How are people with liver mets doing?
Comments
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Kimberly so sorry you going through this mess, hope they find soon what's the rash about.
Kaayborg – I think about the ifs all the time. My thoughts are the opposite, are we wasting time by being in this stupid trial, instead of a strong chemo? In the trial, she is not allowed rads which might help quite a few things, and it's wait wait wait. The numbers I see in the BT are scary, but Onco seems convinced it's worth to wait another few weeks. Based on what? Nothing, bcs it is a trial. So…there will always be that doubt. It's absolutely true about the wash out time, remember Dani couldn't get her Enzulatamide on time, we were so aggravated and when it did come it was already the 3 week mark for the wash out time this trial needed, so she jumped in and went for the trial. Prayers and prayers. To be honest, this is the constant worry that Dani goes through all the time, there is so much to be done, the kids need so much…
Very interesting about the platelets, 15 flights huh, okkkk.
Ebru such good news!
Zar your take on it was hilarious.
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I will be starting THP in a few days. I did TCH for my original Dx. Wondering if anyone can comment on hair loss: did it take about the same amount of time before your hair started falling out on the second go-round... Or did you lose it more quickly? Leave it to me to be in the middle of job interviews when I need to re-start chemo! So grateful to have a place to ask these kinds of questions.
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Bluebird, sending you support as you wait for scan results and drug decisions.
Kaayborg, I totally see the problem. You can't afford three-week washout periods and red tape delays. How frustrating. What does your onc say about this problem? He or she needs to be really proactive in getting you into an immunotherapy trial. Is keytruda an appropriate possibility for you? My onc mentioned something about getting it off trial on a compassionate use basis... Also I wonder if trial doctors would be willing to negotiate anything in order to get another person signed up.
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Shetland, always good questions from you. I mentioned the washout issue at NIH and they came back with explanation of why the rules are rules. No room to wiggle on these trials. I am going to try to be more proactive about the off trial possibilities. It takes 1 or 2 weeks for insurance approval so I am going to ask if you can get preapproved or must you wait until you know you're going to use it. Would really prefer the trial for a combination possibilities but one must take what you can get.
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Kaayborg, that's a good idea to get the approval process started. In my experience, often an insurance authorization is good for several months or maybe even a year. It seems to me that a benefit of not doing a trial is you retain flexibility and can do or not do whatever is best for you personally. Assuming you can get access to a promising drug outside a trial.
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Lumpie it totally sucks - let's see if someone has an answer for you.
Kayyborg certainly worth asking insurance, at least you'll have one problem down. But also, wouldn't the trial docs be the ones having to make this phone call? So you'd have to know which trial you want...
At this time waiting on some BT results and urine specimen, D had a bout of blood in the urine, only gonna know tomorrow and for the urine specimen only maybe Wednesday, so again, she cannot plan to go anywhere they told her in case they have to call her in. Anxiety and anxiety. It's quite resolved at this time, so now she feels silly that she mentioned it. But the last time, things got bad pretty fast, so i told her she has no choice. Let you know when we know. But the nurse said oh we never heard about that...and the last time in her own Onco's office they said the same time, i cannot believe that she's the only one that this happens to. Crazy.
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Anxiety and anxiety...that surely resonates. So sorry for Dani to be stuck in the wait. I agree all things must be mentioned though. Hope to hear good news soon.
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Mom, must be hard to wait for results. I am rooting for Dani.
Kayboorg, I also agree it is wise to try to get the pre certification for the medication approval now, since that process is just one more delay before one can start treatment. Might as well have it ready to go. My insurance company approves the expensive medications for a year at a time. Even if you don't use it in the next year, a renewal authorization is much quicker in my experience than the initial approval. I understand your concern about the washout period before a trial. There has to be a better way!
My week has kicked off with a bang. My cancer center has lost my liver biopsy. The only reason I found out is that my DH is a doctor and has access to my medical file. The MO or center didn't even call me to tell me. Per the notes in my file, the specimen was supposed to be sent to Caris for genomic test. It wasn't sent to Caris because it was automatically sent out to another company for a FISH test. Caris inquired about whether they should wait until the sample is returned from the other company or receive another sample. No response given to Caris. Other company indicated that they received my sample but that the sample sent was EMPTY. Seriously? All the time, money and risk of a surgery and they lost it. And didn't tell me about it? I can't believe I might have to do that all over again. This is just beyond belief.
