How are people with liver mets doing?
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Z- it’s worth asking about a port. I was not excited about getting s new one installed but in the end it just made sense. Ports can be used for injecting contrast for things like CT/MRIs. And it will save your veins especially if you can only use one arm like me.
As I just had mine put in on Tuesday I can say it is s relatively simple procedure ( in terms of everything you’ve probably been through). I was quite sore for a few days. Now it is fine except my skin is still getting over the adhesive reaction I get from bandages. I look forward to my next blood draw and scan as I know they won’t be digging around in my arm to find a good vein.
I’d would recommend you consider it if it’s an option. And I’m happy to send photos if you’d like.
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rpoole - Did it interfere with stretching or working out in that location? Were you able to raise your arms or lift weights, that kind of thing?
>Z<
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Babs, I’m thinking of you. Hoping no bad news. I’m hoping you have a great time in Paris. Hopefully if you do have ascities they can drain the fluid for you. Hugs to you and everyone else.
Anita
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Z, regarding your port questions. I have had my port for one year. It is used for my monthly blood draws and CT contrast. The recommendation is not to access the port frequently due to increased infection risks. I lift weights regularly, but I do on occasion, feel a tug in the port area with some local burning. So I listen to my body and back off. There is no plan in my future to remove port.
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Guys thanks so much for chiming in. Babs i did not want to tell you on our pm because you are so happy there, but yes, if could ask the LI people.
JFL thanks, yes honestly it's exactly 2 months from the first time, and Dani still looks at me like how much odder can I get??? Cancer at such young age, no HX, constant progression and now this horrendous thing that is so painful when it block the urine passage and having to beg ER and doctors to take it seriously, she tells them, can you imagine when you just have to hold it in a bit how it hurts blah blah...they are going by what PUBMED says...
Yes, i am reaching out to tonz of people, first as of in 10mins Eastern time, I am reaching out to differnt docs, but it would be great to know who is the one Doc that dealt with this 1% of ppl.
The MO was emailing us back and forth and he called, he was away, we so did not want to bother him, but the URO was awol and his team was not coming, they kept saying they have an emergency Dani was I am an emergency, it was insane. We had to fight for e/t. Then friday nt, they said we'll keep irrigating (which is their way to clear the blood/urine from the bladder) for 48 hrs, we were like what?? And I know they wanted to drag it along until the URO will show up Monday morning, we had such a fit, and through Onco and then after the resident came late at night he saw how bad it was, because they could not even get things out by flushing, he said you'll go tom morning for cystoscopy and then fulgurization, then they kept apologizing, and I was like i don't accept it. It was inhumane what they did.
I am getting an email from the Chief of Urology and i want to post a formal complaint about this URO. I hope to get tis done this morning.
Zar Dani had a port, but then she took it off she just could not deal with the reminder of it in her body all the time, now she watches her vein all the time, and she fights to get decent phlebotomist, and thanks the ones that are careful.
bluebird get to know you are more in peace with the team. let's hope for good news.
Everyone big warm hugs, i gotta go do my homework.
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Mom. It just seems absurd that the hospital has no other answer for her. What they are doing is not a solution. There's got to be a reason it keeps happening. I'm praying a really smart doc will appear to DX and fix the problem that is so horribly painful. I hope your research is successful.
Prayers for all of you searching for different TX or TX without as many SE. Z. My port was put in seven years ago. It does not bother me at all.
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Just popping in with a comment- apparently in one trial, the MOs observed that the MBC patients who responded the best to checkpoint inhibitors were those who originally were ER-positive but then the cancer mutated to triple-negative. Their three most durable long-lasting responses were these particular patients- they responded better than patients who were always triple negative. Isn't that weird?! no idea what the mechanism could be...
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My heart hurts for all of us going through this experience. But thank you for the feedback on my question, I had my appointment today, and basically the doctor said that I am an exceptional responder (not quite sure why as my scan is not completely clear), and that if things remain the same by March next year then we can blast this one met with localized radiation. But you know the drill, one day at a time as one tries to navigate this 'new normal'... just know that someone on the Southern tip of Africa is holding you guys before Almighty God often.
