How are people with liver mets doing?
Comments
-
Gumdoctor, I'm thinking of you and hoping you have supportive friends and family to encircle you with emotional and physical support and love while you are having such a hard time.
Katty
0 -
Nbnotes. Thank you for the update. Part of me wished you were traveling!
0 -
gumdoctor. I was shocked by your news. Speechless, actually. No words to say except that my heart is with you. 💞
0 -
Thank you so much Grannax and All -
Here is a link to a case report describing what my biopsy showed - Occult carcinomatosis. This is supposedly rare so not much is known about it. With a few tweaks to the labs and history, this case study could be me.
Right side liver shows "normal mets" which can easily be seen and measured. Left side liver is full of this occult carcinomatosis.
I found this article last night when I couldn't sleep...While I know better than to give much credence to statistics, this is a very current article and indicates prognosis with this dx is 6 mos...
Gumdoctor
0 -
I struggle to find the right words but did not want to leave without responding. I am sure you will prepare for the worst and hope for the best ( note that patient declined chemo , where all of us would have been without it .... so may not be an accurate illustration ) but on emotional level I struggle to even begin imagining how you feel now. Hugs. Hope you have some psychological help and manage to regroup , hugs again.
0 -
Anotherone -
Oh thank you so much for your kindness. The prognosis is not just for this patient. She probably lasted less than 6 mos.
It might have been in another article I read in the middle of the night...can't remember. So little is known because there are few documented published cases in the lit.
I do have good support from husband. But he heard the same thing I heard yesterday and chooses to move on with the tasks of the day. He is an engineer so does not understand the medicl lingo. He uncomfortably talks and listens to me so I don't push him much.
I did have to ask him about our grave locations so that's now done. I had to ask him if he wants a service where we live. We will be buried 5 hours away so there are details to work out ahead of time. If I ask at the right time, he will engage with these questions.
I do have 1 supportive sister 4 hrs away.
I have had lots of therapy in the past and when I remember to use my extensive coping skillset, I am fine. I also have been very blessed with a protective numb mode when I need it. I can look at things clinically because I have been in patient care more than 31 years. I cannot necessarily turn it on and off but that's where I am right now. Numb (not dumb
) clinician learning about this condition...Again thank you caring and getting it,
Gumdoctor
0 -
Gumdoctor,
Like Grannax, I am in shock here. I just read the article that you linked, and something did come to mind but, of course, I don't want to press you to do anything that you don't want.
One of the article's authors is at the U of Virginia (Patrick Dillon) and he's co-authored several pieces dealing with the liver and metastasis. If you have the energy, perhaps you could either reach out yourself to this person or else have your doc do so for you to see if there is any other information that he might have that could prove helpful in your case. (Of course, you could contact any of the authors, but he's designated as the contact person and I had the sense that you were on the East Coast, so thought he might be the one to contact.)
And, as someone else said, the person in the article declined any chemo.
Good luck in figuring out your best path.
Bev
0 -
Gum doctor, I’m very sorry to hear this. Does your MO communicate this type of prognosis also? You seem very matter of fact about getting things done to prepare for when you’re gone. That makes it so much easier for others, you’re doing a good thing for your family and yourself. My mom communicated her very specific burial wishes (at sea, Cape Cod) and we followed them faithfully but wished she was there to share in it, of course. I still have hope for you but we all know our time here will be shorter than we’d like. Hugs to you. Please keep in touch here.
Rosie
0 -
Gumdoctor- As Rosie asked, what does your MO say about this diagnosis? You are trying Havelen next, right? I have not done the research you have on this. Other treatments for this? I am so sorry.
0 -
PET SCAN AND MRI OF ABDOMEN DONE.....
Liver numbers improving to ALT from 260 to 103 and AST normal now at 34
Bilirubin down from 2.0 to 1.9
MO wants me to still stay off Xeloda and supplements until blood work Friday and results of scans...please pray Stable or stuff shrunk!!! I need all your prayers!
0 -
Nicole- Prayers for Friday.
0 -
Nicolerod, happy to see your labs improving. Now to send you positive thoughts for scan results.
Gumdoctor, is it possible while starting on Halaven, for your MO to contact the UVA authors in your posted article to help find specialists in this type of liver mets (occult carcinamatous) and maybe suggest treatment options?
