How are people with liver mets doing?
Comments
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I appreciate all of the input, even the scary stuff. I assume it's different everywhere, but they did not tell me if I would be sedated or not. I will call Monday and ask, and I know it's a local anesthesia, but I am curious who was putin a twilight sleep. I would prefer to be OUT.
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I've had 2 liver biopsies and just felt tired the same day. I went back to work the next!!!!
Babs
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I've had 2 liver biopsies and was fine each time. I attended a work party I had planned later that evening. Sat a bunch and was sore but ok.
Both times I was awake, they only used local.
Icing was key for me to keep most pain awa
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I have a terrible medical phobia but got through it easily on some kind of valium like drug ... valium but stronger. Totally awake. I made a point of not paying attention to what was going on and the whole thing went fine.
I could not drive because of the sedative, and my husband said that I behaved oddly until the sedative wore off in about 6 hours. Probably a dinner party on the same day is not a good idea if you choose sedation of any kind, unless it's with very close friends ;-)
Next day I was fine but glad I did not have a very ambitious day planned.
>Z<
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When I had a bone biopsy years ago, I was on something like that. I kind of knew what was going on, but didn't have a care in the world. Something like that would be fine. My dinner 'date' is two days later so I'm going to keep it for now. OMG I was so anxious last night I couldn't sleep. I finally took a xanax at 3 am. I WISH I could at least go for a walk! (In a boot with a sprained foot). Ugh
Does anyone know if they will be able to tell right away if it's cancerous or (off chance) not ? I know it depends on the facility, but if the capability is to have some sort of answer available in, say 24 hours, I would want to know that.
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Stefajoy - they can tell as soon as the pathologist looks at the slide. That could be within hours, but when they tell you is a whole different ball of wax. It's a matter of the procedure in your facility.
The interventional radiologist was sure my spots were cancer before biopsy just looking at my CT scan. I wanted to go into the procedure with some hope, but he was a straight shooter and told me flat out that the spots were cancer. And they were. The only question was what type.
Not sure how much wiggle room you have with these "shadows", but for me it was good to know sooner rather than later that the cancer had metastasized to the liver. You can just ask the guy who will do the biopsy and see what he says.
>Z<
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Stefajoy,
I had the "you just won't care what happens" meds before my liver biopsy, it was a breeze. Sleepy after, just fine next day. MJH
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I just had the "freeze" spray over the area and was just a bit sore until the next day. I don't think they ca put you totally out because hey have to instruct you to hold your breath, take a breath ect. I only had a brief moment of some discomfort but my nerves were SHOT! I should've taken an anxiety med.
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i too have been on a weight loss ride since Nov 2015. Went from 132 now at 115ish. Dr says metabolism has changed didn't seem concerned. I'm ok with it, back to wearing a bikini and size 6. After chemo I would crave junk food, big Mac etc but most of time refrained for fear of throwing up.
Just gotta keep dancing!!
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Well, my biopsy tested positive for BC. They are waiting for the FSH results, but the make up looks the same as my primary. Highly ER+, PR- and HER2 equivocal, but the FSH will tell us for sure. they are sending it to Foundation Medicine, but due to the early stages of my treatment (i.e.: there are still a lot of good choices of standard treatment for me) it be unlikely they would recommend something different than what my ONC would choose for me. There is a trial at my hospital of keytruda with Ibrance and Palbo, and that is a choice but I got the feeling it's not his first choice for me. Basically my two other choices are Xeloda or Faslodex with Affinitor. So I'll be doing some research this week. No treatment decisions until the FSH results come in next week.
Deep breath.
Stefanie
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Stefajoy - I am glad you got the info before the weekend. I want to officially welcome you to the livermetsters. I have liver mets. No plans to check out any time soon. Two kids. Much to do. I am sure you feel the same.
Many here will be interested in your foundation one results and whether and how the results inform your treatment. One thing foundation one should tell you is your ESR1 mutation status. Studies suggest that activating mutations in ESR1 are a key mechanism in acquired endocrine resistance in breast cancer therapy. In other words, if you have ESR1 mutations, you may have aquired endocrine resistance and that would suggest Xeloda over Faslodex.
Gentle hugs as you process this, but a new treatment and a new normal are around the corner. If you are at City of Hope (I believe the keytruda/ibrance trial is there?) you are getting the very best treatment.
Breathing is an excellent idea. Enjoy the weekend. It's the best revenge.
