How are people with liver mets doing?
Comments
-
Oh no aurora....sending healing prayers your way. Keep up the faith and believe a Christmas gift of effective meds will come your way.
My word Shetland, 3 incidents at once.....Life can be one big trial that's for sure.
0 -
Aurora I'm so sorry about this this disease is so unfair. You are a very strong woman you will get the next meds and kick cancers ass. Big 🤗
Wend
0 -
My liver started hurting a few nights back after I had a full day of shoulder pain that I woke up with, shoulder pain was harsh and sharp, got worse and worse. Felt like the pain from when two lymph node masses in supraclavical had grown together and pushed on nerves, thought that was it. But by 11pm, liver area started and by 2 am had taken me out of bed from trying to turn over to r side and then doubled me over and could barely stand to walk, could not recline on either side. On way to ER that morning the palliative nurse got me in instead, morphine liquid child's dose. But the pain had eased enough I won't take any until it comes again in the liver - makes another episode. Still hurts when I cough, sneeze, burp, but good sitting, walking, sleeping. Am hoping rest and no friction will stop pain completely, no more episodes. Brushing my dog is waiting until tomorrow and left-handed, grandaughter can help me. Hubby will do a little tonight. Danny Boy is a big Newfie and very furry. He has to be ready for guests, grin
QUESTION - Is it true that liver lesions will not hurt except for these reasons.
- If the lesions breaks or eats through the liver skin or capsule?
- If the lesion is large enough to cause pressure on nerves or rib area and nerves?
- If the lesion is growing and gnawing, there can be pain but not always?
- If the lesion has dying cancer cells from treatments then there can be dying off pain?
QUESTION - What has been your connection between shoulder pain and liver pain, if any.
Thank you for the consult, dear friends.
Wishing holidays are nice in the way you need them to be this year, whatever each situation.
0 -
Thank you for your prayers and thoughts. Dissinez is now controlled with steroids but cancer has definitely entered the brain so I’ll be getting a high dose treatment next week. In the meantime I’m out of the hospital to celebrate what could be the last Christmas Eve with the family. Whatever the lord decides.
Aurora
0 -
Aurora (and others with new brain mets)- Do keep in mind that Abemaciclib can cross blood-brain barrier and work on brain mets, perhaps your MO can add that to your treatment regimen?...
0 -
Bluebird - I have developed weird pain in my right shoulder and I do have active liver mets. I am not sure there is a relationship but I've read that there can be a connection. I am so sorry to read that you are in pain.
Aurora - do ask your docs to consider abemaciclib. Our thoughts are with you and your family.
>Z<
0 -
Lynne - thank you for passing on the message.
Aurora you are in my thoughts and prayers and I hope you have a wonderful X-mas with your family.
0 -
Bluebird. I had pain like you are describing after my y90. Very sharp in my right shoulder and it hurt to take a deep breath. My doc told me it was referred pain from the liver. I know it was right after the first procedure, that was my my left lobe. I don't know the location of each tumor. After my next procedure, to the right lobe, I don't remember having it.
Aurora. I'm so glad you get to be home for Christmas. It seems there are new treatments for brain mets, now. I hope your MO is open to trying that TX.
0 -
Aurora, I am glad that you will be home with your family for Christmas. Enjoy the day. You have probably already read some of the Brain Mets thread, so you know that some people do see marked improvement after treatment. I hope that you have that experience, too. In the meantime, I am glad to hear that the dizziness is under control and that the treatment for the brain mets will begin soon. You remain in my prayers.
Hugs and prayers from, Lynne
0 -
Aurora- so glad you'll be spending Chairmans with your family. Please enjoy every moment !
Babs
0 -
Aurora so glad you got to go home and be with your family, enjoy Christmas with your family.
I went back and read all your amazing posts. I sure try to understand the talk, but it's really deep.
Bluebird it's crazy the pain and the alienation you have to go through. Happens to be that Dani also had enormous pain in the blade area after Y90 and Grannax interesting to note that you also had that. Although no doctor put it together.
Babs thanks so much for passing the message about Dani.
How do I make this short. The week after the most horrible experience of being ignored at the Hospital, was a difficult week. Dani had rads that week so the trips there and the weakness from going through what she went through and then having Y90 at the end of the week, then more rads was just monumental. All that week I was hoping to speak to chief URO so we could see another Uro, anyway he granted my hubby and I a visit on that Friday afternoon.
