How are people with liver mets doing?
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50sgirl, thank you for the wise words about should-haves and what-ifs. It is something I need to hear now and then. Linda, %*&^$* about the peritoneal mets. I'm sorry you have to deal with this. Hoping that since your onc is on top of it, the new chemo will beat it back nicely. Artist, I am very happy to hear you are able to eat better now. I remember the day I attended my first support group meeting, tense and shaking with fear, and how the relief of talking with the people there made me finally able to eat something, and it was an egg salad sandwich, the best I ever tasted. I'iwi, I'm glad you are taking steps to minimize stress. For what it's worth, your onc's plan makes sense to me because Faslodex is different from an aromatase inhibitor like Arimidex, and adding Ibrance ups the chances of it working well. By all means get a second opinion if you are so inclined, even after beginning treatment. It may help give you confidence in the plan and you will have done due diligence.
Anita, what you said about your mother and sister lying on the bed with you sharing the anguish you felt at progression, it made me wonder. How did you get to the point where you all could do that? That would be such a relief to me, and I am fortunate to have very good and loving people, but I can't get past the impulse to protect them from the full impact of the emotional pain, even though I can share what is going on physically. I can tell them I am worried or lonely, but mostly I try to frame things in the best light out of an impulse to protect them. Another family member who understood what my diagnosis meant has now chosen mostly denial because it is too painful and I look good.
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Liwi - Ibrance and hormone suppression is a reasonable place to start. You do need second opinions and you have a lot to learn in order to fight for your care going forward, but it takes months and the first couple of line of treatment for hormone receptor positive are pretty well defined. You can change your mind with time, and there are reasons you might do so, but starting treatment is important mentally, particularly in those tough first few months.
>Z<
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Shetland, My mom and brothers were the first people I told the day of the diagnosis then my dad and sister came right away. We are a very close family and I knew that if they new everything step by step they could help me get focused. My mom is 18 years older than me and my sister is 19 years younger. Big family but super close. They want to know everything so I tell them. Sometimes it's hard for all of us. Lots of crying but we laugh and work together everyday so it was easy. In a big family there aren't many secrets. Lol. I'm the oldest of 6 so this is a really big blow but we are all sticking together and no secrets just deal with it as it comes. They worry so instead of keeping them out of the loop, they are my support system. Same thing with my best friend. When I told her the first thing she said was that "well I will take care of you". It's great to have the freedom to tell them and it takes the burden off of me in a way.
Hugs. Anita
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Lita, thanks for the information on Mamos. They have been a huge part of my life and it shocked me when they said I wouldn't need them anymore but what you said makes sense. Thank you!
Hugs,
Anita
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Yeah, that's the one thing that can be said to be positive about stage IV and mets. No more mammograms!
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Linda- I'm so sorry to hear of your progression I hope you get a new treatment plan in place soon that knocks the sh-t out of the mets.
Lita- I agree with you. I was out with good friends last night, one of whom is a Dr who said that my good attitude is why I'm "doing well" on treatment. Really? As a dr he should know that what ever is growing in your body has NOTHING to do with one's attitude. This beast within us has a mind of its own!
Babs
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LindaE - Merci for the kind words. I have family in Valleyfield, so speaking French in France helped me shop and save $, plus euro was down. Very sorry about your progression, but as you know we are here pour vous! Z- hope your biking went well, you are my hero. Liwi - I lasted 18 rounds on faslodex (a SERD regulator) and Ibrance (CDK pathway inhibitor). I think you will do well assuming you monitor your blood counts, etc. Fatigue is the baddie with those two -and you must pair Ibrance with an AI like Arimidex or Letrozale for it to work properly. Z is better at explaining the chemistry, but as a math major/MBA I get it. Please PM me for any questions - I am at UCLA. Lita - thanks for playing it like it is. I want no one's pity, but this is a journey with an end, and although some of us get many years, others do not. My new onc is planning 5-6 mos of Abraxane. oy Anyone on IV chemo that long? Artist how are you doing girl? I have been losing weight and eating ice cream any time I feel like it here in melting CA. All my skinny jeans fit, but I miss my energy. That "Julie" lady in the ibrance commercials has not seen me crawl out of bed then hold on to a handrail down my stairs to brew coffee. She must be a clone or a Stepford wife. lol Happy weekend ladies.
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Thanks Shetland, Z and Lalady for your feedback on my oncologists treatment plan. It makes sense to me based on what I've read but this all so new. You're right that I will feel better starting treatment. In the meantime I'm focusing on enjoying this time when I am feeling well, went to Mendocino coast last weekend, an outdoor theater a musical last night, going for walks when I get up each morning and appreciating the sound of the birds.0
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liwi - our motto here is eat dessert first. I feel that having cancer has made prioritize better and get stuff done I wanted to. There are some good things...
