How are people with liver mets doing?
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>Z<, You are absolutely correct on that. I keep all my blood test, scan, and all other related information in a binder, but a graph is a great idea. My next project!!!
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I have an excel chart if my tumor markers for the past 6 years. It is helpful for those times when the marker is out of the normal range.
I can see where tracking your hormone levels would be very helpful.
We are our best advocates.
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My patient portal has all my data for the last 10 years since original diagnosis. I can see stats, trends and graphs of each component of my bloodwork, liver panel and tumor marker tests for any date range. Others may have this too, assuming they haven't switched cancer centers. I have switched doctors but not centers.
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My data is spread out across four laboratory systems/databases. The one with most data refuses to give me access to the data online ... only for doctors. This is actually the least of the problems I have with this lab. But it is true that many people have access to all their data online, in one place. If you do, make good use of it, but alas that is not my fate.
>Z<
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Robin my concern with Metformin is also that some ppl lose weight with these meds, something for you to keep an eye on. My Hubby takes it, he is not diabetic but doc wants him to watch himself, and he lost a little, not that he needs to, so I told him I want also, but I can't because my sugar levels are good, aghh.
Louis, you made me laugh out loud! You are on the ball. If not now, then when is a husband for? Difficult? Of course it is, beyond words. I try very hard to be in touch with my SIL, he is very attentive to all D's needs, I can't even ponder what it would be like if not. We live 30 mins away, I or her sibs are there, in a blink of an eye, if an appointment arises( all the time), and I go with her a lot to the docs, but it's not the same as being in the house. And trust me, she does not want Mom in the house! Besides, she is very independent, and wants to be as much and long as possible. Hubby helps with the kids, again we do when we can. But, he is the plant! We'll keep him.
I started with sleeping pills, the moment this thing wears off I am thinking about the situation, too hard. And therapist is great for everyone, you are doing a great service to the fam in getting support.
Z this is just extraordinary. Seriously, who could keep up with this. Margarine is good for you then it's not. And so on. I gotta read and reread this stuff. D was on Lupron when she was on A/I – at the time I don't know a/t about estradiol. So I don't know.
That's Dani's motto, normal. So there is not much talking about "IT" unless she needs to tell me something. I don't know how she does it not really discussing it with anyone, but it is what it is.
You guys are so correct, I think all doctors tend to overlook a lot of things. I do put it in excel, but it's such a mess, that I don't even know a graph would help. The portal has a graph for vitals but nothing about treatment.
I looked over the synopsis sent to D's primary, he faxed it to me, and it says, that her HGB was 7.5, and "wants to wait for lab results next wk for transfusion", it's a straight out lie. We never said a/t. I did not know her labs were so low. That's the day she went in just for the Neulasta shot, I did not go, and they said there was no space for a transfusion chair till Monday. It was Thursday. I am fuming. Now what? I don't really wanna call them on it, because we need very much their attention now, things are shaky, but I don't like it. Still dealing with the mess they made with the report being wrong, and some docs missing it by not looking at the images, and only by getting a 2nd opinion they caught up with it, now they are trying to make nice.
Last week no Xeloda due to tanked #s, she started back on it at the end of last week, and had to stop again due to rads to the T1/T2. And now doc is thinking in changing treatments altogether. Hmm, we have to wait for them to let us know when to come in. I am none too happy about all that. Tonight is Brain MRI follow up. So much is gonna be talked over. No treatment for 2 weeks. Herceptin only.
Lita, what's doing?
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Hi Lvinaz44: I have been on Ibrance and Femara since 10-2015 and in July 2016 my pet scan showed that my big tumor was gone and I just had a little one. From July 2016 to now I went from 1 little tumors to 6 tumors. 2 big ones and 4 little ones. One of the big ones is the one that always comes back. All hell broke loose in 6 months. My doctor found out that the Ibrance only works for a little while. one patient it worked for 6 months and another one 8 months and I was one it for 16 months. It stops working after awhile. now I have to have ixempla once every 21 days for 6 months and if they shrink he might put me on xeloda. I really thought the ibrance and femara pill would be my maintenance pill but doesn't look like it. I was thinking maybe after chemo I could go back to it and maybe it would work again for awhile. Has anybody else have the same thing happen to them after being on Ibrance and femara. I have been fighting mets to the liver since 9-2012. This will be my 4th chemo. Every time we stop treatment they come back. This is the most tumors I ever had. I still remain positive though and I won't let this dreadful disease beat me down.
