How are people with liver mets doing?
Comments
-
hello sisters. Well after clean scan in Dec, my markers were 72ish, January markers were 115. Ugh. Seeing Dr Thurs s going to get off chemo and on to his plan of falsidex and ibrance. I'm guessing he may want a PET scan now. Don't know why markers are all over the place. He told me on Jan that my Markers may never be in normal range. Last summer I hit an all time low of 17, that was great. So I am obviously hoping for a clean scan. Hugs to all
0 -
Hi LvinAZ44. I've been thinking about you. Sorry the TM's are all over the place, but wait for the scan to worry. Tumor markers are flakey indicators. It's a great idea to go from chemo back to faslodex and Ibrance. Good plan, good doc. Let us know how this all plays out.
>Z<
0 -
Letmywifeli wish you the best with Xeloda. It has a very good chance to work.
D's numbers tanked all the way to .25 WBC - Anc something of the same/ low platelets and HGB 7.8 - 3 days of utter misery, Neupogen did not help, she had to go in for Neulast shot, but it took awhile for it to work, she ended up in the ER, by the end of the day, 3s cam up a bit, so that's where we are at.
With Neulasta they said you have to wait to get treatment? Is that so? She was getting Neupogen, but if it's not doing it's job then…
She missed of course treatment last week, and 2 weeks before that, she is off Xeloda, Ixempra/Herceptin the question is gonna be which of these is bringing her #s so low. She started Ixempra the same time as Xeloda so how can they tell?? Any ideas? I really hope Onco does not say she has to get off Xeloda.
Meanwhile the disk herniation, was NOT! they misread the Images. I kid you not, so what we are dealing is with a lesion pressing on the nerve, now RO has to convince herself she has to radiate it, although it was radiated before.
Kaayborg it could be very interesting, but D's onco would not do it, She doesn't even want to do a biopsy, she doesn't wanna mess with D, Onco says. Just waiting for next scan. D told me the other day it seems she eats just to go for scanning and infusions, it's getting to look a bit like that.
Shetland I wish I would know the best modality, i've heard MRI but can't get doc to prescribe for Dani.
Z how are you coming along?
Robin good luck,
Lita any news yet on the scan? Just saw your picture with the glass, here I am raising it back at you. Love your humor, it's the only way.
To everyone gn,
0 -
Mom - I'm doing okay. Had a bug which of course raised all the questions about what is causing the symptoms. But now that both my kids are sick with the same symptoms, I am sure it was a bug. Never been so happy to see the kiddos sick with nausea and fatigue.
Sending the best to Dani. Sounds like a very hard week. I learn a lot from your posts and particularly how vigilant you have to be with getting the right meds and diagnosis. That disk herniation thing is just another example. When I went to get my Faslodex shot today, you bet I read carefully the box of the medication they were giving me. I am quite sure your example will save my life in this process. I have no MomAllTheTime. I have to be my own.
>Z<
0 -
>Z< Hope your feeling better! Did you add Faslodex to your treatment regimen?
Mom, I really can relate to the eating issue. Last year at this time I weighed 120 and now I'm 105. I do not enjoy eating like I used to. Sending prayers for you and Dani.
Robin
0 -
I am still on my first line treatment .... letrozol, ibrance and ovarian suppression.
Faslodex with something would the next move. Not that I'll ever progress, of course.
>Z<
0 -
Hey again, Well I got knocked on my a^^e on Monday at MO appointment. I start Navelbine tomorrow, it is my last hope at this stage. Due to the way the cancer has infiltrated my liver, and how extensive it is, no rads or ablation treatment is possible.
As I have had so much rads, my bone marrow is in a bad way, it doesn't take much to drop the neutrophil count to close to zero. The rads did give me great quality of life for the last 6.5 years, so I don't regret having it. I have failed on so many chemo's already, neulasta and neupogen don't make much of a difference. Faslodex was working great on the bone mets, but did nothing to stop the liver mets from growing.
My MO has sent my medical records to as many other MO's as she could for their opinions. I live in a rural area so this is the best way to get a second opinion. Unless one of them come up with another suggestion, and if the Navelbine fails, then I am looking at weeks, maybe months if lucky.
