How are people with liver mets doing?
Comments
-
Shetland, that is a very great idea that i have never thought of. My Onc the other day did ask about my kids and then told me a few details about hers, so it felt so much more personal which goes a long way.
Z, I felt the same especially because she pulled me off the letrozole along with ibrance very quickly because of the elevated enzymes, even though I showed improvement in my scans. We determined the enzymes were from the Ibrance but then she put me on Faslodex, the second line. So I do not see why I can't go back. i did have a second at UCD and she said I could try going back which i just told my Onc. but she says no. It is definitely a subject I will revisit after I read up more.
Thanks Stephanie for the links, I am going to read them right after I leave here. I am so glad you have no signs of jaundice and hope you are not experiencing too much discomfort from the ascites. You have helped me tremendously as has Zarovka!
Jillianclaire, I have had all sort of jabs, stinging sensations and just general achiness in my rib area with no progression.
Elle, another good book is Anti-cancer, a new way of life...All of them I walk away with a few new ideas, recommendations, insights and just general hope inspiring stories and anecdotes.
0 -
Shetlandpony - what a brilliant way to show compassion for the medical team. I think that is what I am getting at. People working in oncology have chosen to help people who can be very hard to help which is brave thing to do. I myself would have a hard time staying present emotionally all the time. Those types of gestures would go a long way in supporting them and helping them humanize a medical file and it shows respect for what they do. I will start doing that myself.
>Z<
0 -
Shetland, that is a beautiful gesture that benefits all. I'm now planning to make my onc a card with some summer vacation pics. She has incredible empathy but she's also a human being prone to burn out in such a stressful, demanding field. Thanks for sharing that amazing idea.
0 -
Wow, Artist, Zarovka, and Kaayborg--that makes me happy!
0 -
Shetland, I love that idea!! I usually bring my youngest(3) little guy to my appointments, I think it helps my nurse and onc to visualize me as a mother to very young kids and to know how much I am needed. My husband made bracelets when I was first diagnosed, just the little rubber ones, and we gave them to every dr and specialist we saw, and just asked them to put them somewhere they might see them often and to remember me and my family and any possible thoughts or ideas they might have that would help.
I did consult with my onc last week about the different SUV values on the 3 spots in my liver, and you guys were right. She thinks it is probably test/reading error and that she considers it a stable scan. I felt immense relief. I know the anxiety will start building again in a few weeks, but for now I will take the break. I hope everyone here is doing well. I am off to catch up on all the posts I have missed!!!
Alissa
0 -
Hi all, I started my first dosage of Xeloda this morning, three 500 mg. tablets, every twelve hours, i.e. twice a day. I woke up early so I could eat something before I began. Any tips? I wanted to write this weekend but did not have time. Wish me luck. Hoping for no effects. The protocol for me is two weeks on, one week off, then I have blood work and see my oncol. after the week off. Also I will be having cat scans every 9 weeks. Did beginner Xeloda users have side effects, if so, what were they. Are there any Xeloda people who have no side effects from taking Xeloda. How is everyone doing who is on Xeloda? I'd like to hear experiences, etc. Thanks
0 -
HI NatureGirl,
Thanks for checking in, I was wondering how you're doing now and am glad to hear that you've begun another promising treatment.
You may want to visit and bookmark this forum's Xeloda topic, as you'll get clearer feedback there:
https://community.breastcancer.org/forum/8/topics/...
Sending a warm, healing hug, Stephanie
0 -
Hi all
Today's my 45 th anniversary! So happy to be here and to be able to celebrate with my DH and DD. These special times keep me going forward- and all of you too!
Babs
0 -
Thanks Stephanie for the Xeloda link and your warmest regards. Hope you are hanging in and have as pain free days as you can my friend!
Happy anniversary babs!
0 -
hello ladies. Well I've had a nice 3 week break from chemo, thus Fri I go back and see doc. Hopinf markers are still down, they were at 17 about 5 weeks ago. We will be discussing maintenance options if bloodwork is good. I have awful neuropathy in my right hand, have to eat left handed. I am weak and can't even trot after my dog. At least once a day I think about dying and how long I will live. My onc says I am having above average response to havalen. About 99% of disease is gone, Hope it lasts. I think he still scan in October. Last week i started getting some pain to the left of my right rib. Had it before, it doesn't really hurt but aches. I really want my strength back and my hair. I am going to ask him Fri about maintenance drugs and see where we go from here. I am scared he will tell me my markers are up again. I really want my life back. I am encouraged by ladies living over 4 years and longer. I am going to try to make the Rick Simpson oil soon.
Hugs to all
0 -
Happy anniversary Babs!!!!
0 -
Happy Anniversary babs !!!!
0 -
nature girl- I've been on Xeloda for almost 4 years. PM me if you like.
The Xeloda thread is full of information.
Hope it treats you well
0 -
babs- hope you had a wonderful celebration
0 -
Thanks for the anniversary wishes. I had a great celebration with my DH andDD. My son had his girls FaceTime us and sing. So sweet! And my DDs boyfriend who lives in Paris texted us anniversary wishes. Meeting him this Sunday. So excited for her. I think he's the one!!!
