How are people with liver mets doing?
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hi Salius.
I’m still waiting on dates for the mris and ultrasound . I’m hoping the ultrasound is this week so I can rule in or out the gallbladder. I was vomiting on and off this weekend. It’s been difficult. I do think there are legitimate cirrhotic processes going on considering the hypertension and ascites has not changed and more varicies have formed.
im not currently worried about progression , just the LFTs and bilirubin going up. It’s frustrating. I’m hoping my bloodwork this week will show them coming down. I’ve never hoped for a shit gallbladder than I have in this movement. Then perhaps when they take it out then they can band those varicies lower down. That would be a dream.Anyway, I did mention the heptologist and hopefully she will hear my case before going on leave. Living on an island has slim pickings so it’s like you get what you get.
Fingers crossed I hear from someone this week
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b-a-p,
I know it's a pain, but I would contact your doc and tell them about the vomiting this weekend and see if that gets them to move more quickly on the MRI and ultrasound. At least then you would have some more testing info.
Good luck!
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oh Bev I’m already a step ahead. I have been telling them it’s happening more often. None of them know why. The GI was like “some women who are stressed wake up and throw up”
my Mo said she’d never question this Dr but she even knows that isn’t it right. She did press further into it to try and piece it together but she and many other doctors have kept saying “I don’t know.” And while that’s frustrating alone , atleast they aren’t coming up with BS answers that make no sense.
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b-a-p
Wow, I'd want to smack that GI doc in the face -- truly. At least your other doc is trying to figure it out.
Good luck.
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Thanks all ....thank you BAP
I feel exactly the way you talked about.0 -
Hi All,
Quick update. My RO does not see anything ominous in the brachial plexus. Phew! However, there has been progression of tumours on my spine in the lower cervical/upper thoracic region. Apparently the tumours are causing the vertebrae to spread, putting pressure on the veins enervating the brachial plexus/right arm.
The plan is for a more precise, detailed planning session with five rounds of radiation. Saulius, no, it is not SBRT as that is high dose radiation which would not be suitable in this case (none of my treatments have been SBRT). There are some concerns of risk of permanent nerve damage as I had previous radiation to the area in 2002 as part of adjuvant treatment when I was first diagnosed. However, given the high potential for significant neurological damage if it goes untreated…. no brainer.
The RO also reduced the steroid, thank goodness as I am having enough sleep issues as it is. The MO I spoke to last week (my regular MO away) seems to be a bit over responsive. 😊 Better than blasé but a balance is nice.
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b-a-p - I agree. That GI doc was way out of line. What a ridiculous comment. I could go on grumbling...seriously!
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Oh dear b-a-p, that GI doc really managed the situation badly, sorry for that. I am not too good at knowing all functions of all organs but I'd say ultrasound is necessary asap, and hopefully it can explain the growing liver numbers. It can be that something around the liver and not liver itself is impacting all these things. Doctors must finally look into these issues and solve them. Living on a small island... we'd all dream of that, wouldn't we? I am living 300 km from the sea, so sea has always been the most beautiful thing for me. I just hope they solve these issues and you can finally relax a bit - you have been through too much, to be frank:/ Please keep us updated about your blood work whenever you can.
Sadies, hooray for nothing in brachial plexus! That is important, as bp is a very complicated area (main arm nerves, etc.). My bad about SBRT to the spine area - you are right, high instant dose might be too damaging to surrounding nerves. Otherwise, if you had radiation in 2002 to that area, I think the risk of damage by radiating again is not huge and should outweigh the other risks you are facing now. I am just sad that there are so many things you have to deal with at once:/
Saulius
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Salius and everyone else ,
Yes the GI doc is dropping the ball big time and her comment is unwarranted. I should have reminded her the last time doctors told me “it’s just a part of life” I was diagnosed stage 4! And that’s why I’m in her office for these tests.
And when doctors try calling her and she can’t be effing bothered to return the call or have reports from over a month ago done, it’s just frustrating to the point of tears. I am angered .
Salius , I’ve never hoped for a bad gallbladder so much in my life it would explain the numbers for sure . I have bloodwork tmr so I’m hoping that they have come down and not cm gone up
Living on an island is beautiful I must say but when it comes to healthcare , the province has low numbers of dr retention. There are 99000/500000 that live here , that are without a family doctor leaving many people in the lurch.
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Dear b-a-p, yes, I think there's a chance that some organ (like gallbladder) surrounding/supporting your liver can have an influence on what happens. The most important thing is to find this out, so I pray this resolves soon, and "those who search will find the way". Please keep us informed about the blood work.
