How are people with liver mets doing?
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jamie....we are all "healthy sick".
Gotta be healthy sick to take all these blasted treatments.
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JamieM one thing is for sure, it's good to have the plan. You go girl.
Lita absolutely. Oh my gosh, i don't even like to tell my kids much about it, because i feel so bad with the service they have to put up with. These new docs are paid employees, they cannot have their own ideas if they do they cannot act on it, because Big Brother is watching. They are treated poorly, so in turn how nice can they be to the patient? That's one more reason why I doubt all I hear from them. Is it the $ or do they really believe in the advice being given?
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Jamie, you can definitely do a half marathon! I had the easiest time (compared to my other regimens) running since diagnosis when I was on a 3-drug combo of Ibrance/Faslodex/Aromasin. I have continued running despite treatment changes but noticed things were slightly harder on Xeloda, and now on Afinitor/Aromasin. Good luck!
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Linda, the only help for scanxiety I have found is distraction to escape it for a while. I'm sorry your scan wasn't more definitive, but since it did show some improvement, let's stick with tumor flare as the right explanation for the pain. It looks like this is your first chemo, so it makes sense to me that there could be something dramatic happening in there. Babs, congrats on getting into the study! I'll follow your study thread. Blume, Ibrance + letrozole should be easier than taxol, and as it is a different kind of treatment, it could be just what is needed right now. Kaayborg, two years and going strong is great! Yes, may it last forever. I think that your track record bodes well, especially considering your age and histology. I'll join Lynne and the others in the happy dances for you. Momall, I know what you mean about switching between scan types, and it's frustrating because we can't scan every month. Still, I think it is good to get a PET/CT at least some of the time. Very good that you have F1 results to help choose possible trials in the future. We leave no stone unturned. Artist, I hope things are settling down into more of a routine now for you, and that you are feeling good results from Abraxane. Photogirl, yay for both of us with dropping TMs on Xeloda! Jamiemarie, I totally get the idea the if you just keep running, you can't be too sick. For me it is just keep dancing, just keep dancing. Progression is hard. Like being diagnosed all over again in some ways. Just keep going. JFL, it's great to hear how you have been able to carry on running through all this.
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Shetland, so far I've had one infusion on Monday. Add that on top of the fatigue I already had from my debacle I am positively exhausted. Tomorrow another para procedure then Friday I get the port. I can hardly walk right now. Just praying the Abraxane kicks in soon. I need to feel more normal so badly.
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Artist, SP and other lovely ladies - I am back from my new UCLA in Laguna Hills onc. She is great and explained a lot. I will be starting Abraxane on 8/15, and am getting an x ray of my right arm tomorrow, plus may see a specialist to make sure my jaw met is not infected. ouch She said kidney and liver functions are good - but had bone progression and liver uptake from 2 months on A-phoneytor. I have good veins, so no port. This afternoon I ordered cold caps to keep my hair which just grew back in from Ibrance. Artist I don't like hearing all the fatigue and para, you need a break. SP how are you? Lita - you are an inspiration and Momall - wow. Just the best advocate ever. Here is a pic from my Paris sojourn in Giverny at Monet's gardens, followed by a little desert. Also went to Omaha beaches and saluted our boys who were so brave. Finally had a visit to Louis Vuitton, departing with new wallet and shoes. Mais oui!
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Lalady. Beautiful pictures. Si happy you got some retail therapy in!!' That always makes me feel better!!!
Babs
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Greetings to all you wonderful people! I am delighted to say I am still in the land of the living with all my mental faculties in place. Four weeks have flown by. We drove 4,335 miles between Northern Indiana and Eastern Oregon. We had a fantastic visit with my brother, which was the whole point of the trip. We also enjoyed the Tetons and Yellowstone. Two things on my wish list got covered.
Following are pictures of our trip and some wonderful things that happened right after we got home.
Supper with my brother's son and daughter. It was serendipitous that they were visiting at the same time.
My 80-year-old uncle and his wife drove 8 hours across Oregon just to see us. It was wonderful.
After spending two days visiting in prison, we headed off to the Tetons. We spent one night in a cabin. It was so nice to settle down and rest for a bit. We did our own food and just relaxed. My husband loves photography and is very good. He took three hours from dawn and just drove and took pictures to his heart's content. This is outside the cabin, about 2 miles south of Yellowstone.
