How are people with liver mets doing?
Comments
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Princess - The urine test strips I mentioned cover a lot of ground and may help you figure out what is going on with your pee. You might consider going to a good primary care physician. Although possibly cancer related, oncologists don't always care to look into this stuff.
Max - Did MO give any rational for why Doxil would not work? Or Abemaciclib for that matter? My quick thought is TACE or Y90, if your cancer is primarily in your liver. These are local treatments for liver mets. They make sense if your cancer is primarily in the liver ... is that the case? There is a thread dedicated to these treatments. MO's are oddly unaware of the role of these strategies in cancer treatment. Skip the MO. Get an appointment with an excellent Interventional Radiologist ASAP, if your mets are primarily in the liver.
Cure-ious - Long day. Will dive into article tomorrow. THANK YOU.
>Z<
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JFL. I am one who saw Doxil and immediately thought it must be the red devil. I took the red devil for my first DX way back in the dark ages of 1992. I was told I have had my lifetime maximum of that drug. So, would Doxil still be an option for me down the road? Actually, I did better than most people on A, I continued to work and was only nauseous the whole time but not vomiting much.
Cure ious I could hardly understand the summary of the article. Sound like some futuristic solution for all cancers. But, I will read it. My brain might blow up but I'll try.
I've been able to communicate some with my MO by email but still don't have the answers to my questions. My next appointment is April 19 and I plan on getting a response much sooner than that. Therefore, I'm still concerned that my F1 report is being ignored by my MO in regard to ESR1 and my second line of treatment. At least I know that she understands me better and does not seem defensive about my questions. Ill push a little harder next week for answers.💞
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Z,
Lung mets are stable, it’s the liver that my issue. My mri has been sent to NCI center to an IR.
On these small lesions, the probability is that TACE or Y90 will not work. I am seeing two
MO’s at top university’s , one is a NCI in Chicago. I should hear soon what he IR has to say. Are you still progressing in the liver?
Kathy
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All my progression is in the liver. I have innumerable mets of varying sizes. I looked at my MRI last week, and I don't see any liver any more, at least on the slice they had pulled up.
I haven't heard of mets too small for local treatment to work. Ablation, perhaps, is constrained in this way? However, there are multiple local liver treatments and sometimes people thing local treatment of liver mets = ablation. Ablation is when you fry the bad boys with a hot needle. Obviously not the way to go for 30 small mets.
Ask specifically about TACE and Y90... and report back please. Many people would appreciate it if you would post your experience ... your diagnosis and the local treatment options you are given (and denied) on the thread where this topic is discussed. It is a complex space where, it seems, a lot of patient proactivity is required to get the medical team moving in the right direction ... even at an NCI center.
I went to the Mayo clinic (Best Hospital in the Country !?!?) as was not offered TACE by the "world class" MO when it's a completely obvious option to consider in my case.
>Z<
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file:///Users/Lisa/Downloads/MyChart%20-%20Test%20Details.html
This is my pet scan from January. I started abraxane and herceptin in February. This is the first time I looked at it. I am devastated. I don't even know what half of it means.
Impression
IMPRESSION:
1. NECK: No FDG avid neoplastic process. No hypermetabolic mass,
adenopathy, or fluid collection.
2. CHEST: Progression of hypermetabolic thoracic lymphadenopathy. No
hypermetabolic mass or fluid collection.
3. ABDOMEN/PELVIS: New hypermetabolic hepatic metastases. New
hypermetabolic abdominal lymphadenopathy. New hypermetabolic peritoneal
implant.
4. EXTREMITIES/SKELETON: Progression of hypermetabolic
osseous metastatic disease.
Transcribe Date/Time: Jan 26 2018 2:36P
Dictated by: DONALD NEUMANN, MD
This examination was interpreted and the report reviewed and
electronically signed by:
DONALD NEUMANN, MD on Jan 26 2018 3:08PM EST
Thank you for allowing us to participate in the care of your patient.
Should there be any questions regarding this interpretation, please call
419-626-9090.
If you are unable to reach us at the number above,
please feel free to contact Cleveland Clinic eRadiology at 866-328-6380.Narrative
* * *Final Report* * *
DATE OF EXAM: Jan 26 2018 2:31PM
NRN 0063 - NM PET/CT SKULL-THIGH SUBQ / ACCESSION # 107016387
PROCEDURE REASON: multiple diagnoses
* * * * Physician Interpretation * * * *
RESULT: EXAMINATION: REGIONAL BODY FDG PET/CT SCAN: (1/26/2018 2:36 PM)
HISTORY: 61 year old Female with Malignant neoplasm of unspecified site
of right female breast.
