How are people with liver mets doing?
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I am in the midst of these same issues. Low platelets has kept chemo off table for a dangerously long time. I've even had an off label platelets shot called NPlate that is suppose to boost natural platelets. Didn't work. Then they talked platelet transfusion, but I didn't want to wait another 4-5 days to find out if I could then go ahead and restart chemo. I am, as is my MO, concerned about the lack of systemic treatment. Once the liver fails, it will not absorb the medications anymore and things can go bad quickly. SO, we opted to treat, even with the platelets low, and we have a platelets check and possible transfusion on the books for Monday id needed. It's "backward" from convention but make a total sense to me.
Good luck.
Sunset
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Sunset and Lisa Marie P, I was told platelets would tank on Gem/CArb but I haven't started yet, next Wednesday. I didn't know it had to do with the liver either.
I hope both of you will post on my new Gem/Carb thread. There we can all compare our experience and SE.💞
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I'm not on Gem/Carb. I'm on Navelbine and Capcetibine. Not even sure what made the platelets tank in th w first place because I hadn't been on anything but rads for over a month. Probably bone marrow infiltration.
Sunset
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Sunset,
You seem to know a heckuva lot more than I do about all of the ins and outs of MBC -- but I did find this article that could be helpful to you. It shows decreased platelets in some instances after Y 90?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC41142...
Bev
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Crazy thing about it, she just had PET and bones all clear. MO still says her liver is functioning at a good level. The platelet thing is bizarre to me right now. My guess is he is hoping the platelets will at least hold steady so he can continue to treat and know the cancer back a bit. Going to try an add some supplements in to hopefully help.
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LisaMarie no advice here just wanted to say I am hoping her platelets come up and all gets better .
Nicole
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Thank you Nicole.
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Thanks Grannax for setting up the new thread, I will definitely post there. My hemoglobin was at 8.2, lowest it’s been since I’ve been getting tested. Also my MO had 3 new tests done on Iron and all those results were also quite low, iron serum 27, standard range 45-160; TIBC 190, standard range 250-450. I have no idea what that means. It’s frustrating when results show up for something I’m totally not expecting and don’t understand. And of course it’s the weekend.
In the meantime I’m very tired. I haven’t been able to sleep the last few nights for more than an hour continuously then wake up for two hours. I’m going to go ahead and take an Ambien and see if I can sleep tonight.
Here’s to hoping all of us newbies on this combo do well.
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liwi- ask for an iron infusion. If you have no iron, your hemoglobin will be very low. My anemia got better after 3 iron transfusions. Maybe it will help you.
I can’t remrber, have they checked firbither reasons for the anemia? I had to go an upper and lower GI. Test and they actually found an ulcer and something called GAVE. I am having a procedure in Aug to cauterize leaky vessels in my gut in hopes it will help my anemia.
I’m sorry you are so fatigued. I hope it gets better soon.
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Thanks Liwi Yes I've been very anemic several times and iron infusion helped. I'm a little low right now. I'm wondering how my chem will affect that, probably make it lower.
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LisaMarieP, back in February 2018 I got a great CT scan report. No liver involvement at this time just bone. Bone spots “corticated" healing. I was so happy. Same visit I pointed out my platelets fell from 350,000 to 169,000. But because they just barely fell into normal range it didn't send up a flag on my bloodwork. It was bone marrow infiltration proven through a bone marrow biopsy. My cancer is very smart, lost the estrogen receptors so now AI weren't going to work. Had to start A/C chemo. It worked got the cancer out of the marrow but somehow moved into the liver. It's a very tough road because just when you think you've caught a break you get hit with something new. Hope you can find out quickly and get on the appropriate treatment to knock it out.
Jill
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griff. What you Said is so true. There are so many twists and turns that are possible but unknown to the patient. I'm starting Gem/Carb Wednesday. I've been fine but all of a sudden today I'm anxious about what might happen that I'm not expecting. So brave then boom.💞
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Hi Grannax2. I just wanted to give input to port.
I do not have a power port. I never asked why, but will. I think those ports are large and I have no body fat to cover it.. again, just a guess. I have a Bardport.
It worked great for my IV chemo, blood draws, and contrast for CT/bone scans. It does not work when needing contrast for abdominal MRI.
I found out you need a power port to withstand the large volume plus quick push for this contrast for MRIs..something about capturing the venous/arteriole blood flow in a quick period of time. So I have to have an IV in arm so there is no damage to existing port and MRI test is not compromised.