Just a sample of his work.
Old Faithful obliged us during lunch.
My one walk was out to the Fountain Paint Pot and its friends. 8,000 feet and I didn't get on really well. I like breathing! The sun was really bright, hence the less than cheerful aspects.
i came home to another amazing experience. I've been working on my Master Guide for my Pathfinder Club. It's the highest level that can be reached and it takes a lot of reading and other time to get done. I haven't finished the material, but they Invested me anyway. It's such an honor.
After I got home that day, the best of all came to me. My sister, with some assistance from our mother, rapidly finished a quilt she had started for me. I saw all the bits and pieces before I left for Oregon. We were gone 10 days. The whole thing was completed by the time we got back!
This is with my mother, showing off the back a little. It is all quilted with notes and treble clefs. Because of the way it got done, it is completely reversible.
Myself, my sister, and our mother.
The title of the quilt is "The Music in Me". There couldn't be a more appropriate title for me.
Detail of quilt.
Just wanted you all to know how I'm doing and to encourage you. We take one day at a time, but we look ahead and set small goals of things we want to do. That's how we keep going in good health and cheerfulness. Blessings on each of you.
Raewyn0 -
I really enjoy seeing all the pictures.
Artist, I can't stand knowing you're not feeling well. Praying for that Abraxane to take action fast. Best wishes with the port. My aunt happens to be getting one tomorrow as well. Thinking of you and sending hugs.
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rgc77: Thank you for taking time to share your adventures and accomplishments. If you can do it, so can I. You are a beautiful person.
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Rgc77, YOU are an inspiration! Just keep living and enjoying every minute.
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Artist, I am also sorry that you are feel so poorly. I hope that Abraxane hits its mark quickly and that you see an improvement soon. I will be thinking about you tomorrow when you get your port. How often do you have chemo? I am praying that your SEs will be minimal and you grow stronger each day. You are in my heart.
Lalady, Thank you for posting the photos of your trip. They are beautiful. That dessert looks yummy
Raewyn, it sounds like you had a fantastic trip. It must have been so nice to see your brother and his family. The quilt is spectacular. Your sister and mother did a tremendous job of completing such a big project in a short period of time.
Hugs, Lynne
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Artist - I so hope you start feeling better soon. My thoughts are with you.
Lalady - Bravo pour les beaux achats!
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Hi Ladies, I haven't posted much but have been following online. So happy to hear that many of you are doing well and saddened to hear others are having a rough time.
I'm now 2years and 3 months into this and it's such a roller coaster but we must always have faith, visualize ourselves healthy, and spend time with those we love.
I've been on a parp inhibitor for the last 15 months which really gave me an amazing QOL but a tiny bit of progression seen in my liver (bones, lungs stable!) is causing me so much grief. I have extensive liver mets so a tiny bit of progression not a big deal I guess. We decided to stay on drug as progression was in one tiny spot. Roller coaster liver enzymes, alp steady at 600 for a few weeks and now all of a sudden I am so bloated I could bareley take my 2 year old to the park.!
Do any of you get that on and off? I don't think it's ascites but I'm so uncomfortable and have an on and off again low grade fever. Gonna see my onco tomorro
So, I'm supposed to decide- stay on this drug til I've 'clinically' progressed or change to ibrance/Femara. I'm nervous to make this decision as how do I even know if ibrance will work and other than last few days I've been so well. Arghhh
Ok ladies, wishing you a healing peaceful evening, lots of good sleep, and looking forward to reading good news here!
Maria
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Artist, as you can see I am impatient for you to feel better. You have so much going on right now, no wonder you are exhausted. Hang on. Thinking of you. Lalady, I'm so glad you like your LH onc. It sounds like everything is proceeding well in preparation for chemo day. Will the nurses be assisting with the cold caps? What is that amazing-looking dessert? I love the blue accent. Raewyn, thank you for sharing the photos of such special times. The love your family and friends have for you shines through. You and lalady remind me that I should make more plans to do happy things with people. I get stuck in just trying to keep up with the usual. Bens Mama, regarding your decision whether to change treatment, I think I would talk to the onc about how this particular cancer tends to behave; i.e. is it slowish or is it prone to fast progressions? Are your TMs helpful to monitor between scans or not? Is a biopsy and genomic testing appropriate at this point? Ok, instead of an answer, that's three more questions. Sorry!