Landing in NM after a week in Whistler...
Z
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lalady, LOL! That reference to "Julie" cracked me up! I too watch that and am like O_B _ROTHER......I eat anything that sounds good right now. I lost 25 pounds in the last two months!!! Weak as a kitten. Taste buds are way off but occasionally I hit on something that fills the bill. Tart apples, eggs, berry popsicles. Also find the chocolate Ensure's on ice are pretty good.
My energy is literally nonexistent right now. I hope that changes soon as I am such a "do-er" and get very frustrated. Another infusion tomorrow in my new port. Sort of nervous as I just had the surgery Friday....So relieved to have surrendered my job for now and probably long term. Now I just need to start getting out of the house...
With my family I just have the need to vent and don't want to spring any surprises so even with my grown kids we talk about all the stuff I am going through. It is harder for my son who just wants to "believe" I can get better. But he is such a softy at heart I know it's very hard on him. Both of my daughters have started the process for nursing school so even went to a paracentesis with me (yuck) and have been so incredibly supportive. I feel blessed in the midst of this curse.
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Hi Everyone, thanks again for your messages last week.
Linda- I'm so sorry you had bad news last week. The first few days, until a new plan is in place, are just the worse. Just not knowing, feeling like the cancer is doing what it wants till the next drug kicks in, but that's not the case. My Once told me there are studies that show if the drug is going to work it's going to work- now, next week or next month. I'm sending you lots of hugs.
50s girl- you are so right about following your gut. I was doing SO well because I followed my gut by going on a clinical trial which my local onc thought was not a good idea. I knew I needed something more than the old chemo regimens and my gut, thank God, was right. I always try to follow it now but seriously.....how are we supposed to make decisions on our own? This is our life we are talking about. Since June it's been like....well, it would be reasonable to switch drugs but reasonable to stay on your drug....ok....so what? Anyway, at the end, I sit down and pray and as I've been doing since September 25th, 2005 ask the universe to guide me.....show me a sign....give me that gut feeling which I need to make the choice.
Anyway, important thing is we are all here....although that is not always easy. Last Thursday night I put my son to sleep and just sobbed for hours thinking how the hell did this happen? How does a healthy woman give birth to a healthy baby and and the same time have this monstrous cancer lingering in the dark. Makes me believe in miracles.- which do happen. The mets must have been there for a long time and the fact I even got pregnant after the chemo and hormonal meds, not to mention 5 years of menopause, I experienced years earlier really is a miracle.
I do have a question- I know a lot of you are on or have been on Ibrance- has anyone started it right after progression from another drug, when the liver was thought to have progressed quite a bit. I've heard it takes a while to kick in so I'm wondering about that- I'll know more tomorrow. Wish me luck.
Have a lovely day everyone. I pray for you all every night.
Hugs,
Maria
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Lalady, I was on IV chemo for five months (which was just as my onc planned as she had told me four to six months). It was Taxol, same drug as Abraxane but a different carrier.
I got curious about Julie so I found the commercial and I'm watching it. It's hilarious. Julie's feet touch the floor as she gets out of bed, and she does not hobble or limp. Then she gracefully squats down to pick up the morning paper, with no AI-plagued stiff joints apparently. Oh, then she takes the stairs! Go, Julie. Teaches her class -- I wonder how many words she forgot during the lecture. Her family does not seem stressed and her house looks great. I wonder who keeps it that way. But I suppose Julie has no fatigue. And where is that mbc support group? I want to go, too. (Ok, this moment of cynicism has been fun.)
I'iwi, you've got it! The theater, the coast, the birds... Awesome.
Artist, it's amazing how refreshing simply sitting outside can be. Make sure you have a spot.
Bens Mama, I do believe our intuition can be important for treatment decisions, and so does my onc. Of course we integrate it with research and science. I have been thinking about how hard we worked choosing the treatment just before my current one. It was Faslodex and Afinitor, and I was only on it four months because it was not working. Were we wrong? No, I don't think so. Because we picked the very best treatment for me to try before moving to chemo, I feel confident that the move to this current chemo (Xeloda) really was necessary . We chose the hormonal therapy that was most likely to work for me, so I have no what-ifs to plague me now.
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I got great news about my PET results today. Evidently the y90's worked beyond expectations on my liver mets. There was no uptake seen in them! I still am so shocked because docs told me we wouldn't get definitive results until November.
