How are people with liver mets doing?
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Yes animal crackers I saw that on web md as well not that I trust it . I think I'll take the medication /supplement train apparently it can also cause this and at my next appointment I will ask about my gallbladder. Thans
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Wendy - the flu like symptoms have been a response to meds or possibly a triggered immune response. i was burping a lot at some point... it was totally weird ... but not at the time of growth of liver mets. i think you have a long run ahead of you but i am glad you are watching how you feel. perhaps the flu like symptoms are ... the flu? it's funny how we can overlook the obvious. maybe you need hot tea and a brisk walk to move it through your system. (I am not much for bed rest, as you know.)
Take care.
Z
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Thank you Grannax. I start my last week of treatment here monday. Typhoon Lan hits Tokyo Bay at 6am on Monday, my appointment starts at noon. It is currently off the coast of southern Japan and a Class 4 storm.
I am told Monday will be a normal day in Tokyo as long as you can stay in the subway and buildings. The subway exits directly into the clinic building so that will be fine but my hotel is a 5 minute walk from the subway. It will be a long 5 minutes getting to the subway Monday morning for sure.
I am passed the chemo phase which was hard even though it was very low dose. I still get hyperthermia with most treatments and that is not a tea party but is easier for sure than chemo and hyperthermia. I am doing a lot better knowing that my CEA has leveled off. It was a little hard to feel that I was off treatment with demon liver mets from hell growing like fiends uncontrolled ... I think we've all been through that mental exercise.
>Z<
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Zar unbelievable that on top of it all you'll have a story to tell about typhoons. Could you imagine your DD on the next show and tell? Yeeh for good news with the CEA, nice that you could at least see some improvement. That has been really hard work.
I think I am starting to understand what you meant re: rads, I'll ask. She is in such dire need for rads all over, including the orbital and other head areas, but they won't start till Y90 is done, IR said Y90 is too strong to have it in the same day as regular rads, and RO does not want a break, i'll wait till after the 1st angio and when we have a date for Y90 i'll try to bargain with RO.
Wendy wishing you to feel stronger fast. I had something like this come overnight, finally went to doc he said it could be the beginning of an Ulcer, he put me on Protonix and Zofran, because i was so nauseous, it took a few days but it got better, my burping kinda stayed, strangely i never had this, i am more careful in what i eat.
LindaE so sorry this stupid tx are not sticking. These are strong options, it seems that Onco wants to be aggressive, might not be a bad thing. How are you feeling? Where is the progression, in the liver?
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Nib, I see MO on Tuesday, I'm planning on asking him then. I haven't seen him since I was released from the hospital. We should settle on something then. I'll definitely let you know what we decide and what his opinion is. Thanks for asking. Keeping everyone in my thoughts and prayers.
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Mom- I can not imagine having rads anytime soon after completing the Y90. I was in no shape to have been able to do that. When will the mapping for the Y90 be done? I hope it will be soon so she can get this step behind her.
I do remember the IR saying not to be in contact with small children but my kids are teenagers so I did not think too much about it.
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Wendy - no such symptoms for me.
Momall - Quite a week it will be for you and Dani. I'll be holding your hand in spirit. My progression is in liver and peritoneal mets.
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LindaE giant hugs.
BabyRuth thx for the heads up, i cannot imagine a delay on the other rads. It's real urgent for danger reasons and things really bothering her. Oh my gosh!!! How long did it take you to get back to yourself.
Re: faslodex - she had that years ago. Aside from having it at room temperature, any other tips, the one she got last week, she had much pain on one leg for a while. Could be the way the nurse gave it to her.
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Zarovka, hang in tight with the typhoon. I sympathize, begin in a hurricane zone. I hope you can make it to your Monday appointments.
Mom, this is all too much for one person to bear with what Dani is up against. I do find myself in amazement at how much it seems her doctors are fighting for her (the IR and RO, at least). It sounds like she is finally in the hands of some doctors that want to fight for her. So many times it seems that the doctors are ready to give up long before we are. I am happy to hear about these two and hope the fight continues with all of her doctors.
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Mom and Dani - Thinking of you every day. Faslodex warmed in the armpit, slowly injected in the right place, at least one min or up to two min for each side. Stand on opposite leg for the injection to go in more relaxed hip. Reclining is a new way to go, some say it helps. Afterward a warm pad, massaging. And before an Ibuprofen or Tylenol can help. There are threads. Here is a link.... https://community.breastcancer.org/forum/8/topics/... Oh, imo the cold pack on hips before is not a good idea as I think it stops the injection from dispersing properly, and I used to use the cold packs as was recommended by others.
Had a liver biopsy done with only the lidocaine injection to numb locally. No, nothing else due to drug sensitivities. What do you all think? Should they have insisted to put me to sleep?
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Mom-it took me quite a while. About 6 weeks to be exact. Not everyone recovers at the same pace. It may be much easier for her. My IR also went through an artery in my left wrist instead of my groin.
I have not had any issues with faslodex. I get the shots one at a time and make sure to take the weight off the side receiving the shot. I try to walk around a little before getting in the car as that seems to help with the soreness. I also use a low temp heating pad to ease any pain. I will be thinking of you and Dani this week.
