How are people with liver mets doing?
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Zarovka and others with widespread liver mets:
Prior to being diagnosed with widespread liver mets, I had extreme difficulty breathing especially during exertion. Pulmonary embolism was ruled out via Xray and CT scan. I eventually ended up in the ER. My MO met me there and along with a pulmonologist they suspected tumor cells had left the liver and traveled into my lung arterioles. The malignant cells were too tiny to be picked up by scans and were blocking arterioles.
The gold standard for diagnosis is lung bx, but I was in respiratory crisis mode, so this was not an option. An older scan called VQ scan was used to verify blockage. I was started on emergency systemic chemo, AC.
I am telling you guys this story in case the info can save someone's life. Tumor Emboli Syndrome is usually diagnosed at autopsy.
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Thank you SandiBeach. I'll keep that one in my pocket.
>Z<
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I feel like i need 2 computers, one to read what you say and one to comment, all info is so precious and i can't remember my comments.
Miao love your parable, couldn't be more true! Is it ignorance or greed?? I guess we all know the answer. Big time money with cancer specifically. So awful. Fingers crossed for great results on your test.
SandiBeach I am getting madder by the minute, Dani had a hard time breathing I the last few weeks, the scan showed pleurisy and a big one at that, why didn't the doc act and send her to get rid of the fluid, I read that could do a number on the heart. I think it did. Can you guys imagine something ridiculous like that, it being something stupid like being callous about getting rid of fluids that could have given her comfort and extend time?? He was scared of sending her to the Hospital that I know.
I just reread the latest scan, CT because she could not stay any longer in the machines (mri/pet) – too much pain, and it points too so much going on. But he was soooo slow to act. The BT was crazy. E/t was so out of control. I'll be straight with you guys, I know that there could have been more intervention, would it just prolong her misery?? The pain was intense, yes, it's not even about should have could have, I know could have!, again my only solace is that she was in her own bed like an angel, but I know If doc would have taken care of the details, she had more of a chance to have more time.Just saying.
JFL – Zar interestingly, Dani was first Her2- then after biopsies she was 2 Onco last year put her on the Clinical trial of IMMU132 which was geared for HER2- but she felt strongly it would benefit her. It didn't. That was till June, then the next 3 months this same Onco pushed Dani to go to MSKCC with the trial for strongly HER2+ DS8201a, yeah, they said "we have gr8 results" but it did not help her. Btw, she has been on Herceptin plus different treatments, I think it was a mistake to get her off Herceptin.The bottom line, it's all a f……. crapshoot. The trial at MSKCC seems interesting, I must say. Just remember, trial people don't have your best interest in mind.
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sandybeach. Wow what a story. A week ago I went to my regular MO appt. I told her about some pain and tightness in my chest. She ordered a VQ to rule out PE. It turned out to be negative and my pain and tightness is worsening reflux probably due to SE of trulicity. But, now i know what she was looking for. I never knew about that syndrom. I had liver mets (treated successfully by y90) and I have lung mets and numerous mets in lymph nodes in my chest near esophagus. I thought/still think that chest mets could be progressing. I won't know for sure about that until May 29 after PET scan.
Thanks for sharing your story.💞
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Sandibeach, thanks for the (scary) info. Good to know and it makes sense that liver mets could travel to that area.
Z, was your serum HER2 test a blood test? There is one in the US although it is not widely used and I am not sure it would align with the Japanese version. I pushed my doctor to do it 11 years ago when I was early stage but it came out negative for me. I was HER+2 then and in my 2017 liver biopsy. The way I understood it was that the FISH has to be equivocal and I was only equivocal in the IHC test. If you are able to score Herceptin, let me know!
I spoke to the trial doctor at MSKCC about the HER2 retest trial today and there are 3 criteria are 1) primary (breast) tumor must have tested HER2 negative, 2) scan within last 4 months must confirm metastasis and HER2 negative finding and 3) original, primary breast biopsy specimen must be available for re-testing to confirm there was no testing error. I am now off to inquire about my 2006 primary tumor biopsy! I hope there is something left. That requirement cannot be waived (I asked). The doctor said it involves 2 visits. Visit 1 = see MO to get in MSKCC system, sign consent in person and receive PET formulation (some sort of Herceptin with contrast); visit 2 = 5-6 days later, the actual PET scan is performed.0 -
To all. I’ve been reading but not posting. My dd is here and I’m staying with her to help with the baby. Between work and sweet Anton I’m so wiped out. It’s crazy!!!!
