Scared

[Snallygaster]

I am scared. My CT scan now shows numerous mets although small (all under 7mm) in my liver, I have been on Ibrance and Letrozole since July of 2018. My tumor marks have been increasing since August of 2019 but the scans were all great till this one.

So, how bad is this development? Is it just a bump in the road or an impassable landslide? I keep telling myself there are other drugs and all will be ok. I tolerated the Ibrance well and feel good and should do well on a new drug regiment. Trying hard not to have a big pity party and stay positive.

I see my Oncologist on Thursday.

[Barbteeth]

Hi there

I’m in exactly the same predicament and it’s horrible so I feel for you

There are many treatments to consider and there’ll be one that will work for you

My Ibrance failed after about 16 months and my markers slowly increased...I tried everolimus and exemastane but they did nothing so I now have more liver tumours

I’ve just started faslodex injections as don’t want chemo

Let us know how you get on Thursday..all the best

Barb xx

[MacroMom]

I'd call it a bump, or a treatment fork in the road. I've been living with liver mets since I was diagnosed Oct 2017. I think it's great that you got such a long run out of Ibrance! There are lots of other options, from different CDK 4/6 inhibitors to oral or IV chemos that don't have a lot of side effects. Depending on your cancer type there may be immunotherapy options too. If you feel like it, let us know what your oncologist suggests. Chances are that several of us have been on it and can share our experiences.

And...it's just fine to have a pity party too. Treatment changes and scan surprises are tough and scary and it's good to acknowledge that.

Where did you come up with snallygaster?

[Snallygaster in reply to MacroMom]

Snallygaster is the name of my one eyed cat, A Snallygaster is a one eyed mystical creature.

I will let you know what my Oncologist says. I am trying to keep this bump in perspective and remember how good I feel, so much better than two years ago.

[MacroMom in reply to Snallygaster]

Yes...how we feel is the most important gauge! I look more like I have cancer now that I've lost my hair but I feel better than 2 years ago too.

LOVE snallygaster! I looked it up and it said in American folklore it's a dragon-like beast that resides in Maryland and Washington DC area. This is where I'm going to resist making a political statement....

[Red71 in reply to MacroMom]

You just gave my husband and I our chuckle for the afternoon. I too love the name snallygaster!

[Have-faith in reply to MacroMom]

I was dx in Oxt 2017 as well......crazy... doing fine although I have had to change treatments 3 times and am now starting another treatment this weekend when it arrives. Faith

[MacroMom in reply to Have-faith]

Hope you do well! If it’s Xeloda, follow the wealth of advice you can find here about side effects, especially the hand/foot syndrome. I found it pretty easy myself but I was on a pretty low dose, one week on, one week off.

Patty

[Sunnydrinking]

Hi

I’m possibly in a similar position and I really feel for you.

Try & stay positive and I hope your appointment goes well with your Oncologist on Thursday.

I understand that if you have to change treatments there are lots of options, none of them chemo.

A knowledgeable friend of mine recommended that if they do find progression that a blood biopsy would be helpful for various reasons. Perhaps you may like to discuss this with your Oncologist.

Please keep us posted.

Jo x

.

[Bubbles001]

I’ve had liver mets since Feb 2018. I was pretty devastated by the news and retired early and moved to the Gulf Coast of Florida. Almost 2 1/2 years later, I’m doing well and living a stress free life. There are a lot of treatments available and your liver can handle lots of mets. You will find something that works for you. Best of luck.

[Barbteeth in reply to Bubbles001]

I’m pleased to read how well you’re doing with liver mets...since mine appeared I’ve really felt this to be the slippery slope but you’ve cheered me up a bit

Thank you

Barb xx

[Bubbles001 in reply to Barbteeth]

So glad!

[Have-faith in reply to Barbteeth]

I can cheer you up too Barb. I have had liver mets for almost 3 years and am here sending you a note about it. We can live a long time with liver mets. We just have to do our best to keep them small or make them disappear. With new treatments being worked on anything is possible. Faith

[Have-faith]

Hi Snallygaster. This is a bump. You have had a good run with this combo of letrozole and ibrance. This was my first line of treatment and I got less than a year with it! I too have liver mets. Dx out the gate with liver and bone mets. Never felt it, never knew. I am starting 4th treatment routine now. Of course, I am nervous for what side effects maybe, but only time will tell how things transpire. All the worrying isn't productive. You will have choices and options in front of you. This journey is like a roller coaster ride. Be strong and try not to worry! Faith

[Lolabazzle]

It is ok to be scared! We all are at times. I have had liver mets twice now and have been on IBRANCE about a year and at the moment my pet scan is negative, even though my tumor markers have been rising since I started taking this drug. What treatment works for some may not on others and your oncologist will work with you to keep adjusting your treatment. Good luck at your appointment.

[BluHydrangea]

Wishing you peace and calm as you navigate these changes. ❤️

[Pbsoup]

Posted this on Barb's feed, but seems to work here too. Have NO IDEA if it's relevant, but it seems to be recent research results about Kisqali and organ met increased survival. Worth mentioning to your doctor. breastcancer-news.com/2020/...