How are people with liver mets doing?
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Nicole, you are right Cyberknife system uses SBRT to deliver pinpoint radiation. Are you in a lot of pain due to C7 Mets? I got tremendous pain relief after Cyberknife treatment .
BevJen, so sorry to know you felt sick due to oxy. I cannot tolerate any immediate release opioids so I take extended release Tramadol and hydromorphine for pain.
I am feeling better than yesterday, only a dull pain which seems to get worse with movement. I am off from work this week which really helps.
Pamela, hope your brain scan comes out clear. Lymph nodes swelling could be due to many reasons,cancer is one of them.
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Pamela- Check with your facility for prep instructions for abdomen CT, but I have had 3 years worth of them. One facility said no food or water for 4 hours prior, come in 1 hour early to drink oral contrast, then they start IV and start scan giving IV contrast 1/2 way thru test. Other facility said no food or water for 2 hours before and no contrast given to drink. Started IV and gave contrast that way during test. But no need to watch carbs either way.
Cannot give advise on lymph nodes. I have never had an issue with them.
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Candy no I am not in pain....I mean, if I tilt my head all the way back (chin up towards ceiling) I feel pain but thats it....
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Nicole, Grannax, Moth, LFF – Best wishes for excellent scan results!
S3K5, I had my microwave ablation yesterday and am feeling well today. So far the pain and nausea have been mild. I hope you are recovering well and that your Tempus report yields useful information.
Bevjen, I LOVE, LOVE, LOVE that your IR wrote "Curative" intent!! I'm sorry that the pain meds have caused nausea. The anesthesiologist put a Scopolamine patch behind my ear. I also took 5mg of Compazine in the morning and 1.25mg of Olanzapine at bedtime. Enhertu causes nausea, so I've accumulated a small arsenal of anti-nausea meds. One "do no harm" and surprisingly effective anti-nausea treatment for me is fresh ground ginger in boiling water. I hope that you feel better soon!
Nicole, I had proton radiation to nodes in my neck. It caused esophagitis (trouble swallowing) which was temporary (7-10 days). I drank smoothies and heavily blended soups. I would be more concerned about potential long term side effects. I also had Cyberknife to an L4 spine met and experienced immediate relief. It's a harder choice when you aren't in pain and you're treating the cervical spine…
Pamela23, My stage IV diagnosis was found with several lymph nodes in my neck. It took me forever to get the breast surgeon to biopsy them. She kept saying that it was not cancer. I didn't find out until later that biopsying nodes in your neck can be tricky which was the real reason she didn't want to do it. A PET/CT should show high SUV uptake if your lymph nodes are cancerous. A CT scan can be inconclusive if the nodes are not "enlarged by CT standard." Congrats on the falling AST and TMs! Best wishes for a clear brain scan!
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wow! Yall have reported so many good reports it is hard to keep up! I am thrilled for each and rejoice with you. Hoping that the procedures “do their thing" and shrink. I love “Curative!!!“
For those getting scans I hope the scanziety is minimal and good reports to follow.
Due to headaches/migraines I had my 3rd brain scan this year and it was clear for cancer! CSpine showed lots of arthritis but clear of cancer. 🙌🏻
Will be watching here for more good reports!!
Dee
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Dee,
So happy that there was no cancer found on your scans. I'm sure it's frustrating about your migraines, but hopefully they will subside. And yes, I could kiss my IR for his "curative" comment.
Carry on, and I hope that your clinical trial is "the one" for you.
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Theresa...which part of the cervical did you have Proton done on was it C7 it was on bone right?? I was told Proton therapy is only good on organ not bone??? Hrmmm...that is making me question the 2nd RO I consulted with.
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Good luck to everyone having scans - Grannax, Moth, LFF, Nicole, and Pamela
LFF I hope you're starting to feel better and don't have to stay in hospital for long
BevJen sorry about the problem with the meds. I hope the non-narcotic pain meds are working for you.
Nicole, I hope your worries about your bone met fade (as much as possible) with good scan results.
Pamela - congratulations on the great drop in liver enzymes and TMs!
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Blondie- are you having liver pain now? My liver has been very enlarged (down to my belly button and wider than it should be. I’m 110 at at 5’6”. No pain since do end of Aug and after 4 rounds my MO said it has definitely shrunk. She does a physical exam of abdomen every 2 weeks. So it’s not in
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JFL...how is Enhertu working for your liver mets? You had mentioned 1-2 cycles to see how it goes for your low HER2+ (2+IHC). Then next would be Verzenio +Testosterone.
Just thinking of you and these treatment struggles. You are an amazing young mom and we care about you..especially us long time liver metsers.