The lung and chest mets are responding to IF. More later.😊
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LindaE so sorry you are going through this misery. DD also has peritoneal lesions, it's to be watched like the liver mets. I'd tell you don't let it get out of hand. And yes, your symptoms are a staple of this monster. At least your doc is hurrying it up with the biopsy. What is he trying to see, if something change in the mutation?
Raeywin it was so special of you to share these wonderful moments with us. WOW we have such a competition here with gorgeous pictures. And what is there to say for this wonderful effort of your family to get you this exquisite quilt, so glad you are enjoying these. Keep up the good work.
Artist let's hope this Abraxane kicks butt.
Maria it's a tough decision I think what Shetland said makes sense, if they could tell that the progression is fast. Go by your gut, that's how docs make decisions I think. And sometimes they ask me What do you think? Hmmm I'm like you serious? But truth be said, Dani has excellent intuition if she does not feel right about something, i'll go with her.
Anita, yeah Dani was also told no need for Mamos, but in this last PET/CT it showed a new lesion in her breast, was not there b4, but they haven't talked about it, I think e/o is scared to open up a can of worm. A lot is riding on the results of the next scan.
Grannax that's really wonderful news!! Look at you! I'm so mad that they did not give Dani this chance, only systemic treatment and Onco is so afraid to do a/t mildly invasive, if this trial does not work, i'd try to be more aggressive in asking for something like the Y90. So true about the sharing part. People truly cannot understand how you are doing what you can but only treading a think rope. It's not about them. Rule #1 and the ONLY rule. We don't bother. Dani does not discuss w anyone. Shut case.
Dani has no major SE's in the trial, but the BT's numbers are not making me very excited. We just keep hoping.
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I go for an education appointment tomorrow and start Ibrance/faslodex treatment with a shot on Thursday. Saw the Julie commercial, she looks better than I feel even before starting treatment! Enjoyed everyone's comments.0
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Go Grannax! when that Y90!1 stuff works it works, for sure. Apparently it was just the ticket for you ...
Maria - Ibrance is not what I would reach for with extensive liver mets, personally. It takes a long time to kick in. My hunch is that the Ibrance part of the equation did not kick in for months for me... it was the letrozol that initially controlled the cancer. There are also some arguments for doing hormonals after a couple of chemos, as some people find that chemo re-sensitizes the cancer to hormonals.
>Z<
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Bens Mama, regarding the parp inhibitor, are you brca positive?
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Husband11, yes I am. Brca2
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I read there is some developing evidence that parp inhibitors may be effective in some non-brca cancers. I was hoping you were proof of the new developments. Sorry if I've asked you this before, I might have and forgot. I get very interested when I hear of any different sort of therapy. Options are good.
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a photo from my recent trip to the Galapagos with the family. Feeling fortunate I was able to take it.
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Husband 11,
There is a clinical trial at Stanford called Beyond BRCA. They are targeting triple negative with homologous recombination deficiency based on the Myriad HRD Assay and non BRCA patients with a gremlin or somatic mutation in the following genes. PTEN, PALB2, CHEK2, ATM, NBN, BARD1, BRIP1, RAD50, RAD51C, RAD51D, MRE11, and ATR.
Robin
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Hi, I believe there is a non brca trial through astra Zeneca!
So, I am hoping that I will be like Julie...after a very long day it was decided that I will start on ibrance and letrozole. I am grateful for this option but really sad the parp stopped- but that was miracle drug 1 and now on to miracle drug 2.
Doctors don't believe chemo best option right now as I didn't last very long on either taxol or xeloda and after first diagnosis was healthy for years on letrozole. I'm 42 so will start injections again to ensure I'm in menopause (I am but wanna be really sure) until I can get an oopherectomy.
I'm scared of the side effects but am going to do what I can to keep them at bay and our family will soon move closer to my parents and brothers for extra support.
Ultrasound showed a tiny bit of ascites in pelvis but nothing worth draining. My bloating is cuz my liver has become quite enlarged- but I'm determined to get that down again!
Thank you all for your support and any ibrance advice would be greatly appreciated.
Hugs,
Maria
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Grannax, congratulations on the fantastic Y90 results! No uptake in liver! (What is IF?) I'iwi, I recommend looking at the Faslodex thread for tips on helping the shots go well. Wow, leftfoot, that is an amazing photo.
I have not been feeling much of anything in my liver lately, after three Xeloda cycles. I think it is a good sign.
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Shetland, Our new house has a fabulous little patio where I set up a water fountain, comfy bouncing chairs, umbrella. It's perfect. Although lately we have had thunder storms everyday and I've been pretty down for the count with everything. Hope my body adjusts soon to the new meds and I get some energy back to go out and just read or smell the air!