INDICATION: Study performed for subsequent treatment strategy.
TECHNIQUE: F18-FDG administered IV was followed about 60 minutes later by
PET imaging from eyes to proximal thighs. Free breathing low dose CT was
performed without contrast for attenuation correction and anatomic
localization.
Blood glucose before FDG injection: 134 mg/dL
FDG radionuclide dose: 12 mCi
CT Dose-Length Product (DLP): 473 mGy*cm.
COMPARISON: FDG PET/CT dated 2/28/2017
CORRELATION: None.
RESULT:
NECK:
Physiologic FDG uptake seen in the visualized brain, parapharyngeal soft
tissues, base of tongue, vocal cords, and salivary glands.
No hypermetabolic cervical lymphadenopathy or masses. No focal
hypermetabolic thyroid lesion.
CHEST:
Physiologic FDG uptake in the heart and mediastinum.
Lungs and tracheobronchial tree: No hypermetabolic consolidation, mass
or nodules.
Pleura: No hypermetabolic pleural or pericardial effusion, or pleural
mass.
Mediastinum and Lymph nodes: Several new sites of hypermetabolic
lymphadenopathy are seen, including the upper right paratracheal (maximum
SUV 11.7), left subpectoral (maximum SUV 2.6), and a 2.7 x 2.1 cm left
axillary lymph node (maximum SUV 13.7).
There has been interval resolution of the previously seen hypermetabolic
lower right paratracheal adenopathy.
Chest wall: Status post right mastectomy with flap reconstruction and
right axillary lymph node dissection.
ABDOMEN AND PELVIS:
Physiologic FDG uptake seen in the GU and GI tracts.
Liver: Multiple new intensely FDG avid lesions are seen throughout the
liver, compatible with hypermetabolic hepatic metastases. For example:
- 4.0 x 3.9 cm FDG focus in the lateral segment of the left hepatic lobe
(maximum SUV 16.1, slice position 325),
- 5.2 x 4.3 cm FDG focus in the anterior segment of the right hepatic
lobe (maximum SUV 12.8, slice position 342), and
- 3.3 x 3.0 cm FDG focus in the right hepatic lobe inferiorly (maximum
SUV 11.6, slice position 395).
Biliary: No bile duct dilation.
Spleen: No mass. No splenomegaly.
Pancreas: No mass or duct dilation.
Adrenals: No mass.
Kidneys: No stones, hydronephrosis, or hypermetabolic lesions.
GI tract: No dilation or wall thickening.
Lymph nodes: New hypermetabolic lymphadenopathy is seen, including the
periportal (maximum SUV 8.7), portacaval (maximum SUV 8.6), aortocaval
(maximum SUV 5.9), left para-aortic (maximum SUV 10.6), and left common
iliac regions (maximum SUV 8.6).
Mesentery/Peritoneum: There is a new FDG avid 9 x 7 mm soft tissue nodule
in the left upper pelvis (maximum SUV 2.6, slice position 524),
compatible with hypermetabolic peritoneal implant.
Vasculature: Vascular patency cannot be assessed due to lack of IV
contrast.
BONES AND EXTREMITIES:
There has been an interval increase in FDG avidity by the sclerotic
lesion of the upper sternal body (maximum SUV 4.5, previously 2.5).
Multiple new hypermetabolic osseous lesions are seen, including the right
humeral head (maximum SUV 5.9), left acromion (maximum SUV 3.7), multiple
thoracic vertebrae (for example maximum SUV 5.6 associated with T3
vertebral body), multiple lumbar vertebrae, sacral body (maximum SUV
4.8), several additional sites in the bony pelvis, and both proximal
femora. These findings are compatible with progression of hypermetabolic
osseous metastatic disease.
======Component Results
There is no component information for this result.
General Information
Collected:01/26/2018 2:31 PM
Resulted:01/26/2018 3:10 PM
Ordered By:Brian R Murphy, MD
Result Status:Final result
This test result has been released by an automatic process.
