How are people with liver mets doing?
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thank you grannax I’ve never heard of that before. I’ll try research it a bit. x
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Nina- how about Kadcyla otherwise known as TDM1? Is this available there? I just started that as I don’t tolerate Herceptin and after 5 years on Xeloda I had progression.
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Robin - Thank you for thinking of me so soon after surgery and taking time to read my posts and think about them so logically. First I am concerned about you. Clotting is a huge issue for cancer patients with many potentially serious complications. Are you treating it? How are you feeling? Very concerned.
Sooo … yah. It's hard for me to understand how 40 mets could sneak up on me like this without ever being hyper metabolic and showing up on a PET scan. You have given my posts a close read and considerable thought to pick up on that.
The liver is tricky because it is hyper metabolic to begin with. The mean SUV in the liver is around 2.2 and there is a lot of variability. In other tissues like breast, an SUV 2.5+ is considered cancer. So you can have slightly hyper metabolic activity, and growing tumors, hidden in the activity of the liver. But 40-50? It's my project for the week to ask a few experts what kind of scenarios would have that outcome given my scan results for the last year.
My CEA steadily rose over the summer and then began dropping once I started treatment in Japan. I am waiting for some very delayed blood test results but CEA seems to be my marker at the moment.
Your experience with PET/CT is very interesting and confirms my new conviction that PET is not a good way to monitor liver mets. CT with contrast or MRI is necessary. I am not alone in this view as most of the major cancer centers have moved away from PET scans.
The lack of detail in the reports is clearly a strategy/policy of my clinic. When I talk to the radiologists at my clinic I get a whole different picture of my scans. They will talk to me for an hour but they will not send me an email with any clinical observations. If there is any real review of reports, it is to redactto detail. As long as I know what questions to ask, I can navigate the system. But I still don't have all the pieces, apparently, to get the full answer out of these people.
You'd think my onc would be the one to ask these questions but this latest episode has revealed that she is strangely ignorant of the application and limitations of the different scans. I have been able to work with her because she listens to me and we always get to a plan I agree with, but I need more expertise and more attention to my case.
I was in a yoga class yesterday. Yoga can bring clarity and get to emotions not usually available. I started crying because I realized that my onc is not fighting to get me through this … and past this. She never says it, but by her actions I see this is a palliative effort for her. These details in the diagnostics and treatment strategies don't matter. We are just tracking my steady demise.
I began the process of switching oncs anyways a couple of weeks ago due to collective impact of all the errors these past weeks. It will take a couple of the months to change so, in the meantime, I continue working with her. So far the interaction with the new oncologists team have been impressive. I haven't met the new onc yet.
Good job getting your bloodwork done. You are the princess of pro-activity and my new hero. I can't believe how your attitude and approach to treatment have evolved since we first met.
>Z<
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Love how you hosted the soccer dinner after the biopsy! You are my hero
I have been fine but napping!
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thanks to everyone for your support for my liver biopsy. it went fine.
I am not usually squeamish about pain, but had been having a lot of abdominal discomfort for several days.
All is well.
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Great news Jeenee - I get a liver biopsy and a bone biopsy together on the day before thanksgiving. I'm going to ask for a higher does of fentanyl or whatever the good stuff is and I have no plans to do anything the whole long weekend. If anyone wants to eat its up to them ... Not a hero. The soccer dinner after liver biopsy thing was really a scheduling error on my part, but I did make it through. Liver biopsies are not bad.
>Z<
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Z, your thinking is correct regarding the different types of scans. PET was not intended to be a cancer monitor. It is a diagnostic tool which helps pin point areas of activity. It is through CTs and MRIs with and without contrast that we see what is actually going on. Kind of like the differences between a "screening" and a diagnostic mammo. The differences between CTs and MRIs is also specific depending on the purpose and organ that is being imaged. Different doctors will prefer different images. For example, MRIs are the gold standard for soft tissue spinal imaging and are the gold standard for brain imaging. CTs work very well for bone and some soft tissues whereas MRIs do not. CTs are also fast so that if you are in an emergency situation a CT can give images in a matter of minutes v.s. a very, very, long exam time for an MRI. So there truly is not a perfect answer when it comes to which one should or should not be used. It really has to do with the intent and constraints associated with the body part. If cost is of concern and an MRI has been ordered, I would ask the ordering physician if the MRI would give better results over the CT. If their answer is something as simple as "I just like the MRI better", then ask about the CT. The cost is much less.
