How are people with liver mets doing?
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I have a new MO. Yipee Her name is Dawn Klemow, MD at UTSW in Dallas. She is a BC specialist. I'm extremely relieved, my appointment is March 25.
I had lots of energy today and got all of my errands accomplished. Being off TX is wonderful. Although it comes with its own set of worries. I'm in my off week of Xeloda so I'm not too worried.
I am curious about what TX she will put me on. It probably depends on my scan results.
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Great news Grannax2!
I have you in my thoughts and prayers grrifff, I hope this is just a setback that will resolve quickly.
My thoughts and prayers also to all who knew Z.
Being fairly new to my liver mets dx and this thread,I have become very aware of the rollercoaster of emotions we are all facing. Some days we laugh and others we cry.
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Hello Karpc
I just had a PET scan to see if my breast cancer met in my 6th rib had posted anywhere else in my body. Everything was clear except for the following note on the report.
A small focus of activity within the tip of RIGHT lobe of liver, whether this presents an early metastic focus or possibly a small hemangioma is uncertain. This is a non-specific finding. CT does show a small area of decreased attenuation which is nonspecific. Consider dedicated MRI examination of liver with contrast”
When your met was discovered - was there language similar to the above. Pretty nervouse about the language. Definitly calling doc to set up MRI.
Any thoughts?
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yes. And I would do that MRI.
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Yes - there was similar language? So PET scan could not determine Mets or hemangioma. Was it determined to be a met at MR
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Hi AMP47. Sorry to hear about your recent PET scan results with a met to your rib. I've had different language used after every scan of my liver (it depends on who is writing the report and the inconsistency drives me bonkers). When the area is very small, it's difficult for them to distinguish if it's a met or not which is why you will usually get an inconclusive report like yours. The only way you will know is to schedule that MRI as ABeautifulSunset wrote. Also, request a biopsy although it may be too small to biopsy if it's under 1 cm. Hopefully you can get an appointment right away. It's so stressful not knowing. ~Kar
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Karpc - sounds like it might be a met. I read your story and have some hope a small met might be treatable? So nervous and scare that my life will be shorten by this new development. Does it make a difference that it is small
Very glad you answered my question.
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AMP, I had one small met on my liver three years ago. Xeloda cleared that up quickly. Had to go off because my bone Mets we're spreading. Now I have numerous ones just come back recently. I believe the right treatment can't knock that out
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Hi ABeautiful Sunset
Thank you for answering so soon.
Did you mean to say “You believe the right treatment can’t or can knock out the liver met? Do You have more bones or liver Mets? I apologize fo being so specific - just trying to settle all these questions I now have.
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oh sorry about that typo. I meant it CAN. I have a friend doing really well on Xeloda. She went from multiple liver Mets to NED, and is still NED.
I have had bone Mets for 8 years. Three years ago I got a spot on my liver, which Xeloda took care of. Nothing in my liver since then... until now. I am also more concerned now than I was when I had only bone wets.
I hope my and your current (or next) treatments do the job. The liver is really good at regeneration too.
Sunset
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Sunset - sooo glad to see that was a typo!
I was diagnois recently with the original diagnois as in 2009 for a 4mm rib bone met through a CT scan two weeks ago. Since that day my life has been days of bad frieghtening news/reports. After 11 years of cancer free worry- now this.
I am on a crash course on verbiage, euphanizms, medication and survival time Statistics. Very glad this site is here for all of us dealing with nasty ever evolving disease. Woman like your self help woman like me get a grip on what happens when it comes back, what medicines will be available the outcome of the medicines used. In your case 8 years later.
You have managed your condition for a long time. When did you know when you had possibly years versus months?
What does NED and MO mean? Look forward to your responses.
Thanks for your help- I am pretty unsettled right now - trying to keep it together 😔 AM
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Grannax, that's fantastic news about your new doctor!
All the best,
Katty
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AMP47, I'm sorry for what you're going through. There's a button on the left underneath the blue list saying 'Help with abbreviations'. I click on that button to find out the meaning of abbreviations.
Here's a link to that abbreviations list: https://community.breastcancer.org/forum/131/topic...
NED - no evidence of disease
MO - medical oncologist
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AMP47- Sorry to meet you under these circumstances, but the support here is a priceless gift.
NED-means "no evidence of disease", also you will see NEAD, or "no evidence of active disease" which is probably a more accurate term.
MO-means "medical oncologist" as opposed to a more specialized oncologist such as hematologist, interventional radiologist, radiation oncologist
It sounds as though you have a very low tumor load, known as "oligometastatic" Oligo is Latin for "few". This is very favorable for years of survival. If what they are seeing is indeed a single liver met, you may be eligible for the Y90 procedure.
Be gentle with yourself, learning of the return of cancer is a significant gut punch. MBC is now treated as a "chronic disease" and you are likely to have many more years to enjoy your life.
Once you get the MRI results and a plan for the immediate future you will feel a lot better. The waiting is the worst; I wish we could get a "forgetter drug" while we wait for stupid test results. Your MO might also draw blood for tumor markers to get more info.
Best, Mary Jane
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Thanks Katysmith. Yes, just two weeks from today I get to meet her. One, of a zillion things that were wrong with my former MO, is already ten times better. Communication. I have a portal, direct email and phone for intake nurse, former had nothing like this. Nurse was kind and efficient. I think this is the right place for me. Happy dance.
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Grannax2, I'm really happy for you. I'm so glad you have a new MO and you can email their office. That is an improvement!
