How are people with liver mets doing?
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Candy,
Thanks so much for your good thoughts. I really appreciate it.
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Bev. in your pocket too!
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JFL what a story! I wish you all the best and many many more anniversaries like this one!
Dear all,
unfortunately I cannot rely on my mothers onco. She has already messed up so many times it is scary! But sadly we cannot change oncos.
So here is my question: What parameters do they check in the liver function tests?
Right now she is taking palbo and letrozol plus the overian supression injection.
Once a month we go to the hospital for the big check up. And there they check the blood and the liver function. Is that the standard or is there anything else they check in your case?
Thank you so much in advance!
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Blondie,
I cannot begin to imagine how hard it must be! But try to think that you are being treated and that once the chemo starts working, it will take care of those stubborn tumors. Also everyday there are new drugs that you may be able to take in the future, so just hold on to that!
I wish you all the best blondie
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Just wanted to report back on my MRI today. I had it this morning, and I had an appointment with my interventional radiologist this afternoon. He read the slides and reported back orally to me. I guess I'll be staying on Ibrance/Faslodex for a while. With my last MRI of my liver in August, he saw 6 lesions, scattered across both lobes. They were small, but he could see them. Today he could only see 3, and they were all very small. He said that were certainly stable, and he would say that they were actually smaller than in late August.
I was seeing him to discuss more blasting of the little suckers from my liver. But he said that he wasn't even sure that if we set up to do that (via either microwave or cryoablation) he would be able to see them to treat them. So his recommendation is to go three more months and we'll take another look and see what's going on. For now, he was very happy (and so was I). It wasn't ALL good news though -- he said if he can see 3, there could very likely be a ton more in there that just haven't appeared. But then he said that the drug combo was keeping them dark, so that's not all bad.
Still no definitive answer on my bone mets, though, so I can't celebrate too much. However, I do feel like I've gotten a three month reprieve.
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BevJen, I’m so happy for you! No change in treatment is great news, hopefully in three months, he won’t be able to see anything else...
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BevJen- Shrinkage is better than good!! Let them all melt away..
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JFL: You are such an inspiration!! When I was first diagnosed with liver mets last March I was sure it was "all over" for me. Then I read your posts in April and found hope. Reading your last post, with your story in its entirety, was breath-taking. I cannot begin to imagine how hard it must have been to make those decisions. I wish you many, many more wonderful years with your son.
May all of us still be posting and cheering each other one for years to come. In case I don't come back and post in the next while -- I wish all of you a warm and blessed Yule
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My labs are good and I was able to schedule my next/ last y90. Merry Christmas to me on December 19! Hahaha. I just have to fit the y90 and recovery in between three Christmas parties. Also, Christmas Day is my birthday. I'm so glad to get this scheduled and done. It should be my last one since I've never heard of anyone having three sets of y90 procedures.
Yes, I do feel better now that I have a plan, at least for this month. January will be full of surprises. I'll start chemotherapy, I have no idea which one my MO will suggest. I will have the AVF embolized, no idea when. So, the New Year will be Treat, Scan,Repeat as it is for all of us.
It will take at least three months to find out how well the y90s have worked, more waiting in the new year. This is what WE do.💞
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Grannax,
So happy that your labs are all good and you are able to schedule your next Y90. I laughed about you "fitting in" the next Y90 but that's a great attitude. And -- Happy Birthday a little bit early!
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BEV...Even though I already told you in the reply PM I have to SHOUT OUT AGAIN ...YAY!!!!!! So beyond happy for you that the IBRANCE is WORKING!!!!! WHOOO HOOO!
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I guess I should put this here since it is about liver..I will cross post in Jane..... My IR called yesterday...he looked at my baseline CT scan that I had for the start of the Xeloda..he said the area of the 2 tumors that he cryoblated is definitely smaller and this is good and that the tumors look to be dead nothing looks live. He said the other remaining tumor that he couldn't get has not grown. So that means the month I was off the meds it didn't grow YAY!!!
