How are people with liver mets doing?
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Hi BevJen. I am surprised that an MO would change therapy based on a TM result without verification of progression by scan. I have been told repeatedly by my MO that they would never do this. Can you help me understand
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SP,
Ha, ha -- journal writeup? I doubt it. I just want to get some more time, as we all do.
I asked yesterday about getting a Covid vaccine at Hopkins, but they don't have any yet -- my MO hasn't even been immunized. Keytruda to start within next two weeks.
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My onc got her vaccine. She was giddy telling me. She says she sleeps so much better now.
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Sandi thanks for asking..I have not been good. About 5 days ago I started having SEVER stomach pain...my husband believes its because the Eribulin (my chemo) was for months causing silent GERD/ Acid Reflux...so it was there as an underlying issue and then when I took the 5 days of steroids after the Y90 that coupled with the Y90 itself has caused what we thought is an ulcer..seriously...the PAIN is SOOOO SEVERE I literally found myself saying that I would rather just die than deal with this...I know that may sound dramatic but I can't explain to you...not only did I feel it in my stomach (up high right below the cleveage) but also in my back!! The past few night have been awful. I wake up anywhere from 12am- 3am and am in pain for 2 -3 hours... I switched 3 days ago from Nexium to Priolsec I am thinking this MAY be a little better..but every 4 hours I have to take something...like PEPTO...TUMS...I am drinking Aloe Vera Gel now.
Today I went to the GI Doc.He said he cant be sure whether the issue is from the steroid or the Y90 or both. Since I do not have any blood in stool and I am not vomiting blood he is not overly concernced with the bleeding ulcer right now. He also feels I should take the steroids again when I have the next Y90
. I DO NOT want to . He wants me to increase the Priolsec (I knew he was going to say that) but not to take both together...to instead take 1 in the morning and 1 at night...he said they really only last for 18hours (not 24) so this could be why when I take 1 at 5am and then I wake up between 12am- 2 am in pain...but that doesn't explain why I still get it all day...on and off...either way he also called in this liquid that coats the esophogus and the stomach and works really well for the pain. He said its not a fix it just helps with that pain. He wants me to email him in a week and see if I am any better, even a little better. He feels the Y90 takes a toll (even though the IR said it shouldn't have caused this issue) he said it can especially since my body was compromised from the chemo and I had Acid Reflux from the chemo. also did read on line that it can take 3-4 days for the prilosec to kick in...today was day 3.0 -
Nicole, sorry to hear about your pain due to GI issues. I went through this a couple of years ago. Had an endoscopy which showed bleeding ulcer and GERD, all caused by chemo.
My GI doctor has prescribed me Dexilant (dexlansoprazole) twice a day during chemo. I also take Pepcid (Famotidine) if the acid reflux increases. Prilosec and Nexium helped only for a few hours. I was given Sucralfate to coat the stomach. So now the pain due to GI issues is almost gone. I still have to watch what I eat - bland, easy to digest foods.
Do you think you need something stronger than what you are taking currently? You could also request your MO to give you IV Pepcid prior to your chemo which may help. You shouldn't have to go through this pain everyday. Hope you find something that works for you.
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So sorry Nicole. You have been through so much, but so brave fighting this battle. I hope the docs can get you to a place where you feel more comfortable and out of pain. Praying for a better QoL for you.
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Nicolerod..you sound so miserable. SK35 has good feedback. I am copy/pasting her suggestions.
i hope your MO will address this pain soon, so you can heal. Constant insufferable pain does nothing to help your emotional psyche.
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Thanks Ladies...Its me that refuses the Pain Meds..I just would rather deal with this than with my constipation issue.
SK....yes the GI doctor prescibed something that coats the stomach and esophagus so I will take that tonight when the pain hits. I have been taking pepcid .... I want to give the Prilosec a chance, like I said they say it takes 3-4 days to really start working and today was only day 3.
(((((hugs)))))
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I am gonna cross post this...
So I was 16 days out yesterday from my Y90...last night to relax I took a bath with epsom salt...I used regular plain Epson salt and little of the one that had lavender smell *****NOTE: I have used both of these numerous times in the weeks prior to my Y90***. Well...last night I got out of the tub and the light was out in the bathroom so I didn't see this...but this morning there was a puple like color in the tub where my back and arms were I will attach a pic...even bleach is not taking this out????! I did dry brush prior to the bath..but I have done this before and this never happened..??? I did not and do not wear any lotion, oils etc..nothing! Could this be from the Y90 isotope??? I googled but found nothing. In the oic it looks light bc we already bleached. But it was dark purple.
I do usually take a Benntonite clay bath about 3-5 days after PET scans ya know to pull out the radioactive stuff...but I didn't know epsom salt could do it too?? I am thinking thats what happened?
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You didn’t wear a new purple or blue shirt yesterday, did you?
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no
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That’s right, Shetland, Christmas does NOT have to be put away till Valentines Day. What was I thinking? Lol
I only have one room of Christmas stuff left to put away. I can just shut the door to that room and pretend it is done.
Seriously, I am making headway. The cleaning desperately needs to be done, whether I have chemo or not. I just do what I can each day. At least my bathroom and bedroom are clean. I have some days when my energy is better than others. But, I can see progress in my house. Still much more I want to get done.
Nicole. I don’t remember having the pain you are describing after y90. I do have reflux and it can be very painful. I was DX many years ago and it’s under control now.
