How are people with liver mets doing?
Comments
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LaLady and Artist- Thanks for the reminder about Affnitor- isn't it time to ditch that protocol?! I am amazed at how well both of you are coping with problems right now.
I am like Pat, who doesn't look up her scan results and just waits to hear about them at the next appointment, I also have never been able to actually look at my scans either (too real), so I do rely on the oncologist and radiologist to be competent. But that is pretty much all I count on them for- I don't follow tumor markers and haven't had any genetic testing. Upon progression I will take charge, I have more options playing around in my head than they do. My oncologist only recommends scans in response to new symptoms, because as she says its all palliative anyway. I disagree, but anyway I have pretty low expectations for MOs, if they just tell me my scan reports and write the scripts.
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Cure-ious, the only thought about relying on MO to give you results is they often don't review the report with the same level of detail. More of - is the sky falling? No? Okay, then. I didn't read my very first Stage 4 PET/CT after I was diagnosed (I didn't have the stomach for it) and spent the first 6 months or so of my dx believing I had 3 small lesions in my liver. When I finally read the report later down the road, I almost passed out when it said I had innumerable, diffuse, poorly differentiated, confluent mets, the largest being 6 or 7 cm in one lobe and 5 cm in the other. Since that point, I read everything. I was much more lax about my liver mets when I thought only had 3 small lesions.
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JFL- Honestly, there have been SO many stories here of badly interpreted or communicated reports that clearly this is the way to go- what did your ONC have to say when you pointed out the failure to communicate such critical information?! (well, they may not view innumerable mets as being very different from just three, in terms of the treatment regimen..). There are probably more people like me than those who want to see the scans, which makes it that much easier on them. So, yeah, I'm going to have to 'woman up' and take a look at the reports and scans, now I'm wondering what's really in there! The one useful thing about this approach is that I have no scanxiety, since I am the one requesting the scans.
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Bluebird. Are you saying that your MO believes that all of your TX has been ineffective? Including Ibrance and femara? That's scary. Did you have any response from IF? Does he think IF is not effective on anyone or just your tumors? He must be an "outside the box" type of MO. What does AA combo mean?
I hope you do well on it.
Emily Louise Have you had your CT and gone to see your MO? I'm interested in hearing what the results are. I hope your numbers are better.
Z. What is that treatment? Never heard of it. How does it work?
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Regarding reviewing ALL reports yourself — it is very important. I think the doctors just scan them for high level info. On looking at my original liver biopsy my MO said I was triple negative which was a change from ER+/HER2- in the original tumor. I took the report home and compared it line by line with the 2007 report. There was a period in the sentences with the results that changed the meaning from TN to ER+/HER-. My MO told me that when she presented my case to the tumor board several others missed the period. I told here that the report should have been clearer. A list rather than a narrative.
I have a graphic that I use to keep track of the size of my 4 large tumors. The CT reports are usually a little confusing so it helps me to have a visual.0 -
You MUST read the reports but unfortunately it is not enough to read the reports. I think you need to find a radiologist who will sit down and go over the images with you. The things that have been left out of the reports. Mama Mia. If you haven't been doing that, I would strongly suggest hiring a second opinion radiologist to go over the entire scan history with you. I promise you it will be an education.
I've also made a graphic/graph showing treatments and response to treatments for doctors. I generally find when I drill in with discussion that the oncs are not following my treatment history correctly even though it is very simple relative to many people here. The graph helps and exploratory questioning helps.
Port is in. I got my favorite IR and he said that he doesn't like to do arm ports because the tube they have to use is smaller and longer. Susceptible to clotting. He promises me that he put it in a great location and everything will be fine. In any case I am hopeful I won't really need it after April so I can take it out then if it is bothering me. But I hope it doesn't bother me and I can keep it in for years, as the promised me I can. Even the best nurses who have been awesome in the past are having trouble finding my veins this path month.
I am wondering if I am dehydrated from all this hot yoga. I drink a lot but still my veins are suddenly unavailable.
Sitting in bed with an ice pack on my wounds and sleeping kitties at my feet. Not bad. Kinda enjoy the fentanyl. Ready to sign up for my bone biopsy because the procedures are not bad. It's all being done at the same facility that does scans, interventional radiology and port placement. I've asked to if I could get frequent flyer miles but they have not considered a loyalty program.