We were ushered in to what was a consult room with that chair for examination etc... not an office. In that room in came the nurse, the resident that treated Dani at the hospital, a social worker, and someone else i don't remember and of course the chief. He is well known as good in his field. The first thing he tells us, is - do you know what your daughter wishes are? does she have a living will? do you understand how sick she is? did a/o tell you? (Bluebird almost word p/word of what was told to you). We were flabbergasted. He said i don't understand these docs, they treat the liver, separately every part of the person, they should look at the picture and sometimes you don't treat. He will discuss it with Onco. Maybe it would be a good idea to speak with an ethicist? A chaplain? I told him, but she's doing her chores, she functions, she is not running around, but how do we just give up on someone that is doing everyday stuff, i said she's just 30 something, u guys brace yourself! He says we just lost a 5yr old. Kid you not. If i didn't have a heart attack then...He said we have ppl doing irrigation 6 weeks. Irrigation would mean a cathether in the uretra, and water coming in and blood going out, very uncomfortable, because obviously there is clotting involved then they would have to flush, don't ask. I said 6 weeks? But hse has children, that's her life, that would not be living, he smiled, some ppl go from this and that some ppl from bleeding. We were speechless, i knew these people were garbage, and there is not talking to them. When we left the room a saw a policeman waiting in the lobby, no one was there anymore friday afternoon, and he accompanied us and the social worker to the elevator. I asked her in the elevator, is he here for us? and she said oh no they roam the elevators. And they smiled to each other and he left on the 2nd floor. They thought we are gonna be violent becausee i had said i wanted to complain. Do you believe that? That's at Columbia Presbyterian in NY.
We were very broken and shaken, by the Grace of God i thought of one Onco i know, that is very old fashioned, not the fanciest person in town, but i knew that he would fight for her. And after 2 weeks of going back and forth and paperwork, he is trying to come up with something to help her. She did use a URO he recommended because the bleeding is still there. On and off. Like a hanging noose. They did vessel embolization, not an easy procedure. It helped somewhat, but any day any time, she will call me she just passed clots, mind you that's from the urethra.you could imagine what she's going through, she has to drink all the time, so sleeping is not really getting done, she's constantly scared there will be huge clots again, and then she won't be able to pass. URO is still trying to figure out what to do. It's been difficult. She is off tx. Neratinib proved to be a cause of major nose bleeding, and mouth sores and a rash.
I've pretty much became paralyzed, i barely go out, i did not touch the computer till today. Z you were right. I started on Celexa. It helped a bit. Every minute i wait for her call. My hubby kinda broke, he looks lost. It's hard for me not to be able to discuss it with someone that knows her well. So this pressure gets even harder. I am really alone. The sibs know and they help with the kids etc, but i can't tell them of all my fears and every minute i know she's bleeding, they have to work and mingle, it's hard to do that if you are constantly in a crisis mode. Of course the bleeding gets worse at night. The sheer panic of hearing the phone ring Platelets are down to 43. She cannot plan even a doctor's appointment for her dd, she had to cancel twice. I don't know where this is going. She lost so much weight, she tries to eat, but this stress i honestly don't know how she could take it. I do wish and hope for a better tomorrow for all.
Love,
0 -
mom I can hardly believe everything I just read. How could they treat you with absolutely no empathy or compassion? There are no words to explain how wrong I think they were in their attitude toward you and your husband. It's appalling! I am glad you were able to find other docs for Dani.
How you have kept on,in spite of paralyzing emotion, is nothing short of an act of willpower only a mother understands. Thanks for updating us so we can know what struggles you are facing.
I'm praying. 😢
0 -
Oh Mom, my heart breaks for you and Dani! It makes me sick to think of the things that were said and done to you...and by a " prestigious " institution. I am flabbergasted that they would basically give up on a young functioning woman. I am praying that the bleeding stops and the new onc can help you. Your story has shaken me to the core. Please take care of yourself, I'm glad you got some Celexa. You know we are always here to listen and support. Prayers said for all.
0 -
Aurora - we were on Ibrance together, then Abraxane (which I finish next month), then you moved to Gemzar and now reading nightmare of brain mets. So sorry, you deserve a break. I agree with Cure-ious and Z about Abemaciclib which is a mono med that can cross BBB. Please talk to your onc about this treatment and have a restful holiday.
Momatt - no words. It's inhumane - Dani is so strong to go through all this without complaining. Sending you best wishes throughout this ordeal. )0 -
Momall, I am literally in tears from what I just read. You are not alone bc we are all here praying and lifting you up in prayer. I don't understand the coldness and brutal behavior of some of these Dr.s. If you ever want to vent or just talk to someone who is dealing with all this crap, please reach out to me via mail and I will give you my number.
