How are people with liver mets doing?
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Shetland, I can't imagine having to deal with a illness with DH, especially of unknown specifics while we are dealing with me. All mine has is a back problem that he had an MRI for today. But nothing as serious as an internal illness. The stress has to be intense. I hope you are still able to keep on dancing doing what you love so much.
Z , I hate to hear of you feeling tired too as it is so un-characteristic. I hope you have a chance this weekend to recoup and relax. Glad to hear the scans went well though! You asked how we are all doing so.....my TM's are going up as well, one at the 1000 mark. I feel some new persistent jabs in my lower right side, just above my pelvic area, so am worried of course. CT and bone scan in two weeks.
Forgot to say welcome last time Photogirl. Love the floral pics and am feeling melancholy for you when you said you may have to curtail some greenhouse activity because of Xeloda.....But have heard some great reports of results too so first things first right?
Stephanie, sending good vibes your way for Xeloda too. We are always afraid the meds won't work but mostly I've heard great results.
Louis, I agree that the liver has an amazing capacity to heal. Maybe the break from chemo is the perfect thing for now. She can regain some strength and give her liver a break to regenerate. I'm sorry for everything you are going through and I know it's a small thing compared to everything else. But I feel sad that you may not make it on your trip to Disneyworld.......
Nice post buras, it made me smile! I'm so glad you made the trip. It must have been gorgeous!
Good news letmywife!
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Thanks for the update Artist. Sorry you are dealing with twinges and TM's rising. It is not a good sign, but it's all about the scans.
I think my fatigue is just coming down from scanxiety. Whether the results are good or bad, its quite a ride. You get good scans and the reward is ... four more months of wondering if the current treatment will fail. Yes. Less than 18 months into this and I am tired of the whole thing.
I am curious how everyone is doing. We've had some crises that have got our attention ... interested in knowing how everyone who is just plugging along ... is getting on.
>Z<
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Shetland. Please keep on dancing. That's your joy. This disease takes too many things from us don't let it take your joy! Even after being in the hospital Friday I took a car service out to my sons house to go on rides with my granddaughters yesterday!!! I don't see them very often and a day with them was planned which I would never give up. They are a major part of my joy!!!!
Louis sending you and KD prayers that this break will do as Lynne says-give KDs liver a rest to recover.
Stefanie. I'm hoping Xeloda is your answer. It was my best treatment to date
Today is lunch with my Dd and her friends. I intend to live my life to the max while I can
Babs
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Thank you Z I will give my experiences that is truly helpful. Stefanie I think I'm 2 week ahead of you on the Xoleda. I hope it works too. I'm terrified since Ibrance failed me and Faslodex failed me too. I'm still getting Xgeva which is for the bones. The counselor at my normal MO had me pretty scared but so far I feel great. Little nausea but now I take a anti-nausea pill at night so I can function during the day. I'll keep my fingers crossed for you!!!!
Artistatheart, thanks for the welcome. I know I'm used to working 12-14 hours a day in the greenhouses designing pots growing, germinating and watering and now I have to be really careful. Good thing I have a big family and some good helpers but I'm not used to slow gear that is the problem. At least I still do all the photography for the business as well as wildlife. Oh well I hope you are doing as good as possible too. Thank you for the welcome again.
Enjoy your Sunday everyone. It's cold in Upstate NY.
Hug
Anita "aka" PHOTOGIRL
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PHOTOGIRL, welcome to this wonderful group of women and a few of us men. There is a tremendous amount of wisdom in this group, and also with the bone mets group which I'm sure you are a part of also. Please don't hesitate to share some more of your pictures, including wildlife. Your baskets were beautiful by the way.
KD is getting stronger by the day. This morning, the MO making weekend rounds DC'd her catheter and both of her I.V. antibiotics. It was wonderful going for a walk around the floor "unattached". All of her lab numbers are improving, with the exception of her liver numbers which at least are holding stable.
I have not disclosed to KD all that I know about the status of her liver or about "the talk" that I had with the other MO. I don't like keeping anything from her, but I wanted to be fully sure of her status before I informed her. Anyhow, we will certainly lay everything out in the open tomorrow morning during our visit with "her" MO.
So, we continue to hang out for another 18 hours waiting on our meeting. I think I will roll my Princess downstairs for a bit of fresh air and sunshine right about now. ☀️🌹
Wishing all a pain free happy day today.
Louis
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Wonderful news, Louis. Your princess is on the mend. This will be over soon.
>Z<
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Louis, I am so glad to hear this! Enjoy the sunshine!
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Louis so glad KD is doing better. Take her for a spin to enjoy the sunshine!