>Z<
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Z: my port is in my chest and does not bother me at all after it healed
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Cure-ious, yes I think they need to ditch Affintor! However I've read from a few women here that liked it and it worked for awhile so I guess again it is just personal experience. Don't want to scare anyone away from a protocol that may do well. I am coping with the problems but have been fairly inactive for awhile. Hope to get back to MOVING a lot more with these new meds.
Z, Very good point about the stuff they leave out of sports. I have found on mine that the peritoneal mets progressed from my last scan but were somewhat downplayed in office. I could tell just by the way I was feeling that they were progressing.
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Port install update. Pain killers wearing off. I had a busy afternoon planed but I will continue lying in bed with cats, an ice pack and Advil. Liver biopsies were actually easier. I really had to remind myself to take it easy with the biopsies.
That said, I am not really uncomfortable as long as I take it easy. PM hike cancelled.
>Z<
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Z I'm in bed with my kitty, too. And I didn't have a port placed today! A little R and R for you today and tomorrow.
My good friend owns a medical transcription company. I would never NOT have a copy of my reports. She has told me for years how many mistakes are made. Now, with so many Dr.'s using word recognition programs, it's much worse. She, and all the transcriptionists she hires, listen to the doctor as he transcribes. Then she does QA to make sure it's correct. It takes that kind of integrity to make our reports accurate. Needless to say, that dedication is not the norm. We have to be vigilant.
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Z & Grannax2, I had 2 units of blood today, so I am in my bed with my puppy love! The trial drugs are kicking my ass! I was so out of breath this week it was hard to walk from my hotel to my car without my heart pounding against my chest. It felt like I was having a heart attack. On a good note, I started taking a really good probiotic and it has raised my WBC to great levels. My WBC has been around 2.5 for the last 2 years, and now it has risen to 7.8. I have read that probiotics help the immune system, so I am very impressed with this probiotic. I did my research as usual and found out what I needed to look for in a probiotic. I hope the increased immune system will kill a few bad cells!!
Z, I believe your surgeon was right on the arm port. My surgeon said my veins we're so small to begin with that it closed off the tube and caused the blood clot. I guess I will get a chest port when the time comes, but for now, I'm enjoying not having it. The nurses tried 6 times to put in catheter for the blood transfusion, but I think I was very dehydrated. Next time I will drink a lot of water before I have such a procedure.
Emily Louise, Still thinking about you and praying your liver values are improving. Please ask your oncologist about the AA combo. That combo can raise the liver values.
Artist & Claire, I think the AA combo needs to be studies again. Too many women have major progression on this drug combo (as I did). But then again, it does work for some. It is a very scary combo!
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Cure-ious, about the 3 v. innumerable lesions in my liver, no one ever told me I only had 3. But no one told me I had innumerable either. I came up with 3 on my own from the liver ultrasound I had at diagnosis when I watched the screen and thought I saw three lesions, being reviewed from numerous angles. As it turns out, it was numerous mets. I was in shock, denial and pregnant at that point and didn't have the stomach to ask any questions of either the doctor or my DH. And I was limited to a liver ultrasound, chest x-ray and calcium levels to diagnose my liver and bone mets as I couldn't do any of the standard tests being pregnant.
Z, I agree a wealth of information can come from reviewing the scans oneself with a radiologist. I don't do that but since my DH reviews all the CT portions of my PET/CTs with me, I know well what those gray "hypo dense" regions look like and have a very good sense at any given time how much of my liver consists of mets, which goes up and down like a yo-yo on a long string. He also explained by showing me that the measurements of tumors in the reports only account for two angles (length and width - ___cm x ___ cm) but there are really three (length, width and depth - ___cm x ___ cm x ___ cm). My last scan didn't reflect the extent of my tumor shrinkage because it didn't include the depth measurement which decreased significantly. What does a bone biopsy involve? What made you decide to have one given the recent liver biopsies?
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JFL - I have a single bone met in my sternum that is not responding to anything. I am working on getting it radiated, but it seems prudent to biopsy little bugger before radiating. One would like to know what flavor of cancer it is. It doesn't seem to be the same type of cancer as my liver mets. My MO observed that she will sometimes see two completely different metastasis from the original cancer. Oh yay. If so, one would like to know.
rpoole - amazing work on the probiotics. gut bacteria are indeed critical to immune function. curious what worked for you.