>Z<
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I'm strangely calm and not that upset. I think it's partially because of these boards, and a couple of other liver metsters who are doing just grand at the moment. This is just an opportunity for me to try a new treatment and, hopefully, see it work before my eyes. I mean, I have Stage 4 BC. It would be naive if me to think it would never move around in my bod. I know some bone only ladies get lucky and get more bone only years than I got...some many more....but some less. So I'm pretty ok with the close to six years (in July) I got. And so far nothing is happening too quickly so I think I'm doing pretty damned good under the circumstance. It is a bit strange tho how unaffected I feel. Hmmm... well, maybe I'll melt down later. For now, I'm nursing a sprained foot (almost better) and a bad cold, so I can get back out into the beautiful spring sunshine and enjoy life.
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Stefajoy - After 6 years of dealing with this, it makes sense you would take it in stride. Not quite there yet, myself, but you are an example for all of us. Ten years from now I believe many of us will look back and wonder why we bothered with the drama. I agree that your cold and your sprain are your biggest problem at the moment. Hope you are out in the sun by Sunday.
>Z<
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It is 2:00am Saturday. I can't sleep. I am scared.
KD was admitted to the hospital today for Dehydration, Fever of 103, WBC of 100 and a bad case af Thrush. Earlier Friday morning, she was talking incoherently and having trouble with her balance. After receiving fluids in the ER, being moved to a room, and getting infusions of all sorts, she perked up around 7:00 pm.
Just now they came in to take her vitals, and her fever is back to 103. It took her 10-12 minutes just to take two Tylenol. Her speech was almost non-existent. It was an adventure to assist her to the bathroom 10 feet from the bed.
I keep telling myself that it is the medication, the infection and the Thrush, but my real fear is that she may have progression to the brain. I told the nurse to carefully note what she witnessed and that I wanted to request a scan of her brain.
I am hoping to get to talk to her MO later this morning. We are here for four days minimum while they treat the Thrush and administer Neupagen. Praying for a miraculous turn around later today.
Sorry, I just had to get that out of my head. Maybe I can sleep some now.
Louis
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Louis. I'm praying with you for a miraculous turn around!
Babs
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Louis,
From what you described, it feels to me either something to do with either reaction from medication, infection of some kind or a bad viral thing. Sometimes viral disease can affect balance and speech as well. If this was related to progression in brain, I doubt if that would would have happened so suddenly, so severely and with fever and thrush.
The fact that she is still in ER is not great though and the doctors there quickly need to get a diagnosis of what is going on. Sometimes even non-cancer related stuff needs very prompt and aggressive treatment.
My prayers are with you and I am very confident that things will improve soon even though it seems very scary right now. Hope you and the kids are keeping strong.
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KD's Husband,
I am sooo thinking of the two of you right now. Fever and infection can cause plenty of confusion all by themselves. You must feel so upset and concerned. Once these acute issues are treated, I'm betting she will be better, though washed out. I experienced a neutropenic fever with viral bronchitis 2 years ago when receiving chemotherapy for the Stage 1 breast cancer. I will tell you that I have never felt sicker; I was also dehydrated with low potassium.
Hoping by the time you read this, things are much improved. Love and prayers. MJH
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KDsHusband - Thinking of you and KD this morning. Hope to hear from you soon that things are improving.
The silver lining may be that the fever has stopped the cancer. 103 is a high fever. If she held that fever for several hours, it probably killed off quite a bit of cancer. It takes some cojones, but you might consider limiting what you do to reduce the fever. There are many people who have gone into remission after a serious bout of fever.
It must be terrible to see your lovely wife unable to speak. My gut tells me this is not a brain tumor, she's just very sick with something. Something non-cancer related, but exacerbated by the treatments, etc.
Make sure you get sleep, take walks, get some other family members and friends to take turns keeping an eye on things. If she is totally out of it as you describe, you need to be on the top of your game. I am sure it has been a harrowing few days.
Please check in and let us know what is going on.
>Z<
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thinking if you Louis. I too believe that this is related to a non cancerous thing. May whatever it is resolve itself soon and may your wife begin to feel better soo
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Louis, sending good wishes to you and KD. I hope things are resolving. Keep advocating for your wife.
