How are people with liver mets doing?
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Hello all I don't post very often but I try to keep up with everyone as best I can My heart goes out to everyone who is experiencing problems and fear especially you younger women. It just isn't fair for you. I turn 69 next month and I've had a pretty good run, six years with MBC/ 3 with liver progression but I had The Talk with my doctor last week. My poor husband was with me for the first time in a year-and-a-half and it was also the day his wonderful mother was failing and in fact she passed away later that same day at 96. Her funeral is the day after tomorrow.
Since I progressed on Taxol, I took a three-week break, then started Doxil this week to see if that might slow things down and buy me some more time.
Although for the most part I've felt well over the past 6 years, this last year has been difficult and the last four months have been pretty bad because neuropathy has crippled me in my hands and feet very severely, so I'm basically disabled at this point... just shy of needing a wheelchair. I'm not in any pain, however so I remain grateful for that. I'm grateful to have family here to help, I just worry so much about my husband's psychological well-being. I'm the tough old bird in the family and he's always relied on me and I feel so useless in helping him lately. Just trying to keep my head on straight for both of our sakes.
So after Doxil, whenever that will be, I guess it will be on to palliative care. I'm just not up for a clinical trial anymore.
I sailed through AC in 2015-16 so I'm hoping I will do okay on Doxil, since it is a form of good old Red Devil.I did take some Compazine for a couple of days but it turned me into a zombie, I couldn't keep my eyes open! I stopped taking it and I'm not having any nausea, just the usual extreme fatigue, so I'm hoping I'll be able to make it through the funeral tomorrow.
Thanks for listening everyone. I'm keeping my hopes up for each and everyone of you. My priority is spending as much time with family as possible and make some more memories with our six and a half year old grandson!
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Hi Kattysmith. I am sorry to read of your troubles. I pray Doxil is kind to you and gives you more time- quality time.
Nicole- Hope you are recovering ok. Post when you can.
LFF- Wow, you did need blood with those numbers. Hope you are more "perky" now.
I am reading along. So many with issues--serious issues. I am still waiting on insurance paperwork to go thru so I can do my consults. Then, I will need to make some decisions on what route to go. I know I don't have it so bad right now, but I know, in time, it will come. It comes to all of us.
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MOTH...thank you for remembering me. Well it was rough. First..they were running 2 hours behind..so my poor husband had to wait in the car with our puppy for 6 hours!! If you are wondering why he didn't just go home and go back..its because the place is in DC and the traffic from where we live in VA to there is a NIGHTMARE..yes it really is THAT bad..it is rated the #1 highest traffic are in the country even higher than CA...yup.. lol
Anyway...last night I had a fever...pretty high too 102.5??? We called the service and decided to take 2 motrin and wait and see...it broke around 1-2am...and I feel much better today just worn out and the area between my neck and shoulder hurts...but other than that...I am ok. We are scheduling Y90 mapping for Aug 5th.
Candy sorry for the added stress I can say I completely understand went through that with getting the afinitor. I felt like I had to do everyones job for them!!!
LFF..I am glad you got to go home!!
PS: SAULIUS...I am beginning to think you were right when you said ( A LONG TIME AGO) that we should have hit this hard in the beginning as a first treatment line...like....doing a TAXANE chemo first...then went to IBRANCE...I am so mad now...going though Ibrance/Let/Faslodex...then xeloda, doxil...eribulin...afinitor....all a waste..I bet I should have done Abraxane first....
We will see what biopsy has to say....
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My heart goes out to y'all. Some days it truly feels like a battle and we get wounded, battle fatigue, and PTSD. You all are wonderful battle buddies. 🥰
My stuff seems minor compared to what many of you are facing. I was just diagnosed with a strep B UTI, a week after my urinalysis. More antibiotics.
My step mom is in the hospital with multiple issues following two rounds of chemo for pancreatic cancer. I can't even talk to her because she has speaking issues from throat cancer 20 years ago. My dad isn't sure if she'll come home. He went through cancer with my mom. I have metastatic cancer and my sister has metastatic cancer. My heart just breaks for him. He is 83 and lives 12 hours away
Today is a day for finding little joys, to be thankful for the gift of today. 🦋
Dee
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Dee please take the probiotic called Fem Dopholius....its specifically for UTI and Vaginal Tract only has 2 strains in it. I have been taking it for 3 years. I had a recurrent UTI for 2 years ...that cured it!!! It took 3 months to build up in my bladder and never had another UTI since. Get the refrigerated version ONLY not the shelf stable.