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Raewyn what a fabulous trip to have taken with your family. It's important that we make great memories with those we love. And that quilt is amazing- made with lots of love!
Artist I'm hoping you feel better sooner rather than later! Sending you healing hugs and hope having the Port in tomorrow isvery easy for you
BensMama. I would see what your MO says about changing treatment. I'm sure your mo can also ascertain if it's ascites or not. Keep us posted on what he/ she says
Babs
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thanks Babs and Shetland! Just got home and doc put me on a low dose steroid (dexamethosone) to see how i do. As I'm on a clinical trial I have 2 oncs. One close to home, whom I saw today, and one at larger centre. Will see clinical trial onc wed and hope the dex and Advil will help til then! Wish me luck- I need to be here for my little one
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Bens_Mom,
I hope that the dexamethosone and Advil help relieve the symptoms you have been experiencing. Did your local MO give an opinion about whether or not she thought you had ascites? Do you know if your bloating and discomfort could be SEs from your treatment? Sorry for the questions as I am sure you don't really want to hear them.
It is never easy to decide whether or not to change treatments when there are no obvious reasons to choose one path over another. If you were experiencing substantial progression, it would be an easy decision. I think that the best thing you can do is listen to the pros and cons that your MO presents, then follow your gut. There are never any right and wrong decisions for us. Each choice just pushes us through to the next chapter. We should never look back and say "what-if" or "maybe I should have" because, let's face it, it's impossible to know what might have happened under different circumstances. Trust your instincts.
I will be thinking of you on Wednesday when you see your trial MO. In the meantime, I am sending hugs and prayers.
Lynne
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BensMom - I echo the questions others have posted and hope that the meds bring you relief. Keep us posted.
So last week I was happy to report that abdo ultrasound showed fewer liver mets, this week more bad news. CT scan shows a peritoneal carcinomatosis. Biopsy is the next step and will probably stop Taxol but not sure yet. MO talked about Epirubicin, also called Ellence. Never heard of this chemo before. Any of you ever had it before?
Edited to correct carcinoma to carcinomatosis
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Linda, ugh! I am heart-sick about your news. How soon will you have the biopsy? How are you feeling? I have no doubt that this is taking an emotional toll on you. How are you feeling physically? Is your sister with you? I wish I could be there to give you a big hug and just listen to whatever you want to say. You are in my heart, mind, and prayers.
Big hugs from, Lynne
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Lynne, when it rains it pours! I'm kind of numb emotionally right now but I'm happy to have my sister with me. She's been quiet all day since we got the news this morning. I hate the effect this damn MBC has on our loved ones. Physically, it's a roller coaster lately. I go through a few days where I'm OK and then nausea and vomiting strikes again even with anti-nausea meds. I thought it was due partly to Taxol and partly to the rads I had on neck and head but MO now believes it's cancer related and not SEs. The peritoneal carcinomatosis explains the pain I've been having in abdomen and radiating to back. Also lost 9 lbs in a month. Waiting lists for biospies as an out-patient are so long that MO is arranging I be hospitalized for 2 to 3 days and have it done as an in-patient. Don't know yet when. I'm fed up of this "journey" for lack of a better word and sometimes feel like throwing in the towel. Thanks for your hug, I felt it.
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Linda, I hope they find something that helps you to feel better. I am glad to hear that your MO is trying to get the biopsy scheduled as quickly as possible. It's never much fun to be hospitalized, but they will be able to give or change medications more quickly there and can also order tests more easily based on your specific needs. My hope is that they can get everything, including your pain, under control before you are released and find the treatment that will knock down those mets. I can understand why you are fed up with all that is going on. I truly hope you will find relief soon.
Lynne
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Thanks everyone for the well wishes. I got the port today, very easy really. Wheel me in instant sleep roll me out! It's amazing what a few IV drips can do. The stronger anti-nausea and electrolytes they gave me made me feel MUCH better today. Actually ate a whole egg salad sandwich, which goes down easy with a iced latte. Heaven. So I'm hoping I've seen the last of the hospital for awhile and just getting the infusions, which I am praying will knock out the peritoneal symptoms.
Linda, I'm sorry to hear of this new development too as I know first hand how extremely uncomfortable it can make your life. I lost 25 lbs during of all of this so hoping to make up for lost time now! I hope they get you in sooner than later for this. Much better to nip it in the bud now. I felt like throwing in the towel yesterday. Today is a new day. Hang in there dear lady.
