How are people with liver mets doing?
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I sure am glad JFL an S3K6 are answering some of your concerns. From my own personal experience, I automatically don't like any MO who does not like his patients to read their reports. I put up with one like that for two years and recently fired her. My new one treats me with the respect I deserve. So, I am biased about that.
What is the name of your Cancer Center? It sounds like a big one, but if it's not too inconvenient make an appointment with a bigger one. They might say the same thing, which would give you peace of mind. It sounds like he's done genomic testing or is in the process because he mentioned PDL1. It does take awhile to get those reports back but they can help match her to a more effective treatment.
Since my reports never used the words diffuse and cirrhotic, I don't know much on that. It also could not hurt to get an appointment with an Interventional Radiologist. They have several procedures that can be done for liver mets. She may not be a candidate for any of them. But, it can't hurt to ask. Research y90, chemoemoemboization, etc. I had radioembolization using SIR Spheres y90..
I am anxiously awaiting my first PET since starting X. I just finished my fourth cycle. I hope it works as well as yours did JFL. We call the waiting for results Scanxiety, a made up word that describes my state of mind right now.
How is your wife feeling? I keep forgetting to ask. You said she is young. I had trouble with some X side effects at first but they went away.💞
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Thanks Grannax. She is not doing too bad, other than some mild side effects from the X, mouth sores only so far, but only took the meds 1 week now off this week. Shes having trouble with lower abdominal pain , which is possibly related to menstrual issues, but can't tell so much because all the meds and previous treatment for er+ has messed that up. She is only 37 years old, and DXed stage IIIc, BRCA 2 at 33. I know how the waiting game plays mind games with you, its very stressful and thats just me, can't imagine what thoughts go around in your head since you have the burden of this terrible disease. I unfortunately know all to well about this as my Mom went through it too, but has luckily been 19 years NED. I do wish you the best on your upcoming scans and appreciate you taking the time to give me some feedback .
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You two have been through so much at such a young age. BRACA is a huge challenge, changing receptor studies to Triple Negative is another challenge. I hope the X will be effective for both of us. 💞
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LisaMarie, your wife was diagnosed at a similar age as me. I was 30 at Stage 2 dx and 38 at Stage 4. I do agree with Grannax about an MO asking patients not to read scans. To me, that spells strange control issue / lack of respect for a patient's intellect / ego and insecurity about being questioned by patients. However, I am the type that wants to know and understand everything and do not trust that someone will mention to me everything the scan says. Not everyone is that way and to each his/her own. For the first 6 months or so of diagnosis, I thought I had 3-4 small liver spots. After reading my first PET scan many months later, it turns out my liver was filled with mets, diffuse plus some very large individual lesions. My MO has never mentioned spinal fractures to me but I have discovered over the years that I have at least 4 stable fractured vertebrae that have been around for a long time, likely since diagnosis. Every so often a scan will mention a fracture or deformity - that it remains unchanged from prior scans. My initial scan or subsequent scans never said anything about a new fracture being present. All references are casually thrown in as a side note to the main issues about something that remains unchanged. Different radiologists interpret scans differently and spend varying levels of time writing up the report. It is somewhat of a crap shoot but still helpful to review it. No MO will consistently spend the time we or our family members spend reviewing the scan report in detail. MOs often have only a minute or two to flip through it before seeing a patient.
With respect to timing of scans, it is a catch 22. Typically the thought from my MO is that one must wait at least 3 months to see whether a treatment is working. However, when an MO starts to get nervous due to bloodwork and tumor marker results or a history of a few treatment failures in a row, they get more antsy. Some treatments do take some time to kick into gear and sometimes tumors may flare before the an effective treatment begins to work and look worse on scans. My MO has scanned me sooner on a few occasions and I always wonder whether I gave the treatment enough time to work in those cases and we both are left not knowing whether I truly failed a treatment. It is a balancing act and we all just try to do our best to make the best decisions with the varying levels of incomplete information we have at the time.