Animal crackers. We’re all so happy to hear goid news from any of our BC sisters. It spurs us on and gives us so much hope. Never think otherwise.
JFL I’ve been asked to be part of the trial at MSKCC. My only issue is that it might require another biopsy and I’m not sure I’d like to do another. But if it comes to that I can always say I changed my mind.
I had an mri 10 days ago and there’s been increased bone mets. I had. Ct scan last week and no results yet. Since I’m leaving for Paris on 5/8 I’m hoping for no bad news before I go. For once I’d like to be an ostrich and put my head in the sand!
Sending all my bc sisters hugs. I know some of you are going through hard times. I’m praying for you!
Babs
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Babs, I know you are enjoying every moment with your precious grandson, Anton. It is wonderful that you are able to spend so much time with him. I am sorry that your bone scan shows some increase in mets. Dang! I hope your CT scan gives you better news. How are you feeling other than wiped out? If I had your current schedule, I would probably be found sleeping at work. Let us know when you receive the results of the CT scan. I am lifting you up in prayers
Hugs and prayers from, Lynne
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(Cross-posted from another thread, but want to get the mention of the DS-8201a Phase II trial out for other liver metsters.)
It's been six weeks since my progression scan results. They've been tough weeks for me and my husband, and probably for family and friends as well. It's scary being off treatment when you know you have an aggressive cancer.
I have been accepted into the DS-8201a Phase II trial. I'm excited to be in the trial, because the drug has been pretty successful for people with my treatment history and pathology. I probably won't get my first infusion until May 15th, 9 weeks from when I stopped Xeloda and Tykerb and almost 7 months since my last progression-free scan. I'm hoping the fact that I'm not dead yet means the cancer is somewhat less aggressive at this point than they thought it might be.
Next week, I go for all my baseline scans. I'm not nervous about the process, but I am steeling myself for unpleasant results. We will be using CT scans rather than PET scans, so I know the measurement variables will be entirely different and more precise for my mets in lungs, liver, and lymph nodes. Nine weeks off treatment almost certainly means progression. I'm going to have another brain scan, which has me a little nervous. My last one was in May 2017 and showed no mets, but that was before the mets were detected elsewhere.
I'm still pretty much symptom-free. I notice various physical changes, but can easily attribute them to things other than cancer. I'm tired and sleeping more than I usually do, and I seem to have a cold that won't quit. Cold medicine helps the cough and rough breathing, so I figure either Vicks has a cure for cancer that they haven't recognized yet or it really is just a cold and not dramatic progression in my lungs.
At this point I am focused on finishing out the semester (I'm a college prof) and getting ready for treatment. The trial site is an 8-hour drive from home, and I'll have to be there for three or four days out of each of the first 5 to 6 weeks. After that, treatment is just every third week. I've tried to get my work colleaguesprepared for me being on a wacky schedule or unavailable in the fall semester, but it's hard to know what to say to them. I look and seem healthy. They know about my diagnosis, prognosis, and treatment plan and have been very supportive so far, but I hate to leave them in a lurch. On the other hand, I may be feeling great by September and be able to work almost full-time. The uncertainty is frustrating, so I find myself focusing more on today.
Thanks for the support here. I post rarely, because my case is unusual in that I am in the small group of nonresponders to HER2 directed therapies, so I don't know that my experience is very helpful for others. I read every day, and you all help motivate me to get out there and liv my life, whatever that means for that day.
S
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Snowfall, you are amazing and one tough cookie!! Dealing with all of this and still teaching college classes and concerned about not leaving a load for your collegues. Amazing... Best of luck in that trial, please report back often!!!
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Snowfall - I appreciate your detailed post. DS-8201a looks promising ... "In patients with breast cancer, the overall response rate (ORR) in patients receiving the Part 2 doses was 42.2% and the disease control rate was 97.8%. Among patients with prior T-DM1, the ORR was 45.7% and the DCR was 100%, and in those with prior T-DM1 plus pertuzumab, the corresponding rates were 46.7% and 100%, respectively."
I have my fingers crossed I am HER2+. The progress with those types of tumors is amazing. Watching your experience closely, expecting the best when we hear back from you. Hope it is soon.