Just as a wonky note for all of us moms, the major exception in the use of MRIs v.s. CT tests is in children. MRIs are always preferred in this population because an MRI does not use radiation however MRIs often will require anesthesia. Kiddos have a very hard time laying perfectly still for long periods of time not to mention become quite frightened by all that clanging. So if you have a kiddo that the doc wants to do a CT on and it is not an emergency, question them as to why a CT and not an MRI or xray. Question, question, question.
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NO1-2NV - Thanks. I've noted that many of the smartest oncs do not like PET scans for monitoring but I did not understand why. Moreover, I did not understand why PET is not the best for me and my liver mets. MRI is best, but I had even stuck to CT with contrast and these new mets would not have been missed.
The assumption by so many is that PET is best but, as you say, it depends very much on what you are trying to accomplish.
>Z<
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Z,
No worries on the blood clotting. Mine was not caused by the cancer, but because of my tiny veins. I am a very small 108 lbs and my bones are very skinny. One example is...they use the pediatric cuff when taking my blood pressure. LOL! I had my port put in my inner upper left arm. It was great as far as ports go bc you didn't really notice it, and you don't have to be reminded of it every day. I have always been told whenever getting blood draws that my veins are small. The vascular surgeon said my vein was small and some scar tissue developed and closed off the opening of the tube inside my arm. There was no blood flow under my left arm. The clot was in the subclavian vein near the junction with the left internal jugular vein. I asked the surgeon if the partial clot in the interior jugular could go to my brain. He said blood flows to the brain in the exterior jugular and not to worry. I had already been given a little of the happy meds, so I don't recall my entire conversation. I have a follow up on the 22nd and have a list of questions. My MO has put me on blood thinners for 6 weeks.
I hear your frustration with your MO, because I am dealing with a very forgetful MO, who doesn't follow through on anything. And yes I have become way more proactive since we first met. Thank you for noticing!!! I had to learn how this MO operated and I realized, if I am not proactive...I will lose this battle with her as my MO. The only reason I am still with her.... she has the compassion that my 3 previous MO'S did not have. And this is a huge plus for me, because I am a very emotional person. She also has no problem with referring me to any kind of Dr. so I can pursue liver directed therapies, radiation, or even surgery. My past MO's fought me on this, so with my current MO... I get to run the show. This keeps me on the computer more researching, but this is how it is for now. My MO makes her suggestions and sometimes I have to tweek it a bit, and other times I flat out tell her no. A couple of months ago I thanked her for suggesting Carbo because I had a complete response. She replied, "Thank yourself, your the one who suggested it." LOL But on a good note about her, she had pull with the clinical trials and got me a slot right away on the Oliparib trial.
I chose to do PET/CT with contrast. They can do these at the same time and the PET SUV lets me know how active my mets are. I know that doesn't change anything, but I need to know what I am dealing with.
Z, You are a very intelligent person and you need an MO who respects that and can have an intelligent conversation about treatment. I am so sorry that your MO is not fighting for you. As frustrating as it is to change MO's you know what needs to be done. I am in disbelief that your MO could not explain the differences in scans! Seriously!! Thank you for the lesson in liver and SUV background activity. This makes so much more sense to me now. I read my scan report and 2 of my liver tumors were an SUV of 2.2 relevant to background activity of 2.2. I was wondering why my MO was questioning those 2 tumors being active.
Keep me updated on your upcoming scans.
Robin
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Z - you may have already explained this in another post so sorry if I missed it - but did anything show up in your bloodwork, other than the rising CEA, that would have been an indicator that something was brewing in your liver? I'm thinking not, because someone would have picked up on that - but then again maybe not... sigh. Anyway - my CEA has been climbing since I've been on the clinical trial and my oncologist has been pretty dismissive about it because the count is so low and only recently exceeded the high level of normal. He tells me there are people with counts in the hundreds and even thousands so I shouldn't worry about such small increases. But I tell him that everything is relative and my TMs have always been in the low normal range. But now I'm seeing movement. I used to be steady with CEA AT 1.2 and it has been creeping up over the past 5 months to 5.6. also I have never been comfortable relying on blood work to prove something is or isn't going on in my body because as they all delight in telling me - "you have pristine blood work". Um yeah but I have stage iv cancer so that's kind of meaningless to me.