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Bluebird, I had my liver biopsy with just lidocaine. I didn't have any pain during the procedure or afterwards. Was you experience more difficult?
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Bluebird and Snowfall, I was pushing for no sedation/twilight meds and they told me they couldn't do the liver biopsy without it. So annoying! Would have preferred lidocaine only.
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I had expected twilight drugs, but the appointment was scheduled at the last minute and I didn't have time to fast. The dr said local anesthesia was plenty, and as far as I was concerned, it turned out he was right. I had a little soreness for a day or so in the muscle that he had to go through, but nothing I'd call pain.
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It was a nightmare and the worst day of my life. I don't know what went wrong if lidocaine only can work for some. Perhaps location? Perhaps it was rushed before the lidocaine worked fully? I just don't know. But i will say no further comment due to not wanting to freak people out prior to their biopsies. I will say there was no clue from these boards of what I would go through, none. So something had to be done wrong.
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The difficulty of a liver biopsy depends on the location and I would expect that influences the sedation they choose. Mine was a piece of cake. Could have done it with no sedation, which is saying a lot since I incline to panic attacks in medical situations. My met is just below the ribs, near the surface. Super easy to get to.
>Z<
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Plan A was conscious sedation. Plan B was intubation because my sats would not stay up. I have mets in my lung and was was having some trouble breathing when it was done last December. It seemed to take forever to wake up, sore throat, lots of coughing and a very long day. I don't think it was hard to get to, my liver mets were big, too.
I can't believe it's been almost a year since my DX of MBC.
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Approximately how many weeks did it take for you to get your F1 results back? I am anxious to get mine back so I can start to research trials and treatments. Trying to understand why, if I am ER/PR+, hormonals failed and IV chemo worked. Just started Xeloda and hope this works for a long time but the day will come...need to be ready when that happens.
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So sorry to hear that, Bluebird. Just goes to show that while we're all dealing with the same disease, our bodies are different and there is no single certain solution to any issue.
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My Foundation 1 results took about 4 weeks to get back
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F1 takes 14 days from the time they receive the sample. Period. The pathology department can take a few days to send it. You can find out what date that was by calling F1. If you call F1, they will send you the results directly as soon as it is released. This will be quite a bit sooner than your doctor gets and long before your doctor's office gets around to sending it to you.
F1 has a trial navigation service that I recommend signing up for as another opinion to support and compare with your own research and your doctor's opinion. That said, I signed up online last week and have not heard back ... probably need to call them. Nothing happens unless you make it happen, but I understand this is a useful service.
Foundation One can be reached in the following ways:
• Online form: http://info.foundationmedicine.com/foundationaccesstrialnavigator
• Email: trialnavigator@foundationmedicine.com
• Foundation Medicine's customer services department: 888.988.3639
>Z<
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Z, you really are remarkable! I am praying that the treatment you are receiving does what it is designed to do and you get the response you deserve.
I will call F1 and ask that they send me a copy of the results and will sign up for their clinical trial search.
When I was in the MO office a couple of weeks ago I ask about clinical trials...the answer was we don't have any currently for you but they are coming. That was the same answer I received 8 months ago. This time I quickly stated I would be looking for one else where. I don't have the luxury of time. Also pointed out that most trials are targeted therapies. That is how I was able to get the F1 testing. I had asked for this also about 8 months ago but was told we would do it later. Well later came with progression due to a treatment that did not work.
Hmmmm, I wonder if they have trials in Hawaii? I could do sand and surf.
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Has anyone heard from mom about Dani's procedure yesterday?
Z. How was it for you getting to your appt yesterday in the Typhoon?
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It sounds like all of our liver mets are getting all sorts of treatment. I'm still taking Xeloda and my TMs have come down to normal. They came down to 37 in July, now back up to the forties which is still in the normal range. I'm waiting for my MO tell me I need scans when I get home from Africa. I guess that will be normal. I'm thinking of all of you. I'm behind on the threads, but think of everyone daily. I've been out west taking photos and now leave this week for Africa. Someone had asked for a photo fix. I have a few from Antelope Canyon. Some of the hardest photography I have ever done. I'm sending you all a HEART photo from the Canyon and a few others to remind us of the beauty we have all around us. Love to all. I'll catch up one of these day!!
Hugs to All!!! Anita
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A few more that will make you smile. Antelope Canyon.
Anita
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One more. Enjoy,
Anita
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WOW! Just WOW!
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The Universe is of art and these photos just remind us. They are absolutely beautiful Anite, good work on capturing them. I really like the "tunnel" best.
NO1 - you are right, when someone says to us later then we have to say no, now. There is no later for me, it has to be done now so there will be a later. I am still learning the hard way.
I am still reeling that I cannot be on Ibrance while on Xeloda. My liver hurts and I feel another lesion gnawing in the front left. All these months and no tx to stop them. But of course we thought the Xeloda was doing it since the TMs dropped to normal. Labs are a lie for my body. I wanted to trust them but I cannot and I tell the oncs all the time not to get too happy about labs that are dropping or look normal. Looks like it is scans for me from here out. But I wanted hahahaha the last to be the last forever.
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Anita, your photos send chills through me. What a gift.
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Anita it was me who asked for the photo fix. I almost made it out to see Antelope Canyon this fall but wasn't able to so thank you for the pictures. Beautiful.
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