How are people with liver mets doing?
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Dear all, we just got mum's MRI results. Slight progression of the three known mets (they are less than 2 cm) and three new mets (smaller than 1 cm).
Oncs decided to stop Kadcyla and start Afinitor/Aromasin. I'm quite worried for this combo, since I read about very unpleasant/bad se. Moreover I really don't get their plan. They gave her Kadcyla (even though according to her latest istologic exam she is ER 90% PR 10% and HER2 neg (FISH)) and now this...
I'm so scared by this situation... It's so hard to be strong when you know that there has been progression.
Do you have any advice or experience to share?
Prayers for you all
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Worried daughter-
They are switching to drugs that work on hormone receptive cancer. the previous drug she was on is used mostly for Her2+ breast cancer.
I was told that drugs for hormone sensitive cancer and her2+ cancer don't play well together I.e. You treat with one or the other. I am assuming they are changing back to drugs known to fight her hormone receptor positive cancer. They might be assuming that the mets that are growing are more susceptible to those types of drugs. That would be supported by her latest biopsy results.
I don't have hormone receptor be so can't speak about the drugs and SE that go with treatment but many members here can help with that.
I hope the new regimen shrinks the mets.
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Dear Daughter..I think there's an aromasin/affinitor site. So hope this takes care of the old & new buggers!
Leah...I'm incredibly happy you're feeling better & able to eat...keep your strength up for 11...oh my...grandkids!!! You are so blessed...and so are they :-). I have to say when I'm around the littles, my heart is so happy...definitely pure joy! I'm very touched that your onc was so open with you. Sounds like he searched for the right combo & found it! Prayers you continue to feel good & your liver heals!!!
Woody...I know both your oncs treasure you & you've been able to "bounce things off of each one" at different times, so hopefully that can continue!! Better yet...lets hope there's nothing to bounce off them :-)
Leftfoot...I hope you found a good replacement for your onc. I already told you how distraught I was when my onc was out on medical leave, after 5 years with her...and the fact that I feel so well cared for with my new onc. Hoping!
Artist...such good news...may it continue...forever!!!
Be well :-)
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Thanks Leah and Babs, my scans were good and TM's down but liver enzymes were up so Onc has me seeing a specialist just for another opinion next week. Also been feeling a little short of breath today after a marathon shopping trip so have to have that checked out now. Neve a dull moment darnit....Leah, that's good that numbers are moving down and you are feeling better! Isy, there is reason for tons of hope!
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So my liver enzymes are up again today so my Onc is having me stop Ibrance for a month and monitoring every week to see if a trend shows up. I am kind of nervous about that but what are you gonna do? If the numbers drop we may try lower dose. I thought I was on a positive roll. Always a wrench in the works....Sunday I had gone to the ER because of the shortness of breath and rapid heart rate. Seems like it did calm down during the week off. Anyway, thanks for the last post Ronnie Kay! Onward....
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Artist ,
I am happy your scans are good , i hope you soon find out what is causing the liver enzymes to flare up. It could be Ibrance . Taking a small break is not a bad idea while monitoring. If they drop after stopping Ibrance then you will have your answer. If not they will look for another reason. I hope it will all clear up soon so you can put your mind to rest. My prayers are with you.
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Thanks Woody, it would be nice to get through the Holidays without so much stress. Have you returned to your country yet?
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no Artist, i will leave on the 5th of December . I will have my pet after Xmas and new year lollll i don't want any surprises this season.let's make a deal we do not worry till after the first , what do you think? Both times my cancers showed on 11 of Dec. and every time on my birthday 6 of Jan i was in treatment lolll. This year i am ignoring thid and waiting till after the holidays . Lets enjoy our holidays
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Woody, I'll try my best!
I'll be thinking of you especially on Jan 6th!0 -
Woody, great idea to save scans until after the celebrations. Cancer stuff will just have to wait because you have important things to do, like enjoy the holidays! I do have a scan coming up before the end of the year, but fortunately my TMs are still good so I'm not too worried.