S
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Grifff, thanks for the info there, definitely could be something to ask about. For now at least she was treated with the Gem Carbo and 2 days out really no SEs other than sunburn like skin on face and arms but nothing terrible. Hopefully platelets hold come Friday for 2nd infusion. Her cancer also dropped hormone receptor at liver DX in August 2018 and very diffuse. Her options with the liver dysfunction are running slim. Next up would Ixempra, but not sure how that plays into low platelets and heard it's rough. Hopefully the scale swings back in our favour.
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Liwi, I have been struggling with my hemoglobin for 10+ months. It is finally improving. When mine was down to the 8s, I opted for a blood transfusion. It made a huge difference immediately. I held off on iron supplements until recently because they can help the cancer grow its blood vessels/blood supply and thrive, but do take a mild vegetable iron supplement right now. That seemed to help a bit but in the last month, my hemoglobin has jumped after I started ashwaganda, maitake and turkey tail supplements. It is nearly normal - in the 11s. I can't believe it. It was in the 9s for the majority of the last year, dipping down to 8s at times. I was very symptomatic and didn't function well in the 9s or 8s. I feel like a new person and my face is no longer pale white. I have so much more energy.
LisaMarie, I don't think bone marrow mets show up on scans very well if at all. They are tricky, hidden mets that can cause blood count issues, particularly platelets. I think most of us have them to some extent but rarely are bone marrow biopsies performed. I have never been diagnosed with bone marrow mets but suspect I have had them and wonder whether they impacted my past hemoglobin issues. I have not heard of liver mets impacting platelet levels but that may be true if one's liver is in really bad shape. If the liver is functioning at normal or not too far out of normal ranges, I don't think the liver would impact platelets. We only need 10% of our livers to function. You may want to look into ashwaganda, maitake and/or turkey tail supplements to boost your wife's platelets. I believe they can improve platelets and WBC in addition to hemoglobin.
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Thank you JFL . I too have been saying this very same thing after countless hours of research. Starting to feel like I can be a doctor, lol. The only thing I have seen on the liver is that portal hypertension would have to set it and the spleen would be enlarged trapping the blood. Also seems the liver would be in bad shape for this to happen which her MO has stated it's not, unless he's lying to keep her spirit up but seems far fetched. It is very hard to convince doctors when they believe in something to look elsewhere. Guess we'll have to wait until this Friday to see where her platelets are again before 2 ms infusion.
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Grannax2, about the new port. If you are having chemo the day after port installation, ask if they can insert the access needle while you are still under, and tape over it, so it will be ready for chemo the next day. When I did taxol I got my port in the morning and had my chemo infusion the same afternoon, and that’s how we did it. Currently I have a needle that was taped over three days ago, as I have been getting IV antibiotics for three days now. Also got meds for my liver biopsy through it during this time. I have a Bard power port that works for everything including scan contrasts. It is visible but not huge.
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Hi Shetland. I am so glad you brought up ports. I recently had MRI abdomen requiring IV contrast. The rad tech would not use my Bardport for this scan. Apparently, a power port would have been okay. Then she said maybe I should get a power port. I could only laugh at that ridiculous statement, like it was as easy as changing shoes.
She said MRI requires the contrast to be a fast push with large volume and could damage Bardport. It has to be done quickly to monitor venous/arteriole blood flow in liver. Apparently CT/bone scans , chemo are okay to use this port.
Hmmm.
How are you feeling post liver bx?
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Sandi, yeah, like you just go to the store and pick out a different port along with those cute heals. How are we to know about what to ask for when getting a port? Most of us we get them are new and scared and uneducated. We don’t even know there are different kinds. And also any options on placement or tips like draw where your bra strap hits. I’m just lucky my onc was thinking ahead and my cancer center uses these power ports. I mean, I didn’t even realize at the time that it would be permanent.
I don’t really have any pain from the biopsy that I can distinguish from the general discomfort from the stent infection, and that is improving
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Sandi, yeah, like you just go to the store and pick out a different port along with those cute heals. How are we to know about what to ask for when getting a port? Most of us when we get them are new and scared and uneducated. We don't even know there are different kinds. And also any options on placement or tips like draw where your bra strap hits. I'm just lucky my onc was thinking ahead and my cancer center uses these power ports. I mean, I didn't even realize at the time that it would be permanent. I'm going to check and see if BCO has a port page...
I don't really have any pain from the biopsy that I can distinguish from the general discomfort from the stent infection, and that is improving. I was super tired the day of the biopsy but ok now.
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I do have a new power port. Using it tomorrow. So sleepy now, I cannot keep my eyes open. 💞
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JFL thanks for sharing your experience when your hemoglobin was low. I’ve felt so tired the last few days. Just don’t feel like myself. They didn’t mention a transfusion wondering if I should ask for one if it continues to be low. My next G/Cinfusion is Thursday and they’ll do blood tests before we start.
