How are people with liver mets doing?
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LFF - thanks for the explanation. I am sure you have a bunch of specialists working this out. I pray that they find an answer. Our bodies try to be forgiving of the abuse we put them through, but these meds are hard. Hang in there...I am sure they will figure this soon.
SP - sorry about the news. Hope they can turn this around soon so you can have some relief during this remission
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Shetland and Leftfoot sorry for your disappoints too.
I guess when it rains here...it pours
Thanks Bev and Candy and Bliss and Moth.
Hope...again you are source of strength filling my cup and not just mine but others as well.
Love you all so much.
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Ya’ll are such great encouragers. You give wisdom and compassion to each other
I feel everyone’s pain and frustration and fear. Let’s all live well in spite of the side effects, lost hair, bad reports and uncertainties.
We need to process the crappy news, mourn the losses and move on to what good we can find in each day for the gift it is. that looks different for each of us.
I don’t mean to come off cliche but just feel the connection with this group who are truly the only ones who get it!
Dee
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I just logged in and I was so upset to read about the struggles of my fellow liver metsers..Shetland, LFF, Nicolerod.
We live only to get beat down by cancer,: the treatment or our body's betrayal.
But you guys don't give up and I read how hard this is in your words that you post.
We are listening and I am hoping for resolution and improvement with each of you.
We sold our home and using all my energy to sort, pack, move. I will be closer to my oncologist and hospital, but moving to suburbs. My free spirit is now caged.
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sandi - your spirit is free and can never be caged. Let it be free. Give your new home a chance to become a home. I understand how hard it is. We did not ask for this, but we must face it daily.
I read this the other day (or something close): "God gave me this mountain to climb to show others how to do it." I am trying very hard to think of this terrible disease as something beyond myself. We are all here helping each other climb our mountain. At first I avoided this blog because I was so scared and didn't want to face this, but now I feel all the love and support of people who don't even know me, but understand what I am going through more than family or friends. In the midst of all this, God has given me the gift of loving and caring people. We don't see the mountains other people have to climb, but I pray they are able to find such people to help them too
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sandibeach
Selling your house is such an emotional, physical and even spiritual big deal. I can understand the deep feelings
I hope during the packing and sorting, you can find something to be thankful, something that brings a sweet memory, something that helps you to let go and start fresh.
Hugs,
Dee
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Hope...I love that. I read this the other day...." Sometimes God moves the mountains...and sometimes...God uses the mountains to move us"......
I KNOW 100% He is using this cancer to move me. He is actually answering a prayer I had made a year before even being diagnosed Stage 2-then 4. I prayed for God to help me enjoy Him and for him to be real to me....and more. I am stubborn and fleshly...it took this MOUNTAIN...my Stage 4 to MOVE ME! I turn to Him now all the time. I try to be like Job and just trust even when its horrible. Hope and Into the light...you have pointed out to me how OK it is to cry and that doesn't mean I do not trust Him..it just means I am sad...or disappointed in things. So my point is..I agree with you...I LOVE all the LADIES here..all of you that encourage me...all of you that lift me up in prayer...all of you that have suffered with. me this past year and half with EACH and EVERY FAILED TREAMENT! All of you that have been angry when my treatment has failed and that I haven't been able to catch a break. My mere words could never express how close I feel to you all. And thank you to those who do not really post much but reach out in private messages to me.
I love you all!!!! You are ALL a BLESSING FROM GOD!!!
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Somehow I missed a couple posts here.
SP, so sorry you now have adrenals to deal with just when you were coasting the NED wave. Ugh, it's always something else, isn't it? You so deserve a complete break and I hope you get resolution in the coming weeks.
LFF, always thinking of you and hoping you get resolution very soon.
Hugs for all those dealing with struggles.
Happy dancing for all those celebrating good news.
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Nicole and Shetland - hugs to both of you.
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Shetland what TX will they give you for adrenal insufficiency? Years ago I had to have my left adrenal gland removed. Now I take spironalactone. My adrenal gland was malfunctioning and producing too much aldosterone. That caused high blood pressure and low potassium. I hope they have a TX that will solve the anemia problems for you.💞
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Nicole, let it all hang out for now. There's plenty of time to pick yourself up and dust yourself off later after you have rightfully mourned these latest set-backs. I am so sorry for your pain .
You will be radiant at your son's wedding and it will mean the world to him for you to be there.
Shetland and LFF, 'm holding y'all in my heart, too.
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Uh, so much has happened here while I was away. Sending all my thoughts to everyone who goes through hurdles..
