Liver, lung and spine mets

[BangorBelle56]

Getting more and more worried about results of CT and MRI this Tuesday. The result I am most worried about is the liver mets progression. Have already tried Ibrance and some of the tiny liver dots got to 2.6cm. It seems liver mets is also hard to treat with chemo. I am only 63 and feel I am running out of options. I love my life and would love to hear from someone who has had my mets for several years and are still doing great. Thanks

[Barbteeth]

I had SABR radiotherapy for my liver met so can stay on same meds

I’m 65 and like you want to be around for a while longer

Barb xx

[BangorBelle56 in reply to Barbteeth]

Thanks Barb. I think because I have lots of liver lesions the SABR would not be an option. I think you had one nodule? Just going a little crazy when I look at the stats for liver mets. Hope your pain patch is working well x

[Barbteeth in reply to BangorBelle56]

Oh I think you replied to me before re your mets...sorry I get mixed up

I think the pain patch is helping and I can have stronger if necessary

All the best...and DONT look at stats...they’re very out of date...I used to do that and it’s the sort of thing that can make you crazy with worry over something that’s not relevant to now

Barb xx

[BangorBelle56 in reply to Barbteeth]

So glad they are willing to give you a higher dose if you need it. Ruth xx

[Mindysooty in reply to BangorBelle56]

Honestly dont look. Barbs right its all out of date. I saw a post that said something about 6 months if spread to bones. Totally freaked me out and sent me on a downward spiral. Clearly thats not right and I panicked for nothing. Please, try not to torture yourself as everyone is different. God willing we'll all have many years to come. Very best wishes for good results 😚 x

[BangorBelle56 in reply to Mindysooty]

Thanks 💕

[beachlover65]

Hello, I have had liver mets for 3 years. I have tried Ibrance, Affinitor and Aromisin, and now Taxol. Taxol has been working for 8 months with great success, however markers are now going up again. Based on what I've read here, I may be trying Xeloda next. I, too, am scared about liver mets, but my doctor says there are still options left to try, so that gives me hope. We are in a battle and we must keep up the fight! Hang in there and know there are more treatments for you to try!

[BangorBelle56 in reply to beachlover65]

Thanks Mary, That is very reassuring. Do you have a Picc line for the infusions? I am finding the skin at the edges of the cover/plaster keeping the Picc in place is red raw and very painful. x

[beachlover65 in reply to BangorBelle56]

I have an under-the-skin port that is used for infusions. I don't have any problems with it. Is that what you mean?

[BangorBelle56 in reply to beachlover65]

Yes that is what I mean. I seem to have developed raw skin under the protective cover (after 9 weeks) which is quite sore.

[beachlover65 in reply to BangorBelle56]

I'm sorry you are having trouble with this. What does your doctor tell you to do about this?

[BangorBelle56 in reply to beachlover65]

It has only happened in the last week. I will ask the nurse when she takes my blood sample tomorrow 😀

[BangorBelle56 in reply to beachlover65]

Thanks 💕

[Lemur2015 in reply to beachlover65]

Hello, I have liver mets progression now. I've been on Ibrance/Letrazole for 9 months before its stopped working. Just started Verzenio and Faslodex last month and tumor markers almost tripled. Seeing doc mid September for more labs and another CT scan which I just had in July. I really don't want Taxol and hoping he will look at other options. I am only 57 and want to be around for awhile. Such an uphill battle.

[beachlover65 in reply to Lemur2015]

Your doctor should allow you to choose from other options if you don't want Taxol. Taxol is a two hour infusion (with the pre-meds), and neuropathy is pretty common. My doctor has now given me the choice among Xeloda, Gemzar, and Navelbine. Xeloda is given orally as a pill, so I think I will take a break from infusions and try it.

[Lemur2015 in reply to beachlover65]

Thanks so much for replying. This is the best site and so much knowledge here. I get more info here than anywhere else.