Babs
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Louis, I am happy that your dear wife is feel better and has more energy. It's always a big step to get unhooked from all those tubes and walk around unencombered. I often wonder how often patients trip over the apparatus or end up with the tubes wound around their bodies. It is good that her liver numbers have stabilized. I do hope they begin to show improvement soon. We all look forward to hearing KD's MO's assessment and new plan.
Lynne
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Louis, thank you for your kind comments. Once in a while I feel like putting on some of my wild life that reminds me of all of us. Maybe I will. I have been following your wife's progress and it sounds like she improving thank goodness. Since I have joined this group, I never feel alone or scared. It gives me so much hope and encouragement. This is a amazing group of BRAVE and loving woman and men!
Hugs to your wife and thank you again for the compliment on my flowers.
Anita
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Louis, yourwife may be a princess , but you are a true prince. She is lucky to have you loving and supporting her through this.
Anita, we seem to be in very similar places. Let's be successful together!
Shetland Pony, I agree with babs...you just keep dancing. You aren't going anywhere anytime soon, so enjoy yourself and do what you love.
Z, 18 months is not that long. You may well still be in shock that you are having to deal with this in your life. I think it took me about two years before I snapped out of that. Eventually, you're body will Be more tired of stressing over the cancer and over the subsequent treatments than it will be of the cancer itself. I'm not saying it won't always suck, after all cancer is a thief of many things. I just think (or hope) that time will relieve some of the associated anxiety.
Hello to everyone else.
Just finished day one Xeloda.
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Stefajoy - Thank you for your kind note. Oddly shaky last week. Random crying. The problem with scans is that even if they show improvement, it still says in black and white that I have cancer. I guess I am still in shock.
I always suspected that everyone in Los Angeles is beautiful and glamorous. Deanna laughed at me for this, but looking at your new photo only confirms this.
>Z<
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hahaha ..I'm not beautiful (in any classic sense anyway) and I'm definitely not glamorous. I never wear make up and I spend my days in Work out clothes. But, I was dressed up for a school event last night, and I did look damn good. So I thought I would use my most beautiful picture as my avatar...why the hell not.
But thank you for the compliment.
Strfanie
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Zarovka, artist, beautiful Stefanie, babs -- thank you for the encouragement to go for it with my dancing. I am doing that. I am daring to make plans. I just hope cancer stuff doesn't interfere at a critical time. I hope my body and my energy stay ok. I'm afraid some may blame me if my status changes. But any of the others could twist an ankle tomorrow, right? I agree, Babs: Live my life to the max while I can. And that means whatever max is possible under whatever circumstances.
Thanks also for the concern about DH. It is more of a chronic than an acute thing, and it really impacts his/our quality of life. Two tired people trying to muddle through, when we should be enjoying our time together and living the way we want to. We are finally zeroing in on a rare diagnosis and from there, he should get some help! But it is so hard to wait for the slow machinery of doctors offices and insurance. Fortunately/Unfortunately, I have lots of experience with medical stuff, and I am working hard at keeping things moving for DH.
Momall, please take care of yourself, too. How long has Dani been in the clinical trial now? Louis, it's great you and KD got to take a walk outside today. I'm sure we will all be looking for news whenever you are up to checking in on Monday.
Zarovka, you said it. You get a good scan, and it only gets you more wondering if/when the current treatment will fail. And you know, if you get a bad scan, then it's a new treatment and back to wondering if/when the current treatment will fail. I've been thinking about that. If it's all scan, treat, repeat -- what's the point of worrying instead of just living in the moment? Of course it does matter a to us that a treatment work for a long time. It's just that sometimes these days I glimpse the pointlessness of worrying. I don't know, this is just a half-formed idea of mine; some stage in dealing with it probably. Another thing is that it's hard to let go of the idea/feeling that I will get done with cancer and get back to normal. Like the test results are going to come back and say I am permanently cured. It's not a rational expectation, but it is there nonetheless, because who can really believe this is happening? (Although I do have hope that something new will come along for us that does make a cure or a normal lifespan more likely.) Stefanie is right that eighteen months is not very long to adjust to this. Sometimes after a scan, I think it can be like being diagnosed again. Finally, I sometimes think my healthy lifestyle improvements have been in part an expression of the bargaining phase, and I am rebelling just a little bit now, since it didn't keep the cancer away. Or I'm just tired of it and want to be normal like other people who can slack off and not worry that terrible things may happen because of it. I know that these healthy lifestyle things must have kept me healthier than otherwise, but still. Sorry, rambling.
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Shetland, it's not rambling when every word makes complete sense to me (and most likely everyone on this board).
