How are people with liver mets doing?
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Gum...so your facility for cancer knows what batalialon you are in?? Why would they even ask that and how do they even know what means what? I have never heard of that and have never had a doctors office ever ask me or inquire about my husbands unit? They ask if he is active duty or not that is it. I believe that would be privacy issue you should look into that...I mean what if you were in Intel???
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As I mentioned before, this has nothing to do with my treatment facility...except they cannot access my Tricare insurance because I am "not eligible."
My unit, Warrior Transition Battalion, has let numerous admin details fall through the cracks in my case and others. They are the ones that told me I do not have insurance for the 2nd time in 2 months.
My perspective is they allowed this to happen, again, and they get away with it, because the Soldiers assigned to them are throwaways. They have abandoned us and do not care. We have ZERO value to the Army anymore so why should they bother about the details anymore? In my case, I am the only terminal cancer patient they have right now. They do not understand how serious and devastating it is. Their answer to everything is we'll fix it.
Several months ago, August, when they were 9 days from kicking me out with no benefits, I screamed at them that they cannot fix it once I'm in my casket. They absolutely do not get it.
It is abhorrent to be treated in such a throwawy manner. Because I do not have enough going on.
Venting.
Gumdoctor
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Wow I have never heard of any Marine ever being treated that way. Why not file and IG complaint against them...you absolutely can do that and I absolutely would if I were you. You will see how fast they straighten out.
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NicoleRod,
Yes husband and I are thinking about it. Not just for me but for the several these things have happened to.
I was in the Navy for 5 yrs and Navy Reserves for 9 yrs and worked with the Marines. The Army is n o t h i n g like the Marines. They do not care about people but they say they do.
Gumdoctor
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How about a little good news for a change...
Yesterday was chemo day:
1. WBCs were through the roof (21 instead of 0.4 last week) thanks to 4 filgrastim injections since last week.
2. Phosphorus was in normal range compared to low 3 weeks in a row, due to daily K-Phos 500 mg supplementation.
3. Because these 2 numbers were "good," I received study tx as planned. We did labs at 0800 and left the clinic at 1500.
4. I am continuing with the study for now. Will do filgrastim injections after each tx. Will also continue K-Phos to keep phosphorus levels up for now. Next tx in 2 weeks and scans in a month.
5. Army "fixed" the insurance issue again. We will see how long it stays fixed. I am not hopeful given their track record.
Thank you all for your encouragement. Feeling a little more upbeat for now.
Gumdoctor
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Gumdoctor- Glad for you. Now rest, I am sure. Hope side effects from yesterday's treatment are mild for you. Praying for your scans.
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GD that's encouraging news, and I hope you have a happy New Year with your husband and your kitty cats!
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Gumdoctor, way to close out 2019! I like the new plan so that you can stay ahead of any issues that delay treatment. Sending up prayers that new tx is kind to you and effective for a long time.
Wishing everyone good things, big and small, in 2020. Hugs from JL
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THat is good news. Starting the New Year with Hope is the best news.
I'm feeling accomplished, if a stage four cancer patient can feel that way. I'm so confident in the y90s, and they are done. It feels like I've given myself the best shot at living longer. There will be plenty of unknowns in 2020, I'm not doubting that. But, my most deadly tumors are on their way to being dead. 💞
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Gumdoctor,
Great news that you are finally starting on your trial! Hope it works well for you. And fingers crossed on the insurance, too.
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it's so nice to read such good news ending 2019. Wishing everyone no delayed treatments, tolerable side effects and scans that give us hope.
I still believe in miracles.
Mauree
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Gumdoctor, I was so happy to read that good news from you.
Grannax, I love the image of liver mets being on their way to dead!0 -
Rosie. Evidently, the dying process takes awhile, but once they are dead they STAY dead. Lol
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Checking in. I have two tumors showing on the CT scan, and one of those buggers does not seem to care about Xeloda, Halaven, or Doxil. Doesn’t produce CA 27.29 protein either. It seems there has been a split or divergence of tumor charatceristics. Picture a forked tree. So the tentative plan (pending MRI and doctor visits) is to bomb that one with Y90. Then I will go on neratinib to target the Her2 mutation that shows up in genomic testing. We are betting on this mutation being the driver. We will add a chemo or maybe faslodex, not sure what yet. My onc has indicated that we are in the Art of oncology zone now.
All the uncertainty and medical incidents of the past six months knocked me down physically and mentally. I have been talking with a counselor (psychologist, social worker, or mfcc) at my cancer center and have gained some insight and started to find my balance again. Started to get up off the couch.
Nice to see so many friends checking in here. If we must do this, at least we can do it together.
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I had appointment with my MO. She decided to let me stay on Fazlodex injections for two more months. On my exam she told me that my liver felt smaller/better than back in October. She's also waiting to do scans.because my IR Is going to need a PET in three months. Insurance won't pay for two so close together. I'm hoping they can use the same one.