I am assuming not with X I will not re-scan until Feb or March..unless we switch treatments...
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JFL - I've seen your posts for years and have always been inspired by how you bravely pursue treatments! You are truly an inspiration!!!!
Bevjen - I'm extremely happy that your liver MRI showed that Ibrance is working and the microwave ablation was also effective!!!! I hope that Ibrance will continue to be effective for you for a LONG TIME!
NicoleRod - Congrats on your CT scan!!! I'm thrilled that the cryoablation of your liver mets appears to have done the job! Given that you were off treatment for a month, it's FANTASTIC news that the other liver met did not grow and that no new liver mets appeared!!!
Best wishes to all of you! Thank you for sharing your experiences. I have liver mets and met with IR at Johns Hopkins. I'm currently on Abraxane and it appears to be keeping me mets stable to regressing. I'm meeting with IR at Stanford (I'm in California and my MO is at Stanford). Once I can get local liver treatment planned, I will share my experience.
All my best to everyone!
Theresa
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Grannax- Glad the Y90 plan is going well. Oh, the unknowns in the new year. Gotta love it. Prayers to you always. And Happy Birthday early.
Nicole- Woohoo !!!! Prayers that next scans will be good too.
Theresa- Stable to regressing is good news. Keep us informed.
Not much new here with me for now. Next scans due in Feb. Continue I/L for now.
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JFL, you are amazingly strong! It gives me hope I can keep going a few more years. I am just joining this group after having been dx with Stage IV about 9 months ago, 7 years after my original Stage 3 dx. Liver and bone mets. So far I have gone through radiation tot the left side of pelvis fort pain control, Ibrance/fulvestrant/Xgeva, Xeloda (cardiac vasospasm reaction so discontinued), Piqray and now Navelbine. My liver mets keep slowly progressing on all treatment although my bone is stable after Piqray. The liver biopsy showed the same PI3K mutation so they are not sure why it doesn't work on the liver mets. Anyway, I am guessing when I go on Tuesday to see my MO she will put me on eribulin. What are others experiences on that chemo drug? Looking for some positives in this roller coaster of a journey.
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So incredibly humble by all the effective treatment plans here!!! Strength and Courage!!! Grannax, Nicole, JFL, and BevJen...,,literally, all of us hanging in here to take that deep breath of relief and live the life that was set out for us.....,always in my prayers and praying that anyone that moves on from this group, finds the treatment that is right for them. Grateful today to start month 19 of Ibrance/femera with stable but slightly rising tumor markers😬 Merry Christmas and much HOPE for the new year,my friends💞
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Thank you for all of the kind words and support here! It does mean a lot.
BevJen, great news about your scan and remaining on Ibrance! Ibrance/hormone therapy is a combination where it can slowly chip away at the tumors over a very long period of time.
Nicole, such a relief to hear about your scan! Great news.
Grannax, you are in "beast mode" with these Y90s! Such a tough cookie.
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Anewbreath Thank you! JFL, beast mode, LOL I like it. I'll tell my kids what you said. A beast-mode Granna. Yes, I am much bolder at 71 than I was in my 40's. MO's watch out for BMG! Hahaha 💞
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You ladies are all sooo freakin awesome and I BLESSED ...to have met you all...all of your replies and cheering me on just made my heart so filled...my "cup runs over".
Can I ask you all something?...A while ago I posted (months back) stating that with stage 4 we only have a 30% chance of living 5 years...but you all corrected that statement saying something like it wasn't accurate but I cannot remember why??? Can someone "school me up" ...I have a friend quoting that and depressed I want to encourage here those numbers are not accurate....
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Nicole rod- I don’t know of the formal statistic. But I just passed 7 years out of metastatic liver and brain disease yesterday. And 9 since original diagnosis.
