How are people with liver mets doing?
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Hit that one on the nail, you did. And I'm not sure the oncology background helps all that much. Too much guesswork even with more promising treatments. I'm going to NIH Monday. Gonna see what happens...unless of course the liver says no on Fridays appt.
And I am tired too.
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Kachina - It is exhausting. One would like to rely on one's onc, but in the end it is a job for them, not their life on the line. That said, there is a strategy to optimizing treatment and time, energy and money are hard constraints.
>Z<
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Just stopping in to say hello, hope others are well and thanks for the replies to a post back in August. My second full time job fired back up in August so I have little time to read and post. I (re)start chemo 9/18. (Yuck.) Trying to figure out if I may be able to take some time off!
Question: When they re-biopsied upon stage IV Dx, were the new tumors graded? My patho report did not specify a grade which I thought odd. (I'm going to re-read to check again...)
Reading about the immunotherapy trials is very exciting. I am convinced that they hold so much promise for the future!
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Lumpie - for my wife I do not think the tumor was graded when she was biopsied after her progression to stage 4. They basically checked for ER/PR/HER2 status and we ordered additional genetic testing
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Z and letmywifelive thanks for the info...it does make me wonder when to jump in.
Z when do you go to Japan? Kaaborg keep us posted while you're at NIH.
I will have another PET in November, so until then I am assuming my little monsters are still getting smaller.
I had a great day with family on Sunday. It's so much easier now since my son has moved back to the Dallas area. 😄👪👫💑💖
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Kachincolor, yes, everything you said. I find the whole clinical trial thing exhausting. I considered just two or three when my onc finally said that Ibrance + letrozole was indeed failing. The research, the appointments, the discussions. Knowing I'm in over my head, but that I am the person with the biggest stake in this decision-making process. Knowing that my onc cares and is good at what she does, but also knowing that oncs tend to not think outside the box. And oncs can be cagey when talking about trials because nothing has actually been proven yet -- that's why there is a trial. Realizing there can be a conflict of interest when they need participants, while I am not that altruistic -- I'm just looking for the best treatment for myself, which is appropriate. And then the whole thing about do I choose to go for a trial now, or wait to see if something better comes along. Doing this trial may exclude me from something better, but if I wait, it could be too late. It's all just educated guesses. Crazy-making. Right now I am appreciating the people who are posting trial info while I just catch my breath.
Kaayborg, you are in the middle of trial decisions. Sending you my support and love.
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Me too kaayborg, am waiting to see what you find out about this trial. It is indeed exhausting jut trying to somewhat keep up with all the information on top of everything else.
Thinking of you Lita
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I've been thinking of our dear Stephanie. She explained to me how important it is to make sure my records are sent to the Dr/Hospital I'm going for a second (fourth really) opinion. She said to me: your life depends on it! Wise woman that shared so much with us...
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Soent all day yesterday at MSKCc for the GDC0077 study- tests etc. Got back my TMs and they went down 210 points. Soooo happy. Looks like the GDC0077 is working. Will know for sure in a month when they do scans
Babs
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Curious... If you got a second opinion about care and treatment, do you check in with that doctor at major turning points in therapy/progression? How do you navigate that relationship?
I am just wondering about what to plan for and expect. I am lucky to have a great 2nd opinion doc who seems (so far) to be receptive to my checking in. And if my doctor options ever changed (due to changes to in-network providers), I would definitely expect to go to her. (Right now, she is not covered by my insurance.) Just wondering about how to manage/navigate that relationship going forward.
Also, anyone have thoughts on when/whether to seek an opinion at medical facility (such as Hopkins, Mayo, Anderson)? Did you do this? What was your decision making process? (If there are other good forums on BCO on this topic, I'd appreciate being pointed in the right direction.)
Thanks!
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Lumpie - my biopsies didn't have a grade but included a Ki-67% and described how differentiated the cells were. The Ki-67% rate is the proliferation rate ( > 20% being high, 10-20% being moderate and < 10% being low), and, along with how differentiated the cells are (well differentiated - most like normal cells, poorly differentiated - not like normal cells or undifferentiated - even less like normal cells) will translate to the grade.
Babs, great news about your markers and that GDC0077 is working!!
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That is great news Babs. Very happy for you. What prompted the pik3 testing?
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hi all,
Been away for a while, again, as I do occasionally.
My belly is bloated as a 8-month pregnant, have edema on legs and arm.. yep the liver is struggling. Yet, TMs going down. Hope I don't pop like baloon soon
Hug
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Hi Stagefree - I was thinking about you! What meds are you on now? I took a trip to Turkey last June (Antalya/Istanbul). We left the Istanbul airport 2 hours before the attack. After a lovely dinner on the Bosphorus with my phone blowing up with calls, I spent all night watching the news and the next day (despite a destroyer moored behind our hotel) went sight seeing at the Blue Mosque and Topkapi - very few tourists. An amazing trip. Hoping you are getting better besides belly ascites. Here is a pic of Antalya coastline we scouted for a film. No plans to go back now.