Yes, I think I will ask for the gloves prior to getting my infusion, or do I have to bring ice, etc with me
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Nicole- no answers for you. My y-90 was not so rough. I care that you are suffering. 🙏🏻
Dee
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Nicole,
Wow, you seem to get EVERY side effect of everything you try to do -- it's amazing. And I feel for you. I don't have any answers for you, but I thought I read somewhere that the radioactive stuff doesn't leave your system fully for 30 days. So that would be the logical thing that happened here -- the Epsom salts pulled some remaining radioactivity from your body. But -- geez -- I might be inclined to call my IR or tell her about this -- I mean, maybe they can modulate what goes on in your second y90.
Grannax,
Glad that you are feeling better and that you have more energy. It's interesting how these different treatments hit each of us different ways. Today is 4 weeks since my ablation re-do, and other than the first few days, when I felt great, this is the best I've probably felt -- still not 100% yet, though, and my appetite is really off. Cannot stomach some things -- even the thought of them makes me feel nauseous.
Lucky for all of us, I guess, that the liver is pretty resilient. Hope you both are doing well.
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Grannax2, can you come to my house to put away my decorations...
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I never got around to putting ornaments on the tree. DH just put the lights and star on. It was pretty and smelled wonderful. So now I have less to put away!
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I'm having to laugh about the Christmas decorations. Taking them down is the LEAST fun. Two days ago, I moved all my decorations, except the tree stuff, to my dining room table... you know, too make them easier to pack up (ha!) - and, of course, they're all still there. Maybe tomorrow...or Sunday. My only goal is to have them packed up before my son comes for a visit in a about a week, so he can help my dh put them on the high shelves in the shed.
Dang, Nicole. The purple stains are crazy! Maybe it's good that the Epsom salts are drawing out the...impurities? I'm sorry you're having a tough time after the y90, and hope it settles soon.
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Thank you ladies...yes this is a rough go...and now just thinking I am going to do this again in a few weeks...I am really not wanting to..especially bc I have to be fasted for the procedure and the stomach issue is unbearable in the morning
. I don't know what I am gonna do.0 -
Nicole, I hate to hear that you're suffering and hoping you get some relief ASAP. Is postponing the 2nd Y90 an option until you're feeling better?
Grannax, I'm glad to hear that you're feeling better after a rough December. We had no holiday decorations of any sort and my hubby had emergency eye surgery right around Christmas, so the holidays were pretty damn gloomy! Things have been looking up for both of us, though.
Happy New Year to All!
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Crossposting from Taxol thread -
My scan in September was awful (I had been on Xeloda) with rampant progression to several lymph nodes - something I hadn't seen since my initial MBC diagnosis late in 2015 and growth in my numerous liver tumors. I knew I needed something strong, an IV chemo, so my MO and I agreed on Taxol. He's been practicing for decades and was (and continues to be) suprised that I wasn't given Taxol early on.
This week I had a CT scan of my torso and an MRI of my neck and cervical spine.
I saw my MO yesterday and the results couldn't have been better – talk about a Happy New Year! I am over the moon!!!
- The soft tissue / osseus mets issues can no longer be visualized (I felt they had been resolved because a frequent burning sensation in my upper back had gone away. Stable multifocal osseus mets.
- Resolution of different areas of lymphadenothapy
- Resolution of subcutaneous and intramuscular metastatic lesions
- SAVED THE BEST FOR LAST!
- Decreased multiple metastatic hepatic lesions resulting in pseudocirrhotic appearance of liver (MO says this is scar tissue)!
- Even my old school MO, who has practiced for decades was astonished! I told him that the Taxol came through for me at the right time and that the Druids were looking out for me (joking because the Yew tree from which taxol was derived was sacred to them).So, now I just have to be religious about icing during chemo and taking other measures to keep my neuropathy from worsening – already stage 2. Other than that, no major issues. It feels so good to get great news and am hoping the same for all of you, too!
Katty
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Kattysmith- Woohoo !!!!!!!!!! Congrats!!!!!!!
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Kattysmith that is incredible!! Awesome!!! Amazing!! Such good news to welcome in the new year! Wahooooo
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Kattysmith, Wonderful news! I’m celebrating with you!
Nicole, I’m sorry about your recent struggles. I hope you get some relief very soon. And of course, I hope the Y90 did and will knock out those mets.
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Kattysmith,
Wow, that's some report. Happy for you.
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Katty, what fantastic news! Interesting about the druids and the yew tree. I like to say to "natural cancer treatment" folks that I'm all for extract of Pacific Yew.
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YAY Katty...so happy for you!!!
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Nicole, I'm sorry you're having so much pain. I hope it improves quickly with the meds and you can get your next treatment without complications or delays. I did read that peptic ulceration was a possible complication of Y90 - is this what they think has possibly happened?
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Kattysmith- rejoicing with you! Happy Dance 💃🏻💃🏻💃🏻
De
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Katty: so happy to read your news. I knew the Yew had cancer treating properties. I must have forgotten it was taxol and not some other "potion" Yews can live for thousands of years. Ancient Celts saw them as a symbol of rebirth; age in youth and youth in age.
I was surprised and very happy that I had very few SE's from my Taxol treatment. The tips of my thumbs have stayed a bit numb but the rest of my hands and feet are fine. I discovered my head is actually quite a nice shape...ha ha. (it is nice to have hair back, though) Taxol gave me a very bright pink face the day after but the next day I looked like me again. Wishing you the very best and more good news.
Blessings
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Moth..thank you...actually the GI dr. said he doesn't think I have a bleeding ulcer bc there is no blood in my stool and I am not vomiting blood. He thinks its more just my stomach reacting to the Y90 coupled with the acid reflux / Silent GERD from my chemo I had, had. But yea, my stomach is still not right...my liver is still sore...and my next Y90 is Jan 26th... I have not had chemo in over a month...and wont have it for another month so who knows whats gonna grow now...AND on top of all that....we think the chemo stopped working anyway...so again I only got 3 months out of a chemo...not looking very good for me...
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