Get pics lalady! Monet's gardens is the stuff I love. And babs is right, I can't wait to get out and just browse beautiful things! Mother of the Bride dress perhaps? That dessert shot made my mouth water! I'm so full of admiration for your travel adventures! Sure hope the jaw is NOT infected.....So far the Abraxane has been pretty fine....best wishes!
Wow Raewyn, not only a great family adventure but your accomplishment is huge! Super congrats!
Thanks Lynne! I get every Monday with the 4th week off. So once I get used to the routine I hope get us on a trip soon. I have taken a leave of absence from work for now......woohoo!
Thanks kaayborg! I am already perking up here. Have you started back to school? How are your darling girls?
Bens Mama, I hope you find out soon if that is ascites. Once they take hold it is harder to get a handle on them......
Hope we all have a "feel good weekend"!
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Artist...so happy you are taking a leave from work. That will take a lot of pressure off, and now you can focus on YOU and the upcoming wedding.
We sometimes forget how stress and worry can exacerbate our health conditions, making them worse. Man, I wish it were the inverse...when we're happy and content, that our health would vastly improve and any illness would just disappear, but it doesn't work that way. And I don’t like it when people say just have a positive attitude and you'll be fine. No, we won't.
But nevertheless we keep struggling with this beast day after day, trying to keep it at bay.
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Linda, I am so sorry to hear about your news, dang it. I do agree that we both seem to be going in the wrong direction. I hope they get you in quickly. I'll keep praying for you. Sending you a big hug.
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Linda, I'm so sorry to hear about this progression. When I had progression a few months ago to my liver, my sister and mother came within ten minutes and they were laying on my bed with me feeling my pain and anguish. I don't know who feels worse, us or our families! I hope they find there is something out there that will kick these mets!! A big hug to you. You are so strong!!
Lalady, what a great trip you must have had! France is one place I haven't been yet. Loved your photos and I'm glad you got a chance to do some shopping!! That can always make you feel better!!!
Artist, I'm so glad you are taking some time off of work! You need to take some time for yourself and really if you don't feel well! Better to feel better than go to work and feel like your not yourself and have too much pressure and stress! I hope you feel better soon, I think of you all of the time.
Bens Mama, I hope they don't find anything too wrong. I would be at my MO ASAP if I were you. They can feel your stomach and get a pretty good idea what might be going on. My MO always checks my stomach and I then I hear him say, very soft, thats good! It always makes me laugh when he says it. But do get it checked before it gets out of hand. My husband says ascities can be difficult to deal with. His first wife passed away from a rare liver cancer at 43 and she had it and he had to drain it for her, but he said she was really uncomfortable most of the time.
Raewyn, Your pictures are beautiful. What a beautiful family you have. I'm so glad you are traveling too. It makes one feel like we can leave our worries at home and pretend everything is ok. Thats what I do. I was in Yellowstone for a week two years ago doing some photography. That is a wonderful. peaceful place. I hope you got to see a Grizzly Bear, Wolves, and lots of Buffalo!! I was watching a big Grizzly Bear from a mile away so my husband decided we should drive and climb a hill to get a closer look. I told him that bears can move quickly and that I just didn't feel comfortable walking in case we run into him. Sure enough, I start up the hill and out of now where this Grizzly bear comes right at me. I laid down on the ground hoping he would pass by, and my husband was as scared as I was. He moved off but way too close for comfort. I always seem to be in the wrong place at the wrong time!! The rangers finally came and the Grizzly moved off but drew a big crowd. I just didn't want to get attacked, that is what I was afraid of. All ended ok. Not the first time I have had close encounters!!
Hoping everyone has a good weekend, I had bloodwork, my week off Xeloda, Xgeve shot, OB check up and I felt a weird finality when my OB told me that I probably would not need Mamos or bone density any longer. It made me feel awful since I could not understand why no more Mamos. My husband told me I'm being treated for Stage 4 cancer so maybe if another cancer developed in the breast, it would be treated like I'm being treated. I still am going to ask my MO. Find that really final and strange. Then I got the depression kicking in due to the reality of this dreaded disease. Oh well, at least today is another day, my week behind me.