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Woody- My original diagnosis and my mets diagnosis were Dec 7th and 13th two years apart. It has made getting through the holiday season a little bit hard. My daughters birthday is January 2nd. I feel for you. May you enjoy your holidays and have a great scan in the new year.
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Artist i will be thinking of you too and praying that you continue to do well.
Shetland, you are on the right track and since we both have our scans around the same time let us both believe we are still going to be clear God's willing. We will celebrate and enjoy the season.
Leftfoot,
It has been a while , it is so odd that we get our dx around the same time and so cool that one of your daughters is born Jan 2 , i hope every december you get a new renwal on life and not a dx
and may God bless you and your daughters. Be well.0 -
Thank you Woody and the same to you! And to ALL of the ladies here as well, best wishes on everything going on, the good and the not so good. Have a blessed and wonderful Thanksgiving!
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Hello ladies,
Had my first PET scan since 07/08 dx and 3 months of Ibrance/letrazole treatment yesterday. I have an appointment with the onc tomorrow, praying for some good results!! My tm's have gone up 2 months in a row!! Thinking of all of you!!
Aliss
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Good luck on your scan results, Aliss! Ibrance didn't work for me, but Xeloda seems to be doing a good job. Not too difficult, either.
Shetland and Leftfoot- My 30 year-old daughter's birthday is Jan. 2nd, also! Quite a personality, that one!
I hope everyone is going to be with family on Thursday. If we have family we love, we are blessed and have much to be thankful for, even with this stupid disease. We lost someone very dear in our family this past summer, so our holiday will be bittersweet. But we still have a lot of love to go around.
Happy Thanksgiving, everyone.
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Aliss,
Good luck on your scans resutls, i hope your onc will have some good news for you.
Happy thanksgiving everyone ! May we all be surrounded with the love of our loved ones .
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Received my liver biopsy result---turned out I am Her2 negative. I started Taxotere last week with 6 Xeloda pills a day. 3/3. My WBC dropped so they had to stop the Xeloda, Monday and Tuesday and instead gave me a White blood cell boost. Today, I'll find out if I can continue with Xeloda again. I dislike Xeloda, ---diarrhea, nausea, mouth sores and just blah, but I know I need it. I have quite an extensive liver mets going on. My doctor is still trying to figure out the cocktail to put me in.
Happy thanksgiving to all!0 -
sandilee and woodylb, forgot to formally thank you for the initial replies. My husband is back home with me. We sent a red cross message and he flew in just in time for the first treatment last week.
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iliveformybabies, I missed your initial introduction as my notifications were wonky but I wanted to reach out to you and share my situation for its similarities. I find comfort in the knowing more and more people walking in similar shoes. I am 38 and was diagnosed on my family beach vacation in FL with extensive liver mets, just 7 months after treatment for stage 1a triple negative breast cancer. My girls are 12, 9, and 6 years old. I had two large tumors 6x10cm and 8x10cm, which at last look shrunk to 2x4 and 4x7 and will hopefully be even smaller when we take a looksy again next Thursday. I also have an uncountable number of smaller tumors in both lobes of my liver. So far I haven't met anyone with as much cancer in their liver as me. But, I'm doing great! I feel great, my treatment is working well (Gem and Carbo are my new besties), and I feel much more hope than I did at the onset of dx. I can see myself living out some beautiful , full years where before I could only see my death.
The doctor in the tiny hospital in FL made a very big point to me about seeking treatment in a large center. I really encourage you to explore all of your options as far as that goes. Suggestions to get treatment locally but see an oncologist further away sound good to me. You may also wish to look into Cancer Treatment Centers of America. They will fly you for treatments for free but you do need the right insurance. They'll check for you. My aunt was treated there and spoke very highly but it didn't work for me insurance-wise or for convenience. I am close to a great center locally so it was a better choice for me.
Best wishes and keep us updated. So glad your husband was able to be home for your first treatment. His words that you posted in a different topic really moved me. He knows well the truth. It is about today and the better I am able to embrace that truth, the better I live. You're in my prayers.
Missy
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iliveformybabies,
It is good you got your biopsy results this way at least yoyr doctors will know which way to go . I am glad and happy your husband was able to attend your treatments.
