How are people with liver mets doing?
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Thanks all. So 1. Elder I do not take B12 supplements or any vitamins. 2. Moth... my liver numbers are great thanks to the tudca my MO made it clear I do not have ANY cirrohsis as this shows on scans and NONE of my scans show this. Also there is another reason a person can have HIGH B12 A high level like that can mean a person should get checked for the MTHFR gene mutation. It's a simple blood test. Some people's bodies "lock up" their B12 so they can't access it. So the result is anemia, as if I had LOW B12. Also, the vitamin continues to build up in the body. Some doctors say to take Bromelain (the main ingredient in pineapple) to empty out the excess. If I test positive for the MTHFR gene I'll need to use what's called a "methelyzed" form of B12 that is more bioavailable to my body. 3. My MO didn't know about this test (or MTHFR gene) so she is looking into it so I can get it done. 4. BEV...I asked my MO last week to specifically run a test for Iron, ferritin, vitmain panel etc bc after my last infusion I felt very fatigued..so she ran it all. My iron was a little low but she is not concerned...my ferritin was high but not over the limit that is a sign of inflammation she said that is not uncommon on chemo.
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Hi sadiesservant, oh my, the bathroom floor is not a good place to be. You have my sympathy , I only have to take a 1mg of steroids and I am wide awake most of the night, then feel awful the next day; tired and wired at the same time. My oncologist and I often 'negotiate' the need for steroids. Get that egg chair for the veranda as soon as possible and sit in it enjoying a cocktail/ mocktail [not of medication]. I hope tomorrow morning is easier for you.
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Thanks Denny. Much better morning. I have figured out that the water is the biggest issue as, with the steroids, it is quite unpleasant. This morning I made it into more of a flavoured lemonade. Odd combo with coffee but hey… it worked. 1 mg of dexamethazone sounds like a dream to me. That’s about three weeks off when I am on step 2 of weaning myself off. I was hopeful that sleep would come last night but sadly, wide awake at 3:00 AM. It’s so weird being soooo tired and yet amped at the same time. The 8 mg is a killer!
Egg chair purchased - assembly probably tomorrow. 👍🏻
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Nicole,
Wow. That's a wild story about the gene mutation -- and also, it would shake my confidence a bit in my MO since she didn't know about the mutation. I did a quick search, and although it's not jumping off the pages, it seems that this gene mutation has been discussed plenty with respect to breast cancer and also to ovarian cancer. I hope your MO gets on the ball with this so you can get the test done soon.
Good luck.
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Sadie- when I need to drink a lot of water (for Xeloda) I use sparkling water with a splash of ginger ale (I know- not super healthy) but, I find it so refreshing that I can drink enough. Lemonade or ice tea may be the ticket too.
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Bev thanks but totally doesnt shake my confidence in my MO..I trust her completely and actually from what I read in my FB groups most doctors do not actually know about this ..apparetly Natrupathic doctors usually do..(and that is prob bc they run tuns of blood work on things like vitamin deficiency and look for things like EBV etc.).there was more than few confirming this. I think this is mostly bc its NOT common to be high in B12 but rather most are low....
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"They" say you should not take any B12 supplement for a few days before a test that indicates B12 levels. I took my B12 daily and on the same day as the test. So who knows?
I'll have to ask my MO about the MTFHR. Interesting.
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Thanks for the tip nkb. I’ll give it a try but typically have not had this problem in the past (this is my third time on Xeloda). The problem is the steroids which are really impacting my sense of taste. Lemonade seemed to work this morning as it had some flavour but then I had trouble with a sore throat/dry mouth. 🙄 Probably the radiation. Ginger ale may work better.
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Elder..yea I don't take any vitamins or supplemnents that have B or B12...so I think mine was accurate reading.
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Nicole, I have MTHFR. I am homozygous C677T, which is arguably the worst case scenario. My B12 panel last month clocked in around 8000. I have been anemic off and on all my life, and I am very anemic from treatment at present. (I am having to get both Retacrit and Neulasta to maintain blood cell counts.) I will have to look into bromelain but honestly I've kind of given up on getting it down-- it's been the battle of a lifetime. So many foods are made with fortified grains and such, and they are all fortified with unmethylated, cheap forms of the B's. They are all but impossible to avoid unless I start refusing to eat restaurant food-- but I am often just too fatigued to cook. It's a catch-22.
My naturopath is very well-versed on MTHFR and my other mutations as well (COMT is another big one and often occurs with MTHFR), but I've had to educate every other doctor EVER except for one young, brilliant GP (who told me to never get the flu shot because I would not metabolize it).
~ lulubee
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Sadiesservant, the taste bud funk is just demoralizing, isn't it? Lemons are key here. I buy the big Costco bags weekly and I squeeze them on almost everything. You gotta do whatcha gotta do.
