How are people with liver mets doing?
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Sandi - great scan results! Yaaay!
Shetland - also great results. I hope the radiologist's comment turns out to be just an observation, and not a new worry.
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I don’t have any heart symptoms, and I have not yet talked to my onc. But I gave her a heads-up that I will be asking for more info next week when I see her. Maybe she will check in with the radiologist and whoever else before then. When I looked up enlarged heart I found an article from the Heart Association saying that this condition may go undiagnosed in women and people of small build if “normal” is not adjusted for them. Usually I can let the various radiologist comments slide, but this one has me rattled. If it turns out to be concerning and is caused by herceptin, I suppose I will drop it and stay on the other two meds. Not sure if that would be on or off the trial. But I am getting ahead of myself, as DH is wont to point out. But I need to spin out the scenarios and possible responses to be prepared. That’s how I work.
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Sandi, congratulations! Bone healing is also very important.
Shetland... a big-hearted little pony? Mmmmm... can they compare with few previous scans (damn, I am a big fan of scan comparisons, haha:)? And why heart-echo's don't show anything?
Saulius
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You are right about comparing scans, Saulius. I just requested all four of my echocardiogram reports since I started the trial that includes herceptin. For some reason they are not in the test results in the patient portal.
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Great news Sandi! Time to breathe and soak it in
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SP - sounds like you are in a good place. Happy to hear that. Our bodies do take a beating with all these drugs. They fight the cancer but beat up the healthy body too. Side effects show this toxicity. These drugs are a “bittersweet” gift to us. Maybe as your body relaxes into this regimen you can continue to pamper yourself and find some healing along the way. Supplements, healthy food, walking, maybe some restorative yoga online, whatever it takes to take care of you
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Well I just got the date for my Y90 its next Tuesday the 22nd...appreciate any and all prayers for a successful procedure with no side effects
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Grannax,
If you are reading, please post so we can find out how you are doing. Last week you were still not feeling great after your second ablation, and so we worry about you!
Hope all is okay at this time.
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Update: MWA December 2.
What a long, miserable 15 days it’s been Finally after having 8 days of fever/ night sweats and high level of pain in liver, etc, My IR had me come to his office. He ordered CT of abdomen and chest. After a COVID testing delay, I was allowed to have it today.
I’ve learned that wheels turn slowly during a Pandemic. I saw my IR on Tuesday. Called my PCP to get her in the loop to take care of me. First things first I had to get a COVID test because I had all the symptoms. Got it and was negative. Now it’s Wednesday, No you cannot get your labs done in our office because you still have fever. So finally at 4PM I had the lab draw including culture x 2 and lots of other blood tests.
Now it’s Thursday and I’m done with the CTs done.
When will IR and PCP put the pieces of the puzzle together and come up with a plan? Who knows.
I was supposed to start Halaven on Tuesday. Canceled. Not even allowed in my cancer center until I have no fever. I agree, actually I need to feel a lot better before I start. At this rate of slowness, it will be mid January I bet.
I just want to be able to walk and breathe without gasping for air. I’m so weak and need strength. I need a DX with an easy fix.
I did read all the posts. Hoping and praying for each of you.
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Oh, Grannax, thanks for letting us know but wow -- you've really had a time of it. Has the IR completely eliminated the idea of post-ablation syndrome? I really wonder if that's what it could be, still -- my ablation in October left me not in great shape. I didn't have fevers, but I felt like crap for much of the succeeding month and even beyond. This time, it was like night and day. I'm a week out tomorrow and I feel fine -- decent energy, no pain, etc.
Please let us know what they have to say, and fingers crossed, it's easily solvable.
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Wow Grannax I feel so bad for you!!! I just prayed for you!!! Thank you for checking in.
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Grannax, I’m truly hoping your team figures out why you feel so lousy, asap.
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You are in my prayers every night Grannax!