>Z<
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Snowfall my DD had this trial phase I at MSKCC, it did not help her. I do have to ask you, why would they put you on a trial if you tried so few treatments. I know the trial people were happy she had been on TDM1 already like yourself, they said this was like a stronger TDM1. For instance Tykerb could have been taken with Herceptin. Xeloda with Herceptin. How come this was not done in your case. What basis was treatments changed in your case, scans were always showing progression? Dani had those treatments with Herceptin, as a matter of fact I think when they started her on 2 consecutive trials with no Herceptin(of course), that's one of the reasons things started really going haywire, and also the fact of the long wait with no treatments. Im sorry I don't want to worry you,but it's the truth. Im not sure for people (as Dani) with aggressive cancers waiting for trials, is such a good thing. And the brain mets, she had to get an outside RO to do it, because they were not concerned with that. Their goal did not include, did NOT CARE what her brain was doing. To be sure, Im not sure WHEN it's a good idea for trials, but in her case it messed her up. If Onco is telling you that they can't target your HER2+ this trial targets exactly that, so maybe you could ask them why do they think this is the right answer. As we've all learned maybe you have more than one type of HER2...
Babs how wonderful to hear how busy you are with Anton, good for you. Scan shmam you ARE in control. Anton time it is.
JFL what's the name of that trial? I hope you get a hold of the original biopsy. How could they expect people to have biopsies from so long ago? Happens to be that i have Dani's biopsies, i made sure to get it, they made me sign that Im responsible for it, and the liver biopsy I also made sure to get it right after it was done, it's not easy but I thought i should tryYou gotta get the right ppl on the other end to cooperate. Good luck.
Kayyborg I hope you are coming along, it's tough in the beginning that's for sure.
Zar you feel the love right???
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Yes, Mom. I feel the love. Z
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MomATT, I appreciate you sharing Dani's experience. I followed her excruciating treatment history and have no words to describe how sorry I am that she and you and her family went through all of that. I hear you about the risks associated with trials.
I have tried six different chemos, and they've all had virtually no effect, other than TDM1, which worked for three cycles. All of the treatment changes were made after progression measurable in scans. I had herceptin for more than 6 months, and it was not effective, at least not to the degree that it usually is in people with HER2 positive cancer. Tykerb, which targets HER2 positive cancers, was also not effective. In short, I am the person on the unlucky side of all the statistics. This is probably more than a matter of luck. There is probably something about my cancer that makes it resistant to the treatments that have been successful for so many.
Standard of care would be to try herceptin, which has already not worked, with other kinds of chemo that are in the same classes as the chemos that have already failed. My doctors would be very happy to follow that route if I wanted to, but they agree with me that it doesn't seem that current standard-of-care chemos are going to be my answer.
Two other routes were suggested, both involving trials. One is for DS-8201a, the other is to see if there are any immunotherapy options at somewhere like Dana Farber.
I am wary of trials, largely because many of them seem interruptive of daily life. I understand that I am not likely to live into my 80s (I'm currently in my 50s). That said, I would like the life I have to be as much as possible about doing the work I think is important and spending time with the people I love. I am not willing to let my medical treatment become my primary activity. Others might choose differently, but that's just me. That means I have limited willingness for medical travel, etc. The DS-8201a trial is reasonably convenient and overlaps with my real life in positive ways. They also report fairly impressive results. They scan every six weeks, so I should have a pretty good idea of how and where the treatment is or is not working. We are also hoping that because I had a positive if limited response to TDM1, a similar kind of treatment might be effective. Between the convenience and the possibility of good results, I'm willing to allow the trial into my life.
So that's where I'm coming from. I would love for this drug to be the silver bullet I need to get this cancer stable or in remission. There are no promises, but the other available treatment options don't seem likely to be successful, so I'm willing to give it a try.
Fingers crossed and prayer beads rattling!
S
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Thank you, Cure-ious and Z. I will definitely keep this thread posted on how the trial unfolds. I appreciate the encouragement. Some days are hard! (she says, preaching to the choir...)
S
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snowfall: praying that this trial is the silver bullet for you.
Everyone is in my prayers! Hugs to all
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Hi. Shetlandpony started the following thread to give her and others with ER+PR- liver mets some hope.
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So I went to Columbus and had a second opinion at the Stephanie Speilman Breast Cancer Center. I loved my oncologist. She is young and a huge problem solver. She is not on board with some of the treatments I have had and wants me to get a liver biopsy down there to see if I am really Her2+ or not. She has a plan-Kadcyla? If I am. Until then I am doing doxil. I had my first treatment yesterday. I don't know when to expect side effects. I just hope it kicks those liver mets back. I don't know how good this chemo is. Anyone? I feel like I am running out of options. I know i keep saying that-but abraxane didn't work. Herceptin and Perjeta didn't work....I don't know. I want to go back to teaching in the fall, but it is so hard to think that far ahead. I asked my radiologist if I could ever get to ned. That was a blow to the gut.