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I do not have words, JFL.
Kaayborg - nothing to add to what is being said except for hugs and love. I want to say peace, too but anxiety seems appropriate.
We are going through rough crap. Is everything fine? Nope. It is not.
>Z<
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JFL, that is just off the charts unbelievable. Urghhhh!
Thanks all for the info regarding insurance approval. Hopefully I can get something lined up for off-trial immuno.
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JFL. I am speechless. So crazy!!!! Sending you a great big hug
Bab
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JFL I am surprised that things could still shock me. You made me Human again. Beyond beyond........
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Got this through someone with Ovarian Cancer https://idmprogram.com/cancer-proximate-causes-can... as if we didn't know. After reading this, I KNOW for sure, Dani is a guinea pig. They have NO idea what to do. Knowing what she went through and is going through, with every disappointment, she could be their poster person.
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Lumpie I think the hair loss will start at the same timing as it did before. It was between 2 and 3 weeks for me with taxotere. When the fast growing hair follicles start dying, the hair loss will begin. Sad to have lose your hair again and the timing is a bummer.
JFL Unnecessary trauma and serious mistakes are so frustrating. Especially to us, we're JUST fighting for our lives! That should be enough but it's not. We have to be our own advocates, too. When did THAT happen? For me it was In November of 2000. And, I wouldn't be alive now if hadn't challenged the MO and BS I had back then. (My MO fired me because I went to MDA). My BS said if I wanted to manage my own healthcare I couldn't be her patient. Yes, I never went back to either of them. If I had followed their plan, I would have died about 10 years ago.
I'm grateful that we all know the truth and are bold enough to keep double checking on everything.
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JFL - checking in, seeing this I am infuriated for you. I hope this is resolved with the saample being where it was supposed to be and in the wrong place there, saving you more trauma.
I will be off Xeloda for three weeks total --- was to be two weeks, but another week added due to a recent drug reaction to prednisone / Benadryl it seems. Heart racing and covered in under skin hives, hot and feverish. So nothing but the thyroid pills for now.
That said - my liver gave me a lot of pain when bending, turning to the side and sometimes gnawing at me when the mets were going on at the beginning. It was also the first to calm down when I started treatment that worked for a long time. And when cancer cells were dying it hurt a little. It is a good modulator or what is happening for me. I am listening to my liver now, it is calm so far during the two weeks off. I am trusting my body to tell me if the cancer is active again, liver foremost.
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Thanks for listening to me vent. My DH talked to my MO both yesterday and today and no hope so far in tracking down the biopsy samples. Was given a confusing, ridiculous story, passed along from pathology about what happened. It all sounds like BS.Someone is trying to CYA for losing my samples. I feel sick.
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Can u imagine if they totally screwed up and put your sample on s/o else's plastic slide????Oyyyyy i'm telling you if they did that to you, for sure this could happen. What are they promising you, a lifetime of free Spa, no copays? docs comg to the house? Give your time and energy that you spent coming to the biopsy back to you??? WHAT are they saying?? Oh do they cover one for another, there is a white wall as wide as the world!!!!!!!!! watch out.
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JFL, I am adding my feelings of astonishment and dismay to all the others here. I have heard many horrific stories, but this one is right at the top of the pile. There was negligence and incompetence somewhere along the transfer route. In any case, it should be investigated quickly and in depth, not only in the hopes that your biopsy samples will be found, but also to prevent a repeat of this terrible story. I am so sorry you have this added stress on top of everything else. My thoughts are with you.
Hugs and prayers, Lynne
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Interesting read from Momallthetime, posted above https://idmprogram.com/cancer-proximate-causes-can...
Mom - I moved your link here. My comment on this is oh bother !!!! So I am understanding a little more. That if they take a biopsy and test a tiny bit they will get one answer. But if they check another section there could and seems WOULD be even more mutations. So they don't really know what they are throwing the chemo at? And if I get another biopsy of a lymph node mass then it could come back different than the first from the lumpectomy. But actually all those cancer cells are still alive and well, they just found the other ones they didn't find the first check.
Well so much for getting a new biopsy to make sure the right chemo drug is being used. What I have been on is working for now, or so it seems, sometimes I wonder and will have a scan - postponed until Oct 2 due to prednisone reaction.