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Dee, that's great news and you must be relieved! Hope your migraines simmer down soon. Still waiting on my brain scan results.
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Nicole,
Re proton therapy -- I'm no expert at all on this stuff, but I just googled quickly and it looks like they use proton therapy for bone cancer, so I don't think it's only for organs?
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Dee-so thrilled to hear of your clear scan. Hope this is just one of many good things to come! Hugs, AMY
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With the help of my daughter, I got through my very long day yesterday.
I didn't expect to wake up sick but I did, nausea, bloating,queasy so we had to cancel going to my granddaughter's CC meet. We did make it to my Abdominal MRI. I almost freaked out when they put this heavy, big band around my rib cage area. I don't remember having ever had that before. Does anyone know what it's for? Needless to say that made it much harder to breathe in/ breathe out/ hold your breath....forever....30 times or more!!!!! I was cold when I went in and sweating when I got out. Maybe it was harder because I have lung mets?
Then on to the PET. Easy compared to the MRI. Thankfully, all my efforts to eat no carbs on Wednesday were rewarded by a 120 BS. Yay. If it had been 200 or higher they would have had to cancel the test.
So, now, I wait until Tuesday for results at my MO appointment. I guess what I'm praying for most is to not have to change treatment. In other words, no progression. Also, I'm curious about those two areas in my left lobe of my liver that were controversial on the last MRI.
I like reading the good news on this thread and " curative' is certainly word we don't hear often., I do have a friend whose colorectal cancer spread to her liver. Ten years ago she had SIR Spheres y90 and has not had any liver mets since then. Amazing.💞
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Grannax- Glad you made it thru the MRI, even with feeling sick. I had my first abdomen MRI a couple of weeks ago. They put a belt around me too. They said it was to keep me still. It didn't bother me. What spooked me was when they injected the IV contrast. I couldn't take a deep breathe and kind of had a head rush. Lasted only a few seconds, but kind of freaky. In your pocket for Tuesdays appointment.
Dee- Woohoo on the good scan.
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Nicole - I didn't have proton radiation therapy to my cervical spine. Sorry for the confusion. I had proton radiation therapy to a bunch of lymph nodes in my neck, mediastinal and one axillary lymph node. I mentioned it because I experienced esophagitis, and while not fun, it was temporary for me... Later my L4 was treated with Cybernknife. My L4 lesion was causing a lot of pain, so the decision to treat it was relatively easy.
Dee - So happy that your brain scan was clear!
Grannax - I hope that your liver MRI shows that the treated lesions are dead. You have been such a trailblazer in the Y90 area! Thanks for sharing your experience. It's wonderful that your friend's Y90 wiped out her liver tumors and no new ones have appeared!
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Grannax,
Every abdominal MRI that I've had has had that thing around my ribs. I've never asked them why, but the fact that they buckle it makes me think that it probably has something to do with holding the person being scanned in a stable spot.
Sorry that you felt so poorly for your tests. Hope you are doing better today.
For those folks who have trouble with the breathing, the tech CAN turn off the automatic voice and simply do the directions over the internal mike. I've had to have them do that a couple of times when I was particularly anxious -- I find it stressful to have that automated voice ordering me to breathe in, hold, breathe out, and sometimes it affects my actual ability to do it. I've had a few very kind techs who have done it themselves, and that was SOOOO much better. I also ask them to tell me in advance how long the breath hold will be -- I find that helps.
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I love hearing the "clear of cancer" results from you all.
Grannax, BevJen, Candy - I'm curious about the belt for the abdominal MRI. I've had 4-5 but never had a belt, but I was told only the last MRI showed cancer - more on that later. I was origingally thinking maybe the belt created compression for a better picture (thinking along the lines of needing a full bladder for gyn ultrasounds?), but they're telling you it's to hold you in place? Frankly, that would tick me off...I can hold still just fine on my own, thank you. (I'm going to qualify that a little by saying I'm grumpy today - lol).
So, this may be a simple question. I know getting a copy of the imaging and reports from my recent scans was super easy. Should it be just as easy to get imaging and reports for all my scans going back to 2013 (all done at the same place)? I've been purging and organizing, and I ran across two reports from an ER visit in 2013. They look so much alike, I thought Ijust had two copies of the same thing until I noticed one was U/S and one was CT. The U/S said "posterior solid mass 3.7cm , not typical of a simple cyst...could be benign or malignant...max dimension 4.3cm" The CT, using the U/S study as comparison says "indeterminate 1.6cm hypodense mass right liver margin peripherally...higher density than expected for simple cyst...recommend MRI with and without..." This second description is consistent with the hemangioma identified back then. Could the difference between 3.7 - 4.3 on the U/S and 1.6 on the CT (and similar on the MRI) be due solely to the difference in imaging? The MRIs also identified a curious lymphocele that never really had an explanation. I now have multiple tumors in addition to the hemangioma and it would upset me greatly if this was overlooked in 2013 - and in multiple MRIs since then (that were focused on something else). I keep thinking surely that could not happen and it's probably nothing, but I'm a little spun up. I know it would not change anything now, but I need peace of mind. Any thoughts?