Has anyone heard about JFL????
Also HOPE...how are you I have not seen you!!!!
I wanted to say something else here.... Do you all remember that I was off all cancer meds for 4 months after my Y90? Then the afinitor failed (3 months) so essentially I was off all meds for 7 months...its literally amazing that I am even still alive with a grade 3 cancer...seriously...that is all PRAYERS from so many people that have been praying for me...I truly believe that.
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Nicole- Dang girl, you do have rough times. I have had 2 liver biopsies and no fever with either one. And the last biopsy was 3 hours long due to multiple attempts from different angles to get enough sample (fibrous tumor per IR). Take care. And praying for good results for you that will give you more info to work with.
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Just a quick question, has anybody had success with Letrezole as a mono therapy for Liver Mets?
Thank you
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So ya'll wanna hear something strange.......
I stopped the Afinitor a week ago and my "bites"...went a way.!!!! I think it was actually fueling my cancer to grow!
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AlabamaDee - so sorry to hear about your UTI, (hoping the antibiotics will work), and that your family has been attacked by this vicious disease. Man -sometimes it seems that it just never stops! I had my port placed yesterday -sore today, but not so bad. 50% of immune cells stain for PDL1, and my tumor mutational burden is in the 90th percentile. My MO says that's unusual for breast cancer. I will be starting keytruda with Taxol either Tuesday or Wednesday.
All you lovely ladies and gentlemen are in my thoughts and prayers. You all exhibit so much strength. Strength that I have drawn upon to help me through my journey, I thank you all!
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Kattysmith, thank you for telling us about how you're doing. I'm sorry to hear that you got "the Talk." It comes across through your words how much you love your family, and how you are facing this and holding your own under the gaze of this terrible disease. Your words are moving to me, truly.
I'm in the hospital again with some stupid problem that has yet to be determined. My previously stable and mild lymphedema arm has blown up into something huge. I lost the use of my right arm and hand in the last couple of days. No clot I'm told, but it might be the result of disease progression.
Nicole, Candy, and Dee, I'm hoping that things improve for you too. It feels like it's always something with this disease. We need better treatments!
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leftfootforward you are in my thoughts and prayers too. Big hugs. I hope to handle my situations with as much grace as you do.
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You all actually amaze me with how positive you all are. I am so thankful to have found this group. I already have a much better outlook on everything. I really thought this 2 weeks was going to drag on waiting to hear what’s next but I’ve been doing well. Each day gets a little better. My daughter makes me smile bigger, I’m finding little things my husband does to be really thoughtful and sweet (instead of nitpicking what he doesn’t do) and being extra thankful to my mom, who is 58 with her own medical problems, and still helping me with anything I need. Idk today was good.
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sheilaleximama, just remembered I was supposed to PM you the article. Going to do that now!
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AlabamaDee: thank you for your reply, I hope to stay on Ibrance as long as possible and testimonies from others give me comfort.
moth: NCCN patients guidelines and especially Bestbird were exactly what I was looking for! These are precious information for me and I am grateful for your reply!
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do reflecting on this week I learned to listen to myself.
I had my son purchase a blood pressure cup gor me at home because I was dizzy every time got up from standing or laying.
I took my daughter raspberry picking but had to sit down half way down a toe. I tied getting back up but found I was too busy to do so. I sat long enough for my daughter to finish picking that row snd felt like I could drive home. I had to skip the blueberry picking.
I had my sons drive me to the store if I needed anything.
All of these things nagged at me, telling me I wasn’t feeling well. I kept saying in a fe days I will see my oncologist and I’ll talk to her about how I had been feeling.
I knew something wasn’t right but I kept fighting and saying it can wait until Wednesday next week at my appointment.
I was lucky. I learned that I need to listen to that quiet voice that is telling me I know something is wrong.
All this is a long way of saying trust yourself. Listen to your body. Don’t be afraid to say anything.
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Uh, dear Nicole, crazy about Everolimus:/ With your strength (7 months without treatment, whoaaaa....), you could have easily done Abraxane (sort of a "friendly" taxane) first, but it is what it is, and it can work well even now, after you get another Y90. I am just worried about you remembering how difficult Y90 was the last time. Prayers your way all the time!
Dear Kattysmith, no, nothing is over yet, I am sure. You are one tough lady, and we all need you so much. Big condolences for your mother in law, your family and your husband. Please hug your grandson tightly for all of us.
