How are people with liver mets doing?
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Dear Moth, I suddenly thought your MO could also consider Enhertu... similar payload with Trodelvy but no one knows how much of TROP2 expression you had, so this also might be considered. TDXd had ~30% ORR in Her2-(0) population in Destiny-Breast-04.
Saulius
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Moth, you are in my prayers.
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moth, sending you warm hugs. Know that I’m walking with you…you are not alone. I don’t post very often but I’m here. Fingers crossed that the new chemo packs a wallop to the liver Mets. Ask your MO to add the BCCA Palliative care team to your care, they have excellent staff who are very accessible when pain etc get out of control. Living in limbo land waiting for results, information, to feel better…is mentally exhausting. I hope you are able to get outside in the warm weather and just be. An
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moth: I held off replying because I am so at a loss for words. Everything sounds trite when it cannot be combined with tight hug. I am so glad I met you back in the Fall of 2019 with other ladies from BCO. I am so sad that card deck of life has dealt you such a crappy hand. You have been a wealth of support and information for all us fellow travellers. Or - using the card deck analogy- is that Fellow Gamblers? You need a Royal Flush. (I don't play cards, I just watch a lot of Maverick reruns) I am angry for you that a bright future in nursing has been snatched away. I am sad and angry that you are in pain and scared. Swear words don't cover it and my vocabulary is bereft of the appropriate ones.
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elderberry, so well said. We are here for you, Moth, however we can.
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moth , I echo elderberrys thoughts and think of you every day.
I had palliative care when I was in constant pain 18 months ago while going through progression and change of meds. I was prescribed opiods. I said I was scared of becoming dependent. I got the reply ''Let's get rid of the pain now and worry about that in a few years time.'' . I was given slow release Zomorph capsules. Initially, I felt a bit dozy for a week. I went from being unable to function to living a more 'normal' life. I don't need them at the moment, but I would not hesitate to take opiods again if I need pain relief in the future.
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Oh Moth,
If it's any consolation, my bilirubin is high and they still don't know what to make of it. I'm slightly Jaundiced and last check it was at 64. I can tell it's still up bc of my pee and I think my sclera is a little yellow . It's hard to tell. I'm on palliative care but not on hospice just yet. I have been the mystery to my team for the longest time cause nothing ever makes sense with me. It's quite annoying ans scary. Hoping they let you do chemo and that it helps with your numbers.
I know it's hard and down right defeating, but try to keep your head up
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Moth,
So sorry to hear about your struggles. What chemo are you going on next? Glad you talked your MO into continuing treatment. We need to stay alive long enough to get the next promising treatment.
We are here for you! Try to relax in the sun. The sun should help your bilirubin levels. Totally different situation but when my daughter was born jaundiced they told us to take all her clothes off and have her lie in the sun coming through a window. I would give her a full body massage while she sunbathed.
Love and light, Susan
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I don't post often but I read every single post. Moth I am glad that you pushed for continuation of therapy and I am eagerly awaiting news from you. I'll keep you in my thoughts!
Sending hugs to everyone
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Moth
I haven’t been on this thread in a long time, but just wanted you to know that I am so, so sorry that you have experienced progression and are in pain. I pray that God will guide your doctors to the best course of treatment for you, that it will be manageable and that it kicks cancers butt. I hope that you can draw some strength from all of us to get you thru this.
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normally I take weekends off but now I'm just a tired in bed person. We gave one dose of cisplatin on Thursday, which has some articles about helping liver failure. I might have raised blood ammonia causing some brain weirdness. Hope it's going down . If all settles I'll continue the chemo, either alone or eventually adding gemcitabine. Otherwise it's hospice if that liver doesn't restore. That's the numbers I posted on my ig @itisjustastage
Thx everyone, I love to hear your supportive & good thoughts here or by PM or on ig etc. Someone is sending me a postal mail thing too - what a fun thing will come
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Hey Moth.
Moth, you were one of the initial responders to my very first post in this community forum when I was diagnosed over a year ago. It was you and a few others that convinced me to be strong and proceed with Chemotherapy when I had resolved, I’d rather take my chances than risk “ruining” my health with toxic chemicals.I’m so, so, so fortunate to have come across such caring, patient, strong and effective communicators who were able to show me the folly of my ways. I’ll forever be grateful to you for taking the time to ease the panic I was feeling and remind me to be fierce in the face of fear.