Babs
0 -
For momallthetime and all dealing with unwanted weight loss
The best way to fight weight loss linked to illness
Healing light, Stephanie
0 -
Artist, like the others said, Femara is a non-steroidal aromataze inhibitor, like Arimidex. It is not like Faslodex, which is an estrogen receptor downregulator. AIs prevent the conversion of the hormone precursor aromatase into estrogen, to lower circulating estrogen levels. In contrast, Faslodex destroys estrogen receptors permanently so they cannot receive circulating estrogen. Faslodex resistance does not necessarily mean you will not respond to another class of hormone therapy.
Additionally, there are even studies that show that people are not necessarily cross-resistant to drugs of the same class, such as Femara and Arimidex. Most oncologists will cycle you through all the hormone therapies because of these reasons You may respond to one but not the other. In your case, Femara worked for you and you are not resistant to it now so you have a likelihood It would work again.
I have taken my hormone therapies out of the traditional order. I have had Aromasin and Faslodex but not yet Femara and Arimidex. My MO says it doesn't matter the order. The order is more based on how the studies resulting in FDA approval happened to characterize the use.
There is also Tamoxifen, a hormone receptor modulator, which works by blocking estrogen receptors in some but not all types of body tissue, such as breast tissue. Not sure if you have taken that in the past.
I would request a second opinion or a reconsideration by your doctor!
0 -
This may interest readers interested in unusual hormonal approaches to MBC:
https://community.breastcancer.org/forum/8/topics/...
0 -
wow babs! 45 years is awesome! Super congrats and cheers to many more! maybe DD's boyfriend will invite yo to Paris? (My dream trip)
Thanks for that explanation JFL. I agree that if it worked before I should be able to recycle through that. My 2nd opinion Onc said yes so I will definitely push for it. Also I have not tried Tamoxifen yet. Thanks for the link Stephanie! I hope you are feeling fairly fine and pain free too and have something good going on for the long weekend. Livn, sorry to hear of the severe neuropathy in your hand. I have had a severely injured wrist for months so know what it is like to try and get on with life with one hand. Sounds like good results with your meds at least and hope it continues. We all want our life back!0 -
Artistathea. Thanks for the anniversary wishes. I'm hoping DD s boyfriend pops the question soon. She'd move to Paris if so and we'll be there a lot. We love Paris- she lived there twice and we visited often.
Bab
0 -
Well here I am with a liver full of all little lesions. Hoping faslodex does the trick after letrzole and Ibrance failed.
Hugs Carol
0 -
Welcome to the group, Carol. You will find a lot of good information from the posters on this thread. I hope Faslodex shrinks away your lesions.0
-
JFL- Thanks for the welcome ! How is "X" doing...
Hugs, Carol
0 -
Gramen,
Navelbine was the magic mojo that worked on my liver mets. I was able to stop using it over a year ago as it shrunk the 4 tumors I had to where they can't be detected. My onc is very cautious, so he tells me that they may still be there, just too small to be seen. I'm ok with that as long as I can stay off chemo. So, keep on the Navelbine as long as the onc will let you!
Debbie
0 -
Welcome Carol -
I have a lot of little lesions in my liver, but at the moment they are too small to be seen. May fasolodex do that for you.
>Z<
0 -
ChichiMaine,
That's very encouraging to hear! And it helps a lot that the Navelbine is relatively "easy" for side effects.
0 -
Hi Carol, Sorry you are here too but always nice to hear from you. I hope Faslodex works for many years for you. Nice to "see" you to gramen! Go Navelbine! Nice to hear your good results Debbie! Whop whoop! babs, Paris is my biggest dream.....maybe as soon as the house sells......
0 -
Hi, there, Carol/Maltese. Shoot. I wonder if ILC especially tends to scatter lesions across the liver when it goes there. Do you have pain from it?
LvinAZ, it's good news that you have good results from Halaven. How was your Friday appointment?
Mama2/Alissa, I'm glad to hear your onc considers your scan stable and that you feel you can take a break from the anxiety. I have had two areas with slightly higher SUV values on the two most recent scans, but nothing definitive. For the most part I am choosing not to worry about it. Maybe something is going on and maybe not. If it is, maybe it will go away again.
Happy Anniversary, Babs! Ooh, Paris, how romantic. Hoping to hear an engagement announcement for your daughter...
0 -
Shet- I was so disappointed to get the progression in my liver. I do not have pain When does that start? Most of my discomfort is from bone mets or from lack of estrogen. I just ache and my energy is low. They are watching me close. I go for second loading dose of faslodex this week. I had this cancer in remission for 18 years then this. I've been in a funk since my scans showed progression. Carol
0 -
Hi Carol,
You might not get sick from liver mets at all!
Don't make the assumption that you'll follow a course of increased symptoms, pain, nausea, vomiting, swollen liver, ascites, jaundice (turning yellow), rising tumor markers or any of the possible mis-adventures along the way.
It's very hard to tolerate the unknowable future.
But that's our best bet for staying open to the present moment.
To get all philosophical on you, we only live in the present, all the rest is imagination and aspiration.
It's good to have intentions for treatment approaches and goals, but we can't know the future!!!
Carol, while I'm sorry that you are in a funk now, I don't expect it to persist. You can be strengthened through this challenge - not necessarily to become a cancer conqueror, but to live ever more in the present, able to ride your waves of phases and even enjoy the unknowable future.
Please be kind and gentle with yourself, this news is a lot to wrap your mind around!
Carol, I am wrapping you in a hug of love and confidence.
We are listening and here for you, Stephanie of the don't know mind (nearly 3 years of liver mets and still not yellow and haven't really vomited.)
0