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Z- For what it's worth, I have had weekly A-train (3 weeks on, one week off) plus the occasional Vitamin C IV since August - no port. Despite all the planned blood and other draws, you may not need one if you select Abemaciclib alone or paired with faslodex. My UCLA onc thinks Abe paired with faslodex is a great killer, but not putting me on it yet, as they want to see results from more trials. Major Abe SE is diarrhea as you know. If I were in your shoes, I'd still look at Abe and maybe fas (as it's not an AI which you are resistant too) and maybe Kaytruda. Please don't go for an IV chemo yet, your little taste of Gemzar should keep that one at bay. I think Vitamin C is a great killer (my onc supports the IV) and my new friend NAC. Let's kill chemo cells in the stroma phase. Those are my kind thoughts for you. I finish A-train in January. Going to work on Tuesday.
Artist - where is your X? Unacceptable delay, please write your provider and cc their legal team. Momatt - no words for Dani's needless suffering. Hoping someone can advise. Babs - tres bien on making it to Paris and keeping your health on the down low. What a mom! Cure-ious hoping I graduate to tamox or X at the end of Jan when next scans are done. Preferably tamox alone or even paired with fas. X can wait since I am fearful of HSF. How are you doing otherwise?
We had a little rain shower here today, very welcomed by my thirsty roses.
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My oncologist is pushing for the Caris Molecular Intellegence Test on my cancer as we have tried so many treatments with all of them failing miserably.
We have to raise a lot of money for this and am wondering if it will be worth it.
Does anyone have thoughts on this test
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Z I agree with rpoole get the port! I’ve had mine for four years and it’s a beauty. I use it for scans and blood draws. Like she said make sure it’s a pier port so they can do contrast..
Artist yes I was on Abraxane for close to a year but now the cancer is on the liver 6 cm tumor so doc switched me to Gemzar once a week for three weeks one week off. Abraxane was only every two weeks so I am feeling the effect but I agree with my oncologist I need something strong for now.
Reading and praying for each one.
Aurora
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Z, I was able to stretch and use my arm weights, but I did so cautiously. I honestly forgot it was there half the time. I think the arm ports are great, because you don't have to look at a chest port everyday and be reminded of what your going through. Just my thoughts!
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Z, my port was not optional. My veins gave out four years ago. After a few years of continual needle sticks in my good arm, I starting getting phlebitis with every stick-- very troubling to me. So my Power Port is used for everything. I love the thing so much and I forget it's in there. It is sometimes accessed three times in one week and I have never had any problems with infection.
As for using it for complementary pursuits outside the world of nurses who are trained to access ports... that would give me pause, personally. I almost never let anyone but my oncology nurses touch the thing. I've had ER nurses try to bluff me that they knew how to access a port, and then prove that they did not. I've had ER nurses refuse to use it and insist on sticking a vein against my protests, only to have zero blood return (serves 'em right, LOL!) and another bout of phlebitis. I won't do that to myself again if I can avoid it, so my workaround-- and it works just fine!-- is whenever I have a surgery or a scan scheduled for early in the morning, I go see my oncology nurse at clinic closing time the evening before to get it accessed. She knows how to bandage it up for overnight and that is not uncomfortable, in the grand scheme of things. It's worth it to me.
So if you know now where you will be going for anything that would use a port, I'd say call now or show up and ask questions. How often do they access ports, do they flush them with Heparin, is there always a nurse present who can do it... and get the full names of the nurses who are known to be adept.
But definitely get one!
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Z, also not everyone can access a port you need a trained person and the right supplies and flush afterwards. Maybe you have more RN’s (or other train central line person) in places that will access them. Where I am the lab will not use it or the CT department. I had mine removed as it was ugly and you could see it in my neck. I just get an IV every three weeks. Maybe they can use a saline lock at times...