Home | Site Map | Terms & Conditions | Contact Us | Log Out MyChart® licensed from Epic Systems Corporation, © 1999-2018. Patents pending. 580 -
Max otto, I am flabbergasted by your MO's outlook. I am heavily pretreated, with a liver full of mets - more than 30 small mets on my end - and everyone's outlook seems positive. My MO suggested Doxil, Halaven, an FGFR1 trial or possibly Abemaciclib. I am doing Y90 in 2 weeks. My MO first said no to Y90 but then did more research and came around to support it 3-6 months later after educating himself and speaking to some others who have done it. Don't expect any MO, even a top MO, to know the latest on Y90 use in BC. They don't. It is too cutting edge. The interventional radiologist at my hospital also said no as well because he said I have done too many chemos and my liver is compromised (despite having normal liver enzymes and bilirubin). He does Y90 but is also not up to speed on its cutting edge use in BC. IRs know Y90 from colon or liver cancer. Those diseases have many less chemo options and the few they have beat up the liver. Thus, the analysis for those cancers is different and IRs try to analyze breast cancer through the colon/liver cancer lens which is inaccurate. I then found one of the best experts in the country and he said I am an ideal candidate. I have large tumors plus diffuse mets throughout my liver and he said treating my diffuse mets is not a problem at all. If I were you, I would get a new MO immediately. You don't need someone who has given up on you - when you (and your liver) are functioning very well and are no where near ready to give up on yourself. One wonders if your MO would have advised his/her own spouse to throw in the towel. Ridiculous.
Our bodies only need 10% of our liver to function and the liver regenerates itself. In 2016, nearly my entire left lobe was BC mets - barely any liver tissue - and the right lobe was over 50% BC. Despite that, my liver enzymes, bilirubin and everything else were in normal range, I was working full time, raising a 1 year old and running 4 miles 3 times per week and felt fine. Since then, my left lobe has completely regenerated and only has a 1.3cm lesion and some small lesions and is predominantly liver tissue again.
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Lisa, PET results can be scary. I have had some scary ones myself. However, you have been having an excellent response on Abraxane (based on your plummeting tumor markers)since that PET was taken, which is awesome. Don’t lose site of that.
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JFL- "One wonders if your MO would have advised his/her own spouse to throw in the towel." One wonders indeed. The primary toxicity in that situation may be the MO.
>Z<
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Well. I have been on abraxane and my tumor markers sent up over 70 points to 232. I guess it is not working. I have been on an antibiotic for a sinus infection. I doubt that would make them rise. So I guess the abraxane is not working. I am at work trying to hold it together.
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Lisa,
Your tumor markers are not that high, wait until scan is repeated for a comparison and talk to your doctor about this report, bring someone with you if you feel overwhelmed, support is very important, especially now.
I understand how you feel as I received a unexpected diagnosis in which I must make some decisions.
JFL,
I will pm you, thanks for responding.
Kathy
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Lisa, Illness can definitely make your TMs rise.
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It has been over 4 years since I joined breastcancer.org for my wife. Initially a member of non-MBC boards and then around March 2016, joined bone mets thread. From then onwards nothing really worked for her for too long and mets spread from bones to liver to peritoneal and then to kidneys. Earlier this month she was diagnosed with Leptomeningeal metastasis.
I am afraid this is the end of the road for her. We tried chemo which did not do anything. Now she is too sick to take any more treatment. Our family and the doctors took a decision jointly to stop all treatment and instead doncomfort care. My wife is barely conscious and unable to speak or recognize anybody.
Throughout my stay here at the MBC board I have met one courageous lady after another. I have seen many succumb to their disease and many continue to fight on with new hope and optimism. My hats off to this unspoken legion of soldiers that deserve way more credit for their fight than what they get.
I will continue to monitor this board and participate even after my wife passes. We have a 11 year old daughter.
I want to do something about this dreaded disease. I want to see that fundamental research is done with cancer care for finding a cure. I find it a sorry state of affairs for drug companies to spend billions of dollars to come out with treatment that extend life for a few months, potentially bankrupt families payingfor it and when things fail, no one has any clues about why it failed. I strongly believe it is possible to find a cure and want to contribute in that effort. Humans have solved far more complex and abstract problems that defy common sense compared to a visible enemy like cancer. We just need the right focus and investment in the right areas.
My wife's name is Ranjita.
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letmywifelive,
I am so sad and sorry to hear about the progression of Ranjita's disease. I have followed your posts and have been impressed with your love, dedication, and support for your wife. I am praying for peace and comfort for Ranjita, for you, and for your daughter. I know this is a painful, difficult time for you.
We all understand and share the frustration you feel for the lack of cure for MBC. I hope progress is made soon. I have seen too much pain and too many losses on these boards.
You and your family will remain in my thoughts and prayers.
Hugs and prayers from, Lynne
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My heart goes out to you and your wife. MBC is a horrid disease and should have a cure by now. God bless your family.
