 months and are now above normal for three months in a row. I just found out that the last test puts my CA 27.29 in the 50s now, when it was in the teens a year ago. A jump of 17 points from last month. After being NEAD from Taxol, my last three PET-CTs (six-month span) all show an area of slightly increased SUV in a certain part of the liver. The reports for the first two of these also mentioned a lesion in that area measuring about 2 cm. But the most recent report did not mention this lesion. I had to ask my onc to have the radiologist please look and say if it has changed size. WHY do I the patient have to tell the oncologist and the radiologist to do this? I am at an NCCN center for heaven's sake. My markers indicate that something is going on. Is it in the liver again? Somewhere else? I also asked for a CT with contrast, because sometimes ILC mets aren't very FDG-avid and don't light up enough on the PET. Again, WHY did I have to bring this up? Feeling scared and sad and annoyed. I feel like I'm about to be forced on a roller coaster ride I don't want to take. Appointments, tests, treatment change. I have other things to do!
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Shetland - Every run in with the diagnostics feels like a roller coaster ride I did not want to take. Exactly. I would launch int my "TM's are meaningless rant" except that with ILC you sometimes don't have much else to go on.
So the latest report mentioned elevated SUV in that suspicious area, but no lesion? Also is the SUV changing over those three scans?
>Z<
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Shelby,
I only write to reiterate what everyone else said. You don't need this now, or even in the future. The most telling line you wrote was about therapy for 2 years about these 2 relatives, which tells me this isn't new. Forgive them as soon as you can, for YOUR sake, and move on.
I, too, am without family here but I am far from alone. I have two close friends who do almost everything with me and several others who I know are available if I need them. Develop those people in your life so you can reduce your guilt of having to ask for help or being a burden. Find the ones you don't have to take care of while they're caring for you.
Everyone: I do expect my MO and team to be the cancer experts but I do not expect them to know everything. They are my partners in this and they are not God. I, like Stephanie, read voraciously so I can make informed decisions(although Stephanie is the Queen of knowledge resources- thank you, Stephanie).
Love,
Patti
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Zarovka, the radiologist did not say anything about that lesion on the most recent report. I think it would be pretty important to follow it and see if the size changes. Good question about the SUV. I don't know what amount of change is significant, but it varies by only one tenth on the three scans, and is described as "mildly increased" and "mildy hypermetabolic" and "slightly above the background". See how ambiguous it is? My onc talked with a radiologist and they said it was subtle. But combine that with the steady rise in TMs, and it looks suspicious to me. My TMs have been accurate in the past, so my onc is concerned but not panicking. I have not talked to her since the latest TM number came in. It is the highest number yet. And I am feeling occasional vague somethings in my liver area. That too is ambiguous, since I had twinges when Taxol was clobbering the tumors.
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Thank you all for the advice and incredible support. While irreparable damage has been done with my relationship between my sister and my mom, I'm doing my best to let it go. I do have a therapist I see monthly and she reminded me "it is not your responsibility to help others be comfortable with your disease. If they can't deal then that's their problem not yours. Only you can take care of you."
So that is what I am doing. I'm starting a new chemo Halaven next week and I am going to focus on me.
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I had my latest CT scan from my neck down and my brain MRI today. Made for a long day. But my MO is on top of things and emailed me tonight that both scans are NED. So I can rest easily.
I hope that others in this thread may hear these words or at least reach a stable state.
Thanks for being a great support system.
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Shelby - Your therapist is great. Keeping going back there when things get tough, unless you need another dose of outrage from the BCO community. We're always ready!
Shetland - What is on my mind is that scans are not that precise. There can be quite a bit of variation betweens scans of the same person taken on the same day by the same machine. We don't have so many good treatments that we can afford to switch when we haven't actually progressed. I would not call what you describe progression, but I have IDC. There is a lot more judgement involved with ILC because there are even more issues with the diagnostics. Keep pressing the radiologist and the oncs until you are really comfortable with the decision. And a get a second opinion.
The issues you are having getting a clear radiologist report are, frankly, normal. I would demand to have them pull up all three scans for you and make them explain their interpretation to you with the scans open. Even if you can't make sense of the scans yourself (it is hard), you made them look at them AGAIN and think through what they are saying. You can also understand for yourself the degree of uncertainty in their interpretation. This is what is going to give you better odds of doing well ... better than all the folks who get killed by mistakes in diagnosis.
>Z<
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Leftfootforward, excellent news! May you stay NED for many years.