If I have forgotten anyone, I'm sorry, been so busy and then sometimes I don't remember everyone, but I'm thinking of all of you and hoping for all to find comfort in there situations.
Hugs,
Anita
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Lita. I don't like it either, when people really think that "good attitude" will change the outcome of metastatic disease. I wish they knew how hurtful saying things like that to us is. My best friend said it yesterday. I was crushed. Still am. She was talking about her niece who has ocular melanoma with mets to liver. "Lisa has such a good attitude that she is going to get her cataracts fixed and a plastic surgeon is going to work on her eye so it will look more normal!" I said her attitude will not cure her. Well it's been proven that it does make a difference in outcome, she said. No it has not, I said. It only makes a difference in how hard it is for friends and family. They believe that because THAT'S what they want to hear. It makes them feel better, not us. To me, it makes my job harder because I am constantly hiding what it's really like to be me. I can't even be real with my best friend because she will think I'm having a bad attitude.
She also doesn't seem to believe me when I tell her how asymptomatic mets can be. Well, you seem to be doing ok so I'm sure your scans will show improvement. It's so easy for her to say stuff like that because she doesn't read this board or even want to learn what the truth is.
Yes, I'm in scanxiety. Results of PET and MRI on Tuesday. I'm touchy, overemotional, selfish and misunderstood. The poor pitiful me phase of waiting and wondering what these deadly buggers are up to.
Actually, I think there is a good chance that lung and chest mets will show some response to the 7 months of IF. Liver mets are another story (going in circles in my brain). I'm sure I'll make it, with plenty of valium, till Tuesday. I just won't try to share my real feelings with my best friends. Only here, with you who understand.
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Boy, I agree with both of you 100%. If we could only wish this away with optimism would we not ALL be with the "program"? People don't get it unless they've been there. I am also getting tired of people trying to stuff food down me when I just don't feel like it.....
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Greetings to all. I've been reading your posts while waiting for my bone scan and liver biopsy results. Finally have both this morning though not a lot of detail as my oncologist is on vacation out of the country do our communication has been by email. I have an appointment August 17 th when she is back.
The liver biopsy confirmed that the mets are breast cancer. My MO's email said she wants to start me on Faslode and Ibrance. I feel like I am starting a whole new learning curve on treatments and know almost nothing about either. It looks like several of you are on those therapies. I'm not sure if I should move forward or seek a 2nd opinion first. Part of me feels a sense or urgency to begin treatment. On the plus side my bone scan came back clear.
Thanks to all for sharing your experiences and support. It's been really stressful waiting for results and I think that will continue as I go through the next few months making decisions and starting treatment. I'm going to take leave from work, need to minimize stress.0 -
Grannax, what REALLY hurt me was when one of my best friends said (shortly, maybe days, after I was dx'd & very vulnerable), "Well, you're being so pessimistic, it sounds like you WANT to die."
I wasn't being pessimistic...I was being REALISTIC. For bleep's sake, I HAVE STAGE IV METASTATIC CANCER, AND I WILL PROBABLY DIE FROM THIS! There is NO cure for this! So you're scolding me for being what I think is realistic, contemplating that I will only have maybe a couple of good years left b4 things really start going to shit with liver ascites, and possible hip and joint replacements because of all my diverse mets?Thanks a lot, friendo.
What do you say after that? EVERYTHING you say from that point on will be colored by your previous experience.
Well, now that ANOTHER one of her friends has Stage IV PANCREATIC cancer, she now 'gets it' just a little bit better.
But fortunately I have more than one friend. My other friend totally gets it. She doesn't chide me for being 'realistic' about my situation. She knows I won't 'beat' this. She says I have to spend time making good memories with people and tells me to FEEL my feelings...don't bury them and pretend everything is okay, because it's NOT ok.
Oh, and Anita, the drs won't do anymore mammos b'cuz, as your husband said, you're Stage IV. The horse is already out of the barn, metaphorically speaking. One of the first things I asked my MO is, "Will I have to have a mastectomy?" She said, "That's not going to do any good at this point, and during the time it would take you to heal from the surgery, your cancer would continue to spread, affecting even more organs and bones. We have to start Tx right away."
She did say there may be a time when we might have to do bone surgery/procedures as my bone mets continue to eat lytic lesions in my spine, hips, ribs, pelvis, etc. Everything else will be to try and keep it under control.
Phew, hate this disease so much!
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