Claire
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Hi Stagefree - It is so nice to hear from you. I wish your belly recedes as fast as your tumor markers, but that should come in time. Sending strength to your liver ... it is an incredible organ capable of miraculous regeneration.
Babs - that TM drop is fantastic news. Apparently this is the treatment that will control the cancer.
>Z<
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Lumpie - Getting a second opinion is good but becomes tricky at certain decision points - especially when the two oncologists do not agree on next course of treatment. In my opinion, at times it is hard to pick one treatment vs the other since one never knows how well an individual will respond to a treatment.
So when you pick one option you will not pick the other. Although all MOs are professionals, they are also humans. It may hurt their ego a bit but they have plenty of other things to deal with in a day. The important thing for us is not to switch too frequently and build a trust relationship with someone. Also remember that most of us have good common sense and real life experiences about this disease but end of the day we rally do not have the needed medical knowledge. At some point we need to trust a medical professional and not take treatment decisions just based on our gut feeling. Otherwise we may just realize that no doctor is really taking care of us. Thats just my thought.
Babs - great to hear that you TM Is dropping. Happy for you.
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Husband11. I was tested at MSKCC for their Imoact Assay study which is where they test forover 300 abnormalities. They only found the one
Best
Barbars
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Babs! Yeeessss! So good to hear that you have a 210-point TM drop after doing all the trial rigamarole. So, are you saying that the Impact assay directed you to this trial?
Regarding second-opinion docs -- First, I am happy with my onc and trust her professional opinion. I do have a second-opinion onc who I have checked in with a few times in the past six years, and that has worked for me. I talked with her about trials at her institution recently. But now I am trying to get in to see a super-onc who is not within driving distance, so I can get her input when things get trickier. Just to have more than one really good oncologist's mind on the case, for brainstorming ideas. I keep feeding that place records and they keep asking for the more recent ones. I think I finally got them to understand that as a stage iv patient I am just going to keep generating records, so they should just schedule me. Wondering if anyone has a long-distance second or third opinion doc and how you manage that?
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Babs this is so exciting, when i read on your other post I could just imagine NED
Kaayborg may I ask whom will you be seeing at NIH?
To be honest i am extremely cynical about docs. I find they seem to care, but the distance is there. Unfortunately the thinking is the bigger Centers in the bigger cities would be a more logical place to be at. Newer ideas, protocols etc...( oh my gosh I also still have a hung up with Dr. Kildare, it's true
) BUT they are not really approachable. Questions are answered via email. SO connotations, intonations are all questionable. The emails gotta be very precise, otherwise surely they won't answer. And these days docs are being bought off by conglomerates, they are literally scared of saying the wrong thing, or ordering one more test (and then being harassed by the biggies WHY they ordered that). Yes, i am bitter, because in NYC at large Centers, with the top doctors that has been my experience. They fake it yes, that they are interested and care, but even if it would be true, they are extremely limited in the amount of time they could give, and docs that want to move ahead have to go into some kind of research and the trial docs they all have to give a major amount of time to be in clinic so they cannot possibly worry their heads with one person's issues, concerns, pain etc...And i truly feel i am chasing the storm, pardon the pun to all going through the storm, i try to understand all that the wonderful people here try to tell us, but it's really hard for me to get it together and persuade these docs.That's where i find ourselves now, i don't think there is much promise in this trial for Dani, her #s are creeping up and up, and they still want to hold on to it, it's a trial, so how could they know that it will work in a few weeks, if it did not in over 2 month. Tried to get an appointment with Onco to discuss this, and she pushed it off, saying, she is thinking of different approaches, but stay the course now. Also, just to get them to actually discuss those ideas with us is a losing battle. We get patted on the head, "we'll let you know". Of course I am gonna try again and again, and I need to do my homework, which is very hard for someone that really can't understand much, and my brain has turned to mush.
Katchincolor your rant is extremely on point, i've been talking and thinking about it for a very long time.
Letmywifelive when would they be coming out with this tx? Sounds good indeed.
Zar thanks for always keeping us abreast of things, and all your support.
JFL interestingly on Dani's last biopsy they did give a KI67 but on this liver one they did not. I wonder how important it is at this point. Lumpie re: the grade I don't think it matters once it's stage IV
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One way grade could matter: My onc said she liked Xeloda for me as opposed to IV chemo right now, because it is taken daily, and with a slowish cancer, that gives us a better chance the chemo will be there at the right phase of the cell cycle. If grade helps characterize the speed of the cancer, wouldn't that help the oncs choose a treatment and know how much time to wait for a new treatment to work without letting things get out of hand? But maybe the symptoms, scans, and TMs do that anyway without needing to know the grade. Just musing here.