Yes, I've been asking myself if I should get a second opinion if things remain unclear. I really do wish I could speak directly with a radiologist and review everything and ask my questions. Have you been able to do that? I see that it is a different person each time, and don't know if that is a good thing or a bad thing -- a fresh pair of eyes vs. continuity. The other thing I thought of was to see if the radiologist I met at the ILC symposium would agree to review my imaging and give me an opinion. Do you think that could be done, or will they say I have to go to MSK in person?
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I do wanna address as much as I can, Stephanie I could so feel for that young woman of 34. I am short with words of how it must have been to have your dreams taken away from you. I hope you did not take wrong what I was saying about her life being torn apart, of course she is not the only one at that age, but her world it's exactly as when you were at the waiting room.You are an incredible person, and I and all over here are always ready to listen to your wisdom. Thank you.
Lisa I think what came across in the article was your zest for life, and the love for your family. Thanks for sharing!
Hey Artist thank you for your warmth. My MOM died at 96, in excellent condition, till…trust me, she was such a lover of life, we all still think she could still be on this earth.
Shetland your answer is the best!! Truly a full time job. So sad in reading your post. That's right, you have so much to do. All that goes on here, I see it happening in our lives also. Dani had a "nice" size met in the bony cheek, and when we were looking at the brain scans ( the head etc..) with RO, they noticed it, but it was NOT in the report? Really??Shetland regarding your question, of course a 2nd opinion is always good, not so simple though, because the way I see it they would not just give you an opinion but wanna see your whole record. That's what happens with D, when we were in discussion for Rads, the RO wanted all the past radiation hx, all the chemos blah blah….
Having said all that, I've been asking for ct scan for a while for the livers, even after Pet/CT, but Doc is basing herself only on TM's, enzymes and Dani's feeling. None of them are good, and that's why she changed her therapy again. I just think that CT are better modalities for this, but Doc does not.The truth is usually, liver mets are not painful until is very aggressive, the pain or uncomfortability would be radiating on the right side and/or even shoulder pain. But they should listen to the patient, I find that people feel and know what's going on with their bodies.
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Leftfoot good times!! That's great! Which tx were you on again?
Shelby everyone of your true friends here seem to be giving you great advice. I feel so bad I just saw this now, first warm enormous hugs your way. It is so true about people not being able to handle illness. And as Zar and others told you, zap it. It is very painful, it is not the way you envisioned it, but to spend your time mulling over THEIR weaknesses will distract you from the care you need for yourself. They must be scared and angry that this is going on with you, and many people I find that instead of dealing with the real issue head on, blame the person that is the least blameless. Hope you could rest after Cyber, Dani also had that done, the procedure itself was hellish with the screws pressing etc…but it did help at the time, and she was able to feel better not too much after that.
And Shelby, Stephanie was right on target. For sure it's something you should do asap, you need a Proxy, where you inform who could and should make decisions for you, and Power of Attorney. Who could access your info, finances, blood work etc… If your relationship is so volatile, will your sister be there when a tough decision will have to be made? Will they allow hospitals and doctors just to act in what they think should happen to you? All this paperwork is not foolproof, but at least it's something, it's best to be notarized with witnesses. It really gets my blood boiling, I've been in these situations many a times. Either the nurses come in and ask to do stuff the patient does not want, or for instance if you find yourself in the Hospital and your "real" friend is at your bedside they will not give her info if she is not listed on your directives.
Lita would you take a sleeping pill, Ambien maybe? Would that help.
Gina best wishes for Pauline.
Kandy a big hug for you. Are they thinking in radiating at all? And so sorry that you have no support from Mom. this is the time to def respect privacy and wishes, people don't get it!
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About that roller coaster, at the last visit with Onco, Dani has much pain all over, so she ordered Xeloda, which she started this last Saturday. Also, Onco showed us the results for FoundationAct, (she had done FoundationOne, and the blood circulating one), but this was taken just a few weeks ago, on this recent one, it showed that one of the mutations is KRAS G12D equivocal. (0.36%)(Trametininb and or Combimetinib) in Clinical trials (but it's not in NY she said, it was closed) meanwhile she will start her on Xeloda.
Zarovka, I know you are very interested in this. So KRAS really??? And it was not there before?Hmm this is an ugly one. Did you ever hear about it?
ERBB2 (which we knew already) which only Herceptin MIGHT be doing something for her, all others nothing. TP53 splice site 375g ESR1( and a bunch acoompanying that)
Onco did not say, but she did not look happy, she seemed worried. And we were so preoccupied with the Brain mets that we did not go into deep convo about the KRAS business. Also, they were not so helpful in giving us info on blood work results for prior week, saying that we could look at the portal, BUT the portal gives info only 4 days later, and then 3 days later again, so we (I) cannot prepare enough before next visit, which is weekly now. Not weekly with Onco, but weekly for infusion, but if I see something, I could ask or call attention, but there were so many things going on that I just did not have the energy to tell them they were being insensitive (in a nice way of course), but the hell with it.