The Port Report, 10 hours after procedure. Starting to function sort of normally but still some pain. They say I could use this thing tomorrow but I cannot imagine letting someone touch it as it is very tender.
>Z<
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Z,
On ports,
Lidocaine and Prilocaine is a topical cream (prescription needed) which is applied a few hours prior to using the port. This will numb the area, the nurse also suggested putting a small square of Saran Wrap over the port after applying the cream.
Also, since you are intending to use it for other types of infusions, make sure they flush the port before and after use and the person is licensed and is experienced with a port.
We also wear masks when they draw blood from the port to prevent contamination.
JFL is correct about the measurements, they do not include depth. In Jan, I will ask for this measure as well as % of my lesions in both lobes. So far, my blood work and liver enzymes are good.
Additional tests that are run for me are platelet, rbc and wbc morphology along with CBC , CMP 4 weeks out of 6. TMs are run on a cycle. They are online with a tab for past histories and a tab for graphs. All my other tests are also included with histories and graphs where appropriate. On CTs, I read the summaries , however, I may ask for access to the scans. I have seen them but I would need more interpretation.
I do trust my MO who only treats breast cancer, I have a separate hematologist and a consulting MO at another facility. She has a great team and they are responsive, when I send the MO a question I get an answer, she is brief and direct , however that is my preference. I also see a specialist in cardiology whe looks at the drug protocols and any affects on the heart.
Emily-Louise,
You are in my meditations for postive treatment and better results
Kathy
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No-21Nov Interestingly enough, I contacted the Mayo clinic - the response after many hours was: What she has is not acute and she should stay put due to her cancer treatment. I am like, her cancer treatment is a few pills, this is more than acute, it's totally urgent. Running to the ER with blood clots every few weeks or days is not acute?? Are they crazy? What? they couldn't just say we can't do it because she has cancer blah blahIt's been a nightmare. I just came back from a whole day of Y90, first they ere delayed 2 hours, we got 2 IR to check her status, they told us it's very serious, still more than 50% of her liver is compromised.So i looked at the first IR as which is it? Is it working or not? He said it takes time. The tumor burden is excessive. They say the bladder wall is extremely thin. IR said he does not even think they could fulgurize again which it would mean, they would have to resect or whatever the bladder. It is so hard to hear this, here is a quite functional young person, she just went to PTA last week and what, she can't have her bladder and disease is very extensive. He kept saying she is very sick. My hubby, sil and i were there, we were all dumbfounded.they are giving her more anti nausea this time, so let's see if it makes a difference. She stayed over night in the area, so she could have rads tomorrow, the kids are with us. I honestly don't know, i can't tell her such a thing about the bladder.
Zar frequent miles to everyone that has to suffer and keep having to deal with this s.h t. So you think you need the one and liver biopsy? Dani had it done years apart, i wonder . I feel like somewhere the ball was dropped.
Elene so sorry to hear - i hope they come with something,
I feel we fell into a pit, to my dismay i discovered that the Center we are in, has mny good docs, but they are not precisely guided for breast cancer, even though they got the certification, the place is so well renowned but it has terrible appearance. I am feeling very uncomofrtable there, even thogh the ONCo has been very nice, move on again? They will think we are crazy, i really don't know
Nina how are you feeling?
Artist i missed it, what happened with the meds.
And don't get me started on the paperwork, all 3 surgeries reposrt from Dani just in these emergencies were misrepresented. The last one said they finally took her for cystoscopy because her bloods fell to 6.4, it's a lie, they could not flush any urine out with the irrigation so they knew it was a ig problem resident had to fight with the attending, saying we gotta do it, when they took her down to operating room THEN they got the results from the blood of the day b4 and they freaked out because now they were already in cap and gown and they had to wait for her to get at least one bag of blood b4 going in. And so on, each had lies in it.
My stomach is turning still looking for someone to help.