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Thank you Aussie-Cat - found it:)
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Hi Amp47
Just like you I was diagnosed with single met in liver on Jan2019. I also have a chest wall met. So sorry for what you are going through. This is beyond stressful. Just hang in there! Once your doctors offer you the treatment plans you will definitely feel better. We are all on the same boat
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AMP47, I agree with the others that an MRI would be a good idea. I saw similar language in my reports except my liver involvement has always been very large so there is never a question on the PET-CT scan. An MRI is more detailed and better at distinguishing smaller lesions. "Decreased attenuation", which is usually described as "hypoattenuation" and meaning that this area is less dense than standard liver tissue, is how liver mets are described. Liver mets show up as black spots on the CT portion of the PET-CT, slightly darker than the rest of the liver which displays as a grayish shadowy color, although there may be other causes of a less dense area. "Activity" means that there is metabolic uptake that lights up on the portion of the scan - think of a volcano and seeing red lava versus inactive, dormant black lava stone. However, there are other reasons why something might light up on a PET scan - injury or illness, etc. My tonsils light up when I am sick. There are local liver therapies that can be effectively used on one or several mets (and other local therapies that can be used on a person with a lot of mets). Liver mets are scary but there are many great, effective options out there.
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Hello Mary Jane - thank you for all the information on abbreviations. Also, I was unaware of oligometastatic is a condition for years of survival. That is encouraging news. I have been very sad with many “gloom and doom” sessions during my day.
You describe the feeling of this disease return as a “gut punch” accurately. Many many days were as you describe. I had to get an anti-anxiety medication . I have worked on being calm and staying busy which really helps me.
I agree with the “forgetter pill” - made me laugh. I will be glad when the MRI is over. My son-in-law is a radiologist and reads my reports and holds my hand and makes recommendations to move things along-very kind supportive man.
Hugs Annamari
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AMP47, regarding the local therapy that JFL alludes to, while Y90 can be used even for multiple liver mets, I would think a single liver met would be a good candidate for simple focused radiation. In other words, zap that sucker into oblivion.
I recommend not so much reading statistics, and do talk to your oncologist about treating you as oligometastatic. Get a second opinion if you can from an NCCN center. Closest to Oregon would be UCSF or Stanford in CA, or Fred Hutchinson in Seattle. Or at least go to a NCI center or university hospital.
--SP
(Diagnosed almost five years ago with extensive liver mets and currently with no evidence of active disease. Not bragging, just want you to know it is possible to do well even with liver mets. I know it is very scary.)
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SP - thank you for your response. I am definitely going to bring up the radiation with my oncologist. I am unaware of treatment for this new development.
Thank you for all the named cancer center. I will contact the closers ones to where I live.
AMP
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Amp check your private messages. I replied
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Hi
Xeloda (capecitabine) failed me. Been on it since October last year. Mets didn't shrink at all - and now they are growing again. I only have liver mets. Before xeloda I had taxol (failed me - and too many SE) and faslodex/ibrance (didn't work at all) and letrozol (didn't work). So far nothing has really been able to stop my liver mets from growing and be stable.
I'm loosing hope and getting afraid that nothing will work on me as I haven't had any success with anything since diagnosis (May 2017). Liver quite full of "undefined" mets - biggest around 7 cm. They seem to be quite aggressive.Anyone in the same situation - and did you find something to help you? If so, which drug?
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Lisbet,
I have had great success with Gemzar/Carboplatin after two years of drugs that produced modest regression, if any. In the past, Halaven also did a great job.
I hope you find the drug that works for you.
Have you had genomic testing yet? It can help in finding a treatment that fits.
Jennifer
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hi lisbet, I know how you feel. I had a very full liver and Xeloda didn’t work for me. Next switched to abraxane and that didn’t work. I have now done 7 rounds of ac chemo and has brought my tumor markers close to normal range. I scan next week to see how the liver looks.
There are choices yet and look for trials as well.
Sara
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lizbeth,
My friend with extensive liver Mets is on : Aliqopa +Abraxene+ gemzar +zejula
Her tumor marker of 1600 has dropped to 190
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lisbet Have your docs mentioned y90 to you as a possible local treatment for you?
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Lizbet, your liver mets sound a lot like mine. You may want to look into Y90 radioembolization, a local therapy. It can really help one get ahead of the liver mets if you feel like you are always running a step behind the liver mets. Halaven and Doxil are also other options that are pretty tolerable and see good results for decent stretches in some people. There are a lot of new targeted therapies on the horizon. I just started an FGFR inhibitor through an NCI clinical trial in which my cancer center is participating. I did a genetic panel test with Foundation One which identified various actionable alterations (mutations or amplifications), including an FGFR1 amplification. If you haven't done one, it would be a good idea to ask for a liver biopsy/genetic panel from Foundation One or Caris.
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lisbet...how have you actually been feeling? Do you have symptoms apart from what the scans show and they are telling you?
If all those medications haven't worked is it possible that what they are seeing is something other than cancer? Similar situations have been know to happen. the most egregious was when they diagnosed a famous actress with widespread terminal cancer and it turned out to be a fungal infection...she's is still alive and writing books about it today, probably twenty years later...
Let's not forget that nothing is really scientific about our treatments and tests...that's why there's so much confusion....it's all a guessing game...and the orderly throwing of darts on the board...hoping that something will stick.
I truly hope the genetic testing can direct the therapy toward a successful outcome for you and the rest of us.
I'm dreading my upcoming Pet, I'm feeling great, all considered, but that doesn't mean there hasn't been progression for me as well....and I'm not looking forward to the next TX, but what other choices do we actually have?
Actually and gratefully, JFL has just mentioned a few in the above post....
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