I’m so sorry to see you’re unwell, very, very sorry indeed but I am glad you posted today despite your weekend off policy so that I can wish you well and tell you how important your words were to me. You are definitely a special woman and I will be thinking of you always.
Love, Nina.💓.0 -
moth, I'm watching this thread, anxiously looking for any update from you. I'm also following you on IG and sending you love, prayers, pocket duty, and anything that will remotely help. No need to reply, just know that we are thinking of you and care deeply!
(((hugs)))
Carol
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Moth, Adding my care and concern for you. So many of us are here for you. 🌺
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moth, i am so sorry to read about your progression. these words just seem so trite to such a serious situation.... fingers crossed that cisplatin works for you. kindest thoughts to you, dee
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Moth- My thoughts and prayers are with you. Gentle hug from here.
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Moth - Thank you for posting an update. You have been in my thoughts. Prayers that Cisplatin turns things around. Peace, hugs and f cancer.
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Moth. Happy to see you post - you know you are in my thoughts and I’m praying that the chemo turns the liver numbers around quickly. It is possible - prayers that it happens for you as well my friend. 🙏
An update from me, I’m seeing some indication that Xeloda is once again doing it’s thing. My liver numbers have improved and my TMs had a substantial drop after the second cycle. I won’t know for sure until I scan on the 20th but it does seem positive. Interestingly, my TMs were pretty non-responsive until things started to get out of control in the liver. Now, while not huge numbers, there is a definite correlation. Relief after back to back fails.
Unfortunately, on the down side, my RBC morphology is already showing signs of marrow toxicity. This is the issue that had my MO take me off Xeloda after six cycles last June.In addition, HFS is bad this time around. I think I’m getting back on top of it but have deep blisters on both heels and very sore fingers. I’ve been trying to limit my walking but it’s tricky with a dog. Not sure what my MO will want to do - I think we’ll stick with my current dose for now (the HFS wasn’t at its worst when I spoke to the GP prior to the next cycle) but he may want a dose reduction for cycle four assuming we see improvement in the liver. Beyond that, the marrow is a problem but so is th fact that I’m not responding to other chemos! Eek….
Sending positive thoughts to everyone.
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SS glad your numbers are improving but hope you get the RBC under control. We scan around the same time..i am the 21st and 22nd.
Moth I have been talking to you on IG but just wanted to add here im still hoping that this works for you!!!
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Thanks Nicole. I realized this morning that all of the side effects of Xeloda have come on much more quickly and more forcefully than when I was on it before. Brain fog, fatigue and the HFS… I understood the impacts were cumulative but thought after almost a year off of the drug (finished previous treatment early June 2021) it would take some time to build up again. Nope… interesting.
We play a weird game with this disease, don't we? Balancing beating back the mets with not killing our selves with treatment. 🙄 Right now I'm more concerned with getting the little blighters out of my liver so a few side effects aren't going to deter me!
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SS- what are your RBCs doing? Mine were a bit weird last month and got them redone today and hope they calm down. I’ve had strange labs come and go before.
The HFS flared a little recently and is now calming again. What was different- who knows.
I hope the lab and feet problems are fleeting.
Hi Moth - hugs to you
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Hi nkb,
There are a number of measures that start going wonky for me when I am on Xeloda. In addition to a drop in my red blood cell count, the stress on my marrow shows up through MCV (mean corpuscular volume - measures the size of red blood cells with mine being too big which indicates macrocytic anemia), MCH (mean corpuscular hemoglobin - same deal… my cells are too big), RDW (red blood cell distribution width - variation in size beyond what is normal which is another sign of anemia) and the general morphology of my red blood cells which is already showing as abnormal. All points to marrow toxicity. I had been completely normal over the last 10 month so am shocked by how quickly things changed. It likely means staying on Xeloda is not an option for me. Damn…. But we’ll see.
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sadiesservant - It's so crazy how we can take the same drugs and yet they impact our bodies and cancer so differently. I wish X wasn’t so hard on your body. 😢 I’m on xeloda and my RDW, MCV and MCH are high but not that far out of normal range. How high are you? I’m trying to gauge what the threshold is when an MO starts to get concerned.