I was shocked as I thought I still had years and options. Sorry, I know I am waffling, still trying to get my head around it.
0 -
Big hugs to you Freya. It seems there is always something new coming out, I hope for all of us it is something amazing!! We are here for you!!
I am 6 days into the new trial and still feel mostly normal. I think the dexamth mounthwash has kept most of the mouth sores away. I am on the arm of the trial that takes no breaks with a lower dose. Also, we all got the Ribocyclin, no placebo!! So I am at 300 mg every day and the other arm is similar to Ibrance, 3 weeks on and a week off in between. I started reading through the A/A threads since I am paired with that. Also sending big hugs to Dani, momallthetime!! Hope everyone is doing well!
Alissa
0 -
LvinAZ44 i am constantly trying to figure out which scans are best for what, I think that doctors don't know either. But MRI seems to be 2nd best after PET/CT.
Aww Zar I am more than willing to be a stand in. Really, anytime. I am a basket already anyway, so…
You really made me laugh with so happy to see the kids havg a bug, so true though. Dani and I looked like silly teenagers when we heard it was the lesion with have to deal with, so rads for now instead of surgery to the cervical area and upper thoracic. Only you guys could get that. I was telling her in the car, can you believe we are smiling that it's a tumor…Insane! Don't think we don't curse each other out, she is very angry that I have to deal with it (she doesn't tell me that, but i know, because she knows how much it hurts me, but it's unspoken) ) and I'm always the bitch telling her the bad news, telling her about the scans that are probably due, shlepping her to one more doc, when all she wants is to live a normal life. Oh my gosh! What's a normal life???Cannot remember at all.
Hope the kids are feeling better, it is awful to see them not well.
Freya wow I could truly imagine what you are feeling, I must say we go through this all the time. Navelbine was D's onco's first choice. What about Xeloda, were you on it already?Tykerb? Those are supposed to help with liver for many here. What about biopsy, to check if anything change, would that be an option? It is nice to have a Onco that is willing to go the extra mile to help you. Warm hugs!!
Hmm D's neutrophils were zero, ANC 0.06 you name it, but can I assume it was from the chemo? RO said something that she thinks it's getting worse, I should not be surprised, WTH, i assumed she didn't understand what's going on, I don't have the info in front of me from yesterday, but the WBC went up to 33 (Neulasta) i'd assume ANC would follow...that it's not the bone marrow...she also had quite a few rads...can't stop thinking about it.
Rads to the spine next week, and brain MRI sunday, so maybe we'll know if this Ixempra/Xeloda/Herceptin is helping. I did see that CA15.3 that was going down and had Onco thinking treatment is helping, went up a few points this week, weird and weirder....
Do you guys take the CA15.3? Is it a marker the doc goes by, do be honest she would go by of how D is feeling also, but I have no details of the liver other than it's extensive mets all over the liver. (from Pet/CT)
0 -
hello ladies,
My mom's no took a leave of absence. Now she has a different one. Dr blanchette. He used to work at sick kids in Toronto. My mom was Ned as of 30 days ago. Her blood work was good. He wants to put her on weekly taxol. Three weeks on, one week off for maintenance. He says the liver is hard to treat. She's a little disappointed. She wanted her hair to grow back. I guess it's a low dose.
She is triple negative. Does this sound right? She really trusted last doctor. The last one wanted to wait and see. Here in Canada, the health care is free. Which is great. However we don't get to pick who we get.
0 -
Hi all. I'm sorry, I don't post often, but read a lot. But feel I only post with problems, so I apologize. I thought about starting a new thread because I searched and couldnt find anything, but just couldnt do it.
My husband and I are struggling through the process of divorcing. Between all the terrible emotions that brings up- and being stage IV- I pretty much feel like im failing at life right now. Id greatly appreciate any words of wisdom or ways to cope. OR if anyone has been through similar and can tell me it gets better... I do see a therapist, which helps immensely
0 -
Well I finally got my Foundation One report back on my liver tumor and it is pretty much the same as the one from 2 years ago. I have a Bard1 mutation and a PARP inhibitor could be a target. My MO says there aren't any approved for breast cancer, but they are approved for ovarian cancer. She said she could probably get it for compassionate use.
