How are people with liver mets doing?
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Nicole - so much seems to happen all at once that I am sure its frightening, especially when you dont know what's going on. I hope you can speak with your MO today to tease things out. Praying all will calm down. I am sure the anxiety does not help. If you aren't taking anything for anxiety, you could and that may help you deal with all the ups and downs. Worth considering. I didn't want to but glad I made decision to take them and I also see an amazing counselor to help me through these uncharted waters.
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Nicolerod, what helped me when I was sinking: Think of an immediate goal that is worth living for. For example, your son's wedding. You have been looking forward to this event for a long while.
Please, if not already, get in contact with your MO or the one on call before your mouth gets worse. If your cancer center has a palliative care group, get in contact with them asap. They specialize in folks like us..pain meds, antidepression meds, anxiety meds, counseling to help cope, techniques for mind relaxation. Please take advantage of this to help you thru these awful times so Halaven can do its job.
You will not be alone. We 100% understand when you start to think if treatment is worth it. Reach deep, find your grit..I can sense in your words you want to live.
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Nicolerod
Hugs and prayers
Please call your doctors office ASAP and tell them about your mouth issues. At least your nurse can chart the issue and possibly head off a potential worse issue.
Also magic mouthwash is only $40 at my compounding pharmacy. That is out of pocket since many insurance companies no longer cover compounding. Please try to call around to a compounding pharmacy to see if you can get it cheaper. It won't heal the sores like the steroid mouthwash can but it does numb your mouth for awhile. I would send you my unused but it has to be refrigerated. 😉
Dee
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Leftfootforward.
Geez, low hemoglobin again? Weren't you just cleaning and reorganizing your household stuff with the help of steroids?
If not hemolytic anemia and not toxic reaction to current meds..what is causing your body to kill off red blood cells. I guess that is the main question you are dealing with right now. Hoping you can get those transfusions asap so you can get some relief.
Just thinking of you today.
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NicoleRec - I have used salt water rinsing/gargling with some success, but the mouth sores I get do not seem nearly as bad as yours. Mine mostly feel like something is there in the back of my throat, no redness or pain. I think I need to do these several times a day rather than just when I notice them, but I don't, so they keep coming back. I wonder if Ibrance changes the pH of the mouth making it more susceptible and if nutritional changes would help reduce.
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Nicole, hope you are doing better soon. The constant struggle can drag us all down at times. I don't have any mouth sores right now but I have tooth pain and will see the dentist Wednesday. Spoke with my MO this morning so she knows what is going on too. Sometimes I just have to push on one hour at a time. My goal today is to feel well enough to cook dinner tonight. Keeping you in my prayers.
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IntoLight - I hear through your words. I pray for strength,peace and comfort for you.
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Into the light I pray you feel better !
Ok..so I went to the dentist I have oral shingles/veracella-chickenpox/herpes zoster apparently its all the same virus. The clear indication that it was oral shingles is that it is on side of my mouth. The pain is very real not only in the mouth but in the jaw bone and neck etc. So my MO is calling in Valtrex I pray it works. She is also calling in that magic mouthwash, which I am praying also will work and be affordable since it's being called in to a compounding pharmacy as Dee mentioned.
Thanks for holding me in your prayers
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oh Nicole shingled. That’s really rough. I pray the meds take effect soon and you get relief.
In my thought
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Nicole,
If the magic mouthwash is too expensive I just came across something that said that that peroxyl rinse (Colgate name brand, CVS has its own) that is pretty inexpensive. Good luck.
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Oh my Nicole- oral shingles. 😢I can’t imagine the pain and suffering you are experiencing. Just keep your spirits up knowing that you will get through this.
I have dreaded getting shingles. My hubby had a mild case a few years back. I wanted to get the vaccine but insurance wouldn't cover it.
🙏🏻 for all the meds will ease the severity and pain.
Dee
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Nicole, oh my, shingles? That is just awful. I so hope you get some quick relief. Thinking of you.
IntoLight, thinking of you, too, and hope you're feeling better.
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Nicole, oral shingles sound painful. I didn't know of such thing existed. Glad you found out what the mouth sores are so you can treat them properly.
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Dear Nicole, we are with you. Uh, probably chemo kicked in, wiped out immune system and the virus flourished. Do you administer Neupogen/Neulasta or stuff like that with Eribulin? You urgently need your immune system back to fight the virus. I am sure your MO will try to fix this. Hugs hugs hugs, Saulius
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oh Nicole! Shingles!! Painful. An answer, but a painful one. Hoping the meds work quickly to reduce the suffering and let you get to the other side of this. 🙏🙏
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Re-posting from another thread: Sandra's full-body CT results came in - all NED. I am still shivering, yes, scanxiety is real:/ Very symbolic, as in this day (04/08/2012) we got married, and then in 2017 on this day we sat in doctor's office and received these terrible news of terminal cancer... I am kind of hesitant to post good news here, as so many of you are suffering, so wanted also to apologize in advance, but your support is what made these days so much easier for us, and I wanted to let you know... Hugs to everyone, Saulius
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Saulius,
So happy for you and Sandra! Don't ever hesitate to post good news. It lifts all of us up.