Stephanie, I am no prince. Here's the backstory on my Princess's nickname.
Before we got engaged, KD decided she wanted a "princess cut" diamond for her engagement ring. The weekend after I proposed, we went on a couples retreat. When we got there, everyone wanted to see her ring. We were the youngest couple on the retreat, so they just started calling her The Princess.
At lunch, I spoke up and said, "Well, if she is The Princess then we all know what that makes me." Just then, from the other end of the table, our friend Dave blurts out, "Yeah, that makes you The Frog!!" 🐸 Truer words have never been spoken. 😂
Thanks to all for your prayers and concern. It's been a long weekend of waiting. We are ready, or at least we think we are, to meet with her MO this morning. I will update with whatever transpires.
Louis
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Hi everyone! Wishing us all a good week. Scan coming up this Friday, so anxiety is starting to kick. Hopefully, Kadcyla is still working it's magic.
My hubby and I just got back last night from a lovely week in Italy. We both gained 3 pounds each, even with walking for miles and climbing the neverending stairs :-) I must admit, I haven't drink so much wine and beer, even before my diagnosis.
I *almost* forgot about having cancer for most of the trip, until I saw the coverage of the healthcare bill vote, sigh. Then, I started wondering if this is the last trip we are going to be able to afford and so on. You know how our minds take off...
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Hi gramen - what a wonderful trip. good luck on those scans. apparently no one actually read the health bill that passed, including the budget office. it's just for show. we'll see what comes out of the senate. i am worried myself about the protections for pre-existing conditions.
Shetland - makes sense to me. scans do bring back all shock and trauma of diagnosis. worrying is pointless, but i am apparently still processing the whole situation. i think i can slowly slip back into denial ... until late august.
>Z<
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Louis it's such a cute story. Well she kissed the frog, that's what matters. Waiting with you.
Shetland every line you wrote is so true. I could read and re read it. I live it through Dani. But also feel the same way. Plans are never plans, you gotta wait for scan time, then the results then if and when they will call her to come running in to either start a tx or go for rads. It's the constant - i'll get you. In between you try to make sense of this life, and actually do something. It's truly beyond words.
Stephanie well beautiful it is.
Gramen italy? oh my, good for you, 3lbs only? here is for good times.
Zar you know it's hard to just keep going and going...sometimes it's all too much.
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Louis, I've been thinking of you and KD all day. I do hope your appt. went well today. Prayers for strength to you both whatever you may face.
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Hello BCO friends,
Another long day. We did meet with KD's MO this morning, and just as I figured he is optimistic that she can rebound somewhat from all that she has been through the past 2 1/2 weeks. He is hopeful that she will be able to return to Halaven at a reduced dosage at some point.
The plan right now is to minimize the meds she takes this week and to keep her as hydrated as possible while having her eat the simplest foods to digest. All this to accomplish just what a few of you said.... to give the liver some rest so that it can recuperate.
She will be taking a couple of different diuretics and a powerful laxative each day to assist with elimination. We have to watch her like a hawk though for any signs of possible dehydration.
We came home from the hospital today around 3:00 today. Both my boys had annual checkups at 4:00, then my oldest had a 6:00 baseball game. Life does not stop for cancer, you know.
It seems that every time I post, I am "watching my Princess sleep", only this time it is in our own bed and I will soon be asleep along with her. 😴😴 Counting that blessing for sure.
I promise to pay more attention to what's going on with the rest of you this week. I'm feeling kind of "us absorbed" here lately. But, I will be praying for all of you in just one minute.
Peaceful rest to all,
Louis
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Good night to Louis the Frog and his lovely princess KD. And your kids too. Blessings hugs and heeling. Praying for nothing but improvement from here.
>Z<
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Hi, all. Has been a bad day. Received confirmed PET/CT results today and I have significant progression in liver. Not the liver "explosion" I had last year but definitely significant progression. I feel great and had no signs. My DH is devastated which makes me feel terrible.
Considering next steps - my first line was aromasin/faslodex/ibrance and my second line is currently xeloda. My MO had afinitor/letrozole planned for third line but I am considering doing a chemo first - as both of my progressions to date have been my liver and I have a lot of liver involvement. Also, I am a little spooked about taking afinitor because I heard it makes cancer more aggressive. My MO mentioned that I could do taxotere with a cold cap to preserve my hair before starting afinitor. Didn't realize they used cold caps on stage 4 now. I am bouncing around those options plus a few others in my head. Also, I am going to Europe next week for 10 days, so I plan to start new med after I return and in the meantime, up my xeloda dose from 7 days on/7 off back to 14 days on/7 off. Although not likely, we are going to check if going back to the higher dose generates any response.l
I thought I would feel better/more at ease as time went on with this dx but it is the opposite. In the beginning, there was hope I would be one of those exceptional, ultra long-term survivors. With my first progression, that was shattered but I was able to put back the pieces and regain some hope of a long, long run. Now, I feel like I am just another number and that as I approach the median overall survival, I question how much time I will really have. I feel so sick thinking about it. I think how attached my 2-yr old is to me and wonder if I can make it long enough so he remembers me. Anyway, just having a dark day. I am usually very positive about this situation. Despite knowing intellectually the stats and realities, I am unable to accept that I will die from this. Not an acceptable outcome.