Coincidentally, I just noticed those reports are dated 7 years, to the day, before the MRI that identified the cancer. Weird.
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SeeQ,
I've never been told that the belt (which isn't really a belt) holds you still -- but that makes sense to me. Maybe it's for compression -- I don't really know. Now I will ask on my next MRI in a month.
If all of your scans were from the same place, they should be able to easily tell you how far back they can go with reports and disks. I download most of my reports from my patient portal, but if I have a consulting physician on a particular scan, I ask for disks too. My imagining place will give you one free disk for each scan, but as far as I know, unlimited copies of reports for each scan.
As for measurements, I have found that they differ radiologist to radiologist -- and I rarely get the same radiologist(s) in the big hospital system that I use. But try to track down a particular radiologist to pin them down on something like that -- good luck. I have railed about this before -- how radiologists are the hardest docs to find and contact. The exception to that is interventional radiologists -- they are much more available and informative.
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Well Grannax..its me and you waiting...
So scans were relatively uneventful. I came home and saw this woman jogging...and just started bawling...yea...I had a little pity party..ya know the "that used to be me...I miss my old life etc"..... I guess all the stress of the scans and stuff came out...I spent and hour crying on the phone to my dear friend and now I am good. My husband is making us scones as a treat for breakfast tomorrow and tonight I am having some chips to snack on and I don't even care...lol It is ...what it is.
My telemedicine appt with the new IR is on Thursday to arrange for my Y90 and hopefully biopsy of that tumor (that was new in July but too small in July to get sample). Then Friday Telemed appt with RO about C7....
I get results Monday and then scan the C7 MRI on Tuesday I am thinking she will call Wednesday with those results.
Well you have all been with me for well over a year now...you have seen me fail on every treatment and this is my 4th line of treatment I am really hoping that it works to buy me some time...even just to be stable...so all your well wishes and prayers and most of all your "shoulders" to lean and cry on are most welcome here.
Love to you all!
Nicole
OH PS: Thank you all for remembering my scans today and being right there/here with me, means so much to me. I am truly blessed.
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Yep, Nicole I'm right there with you. It's stressful, there's no denying that💞
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Thanks Katty And NicoleRod! I'm not "officially" in the trial yet. I'll find out Monday. Apparently my hemoglobin is too low at the moment to be admitted to the study. It has to be 10.0 and mine is not. Labs Monday to see if it's up to 10.0. If so, I can be admitted to the trial. Meanwhile, I still have those pesky liver mets! I'd like to get something going soon!
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Nicole I will be thinking about you on Thursday when you talk to your IR
Theresa, YES to dead liver monsters, I certainly hope for that. Praying for another win for y90.💞
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Hi all, thanks for checking on me on this thread and through PMs. Has been a bit busy and hectic and my fatigue and discomfort are a bit up and down but fatigue is improving. I seem to be able manage eating and drinking more which helps reduce/avoid fatigue and other rough side effects of treatments. I have been getting weekly paracenteses and just had my second Enhertu yesterday. I was also prescribed Eliquis for a portal vein thrombosis and two diuretics, spironolactone and furosemide, for the (non-malignant) ascites.
I had to pull teeth to get my MO to order an ultrasound which diagnosed the portal vein thrombosis. Good thing I did that. He insisted at the time it wasn't necessary and I basically said I wanted it anyway. Just humor me. As of a few days ago, I am now under the care of a nephrologist set up by my DH (who is a doctor at the same hospital as my cancer center) who prescribed the diuretics. My MO previously prescribed one of the diuretics, furosemide, although it is not indicated as a monotherapy for ascites and only as an add-on to spironolactone. When I took it alone, I couldn't tolerate it for more than a few days and it wasn't working whatsoever. This new combo seems to be working a bit at least and now that I am eating and drinking more, it has been tolerable. I am now coordinating to meet with a gastroenterologist that my DH spoke to in order to check my liver and other areas with an MRI or contrast CT for blockage, possibly scar tissue, whatever the gastroenterologist thinks is appropriate. I need to be under the care or either a hepatologist or gastroenterologist to monitor local liver symptoms. Another thing I have had to pull teeth to get and in the meantime wasting a lot of time. It is incredible. I have to do everything myself with DH help. It is a wonder I have made it nearly 6 years with a liver full of tumors the whole time. To his credit, my MO did send me for a second opinion. The one piece the second opinion doctor gave me was to suggest I pay out of pocket for Enhertu if need be and if we can do so. Sounds simple but not sure I would have thought about that option, at least not at the outset. I am receiving a discount on the Enhertu but it is still super expensive.