I am not sure xeloda and taxotere are good together they maybe too much. Since you responded to taxol the first time and may respond to docetaxel as well and then go on xeloda alone. Seek a second opinion if you are not comfortable with this one also like kaayborg said check out cancer centers.
I hope taxotere on its own will do a good job , it is a tough chemo and it is likely to lowe your WBC. On its own but you can always get a neulesta shot or neupogen after each dose to keep your WBC in check.
What you have in your mouth is from taxotere not xeloda . The worst of xeloda is hand and foot syndrom which is neuropathy , unfortunately taxotere also causes it. So you were getting a double effect.
I hope you onc finds soon the right combination in which yoy feel comfortable and is tough on cancer. You are in my prayers with wishes of good health and healing thoughts. Happy Thanksgiving.
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Hi kaayborg,
I also had a large liver tumor (11 cm) that shrank to about 4 cm pretty quickly, but then woudn't get any smaller. I ended up getting ablation on it and the interventional radiologist said that it was just scar tissue.She said it is very common with large breast cancer mets to the liver to leave scar tissue.
Just wanted to let you know that in case your latest scans don't show a lot more shrinkage.0 -
I also wanted to add that my inital liver mets diagnosis was a liver full of tumors. The liver speicialists basically said they couldn't help me because I had too much cancer. It was everywhere in my liver. Xeloda and Tykerb took care of that for me and I was NED for over 2 years. I had one solitary met come back but this time the liver speicalist said they coudl help me. I had a partial lobectomy and my last scans were NED in my liver again. So don''t give up hope. Even livers full of tumors can get to NED. I know I still have cancer cells in my liver, but they are controlled for now. I will take that.
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Me too. Diffuse involvement of both lobes, multiple mets (largest one 5x10 cm), not a candidate for local treatment. Chemo worked. A PET scan can help distinguish scarring from active mets.
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Absolutely love those positive stories. Thanks for sharing. Question for anyone. I've noticed people mentioning seeing liver specialists. This has not been mentioned to me. Is this just for surgery and/or ablation? If so, maybe that's the reason since I was told from the beginning that I'm not a candidate for either at this point. We'll try ablation if we can get it down to three or less tumors, I was told by my MO.
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Best of luck Aliis on those scans! Good message there Sandilee! Kaay I saw a liver specialist just to get a second pair of eyes on liver enzyme trends and to help collaborate on issues. I am glad I did. He answered some questions my Once seemed a little fuzzy about and just had a wonderful educated yet comforting demeanor. I was told I am not a candidate for ablation or resection because I have a few lymph nodes with mets.
Disappointed to eliminate another remedy...I will take what I can get too Leftfoot! Happy Thanksgiving all!
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hi all and happy thanksgiving holidays to all American sisters!
Finally have some good news to report after latest scan everything is shrinking and many tumours now necrotic. All LFTs plummeting downwards. Gem/carbo is doing its thing for me as it seems to for so many of us. I'm also tolerating it really well so long may it last!!
Onc told my husband to take me out somewhere and celebrate tonight. Having sat in chemo ward together for about four hours today not sure if either of us is up to it but definitely celebrating in my head. All the best to everyone,
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wowwwww wonderful news Isy , really wonderful . Happy dance for you so you continue to respond to carbo/ Gemzar hoping the rest of the treatment will abolsih all tumors. Go out , have fun , celebrate and forget about cancer for a while. In my prayers always.
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Very good news, Isy!
Iliveformybabies, I'm so glad your husband is home now.
Kaayborg, I think that yes, the liver specialist is for any local treatment to the liver, if you are a candidate. Though I was not when the extensive mets were discovered, my onc said that if anything pops back up there now, she will send me to the liver specialist. Sounds similar to what your onc said.
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Woody, thanks for your lovely and positive reply, as always.
Shetland, just LOVE Shetland ponies. Used to ride a little black one called Tinker. And a right tinker he was too!
Hope everyone has a good weekend
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Yea, Isy! Sharing the gem/carbo love with you. Long may it last for sure!
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