Fantastic news Grannax! You are a trailblazer for us all!
Mom, So far the Abraxane has kicked my but all right. Monday is infusion, Tues and Wed I was pretty much paralyzed with fatigue and muscle weakness. Felling a bit better tonight and trying to bulk up on protein when I can. To better days!
Leftfoot, That blue billed bird is just the coolest!
Robin, How you feeling these days?
Bens mama you are indeed a walking miracle and who wouldn't sob when looking at our precious children?
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Oooh, Artist your patio sounds lovely. A water fountain! Are there flowers for butterflies and hummingbirds? How about a chaise lounge so you can be there lying down if you like? I remember when I was a child, if I had been sick with the flu or something, when I was well enough my mom would take me outside in my nightgown to get some sunshine. It felt so good to go outside.
Maria, Ibrance and letrozole could indeed be your next miracle drugs. The Ibrance thread is very active and welcoming. Make sure you eat a meal that is not challenging to your tummy when you take your pill. Take good care of your mouth. And be like Julie!
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Shetland IF is my shorthand for Ibrance/Femara. I'm still feeling so amazed by the y90 results. I'm kinda like not wanting to read the report again because maybe I just dreamed all of this. I think I'll send a copy to my IR w a thank you note. From what he had told me he didn't expect this type of good news so quickly. As soon as I get brave enough to read report again I'll give more details. I'm sure I will have a few questions that someone here can answer.
Meanwhile, I've had some grandchildren time. They are such good medicine for me. I went over to watch Blake at gymnastics but ended up spending the night. As that was not plan A, I had nothing with me. No medicine, no toothbrush,no change of clothes, so the kids laughed at me it my borrowed jammies. We had a slumber party that night. So fun. Carefree. My neighbor was trying to watch for the Fed Ex truck with my delivery of Ibrance but missed it so today I have to drive 30 min to go get it. Oh well, I had a fun two days, it was worth it.
Yes, I look back on my adventures with each of the y90 procedures and it was certainly not fun. But now I can easily say "go for it girls, if you're given the opportunity".
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Hi Granna, can you please let me know a bit about the cy90? Where'd you do it and how extensive were your mets? Thanks!
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Ben's Mama. I did it here in Dallas Dr. Travis Van Meter was my interventional radiologist. It's called radioemboliztion. He has a web site where he explains how he uses the y90 spheres/seeds. It's very much like angiogram in that he goes through the femoral artery to inject the seeds directly to the liver mets. But first, he does a mapping of the liver to cut off the blood supply to keep the seeds from going into other organs.
That's my patient lingo, I'm sure you'll get others here to give a more educated explanation. I think I had about 8 tumors. They were in both lobes and some were harder to get to than others. My MO recommended that I go to him even though I had a lot of tumors in the liver, lung and chest. Evidently, some MOs don't suggest it in a situation like mine. Your liver numbers have to be pretty good also.
I hope this helps you. It's a procedure that's done in most big cities, but try to find a doc who specializes in this local treatment. I put a lot of posts on the local treatment thread as I was going through each my treatments in April and May. I'm long winded and wordy, so you may NOT want to read every detail I wrote! Haha
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I saw my MO today as part of the study and we discussed y90 since the IR feels I'm a great candidate for it. She sort of poo pooed it but if the trial fails me I'm thinking of pushing the point with her. She feels systemic treatment is best cause I gave mets in a few locations but it's been my liver that's had 99% of the progression so I think it makes sense. I'll worry about that down the road for now. Grannax thanks for your info on Y90!
Babs
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Got my test results and my cancer has taken over the whole right side of my live and I have mets on the left side. After coming off ibrance and letrazole I went from one tumor to ten to twelve little ones and my two original big ones. I went on exempla for two months and the MRI showed it progressed so I went on navalbine for two months and we did another MRI and it showed all the tumors I just mentioned. When I went on ibrance I had three tumors and was on it for 16 months. It quit working the last 6months and all hell broke lose in my liver. My liver is slightly enlarged. I'm really worried. I hate waiting 2 months before another MRI because if it isn't working then they are growing. If this does work I think Zoleda is best. Personally I don't think it will work. He is putting me on afinitor and aromasin. I was stage 1 grade 2 and In four 1/2 years it spread to my liver and one bone. Also when I did a pet scan in January it showed 4 to 6 tumors that' were small and my 2 big ones were Bigger. The MRI Showed 10 to 12 little ones. My onc now does mri's for the liver and Pet scan to see if
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