How are people with liver mets doing?
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no words...
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so sad about LFF. This isn’t fair.
So update
Cancer wise things are okay. Will have an mri of my spine and liver but there's not a worry of significant progression. There could be bone Mets but it’s so small Treatment wouldn't change which is a good thing. She said it’s reassuring they can’t see anything .
My bilirubin and liver function however has shot up again that landed me in the hospital last summer so noW I'm scared shitless. I do have gallstones so it could be it and everything could be fine but there's worry among my team. And I just can't take it anymore. I'm just so dang sad and scared .
And I need an ultrasound of my gallbladder. And if full of stones then I will have it removed but if it’s not that then we are back at zero. We are trying a liver mri but we still don’t even know what caused my failure last summer.
Sigh
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b-a-p,
I can't remember -- did you ever see a hepatologist? I know that our docs should be able to handle all of the info that pertains to our disease, but I found seeing the hepatologist very comforting because she specialized in liver health. She reviewed all of my scans and reports, did a physical exam of my liver, asked me about my history, etc. I would highly recommend it. It might give you some peace of mind.
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hi Bev ,
Not technically no.. my GI can do some liver stuff but the other who’s going on sabbatical is a heptologist . My MO was hoping she’d have the GI report from April 8th and the woman never got it to her so she’s gonna call. I’m going to call tmr and see if we can get the heptologist to chime in. I live on an island so it’s slim pickings. I’m hoping I’m well enough to travel to toronto in June and they have a large cancer Center so I’m hoping I could maybe get in there for an opinion. I can’t fly bc of the history of varicies and portal hypertension so we have to drive and take a ferry. Will take two days. So I gotta be well enough with my LFTs and such since I was in such a bad and similar place with them in august and September.
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b-a-p,
Oh, okay. You've got to be safe when traveling or my whole theory on a consult making you feel better goes kaput. Hopefully your MO can get you some more info, though, from the docs who you can access more easily.
I felt better after seeing the hepatologist, but the other day I had a Telehealth visit with my MO. This is the second time that she's made me feel like I'm circling the drain. I'm not exactly sure why, because my recent CT read "stable" but now she's talking about my lobular cancer and how sneaky it is. Uh, yes, I know this -- I've lived with lobular cancer since my original diagnosis in 2003. Why all of a sudden she's focusing on this I'm not sure. My guess is that maybe she has another patient who has lobular who isn't doing that well, but I don't know. And it's hard to read with these darn Telehealth visits.
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b-a-p,
Can you speak with the doctors in Toronto via Zoom? I know face to face is best but two days of traveling sounds difficult.
Hugs, Susan
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So.....I think I definitely have progression. after months of my bilirubin being 0.5 -0.8...its been 0.5 recently it has now jumped to 1.1. I am trying not to think the worst but we know the tudca has been helping myiver so much and has even brought my never lowering All Phos from the 600s to today high 200s....but now the bilirubin i is on the rise I'm scared and mad. The ONLY thing I did different today was I took my ivermectin at 530am and had my labs at 730am I took it with the tudca though. So I asked my MO to set up labs for Wed so I can see if it goes down on my off days of Ivermectin.. I have been on the ivermectin though for over 3 months so I know it's not that...but hoping and praying it was bc I took it 2 hours before the labs?? If not...I'm screwed. Only 2 treatments left
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Oh Bev,
I hate when they do that. We are all individual so one persons lobular cance should not be lobbed in with yours espeically when you're stable.
Susan, The plan was to visit Toronto in June anyway since i'm from there and my family and friends are there. So it's a pit stop for sure if I can manage to get in. But I will ask my MO regardless if even a Zoom consult could be good to get things rolling. I'm not sure though.
Nicole, my bili has gone up and down. Doesn't necessarily mean progression but I hope it goes down for you. Mine is way up and my PET didnt show mets so I'm really hoping it's my gallbladder
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Thanks BAP it's just for me that's my "tumor markers" ya know 😔
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nicole.. hoping for the best0
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Thank you BAP
I CANNOT TAKE THIS IM SOBBING.... I had 2 people die in the past 2 days...I just hate this...I just hate it. and the one had little boys .....omgosh...I cant....I know I am not suppose to hate...but I HATE CANCER I JUST HATE IT..... I know the Father is using this to transform me...but I HATE THE CANCER...and everytime someone dies..I realize I am going to go soon I only have 2 treatments left....why cant i have SOMETHING FRIGGIN WORK FOR MORE THAN 3 MONTHS IT JUST SUCKS AND ITS NOT FAIR!!!!