We also met with new Onco Neuro, bcs surgeon that RO sent us to, told us that she needs surgery if things don't get better, but it was bothering me that RO had told us that she would do Radiation, so instead of going back and forth, we saw Neuro, and that day, 10 days ago she went straight from his office to MRI for the Brain, bcs she felt new things, and he saw that the MRI done 4 wks prior had not shown that. So, he called the next day that he communicated with all the docs, and he scheduled her for Radiation this week. She started this week. He said absolutely NO surgery, bcs there are so many tumors first of all, and surgery is really harsh and what happens in 2 wks if something else pops up, and she absolutely cannot afford to be off any therapy! I thought I was in a cuckoo house, but again no time to point fingers and tell them as Shetland said, this is a major Center, and you guys are screwed up. For 3 wks, we were thinking she will have to have surgery of the brain. Now she is getting IMRT, very precise Rads, and they will target many, not all. Including the mandibular.
Then, wait for it, Ins. calls that they will only pay for WBRT whole brain rads, which is very difficult, and rescinded of earlier approval. Then, only 2 days ago they finally approved. So Ins person calls me to say this, BUT then she tells me, you know now that she used her 3 line therapy the next treatment will have to be peer approved...(what was until now, it took a few days every time). And she started telling me you know ppl in this situation, I was like and how is your family doing? ... And this is with good Ins, my sil tells me they pay so much, I am so scared thinking what will be when we need to move forward? She was on a lot of treatment, yes, but there is so much still, she does stuff, what do they mean? And she said they would not pay for Clinical trials? Is that how it goes? Who pays for the Clinical trials.
Thank you everyone, it's been insane. But sure looking forward for Xeloda to kick in, and hopefully these Rads will do something!!
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momallthetime/- I am on Xeloda only. My targeted therapy was discontinued as it was affecting my heart again. So I have been on Xeloda only since March. I really hope it helps Dani like it has helped me.
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Momallthetime, this whole nightmare sounds so exhausting and frustrating for you and Dani. I wish you had someone to help. I don't know, a really sharp nurse navigator or something. Please take care of yourself.
Just to clarify, in my case wouldn't say anyone screwed up, just that I don't understand why they didn't come up with the ideas first.
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Mom - I don't know much about that muation but here is a trial open in NY for Tramatinib. I can't remember the hormone status of Dani's cancer. Can you remind me what it is now? If she has already had three lines of therapy she doesn't qualify.
Are they talking at all about immunotherapy. Trial costs are covered by the drug companies sponsoring the trial.
I know it is frustrating to deal with all these twists and turns. It sounds like the cancer is moving quickly and they are scrambling. What is Dani's pain level? How is that being managed.
>Z<
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Thank you Shetland and Leftfootforw, every bit of clarification helps. Yeah, wouldn't it be wonderful If I could have a nurse navigator or something like that.
Zar her status is ER+PR1% and HER2+ (FISH3) she was Luminal B from the get go, 3/3 at lumpectomy at diagnosis. At first biopsy of lumpectomy, it was ER+PR+(totally)and HER2- , this was rechecked at 2 other major Cancer Centers in NY, and then her status for Her2+ was checked again at these 2 Centers when she had a Iliac Bone biopsy. i just don't understand how she can't catch a break. And we've seen so many docs and they seem clueless too. Onco discusses it with a Tumor Board every week, but nothing revealing so far. Just keep hoping that Xeloda is the charmer. Xeloda/Ixempra/Herceptin
Ins. Person told me this is her 3rd line, i did not wanna ask her what she meant. She had many treatments since mets, so what does 3rd line NOW mean? She spooks me when I speak to her, she does not understand e/t, she does not seem to get that one could be active and be having a lot of mets, having a life. I don't want long convos with her.
Zar she has pain, but she is managing. Now she is going everyday for the Brain mets. I am waiting to see what the TM's and enzymes will show this week, I'll prob only know in the middle of the week at the portal, as I said they make us wait for results. I know someone that is going to Sloan, and he gets his BT results overnight. So it could be done, the system has to allow it.
When I asked about Immunotherapy they waved us off, like it's not for her....
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lots of love momallthetime.
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Dear Stage IV ladies .... I didn't know where to post this. I wanted to let you know that Glenna passed away. She was a wonderful friend ... I loved her and will miss her.
Bren
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Bren, I am so sad and sorry to hear of Glenna's(GatorGal) passing. She was so full of love for life and always so helpful to everyone here. She always provided us with encouragement and support. She often shared stories of times with her family. I remember when she posted pictures of some quilts she had made for her grandchildren. They were beautiful, and I am sure that her grandchildren will appreciate them for many years to come and think of their grandma when they look at them. I know that Glenna recently posted that she was taking a break from treatment, but I did not expect this news. I pray for peace and comfort for her family and friends.