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Uuuhh, Grannax, wishing you fast recovery. Damn Covid is slowing all the procedures down... Nicole, we'll be with you on 22nd. 22nd is a good day - longest night but after it... sun starts to come back. Saulius
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Grannax, it hurts to hear what a rough time you have had of it. I always think of you as the heart of this forum and I join with everyone else in prayers and wishes for comfort, pain relief, and information about what''s going on. I'm so sorry.
Nicole, I'll be keeping my fingers and toes crossed on the 22nd! I'll be in your pocket with many others.
{{{HUGS}}}
Katty
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Grannax-
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Nicole - as always - prayers!!! Praying for best possible outcomes and some peace for you this Christmas.
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Grannax2..you have been there for us as we endure new treatments and procedures. We support you now as you heal from your ablation.
I am hoping your DIL is available to help you and watch over you, especially with fever control and nourishment. Your liver is an amazing organ and you will heal.
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NR..thank you for leading the way along with others for this Y90 procedure.
You will have many, many people wrapping you with encouragement, love and healing.
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Granna, sorry to hear you've been so ill and having all these tests to try to figure out what is going on. I hope they sort it out quickly & you start feeing better soon!
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So, I think I have my first clue about what my TX might need to be.
I had to take 200mg of prednisone prior to my CT because I’m allergic to iodine contrast. It worked I did not turn into lobster lady. PTL.
What I noticed was I could walk and breathe without help. So, maybe some of this is inflammation and I might need to take a dose pack or some type of low does steroids for a while. It might be an important clue.
My IR did text me after he read my scan. His words were. I am very unimpressed with your scan. I’m thinking what the heck does that mean? So we texted awhile longer but I haven’t actually read the report yet.
He said lungs clear, I guess that means I don’t have pneumonia. He said gallbladder is showing some fluid around it but he thinks that’s just because the MWA isn’t finished healed yet. That’s why he didn’t want to do scans at two weeks out. He said there is a small amount of acites around liver. I said interesting because even after four years of liver met I’ve never had that show up.
I mentioned the correlation between prednisone helping with inflammation which he said didn’t show up on scan confused
I think he was very frustrated with the words in the report I told him he could always explain the healing process to my PCP I said she did all sorts of labs that will be checking on inflammation and infection he said yes let’s wait until after the labs come back
So, what do I know, I don’t have a liver abscess or pneumonia And I think that there is a lot of inflammation inside me which could be a big part of my problems
My PCP has known me for 20 years she will put The pieces together and I’ll get a DX I think my IR just wants his MWA to look good and really wants this all to be a big nothing
But, if he says let’s wait one more time I’m going to blow a fuse I don’t have time to wait I feel like I’m facing my last ditch effort by trying to take Halaven The longer I wait to feel better, the longer it will be to take H for three months to see if it’s going to be effective on my liver still full of mets, he only MWA four tumors
So there is my frustration I do think my pain is better, not gone Same with fever Swelling is still there Would a paracentisis help? Maybe What the scoop with my GB? ( it was very near one of the lesions he did the MWA this time
Any helpful ideas are welcome
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Grannax,
I'm glad that the steroids helped you to feel better re breathing and walking. That's good, and yes, your PCP might decide you should go on a course of that to relieve your symptoms.
The only thing that stuck in my mind reading through your saga is that the one tumor was very close to the gall bladder. I know that when I researched MWA I had read some stuff about gall bladders (I have a gall stone that I know has been there for over a decade). From what I remember reading, most IRs take some precautions when working near the gall bladder -- some even go to laparoscopy instead of MWA. So that could be causing some of your problems, as it sounds like you also suspected.
I hope that your PCP can come up with some answers so that you can get back to your treatment. Good luck.
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Granna, off the top of my head thoughts: steroids make us all feel better. I wouldn't necessarily assume there's an underlying condition that needs fixing. I mean there might be, but it could just be that the underlying condition is "inhabiting an ageing human body". I really think of steroids like a recreational drug. Whole lotta fun and good stuff! And then omg, really bad stuff happens...