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I’m so sorry to hear about your wife. This terrible disease has taken way too many of us. We all hope for a cure, for better treatments that don’t bankrupt families and for more awareness. I am praying for your family
Bab
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Letmywifelive- Sending you kind thoughts and prayers during this very difficult time. I’m so sorry that Ranjta’s treatments have failed you all. Your support for her is amazing and Your contributions to these threads have helped many of us. Thank you for showing how a caring spouse can be strong for his wife and child. Wishing you all peace in the days ahead. She must be a very special lady
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Letmywifelive, thank you for spending time here with us on these threads. I am saddened to hear about Ranjita's circumstances and am thinking of her, your daughter and you. In my heart of hearts, I believe the cure for cancer will end of being something relatively simple, something that may be kicking around today but not getting the attention it deserves.
Lisa, I am sorry for the mixup in my last post re: markers. Regardless, I agree with the others that illness can make markers rise and you should hold out any judgment until you have your next scan. Thinking of you and sorry to hear your day has been so tough.
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LMWL -
My heart goes out to Ranjita, and you, and your daughter and everyone who knows Ranjita. Your love for your wife comes through in every post. She is very lucky to have you by her side. However distant she seems, she knows you are by her side. I am devastated to read your post.
I am sad today, can't shake it. Ranijita and everyone we've lost, everyone in transition looking forward and dismayed by the real options. I am one of the later today. What I feel I need and my real options in NM are quite distinct sets. Not sure I can travel for treatment much more.
Our conversations have meant so much to me, LMWL. Your words often come to me when I am dealing with bad options. I can't take that conversation with anyone unless they've been there, as we have been, as we are.
Thank you so much for writing us.
>Z<
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LMWL, thank you for using your precious family time to update us on Ranjita. Because of you, I know this disease is horrible on our spouses and caretakers. You can't fix it and there is so much frustration and suffering. You are a good man and I can tell from your posts, that you will always be there for your daughter. That is what any mom with this awful cancer would wish. I will be thinking of you.
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I have trouble posting when I learn of such sad news but LMWL, please know my heart and prayers are with you and your daughter. You have always been an amazing support to all. Be in touch and let us support you in whatever way we can.
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Artist , you also have me so worried. Thinking and praying for you and hoping to hear from you soon. Much love.
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letmywifelive - I am so sad reading your post and send my love and compassion to you, Ranjita and your daughter.0
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LMWL, Thank you for updating us on Ranjita's disease. You have been a great husband advocating for her on these boards. You, Ranjita, and your daughter are in my prayers. Please come back to the boards so we can help you in this difficult time, as I know you have helped so many here.
May God wrap his loving arms around your family during this difficult time.
Much Love,
Robin
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LMWL- thinking of you just now. Holding Ranjita, you, and your precious daughter in the light.
Best, MJH
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LMWL - I don't post often, but read often, and your posts have helped me a great deal. I am so saddened about this news. I'm sure knowing how supportive and strong you are has given Ranjita great comfort and peace. I'm praying that your family has strength during this very difficult time. 🙏🏻
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Z. I can feel your sadness today through your words, especially when you said that you don't know if you'll be able to travel. Those words hit me hard. You must be feeling really bad these days. Yes, bad options are the pits. Who wants second best or standard protocol when you know it's not the best for you? In this day of personalized TX, why can't it be in NM? Or Dallas? Crazy.
On a lighter note, I've been reading a novel called LosAlamos. It takes place in 1945 on the Hill, as they called it back in that time frame. It is based on fact about the scientists who were there making the "gadget". It's a serious subject but the history in your city is fascinating. I actually saw it when I lived in Albuquerque in 1963. I do remember how beautiful it is in your area.💞
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Z, I am also trying to cheer you. You have been supportive for everybody on this site; advising, sharing your research and trial info, starting new topics and never forgetting anyone who needs words of encouragement. Now we need to support you. My DH and I are traveling this summer in our little teardrop. New Mexico is on my list. Because of you, touring this state has peaked my interest. Thank you for everything..now go kill those liver mets.
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LMWL - there is a profound sorrow around the boards today after hearing this news of Ranjita’s condition. I can barely type. Ever since I first saw your user name I was so touched by that loving plea. As someone else wrote, she knows you are there with her. Sending you love and strength.
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Hi fellow metsters concerned about Artistatheart. I have no news but wanted to let you know that I reached out to the mods to see if they could find anything out. Perhaps some of you have done the same. I was disappointed that they can only private message her no different from us. But I realize it is a complicated situation.
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LMWL,
There are tears and sadness for your family as I post, you have been a great advocate for Ranjita. You have succinctly expressesed many of the issues we must face day to day. For me, you are what a “hero" is, a loving and supportive spouse.
Kathy
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