Have a Merry Christmas and enjoy the day with your family!
Hugs,
Robin
0 -
Hi Ladies, it seem like we are all having our issues. I’ve been off the thread for a little while. Had a car accident but all is ok except my new car. That can be fixed. I have been on Xeloda for 8 months. Things have been going good. All liver enzymes were good. Then last month one liver enzyme was raised and my TM started to move up to 43. MO decided a CT with oral contrast and IV contrast. It was the best CT you could ask for. Liver mets disappearing except for a few. Bone mets stable. Next blood work last week showed all liver enzymes back to normal but my TM rose up to 57. DH was in contact with my MO at Dana Farber and he said these values can be fluid. Has anyone else had this issue? My MO where I live retired on the last day I saw him and he thought that I might becoming resistant to Xeloda and the next treatment would be IV chemo. Just wonder why TMs are slowly rising. Any experience with this?
You ladies are all so full of good information and experience I thought I would ask. Have a Happy Holiday the best we all can putting stress and exhaustion aside. Hugs to all.
Anita
0 -
Momall, my heart aches for you, Dani and your family. Prayers for strength, wisdom and compassionate guidance for you all.
Anita, my experience with TM is that it (CEA) has been highly predictive. For my last 3 treatments (Faslodex, Xeloda, and Abraxane) I experienced initial good results for a few 2-3 months, then the TMs started climbing. Sometimes slowly, sometimes dramatic. Eventually the scans showed they were right. I haven’t had a long term drug work since my year on Ibrance.
I’m sure your MO will keep an eye on both blood work and scans. My prayers are with you for finding a drug that will give you help for years.
0 -
Momall. I’m heartbroken for all that u and Dani are going through and for the heartless treatment you’ve received. I hope and pray that things get better!
Babs
0 -
Momallthetime why is compassion and empathy not part of being a doctor. I'm sorry you went through this I can't even imagine such heartless treatment. Isn't this a great hospital? Dani is young and strong she needs someone to see that. Take care of yourself as well and get another opninion. 😊
Anita I'm on the same drug I've done six packets so three cycles. How are your hands and feet? Your MO is probably keeping an eye on your TMs but if your scans are good that's where I'd stay in my mind.
0 -
MomATT - I've started a separate thread for you and I've copied your post there . We can focus the conversation in one place and make things easier for you to communicate with us. Perhaps this will help us console each other because I know the shock is effecting everyone. I have no words, myself. I am just terribly sad.
https://community.breastcancer.org/forum/8/topics/861088?page=1#idx_10
>Z<
0 -
Z - that's a great idea to have a specific thread for Momallthetime and Dani!
Merry Christmas and Happy Holidays to everyone here.
My 78 year old mother fell in the supermarket last Monday and broke her shoulder. According to the doctors it wasn't a bad break and she doesn't need surgery but she is in a lot of pain. Her body does not metabolize narcotics/opioids well. She is what is called a poor responder and the problem is similar to what we go through with cell pathways. So she doesn't get the pain relief but gets all the side effects. She gets loopy, irritable, nauseous and cries about the pain. She keeps asking for more Vicodin. We already watched her go through withdrawal from prescription narcotics after her total knee replacement about 3.5 years ago. It was awful and fortunately she doesn't remember it. She's been off of them since then and was doing pretty well.
So besides telling you my tale of woe, I was wondering if anyone here has had a similar experience with a family member, friend or even yourself where narcotics don't touch the pain but the dependence on them takes hold rapidly. My 82 year old dad and I try to manage it and control how much she takes but she makes it extremely difficult on us. She gets defensive and argumentative. Insists that we want her to be in pain and that we are not on her side. In addition to the Vicodin she takes Ativan and trazadone and other prescription meds for other ailments (diabetes, COPD, fibromyalgia, Barret's esophagus, GERD, etc.). I don't know where to go from here. The orthopedic doctor was useless. Barely gave her the time of day (I wasn't there but my Dad told me) and I don't think he even discussed any of her other prescriptions and the interactions. We've been through the polypharmacy issues when my parents lived in Florida. She was getting prescriptions from any doctor who would write them and they just didn't care. I thought it would be better here in Massachusetts.