I pray and think about all you strong ladies daily. This board is so helpful. Blessing and sister love to all.
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Lisa - Hallafrickin Luja!!!!!!!!! I switched MOs last month and I have a tenuous hope I can trust this guy. If I hadn't been through what I've been through I would say this guy walks on water, but I am pretty beat up so it's hard for me trust him. My previous attitude was all MOs suck so it doesn't matter what MO you have. I think I am moving towards the opinion that the right MO can transform the course of the disease. I am hoping/expecting that is the case for you.
Snowfall - I have a clear vision of you on a working treatment, in good health, teaching in the fall.
>Z<
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JFL, Do you have the trial number for the HER 2 retest trial?
I met with some researchers yesterday who are doing research on CTC for clinical use, and a potential drug called DipG which can help overcome resistance to hormone positive breast cancer......and an FYI.....My original tumor was 10 years ago. I knew it would be destroyed after 10 years which is protocol in most hospitals, and I was able to have it sent to these researchers....whew....just in time. It was literally weeks before it would have been incinerated.
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Brain scan results back. "Probable meningioma in the left far medial middle cranial fossa. A dural metastasis is also a possibility." Whatever it is the thing is not small ..1.9 x 1.8 x 1.5 cm. At least there is only one and it is near the surface, so zapping it with radiation is doable.
Meningioma is a benign slow growing lesion often associated with breast cancer. A duralmetastasis is the cancerous beast that I don't want. So maybe I have a brain met, but probably not? Thanks a lot. One would expect more from an $8K diagnostic test. I guess more testing will be required. Maybe a biopsy?
Assuming the best for the moment and jumping back on De Nile. A lot to do today so I'll wait until MO calls in a panic before I freak out. I have an appointment in a week.
If anyone has experience with this, I would love to hear it.
Z
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Z no words, just prayers for defitive reading of your scan. 😧
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Z that's just not fair, you gotta get a break sweetie. Dani had a dural met, it matters how much is pushing int the dura etc...she had Gamma knife, very precise rad, it helped. No biopsy was ever done from the brain, why do you think you need a biopsy? The area is one place you don't want to mess around if you don't have to.
snowfall definitely sending my prayers your way, and all fingers and toes crossed.
lisa how wonderful you got a real Human being caring for you now!!! that's the way to go.
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Z- that is very scary. And, yes, it can be hard to determine exactly where (the level) the lesion might be. Mara on brain mets sisters is very knowledgeable and calming. Lita has good insight also. Try to stay calm and find out you options.
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Z, I am so sorry to hear about your scan news. I hate this disease. It makes me angry. Were you having symptoms that lead to the scan? De Nial is a good place to stay. Hoping for the best with your results.
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Z— I'm terribly saddened and worried by the news. Hopefully it will turn out to be a benign meningioma. You are in my heart, mind, and most of all in my prayers.
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Z, It's not a brain met- not sure how I know, but its just not. I've had spots and lumps all over the place they find, ovaries removed because of spots etc, was not cancer. It's not always cancer.
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Z, let's hope it is just a meningioma. I am a member of the cracked coconut club due to a meningioma. I actually found the BC due to this brain tumor. The most important thing to remember is location, location, location. There are options.
I know this new spot is worrisome. Yes, it really sucks with all you are already dealing with. Just keep hanging as we are all here rooting for you to stay strong and continue making each day the best day you can make it.
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lisajo I have Kadclya, first with Zometa, plus herceptin. Now kadclya plus herceptin with Xgvega. Working well now for 18 months.
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z continue on your current treatment and kill all metastatic disease in your body. I hope you have stopped fasting and are eating healthy food. I believe the less tumor burden, the less chance of mutation. Have you had had breast surgery (not even a thing on the table right now for sure? What is going on there just wondering? You can deal with a meningioma, meh whatever! Not your story! Remember wellness, meditate and visualize the future you want. Your body is amazing! You have been my rock and support! Progression is not an option! Your family needs you and you deserve a healthy future! If there is any doubt, zap the brain lump! Thinking of you and I am grateful you are here and present in many conversations. I am simplifying all the mindful crap but you might as well do it all
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Z why did they do the brain MRI? Were you having headaches or diziness? Thinking of you. Praying for best info to help you to the next step.💞
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