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Z, My port does not generally bother me and I like not getting IV's for sure. A few things can be annoying such as draping a small purse across my chest, the strap can rub. Like bstein I find it rather unattractive, it looks like a big cyst on my upper chest, and many of my shirts now are too low to wear without it showing. I have resorted to wearing a camisole under those. Wish I had inquired about under the arm like Robin.
Jaywalker, Exceptional responder is great! Thank you for the extra prayers....
lalady, Today I called my providers office to ask for both my Dr's voicemail and Email, they would give me neither. They have a nurse supervisor who screens everything and "passes it on". Again today I got basically the same response. "We are waiting on the Specialty Pharmacy. It is pending".
aurora, good luck with the gemzar. I hope it's not too difficult.
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artist - I am really sorry you have this nonsense to deal with. Since specialty pharmacies are usually required by insurance have you thought about going to your insurance company and working from that direction? If there is a prescription at the pharmacy it should be filled unless there is an insurance issue.
Just a thought.
Mary
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Z, if you don't end up getting a port, you can look into other entry points. I take Abraxane without a port. They stick a vein in the outside of my forearm. I didn't think about using that location until my MO suggested using it when he noted how prominent the vein was during one of my appointments. This area is great as it doesn't get sore, irritated or bruised and doesn't have issues taking a blood draw or chemo.
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2 minutes ago - edited a few seconds ago by Emily-Louise
Things are not great, my liver has not bounced back back fro Sirs and we are facing liver failure, weather it be from the procedure or further cancer.
Ihave a CT scan tomorrow to determine weather we begin chemo and an other drug, however each way is not promising.
Or I bite the bullet and live a quality of life and live my short days out with my children and devastated husband
Any good someone can give me from here would be appreciated.
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Hello Everyone, I had a question regarding liver mets. I just had blood work on Friday. I’ve been on Xeloda since April and it dropped TMs and liver enzymes to normal. Friday things seem to be changing. My TMs are rising and Alk Phos is rising. Has anyone had this on Xeloda? I am scheduled for CT to see if the liver is progressing but it seems like Xeloda should work for more than 6 months. I’m just having a melt down. Not sure what the next step would be. Any suggestions?
Hugs to everyone,
Anita
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Emily-Louise,
I am sorry to see that your liver function tests are declining. Are you still on the AA combo? I know that combo can raise your liver enzymes. I was on that combo and it made my tumor markers triple. Whatever you oncologist decides, I will be praying that your liver bounces back.
Did you have both lobes done? If so, were they done at 2 different times?
Robin
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Emily-Louise, I responded to your post on the Y90, etc. thread as well. I am saddened to hear this and praying your liver bounces back.
Anita, I had tumor flare and increased tumor markers and liver enzymes the first 3 months on Xeloda but nothing after that. When I am sick (flu or similar), my liver enzymes and alkaline phosphatase can spike. However, other than that, my alkaline phosphatase tends to track my progression/regression. I hope your bloodwork is a fluke.
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Anita: my liver markers have risen a bit on Xeloda. Also, I had one test where they rose more strongly. In particular, my bilirubin increased (to 1.5 then 2.1) and this indicator hasn't risen like this before. My MO said she would be more concerned if it got above 3. I did do one blood test alongside another from my primary care doc that required it to be a 'fasting test' and that raised all the liver markers. These fell when my next test was not fasting. However, my bilirubin continued to raise to 2.1. So this time I did my tests at the end of my week off from Xeloda and the liver markers were all down, including bilirubin. So I think X has been affecting my liver tests. I have mets only in my liver, and my last CT scan showed great shrinkage (50% and 30% on my biggest spots) also I definitely get more side pain when I'm on X than my week off. It's always there but ranges from mild to annoying. I am feeling the activity on the cancer cells in my liver is what's causing the indicators to show stress. Hopefully this helps.
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I did a very low dose of Xeloda along with a very low dose of gemzar ... two 600mg infusions ... and my liver markers went through the roof. This was concurrent with significant reduction in liver mets but probably due to a different treatment.