I don't know how I can legally discuss these concerns and issues with her PCP who I like and is aware of the affect these drugs have on her. Its amazing how quickly situations like this can get out of control. I'm working full time from home and just started a new clinical trial so my time is limited for research for her and support. But she's my mom and those reasons just don't cut it.
Any suggestions?
0 -
Aurora-holding you close in my heart. I'm betting the Abemociclib could help. Hope you can have some peaceful, pain free rest.
Mom-you are in the very depths of hell and it is so undeserved. May infinite positive energy surround you and Dani and your family. I will post on the new thread that Z so thoughtfully started.
Animalcrackers-what a tough spot to be in with your Mom. My Dad was unable to take narcotics for intractable pain due to degenerative arthritis in his lumbar spine. It was so frustrating. We tried everything to mitigate the pain. TENS unit, injections, nothing helped. He was able to be comfortable in certain positions. ? pain management clinic, placebo, or at 78, let her take a low dose . Such a hard situation, and I am thinking of you so much. You have so much to manage already with the damn MBC.
Love to each, may the force be with you, MJH
0 -
Animal Crackers - I took a pharmacogenomics test (it's a blood test that looks at your genetics and your ability to metabolize drugs). The test tells me what pain killers, and drugs in general, I metabolize properly and which ones I don't. Your doctor can order it, but takes a while and it's not available in the US. You have to pay for it yourself. I'll send you my test results and the name of a lab that does it if you are interested.
I found one over the counter drug I was taking was highly toxic to me. I was dizzy and dehydrated and had headaches. I thought it was the cancer drugs until I stopped taking all the cancer drugs and the symptoms persisted. Stopped taking the indicated drug (loratadine) and the symptoms stopped immediately. Interestingly, the report says that I have multiple mutations that indicated increased efficacy of opioids. I may be less susceptible to opioid addiction, and may require a decreased dose of opioids. That exceptional efficacy of opioids corresponds exactly with my experience. Other pain killers I don't metabolize properly ... and do I vaguely remember having no response to one of them. In any case, I've gotten enough useful information out of the test to feel that I can suggest it is worth to others despite the out of pocket expense. When you are in pain there is no time to mess around with drugs that don't work an make you sicker.
This won't help your mother today because of the research and time involved in getting the test, but it might help going forward know what classes of pain killers she can rely on in the future since you know that some do not work. The test will look at all the drugs she is on if you list them and there may be some issues that you are not aware of with these other drugs and their interactions.
I am very sorry she is in so much pain. I took care of my elderly mother and she was not super cooperative either especially when the pain kicked in. Fortunately she was basically a good mother and I had a great well of love to dip into. Pain does quite a trip on the personality. My heart goes out to you and your dad. You gotta do what you can but there are limits to how much you can help an adult without their cooperation.
Bluebird - I have been studying referred pain from liver mets since you mentioned your shoulder pain. I have unexplained shoulder pain right at my clavicle. It seems it could be caused by liver mets irritating my diaphram.
I want to write up what I am learning since I think this pretty important stuff. I have paraphrased the following from this website.
Referred pain happens when nerve fibers from regions of high sensory input (such as the skin) and nerve fibers from regions of normally low sensory input (such as the internal organs) happen to converge on the same levels of the spinal cord. Your liver, gall bladder, stomach, spleen, lungs, or pericardial sac (the connective tissue bag containing the heart) bump up against the diaphragm, the thin, dome-shaped muscle that moves up and down with every breath. The diaphragm is innervated by two phrenic nerves (left and right), which emerge from spinal cord levels C3, C4, and C5 (medical students remember these spinal cord levels using the mnemonic, "C3, 4, 5 keeps the diaphragm alive"). The phrenic nerves carry both motor and sensory impulses, so they make the diaphragm move and they convey sensation from the diaphragm to the central nervous system.
Most of the time there isn't any sensation to convey from the diaphragm, at least at the conscious level. But if a nearby organ gets sick, it may irritate the diaphragm, and the sensory fibers of one of the phrenic nerves are flooded with pain signals that travel to the spinal cord (at C3-C5). It turns out that C3 and C4 don't just keep the diaphragm alive; neurons at these two spinal cord levels also receive sensation from the shoulders (via the supraclavicular nerves). So when pain neurons at C3 and C4 sound the alarm, the brain assumes (quite reasonably) that the shoulder is to blame.It is important to note that any one of the organs can irritate the diaphram and cause the confusion of signals that drive unexplained shoulder pain. Also this is just one theory of referred pain, the one that made the most sense to me. There are several theories as to the cause, but the phenomenon is widely recognized as A Thing. Finally, if you believe the phrenic nerve theory then an irritated diaphram and the corresponding organ issues can also cause persistent hiccups because the phrenic nerve controls the pace of breathing.