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LisaMarie,
My wife was diagnosed stage IV de novo being 33 years old. We fight already for two years, we have a wonderful 4 year old boy, who was 2 at time of diagnosis. Past two years have been very difficult, as for a young family our future was stolen. One thing is for certain and was already mentioned: if in doubt or things get rough, get another opinion, maybe even several. Where one MO sees darkness, another can see a possibility whatever reasons he has. It is also very helpful, as I noticed, to go with her (you, a friend, relative, someone who is capable to stand for her). Not to control, not to fight, just to listen and if there are questions or they arise, to ask them. Four eyes and ears, two gut feelings are better than one. I always go with her, well prepared, and in several cases it has made a huge difference. This disease is crazy, but with right decisions it is treatable, and so many wonderful women on this forum is a great example. You guys can do it, have never doubt about that. Sincerely,
Saulius
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JFL...seriously...your scan showed mets everywhere in your liver and they told you that you only had 3??? Did you call them out on that? Did you leave that MO??
Wow that's scary. When I had my MRI and sat with the Radiologist he showed me on the screen each one. We originally from the CT thought there was 2, but after the MRI they saw a tiny tiny other one that he said the CT probably didn't pick up...but I mean he actually sat an pointed them out. My Radiologist that did my biopsy also showed me them on the scan.
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So after a visit back to the Onc for severe lower stomach pain and the discoloured eyes they did confirm the eyes had some yellowing but not to concerned and not sure about the stomach pain. They ran another blood test .After 2 days my wife missed the call today and the message stated her liver function tests are elevated higher than a month ago and want to stop the xeloda after only 2 weeks. Anyone have any info regarding this issue. I will update the numbers when we get them back or a call of what they say.
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I am sorry to hear this news.
I don’t have a similar experience. I am hoping that they want to stop the medication in order for her liver to have time to recover with less demand rather than they think Xeloda is not working.l and tumors are getting worse. Thinking of you.
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Well Im sick
I guess my Neutrophil number being at 800 and now at 1000 > (which I thought the 1000 was good I was cheering about that Wednesday) is still low and I am sick. I have what I believe is an upper respiratory infection. I have had them more than a few times over my 50 years so I am not usually wrong..they called in Levaquin strong dose too 750mg 1 x day. I am praying this just clears up and I get better ...I am cross posting in the Ibrance thread because I think some others have said they had a cough with Ibrance?? I am having a little flem sounding cough and a tiny heaviness in chest nothing major. I have to admit though...when the on call doctor called me back he mentioned how now when my WBC is low like it is that a little thing can turn into a big thing so now I'm scared.
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Nicole. I had almost constant sinus infections on IL. Now that I'm on X I have had none. Others say the same thing. Who knows why but I does have SE of sinus infection and upper respiratory infection. Mucinex every day helped me.
Lisa. I agree, I think they think X is causing harm to your wife's liver function. It makes sense to take her off to see if the numbers get better. No I did not have that happen with X although my alk phos did go to high normal since I've been on X and it had never done that before.
As to what's next, I don't know. I would think they would do a scan first before they charge TX. And there's always y90 to explore.💞
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Should I still be getting a period or spotting after 4 doses of Lupron, 3 months of Letrozole? I am spotting now today or light period??
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So a quick update, and hopefully some of you knowledgeable Ladies can weigh in. Her bilirubin level went from 1.6 a month ago to 3.4 , hence the slight yellowing of her eyes. Now this was after 1 week on and 1 week off of the xeloda. Could the X have caused this jump or would it be more cancer related at this point? In any case that seems to be a big jump in such a short time and I am very worried this are getting out of control quite quickly. Her Onc wants to stop the X and put her on Carb/Gemzar now. Waiting to hear directly from him later today on these new findings.