Robin
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Buras54 my daughter is on Ixempra but it's 3 weeks consecutively. One week off. Also, Xeloda, and Herceptin. She is triple positive. She was on Ibrance and Letorozole ofr a few month, it wasn't great, and then the liver masses showed up and multiplied from 2 to innumerable in 4 weeks.
Boy, this thread is quiet. Take care everyone.
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I'm still waiting for my results from PET on Tues. Looks like she won't be back from vacation until Monday.
Major anxiety today....I have had new pains in the ribs and lower right side so am trying to steel myself for the dreaded word. I have been on Ibrance and Anastrozole for about 8 months. But last scan showed two very small spots appear on spine and omentum. Can't believe I have to wait this long. It's hell. May be switching to Affinitor/Abraxane? Robin, I like your attitude. Wish I could steal a little chunk of that!0 -
Artist, I am so sorry to hear that, and it's awful that you have to wait so long for results. May you find something wonderfully distracting to help the time pass quickly.
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artist - they send me my results the day after the scan. I need to review them and line up my questions before I get my 20 minutes with my onc anyway.
Push back and get your scans on Monday first thing. They have no business holding them.
Unfortunately it seems that generally people know when they are progressing on this forum but I am praying you are wrong and those little spots are toast.
If not, lots of options for you. It's far far from the end of the road and the road keeps getting longer.
Z
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artist- I was waiting to share this until after my appmt with my MO on Tuesday, but I am hoping this can give you some reassurance. I had a PET scan on Friday 2/17. My results are not available until the following Thursday, at which time I can access them in my chart. Do you have access to your results online?
I had right side pain through Nov/Dec, and then some significant rib pain in my back Jan/Feb. My tumor markers are in the 400's and have been rising. I am on my 9th cycle of Ibrance/letrozole. I have been preparing myself for progression since November when I had a few very rough days. At my January MO appmt, I asked for a PET scan well done with a side of Fulvestrant. I told my MO that I had hoped for a longer run on the Ibrance. He said "don't push the panic button yet, let's just see where we are here"
Lo and behold, I read my scan results on Thursday morning and I am STABLE. Unbelievable. I hope this might help you to get through the awful waiting period. Love and hugs to all, MJH
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MJH - YES!!!! Now lets get the same results for Artist. The normal aches and pains that come with this situation can be quite a head game. I have no tricks whatsoever for waiting for scans. I go numb and start planing my funeral. This is not advisable, of course.
>Z<
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I'll be keeping my fingers crossed until my March 6th scan to see if X is working. My HFS has improved some after lowering the dose from 4,000 mg daily to 3,000 mg daily. Still peeling tons of skin off my feet but they do not burn as much as they did and my hands are much improved. I am losing hair however, legs, arms, nose and eyelashes. Had to resort to false eyelashes today as mine are puny when they've always been long, dark and thick. Oh well, if could be worse.
Anyway, I do hope everyone here is doing well. I'm happy to hear you are stable MJH - I hope I am too.
Much love all,
Amy
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MJH Hooray to you! What a relief. So you could say in your case TM's don't mean anything?
Artist, so sorry you have to wait so long. I tell you how it has worked for us. When D goes for the scan, she asks them to send a report to PCP also. It never happens on it's own, as it should. I always call pretty much the next afternoon, and ask if the report is ready, it usually is, and ask them to send to PCP. PCP's office is more accessible to us, he also sends me the fax so like Zar says I could be prepared to speak with Onco. If it's really bad, he will call even in the middle of the day.
Onco's office takes their time. It's run like a factory. Also, I have gone to pick up the report myself to the Imaging place at times. I cannot imagine having to wait this long to get a response. And yes, the portal only posts it like a week later, I always wonder why, they think someone is gonna hang themselves? I don't understand. Wish you warm hugs, and all fingers crossed for good news.
Amy, so glad that your Se's got better.
Let's hope this time around Dani's numbers will hold and she won't go through the hell she went through these past weeks. She had rads to T1/T2, they were kinda taking their time procuring the best way to do it, and I spoke to RO to remember that she is off treatment so they should get moving. Well it's done, and now she will start today.
Her AST/ALT have been holding, BUT the Alkaline Phosphate has been going up - is this something to be concerned about? Her CEA also all of a sudden has gone up. But aside of her TM's, which I don't bank much on, is the BT telling us something?
TIA
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Mom - All I know is that my doctor thinks CEA is the least useful tumor marker. Let's hope the BT is nothing. Blood tests are really just indicators of risk. They are never conclusive indicators.