I am not sure what is going on with me. I have had two doctors tell me that my liver feels find and is not enlarged.
>Z<
0 -
AnimalCrackers,
I have the same problem with opiates. How is she with a good dose of ibuprofen, which often works better on bone pain than opiates? Her age and cardiac issues might contraindicate the NSAIDs, but it is worth looking at.
I've been using topical treatments. Alternating ice packs with heating pads provides a lot of relief. I still have to retreat to opiates at night, but it works in the daytime.
When I take the opiates, I make sure that I also take the anti-emetics. Which means I have to take the stool remedies, as they are Very Constipating. Her Ativan might also act as an anti-emetic, without the bowel consequences. And, I make no plans for the first hour after I take them - too loopy and nauseous. But, some pain is worth it. Also, use the extended release drugs, so you only have to go through the SEs every 12 hours.
Luckily, she will heal in time. I had an ACL replacement, and I remember too well counting the moments between pain pills. No cancer pain has even approached that level of pain (yet). Ice packs and ibuprofen kept me sane.
0 -
Z. Thank you so much. When I felt my worse my shoulder was hurting and I was told it was probably gas. I thought it could be liver pain. Guess I was right! I think we know better than all the doctors sometimes!
Babs
0 -
Z...I don't comment much, but thought I should chime in here. When I had my liver biopsy at Mayo clinic in Rochester, MN., the Doc told me to expect shoulder pain....and boy was he right. It felt like someone stabbed me with a knife. Thankfully it was short lived.
0 -
Animal Crackers, I agree that high dose ibuprofen can work better on bone pain that opioids. Another option is tramadol. I feel for you having to deal with stress of potential physical dependency. For her PCP to speak to you, he would need a signed release from her. Did she sign anything when admitted listing relatives who the hospital could speak to about her condition? The PCP would probably not be included in that but if she signed one for that purpose, she might sign something similar for PCP if it is framed as helping to coordinate her care. Also, although the PCP can’t disclose too much, he can certainly listen to all you have to say and would probably welcome the information.
0 -
Z thanks so much for starting the thread, i feel so bad in having to be so gloomy. It was hard for me to get to even type. She so wants to move on and this is like a boxing ball just keeps coming at her. Today another day of the same. I'll post about it there. Thank you for all your effort.
About the referring pain, it makes sense, she was in so much pain after the Y90 exactly in the area i saw on the site, now it makes sense.
Animal Crackers so sorry this added problem you have to deal with. A lot has to do with personality, a lot has to do with pain. Pain unbalances a person. Maybe if you show her you believe her, and buy maybe some organic stuff, maybe a tea, tumeric (that we heard here so much)and some type of other vitamins that could hep with this pain, she might calm down a bit.(just saying...)
Thank you all for such kind words and enormous support, i knew you would all understand. One thing i knew is that staying at that place would be a death sentence. Of course no one knows what's next, but at least they are looking at her as a human being.
0 -
z - and to all who are sharing shoulder / liver pain experiences. Now Hubbg has asked me if is could be related to that pain in spine that shoots from 0 to 9 in a minute then drops off. Am going to check location of C3, 4, 5. Good question.
I know I have been dehydrated for weeks and was told by new ex-onc's nurse that my labs when I was there proved I was not dehydrated. Ough of course, I have all physical symptoms.
Anyway, trying to drink water by so full.
This morning I woke and my urine was colour of root beer and that was watered down w toilet water. Liver was sore. Lovely. Drank 3 glasses water in 4 hours and got clearer, no immediate worry. Though that too is a sign of liver disease. If it is like that tomorrow I am going to Rochester ER and putting myself in their hands, not back to Goshen.
My sister counseled me that tomorrow morning I cast a wide net for a new oncologist that will work with me and not control or mislead me. A few leads.
Mom/Dani I am going to talk to you on the new link, favourited it. Serious business, it is, to face and so hard to find the truth and a medical team that are fully behind you and saving your life , meaning your daughter's and my own and anyone else on the edge. And yes, the med pros do have the jargon memorized.
0 -
Serious question -
Has anyone been on abraxane before taxol? Chemo infusions? If I don't have the abraxane confused w another, then I was told insurance wouldn't pay for it until there were two medically recorded incidents of allergy to taxol.
0