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Mom, It is difficult to find the right words for you. It saddens me to see you and Dani go through so much and face so many challenges. Teaching hospitals and teaching cancer centers offer the best care and the most gifted medical professionals, but they also have some pitfalls. The layers of caregivers (residents, fellows, attendings, etc) are necessary for teaching purposes, but imo they sometimes (often) cause delays, roadblocks, power-struggles, and even bickering as people try to assert themselves or prove their own worth. The people who suffer because of it are the very people who also ultimately could benefit from it, namely the patients. Dani has issues that cross specialties, Oncology, hematology, urology, for example. Each group of specialists tends to work in a vacuum of sorts, looking only at the aspects of Dani's issues that fit into that realm. It becomes difficult because no single medical professional is really taking charge to oversee every aspect of her care and giving it and her the time and attention that are needed. Unfortunately, it leaves you in that position of having to oversee everything yourself. I know how overwhelming and exhausting that is. (I went through that 2 years ago when my DH was so sick until a wonderful infectious disease specialist decided to reign everyone in and assigned someone to be charge of overseeing care.) Is there someone in authority you can turn to? Check the Patients Bill of Rights. It should be prominently displayed throughout the hospital, often by the elevators. There should be the name and phone number of someone to contact if you are not getting the care you need or in many cases even if you think you are having too much done by residents when attending physicians should be there. Call whoever is in charge and tell them what you need. Maybe they can assign someone to take charge of things so communications among doctors improve. Hopefully, they can refer you to someone who can improve the bladder situation or at least propose alternatives. Icontinue to worry that you are taking on too much, and I know you want to be strong and healthy for Dani. I know that none of this is very helpful since you are doing so much already. I am lifting you and Dani up in prayer.
Hugs and prayers from, Lynne
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I wrote a long post and now it's gone. Grrr
Mom I just don't know how you're getting through this. After hearing so much nonsense, how do you discern truth? What's this about the bladder? What does it have to do w y90? They did do the y90, right? The doctors sound very depressing.
I know she's very sick but still active. I'm sure your heart is hurting and hoping at the same time.
Rpoole I confess I do not fully understand how immunotherapy works. I'm glad you and your doctors do. Is it your immune system in hyper gear killing bad guys that's making you sick? Or the pill/chemo they are giving you?
Meanwhile, let's keep snuggling with our pets whenever we get the chance.
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I was offered two trials at Texas Oncology. The first one was a Phase II gem/carbo adding G1T28 or trilaciclib to protect my bone marrow from damage by the chemo keeping my immune system strong. The second one was the one I went down there to pursue: Phase III trial of IMMU-132 vs treatment of choice by physician. The doctor suggested I take the first one since I haven't had gem/carbo yet. I agreed but this trial has three arms: gem/carbo alone, gem/carbo with drug all on same day, or gem/carbo day 1 and new drug day 2. The trial is randomized so if I am selected for the first arm, I will opt out and do gem/carbo here in Oklahoma City. The good news is I can try for the other trial after gem/carbo either way. The issue with the second trial is that it's 50/50 that I will be selected for the IMMU-132. If I am not, I can keep trying to get in until I am selected, at least that is the way I understand it.
Doc is ordering a brain scan because I have been have headaches off and on and ear pain in my left ear. Please please don't let me have brain mets! Once that is clear, I will go to Dallas for CT and Bone scans and blood work. I find out the day before my scheduled first round of chemo whether I receive the trial drug.
So here I am waiting. I haven't had a treatment since Oct 31st. Since the Taxol was ineffective, I am concerned that my liver lesions have increased.
One thing I am doing is using my time wisely and doing exactly what I want to do.
I am praying for each and every one of you.
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I too went to bed last night with my sweet persian kitty. Mr Tiny just melts me and crowds out Mr. C. Kaylynne - rooting for you to get on a trial asap. My dad was from Piedmont near OK City. For any ladies considering Afinitor - please rethink this. Yes its an mTOR inhibitor, but not a very good one. I had no response to it, got majorly worse and now call it Aphony-tor. RPoole and others will warn you - it can cause lung issues, mouth sores and only a few ladies respond.
Please see the Afinitor thread and reconsider your next med. There are newer meds like Abemaciclib that you may respond to with better success. I would NEVER take it again, and wish I NEVER had. That is my unlabled warning and opinion. A full box sits in my cupboard rather like rat poison. Robin - I am thrilled to see your WBC increase and hope you can walk to Starbucks soon with ease. 
Z - hoping your next scans point the way like Polaris the North star. You are so proactive it's wonderful. I am looking forward to finishing IV chemo - 5 more rounds. Then we will see if the right liver micromet is still there and/or his buddy pesky jaw met. Sadly not a candidate for Y90 yet - too small. But watching. I'm thinking immunotherapy, and may go to Mayo if needed. All depends on scans. Meanwhile A-train can drop my TMs to normal. That is my Xmas wish.:))0 -
Artist and LALady- will follow your guidance for subsequent treatments, since you guys are just a step ahead of me
RPoole- which probiotic boosted your neutrophils!
