How are people with liver mets doing?
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I am having more blue days. I think I need to go back on antidepressant.
I used to be on Celexa and stopped two years ago.
Any suggestions on what works for you?
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Sandi- I have been taking buspirione but think I need better “coverage”. I have been taking lorazapem for anxiety....in addition to buspirone. I just started lexapro at a low dose to see if I can tolerate it and if so will stop buspirone. Hate taking more meds but I have to function and maybe find some peace and enjoyment during this....
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anxiously waiting for my CT date sometime in Feb. just got the results of my brain mri snd I have 2 new spots. I will be getting more cyber knife radiation done to those at the end of February. I am guessing g my body CT will get pushed up based on the results of my head mri.
I really hope my liver is playing nicely.
I’m reading the thread and thinking of everyone.
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I take Cymbalta and thing it works really well. It also helps with nerve pain.
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Dee you have COVID? Oh gosh that doesn’t sound fun at all. When did you find out? What have your symptoms been like
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leftfootforward - Very sorry to hear about the new brain mets! My Cyberknife team implied that new brain mets can be well-controlled with Cyberknife, which I found comforting. I will pray that your CT scan shows no progression in your liver. Hugs and very best wishes! Theresa
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LFF. Yet another challenge for you. Sorry.
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Thank you..Lexapro, Cymbalta..will write those down.
LFF..lordy. How many cyberknifes have you had for brain mets? Yes, behave Mr. Liver. I say that to myself, too.
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LeftFootForward, I am sorry about the newly discovered brain mets. I hope that the cyber knife radiation knocks them back and that your liver is playing nicely. If you have a chance, let us know when you will have a definite date for the cyber knife procedur. Please keep us informed about how you are doing. You will be in my thoughts.
Hugs and prayers from, lynne
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LFF,
Thinking of you. You are a tough person, so I'm sure you will face this with strength. But -- hey -- tell your liver you want it to play nice.
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Sandi - I took my first dose of Lexapro today at the lowest dose, 2.5 mg. I experienced terrible side effects. I had tried Lexapro about two years ago and had the same effect, but was hoping I had gotten past that and could actually be able to tolerate it. Looks like that’s an affirmative no. I think I am one of the few that are just highly sensitive to SSRIs.
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Thank you HopeandGratitude. What do you think you will try next?
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Sandi - after that awful experience - and still feeling it today, I may just stay on buspirone and lorazapem. I am super sensitive to anything that affects CNS for MOA. They don’t have the broad antidepressant activity of SSRIsbut right now I can’t deal with something else with side effects....certainly not these. I think most people tolerate SSRIs ok but not me.
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Cancer is just plain harsh.
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Oh, LFF, I just read the news... I am sorry for these two new spots. Would be good to zap them but all always takes so much energy physically and mentally:/ I wonder how's Nicole doing - whenever she feels ok, she writes, so not writing... just hope she rests and heals. Prayers for everyone here, Saulius
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JFL.thinking of you.
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LFF- I care 😢 that you are facing the cyber knife again- glad it works for you. Hoping no other areas of progression.
Grannax2 - I have a mostly mild case of covid. Lethargic, muscle fatigue, headache, cough, tight chest, light headed, low grade temp. Sounds like a lot but doing ok just being a couch potato. Husband tested positive Jan 17. I finally tested positive Jan 23. We both had the antibody infusion. My trial biopsy is scheduled for next Thursday.
Hopeandgrattitude- I can’t take the SSRI like Lexapro-made me yawn uncontrollably. I tried the SNRI cymbalta. I got brain zaps trying to titrate off when they gave it to me years ago for nerve pain. I haven’t been on any antidepressant in a long time.
Sandibeach- I hope you find something to get you feeling better and lifts your mood. Cancer can be soooo draining.
Lifting up y’all who are dealing with hard issues and going through such hard places.
Dee
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Hopeandgratitude, I'm sorry you're having a hard time getting proper meds to treat your depression. Ugh. As you say SSRIs work for so many but for some they're just a disaster. Have you tried an older tricyclic? I believe they cause less of a serotonin response and more norepinephrine (I think? It's been a while since my psych meds course) . I hope you have a good psychiatrist on your team who can sort this out. My cancer agency has one but I haven't seen them. I think I'm still at where talk therapy is sufficient though looking back, parts of last year I probably would have benefited from meds. Sometimes hard to see when you're 'in' it ...