[BangorBelle56 in reply to Lemur2015]

Thanks

[MacroMom]

We've been in touch before about liver mets, just wanted you to know that so far the oral chemo Xeloda seems to be working well with very few side effects. I chose it in part because it is metabolized in the liver and seems to work better there than some other meds. (My liver mets also increased in size and number on Ibrance). I take 1300 mg twice a day, 7 days on, 7 days off. If that's an option in UK it may be worth asking about. I'll get labs done again tomorrow and give you an update. I'm 64 and was diagnosed in Oct 2017 with extensive bone mets + small liver mets. Right now I feel stronger and healthier than I have in a few years, so I'm going to enjoy it while it lasts. And I'm reassured that there are other options on the horizon. Hang in there!

[BangorBelle56 in reply to MacroMom]

Thanks. I forget who is who on this board. Very happy for you.

[beachlover65 in reply to MacroMom]

Thanks MacroMom. Because of what I've heard from you, I may be switching to Xeloda. I am going to get one more marker number this week and see how it is. If it's bad, I am switching. My last number was up 31%. Not good!

[MacroMom in reply to beachlover65]

I'm getting labs tomorrow too, we can compare markers! I've had 5 rounds of it so far and still no issues with hands and feet. If you do start on it and use the cream "Udderly Smooth", be sure to get the "Extra Care 20" type as it contains urea which seems to be the helpful ingredient. Here's to dropping markers!

[beachlover65 in reply to MacroMom]

Yes, let's compare!! I was at 63, but then went to 81. I was in the 800's in December before I started Taxol. How about you?

[BangorBelle56 in reply to beachlover65]

We don’t get markers here, only scans. Will be interested to hear your marker results.

[MacroMom in reply to beachlover65]

My CA 15-3 was 927 when diagnosed in Oct 2017. Dropped to 18 by Feb 2018 on just Letrozole, then slowly climbed back up to 100 in January of this year, 300 in March on Faslodex, up to 578 in June after Ibrance didn't work. After two weeks of Xeloda it went back down to 364 last month and I'm hoping for another big drop with tomorrow's labs. How has Taxol been for side effects?

[beachlover65 in reply to MacroMom]

Taxol has caused neuropathy in my feet and hands. That has been the worst.

[beachlover65 in reply to MacroMom]

Hi MacroMom! I think I just read in one of your latest posts that your marker was good. Mine unfortunately went up again. I will be seeing my doctor this week and switching to Xeloda. I got my udderly smooth cream with the extra care 20 based on your recommendation. I will be sure to ask you for advice on how I may be feeling once I start. I'm glad that I have this forum to contact you!

[MacroMom in reply to beachlover65]

Me too! Reading previous Xeloda posts helped me have confidence in it when I made the switch. And yes, CA 15-3 dropped another 110 points the second month. You may have read in my other post that I also take B6 (200-300mg/day) and curcumin, per the advice of my Naturopathic oncologist. I think COQ 10 is helping keep my energy up too, but it's so hard to really know what difference one supplement is making. But even if it's "all in my head", as long as I keep feeling well I'll take it!

[beachlover65 in reply to MacroMom]

Absolutely! I hope that you keep feeling well!! I'll let you know how I do on Xeloda! I'm hoping for more months of stability with little side effects!

[BangorBelle56]

Thanks

[MacroMom]

This is encouraging to me too. I haven't had IV anything yet and it still scares me to imagine it. But, as in every other step of this journey, if I get there it will be one step, one day at a time, with a lot of support from here!

[jstickrod in reply to MacroMom]

I agree totally with you. I, too, am scared if I get to the point of infusions rather than pills. I was on Ibrance/Faslodex for 18 months, and got switched to Xeloda due to increase in liver mets. I have been on it since April, and have very few side effects. My tumor markers continue to go down, so overall, I am pleased with the progress of how this drug is going.

[Nananewf54]

Wish i had some goodnews .. I just had scan on Sunday and multiple lesions on my liver also. Cant see my onologist till after Sept long weekend . i am very worried whats ahead fo me .. Hope it can betreated ..

[BangorBelle56 in reply to Nananewf54]

So sorry to hear this. That seems a long time to wait to see your oncologist.