I don’t go by the published numbers. They change every day and no one knows what our “ expiration date is”
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Nicole, at least part of the reason the stats are inaccurate is that they are based on older data. I think that the recently "updated" data that came out a few years back only runs through 2012 or so. With new treatments coming out every year, lives are being extended, sometimes by tacking on a few months with one treatment here, a few months on another there, and before one knows it, it adds up to another year or two. Also, in those stats are all different types of patients - those who (sadly) may not have access to all the treatments we have access to or cannot afford to pay for any treatment and do not want to burden their families with medical debt, some who do not have the quality medical care we have or get lost in the system because they are unable to advocate for themselves or do not know they can do so, some who choose not to undergo any therapy, some who choose to try alternative therapies only, some who decide to stop treatment when they get to the point where they run out of hormonal or targeted therapy options and can no longer avoid chemo, some who didn't really have much will to live to begin with and are not interested in pushing the limits of treatment, some who have other co-morbidities or were in very poor health when diagnosed which can significantly decrease survival time, some who are near or past their natural life expectancy when diagnosed and may pass away from other reasons before succumbing to cancer , etc., etc. It will never be apples to apples.
There may be other reasons the stats are off and hopefully others will chime in.
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Stage 4 survival rates
The American Cancer Society (ACS) states that the five-year survival rate after diagnosis for people with stage 4 breast cancer is 22 percent.
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As JFL says, more eloquently than I, statistics are just statistics. They are continually being updated because, with newer treatments, they continually change.
Another point to consider her is that when reports come out on data from a particular trial, they are reporting at a specific point in time. In other words, the study folks have to report. So they report a snapshot at a particular point in time. That doesn't take into account the people who continue to do well on a particular treatment beyond that initial study period. Perhaps that data will be updated later, but that's later. So that's something else to consider.
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Thanks ladies. I knew you all said something about it "including everything or everyone..." something like that...
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so hopeful after reading the good reports from everyone here. Just had my first doxil on Friday. Used the cold cap therapy to try to save my hair. Looking forward to Christmas with all my kids home And getting family pictures 😉
Jan 6 is y90 mapping and will be here before I know it.
Dee
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Hi Dee,
I just finished 6 months of Doxil...hair loss is not a typical SE of this medication. It's a good idea to cool hands and feet, but you really don't need the cold cap..
I hope it's an an effective therapy for you and good luck with the Y90...
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I told my granddaughter about JFL saying I was in beast mode. She loved it and said I should have a t-shirt printed and wear it to the cancer center. Lol Maybe if I added y90 to it I could do some advertising for my IR. Dee, Jan 6 will be here before you know it.💞
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Ha, Ha. Beast Mode Grandma!
AlabamaDee, like Frisky said, Doxil (liposomal doxorubicin) is not thought to cause hair loss. I haven't heard of anyone losing their hair and I didn't lose mine. I have done cold caps on other medications and it is pretty miserable for me, not to mention expensive, although I will continue to use it on drugs that cause hair loss. If you don't need it, don't put yourself through that. To confirm though, standard doxorobucin/Adriamycin/red devil given to early stage BC patients causes immediate hair loss. Is it possible whomever is giving you the cold caps is confusing the two drugs?
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Nicole and others concerning the stats....
JFL- good explanation.
But to me it is what it is. Only the Lord knows how long I will live with MBC. He will take me when my time is up. But as Frisky posted, the ACS stats say 22% live to the 5 year mark. I read somewhere that it is up to 26% now. And yes with the new treatments coming out, those percentages should get better. But even with the points JFL made, MBC people just are not going to live a full life expectancy. It is what it is.
I don't want to sound cruel or melodramatic. But I want to live in reality. MBC, at least for now, is incurable cancer. I am 49 years old. I do not expect to live to 80 like my mom did. And my dad is still alive at 93. I do not expect to live as long as they did. My life is being cut short by this cancer.
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Hi All - Need a little vent...
Was all set for my 8 hr chemo day in the IMMU - 132 study...WBCs too low at .5. No tx today. Come back next Monday and we'll try again...
So incredibly disappointed.
Gumdoctor
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