Shetland, much of you post rings true to me as well.
Stefanie, I agree with the others, such a beautiful pic.
Louis, your wife continues to be in my prayers.
Thinking of the rest of the dynamic women and men on this thread as well.
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Louis, believe me we are so relieved for you! Don't worry about us, in due time you will be giving your 2 cents. Rest up also, and love your schedule with the kids. No, this monster does not stop for a/t. The kids are a healthy diversion!
JFL it's truly beyond words. Every birthday, every outing with the kids.So sorry to hear what's going on. Xeloda did not do much for Dani at all. It's a good treatment, but....Maybe upping it will give you a push? Who knows. There are still many options for you, so don't feel defeated. And they are coming out with new stuff, that keeps everyone going.I could just imagine the cuteness from the little one.
Meanwhile, the Pet/CT that I was hoping for Dani, was negated by Insurance. They say they will only ok a CT. She never had just a CT? How would they compare it to the last scan, which was a PET/CT?? are they willing to take such a chance? They could see the History. They are so ignorant. I am upset also at onco's office, i don't think their hearts are aching, they are dragging their feet with that. Tomorrow we'll have to be more stern about it. Dani did not want to rattle the office, she is going in tomorrow for the last infusion of this cycle, but she will tell them, that her life is too precious for them to just sit back and let some bureaucrats decide on what's best for her. Not happy.
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JFL, I'm so sorry you are having such hard time. I'm know we all relate to that and have had the same feelings of hope that we will be exceptional responders, then extremely let down when we are not. Having a bad scan is the ultimate reason to shatter your hope. As Z said about each scan "It's like being diagnosed all over again" (and again and again.) It is a relentless trauma to the psyche and wears us down.
Some days I have felt like Stephajoy in that I feel somewhat used to it all after 21 months. (Probably because I haven't had to deal with any life threatening events yet, besides the cancer of course) Other days one random thing can turn me into a puddle of despair and grief. I live in denial most of the time as it just keeps me somewhat sane and I simply have not, cannot accept either that I could die soon. But the scanxiety brings it all up to the top, it is building here a week before and I am pretty sure progression has occurred. Then I wonder if my wonderful non-eventful "ride" of almost two years will take an ugly turn.....
As far as your precious baby, that is really the worst kind of worry. What will happen to our loved ones? Will they think of me often? Will they keep my memory alive? I have been blessed enough to see my children grow into adulthood, for which I am so grateful, but I still freak out thinking I won't be at their wedding or see their babies born. That I will miss sitting around our house laughing at the dinner table with them and all of the other family things I will not be a part of. That part will never get better for me. And though I know my kids will be OK, I worry more about my DH going it alone.
Shetland does have a very good point in that, it is what it is, and worrying to the point of being sick just ruins whatever joy you can grab onto. I know It is so much easier said than done and easier too when we are feeling fairly well and in between those damn scansI Yet the only control we have left is to keep moving forward, making memories, keeping our hope alive. Like Shetland said, we very well could see new treatments arrive that keep on extending our lives to a more normal span. I have to believe that. Whatever you decide on for next Tx it could be the one that suddenly makes you an exceptional responder and I pray it is! I also pray that I use the time I do have well. Take that trip and have a wonderful time!
Good for you ramen! Sounds like a great trip. Good luck on Friday! I am pretty worried about how insurance will go too.
That is a very pretty pic of you Stephanie! Anytime I go through the trouble of "glamming up" I make someone take my picture! Since I am the family photographer I get so few of myself.
Great news Louis! Keep pumping her full of love and sunshine and she will heal in no time!
Hope your lunch was as fun as it sounds babs!
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Very well said, artist
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Wish I had longer to respond to all of your heartfelt words. It is a gift to have others who know just how it is.
JFL, I am so sorry to about your progression and all of the fears that come with it. I do hope you enjoy your trip in every way you can and that Xeloda surprises you with renewed effectiveness.
Louis, I am so glad to hear this news! And, never worry about taking time for focusing on your own family's pressing concerns. That's what we're here for.