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A Power Port is the kind that MD Anderson recommends. I've had mine since April 2018 and it has worked like a charm. Good luck with yours, Grannax, and with your treatment today!
Liwi, I was on Etoposide/Carb for a couple of months and it really knocked my RBC for a loop. I finally had a blood transfusion after I stopped that combo (it wasn't working) and I was amazed. I felt NORMAL for the first time in a long, long time. I had forgotten what that feels like! My hubby said, "Hey, you're not grey anymore!" Uh, thanks?
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I have my new power port. Somehow, on spite of lots of phone calls, the orders got mixed up. He thought we were just checking it. Wrong. When he heard it was ten years old and had already been checked, he changed the plan. Thank god.
Communication between medical offices is inadequate. But I'm ready for Chemo this morning.
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Hi all. Prodigal participant here. Just chiming in on the port issue: I have a Bard PowerPort. where I get care, only the infusion center and the Urgent Care/CDU use it. Everything else is a peripheral IV. Others are not trained to use ports. My veins are pretty good so I don't really want anyone who doesn't know what they are doing using it. Of course, the Urgent Care/CDU nurses kind of confessed that they use them so rarely they don't feel very well trained ...which does not inspire confidence.... Seems like we are all pretty much stuck with whatever they decide to put in there....
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Since I can only hold one thing in mind at a time... next up.... Just kind of wanted to see if people have thoughts: has anyone done the DS-8201A trail? I have had progression and we are slowly working toward what my next line of treatment may be. I did TPH and then H&P maintenance. Had progression after about 1.3 years. Tried to ablate liver lesion. Failed. They also got outta there without a biopsy. (Reason is not clear. They either couldn't get to it or forgot.) IR has mumbled about maybe Y90. TDM1 would typically be up next. We are still waiting on genomic analysis of an *old* biopsy specimen. My second opinion doc says do TDM1. I have another "second" opinion pending. My MO is basically saying "whatever you wanna do." I am grateful for the flexibility but feel rather rudderless.... The old biopsy specimen (which may or may not be relevant now) may provide guidance. Frankly, I am not expecting it to. So I think it's between TDM1 and DS-8201A. and I am feeling very indecisive. I know that tons of people have done TDM1, many with good results. On the one hand I fear that DS-8201A may be over-kill. On the other, I live in fear that it may be "the ticket" and I may "miss the boat" if I don't get on the trial. Anyone have thoughts or words of wisdom? These change in Tx points are the worst.
Note: For those not familiar, DS-8201A is a trial drug that has shown great promise. It is a drug conjugate. Like TDM1 it carries a chemo payload to the the HER2+ tumor. It has a much bigger chemo "payload" than TDM1 - about 8 times larger. What little i have heard is that 1) many patients who have not responded to other Tx are seeing remarkable results and 2) some trial participants seem to have more pronounced side effects, which is not really surprising.
Thanks for sharing thoughts/wisdom.
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Sort of talking to myself here but.... sharing an update... in a nutshell....
- My Oncologist does not recommend irradiating my liver at this point because it tends to make lab values abnormal which means you cannot be given some available drugs and cannot participate in many clinical trials.
- My genomic testing came back. There was only one mutation identified and it is not something they are able to specifically treat at this time. Results indicate that I am unlikely to respond to available immunotherapies, so those are not a good option for now.
- MO strongly recommended pursuing the two arm DS-8201A clinical trial. I have reached out to them to find out about getting the ball rolling. Would love to know if anyone else has done/is doing this trial.
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Hi All -
Have been skimming but not posting much. So drained.
Power port was put in last Wed and accessed on Thursday. Brutal. Yes wish I would have known about them accessing and leaving it in overnight...we live...we learn.
Abraxane/Carbo SEs seem mild so far. Feeling neuropathy finger toes and lips. Minor nausea which compazine is managing. Also have Zofran as needed.
Biggest excitement is I had a Farewell to Hair Party today. Pizza cake 60 attendees live Facebook video...it went much better than I expected. I choked up only once and got it right back under control.
Attendees were my Army family and I was their boss at one time. They care about me like family and it is mutual.
Such a hard day. Need sleep but not working. Round 2 chemo tomorrow. Here we go again.
Gumdoctor
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lumpie- TDM1 failed me. I am waiting to see if I can qualify for the trial you are talking about. Hoping it might slow/stop my brain Mets.
TDM1 has worked fir many I just wasn’t indvif them. Hence I’ve been on taxol/h/p since October.
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Gumdoctor, you DO have a tube of lidocaine & prilocaine cream to put on your port before access, don’t you? Put it on 45-60 minutes before access. Do not rub it in;rather, glob it on generously and cover with plastic wrap.
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