Dear LFF, your positivity is so inspiring...
Our latest news - ultrasound yesterday: all clear except for 3 small lymph nodes under the collar bone - seems surgery did not find them and they are left, crap! All 3 are only 2.5-3 mm, soft (that is good) and did not change in size in over 7 months. Ultrasound guy thinks they are dead or "sleeping", he urged us to relax, continue treatment and come back for regular check'up in 3 months. Sandra feels amazingly well and absolutely healthy (I will post a photo of us in one wedding last weekend), her Ca15.3 was at 9.9, CEA < 0.5, all blood counts, sugars and liver numbers are better than when she was healthy... Maybe these LN are really dead, as previously CT did not see any of them? I mean in full body CT Sandra is absolutely NED, inner organ MRI (with liver) is absolutely clean... so are we NED? Ahh... I know our problems seem like a joke compared to others'... sorry, for this rant but I had to write to someone who understand us.
Saulius
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Saulius, what a wonderful picture of you and lovely Sandra! And it sounds like your news is indeed all good so I am cheering from Texas!
And thank you for your kind words and reassurances.
As Yogi Berra, a baseball legend, once said, "It ain't over till it's over."
Peace and comfort to one and all.
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Buttons machine, thank you for your kind words about my predicament and I am keeping my fingers crossed that your lymphedema issues will be quickly cleared up in the hospital!
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Salius,
What a lovely Picture of you and your wife! So nice to put a face to a person that has been so supportive to many of us here
Rant away regardless! This disease is just awful and even if theres NED everywhere else, it's never easy knowing theres "something" there. It almost to me, feels like a ticking time bomb that may never go off ( that's the hope anyway) Sheilaleximama, I'm glad you're coming around. The dust does always settle and I find there are periods of feeling okay, and periods of feeling like " wtf this sucks" I remind myself that I'm allowed to be angry at this sometimes.
My CT got moved up to tonight from Aug 11 and my MRI will be staying the same (aug 12) to keep some sort of regular interval. I stopped the tamoxifen as per dr's orders, just to see if we can narrow down what's happening. Fingers crossed it's nothing but a GI issue. I'm trying to remember being off my meds for 2 weeks is not a make or break type of deal, but it nevertheless feels vulnerable. Send good vibes my friends.
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Looks like my wife, Polly, is losing her battle with the MBC in her liver. A week or so ago she got through the surgery to remove the tumor on her brain shockingly well, but while that was happening and she was off chemo, the liver mets have run wild. Her liver enzymes are in the 500's and her belly is extended like she's pregnant. This is all due to the liver. Although she's not yet jaundice, her MO expects her to be soon. As a result of all of this, yesterday her MO recommended hospice care. This is a difficult pill for us both to swallow even though we knew we'd eventually get there. You never think it's going to be this soon do you?
Although I don't post much on this thread, the strength, courage, and optimism expressed by you ladies have been a buoy to me as I've navigated this difficult, difficult journal on my wife's behalf for the past 2 years. I thank you for letting me participate, and I wish you all peace and pain-free days.
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BLMike- My prayers are with you.
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Dear BLMike, you both are in our prayers. This is so unjust:/ Maybe someone in heavens know the real purpose of all of this... Saulius
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Dear BLMike,
I'm so sorry to hear this about your wife. I'm sure you will comfort her just as you have been doing all through her MBC journey.
Prayers for you both.
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Dear BLMike,
I am holding you and Polly close in my heart. I am so, so sorry.
Katty
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Dear Saulius,
Lovely picture of you and your wife. You both look wonderful and relaxed.
Here's hoping that those lymph nodes settle down. Focus on all the good reports you've been getting.
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Saulius- beautiful photo. Thanks for sharing. Lymph nodes not changing and docs who aren’t concerned is wonderful. Celebrate your wife’s and your well earned victory.
BLmike- my thoughts are with you.
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Dear BLMike,
My heart aches for your dear wife and you. You are both in my prayers
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Oh BLMIke, So sorry to hear this . I know how much she means to you. Thank you for being a presence here and sharing her story.
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Saulius - what a great photo of your wife and you, thanks for sharing.
B-A-P - sending good vibes for a good outcome on your CT today.
Kattysmith - thoughts and prayers for you
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BLMike, I am so sorry to hear about your wife's worsening condition. You are both in my prayers.
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