0 -
Gumdoctor, so sorry to hear about this latest diagnosis, which certainly is uncommon. I hope you can get more information about this presentation and get information on what is recommended for treatment. It is hard not to hang on to statistics when thrown in our faces but they are not always correct. We are all different and in different circumstances, but 5 years ago, I had uncontrollable, life threatening hypercalcemia attributable to "late stage", widespread, metastatic disease which required hospitalization. No breast cancer drugs available to me at the time were working so all that could be done was to try to dilute my calcium levels by pumping me with large amounts of saline water on a continuous drip for several weeks to try to avoid me slipping into a coma. I literally felt like I was dying, my whole body hurt so badly, and I was worried I wouldn't make it a few more weeks. I think the stats were that by the 1-month point after the first "episode" with severe hypercalcemia, only 50% survived and by 3 months, only 25% or something along those lines. Well, here I am, somehow, over 5 years later. I think that you are right in that there is not much data on occult carcinomatis and no one really knows the true prognosis. I imagine it is underreported in addition to being rare. You are very good at compartmentalizing. I can relate. I am glad you have a supportive sister. Hard to navigate all the planning logistics and figuring out how to have productive conversations with loved ones about these subjects, especially when loved ones may not be great at facing this kind of stuff head on. It is good you are doing the planning though. Sometimes it feels therapeutic to take control of the things over which we actually have control, which can feel like so little much of the time.
Nicole, glad to hear your blood work is normalizing. It sounds like it must be one of the drugs you are taking (or some combo), as you suspected. I changed one of my mushroom extracts to a different formulation by mistake (ordered standard maitake d-fraction extract instead of the pro-4x (concentrated) version indicated for BC) and my liver enzymes skyrocketed to scary levels overnight based on the equivalent dose I took of the standard version. Good luck on your upcoming scan.
0 -
Thank you Sandi, Candi and JFL! JFL...I am kind of praying MO is right and it was the Mebedazole...I don't mind leaving it out...I just really want to get back on the MSM and LDN!!>>> One of those (or both) were helping tremendously with my inflammation...like more than anything and I just want to get back on ...I promised her I would stay off everything until Friday and I am keeping my word...but after Friday I am gonna add the LDN back in first...wait a month if all good then add the MSM back in. I have thought from the beginning and still do that my cancer is primarily liking to feed from the inflammation pathways....so I need those.
Just praying that the Xeloda...at the very least, as kept anything new from forming.
Thank you all for being with me...means more than you could ever know!!!
0 -
Nicole. That's a rapid response to being off X and supplements. I'm so impressed with your MO. Hopefully, in time, she'll let you get back on the one for inflammation.
JFL You are a walking miracle.
Gumdoctor. I can't tell you how much I wish we could just be dealing with a normal cancer. I've never heard of the type you have in your left lobe. I wish rare wouldn't happen to any of us. I thought you had been on Halavan?
I can't tell you how sad I am that y90 is out. Although, I'm glad they did the BX because now they know y90 wouldn't have done much to help you. I'm not medical, as you know, just self educated. I think being smart and facing reality is the best combination. That's who you are, God gave you the gifts to become a doctor and have successful career. I believe being numb, denial is a good way to cope for a few days now and then. It won't last but useful sometimes.
Most of us have made plans. It's just the right thing to do, it helps our families when the time comes. My husband didn't want to talk about it either but he did. It helped us not have to deal with everything when he died. I cannot believe it's been almost 10 years ago that Pancreatic cancer took him.
Hoping that all of us can keep on keeping on. Taking steps to do first things first. 💞
0 -
Hello,
I do not post often here, but I do read it.
Gumdoctor-what a gut punch. You have been dealt a rotten hand. I have you in my thoughts and wish you a smoother path forward. I read the article that you provided the link for. What a @#$%^&* aspect of breast cancer. Damn it all and send it to the bowels of Hell.
Heartfelt thoughts, may the force be with you,
Mary Jane
0 -
I'm on Xeloda and Taxotere now for liver mets.
I progressed on Afinitor but curious if anyone developed a cough on it. I can't seem to find the Afinitor thread anymore to ask.
X
0 -
Leee, Afinitor is notorious for lung issues. I recall others had coughing (that continued after the drug was stopped) or other lung issues when I was on it. Grannax, does my memory serve me right that you had lung issues pretty quickly on Afinitor
0 -
Afinitor almost killed me JFL and Leee. Although most of my SE were uncontrollable weight loss, diabetes going nuts, lipids going nuts and NO energy. Best weight loss program, ever. I know lung problems are common but I don't remember having a cough. I have lung mets anyway, I remember being worried about the lung SE.
All that and it didn't phase my mets. UGH Now I know that A Is don't work on me because of ESR1. My MO back then , fired her, didn't give any consideration to my genomic testing. Graft
Leer I've never heard of X and Taxotere together. What a combo! Surely your liver mets will respond to this TX, I sure hope so.💞
0 -
Just thinking of Zarovka today, the 1st anniversary of her passng.