Lynne
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GatorGal awww she was so sweet, I remember the quilts. Not fair. Thank you for letting us know.
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So sad to read this.
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Oh no......Gator gal was exceptionally sweet and helpful to me. This just brings me down. RIP Gator and thanks for all the uplifting encouragement.
Leftfoot, Great news! As Shetland says, "NED for many years to you"!
Shetland, Jeez it really says something about the complexity of dealing with all of this when you, who are so knowledgeable and up on research, are having trouble trying to decipher what is going on. It is exhausting and confusing to say the least. Then to add in having trouble with the insurance spider web like Momallthetime, it amazing any of us are coping. I am always incredibly impressed with all of the information "Z" has to impart and still find time for kids and fitness ect.
Mom, All I can say is my heart hurts so much for you and Dani and the horrid complexity of her situation. I hope there is someone to help you and give you some loving care you need.
Shelby, Even though we all advise you to keep your relatives at arms length and move on without them, I just want to let you know how we all know how difficult and heart wrenching it still must be. I mean, we all need our families to at least to acknowledge that we are suffering mentally, emotionally and often physically. Even better would be them being there for support. When it doesn't happen it leaves us wondering whether they love us at all? I so get it and hope you know we are all thinking of you.
Kandy, How are you doing?
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has anyone heard from Shelby
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All of you are just so amazing. I hAve spent the last 30 minutes rereading all of your Advice and just learned that GatorGal has moved to better and less painful pastures. Omg, she just gave me heartfelt advice... 😢
Thank you all for listening and helping me. It has been a tough week. I had Cyberknife last Wednesday which went very well. Only one lesion, very small at 4 mm. The struggle has been with my sister and mother. Even though we had a family counseling session, there is still hurt. I feel it's particularly on my part but also see it in the faces of my family. I'm still very mad at them and find I'm taking every opportunity to make them feel worse then they already do. This behavior is not me.
They have not apologized and justified their actions with not knowing how to handle my cancer. I simply stated THEY don't have to handle my cancer, I do. They have to support me which they are not doing with their painful outbursts. I also pointed out the comment about wanting to tell me how they feel for 3 yrs. The family counselor wasn't letting that one go when they got quiet. She prodded and reminded them they agreed to this session....
So, basically we got nowhere except they got a scolding and a firm but gentle reminder that our relationship (the 3 of us) has forever been damaged and don't be surprised if I retreat. The counselor explained that is human nature when trust has been compromised and pain caused. My mom tried to argue with the counselor saying how can she guide me to not depend on my family and the answer was " you did that on your own."
My mom has been staying with my sister until Sunday night when she came back to my house. I've just been sleeping a lot. Like 16-18 hrs at a time a lot. My mother commented that she felt like was walking on eggshells at my house. I told her to go back to shauna's then. I also reminded her that the last time she was here and at my sister's she felt used (exact words she said to me during the big fight) because all she did was laundry and cleaned etc. I asked her what she wanted, what did she think wAs gonna happen when I explained to her 3 times I was having surgery and not sure what to expect afterwards? I can't wait till she goes back to Missouri. And as it was mentioned, trying to keep our families at arms length is very difficult because I do wonder if they love me.
So, I thought I was supposed to start Halaven but my MO has changed his mind and waiting for something cuz he also changed my appt. Until after Nov 1st. My last doc appt we also talked about Navelbine and Ixempra. Any advice for all 3? Which one would you choose if given a choice? I still have liver mets, 3 medium sized tumors buts lots of little ones, multifocal. I equate it to a paint brush splatter. And bones mets everywhere, extensive through pelvis, spine and scapula and now ribs #4-6 on right side. Lots of pain with those, continue to increase pain meds.
Oh, and I took to heart what was suggested about a proxy. My sister being that she is in town wAs my decision maker, life insurance getter every thing. I have asked my very best friend( the one who took my to ER and stayed the night with me cuz she loves me and God forbid my sister's bbq of 10 people be cancelled or delayed).... ( see, I'm still very angry) . We are me with her cousin who is a lawyer to get things done. So, thank you again for thoughtful insight.
I've been so caught up with my BS how is everyone doing? I'm very sad to hear of GatorGal and after almost writing for 45 min. I'm still crying....
You all have been so wonderful, thank you so much for they've and support 💕
Xo, shelbs
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Shelby, your family sucks. You'll rise above it in time, in fact, I really think you already do despite the deserved jabs you give in your grief.
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