I have a PET scan tomorrow and since I have to fast in the morning, I won’t be able to eat before my morning pills. What do y’all do? Skip a dose, take it on an empty stomach ortake it late? In my case I would be taking it 5 hours late. My MOs nurse said to take it late but I don’t have that much confidence in what she says. And she’s never had to deal with side effects like the ones these drugs can impose on us. I’m at the top of the dose I can tolerate but I suppose getting more in my system this once won’t kill me. I wish my doctor had called me back and not her nurse.
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Interesting that you also have issues. There is also a difference in clinical guidelines to consider as I'm in Canada. Apparently here they sometimes continue at a low dose whereas I know several on this site who have continued on at regular dosing for years.
My RBC numbers are not that high, yet. I suspect that my MO did not want to push it as my understanding is that damage to the marrow can be permanent. He was likely also taking into consideration my previous issues. Ibrance almost completely annihilated my RBCs - my Hb got lower and lower to the point I was teetering on the brink of needing a transfusion, even with a reduced dose. MO said stop!
As to stopping the meds for your PET, I can’t help. I’ve never had a PET and don’t have to worry too much with CT. I laugh as they always tell me to fast for two hours before the scan. I do it but it’s completely unnecessary. The most important thing is to hydrate, primarily to get the contrast flushed out of your system. But PET is a different story. Five hours late might be okay. Or could you take it early? Not sure how long you need to fast.
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sadiesservant,
I had to laugh at your comment re fasting for a CT. I had a CT today and the directions said to fast for THREE hours. Those are the new directions from my provider. Seems like a bit of overkill. Not only that, fasting for that long makes me feel like you know what, so not the best way to go into a scan.
Also, usually I have to drink two containers of contrast for the test. Today they handed me one container and one small bottled water. When I asked about it, they said that they were experimenting with their protocols. I'm wondering if this really has something to do with the contrast shortage that's supposedly going on?
No idea about timing on drugs.
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Ha BevJen! They do so much by “ the book” which makes so little sense if you dig a bit deeper. Ultimately I don’t make waves, it’s just easier. LOL. My really important prep is my superwoman outfit. 😁 No metal… anywhere! Yoga pants, t-shirt and my gawd-awful sports bra that takes an act of god to get in and out of. The superwoman suit allows me to breeze in and out with as little hassle as possible. It’s enough to deal with the occasional multiple pokes as the try to access a vein. Going through my port is tricky outside of regular hours (9:00 - 4:00) as they need an RN. They used to have a two poke max but they no longer adhere to this given that they no longer have a dedicated IV team. My veins, thankfully, are pretty good but occasionally…. OMG!
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SS,
Your perseverance always inspires me! I was thinking of cycling back to Xeloda at some point. Unlike you, I took Xeloda until I progressed. I was last on Xeloda 5.5 years ago so I'm hoping things have reset since then. Thinking of asking to take it with Ixempra. Your experience of quicker, stronger SEs is definitely something for me to keep in mind. It's all come down to a few Hail Mary's but my positive experience with ARX-788 has shown me that those Hail Mary's can come through!
Love and light, Susan
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There have been studies that showed that alternative dosing schedules for xeloda of 7 on, 7 off, worked just as well and had less side effects.
Colorectal:
Breast cancer:
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Husband11- this is a very common dosing schedule especially in the east coast MSK etc. I changed to this schedule as my ANC did not recover from 14/7- my MO wanted to go to 14/14- I had to take so much time off while on Ibrance for this. I convinced her to let me do 7/7 and have never had an ANC issue since. I have been on this schedule for about 18 months. Feet much better also (along with a dose reduction).
It would be interesting to know if cycling back to drugs brings on toxicity faster-
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Thanks Husband. Something to discuss with my MO when I see him next. I expect I will chat with him in a couple of weeks after my scan. I probably need to do something to lower the dose but, to be honest, wanted to hit this with both barrels after two back to back fails.
Thanks Susan but I am actually in awe of you! You have kept going through so many treatments and have participated in several trials. I’m amazed by your resourcefulness and determination! It will be interesting to see if cycling back to Xeloda is an option. I’m also interested in Ixempra as it doesn’t seem to be in use here and yet, Lynne is having success with it.
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