I have been on Letrozole for 3 weeks and she is adding Ibrance. The last time I took Ibrance at 125mg and it killed my red blood cells and I was always dizzy. This time we are going to do 100mg. I will get my tumor marker back tomorrow and I'm hoping they are either stable or lower!!!
My MO said she heard ribiciclib (LEE011) was coming out tomorrow. Guess we will see, but anyhow it will be coming very soon! She said the other CDK4/6 by Lilly (still in clinical trials) is going to be better. She said it won't cause as much havoc on WBC and it will be able to cross the brain/blood barrier. So a very good drug for brain mets!!!
I asked her if she could have my tumor tested for PD1/ PDL1 and PIK!3. I also had her run my hemoglobin A1C to see how my body processes sugar. She paid me a nice compliment and said "I need to have you come work for me" I laughed and said why because I'm so aggressive and bossy? She said "You are very well spoken and articulate, and you know how to take care of yourself." I told her I learned to be my own advocate after my first MO did me a huge disservice. Before I left her office I summarized our entire conversation with her.....just to make sure she didn't forget! (which she has many times in the past!)
>Z< the reason I thought you were on Faslodex is because your post above said you went to get a Faslodex shot? LOL I bet you meant to say Zoledex?
Letmywife, Did your wife ever get her Foundation One report back? Any additional targets identified?
Robin
0 -
Yes I was talking about the ovarian suppression shot. It is NOT faslodex. There are too many drug names and I am on my third week of the ibrance cycle. I am totally out of it.
I am glad ribociclib is coming out. At least some competition for Ibrance. The price needs to go down so they can have it in canada, europe and the rest of the world. This will happen quickly now. Otherwise ribociclib looks to me like it is the same as palbociclib/Ibrance. Not really a new treatment. They need a snazy new brand name. Can't wait to find out what it is. Shall we propose some? YouBrance?
Abemaciclib is the other CDK 4/6 inhibitor in the pipeline. It looks to me like it is a little better targeted so it has milder side effects. I don't know if the efficacy is higher, but I'll take fewer side effects. My blood counts are fine, but I am tired of being stupid.
I am blown away by your post. You are one badass patient indeed. In my experience, they love it. And I can tell I would like your new onc. Way to go getting your self well-positioned. That is what it is all about.
>Z<
0 -
Lita nothing yet? I'll check on the other thread. How are you?
I posted on the bones thread sorry to double up. But, guess what, Insurance decided that WBC 0.25, ANC of 0.06 did not warrant urgent Neulasta, they are refusing to pay! How dare they? Neupogen was obviously not working this time around, she barely could move, HGB low - e/t tanked, D ended up at the ER (Neulasta took a while to work), so that's gonna cost Ins a bit, they are lucky she did not have to stay for days. Now we gotta fight it.
Like yeah, make this monster be your full time job, so one cannot think of a/t else.
Robin it's the only way. Let me ask you, do you have a high sugar count? D has quite low. Just wondering why you asked for the A1C?
0 -
Z - I get all the medications mixed up as well. I once referred to my Zoladex shot as xeloda shot. Lol. I know all these meds mess with my brain and especially my short term memory!!
Mom, my glucose readings are always normal. I asked for the hemoglobin A1C to send to my naturopath Dr. Im wanting him to give me a scriit for Metformin.
Robi
0 -
MomAllTheTime - OMG. I don't know how you do it.
>Z<
0 -
jamiemarie--I don't post much either. I am so sorry to hear of your struggle. My husband and I have been round and round for the last four years. We haven't talked about divorce but I'm sure it has crossed both of our minds at some point.
With stage 4 cancer....everything is stressful! Finances, work/no work, laundry, cleaning, fatigue, emotions, friendships...the list is long.
In the beginning, My husband did not handle things the way I thought he should. I tend to do this often. He didn't read up on things like my dx and treatment options...etc. he was very understanding and tremendously helpful with the kids and the house during taxol. Once I dropped that, I guess he thought I should go back to normal. We have both struggled mostly with my fatigue and depression.