The IR statement of "I am very unimpressed with your scan" is um, inappropriate at best. wth *does* that mean??? I hope you get to read it soon for yourself.
& ok now, my thoughts about a possible differential dx:
If the gallbladder or bile duct was somehow irritated during the procedure then that could be a cause of some of the problems. I just reviewed bile duct injuries signs & symptoms: fever, chills, nausea and vomiting, abdo pain....gosh those sound familiar, right?
So I'd be wondering about bile duct injury.
hope you get your labs back soon & see if that helps clarify things
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Sandi, Hope, Katty..Saulius and all my dear friends thank you so much for the encouragement and well wishes and most of all prayers!!! Keep em coming
I will keep you all posted as soon as I get back Tuesday.
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Thinking of you, Grannax2. It is hard to wait feeling unwell while they try to figure out what is wrong. It’s good the ball is rolling now, you have tests in the works. Try not to worry about when you can start the next treatment and just do your best to breathe out the stress and let your body heal so it will be prepared.
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NicoleRod, wishing you the best of results from the Y90 procedure, and as always you remain in my prayers.
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thank you Husband11!
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Hi everyone, haven't checked in for a while but I have some news. First, I did try to follow the SABCS 2020 but expected all the presentetions to be on demand, at least after the fact, but instead many were live and hard to schedule given the time differences. Also the searchable abstracts came very late. BUT I have made a note of specific abstracts that some of you noted and will try to get copies of working papers, etc. The CDK4/6 inhibitors were the stars of the show as well as many really thought provoking discussions of treatment bias based on ehtnicity and background. Sobering findings indeed. Of interest to some of you may be that there is a lot of work being done with new methods to determine tumor heterogeneity and new classifications such as "weak HER2+" the message being that the HR+/HER2+/triple negative taxonomy is being challenged. Especially true for many of us who have been through 4, 7, 10 lines of whack a mole treatment.
This morning after (only !) a three week wait I got the results of my latest CT. Last time the parp inhibitor had hacked away at that 11 cm liver tumor like Luke Skywalker bombing the death star, but two new mets appeared. So we did a repeat CT about 6 weeks later, the worry being that the new mets were unresponsive to the parp inhibitor. Today's report shows continued shrinkage of botht the large tumor (now less than 4 cm) and the new ones --meaning that I can continue on Olaparib/Lynparza as a monotherapy. It's been over 2 years since any scan was good without the "but"...and the chance to stay on such a tolerable medicine (also tablets= less hours at the infusion center)is the best xmas present. In any case barring any complications and keeping an eye on those blood levels (main problem with Lynparza is anemia requiring periodic transfusions)I feel like I have been given a three month almost vacation. Still taking the Herceptin but that's no big deal.
Have to say once again that I probably wouldnt have shelled out two thousand dollars for that Foundation one test without encouragement from this group-and it's turned my life around from "nothing more to be done" to back working part time and looking forward with some hope for more months than I thought. THANKS AGAIN EVERYONE!
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Hi All
grannax2 - hugs hugs hugs and prayers for answers.
Nicolerod- y-90 time. Hope it knocks it all down and you have no issues.
Arolsson- Happy Dance on your great report. It is a perfect gift for Christmas. Enjoy!
ShetlandPony- hope you get good answers about the heart mystery quickly so you can have peace.
SandiBeach- Yaay!!!!
If I missed someone I'm sorry. Trying to keep up😀
I start the SERD trial Monday. Good news- heart is good via an echo. Bone scan is clear of metastasis. Done with my 3rd liver biopsy since September. Labs before biopsy are mostly ok, liver enzymes doubled on my washout- they were in the normal range 2 weeks ago. Weird but not going to worry.
Merry Christmas everyone.
DEE
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Arrolson...thats great that your treatment is working!!!! So happy for you!
Dee thank you for keeping me in your thoughts... I am getting nervous about how my liver will tolerate the radioactive material/beads...
. but trying to stay positive.0