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Hey Ebru, I was also wondering where you have been. Glad you checked in. Hoping you have had a nice summer. Hope the belly goes down soon. Prayers for everyone.
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Afternoon ladies,
On several topics,
Sending records, tests results, scans should be completely unnecessary. Many hospitals and docs are online where all records can be viewed between institutions. You do have to grant permissions for each institution and Doctor . I now do this for three institutions, sometimes the schedulers themselves are not aware of the online feature. You may have to get to the correct person, once done, it makes life much easier. All tests, scans, etc. can be viewed by the patient as soon as they are read and released, usually within 1 to 2 days upon agreement by your docs.
In my particular situation, I need to see results prior to the exams, so I can prepare and think about the information I need. Getting the results in a docs office does not work for me.
On expectations from your treatment teams. In choosing a MO or institution, its important to identify your expectations and comunicate them clearly to the institution and docs.
My criteria:
Expertise in BC.
Specializes in BC ONLY.
Agrees to release test results as indicated above.
Research MO and has a team doing research/ publishes papers.
Length of practice and survival rates among Stage IV patients in his/her practice.
Do they have some, few or many patients similar to my mets situation and treatment plan?
How are similar patients doing as a group?
Is the MO reachable or him/her assistant?
Can I ask questions online (in some form) and what is the general follow up?
Can I view the actual scan with him/her?
Can I discuss alternatives and if opposed, do I get a satisfactory answer?
When a protocol fails, how does he/she explain the treatment change and the SE's that may occur.
My part, Try to be focused and clear in my questions, be as specific as possible.
Make notes, occasionally check with an alternate MO or institution, if an alternative option is presented, discuss with primary MO as to why or why not.
Stay as healthy as I can.
I would prefer my docs to show warmth in my treatment, but I have had docs who were excellent and showed zero warmth. All I expect is they are very, very good at what treatment I am undergoing.
My experience of 24 plus years with BC and reoccurrences (last 3yrs, stage IV).
Kathy
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Kathy - I agree 100%. I really don't care if my onc "cares" about me. I feel like "emotional support" is a red herring.
I want my onc to know the treatment options, when and how to implement them, and their efficacy. I'll care about me. Unfortunately, I live in NM and I haven't found an onc nearby that cares about me OR knows what they are doing. I have been able to get access to scans and blood tests without an office visit, which is key for me to. I study a lot, consult with experts out of state.
Fortunately, I've been on my first line treatment for a while and this has given me time to get my sea legs on this crazy trip. Right now the NCI standard of care is pretty straight forward and makes sense. If things get more complicated, getting the right care locally will require convincing my local docs to follow protocols they don't currently embrace. Not sure how that will go.
The right strategy, in the end, depends on the options you have at hand. You ladies in California and NY have it real good. Just sayin' . I follow your treatment protocols closely....
>Z<
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Shetland Pony- I had the Impact Assay about 2-3 years ago. Every time I need to change treatment due to progression my MO looks for a study that she feels could be right for me. This time there was an opening in the study I'm now in which targeted my one mutation so she was very keen on my trying it. Due to the 210 pt drop in TM's we're all thinking it's working!
Z you're so right! Being at MSKCC gives me entre to so many things and studies that I doubt are available elsewhere. And, I think I lucked out with my MO -she cares and has access to so many treatment options. Funny story- I have a friend in NC who recently found out that she had progression. I wanted her to come to NY to see my MO. She went for a second opinion at Duke and they referred her to MSKCC- and my MO. That too made me feel comfortable with my MO.
Babs
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Babs - I speak for many people when I say that I appreciate the time you take explaining the treatment options MSKCC presents you and how they play out because we benefit from knowing what the highest standard of care looks like. I will eventually head for the coasts for care I am sure, but it's a long haul and I need know when I really need to get out of here.
That said, it's chile season here in NM, it's cooling down and life is very good.
>Z<
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I love New Mexico. I was actually planning to move out there back in the late 80's, but then I met my husband-to-be, and we decided to stay here in California.
I treasure my memories of driving all up and down New Mexico, from Albuquerque to Santa Fe to Taos, with my dad one spring. I paid for his trip as a 'thank you' for all the wonderful road trips he took us kids on when we were young. We had a fabulous time, and I loved the food there, too.
Blessings,
Lita
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Lita - because of you now I have fond 'memories' of NM and have never been there.
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anyone been in docile in the group. My good friend was asking me what to expect. I have only been on AC and taxol.
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Hi Leftfootforward. Do you mean Doxil? Because it is the same as Adriamycin, which looks like you have had that one! Who can ever forget the Red Devil..
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