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JFL, I am sorry that you are experiencing progression. I understand why such news takes us to that dark place. We all hope to be exceptional responders. Perhaps many of us will be once we are matched up with the right treatment plans. I tend to live in my own little land of pretense where I don't have MBC and I will live for many, many years. News of progression forces me back to reality, and I tend to swing towards the other extreme of thinking that I'll be gone in weeks. Luckily, I have been able to pull myself up and continue. The lives we live are not easy. Regardless of the care I get and the support system I have, in some respects I feel like I am in this alone. I sometimes feel that this body that I have always treated well - no smoking, good nutrition, exercise, and all - has betrayed me. Then I think about the fact that it holds on as it battles this disease for me, and I feel good. I try to focus on what I have and enjoy my life. I have no idea what will come next, but I suppose that would be true even without MBC. I hope that the increased Xeloda slams those cancer cells. I hope you enjoy every minute of your vacation. I would love to see pictures from you.
Hugs and prayers, Lynne
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Hi - Some of you may recognize me from the Bone Mets thread and the Ibrance thread. Well after 16 months on Ibrance/letrozole I am no longer a bone-only metster. The cancer has progressed to my liver. It is a very small single lesion (13mm) that was first seen in January when it was just 5-7mm and considered indeterminate. My blood work was pristine according to my MO and she was not convinced that it was progression. It was too small to biopsy anyway so we really only had the option to watch it. Well it nearly doubled in size between January and April and that was enough for my MO to confer with a colleague who works in Clinical Trials at the Termeer Center for Targeted Therapies at Mass General Hospital. He also works with Dana Farber and Sloan Kettering on the clinical trials. I have elected to join the clinical trial for a new SERD (selective estrogen receptor degrader) called LSZ102 in conjunction with Ribociblib (CDK 4/6 Inhibitor) which is very similar to Ibrance. I will write more about the trial at a later time. I just wanted to introduce myself to this thread. I've been putting it off and not wanting to deal with it for the past couple of weeks. I don't have a lot of answers yet. I'm still digesting the situation. I will open a new topic for the Clinical Trial once I actually start the protocol on May 18. I have thus far had a bunch of pre-screening blood tests, EKGs, Echocardiogram and a liquid biopsy. Thursday I go in for the liver biopsy which is mandatory for the trial. I would be having it done anyway since I like to have definitive answers.
My first question to this thread is - have you all had liver biopsies and if so what kind? I believe I will be having a percutaneous biopsy. I will be sedated and then will have to lay quietly for 2 to 4 hours afterward. I will try to get some answers today about what is planned but I thought I'd reach out to you guys to hear about your experiences.
I've been reading through this thread and see many familiar faces from other threads. I'm not very good at addressing everyone individually and I'm always fearful of leaving someone out or worse mixing up people and their situations. These threads are so fast moving. But I do read daily and have you all in my thoughts.
Thanks for reading.
Cathy
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Louis, it is so good to hear that KD is home. Please, please, take time for yourself during all of the business that comes with this disease and family. I am praying for you, KD, and your whole family.
JFL, I am sorry to hear about your progression but I have confidence in your next treatment.
Momallthetime, as many have indicated on this board, at a metabolic level, cancer loves sugar. A PET/CT is often used to identify cellular changes. When you have a PET/CT you are given a radio tracer in a glucose solution. The glucose is taken up by the cancer cells and with the help of the radio tracer we are able to see those areas that eat up all that glucose and "light up." This is why you are asked to limit your sugar/carbohydrate consumption several days before the scan. A CT is often done with radio tracing contrast and without to monitor and detect any changes in the specific organ that the PET/CT had identified earlier. https://my.clevelandclinic.org/health/articles/pet-scan.
I saw my MO yesterday and I will be moving on to palbociclib and fulvestrant. After 9 months on liposomal doxorubicin we had exceeded (by a lot) the life time max dosing. While it got me to NED as shown on the Feb scans we decided it was time to move to a new treatment. We did a 3 month flush and break from all treatment. My scans last week showed a new met on my liver and that one of the previous mets had increased in size. Start the new treatment on Friday with the fulvestrant first and will start the palbociclib at the end of June when my hubby and I get back from our fly fishing trip.
Here is wishing you all a day of dancing, loving, and laughing.
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Cathy,, similarly I was on Ibrance for almost two years. Recently I also moved from bone only to liver. I did have a biopsy, like the one you described. It wasnt that bad. A few stings (Like a bee sting). You know they are coming when they tell you to hold your breath. The loopy meds help a lot. I've just started Xeloda. Im very interested in your trial. Please keep us posted.
Stefanie
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