Sorry for the rant...
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Nicolerod - You deserve a rant. You’ve been dealt a shit hand. I’m at a loss for words of comfort. Just know that we are here to listen. We get it. We don’t want to “get it” but we do.
But I’m still going to hold out hope that your next drug will kick *ss. Stranger things have happened. Hugs.0 -
Trust me Nicole I know the feeling. To hear my numbers have gone up again like they did when i was in failure , has felt defeating. Im scared. I have a little boy turning 7 soon and I don't want to ruin his birthday with this mess . It's not fair to any of us. i hate it too. I really really do
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Thank you so much RK and BAP I know I sounded so horrible there (looking back now
. ) but I just had so much built up inside me and NO ONE in real life gets it except my dear husband. So I have to vent here .0 -
Nicole, I say vent away! Especially if it helps you feel better.
BAP, thinking of you and hoping you have many, many more years with your son.
I’m feeling so sad for LFF’s family. Her husband (or was it her son) who updated her Caring Bridge was so lovely in how he wrote about her strength and his own patience in waiting to see if she would fight her way back or if this was her time. Another one gone too soon. 🌺
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Oh no, our dear LFF:/ May her soul rest in peace... very very sad news:/
Our dearest Nicole, you can vent away here, never apologize for that - we understand what you feel. I just want to give you a big big hug and I pray there's no progression, just some false flags.
Dear BAP, being scared is... I am scared too... because of you all, because of my Sandra, because of our children but... this feeling helps us survive. Knowing you, and knowing Nicole, guys, you are best survivors, you are an absolute inspiration on these forums. Knowing your stories and how much you have been through... I cannot say and feel anything less than pure admiration. I have a feeling you'll have many more years to live - if someone deserves it on this planet Earth, it is you guys.
Saulius
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Help. My PET/CT was just denied by BCBS. 😡 I’ve been metastatic for 26 months and this is my first denial. They want me to get a CT/bone scan. I have no problem getting a bone scan because a different technology may actually help determine what exactly is going on in my sacrum, left hip and femur head BUT I want to be able to track my liver lesions closely.
I started out bone only but last January it progressed to multiple bone areas as well as my liver. After the PET showed liver involvement, I received an MRI which showed lesions in better detail. The MRI showed more lesions then the PET. What type of scan is the preferred technology to track liver progression? Also, if you were denied a PET/CT by your insurance, were you successful getting PET approval afterwards?
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Nicole, never apologize for your feelings. No one deserves this.It's unfair to us all. I've sobbed on and off all week. I've even cried at my sons school meeting today because I just want the best for him. I've had the Why me? cry over and over. I've had my share of hard times believe me, and I feel so tired of dealing with trouble after trouble. It's like I keep having to jump through hoops to prove I deserve to have a long life. It's awful. to feel. I'm hoping so much for you that you'll find that magic something that just finally clicks.
Salius, my Salius. Forever a cheerleader on all our sides. While sometimes people's positivity comes off as fake, yours never does. You seem like the most genuine soul and i'm aware that going along this ride with your wife is the reason why. You're in it with us.
RK, can your MO write an appeal saying that the PETCT is the most accurate in your case especially for consistencies sake? I'm very lucky in Canada where scans are very rarely denied and we don't nee insurance approval. Things move slower but I guess that's the sacrifice we make. I do hope you can get that appealed. How frustrating.
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Saulius, it’s always wonderful to hear from you and I agree with B-A-P, you are the best and most sincere cheerleader!
RK, I’m not an expert but I don’t think you should be concerned about having a CT instead of the PET. I’ve actually never had a PET scan and have only been monitored via CT (and bone scans but they are fairly useless). PET scans are more time consuming and expensive and have always been more difficult to access here in Canada. MRI is great for visualizing soft tissue but, as you know, takes a lot of time.
CT will allow them to effectively watch for increasing size of the liver mets and identify any new mets. If you are undergoing local treatment for the liver then that likely changes things as they would probably want to see the activity of the tumours. I would reach out to your MO to discuss but you may want to pick your battles, arguing for PET at certain junctures and using CT for ongoing monitoring. Hope this is helpful
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RK, I’ve never had a pet scan either, and I’ve had liver mets from the start. I’ve been monitored with CTs and MRIs. My previous MO wanted me to have a Pet scan but it was denied by my insurance too (Med Mutual), so she stuck with MRIs over my time with her. My new MO has requested CT, (chest, abdomen, pelvis) to see my liver mets, and lumbar MRI to see my spine met. Like SadiesServant, bone scans have been useless for me too, missing a large spinal met that required excision because it was compressing my spine. I believe I’ve read that MRI is the best for seeing liver mets but CT is good too.