I also have a local doctor with better access who helps me get reports when the hospital gets hung up on protocol.
>Z<
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Thanks sweet Zar, it's just really spooky, no treatment and then this thing with the Alkaline Phosphate...Let's see what this week will bring!
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Well after reading how long everyone has to wait on the PET/CT results, I consider myself very blessed. I have to travel an 1 1/2 hours to get scan and see my oncologist. She was nice enough to suggest getting scan early in the morning and coming back to her office 4 hours later. She says it takes about 4 hours after the scan is complete, so I only have the 4 hours of anxiety. Me and my mom usually go eat and shop for a couple of hours. I truly can't imagine waiting a week for my scan. I think she does this for me so I won't have to drive the distance for a second appointment.
Mom, will be thinking of Dani as she goes through radiation and pray it knocks the crap out of those damn "c" cells.
Sending positive energy for all of you waiting for results!
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Z, AmyQ, Mom- thanks so much for celebrating my news with me. We all deserve every victory we can get.
Z- I hope lowering your dose to 100 does the trick for you- nobody wants to feel like they are wading through Jello all the time
AmyQ-I had heard that X causes the hand and foot thing, but wasn't aware of the hair loss-- are you kidding? Give us a flipping break here! May the force be with you as you deal with that garbage while being in scanxiety mode as well.
Mom-who knows about the stupid tumor markers? My scan did show many active lesions, and a handful really lit up- maybe they are throwing off a lot of the tumor marker protein? My overall SUV's or glucose activity units, or whatever the heck they are, remained the same as I had in September, taking into account expected variation in measurement. ALP or alkaline phosphatase is an enzyme associated predominantly with liver and bone. When elevated in the blood, it indicates liver or bone damage. I'm surprised that all of us don't have increased ALP, considering the bone mets. Did Dani start the radiation? Seems like that could elevate the ALP. MO will probably shed light on that. CEA used to be used mostly to monitor colon and lung tumors, but other tumors can produce it also. Do many MO's order it? Not sure if it's commonly used for breast cancer.
thinking of everyone and sending love and hugs! MJH
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MJH you've been such help, thanks everyone! MJHJAN they do the CEA and C15.3 (supposedly this one checks if treatment is working), I don't go so much by that. She did start and finish the Rads. But this BT was taken b4 she started. Tomorrow is again BT, we'll see if it was just a bump or it's the norm. That is what I am afraid if something is going on with the liver. I know all the mets are pretty much still there, just did not progress on last PET. Just wanted to be prepared. Actually going at it blindly, Oncot's office is really NOT good in explaining stuff.
Rpoole it's so nice you do this with Mom. She always accompanies you? Really glad for you. And yes, it was considerate for Onco to have you wait around for the results.
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Mom. My mom always wants to go with me. We usually get a hotel in Nashville the night before my scan, since the scan is so early in the morning. We always enjoy laying in bed in the hotel room watching the Investigative Discovery Channel together, one of our favorite shows. I am glad I have this time with my mom! My family is very precious to me and I want to be with them all the time. When I was first diagnosed with stage 4, I was living in Knoxville TN, but I immediately quit my job and moved back to Alabama to live with them.
I just love how you fight for Dani! You are a wonderful Mother and she is lucky to have you!!
Robin
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Met with my onc today and did get some answers to questions about embolization but ultimately with get fuller details from the radiologist when I meet with him mid-March. I asked about why now rather than when I have progression and am in need of a new effective treatment. She said two things: One is that the procedure can only be done with liver enzymes in a particular range; they cannot be too elevated. Second was that sometimes the liver can change very rapidly and the window we have to find a new treatment can be small when dealing with larger highly aggressive tumors (that's me). So shrinking the tumors more may buy us some time before encountering a "crisis mode" where the liver is at high risk. This is similar to where I was at diagnosis, though not quite.
Sounds good to me as far this reasoning goes, though interestingly she had no recommendation for me whether to do or not. There is no long term data for the breast cancer patient, only those with primary liver cancer. At this point, risks seem pretty small with potential to gain good results. I'm eager to meet with the radiologist to know more.
Any news from the others of you considering this treatment?
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Kaayborg, My MO only wants me to do microwave ablation. I was set to go back in January but when they did another MRI of liver I had two additional met that the PET did not pick up. So the plan now is pray the Letrozole/Ibrance knocks out the tiny mets and have the larger one ablated with microwave. I am approved for the SIRT procedure but my MO advised against. She said it can damage some of the healthy liver and because of my past history of hep B, she advised against it.