Dear Nicole.. my wife has been bold twice in 15 months (end 2017 and then beginning 2019), and she was/is/will be the most beautiful for me no matter what. While shaving her both times (I now know it takes courage to do it) my heart cried and there was that feeling of "this is it" but actually... it was just a chapter, and so will be yours. What I am always doing when I feel bad is... I take a big sheet of paper and write down all the bad things I know about the situation, and then another sheet where I write all the good/positive things about same thing. And you know what... in 100% of times good out-weighted bad. Again, I am sure your situation is not hopeless - you need good news though. You'll find a therapy that works, I am sure. Just think... this therapy is probably already working, as you live these difficult moments. Just remember, you yourself said before that your tumor burden is considered low, and that is just one positive thing among many that you know and could write down. Hugs,
Saulius
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it seems to be complications and bad news week for the liver sisters team. Nicole, I've lost my hair 3 times and actually told my MO that among all the side effects, losing my taste losing my hair were the two that affected quality of life so much I would rather not take the drugs. Funny thing (not funny ha ha but nevertheless interesting) is that more knowledgeable folks associate no hair with early stage disease and hair with metastatic--not knowing that we are constantly losing it, having it thin, having it grow back--my hairdresser just shakes her head, there are so many lengths of hair due to hair growing in and being lost. The main message is that it doesn't signal only a few months left! Just another crap part of this journey.
Leftfootforward, Dee, and everyone else going through complications and bifurcations--thinking of you.
My three units of blood kicked me up to just below normal again and my CA 15-3 is also down a little more to 745 (ok still astronomically high but half of what it was 2 weeks ago). So no complications here. best, AMY
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Arolsson Thanks.
Saulius... I really appreciate your words..and I know my family and friends "think I am still so beautiful" and I especially know my husband feels this too. Couple of things though.... 1. Its not just "the hair"...its what it is saying ...I look in the mirror and cry I feel like I don't even know who that person is looking back at me...and MOST of all I do NOT feel FEMININE! No matter if I have make up on ...pretty earrings....etc.... I still DO NOT feel feminine..and that is so important to me. I decided NOT to reconstruct after my mastectomy and the ONLY time I have every wore "knitted knockers" or the like is for the Marine Corps Ball...I never felt unfeminine...I never felt ugly being flat...never...but this...is just different. On top of that...I know everyones thoughts and feelings that I shouldn't think "this is the beginning of the end"..but you all also know my history...NOTHING has worked so it's kind of hard not to feel that way. I know most of all you all can relate to feeling that Stage 4 just chips away at you...we slowly lose pieces of "us" whether its because we cannot do the same activities due to pain or fatigue ...or can't eat what we used to or do not look the same...etc. It just sucks.
I had a major meltdown this morning..and maybe I needed that...I called my best friend and just yelled and sobbed and yelled and sobbed...and...yelled and sobbed. Then I went to the wig store.
Saulius also please understand..your beloved beautiful wife..is HER2+ and responding to Herceptin....she can live 10-15 even 20 more years easily....but for those of us that have Bone and Organ mets and are HER2- we don't have that same option not even close especially those of us that are Grade 3 and now I have cancer in my C7 dangerous spot. Anyway...I am beyond happy for you you and your wife and love your optimism...but I also need to be realistic. JFL I know you, must understand what I am saying here!!
and even you got WAY more time on treatments than I did...It's not looking good here.I guess it's gonna just take some time to get over the fact that I will probably never look like ME again...I will never look like the me before Stage 4....and that just stinks so bad....
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Nicole--- Yes it stinks so bad. You are being real. Truthful. I cannot compare myself to you-- I am still on first line therapy. But I admire what you are saying. No sugar coating it. Stage 4 is not a "chronic" illness. It is what it is. And it takes and takes. Hugging you from here.
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my first line took my hair but I'm the oddball person who doesn't care about the hair.
We are all so different but we all suffer and grieve for the things that are important *to us*
I'm still bitterly grieving having to quit school & losing my 3rd or 4th or whatever career
<sigh> This stupid disease.
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Nicole - I cry with you and hold you close in my heart. This disease is unfair and unrelenting. Our bodies and spirit do the best we can to be strong, to face it head on, day after day, but sometimes its too much to bear. We are all here with you, even if our journeys are all a bit different. We are by your side.
I know your faith Nicole. You are not alone even if it feels that way. He will be with you through all of it. Hold tightly to your faith, let it give you strength and hope. No one knows the future with certainty
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Dear Nicole, you have the right to feel the way you feel, and I get what you say, believe me. I cannot agree with you on her2-/her2+ topic though. Metastatic her2+ people are not doing better than her2- in any way, and response to her2 targeted therapies today does not guarantee any response tomorrow, same as to all therapies, but that is just not the point here. Your situation is as unique as everyone else's, and therefore a unique solution must be found. As I said before, you need good news to lift you up, and that can come from many sources - you, second/third opinion MO, drugs working, etc. I am really sorry for what happens to all of us (I say "us" because when my family member is ill, I am ill too - that is just the way I am). I am sorry I am optimistic too... but I have to be - what else can I do to comfort you and myself?... Saulius
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Saulius don't be sorry for being optimistic...that is a great thing. and it's not that "I am never optimistic"...but after a year of failed treatments and my close family and friends not really understanding all of this I vent my "not-so-optimisitic" stuff here for my Breast Cancer family (you all) You and I will have to disagree about Her2+ and HER2-... and thats ok...its ok to agree to disagree. I have met numerous literally more than 10 women on FB that are HER2+ and are over 6 years and more out...heck there is one on here on this site that is now 20 years out. I have yet to find more than 2 people over 10 years from diagnosis with bone AND organ mets (from the start). ... even if there are 1 or 2...that doesn't compare to the women that respond to Herceptin.... btw you are still one of my dear friends here ((((hugs))))
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Candy thanks (((((hugs)))))) 🤗
Hope lifting you up this morning in prayer 🙏
Im feeling better today. Cried my heart out yesterday with my husband...found a wig I think I like...then when I got all good. My husband had to now buzz me to almost bald because I have so many bald spots...