LFF- ugh, sorry to hear about the new brain mets. Hope you get a treatment plan for them asap.
I'm having a CT scan today, results next Wednesday. The scan is primarily to assess liver mets. My lung mets which were radiated in Dec/Jan will apparently still be a mess (the RO warned me to completely ignore the lung part of the report as it will show big blobs and the scan is too early to assess how well the radiation treatment worked).
I've been back on systemic treatment for the liver mets (tecentriq + abraxane) since Jan 12 after a 6 week break for rads. I've been feeling good so hopefully that does mean things are ok.
hugs everyone
m
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moth - in your pocket today. Good luck with scans
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thanks everyone.
Sandibeach- I think I am up to 5 gamma knife procedures and 1 cyber knife. This next cyber knife will be my second. I’m still here after 8 years. It’s been worth it.
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LFF, yes, I think everything we do is worth it. You have been through a lot.
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Leftfootforward, what sort of tumors and areas are well suited to gamma knife and cyber knife in your experience?
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Sandibeach, I suggest looking into bupropion (Wellbutrin). It is an atypical depressant in its own class called an aminoketone and is a DNRI (dopamine-norepinephrine reuptake inhibitor), primarily functioning to increase dopamine levels (which impact happiness, alertness, memory, motivation/reward-associated behaviors), which is different than all of the other common antidepressants. It helps with not only what is typically thought of as emotional/mental depression but what I would describe as "physical depression" (from treatment, loss of hormones, etc.) and it increases energy levels. I take it for chemo-related fatigue and it makes a huge difference in my ability to carry on my "normal" life.
Nicole, praying for you. Sounds like you are in a lot of pain/discomfort. Were you prescribed pantoprazole or something similar prophylactically by the IR Y90 for stomach issues? I did have stomach issues/reflux issues after right lobe (first Y90) but not left but they were no where near what you are experiencing. There is a small % of people where the Y90 actually travels into the stomach if the IR fails to properly block off the correct pathways but that is rare and people do still have stomach issues without that happening, although you are on the very extreme side of that. My discomfort started once the post-procedure steroids wore off, if I recall correctly. I hope you can find something to relieve the pain and that this passes soon. I hate to hear you are suffering.
Grannax, hoping you can get your magnesium and potassium levels regulated. Electrolytes are so delicate. I am having some issues with low sodium and potassium, which seem to be caused by Enhertu. I also developed a heart irregularity which I am not sure if it is due to the electrolyte imbalance, the hepatic vein blockage or the ascites that has leaked up into my pleural cavity and is pressing on my heart. It is not 100% of the time and is a bit unpredictable but I am young and otherwise have had no heart issues ever in the past.
As an overall update on my status, not too much has changed since I last checked in. My liver enzymes, alkaline phosphatase and tumor markers continue to drop on each new set of labwork and my bilirubin remains normal. Seems like Enhertu is continuing to work on liver mets. However, I still have the non-malignant ascites and right side pleural effusion from the liver mets triggered hepatic vein blood clot. I am praying they go down soon. My quality of life would be so much better without the ascites and pleural effusion. The ascites look awful but the pleural effusion is causing me more issues - breathing issues, shortness of breath, painful stomach issues/reflux due to pushing my esophagus out of place. I have had to sleep sitting up on a "pillow throne" for months and can only sleep sitting up on the side with the pleural effusion due to the breathing issues when I lay flat or try to sleep on the other side. So frustrating that I cannot even do any walking or other mild exercise. Other than ascites/pleural effusion issues, my body continues to feel better and better as my liver continues to heal. I would love to exercise a bit and try to regain some of the muscle I seemingly lost overnight. Also, on the whole, exercise does help with the ascites and regulating digestion which ascites impacts.