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Since this is one of my main threads, I wanted to post an update. I will have a "procedure" this week for a partially blocked bile duct. The blockage is likely cancer, but we won't know what kind until the pathology report. My onc said that my liver looks good on this week’s scan, and I don’t feel that the liver mets are progressing. But maybe a new one has popped up in the liver’s doorway. The scariest thing is that if it is not a weird ILC met, it could be primary bile duct cancer, which typically has a bad prognosis. That is a rare cancer, but my risk is higher than average because of a genetic mutation. So here I am hoping for bc progression! That is statistically more likely, I think. I am fairly calm, sad to see my family so worried, grateful to my onc and nurse for moving things along quickly for me. I am yellowish and very itchy from the elevated bilirubin. And more tired than usual. I started a thread call "Bile duct stricture could be ILC met" to see if anyone else had a similar issue, and have received some kind words which are much appreciated, but so far have not heard from anybody who had this happen.
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LisaMarie, the onc’s plan seems logical because by going on gem/carbo, which I have read is not so hard on the liver, you can see if it was the Xeloda without going off treatment altogether. Drugs can indeed cause a rise in bilirubin. I share your concern about not wanting liver mets or liver function to get away from us. Just keep the appointments moving without delays in between. My own bilirubin due to the blockage is 5.6. I’m still functioning but the itching is driving me crazy.
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Shetland your update has greatly saddened me...I'm so sorry you're experiencing this setback after so many years of being NED. I too hope it's only progression and nothing else. Good luck with your procedure. Please keep us updated.
My heart and prayers go out to you this evening....big hug
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Hoping things go as well as possible ShetlandPony! Keeping you in my thoughts & please keep us updated.
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Shetland, I'm sad to hear your news, but glad they are jumping on it right away. Hoping for the best possible outcome. Peace to you and your family.
Hugs, Katty
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Shetland!!!! You are our rock star! This can't be happening to you!
My husband had pancreatic cancer. His first and only symptom was itching and a little rash. I about never got him to go to the doc. When he did, his numbers were crazy. They put in a stent and it helped right away. After that he had the Whipple surgery, and chemo etc for 3 good years.
I'm hoping the stent will help for a long time whichever cancer it is. , 💞
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Shetland, I'm so very sorry about the scary spot in your liver. You're doing an excellent job of advocating for yourself and moving things along quickly! I'll be praying for an excellent outcome from your procedure!! I recently had a tumor surgically resected from my liver. After your procedure, I recommend aggressive hydrating and taking stool softeners to avoid constipation. I did not stay on top of constipation which I believe put pressure on my liver... ouch!
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Shetland, I am very sorry to hear about your current status as the unknown and the waiting for the upcoming answers to it is very scary. The same is true for my wife right now as we wait for the MO appt on Monday to see what her bili number is after being off the X. We are hoping for an improvement because both of us are fearful that her liver is heading into failure much sooner than the Onc had anticipated. If this is true then her treatment options going forward will be very limited and the Gem/ carbo could be her only hope to turn things around. She was only DX 10 months ago with stage IV to the liver and was told it's not that bad yet. Lynparza worked well up until 2 months ago when she started experiencing symptoms again and now things seem to be spiralling fast, it seems all so sudden. Hopefully I'm just overreacting, but I haven't seen anything good with rising bili numbers and liver mets. We are both terrified. I keep all of you in my prayers as you all are so strong and courageous , no one should ever have to go through this awful roller coaster of a disease and emotion.
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Shetland, I am sorry you have to deal with this setback. You have had such a great run on Xeloda. Ah, the twists and turns of metastatic BC . . . where one hopes that one is progressing . . . only here would you find that and similar hopes. It is all relative with in our microcosm. I hope it is in fact a mini liver progression, if that would be the best scenario. Liver mets is definitely the more statistically likely reason. Is there any possibility it could be something with your gallbladder? I think the stent will bring you immediate relief.
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Hello to all. I don’t post often but I have been following this thread for the past two years and I just want to say Thank You to all who share here. JFL, Grannax, Leftfoot, Shetland, and so many others have been here when I was looking for hope, had questions, and needed support. You ladies and gentlemen are Amazing!