What procedure are you choosing to do? I want to hear all about your appointment with your RO. I am excited for you!!
Robin
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Kaayborg, no news, but I can say that the interventional radiologist told me that with the radioembolization, there is low risk of bad side effects if the patient is healthy with good liver function. The procedure is riskier for liver health if there is a high tumor burden. So the idea of catching the window makes sense. They don't want the mets to outrun them. My radiologist said that greater that 40% respond to some degree. Is that about what you heard?
I recently had a baseline CT with contrast, ordered by the radiologist. It shows progression from last month, but nothing is huge. So I need the doctors to watch it and give the signal if it looks like the cancer is picking up its pace and may outrun the new drug combo. I realize Faslodex can take a while to work, so I hope it remains safe to wait. If it does not work well, we may proceed with radioembolization.
Artist, any scan results?
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Thanks everyone for the good thoughts and Z for your level headed comment! I finally called on Friday as the stress was tweaking me out. She wasn't there but thankfully called back that night so I could relax a little over the weekend. MJ, they do not post my scan results on my sight only the TM's and lab junk.
The liver tumors have shrunk a bit again, which is good. But the right side pain she suspects is caused by a small met to my 7th rib. Plus a new tiny one on my L2 and sacrum. I'm not sure whether to be happy the liver is better or freaked out that it is popping up all over....she says it's good and mostly stable so we are holding the course with my Tx for now.
Sorry about the hair Amy. Everything that affects our looks or well feeling can be such a blow. I hope its working too.
Shetland, Sorry about the slight progression. Glad it wasn't huge and yes the Faslodex can take a few months to kick in. Between you and Kaayborg, this is all very intriguing to me about the local treatments. My Onc once told me that once you have more than one tumor that none of that is viable. But between you and a few other women on here it sounds like there are Onc's who are a step ahead on this thinking. I am very anxious to see how it goes.
Robin you are so lucky to have a close relationship with your family and particularly your Mom. My Mom is gone and 2 of my 3 sisters haven't really been there for me so much which hurts. Mom, you are such a great Mother to Dani!
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Artist I was surprised to learn there is a local treatment available for multifocal liver disease.The radioembolization does not target particular tumors. It radiates the whole liver from the inside, though tumors get more radiation because they have more blood supply and the radioactive beads are placed in the bloodstream. Freaky. It is only recommended for liver-only or liver-dominant disease.
Please remind me -- Is this the first sign of bone mets for you? I think it is important that the liver tumors got smaller. Now they need to keep shrinking, along with the spots on the bones!
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Robin, I'm glad they are being careful of your liver. "First, do no harm." I think it's wonderful that you turn scan time into quality time with your mom.
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Artist, I think that is great your liver tumors have shrunk!! Sorry to hear that 2 of your sisters are not there for you. I am lucky to have my close family to help me deal and get through this. There are several different local treatments for liver mets. I like to incorporate local treatments along with systemic treatment when I can. From the very get go after stage 4 diagnosis, I had proton therapy to my chest wall and it completely resolved the mets and they have not come back, and its been almost 2 years!! (Knock on wood!)
Shetland, I look forward to reading about your success story after the radioembolization treatment!!
Robin
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TACE is another way to treat multiple liver mets. I've seen people do with an extremely high tumor load in the liver. Here is a description from BestBird's guide.
Transarterial Chemoembolization (TACE): In this technique an interventional radiologist injects a chemotherapeutic agent directly into the arteries supplying the tumors within the liver. Embolization therapies such as TACE have been used for the last two decades by interventional radiologists to treat liver tumors.
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Artist, I think all in all good news that liver tumors are stable and no treatment changes needed. May it be true for a long time.
Robin, I'm planning on radioembolization which as far as I understand is synonymous with SIRT. Appt is March 16 and I'll tell all I learn afterward.
At the time of my dx, when I asked about local treatments, I was told none were possible until I had only a couple smaller tumors. My onc said Tuesday that radioembolization, which can be used on multiple tumors as Shetland well described, is now being used in breast cancer patients with liver mets but it is not considered standard treatment. It'd be great to have long range data that says it extends life for the bc patient but I'm good with hoping for the best so long as the risk is light, as it appears to be. We'll see.
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Artist - congratulations on stable scans. The "new" mets sounds small and may or may not be progression. Scans may or may not pick up small mets. So I'm calling you stable and just awesome in general.
>Z<
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