How are people with liver mets doing?
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Hi Salius,
always wonderful to hear from you. Once I get home I will be having some respite care as well as my own food and own space so I’m positive I can recoup faster. I have no shortage of people who want to help.
The hard part about treatmentis having a clot they can’t treat yet so there’s always the risk with that. My hemoglobin and bilirubin have been playing the fluctuating game but I’m positive I can get that turned around. I think the wait is really too see what’s going to be best. Chemo will kill the cancer faster , ibrance and fluvestrant will slow the division. So they prefer chemo , but I currently can’t have it. Anyway , I do think the ibrance is going to end up being the route for me to take. Just a feeling I have. I’m glad I now have an option atleast . I hope they don’t change their minds again. It’s been a rollercoaster.
My oncologist is currently trying to work out coverage with my insurance company to make sure we can get it that way and if not, then try to argue for compassionate use. A lot of steps but we will get there.
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BAP- great attitude! The waiting can be hard. FYI-Ibrance is similar to Verzenio and each has its own issues. I tolerated Verzenio quite well- no D for me. Just wanted you to weigh your options. Keep on keeping on!
Saulius- grrrr. It’s always something. 2mm seams like a softball when you are talking cancer. Glad you are staying on top of it. My last scan had 2mm increase on one tumor and it upset me but they still considered it stable disease in my situation. Hoping it’s nothing in the lymph node!
Dee
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update-
The good news- my CA15-3 went up then it went back down to normal.
The bad news is my CA 27.29 jumped up 7 points. And 1 point above normal. That marker tends to be more sensitive to tumor growth in the past
I know my numbers are not high compared to some people but mine have never gone over normal very much even in the fast growing times. I also know that tumor markers are not reliable. It’s all just messing with my head right now.
I turn sixty in a couple weeks and we have a cabin in the Smokies rented for 8 days. All 5 kids, 2 spouses and 2 granddaughters are coming!! It’s a bucket list trip. I just have to let go of cancer junk and enjoy!
Dee
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Dee,
Have a wonderful birthday and a wonderful trip. Put thoughts of cancer out of your head so you can enjoy being around your family. You've done so well on this treatment, too, so there's no reason to think that this is anything but a little glitch.
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Hi All,
Well, it’s on to IV chemotherapy for me. Nice while it lasted but no surprise really. “Met” (phone call - stupid Covid) with the temporary MO. He seemed good and discussed a number of options, ultimately landing on Vinorelbine. Anyone have any experience with it? I haven’t been able to find a specific thread but will keep looking. The one worry I have is my veins, wondering if a port is in my future.
I find the ins and outs of access here fascinating. I think he was initially leaning toward Eribulin, after determining that Doxorubicin was off the table due to prior exposure to Epirubicin in the adjuvant setting, but then decided we should do Vinorelbine first. Apparently here you can get approval to go from Vinorelbine to Eribulin but can’t go from Eribulin to Vinorelbine. Go figure…
I won’t start for a week or two as they have to figure out scheduling. In the meantime I can try to squeeze in enjoyment of a few more side effect free days.
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Sadie - I do not know anything about Vinorelbine. But depending on how many infusions and health of your veins, going without a port might be an option. I did chemo in 2016, 4 infusions without a port. I was concerned about a port becoming a source of infection even though the clinic was not. Also, could not stand the thought of one. I don't think I could do that today, hopefully I won't have to face that decision.
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Thanks BGRS. My veins are already starting to cry uncle from overuse. Almost five years of blood draws, CT IVs and pamidronate infusions have taken a toll with technicians having more and more trouble getting access. It also depends a bit on the as some are much more caustic than others. I had trouble with my veins in 2001, ultimately opting for a PICC line. I take it Vinorelbine is also hard on veins (MO asked up front if I had a port - never a good sign). We’ll see. If I have trouble I will push for a port. The tricky bit may be getting one with the clamp down on surgeries and elective procedures due to Covid. But I’ll cross that bridge when I get to it.
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ugh bilirubin slowly going up again. What’s up with that 🤦🏼♀️
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Sadiesservant,
So sorry to hear this. What happened to being off all treatment for a bit of time? Did the time pass that quickly?
I hope this drug treats you kindly. I have no experience with it at all. But I trust that you will ask all of the right questions and that you will make sure that you are set up with a port if that's what's needed.
Good luck. Thinking of you.
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Yes BevJen, time passed that quickly. I technically got four months of treatment but in reality it was about two months before things started to go pear shaped. The liver twinges started and got progressively worse. At the three month mark the one met was about the same size as it was before. Now, judging by the discomfort, I would say bigger.
But I’m good. I couldn’t really comprehend how no treatment was going to be sustainable. My cancer is slow but determined.
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sadiesservant- I remember someone talking about vinorelbine before - maybe grannax?
AlabamaDee- FWIW my MO warned me, when I reached NED, that my tumor markers would probably yo-yo a little bit, and they have. Have fun on you vacation in the Smokies. It sounds wonderful and the leaves should be turning, right?
BAP - ugg. Your body just needs to give you a break and calm down so you can work on fixing it. Hoping things settle down for you.
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Sadiesservant- I had port in 2008 for 6 mos of chemo. MO said do what you want about having one put in. Nurses said "you want one". I had much easier time than folks I watched in infusion room heating up their arms trying to get veins to pop up. Had it removed after chemo. I'd do it again if necessary. My only problem was it was very high and showed in any but crew or high neck shirt. Should have been put in lower where it wasn't visible.