To share a bit of my story, I was diagnosed with MBC de novo at age 43. I have Mets to the liver, and when I say Mets, I mean a huge 11cm lesion/tumor along with 3 smaller lesions less than 2cm. I’ve been on Ibrance for 20 months but have experienced recent progression in my liver so I’m on to Faslodex. I hate needles! I did three rounds of IV chemo before Ibrance, but had to stop due to increased ALT.
I live in So California and try to spend my time between my 9 year old daughter, husband, and Disneyland! I medically retired from my job and currently receive SSDI. I’m sending you all smiles and hugs and a big Thank You
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KC54321 Welcome but I wish you didn't have to be here.
This crazy disease is so unpredictable, keeps us in roller coaster mode all the time. 11cm that is big. What shocking news. The TX did work, did it get you to NED before at this progression? Wishing the best for you. 💞
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Thank you for the kind words, my friends. I knew I could turn to you guys. Exactly, JFL, it’s all relative. Cancerland has its own rules, not the same as in the ordinary cosmos. They do expect the draining and stent to relieve my itching. Listen: If God had included jaundice itching in the plagues of Egypt, He would not have needed to proceed through ten plagues. I look like someone beat me because I am covered with bruises from scratching/rubbing. Thanks for the reminder to watch out for constipation after anesthesia, Theresa. Gall bladder looks fine on ultrasound and CT. There is something at the junction of the right and left bile duct in the liver. There is also a new lesion in another place. But the rest of the liver looks great, all those mets now tiny and unremarkable — gone, asleep, or dead. So what the heck? I just found out my nurse had them run CEA and it was normal; it is usually elevated in Gastro cancers, so there is a bit of hope.
LisaMarie, hoping for falling bili levels. Can you tell anything by looking at her color and her symptoms? Did they do an ultrasound?
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Shetland, her eyes are discoloured but her complexion looks ok . Her symptoms with both liver DX were a lot of burping , getting full quick when eating, indigestion and acid reflux and mild pain under her rib when yawning or breathing deep. Her Onc likes the MRI . It's just crazy when we found out of her progression a month ago, her bili level was 1.6. Mo wanted a week off of lynparza before starting Xeloda then on her week off I noticed her eyes not looking good. Recent blood showed bili at 3.4 so he pulled the X. Now waiting for the Gem/ carb. Hopefully it gets things back in line.
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Grannax- At the time of diagnosis in 2017, I had 2 liver lesions, one 2cm and one 10cm. The chemo didn't make a dent in either. I've never been NED, just stable for 20 months on Ibrance. The large mass grew to 11cm and I now have two more lesions in my liver that are approximately 1.5cm. It really sucks that any of us have to be here but I'm so thankful for this site and all of you!
Kc
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Lisa The onc likes the MRI? I'm wondering what that means. Does it mean that the mets are stable, or did they grow but not too much? Either way I'm hoping the gem/carb works
Kc. It does help to know that others understand our existing. But, I'm really hating being MBC this morning. No good attitude for me so far. I'm doing the worst part of prep for PET.....no coffee. Grrrr
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Shetland, take Magnesium OXIDE - NOT citrate to help you go to bathroom it works amazing and is totally safe. I take 3 pills and go very easily, I get severe constipation from anesthesia and from any type of pain killers. I did my BMX with no pain killers because constipation is so bad to me.
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Sorry Grannax, Shetland asked if he did an ultrasound. My response should have said ; he likes to use the MRI for her liver over ultrasound and CT.
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LisamarieP, my doctor likes MRI for my liver too. Better for soft tissues, organs. CT for bones. Just had CT to check mets to bones, everything stable including liver which is riddled with diffuse Mets. MO doesn’t trust it though-LFT are up as is my tumor marker from 641 to 1,186 in two weeks. LFT and TM always more reliable than scans for some reason for me. Just started cisplatin today. I should look for a cisplatin thread.
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