I feel like I've had a reprieve. Fazlodex has been easy, no SE. Meanwhile on Jan 15 I'm scheduled to have my liver AVF repaired. At least I know what I'm doing in January. 💞
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Grannax,
Sounds like a plan! Yes, faslodex seems really easy.
Shetland, you mentioned y90 for a single lesion. Have you thought about/discussed ablation? They can do either microwave or cryo ablation. Might be less difficult than y90? Also, sorry about how you've been feeling, but happy that you feel like you are emerging from all of that.
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My thoughts exactly, BevJen. My onc says this IR does them all, so at my appointment next week I will be asking the IR why Y90 and not a different one. Can anyone tell me which local liver therapies an IR does and which a radiation oncologist does?
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Shetland,
I know that an IR will do y90, ablation, and chemoebolization (insertion of chemo right into the lesion). I also know that a radiation oncologist will do SBRT (NBNotes has had that done, if you need to ask about it).
The IR who did my microwave ablation (at Hopkins) initially suggested chemoembolization. I sent my slides to Dr. Lewandoski at Northwestern (the guy who has written a lot about all of these techniques for BC patients). He was the one who suggested microwave ablation, and the Hopkins IR said he would go with it, even though it wasn't the first thing he thought about. So far it seems to have been a good decision.
I also talked with my radiation oncologist from my first cancer rodeo in 2003 and asked her about SBRT. She said that they use that for limited numbers of lesions. From what I understand, it's a multiple day procedure with targeted radiation.
You mentioned neratinib, which is on my radar too because of the ERRB mutation. Would you go into a trial for that, or would you try and get it via compassionate use?
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Nice to see you Shetland. I’m glad you have some options for the stubborn lesions. I’m glad you got off the couch. It has been a stressful time I think. Maybe the new year will invigorate is all.
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I’m down to CA tomirrow fir the day and back. I will be treated with TDM1 for systemic treatment and check in with the clinical triss as l tess as m. Then I get my second round of neratinib pills. it’s been quite the journey.
Hoping body adjusts son to the new treatment Ed by.
Think ofvv BBC everyone every day.
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Shetland and Grannax- good to hear from both of you. You are in my prayers.
I cannot really give any advise at this time. I am still on my first line therapy-Ibrance. PET in Nov showed no uptake. Next CT in Feb. Praying will stay stable for some time yet. I know someday that things will change for me, and I worry for that time. I have mentioned before that I live in a rural area and my MO is nice, but I worry about her expertise when things get dicey. We do not do Y90 here, or even ablations. So I would have to travel for more complicated treatments when simple Ibrance fails. I feel so dumb when it comes to the treatments you all are discussing. I have been on Ibrance for 25 cycles now and the "easy pill" has got me into a state of simplistic stupidity. God, I fear when I have to learn all about this stuff and have to seek out the care I will need then.
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Hi, Shetland. Sounds like you'll be on the y90 path, too.
Yes, the New year needs to invigorate us. I do not want to repeat last year's fails. I feel OK with staying on Fazlodex because my lung mets are not causing me any problems right now. I don't feel at risk to have to wait for a scan to see what they are doing. We all know that the liver mets are the more serious issue. Waiting for three months is just a have-to thing. I don't want to do it too soon and get mixed results. But, I think he might order an MRI not PET. I need to call his office to find out and schedule.
Who knows, Fazlodex might be helping. It was mentioned on my genomic testing results for ESRI.
Candy We've all been where you are. I had a steep learning curve when I came on here three years ago. Look at me now. I'm giving advice! Who knew? The ladies who were here three years ago, so many of them gone now, answered a thousand questions for me. That's how we learn and teach.💞
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Grannax, I hope you can make the most of the waiting time. Faslodex ought to be fairly easy compared to other things; I hope it treats you well. I am off all drugs for a week or two and I think I will feast on delicious, juicy grapefruit! (Grapefruit interferes with so many drugs, so I only eat it during rare no-drug times.)
Candy, I think you are more educated than you give yourself credit for, and you will learn more as needed. You will probably want a second-opinion onc eventually. Maybe you will see that person for planning and decision-making, but implement most treatment closer to home.
Leftfoot, sending you strength and hope!
BevJen, my onc and nurse are working on getting the neratinib this week, so I guess that would be through compassionate use. I saw a liver/biliary specialist, a surgeon, a few months ago when we were investigating whether I had primary bile duct cancer or “just" ILC in that area. He was so thoughtful and clever. He went back over my scans for years to see if he could spot an ILC lesion in the area and found a possible one. It was he who suggested microwave for one of the lesions I had. I am going to see him to get his input a few hours before I see the interventional radiologist. I will look up Dr. Lewandoski's work. Also, duh, I will go over Bestbird's pages on local liver treatment. (I forget obvious things these days.)