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BSandra, always post good news, please!
It really does help to counter balance the hard days.
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BSandra- Always post good news!!!! We need to hear it.
Nicole- Oh my, shingles in the mouth. So sorry to hear it. You cannot catch a break. Gentle hug from here.
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Saulius- thanks for posting the good report! We have a lot of ups and downs in this unwanted journey. Rejoicing with y’all!!
Dee
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BSandra and Saulius - we share the good, the bad, the ugly here. GOOD news is the best news. Hope for you and Sandra and hope for all of us. Enjoy this beautiful time. Leave the future to the future. Celebrate this news today!!
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that is amazing Salius. We needed some good news. I love waking up to this.
Thank you for sharing.
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Saulius. By all means share good news! NED I have goosebumps!. Congrats to both of you.
Nicole That sounds horrific but good that you knew to go to the dentist. Hopefully pain relief is on the way. 💞
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BSandra- hurrray!!! So.glad to hear your excellent news!
NicoleRod - shingles in the mouth sounds awful! I hope the meds kick in quickly
Intothelight - getting through hour by hour is tough. I hope you had some relief.
I'm just finishing my week off & feeling better every day so I hope that means it's all working & my liver is healing. Bloodwork and visit with MO tomorrow and then Thursday we start Cycle 6.
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Saulius, so happy to hear the good news! NED...hooray! A good anniversary gift too! Funny--we got the news of my Stage IV on our anniversary also...a tough day. But that was four years ago and still going here.
Nicole, shingles is painful anywhere but I can't imagine oral shingles. Hugs and prayers!
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Saulius, Wonderful report! I'm also happy you got some positive news on your anniversary.
Nicole, Sorry this has been so difficult for you. I hope the shingles can be treated and you get some relief. You sure deserve a break. 🌻🌻
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Hi all...thank you SOOO MUCH for your thoughts, well wishes, keeping me in your hearts and prayers!!!
So I had a typo in my last post...the sure indication of being oral shingles is that it is on "ONE" side of the mouth.
I started the valtrex today and I got the magic mouthwash. A friend also told me to take a teaspoon of Organic Extra Virgin Coconut Oil and let it melt in mouth and swish for a 30 seconds it not only does give some relief but she says it can help heal it?? Hope that's true.
The Struggle is Real here ladies...lol. but I am back on the bike .....I cry out.(literally)..and He answers! God is really perfecting me through this trial..lol Amen!
Saulius so happy for you both!!!! WHOOO HOOO !!!!!
Saulius...no neulasta for first treatment...they give it every other one...but when I went in the hospital with the fevers on Friday night/Saturday morning my neutrophils were actually normal and good. I have heard that Stress can bring it out. I will say this...when every I got a Cold Sore on my lip (besides when I was on Ibrance) it was ALWAYS after I had a fever. I had a fever of 102 Friday and then Saturday night this started...so I think between stress of starting the new treatment, the chemo itself, and my fever...it brought it out. ...but it could also be like you said just low immune. I will be getting the neulasta this week though.
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Good to hear Sandras's NEAD. Nicole, sorry to hear about shingles. My oldest brother described how miserable it made him. Hope you find relief. Acupuncture might help with stress.
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Dear all, thank you so much for all of your kind words and support. You all are so awesome...
Nicole, wow, great to hear your blood counts were good. I checked Eribulin and its nadir is at ~13 days, so during first days immune system should be okay. And you might be right - stress is what can cause this as you have been going through so much lately. Your "back on the bike" is extremely encouraging though - it made me smile:) Sandra's MO used to say "just remember, if you suffer, C is suffering too, but you are stronger". Big body reactions to chemo, she once said, usually is a good sign.
Hugs to everyone again, Saulius
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hi everyone
3 month scans tomorrow with results on Friday. Scanxiety is real. 🥴CT chest, MRI abdomen, bone scan.
The PET 3 months ago showed no uptake in the liver!! 🙌🏻 and shrinking tumors there. The lung lesion was small but had uptake. I also had uptake in the butt where I get my shots🤪I am hopeful that everything is still stable/shrinking on my Afinitor/Faslodex/sandostatin with local y-90 plus bland embolization to liver and SBRT to lung lesion.
This treatment plan has been ok other than needing frequent mag infusions. I finally got my bowels working better but the hemorrhoid remains a nuisance. 😒
I have been getting daily headaches the last couple weeks (brain MRI in June was fine). They recently checked my thyroid TSH level- it's dropping but still in low normal. I have high anti-thyroid (Sub clinical hashimotos) that I used to treat with armor thyroid(went to a functional health DR for that but stopped since becoming metastatic ) So these numbers are weird. FYI-awhile back theMDACC doc said to stop the thyroid med since I wasn't symptomatic and thyroid was normal. I may ask to be referred to a local endocrinologist.
I will post results on Friday. You all have been my best resource for understanding and navigating this unwanted journey. I learn so much here and appreciate the support we have for each other.
Dee
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