Saulius
P.S. Uhh... your island has as many people as our capital city, crazy:)
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Hi Salius,
So my Bilirubin and Liver Function has slightly improved. My bilirubin is still 1.5 points higher than normal but last week it was 8 above so that's good. I'm still vomiting intermittently and they ended up booking my Ultrasound and MRI's for 2 weeks from now. My MO is trying to get the U/S moved to earlier and I hope she's able to do that Because I'd really like to see if the gallbladder is the culprit so that I can treat that or rule it out
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Oh , and I was born and Raised in Toronto so I'm used to a big city. But this place where it lacks choices in some areas, is beautiful. You should look up our Tourism videos. I live in Newfoundland.
One time Jimmy Kimmel's team came for a week bc we have a town called Dildo and people think it's the most hilarious. We have other cute names though like " Little Hearts Ease" and " Hearts Delight" And 7000 Planes were diverted here during 9/11. It's wild. Small island , big aspirations lol
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Omg, dear BAP, your last post made me laugh so much, I am sorry:) "Hearts delight":) Canadians are amazing! I would give everything to live on an island - I travel (traveled?) much and know what island-feeling is. Sadly... my country has NO ISLANDS, not one, can you imagine?:) Newfoundland is super famous and very beautiful, and of course I know it from many pictures and tv programs... I remember when I was little and USSR broke, where only state propaganda was shown, and I first saw BBC and Travel Channel at ~1995 - I was sitting for months with my mouth open watching these travels over USA, Canada, South America, Africa, Asia... ahh, times have changed so much:)
On another topic: your bilirubin has slightly improved ad that is good news, means liver is coping. What about other liver numbers, like ALT, AST, ALP, GGT and CREA? I am sorry you are still vomiting, and therefore it'd be good US could be arranged sooner. I know it might be costly but could it be arranged sooner in some other place (like 2nd opinion or smth)?
Saulius
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😊 Saulius, I live on the other end of Canada, on Vancouver Island. Both islands are beautiful places and I feel fortunate every day to live in such a wonderful place. I simply can’t imagine being away from the sea! I worked in international development for many years and while I travelled to many amazing and wondrous places, I always had a special thrill on the last short flight from Vancouver to Victoria looking out and thinking “Yes, I live in one of the most beautiful places”. I will say, Newfoundland (I had colleagues there who I worked with) has manyunique charms beyond some interesting names. It is, by far, the friendliest place in Canada! The hospitality knows no bounds. Our group was even offered a lift in a paddy wagon on our way back to our hotel. We politely declined… 😁.
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Sadie ! That’s hilarious. paddy wagon ! I have never been to Vancouver but my dad lives in Vernon. I get jealous of your beautiful weather . NL is not known for weather lol. It has snowed in June more times than I can count. Lol. My Town name is lovely and close to the city but it’s so small if I named it here, anyone could find me lol
Salius you must visit some day ! It is gorgeous. We have Gros Morne mountain and a lot of heritage sites. It’s lovely.
As for my other LFTs , all she said was that they improved as well . Palliative dr said “they look stable” She was also trying to figure out the vomiting. She wants me to take anti emetics daily 4x a day to be proactive but I hate taking things when I feel fine. But I can try. My MO is trying to move the ultrasound up. Unfortunately here , it’s all public health care so I couldn’t pay to have it done earlier because I definitely would if I could.0 -
Kiddy Viddy? 😁 No answer required but that is a name of a lovely little village that has remained with me. I had to laugh about the weather. Our colleague at the university told us “Don’t even think about booking meetings or anything else in August.” Everyone is on vacation as it’s the only guaranteed good weather! I do love that my snow shovel sees very little action here.
Hope they get your tests asap and the numbers improve. You need a break and to enjoy the better weather when it comes!
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So I had a big blood draw done and one of the tests was iron....
Component Your Value Standard Range Iron 25 ug/dL 40 - 145 ug/dL
then it said Iron Saturation my value : 8 %. Range 15 - 50 %So I am taking this means I am low in iron..but I do not want to supplement 1. bc cancer feeds on iron and 2. bc iron supplements constipate... Anyone have low iron and just leave it?
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B-A-P, I just want to say that I saw the play “Come From Away”, based on the planes (and passengers) being diverted to your area after 9-11. It was very well done. It showed the generosity and empathy of the residents who did what they could to deal with so many unexpected people for several days. I don’t remember how many days?
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Rosie don’t quote me but I think about a week a majority had left. I’m not quite certain as I was in 9th grade in Toronto at the time lol we do have a piece of the tower here in Gander we were gifted a few years Ago. I love the play- people were really like that and opened their homes to strangers. It’s the NL way
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So I know found out I have B12 levels off the chart... which yea..can cause cancer.... but seriously the high end of the range is 900 I am at 2000.... I am scared... this is crazy as if I don't have enough...