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Z - you said, "I realized that my onc is not fighting to get me through this … and past this. She never says it, but by her actions I see this is a palliative effort for her. These details in the diagnostics and treatment strategies don't matter. We are just tracking my steady demise." That is how I felt when the oncologist at the KCC said about my liver lesions being so large..... "We'll do well to get the tiger in the cage and keep it there." When to me getting RID of them is the priority and if they had any resolve to hurry things along and get it right then they wouldn't be so large to begin with. That was one of my final deciding factors in going to the new cancer center. Who btw are proving to be extremely slow. I wish I could trust but it is ruined before I begin. They wil have to build my trust.
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Robin, regarding your port and the blood clot, I found it interesting that the other day t my scan was the first time they use Perception to through my port line to prevent blood clots. Every time I had an infusion they only flush with the saline to clear the line.
So my scans wee pronounced stable and even slightly improved which actually surprised me. It was a CT with contrast. I was surprised quite frankly as i do get twinges and little stabbing pains that concern me. He decided to switch from Abraxane anyway to let my neuropathy clear up so now I start Xeloda. He says we can return to Abrax later as it was working.
After all the debate here about MRI's, CT's and PET's I asked my Onc his opinion regarding the liver specifically. He said MRI was mainly for detecting tiny spots which may not be visible on the other two. Especially if there were concerning symptoms that may be signs of vascular infiltration. But he said he would consider one down the road as needed.
Z, i think sometimes we all feel like they are just going through the status quo motions and seeing us to the end. Today I did not though. My Onc seemed to have poured over my file and was very thoughtful about our next plan. I left feeling lighter for sure.
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Z I'm finding the exact same thing with my oncologist it's a palliative thinking. Pisses me off every time I see her. Time for a change for me also I think
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Animalcrackers, that is frustrating your MO is writing off your small tumor marker increases. That is a ridiculous statement comparing you to people who have super high markers. It is definitely all relative. My tumor markers are accurate but rarely go out of normal range (CA15-3 and CA27-29). However, when they rise, it is an indicator of progression. And the small increases in no way match up with the exponential growth in my liver they represent, but they are directionally the same.
Artist, so happy about your scan results! And that your MO gave you the attention and time you deserve.
It is definitely good that everyone is learning which scans work for them and which don't. It is truly a personalized issue and can be a matter of trial and error. What works for one doesn't work for another and vice versa. My MO prefers CTS but it is only because of the insurance hassles with PET scans which are often denied. I have experimented with both PET/CT and CT and got burned when I did a CT in lieu of a PET. It hid the fact that my Ibrance combo was starting to fail and I ended up with a scary explosion in my liver 3 months later. For me, PETs show that the metabolic activity is ceasing before my lesions shrink and that the metabolic activity is increasing before my lesions grow. One step ahead of the actual size of what is going on. But we all have different cancer beasts we are trying to tame and some of the beasts are better at hiding on some scans as opposed to others.
Z, when you went through your scans yourself, did you go back and check scans before those you reviewed from April or so to look for those hypoattenuating lesions? Very impressed your spent the time reviewing them yourself at the library!
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Artist,
They would always use saline and Heparin. Make sure they are using something to prevent clots!!! Even though the chemo nurses were using heparin, it wouldn't have helped since my own vein blocked the port line. I will know how to explain after my follow up with the vascular surgeon. That is great that your scans are good!! I'm sure it will be nice to get off the IV chemo for awhile. I have heard Xeloda is good for liver mets. I wish you the best on X!
Robin
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Robin,
I correct, it was heparin, thank you! And I wish you the best too. Hope the arm is back to normal soon.
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Z - I am sorry about your struggles with liver mets and challenges with your MO. It sounds to me as if you are not aligned in your views and that you need a doc who will help you more actively fight your disease.
If you are interested in what might signal a change in liver function, in bloodwork, mor e specific indicators might be AST and ALT which are part of a complete metaboloic panel. You would probably have this test if you are getting any IV drugs - to check liver function first.