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I’m finally home from the hospital. It’s bittersweet bc I still have ascites but I’m with my people. Hoping ibrance is still on the table when my dr and I speak next and will get me more time and comfort. Holding on to all those hopeful stories.
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dear BAP
Glad you are home and with loved ones. That’s the best medicine. Hoping you aren’t in pain and can be comfortable. Thinking of you and sending good thoughts. Be
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BAP - I keep thinking
There’s no place like home
There's no place like home
There's no place like homeI hope you recover well and those ascites go away.
Dee
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BAP,
I'm so glad that you are home with your people and I hope each day brings more comfort in every way.
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BAP. So glad to hear that you’re back home. Such good news. I’m happy for you and your family.
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thanks everyone!
If these ascites would go away I’d be a happy camper. I look about 36 weeks pregnant0 -
Ascites can reverse itself if the cancer is beaten back. I know that from my wife's experience. She was generating a gallon of fluid in less than a week at her worst.
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thanks husband. Hopefully I can start something soon. I’m pretty sure I’m producing the same as your wife. I usually get 4/5 litres removed every tap. There’s always more than that but I have low blood pressure they’re watching
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My wife had a drain line installed so we could do it at home. Taking our time, we could get more out than them using a needle. It seemed with the needle, they had to pick a spot, and they said they couldn't go in twice during the same draining.
They also put my wife in an injectable blood thinner, and two types of diuretics, which somehow compensate for each other's side effects.
If it didn't reverse, the liver specialized recommended doing a shunt through her liver, where they bore a hole though the liver so that the vein (yes it is a vein that runs from the small intestine) that runs into the liver could simply pass through her liver unobstructed and remove the hepatic hypertension.
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Dear BAP, please hold on! I just want you to go on some treatment... man, I completely agree with Husband11 - to revert ascites, you need to beat cancer back. We also went for the treatment when liver was in failure and put signature under words ,,on our own risk". We have come a long way after that...
Saulius
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Husband- I wanted the permanent drain but they won’t consider it until there’s no treatment options. They’re too terrified that it’ll get infected and then be too hard to remove. So I get the taps which just don’t last as long. I should be on a thinner for my clot but there’s things that have been going on preventing it. They tried diuretics once. And I think they’re concerned they’ll lower pressure more but they have mentioned it a few times. So I will as weds. I tried asking about the shunt “your body is too weak” which is crazy because if I didn’t have the belly I’d feel fine.
Salius - trust me. I’m fighting for something one way or the other. Whether it be chemo or ibrance with AI/fluvestrant. Something ! I’m not just gonna let them say no. I’ll try . We know cisplatin and gemcitabine oished it back a little in ONE treatment. But then I actually did almost die. The dr said “what you did is the most remarkable thing I’ve ever seen in my whole career and I wanted you to know that” They had never seen anyone with bleeding like mine , blood pressure that low , be conscious, alert, and with faculties. If anyone can do this , it’s me. And the fact that you and your wife took the risk and it’s paying off in spades , is inspiring and gives me that extra push. Here’s to hoping blood work is good tmr and my MO has some good news weds.
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BAP, huge huge hugs your way, you are a super-girl, a fighter. Your posts are remarkably inspiring and up-lifting. You go and do what you have to do and leave all of them breathless one more time! More hugs... and more hugs!
Saulius
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BAP, thinking of you. glad you're home & hoping for more good news soon
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I've had a smart port since I started my first IV infusions more than two years ago. I LOVE my port. Haven't had any problems with it and I hardly notice it's there even while doing crazy yoga poses and modern dance classes. Around here I rarely see anyone without a port. Today there was a guy opposite me in the Infusion center who didn't have a port. He had to have 7 IVs during his last treatment because his veins kept drying out. I only have one "good" vein and it has a lot of scar tissue so I am very protective of it. When I had surgery they wouldn't use the port so I have to access my veins some times but the less the better.
AlabamaDee, So excited for you! Being with family is the best!
Hugs, Susan
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SusaninSF- Where in the area are you getting your treatment? I'm in Oakland, treatment at Kaiser- Initial diagnosis in 1998. I'm curious as to how you discovered mets in your eyes? A regular scan? I currently have very high tumor markers (over 1000) and nothing is showing up on scans. I've had eye issues for over a year now and continually wonder if my mets have gone there. I have lobular mets so they are not always easily seen. I also have never heard of a "smart port"- I had a port 22 years ago and it's nice to know things have improved. I may be heading for a port soon so it's good to know about this device, but it sounds expensive and I don't know if Kaiser would cover this model. So glad it makes life a bit easier. Take Care, Nina
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So, today skin-surgeon took biopsy from that little wound in the mastectomy scar. He did not want to speculate. Results next week. Super-anxious. Praying they are negative. So far wound has not worsened, I'd say even improved, is 5x5 mm (was ~15x10 mm)... but now after some surgeon work with scissors for biopsy, we'll have to work to heal it again. Ehh... Crappy crappy disease... Saulius
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Saulius
My heart goes out to you and your wife. Hoping it is nothing. Hugs and peace while you wait
Dee
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NinaCA- I just went to my yearly eye check up with my optometrist. I mentioned to her how I read (on here) about mets to eye. She said she has diagnosed a couple of people in her career with eye mets. She found it on a routine exam. No symptoms from the patients. She then referred them to specialists. She said 1 was a melanoma primary and the other person never found the primary, but it also went to their liver and bones. So I would say a good exam by your eye doctor can start the process and if anything found then would go to a specialist. She did dilate my eyes so you need a good exam with dilation.
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