MommATT- We are all very very concerned for your DD. It's painful to even consider moving Dani to yet another MO office and set of clinicians to meet and discuss her case, sadly I don't think anybody has the magic bullet you are seeking. Right now she needs something to drop her massive tumor burden, and obviously they all know it. Plus this issue with the bladder, It may all become even yet more complicated as other systems get affected, so if it were me, I would stay put but try to get them to add immunotherapy or any other hail mary they've got. My neighbor died many years ago just two months after the birth of her second baby, a rare gastric cancer that developed during her pregnancy, and she went from doctor to doctor, when one said it was not ethical to do any more surgery on her, she found another one who would (to restore one kidney function), and when that doctor said no more, she found another one who would, and then she died just two days after that third surgery. We all understood how desperate she was to live, and nobody had any answers, it was just so profoundly sad.
For all- I heard yesterday of a paper coming out in Nature to the effect that cancer cells differ from normal cells in that they lack an internal circadian 'rhythm' ( in normal cells, certain sets of genes can strongly change their expression level up or down in a regular pattern during the day/night cycle- and this does not happen in a screwed up cancer cell). When researchers restored the circadian rhythm, the cells could not handle it and died. The drug they used to restore it was an REV-ERB-alpha drug, and the test was in glioblastoma, because the current versions of that drug cross the blood-brain barrier and accumulate to their highest levels up in the brain. The results look impressive and its a way new idea...
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Cure-ious, The probiotic is called Pro45 and I am attaching a pic below. I googled the top 10 probiotics and this one came in at number #2. I bought it off Amazon for $33.
Grannax2, Its definitely the meds making me so sick. I was feeling this way long before I started the probiotic. I do not know much about immunotherapy, but just wishful thinking that the increased immune system might kill a bad cell or 2. If not, at least my immune system can protect me from getting colds and such.
Momall, How is Dani holding up through all of this? I always have Dani on my mind and I pray this Y90 will clear out the liver. Prayers for you both.
Kaylynne, Carbo/Gem is a good combination. Carbo was working wonders for me until platelets started tanking and oncologist was worried about bone marrow damage. I didn't know about G1T28. Is this an approved drug or a trial drug? Good luck with your trial.
Claire, You are almost done with the big chair!!! YAY
Z, glad your port placement went well. I think I would wait a few days before accessing it. That sounds painful!!
Robin
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Cure-ious.
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To all of you lovely ladies.....I saw this in the infusion room yesterday and needed to be reminded of this. We are all stronger than we realize!!
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We all need a sign like that, like on the bathroom mirror or like a pic w magnet for frig!
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rpoole1962,
G1T28 is a trial drug that is supposed to prevent bone marrow damage while on gem/carbo. It's been used with other cancers but this is the first trial for triple negative mets.
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Thanks Kaylynne.
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It seems Halavan has already failed. Just had scans start of Nov and they showed good response...reduction of 2 or 3 cm off largest tumors. But post Thanksgiving symptoms show up. We rescan and I have increase of the same size and new lesions. I am going to try to continue Tues so long as the liver is not at risk. We have not yet had time to gauge whether the pembro eribulin combo can do something different than eribulin alone. Uck.
Plans b or c are abraxane or immu132 trial which could turn out to be just navelbine as it is phase 3. I fear I'm coming to the end of my hand. One of these last few cards has got to be a winner...or how about all of them? Is that too much to ask?
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Kaayborg, it certainly is not too much to ask that one of the treatments is a winner for you. I hope you find your next plan soon and that it is THE ONE! In the meantime, I am lifting you up in prayer and giving you a big virtual (HUG).
I hate this disease!
Lynne
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Kay Lynne: I called about the immnu132 trial here in Atlanta. The research nurse told me she thinks the FDA will fast track this drug because of the results the first qtr or 2nd qtr of 2018. So it will be available as a treatment option not related to a trial. She said the criteria will be as a third line agent.
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Kaayborg, my heart breaks to read your post. It is not too much to ask that ALL of those treatments work. Is Doxil an option as well? I hear it is packs a very powerful punch, with less side effects due to its liposomal structure. I am keeping you in my prayers.
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