If you have a Sonic nearby, please treat yourself to their strawberry limeade. When I get so thoroughly sick of water that I find myself slacking off on fluids, I go to Sonic and get a Route 44-size to go. So yummy, I have no trouble finishing it, and then I get to chew on all that magically delicious Sonic ice. With little chunks of real strawberries mixed in. It's the best. I'm having one right now, in fact.
~ lulubee
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Lulu... yea I have to agree with you about doctors not knowing about that gene or the testing of it (which I did mention above to Bev) What I have learned is Bromelein clears the stored b12. First step. Then the methylized B12 becomes your type of vitamin for B12 from then on....the person that shared a lot of this with me...her levels normalized with the methylized B12...I am so sorry yours hasn't its got to be scary having it that high
I just hope I can at least get the test. I started the Bromelein today.0 -
Lulubee, thanks for the suggestions. Sadly, I’m in Canada so no Sonic here, at least in my community. It’s not fun but I’m sure I’ll get over this latest hurdle. At least I get my week off of Xeloda starting tomorrow PM. One less bunch of pills to take!
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Help required, I have had progression in my liver [while on Halaven] I found out today I will be getting Trodlevy for the first time on Thursday. I have read the booklet given to me, but I find peoples personal experiences and suggestions have been useful in the past when starting a new regime. As I cannot find a Trodlevy thread I am hoping someone here can help. Thanks.
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hi denny, we have a trodelvy thread here https://community.breastcancer.org/forum/72/topics... Nicole and I are both on it & I think someone else too...
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Thanks moth, I did a search but this thread never came up. I will go and read it now.
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Can't believe they named a gene, "MTHFR"!
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Ha Susan, I had exactly the same thought!
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MTHFR! That’s my laugh for the day! 😂😂😂😂😂
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That's what I thought, too! It's hilarious!
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Susan seriously a week ago I told my husband that every time I see that name of the gene I think of Mother-**** lol
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Thank God I am not the only one who thought that. Just take out the vowels and don't bother with *&^ or blanks.
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I’m thinking I might have the gene ask it is linked to cleft lips and my son was born with one . They never tested me for it but I have a suspicion.
I also suspect my Bili is up again. I can tell by my pee. Sigh
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Dear BAP, we are waiting for your ultrasound very much. Did you talk about milk thistle or cordyceps (hepatoprotectors) with your MO? Or maybe you just need some ringer infusions to wash things out? I am sorry, I know how involved you are, I just want to help somehow:/
Saulius
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hi Salius ,
My ultrasound is tomorrow finally but I won’t get the result tmr which sucks. But it’s getting done. I haven’t been able to talk to her about Milk thistle but I imagine she’d defer me to the cancer clinic pharmacists. If she calls with my bloodwork results today then I would say I’ll ask anyway.
I’m going to try to enjoy today as much as possible. My son turned 7 today and I reminisce about this day seven years ago where I was in full on labour ready to meet my boy 😌😌😌
As always I’ll keep you all updated.
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I have been trying to catch up with all the posts.
Nicole, congratulations to you, your son and d-in-law. It is definitely something to look forward to. My daughter is 28 weeks pregnant and we are all excited too!
I was on Eribulin since Jan2022. After 4 infusions, my platelets dropped and at end of March I had pneumonia which required intubation for 12 days. I was hospitalized for 2 weeks and then admitted to a rehab center to strengthen my leg muscles. I had lost all strength in my legs due to muscle atrophy. I am slowly able to walk again with the help of a walker and PT. That's my saga on Eribulin. I don't know if my MO will put me on a different chemo. I have a scan next week to check my mets status since I have been off chemo for 2 months now.
I am surprised that 2 weeks of immobility has resulted in muscle atrophy. Has anyone seen this happen?
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S3K5 wow omgosh I am so sorry to hear what you went though but so glad you are on the road to recovery!!! Thanks for updating us!
Please let us know how scans turn out.
BAP Milk Thistle did nothing to help my liver however TUDCA did...and also I got Alabama Dee to take it her liver numbers were OFF THE CHARTS she is taking it and now her liver numbers are almost normal I believe... you should get it. its on amazon.
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thanks Nicole ! I’ll look it up !
My liver functions were about the same my MO said. Bilirubin is stable at 22 so 1.5 higher than the normal.
Spine mri came back. L1 was fine. T6 is likely a met. But very small. She said it’s not enough evidence to change treatment so yeah !
Will look up TUDCA . Never heard of it before
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s3k5, sorry you've been having such an awful time but glad to hear that you're in recovery mode now
Muscle atrophy in hospital, esp in ICU is super fast - like days- and very common, esp if you're on a vent for at least part of the time.
I hope you can get your strength back asap
Hugs
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Dear Nicole, thanks, have put TUDCA in my bookmarks! Saulius
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