I have thought to myself, if I leave him now, the pain for him will be less. And the kids too. They can go on with life and not have to watch my die slowly. Not sure if that makes any sense whatsoever.
One thing I would suggest...as the patient, we get all of the attention and support. We (usually and not always the case) have an army. I imagine being the caregiver is way more difficult! My dh has had no one to talk to. No one in a similar situation. Until recently. An old coach of his insisted they start meeting every Monday before school and talk. It has made a HUGE difference! He even asked me questions about my treatments and apologized for not being more vocal and supportive (for the last 4 years). I told him that it was ok. I have lots of people to talk to about cancer. I just need you to be my dh and a father. He hasn't been super involved because he can't stand to think about our situation much less talk about it with me.
I'm not sure what the issues are in your marriage. Just giving you my thoughts/experience. Would your dh consider counseling for himself or with you? Guy's usually aren't very willing to go to therapy. They are fixers and our dh's can't fix this so they are kind of lost.
So sorry for all you are going through
0 -
Hi kjones, thanks so much for the thoughtful comments. I really appreciate the perspective and being so caring.
You bring up a lot of good points that hit home for me. We had our share of struggles, and then when I was diagnosed, instead of bringing us back together, it just widened and exacerbated the problems. When I went through all the shock and emotions of diagnosis, I turned inward and didnt want to talk about it with anyone - family, friends, or my husband. He has told me that hurt him a lot. Which then manifested in him disconnecting- in many ways, but in terms of cancer treatment, he wouldnt ask me how I was feeling or how doctor appointments or scans went. He just ignored it all. With all the feelings scans bring up, plus some health setbacks, I just couldnt get over him not being there.
You are so on point with caregivers often feeling left out. In my own example, I can look back and now see some of that contributing too. I have kept the number of people who know about my diagnosis very small - its pretty embarrassing to say I didnt think much about how that was probably very hard on him to not have people to confide in.
I guess I am just at the point where Im trying to get some perspective. I know we all wonder what life would be like if we didnt have cancer. Like I said, we had our share of struggles before my diagnosis, but there is no doubt in my mind that it (and all that goes with it) sent us over the edge. I know I would have done things differently post-diagnosis if I had the perspective I do now. But I also try not to blame myself (too) much, because I was just trying to survive mentally, physically, and emotionally then and now.
Any maybe its just easier to blame the cancer than myself and my actions...!
Thanks for listening to me ramble
trying to get my head around things and feel safe here0 -
I think the stress of this diagnosis impacts lots of us!! I was diagnosed de novo, so there was no early stage fight to gather experience. My husband likes to be an optimist and I try, but am a realist. I think we also struggle a lot with my fatigue and anxiety. Some weeks are easier than others. Hugs to everyone going through this
0 -
jamie - i am open with my family about what is going on with my treatments and diagnosis, but spend most of my time working through thoughts and emotion on this forum and with friends. my husband kinda zones out the cancer and so do the kids. i think it's helped a lot. it allows me to go home and have things be normal, which is healthy. i can't imagine what i would do if my family was not stable and supportive. the stress ... you are in my thoughts.
>Z<
0 -
Jamie,
A husband and caregiver here. YES, it is very difficult on us husbands/caregivers too. But, there is assistance for us also, and I have taken advantage of that. My wife, KD, was diagnosed Stage IV out the gate one year ago. She, and our family, have been through a lot this year, but thankfully, we had a wonderful relationship going in. We were and continue to be a TEAM.
I have taken advantage of the opportunity to see a therapist for myself, and even began taking anti-depressants about 6 months ago. That has made a tremendous difference in my day to day life. Not that they do anything for my defiant 12 year old boy.... GRRRR, or his 9 year old brother who is addicted to electronics, but I digress. ;-)
When I first joined BCO, I was shocked at the number of husbands that left following a diagnosis such as this, but then I just had to assume that a good percentage of those marriages had issues prior to diagnosis as you alluded to. Leaving my wife would be the furthest thing from my mind. Besides, we have a verbal contract that states "whoever leaves the marriage has to take both boys with them", LOL. I need her around as long as I can have her here.