JFL - I'm sorry but this reminded me of 37 years ago. My sis and I went to Tennessee and we took rolls of film. But the film was all thrown out with the trash. The manager at film development station said the film was in a black plastic bag to go to the main center and the garbage was in a black plastic bag too, both by the door. Got to the center and the garbage was with her, someone had tossed the film in dumpster before she left the building. And that is just how easy it can be when professionals like in the cancer industry are not organized. Not saying your biopsy was tossed, I think it is at the other building.
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JFL- no words! This negligence is completely off the charts and not justifiable in any way. I'm so sorry.
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JFL - What a blow to "lose" a liver biopsy. Please demand a complete investigation and alert your insurance carrier so they can have their legal team assist as needed; sounds like prima facie negligent handling of bio materials. Not sure of FL law, but CA law is pretty clear. Make sure this doesn't happen again. Agree with 50's girl all the way. So sorry for this to happen to you. I had round #5 of abraxane + decadron today and thought of you.
Z- excited for your immunotherapy trip. Wishing all a painfree week. Bluebird - my arms and legs speak drug rash all too well. 0 -
Oh Jeez JFL, what an unnecessary stressor for you. I am hoping it turns up for you so you don't have to go back! I feel your pain....
Bluebird, I hope the hives and racing clear up soon. Sometimes those breaks can be a very good thing though. I just had 3 weeks off and my TM's went down still.
kaayborg, I'm feeling your stress and hope things pan out in the right order so you can get into a trial.
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JFL, that is terrible! I feel for you; a helpless feeling along with anger, frustration, and dismay. They owe you big time. Seriously, tell them you need a paid weekend at a spa to de-stress from this. I wonder if a liquid biopsy like Guardant-- paid for by the hospital-- could be used if you are not up to a repeat biopsy. It may not assay as many genes, but it is easy to do. If they do find your tissue, they had better DNA test it to make sure it is yours.
I have some good news to report. My (proven dependable) TM is now in the low normal range, thanks to five cycles of Xeloda! I am happy to have a breather. On the other hand, I'm getting sent to the gyn and gastro oncology departments to make sure nothing sinister is going on with upper gi tract or ovaries because of gerd and minor bloating, and it's ILC. Scared of tests.
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Bluebird incredible article no?? You got it right about the biopsies. But those are the lemons given, so I guess lemonade it will be. Hope you holding up.
Shetland that sounds really exciting. When will the scans be? It's better to have it checked, you will feel more at peace also.
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Still waiting on the BT results, not too worried because the symptoms subsided but the Lab said we would have the answers today but MO said it's not ready. Let's hope for the best, might as well.
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LALady - Interesting point. I am sure the insurance company will be interested in finding out they paid for a liver biopsy that was lost. One reasonable place to start a fire. There are probably others.
>Z<
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Shetland. That is great about your TM s. Keep us posted on the gyno and GI visits.
Bab
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hi
My daughter has been diagnosed as stage four her2 positive with mets to brain and liver.
In 2013 she did the taxatere and herceptin with skin sparing surgery.
She has just completed wbr and is very tired and nauseous.
The onc is supposed to be one of the best but after today I am very concerned.
Instead of the Cleopatra treatment I assumed my daughter would receive the onc has decide to do nabeltine? Instead of taxatere with herceptin and perjeta.
When I asked if she had every prescribed this before she said no as she had very few relapsed patients and as obviously the taxatere hadn't worked before she was trying this.
The rest of the consultation was about getting affairs in order.
Scary stuff indeed!
I am going to get another opinion but need your help please.
Has anyone been on this combination as first line treatment?
Xx
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!!!!! bump - see Dolittle just above mine.....
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Dolittle you sound so much like me. How old is your daughter. Anyway, DD's Onco also had big hopes for Navelbine, it did not work for her, but it's suppose to be very good. My DD has a very aggressive type, nothing takes to make it regress, she's been at it. How many lesions in the liver? Would they radiate it? Is it in one lobe? The wonderful ladies here will chime in. WBR could be very helpful, go to the Brain thread also. Namenda is recommended. The best I could tell you is to go to at least one more opinion, you should feel better about the decision. If doc herself is telling you that she's not used to ppl with mets, then maybe it's time to look elsewhere. Keep us posted.
Dani's BT came back with very low platelets, and HGB, but still manageable, we are used to seeing this in her results. There is blood in the Urine, but they are not doing e/t crazy now, she will retake the tests next week and check on the status. Culture did not come back yet. So we are happy she does not have to go in to the Hospital.
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