. need to wear a hat now till the wig comes in and I get use to wearing that 0 -
NicoleRod, I understand where you are coming from. It is really depressing to go through treatment after treatment, put up with all the side effects only to find out that it did nothing for the cancer. I went through that phase too. For 5 years, I had mets in the bones only. I was diagnosed with mets to the C7 and the tumor was large so I got a cyberknife treatment to that area.
When a liver met popped up last year, I changed my treatment center to MSKCC. Here the MO took an aggressive approach and a couple of treatments have worked for a few months to keep the cancer from progressing.
Hopefully this treatment that you are on will work.
We are here to hold your hands and pray with you, for you. We are in this together.
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I was a hairdresser for over 30 years. I've lost my hair three times. I used to go with my customers to buy their wigs. I've shaved so many heads I've lost count.
Here's the deal, it never gets easier. I cried shaving my own head and I cried shaving my my customer's.
So far, I haven't had to lose my hair with this DX. PTL. I honestly don't know how I will do it a fourth time. So much for being strong, right?
I have let my hair grow long and wear it in a ponytail or bun. Most of the 72 year-old ladies I know don't have a long, white ponytail. Most don't know the real reason that I do. I've sworn to keep it long until I have to lose it again. That's how my mind works because of MBC.
The combination of things we have to do is staggering. By far, most of our friends and family don't get it. Thank God for all of you here who do get it💞
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Grannax- Your post was beautiful. I have lost my hair once, so far. I cried, and my hairdresser cried with me as she shaved off the remaining bits. I dread it happening again, though I bet it will sometime during this journey/fight/whatever you call this.
Yes, our friends/family truly do not really understand what we go through.
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I was told today that I would be adding a new treatment Rittuxin to my anemia to my regimen. I guess it is a 4 hour infusion once a week for a month at a time . Ugh. It can’t be given at same tome as my kadcyla so my days are getting very busy with work and treatment. Good news is I can get off these high dose steroids.
It never end
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I have in my closet two wigs, some hairpieces, a box of bandanas, and a box of caps and scarves. I am prepared for the seasons of mbc hair the way most women are prepared for the spring, summer, fall, and winter. In my six years of mbc I have been bald once, as good as bald another time (which was worse), had thin hair, normal hair, long hair, short hair, and the horrible mullet stage. Right now I have wild mulletish hair growing out from a very chic post-nearly-bald short cut that I can't get redone because of covid, and also because I want it longer to help cover the excess facial hair (particularly on the sides of my face) that my drugs have caused. This bothers me a lot! Seeking laser or something...
I try to take the hair changes in stride, but I have shed some tears, especially when I looked around at the other ladies in my dance group, with their long, pretty, REAL hair. I have to say the right wig is a wonderful thing for special occasions. I like it when it passes for real and I get compliments on my haircut. Heh heh.
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LFF, sorry you have to spend more time in the chair. With my clinical trial I end up going to the cancer center almost once a week, often for the whole day. It’s a lot. Good you can be off high-dose steroids, though.
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Moth, I wanted to acknowledge your losses regarding school and career. Cancer steals things that are important to us. It’s terrible. Do I remember correctly that it was nursing you were pursuing?
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Question for group- I posted on the Ibrance Thread too. I am having trouble with my white counts lately on Ibrance. We are going to try to tweek scheduling. But if that does not work, and I have to leave Ibrance, can anyone give me some info on liver mets exploding after Ibrance failure?
I had read here that liver mets can grow quickly when Ibrance fails. This is not really " Ibrance failure" since my scans are stable so far. But if I stop the Ibrance will the liver mets go wild?
Any research on that?
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ShetlandPony, thank you! Yes, when dx'd stage 4 I was exactly 1/2 way through an accelerated BSN to become an RN. It was very much a passion project for me.
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Candy sorry about your white counts. I have read many peoples testimonies on FB MANY about what was described as "explosion of mets" when Ibrance failed...but that is not everyones experience. Mine didn't grow out of control but then again I was only on it for 4 months but the way I think Cure-ious (I think it was her) describes Ibrance is that it puts the mets to sleep...it doesn't kill them like chemo...so when they wake up...its all the ones you originally had and then maybe new ones...
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