I had an appointment to have a Pleurex pleural drainage catheter inserted so I could drain the pleural effusion at home. My IR and MO told me that there is a chance the catheter/home drainage causes the pleural effusion to close up on is own over time. However, the procedure was canceled twice - once because the insurance preclearance was still pending and a second time because the scheduling coordinator botched the appointment and scheduled it over my existing appointment for ascites drainage. When I showed up, they couldn't perform both procedures for safety and I couldn't go any longer without the ascites drain and therefore chose to proceed with the ascites drain for that day. After that, I am rethinking whether it was a sign not to have the Pleurex catheter. There are infection and other risks and it can be a hassle with lifestyle restrictions, including for showering and going into water. I am also uneasy about draining at home because the first time I had my pleural space drained, my blood pressure dropped to 40 something over 30 something and I almost fainted. It took a good 15 minutes to get it to return to a safe level and required IV albumin which helps prevent blood pressure drops. I can't administer albumin to myself at home if my blood pressure drops and now I receive it preventatively before any drain at the hospital which seems to prevent the issue.
I am submitting my second, final insurance appeal for Enhertu tomorrow. I pray it will be approved. I have paid out-of-pocket for 5 treatments but cannot do that forever and have already spent so much.
I do enjoy reading everyone's updates and have everyone struggling in my thoughts and prayers. I am also cheering on those of you who have received good news lately. I still don't have time/capacity to resume post regularly. I spend so much time going to appointments and pre-appointment COVID tests, feeling not so great and trying to manage side effects from the various issues I have that I am pretty much tapped out among that, parenting a 6 year old and my full time job. I hope to be back to posting more at some point (once my ascites/pleural effusion go away as quickly as they came).
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Dear JFL, I am so happy for you and cannot understand how insurance can deny treatment, when, if not Enhertu, you'd be on another one, and any of them have ~ same price label. Just hope they understand this sooner, as paying out of your pocket is huge money... And huge congratulations to you for being such a big fighter and such a great mom. Your son is lucky to have you. Hugs!
LFF, your words "I'm still here after 8 years. It's been worth it." deeply touched me. Thank you... they will remind me what I sometimes forget: what if heaven is here? Every day spent here is a gift. Thank you.
I just... wanted to reflect of what we have achieved... from this little guy who could not eat without his dolly-bear when Sandra was diagnosed to this boy who turns 6 in a few days. Wow... life goes on... Saulius
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JFL, it is 2:45 am and I couldn't sleep so I checked on BCO. Thank you for the Wellbutrin advice. I am trying to get appt with my Palliative Care NP to discuss antidepressant.
Cancer does mess with your emotions, trying to balance a "normal" day with treatments, side effects, tests, scans plus having Mr Grim Reaper sitting on your shoulder.
But then I hear from you, a mom of a 6 year old, working fulltime, talking about ascites and pleural drainings, heart and blood pressure issues, like they are just routine annoying side effects. OMG. You have to be the strongest person I know. That has to be a huge burden to deal with those harsh issues.
What really impresses me is that you look for the positive, even wanting to exercise again and maybe finally sleeping in normal position. Plus you use your time to ask about others and give support and advice to us. You will get back to your baseline..you have done it before.
S
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Oh Saulius, your son is absolutely adorable! He reminds me very much of my grandson who just turned 6 in December. What a wonderful age that is!
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JFL - AllI can say is thank you for posting such honest yet hopeful words to us all. 🙏for you. ❤️❤️
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Dear Katty, thanks a lot! If not for him, I don't know how we would have coped with devastating stage IV de novo diagnosis... Saulius
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Saulius,
Your son is adorable. I am certain that he is a source of joy for both you and your wife. Makes all of your hard work and your wife's perseverance worth it.
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JFL,
Thanks for checking in. Happy that the enhertu seems to be doing its thing but not happy about the insurance/medication issues. I haven't had to have this fight yet with my meds, but it has to be exhausting. You seem to be handling it well. Interesting about the pleural draining -- I, too, would have read the little issues about getting the self-pump installed as a "sign" from the universe that maybe this isn't the way to go, at least not at the present. I'm sure you will ultimately make the right decision as you go along.
Hope you continue to improve -- it really sounds like this drug is working well for you. May that continue.
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