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RK- My MO thinks MRI's (abdomen and pelvis) are the best for viewing my liver lesions. So we do MRI's every 3 months and monitor that way. Before that, I did CT's (abdomen and pelvis) to monitor the liver mets. I have only had 2 PET's this whole time. 1 at diagnosis and 1 when we saw progression of the liver mets on the CT/ MRI.
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RK- Someone posted that the insurance company rarely actually denies a PET they just strongly suggest to the MO that they will pay for a CT. this person said if you ask for an actual denial for a PET in writing they will back off. Not sure if this is true. Worth a try I read an article recently that says MOs complain they are spending too much time battling insurance companies to get what their patients need
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Hi All. Results of my MRI are in and apparently I have progression on my c-spine and in my brachial plexus. The MO I spoke to (my MO is away this week) seemed very concerned about the numbness. It's not that bad yet but she is putting me on steroids to ensure we preserve nerve function. I'll talk to my RO on Monday but radiation is in my future. Thank god for my RO and her magic machine.
This makes it five (well, I guess six as it sounds like this involves two areas) that I've had radiated. This is the gift that keeps on giving! I’m just happy to know I’m not crazy and we have found the source of the pain. I have things under control now thanks to a combination of meds but it has been brutal!
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sadiesservant, oh I'm sorry you have received this crap news. Glad you have an explanation for the pain & a treatment plan but oh boy, I really wish it had gone another way. I hope the steroids work quickly & that your RO works some magic. Sending hugs
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hi sadiesservant, sorry to hear you still have pain, but now its source has been discovered, pleased you have a plan to zap it away. A big cheer for radiologists and radiographers !!
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SadiesServant, Lousy news of new areas, but glad radiation is in the works (and that it’s been so helpful with other areas). Hoping the pain will ease up soon with the rads.
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Thanks all. I appreciate your support. I must admit, I’m getting a bit more nervous now that the relief of having a cause has settled. It’s such a touchy location to radiate. Bit worried about potential complications. Not sure how they will do planning as regular CT doesn’t show the lesion in the BP. May be my first PET. Lots to discuss with my RO tomorrow!
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Sadiesservant- So sorry to hear of your progression and how long it took to get to the root of the problem. Hopefully, the RO will be able to put your mind more at ease tomorrow.
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Dear Sadiesservant, uhh, are these lymph nodes in brachial plexus or something else to be exact? When you mean radiation and machine, you mean some SBRT, like CyberKnife? Your signature shows you are the champion of local radiation therapy, and I always wanted to ask if it was SBRT? Please keep us posted. I am so happy there are options, and most probably you'll need no therapy change, which is a relief.
Dear RK2020, if it is liver, definitely MRI is the best. Again, I am a big fan of ultrasound. Quick - both procedure and results, also cheap and very reliable in good hands. I'd say not worse than MRI if tracked by same radiologist.
Dear BAP, how are you? You said you are waiting for liver/spine MRI, when is it coming? I was thinking... maybe your liver needs some hepatoprotectors, like milk-thistle or cordyceps, or just a few simple ringer infusions to make it easier for the liver? I believe it is not a progression, just some issues with that pseudo-fibrosis and maybe less help for the liver because of GB stones. As Bev said, maybe you need to see a hepatologist, or best ask your MO to consult a hepatologist (this is the trick we sometimes use at our NCI), as they meet daily in hospital corridors anyway?
Saulius
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Sadiesservant - Good luck at the RO. Keep us updated on what you find out.
Thanks for all the responses on scanning experiences. My first reaction was anger at my insurance company because I don’t want my medical decisions made on cost. I want them made on good science. That being said, I’ve now done some reading and am feeling better about changing technologies. My biggest gripe is that up until last fall, I’ve had variables with each scan because I was bopping between an MO in Wisconsin and one at Moffitt. I’m finally settled at a new local oncologist in Naples and we were both looking forward to consistency. She even mentioned at my last visit that for consistency sake, she didn’t want to even change to a different local scanning facility. BUT because at times I have a lot of inflammation in the area of my femur rod screws, a PET made it difficult on some scans to determine what was cancer and what was inflammation. So a bone scan may be helpful in that area. 👍 Although I have yet to discuss this with my MO, I think I’m good with the change as long as we get an abdomen MRI if we think it’s necessary. And that shouldn’t be an issue. Now I’m just hoping that the CT contrast will be injected rather then drank.
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