Stefanie, I'm glad they will do more Her2 testing, as it is important to make sure of that. I agree with Z that the ESR1 status -- included in the Foundation One test -- could be helpful for deciding if anti-estrogen or chemo would be better for you. For some reason, I am guessing you will end up with Faslodex + Afinitor. I can tell you that I feel quite good on it. As far as Keytruda, I read something to the effect that anti PD-1 immunotherapy seems to work best when there are many rather than few mutations in the tumor, and a genetics doctor told me it is particularly effective on micro-satellite unstable tumors. Your F1 report will tell you if this description applies to you, but I doubt it will. I'm raising my eyebrows at myself right now because I am not an oncologist, but that is my intuition nonetheless.(Anyone who wants citations about my anti PD-1 comments above, please ask and I will try to dig them up.) On another note, I am so happy to hear you sounding calm and grounded, and ready to enjoy life in spite of this stuff.
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Here is my report on yours truly. This week I had my first scan since starting Faslodex + Afinitor three months ago. As is usual for me, the results are somewhat ambiguous! But overall, my onc thinks it is good enough that we should stay the course right now with these two meds. The main news is that the liver lesions have decreased in metabolic activity since my scan three months ago, and my onc is quite happy about that. Some of these lesions, however, are mildly larger, and we hope this is just because of necrosis, which can cause a temporary increase in size before tumors shrink. In a couple weeks I will have TMs done, and I really really want to see them heading the right direction.
The other finding is something new and also ambiguous: two small opacities in the right lung. The radiologist thinks it is likely inflammation, and my onc and I agree that this could be related to Afinitor. I have no lung symptoms, the PET/CT just sees everything. So I am not worried about Afinitor pneumonitis right now. And I refuse to worry that it might be tumors if the radiologist says inflammation.
Keep calm and carry on.
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Shetland Pony - That is wonderful news! Call that a great scan and carry on.
>Z<
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Shetland, that sounds positive enough.
Here is to another three months of dancing and slaying dragons!
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Shetland. Sounds like your oncologist feels it's a good scan Celebrate🎉🎉
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OK, I am back to report first and foremost that they did a CT of the brain and we got an "All Clear". That was relieving to hear, and now we have somewhat of a baseline scan of her brain in the record. It's not an MRI, but it is something
What we are dealing with is her WBC count was at 0.1 when the normal range is 4.0 - 11.0. Therefore, that made the Thrush even worse. The MO making rounds this morning said that she was septic, that the virus was in her bloodstream. He explained that when someone is septic, then certain narcotic meds can have a significantly magnified effect. That explained a lot, since she was taking a slow release morphine and some hydrocodone.
So, they are treating her with Neupagen, Vancomycin and some other antibiotic. She is also getting two units of blood.
She is communicating more, but half of it makes no sense. I am expecting that to improve tomorrow. I'm thinking we will be here awhile, perhaps a week after all is said and done. Oh well, whatever it takes.
Thanks to all for the positive thoughts and encouragement. It's easy to get wrapped up in a worst cas scenario when you can't sleep at 2:00 a.m. in a hospital room, huh? Thank you also for allowing me to take part here on behalf of "my princess".
Louis
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Louis - That brain scan is a huge relief, but sepsis is serious. It does seem like she is on the mend. You have one tough princess on your hands. Please do remember to take care of yourself. It's a long haul with these things. You are the cornerstone of her healing.
>Z<
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Great news Louis - what a relief !!!! She will be back to normal life soon. Take care of yourself too.
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Louis, I am glad to hear that they have identified the source of your wife's symptoms. My DH had sepsis twice last year. It was scary, but he did recover once the antibiotics took hold. It does hit people hard. Even after the sepsis has been treated, people usually take some time to regain their strength and feel completely normal again. Don't be alarmed if your wife takes time to get her energy back. That will not mean that the infection still remains in her body. It's just the way the body rebounds after such an overwhelming assault. My prayers go up for you and your wife.
Lynne
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Louis so happy they know what's going on and can now treat KD appropriately. Thank god!
Bab
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Louis, I'm so glad that they have identified what's going on. As Z said sepsis can be very serious but sounds like they are on the right course and she will spring back soon.
Steph, Sorry it turned out to be mets. But I do like your outlook as far as previous experience and slow moving cancer. I think too that you will do very well for a long time with a lot left in your arsenal.
Lynne, I don't know how you keep that cheerful optimistic demeanor with everything you and DH have been through. but I drink it up like magic elixir!
Yay shetland, holding the line and improving on the liver front is great! Hope those TM's are a very digits!
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