In my blood work yesterday, my AST and ALT went down considerably but my alkaline phosphatase continues to sky rocket. Tumor markers not yet back. Seems there may be a blockage but not sure if it is from the thrombosis or something additional. Nothing else showed up on the ultrasound.
I appealed Enhertu to be covered by insurance but it was rejected again. The letter took me so long and had 90 pages of backup medical data. The letter was very good and if denied based on its content, that is not a good sign. The social worker who does appeals is a complete failure and I insisted on doing the appeal based on an awful experience with her on an appeal 5 years ago. There is one more 3rd level appeal I will seek. That one is reviewed by someone at my company that I know quite well and used to work with professionally on a regular basis. I was mortified having to go through this before with a 3rd level appeal I wrote myself 5 years ago and requested a third party conduct the review but the coworker ended up doing it, not thinking a third party was necessary and it was approved that time for another medication. Only the one employee sees these reviews, she is discrete and her office is behind a locked door even during business hours at the office. No one else will see the documents. Just weird that I have worked with and advised this employee in the past as part of my job and say hi to her in the halls and am in leadership groups at work with her. And I am still working. If I need to take a break for a few months, I will but did take some vacation time and am now back working remotely which has been fine so far and nice to think about something else other than my discomfort. I prefer not to let the cat out of the bag if I don't need to at work because I don't want to just be the cancer patient and be written off. Also, our health insurance is through my job. However, I will do that if need to do so and feel I cannot or do not want to work. It may sound strange to the appeals reviewer that I am working without limitations while the letter says I have exhausted all therapies indicated or recommended within the standard of care for metastatic BC. I am sure she will assume I am on full leave now. Also, I saw on the Enhertu Facebook group there is someone who is HER2 low like me and her insurance approved it off label. I need to reach out to her about that.
Anyway, that was a bit long but I don't know when I will have a chance to give an update again between doctors appointments, recovery and work.
Thinking about all of you. I am happy to see some good news in here from a few of you and for those who are struggling or recently received disappointing news, my thoughts and prayers are with you. XXOO.0 -
JFL
{{{{{{{HUGS}}}}}}}}}
I know all this self advocating and body healing makes you weary, Hang in there. Don’t lose heart. Your break through is coming!!!!
Dee
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JFL,
So happy to see you posting -- and all of us are pulling for you, and we all understand that you probably don't have a heckuva lot of time to post. But wow -- even with your DH being a doctor, it's amazing how much you have had to advocate for yourself. It's wild.
Hope you continue to do okay with all of these treatments, and that you are soon feeling much better. Thinking good thoughts!
Bev
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JFL, Thanks for the update! You've done an amazing job advocating for yourself! I've been through two insurance escalation appeals, so I know how much work is involved. You are a wonder! I hope that Enhertu is very effective for you. It's kept me stable (with some regression) since 4/30/20. I'm also HER2 low IHC 2+. On the DESTINY Breast04 trial, we have CT scans every 6 weeks. When will your first scan be? I'm wondering if a stable or regressing scan on Enhertu would help with your final insurance appeal. I hope that the nephrologist and gastroenterologist will be able to eliminate the portal vein thrombosis and figure out what is pushing up your alkaline phosphatase. I'm very impressed that you've managed to keep working through all of your treatment! Hugs and kudos!
Theresa
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JFL- Hugs from here, you strong woman.
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JFL, glad you checked in, but wow all you're going through. Nice you have a doctor DH who can help you navigate all this. I wish you great luck on the 3rd appeal. I also am impressed at all you do while continuing to work. Will be thinking of you, in the meantime, here's a big virtual ((((HUG))))!
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JFL - WOW! You are an amazingly strong and smart woman and an incredible advocate for yourself!!! It shouldn’t be this hard to get meds that might help you at this point. All these appeals. Really! Do they say why the denials? I pray the 3rd Levelappeal gets through. Happy the diuretics are working - will help you feel better for sure. Glad to hear liver enzymes down and hope they find reason for alk phosphatase being so high and can take care of that! Take care of yourself. Get the rest you need and somehow relieve that stress that must be building! Will be praying for you.
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