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nicole, that could be caused by liver problems. When the liver gets disrupted it can dump b12 into the blood but still your overall b12 might be fine (I know it can happen esp in alcohol damaged liver but I'm guessing livers with tumors might also act weird like that ). Is your oncologist concerned?
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We are thinking of all of you and sending hugs
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Nicole,
What kind of a blood panel did you have done? I recently saw a hepatologist who ran every blood test known to man with respect to my liver -- I can't find a B12 test in there, but it might be under something else. I agree with Moth -- what did your oncologist say? I had stuff that looked off, but the hepatologist said that it wasn't something she was worried about. If your oncologist doesn't want to discuss further, then ask for a referral to a liver specialist/hepatologist to look at your latest scans and bloodwork and tell you what they think.
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I had tests run to check my iron levels and that is how I found out I had high B12 levels -- not off the chart but still higher than the stated range. My MO told me to stop taking B12 supplements. I had started using B12 in 2019 when it was suggested it helped lessen neuropathy during chemo. My liver enzymes are all within range expect ALP, which is only a little elevated.
Nicole: I hope the elevated levels can be addressed and put your mind at ease.
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Dear BAP, Sadies, ehh, you nice people, you made my appetite to visit Canada grow and hope one day I will visit!:) It is such a vast country (Canada = all Europe), and you have it all: seas, mountains, plains, huuuge forests and much more. Thanks for invitation:)P
On a serious note: BAP, it is great all the liver numbers have improved. Let's just wait for the ultrasound, as the vomiting thing is a bit strange - I have high hopes it is not liver related and can be fixed once the reason is found.
Dear Nicole, have you tracked your B12 before or is it just first reading? It can be that it was higher for some time. As Moth said, if it is liver related maybe lower liver numbers would mean lower B12?
Saulius
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Nicole I'll keep you in my thoughts. I'm also wondering what your hepatologist and/or oncologist have to say about it. I'm only a general practitioner but sometimes some things can look scary for patients on the blood work but for us it's meaningless. I hope that's the case with you too.
I am so thankful for this site as it teaches me about all the things I need to pay attention to in regard to my mum's health. It's been 2 months since her cyberknife and she's feeling great now but she had major side effects regarding her stomach.. GERD, nausea, pain, also fatigue. Awful. She's doing much better now.
Some happy news before we go for a check up. Mum and I just returned from our trip to Portugal and let me tell you IT WAS SO HEALING! I had my old jolly, funny mum back. She really loved it. Made my heart swell. We spent everyday walking over 10km around Lisbon. Can you imagine?! She's a champ and my hero.
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I found a very good resource on the issue of ascites that I would like to share. After about 3 years, my wife's ascites is coming back, so I am looking into treatment options.
Ascites: Treatment, Complications, and Prognosis | IntechOpen
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Sadiesservant,
How did the appointment with the RO go? Does your hospital have Proton radiation therapy?
Hoping the treatment will stop the progression and pain/numbness.
Hugs, Susan
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Husband11,
Thanks for posting the link. There is so much going on in that article that I need to read it again slowly to try and digest it.
Best wishes to your wife. I hope you all find the cause of her ascites and can clear it up.
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Hi Susan,
The appointment with my RO went very well. She was lovely, spending a lot of time with me going over the scan. The problem was pretty obvious with a new lesions invading the epidural space. Pretty sure that is the source the evil that I have been dealing with!
I had my first treatment today (not proton but mapped accurately to avoid collateral damage) which was pretty uneventful. Four more to go. I’m just a bit worried that I may have overtaxed myself after what was a rough start to the day. I am having a terrible time with sleep as a result of the steroids that my RO has me on. I take 8 mg first thing in the morning with my pain meds (Gabapentin and hydromorphone) and an anti nausea pill and it is still impacting my sleep. 🙄 Then breakfast and I take my Xeloda with a big glass of water (yum… not… I have never been a water drinker and feel yucky drinking large amounts, particularly with the taste changes due to the steroid). About 30 minutes later I felt like I was going to pass out. Bathroom floor for me - didn’t faint but threw up a ton of water. Blah! Of course, biggest issue is, at that point, I have no idea how much of the pain med/steroid cocktail I actually absorbed. Sigh…..
Of course I don’t make things easy for myself either. I was on a mission today to buy an egg chair for my veranda. I’ve been in my old house with a wrap around veranda for 25 years and, with work, I never seem to have time to enjoy it or my garden. I’m determined that now that I finally made the decision to go on full LTD I am going to turn it into my personal oasis. 😁 Travel is out for me for a number of reasons including my 91 year old mother’s health and mobility so joy needs to be snatched close at hand. I feel very irresponsible but….
Sorry, this is a bit off topic as it’s not liver related. I’ll be interested to see my blood next Friday as I think my liver is struggling a bit but hard to say with the potential side effects from my pea soup of meds.
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