She taught me so much when I joined BCO as a liver metser. She was good at starting many interesting threads, responding to PMs and keeping us informed on her cancer treatment journey.
I really thought she would be here years and years.
Miss you.
0 -
SandiBeach,
And therein lies the mystery of this disease. From what I've read, she was one of the most educated people on this forum about this awful disease. How is it that she couldn't manage to get through it and eek out a few more years? Very sad.
0 -
Yes, I miss Zarovka. She was so helpful, hopeful, and inspiring, and it was such a shock to hear of her passing.
0 -
she was an an amazing person. Thanks for remembering her today.
0 -
Zarovka was a compassionate, extremely intelligent, and adventurous woman.
She went all the way to Japan to work with the best Immunetheraphy doctors, unfortunately to no avail.RIP Katharine! You will not be forgotten!
0 -
I had progression to my liver show up this past November. Since then I have had piqray/faslodex for 2 months. It didn’t work. I’m now on gemzar/carbo. I’ve had 2 treatments so far and I am really struggling with ascites and fatigue. My liver enzymes and bilirubin are still high but yesterday’s blood work showed it’s still same as a couple weeks ago. I’m starting to get really scared that I am going downhill fast. I just wanted to find some comfort here. Thank you
0 -
Apg, have you talked to your Oncologist about treating the ascites? I know that when my wife had it, they prescribed diuretics and blood thinners to prevent further clotting. She had it drained several times, then we had a line installed so we could drain it at home. Eventually the xeloda worked and her liver healed, and the ascites went away. That was over two years ago.
0 -
Apg,
Another thought: have you tried any local liver treatment? Microwave ablation, cryoablation, y90? There is another thread about different kinds of liver treatment that you might want to consult. I'm a fan.
0 -
Gumdoctor, this is terrible. And so unfair, starting with your criminally delayed diagnosis to this latest biopsy report. It does sound very serious. Yet where there is life there is hope. I’m not giving up on you, but hoping something will turn things around for you.
0 -
Ok so there is a lot going on in this thread today so don't feel obligated to reply to me.....However...I am in real need of opinions here...so I am going to hope some of you reply and I will cross post also.
Well there is good news and bad news on my scans.....
The good news is that my of my 2 bone mets...the one in the hip isn't even visible...and the one in the sacrum is has shrunk on Xeloda.
now the bad....
My liver supposedly had 3 tumors but 2 of them had been cryoblated in end of Oct 2019. They were cryoblated under 1 dome (together).... well today the PET and MRI showed that it looks like I have 2 or possible 3 tumors...here goes....Please try to follow me here its gonna get confusing..
A. The (2 they cryoblated) looks to be gone the PET shows minimal if any uptake but the MRI shows it bigger, but they admitted they are not familiar at my facility with Cryoblated tumors and are not sure if this is actually dead and smaller so we have to wait for the IR from Hopkins that did it to look at it...my husband believes its a non issue because they said the same things about it when I had a CT scan 2 weeks after the cryo and it turned out when the IR at hopkins reviewed it he said it's all good and dead end. of. story. So hopefully its still like that.
B. That left 1 tumor...the one they couldn't get with cryo bc it was too close to the colon wall...that looks bigger..but we don't know if that is because it grew in the 2 months I was off all meds before I started the Xeloda which would actually mean it is stable.
C. There is a new tumor near the one they couldn't cryoblate...but again..we do not know if that was there during that 2 month period I wasn't on any meds before starting the Xeloda..and there is a good chance it was because when I consulted for the Cryo the PET I had (from a different facility) said I had 4 tumors in liver....that the 4th one was new from Ibrance failing...yet the IR said NO..there are only 3... HRMMMM now they are seeing a 4th??? ughh so we are unsure again...if this was there or is actually new ....
So we sent the MRI to the IR to speak to my MO directly and tell us what he thinks about the cryoblated area.
In the meantime we are going to do Xeloda for 6 more weeks and scan on week 7.
If I am stable we stick with it. If I have progression we are going to move on to either...:
Paxitaxil> spelling....
or
Doxil (which I asked about bc I heard its easier on the body than the taxmen) My MO is open to both but would prefer starting with the Taxane..because she wants to hit this hard to set it back then is open to Doxil.
We are also looking into a immunotherapy trial.... but right now it's looking like I will have to choose between the 2 chemos and I want your opinions... and before you ask yes I will find out about more cryo but the location is right by the tumor that is by the colon wall which they couldn't cryo.....
PS: liver numbers back to normal...able to resume LDN and rest of meds will leave out mebedazole.
0 -
Z totally rocked.....she is sorely missed
0