Biomarkers are interesting, but what they mean is very specific to the situation and individual. Crazy making in that respect. Hang in there.
>Z<
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Z, ports are not always necessary. There are several schools of thought on who exactly should have one including the health of the person receiving the port as well as the agent being injected into the veins. Ports should never be accessed by anyone other than someone who is licensed to do so. On a personal note, I have not had to have a port placed. I have had several IV chemo's and multiple scans and needle sticks but to date I have not had to have one inserted. My sister on the other hand did have one placed due to the types of chemo she has received.
Mom, I am praying for you and Dani. My only suggestion would be to see if there are any papers that may have been published on NCBI web site regarding this process and then look at the name of the person(s) who published. Once you have a name you may be able to start doing your research on that person. Here is an article that is older but these docs are state side https://www.ncbi.nlm.nih.gov/pubmed/10430259. There are newer articles but some are from other countries. Not sure if this will help but it is a thought.
Hugs and blessings to all.
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I got to spend yesterday in the ER for a nose bleed that would not stop. There was too much bleeding for the them to cauterize my nose so he put some cocaine in the offending nostril and then inserted a nasal balloon pack. My platelets were fine but my protime was high so they gave me a shot of vitamin K to help the protime recover. I don't know if the protime was high ecause my liver is having problems (my liver enzymes have been fine) or if Taxol is causing it. I see my MO tomorrow in conjunction with more chemo. Your thoughts would be appreciated.
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Mom / Dani - I am wondering if your oncologist would be willing and able to place a protocol order for you in the ER so next time there is no question on what needs to be done and NOW, not later. My theory is the clots are caused by the cancer treatments, whetehr oncolofist wants to own that or not. Not that they are his fault, but that is is an se and thus in his territory.
Sylvia - in our thoughts. This would be horrifying, I feel for you.
I have had a sobering time lately. IF the new breast cancer specialist at Goshen CC is correct then I will have been off any effective cancer treatment for 19 months. Since Spring 2016. Except for the April/May radiation in two areas which is all that worked to save my life. I just don't know. But I do know the supraclavical has been swelling again in last few months. I am off Xeloda for 6 days now and waiting for new chemo - the AA combo to be approved or arrive.
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Ladies - finished round #12 of Abraxane today. TMs are falling, but so are WBC. Glad I have next week off from big chair. Veins still holding up, as is hair via cold caps. Still working and using uber. Bluebird - I struggled on Afinitor, please be careful. You will need magic mouthwash to avoid mouth sores, etc. Please take a look at the Afinitor thread. For me, A-train is working and I'm graduating to a pill in February after next PET. Going for tamox or xeloda depending on scan. Sylvia - sorry about your nose bleed - that sounds scary. Z - have you decided on your next med? So much we need to do for ourselves.
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Congrats on finishing round #12. I am getting a port tomorrow but for the moment I will use it for Alpha Lipoic Acid infusions. I haven't gotten the results of my biopsy back from Caris. Takes 2 weeks. From there we can make decisions on the path forward.
My onc says that ports under the arm move and she feels the chest is the better location but I don't put too much stock in that. She feels she has to have an opinion on things I am not sure she knows much about. There is a pattern. Consulting with Dr. Google tonight. Decision at 8:30 am.
>Z<
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Bluebird, I too had a hard time on Affinitor. Got some nasty little itchy bumps all over my body (mostly arms and trunk) that took a month to clear up. I quit Affinitor after 2 weeks.....
Scilly, good info on the Xeloda. I just started and am worried about liver markers. I had trouble with Ibrance in that regard. Just don't want any problems that make me have to quit another med....
Thinking of you EmilyLouise
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Z - I know you are active, so thought I recommend that if you decide to have port placed in chest, let the surgeon know so they can plan for where your sports bra would rub. I have a chest port and am also very active - running and swimming - and my port does not bother me one bit - but sometimes my skin over it get some rubbed raw from a sports bra.
Good luck with procedure.
And you, EmilyLouise, and your kids and husband are on my mind tonight.
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