Its part of my regular blood work and not uncommon. You could ask for it. However, if scans already indicate progression, your doc shouldn't need this to consider treatment.
-Heather
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Friends, I’m starting to turn yellow... how serious is this? Waiting for a scan before starting new treatment but I feel like I’m going to run out of time before then
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Artist - so happy to read stable/improvement!
To all you smart girls on this thread, thank you, I'm learning so much.
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Nina, you need to go to the doctor ASAP...yellow is not good. Hang in there, they will speed up the tests I am sure xxx
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Nina, you need to go to the doctor ASAP...yellow is not good. Hang in there, they will speed up the tests I am sure xxx
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Nina..get to hospital now. Hopefully, your liver can be stablized when you arrive. It is under great stress.
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In regard to PET vs MRI, I was told by the PET tech that there is an attachment that can be added to PET if tumors are small and need to be seen more clearly. He then said " oh, we don't need it for yours, they are big" What!?!? This was back at the beginning, before y 90, it kinda freaked me out of course.
Evidently, there are different types of PET machines. Older versions, updated version, top of the line versions. I was told that there is only one other place that has this top of the line, most updated version in Texas. One is at MDA the other is here at Presbyterian Dallas.
So, after all this conversation, I'm going to ask for that attachment for my December PET. As you know, the August PET showed no uptake, as a result of y90, but I'm getting scared that there were little ones hiding that were not seen.
I have a friend who had y90 with good results, then on next scan there were 20. Yikes. Now, she's at 50 to 80% tumor burden. Sad for her. She doesn't have MBC, she has Metastatic Ocular Melanoma.
When I've had CT without contrast, the radiologist kept saying "Cannot be seen clearly because of no contrast" so, that's out for me. But, I will ask about MRI if there seems to be anything unclear on PET report.
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Grannax - I believe the "attachment" you are looking for is contrast added to the CT.
Nina - yellow is serious. get to the hospital. tells us what they say.
>Z<
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Nina - I hope you went to the hospital. Let us know how you are doing!
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Hi everyone,
I have an appointment November 30th with Dr. Blum at the Texas Oncology- Sammons Cancer Center in Dallas. We will discuss my participation in a phase III trial for TNBC. There's a 50/50 chance I will not receive the trial drug but another chemo instead. That's okay because I'd be taking it without the trial. I won't know if I'm accepted until after this appointment. Overall, I'm doing okay. My emotions are up and down but mostly up. Here is a link to the trial if anyone else is interested.
https://clinicaltrials.gov/ct2/show/NCT02574455?term=NCT02574455&recrs=ab&rank=1
Special thanks to Kaayborg for telling me about the phase I/II part of this trial.
I've had PET scans to my liver but never MRI's. I will mention this to my new oncologist.
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Z I'll have to ask again because that's not what I understood him to say. If it's the contrast then I can't have it. I'll never take iodine again even w pre meds because of what happened during y90. I turned completely red all over but was not told until next procedure. So, I guess I'll have to ask about MRI, too.
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Grannax, I’m very allergic to iodine contrast too. I have never had a contrast with my PET/CTs. The contrast with MRI is not iodine. I can have that contrast. CT can be done without contrast but radiologists are less sure of the results. At least, that has been my experience.
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Has anyone heard from Nina? I am lifting her up in prayer and hope she is okay
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Hello Z, Shetland and ladies - good PET scan! Bone is almost resolved, jaw met is better, right liver met nearly resolved, but new left liver met. ugh So we are planning for Abraxane through Jan 16th (which is just shy of 6 mos on A-train). Next med will either be xeloda or tamoxifen. FYI UCLA onc said that the results of switching to Abemaciclib after Ibrance fail are still a little cloudy. So Abemaciclib is in my arsenal, but not going there just yet. And since bone resolution is going well with Abraxane, X or tamox may be a better. All in all, a one page report is good news. Bummer is yesterday after work I cracked a right rib. Really hurts when I take a deep breath or cough, but had X-rays today (I must be glowing in the dark), and onc said it's not related to cancer and should resolve on its own in a few weeks. My hair is hanging in there, so will continue with cold caps through Jan. Happy dance for all good scans.
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