Bev and Nkb, about getting up off the couch. The counselor and I talked about how I have been knocked down so much in the last six months, and how some part of me was probably thinking, why even get up anymore. And how I haven't had much chance to heal physically. But she suggested I remember that I could choose, and the act of choosing would be good for me. I realized that I would be taking back some power by choosing. I could choose to stay on the couch because rest is what I need at this moment, or because I am enjoying this book, etc. Or I could choose to get up and do a chore or make a meal, etc. That has helped me not to squander the time I have on watching more YouTube than is good for me.
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Shetland- choice is good and the least you deserve. I seem to feel better when I get off the couch and go outside- so I do. But, if I didn’t want to - I wouldn’t either.
I craved and ate grapefruit throughout my entire pregnancy - enjoy it while you can!0 -
Shetland, enjoy the grapefruit! It is my favorite and I miss it dearly. Also, it is like drano for the liver. Remind yourself that it may be helping your liver to heal itself in addition to tasting so wonderful. The only time I "cheated" and had a grapefruit or two in the last 5 years was on Doxil. The infusions were every 28 days and I had a grapefruit on one or two occasions smack dab in the middle of that time - 14 days after the infusion and 14 days before the next one. I figured it wouldn't be a good idea to do that regularly but it ended up being ok for those few times. There hasn't been another time where I felt safe cheating like that. I used to eat a grapefruit a day before going into this perma-treatment state. Local treatments may be just what you need to get your liver back in check. I am glad to hear that you may be starting to see some light at the end of the tunnel after the rough year. I have been in the art of oncology stage as well for quite some time now! Interesting times.
Grannax, which doctor is looking for you to do a PET? I was told by my IR that the liver may look worse for 5-6 months after Y90 before it looks better, due to edema, rings around the treated tumors that light up on the PET scan due to the radiation and other changes that occur when it is working. I had a PET after 3 or so months after my Y90 that my MO ordered and it came back appearing really bad - increased size and various treated areas lighting up. My MO had to call the radiologist to remind him about the Y90. It was in the notes but clearly the radiologist did not read those or wasn't aware of the significance of that fact. The radiologist subsequently revised his report to stated that it appeared I was responding to the treatment.
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I read about liver abalation, Y-90, etc for local treatments but my oncologist brushed it off saying they were too toxic. I had CMF for 4 cycles (4 months) and the buildup of toxicity is causing nueropathy in my toes to a point where I cannot sleep. I have constant pain and burning in my toes on both feet. MO says it is due to different chemos I have had in the past 6 years. But this symptom started on Day-2 of the 4th cycle of CMF. Will wait and see what the pain specialist says tomorrow.
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s3k5So sorry for your painful SE. I hope you get relief! hugs to you. I had horrible SE on my first doxil but fortunately wore off. But having 2nd one Friday with a dose reduction.
I don't understand why your MO does not encourage you to pursue local treatment options. Mine was all for it to reduce the tumor burden. Especially since they are being stubborn - just found out they are still growing on doxil(3rd line since May)
You may want to ask again for an IR consult with expertise in local liver treatments. Sometimes you just have to push and be your own best advocate. I learned about all my options here and came prepared to my MO. fortunately she is supportive.
Considered surgery but it is off the table now that the tumors are in both lobes while trying to find systemic med that would control them. SBRT was considered earlier, but same problem - tumors are too big now and too diffuse. Getting y-90 at the end of the month. prayers that it kills the big ones while trying to find the right meds.
Dee
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JFL. My IR wants the PET at 3 months. I guess if there's any doubt help order an MRI. 💞
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AlabamaDee, so sorry to know about diffuse liver mets. I do hope Y-90 helps with the larger tumors. Have you had other chemo like Taxol? I was on Taxol for 6 months and it was relatively easier than CMF or ACT. Taxol helped control my liver mets for 3-4 months and then the cancer cells mutated and became resistant to Taxol. I did cold capping to minimize hair loss. I go out with a winter cap since it is so cold on the east coast! I will be getting a Pet scan next week and then seeing my MO. I'll take your advice and push for local treatments. I haven't had a scan in the last 3 months, so I don't know if CMF is working on the liver and bone mets. SE are horrible, I don't think I'll continue this anymore.
Grannax2, hope your scans show positive results. Keep us updated.
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S3K5, with neuropathy that bad, of course you should seek an alternative. What is this oncologist thinking? Quality of life must be part of the equation. Are you using cold socks and gloves? As for local treatment, I agree with going to see an interventional radiologist and not taking the onc's word for it. Doctors sometimes refuse to consider things they themselves do not understand or offer, and sometimes one bad experience makes them overreact and avoid something for everyone.
JFL, I did not know that grapefruit was healing for the liver. Thank you for telling me!
Nkb, oh yes, going outside is very good for making me feel better. Just stepping two feet out the door and seeing a flower or a bird can do wonders. I have to overcome the inertia in order to move from the couch to outside, so that is where I ask myself if I am choosing to stay on the couch, or if I am choosing to get up and go outside.
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