My prayers are with you both. Please know that it is perfectly o.k. for both of you to seek counseling either together or separately, and that anti-depressive or anti-anxiety medication is available for just this type of situation.
Blessings to all,
Louis
0 -
Can someone help me understand estradiol levels. When I was receiving ovarian suppression, the lowest my estradiol level got was 127. I had my ovaries out on Jan 12th, 2017 and on Jan. 24 my estradiol level was at 92. So I thought maybe it takes time to get out of your system. Then yesterday's test was at 76! How can this even be possible??? I just don't get it and my MO said she didn't know. I am on Letrozole and I know your estradiol levels need to be below 40 to be effective.
If anyone has any idea's, I would be ever do grateful.
Thanks,
Robin
0 -
Were those levels with an A.I.? Surprised they aren't lower
0 -
For those of you struggling with progression, here's an article on using estrogen as a second or third line hormonal treatment. There is a lot of data that says it is effective, partly because it was the only treatment for MBC before tamoxifen. Very counter-intuitive.
0 -
Mama2twinsplus2, Z, and Louis, thanks so much for the words of advice and support. It means a lot to me!! More than I can express!
Louis, I must admit, I saw the stats too and at the time, couldnt understand it. Never thought I would see myself in the same situation. But your description of your boys made me giggle. I have a three year old - just switch out "electronics" with "Paw Patrol"!
but my son adds a whole dimension to all of this - it really devastates me to think of how I may or may not be able to care for him in the future if I'm alone. I found myself thinking about a lot of different scenarios of being sick and how it could play out in my new reality. I dont want to "live for when I am feeling worse" but its hard to escape reality too. 0 -
Robin,
Since my wife started getting Lupron, her estradiol level has stayed consistently under 10, which is considered the target or postmenopausal range.
76 sounds high to me.
0 -
Robin - I am concerned about the high estradiol. A read a bit about estrogen levels and A/I's. They are currently worrying that they need to improve the sensitivity of estrogen testing because even if your estrogen levels are below the sensitivity of the existing tests, there can be a difference in the response to the drugs.
I'd be interested in exactly what estrogen test you are getting and what the units of the measurement you mentioned are. My doctors have measured many different estrogen levels. Frankly, anything above the level of detection of the test concerns me. I am mostly below the detection level of the tests, but I get a few results just above detection levels.
Estrone Sulphate <10
Estradiol 7 pg/mL
Total Estrogen 15 pg/mL
Estrone-Mayo <10 pg/mL
EstriolUncong-Mayo <.07 ng/mL
It's not enough for the doctors to shrug off these high levels. It could be a good simple question to ask those free second opinion resources I PM'd you.
>Z<
0 -
Letmywife, I was getting Zoladex and the didn't even lower my estradiol. So that is why I had the BSO.
>Z<, yes it is definitely time for as second opinion of the estradiol. My MO doesn't even try to monitor my levels but I insist. The she never comments on them, so I have to tell her.....IT"S STILL TOO HIGH!!! She even joked with me and asked if I was hiding a third ovary!! She said she had no idea why it was high! I have a call into the gynecology oncologist who performed the surgery. I want her to do the testing. Also I went through all my supplements to see if anything could bring the values up. I was taking IP6 with inositol and read that it is a phytoestrogen. I don't know if that would raise my estradiol levels, but I stopped taking it. I have blood work in 2 weeks and will see if it lowered.
I get so frustrated that my MO doesn't think measuring estradiol is a big deal. But with what has happened to me in the past concerning estradiol and being mis-diagnosed as post menopausal, Geez you think she would make this a priority since I am now on a drug that requires low levels. I am just so tired of this estradiol battle!
Robin
0 -
Robin - I know you are tired, but keep pulling that string. Estrogen suppression is one of the few things we know really works. From talking to you and other people about other issues, I finally decided it was time to put all my lab tests into excel and make some graphs. It's taking all day, but it's clear I am the only one who is going to watch these numbers ...
>Z<
0
