How are people with liver mets doing?
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Hi Sonya, I am so sorry for your situation. I just found out Friday that my PET scan showed many liver tumors, after being nearly NED six months ago. My oncologist is having a liver biopsy done, to see if I've changed from ER+, to ER- or Hr2+. This might be something to have checked to see if you are still being treated properly. You don't mention that you have had IV chemo. Abraxane worked really well to kick my liver tumors back. Have you had any DNA testing done, to see what treatments will work the best on your tumor type? I'm waiting right now, to hear what my next treatment will be. I'm feeling scared too, you're not alone.
I wish you great success with the new med. Prayers to you and your family.
Best, Melani
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Sonya,
I understand your anguish and frustration. When markers and tests go up during treatments , like it did on affinitor , it would be mainly because the treatment has failed. When people are NED it is usually after six months it the tumors come back during this period then it would not be NED.
You did not mention what type of cancer you have, is it IDC or ILC?
Maybe you should request a new biopsy to see if your cancer have mutated and this will help more in defining your treatment.
Unfortunately, in cancer there is no trend in treatment, it does not work this way. Each person is different in response and it depends on your type of cancer and subtype, grade, location and a lot of other issues. It is up to your doctor to decide what would be best suited for you and your needs. Ibrance is the latest meds used for ER+ patients. I truly wish you a good response to it.
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Sonya, I am trip neg with only liver mets and have done gemzar/carboplatin for almost 8 months. It has worked very well for me but is really knocking my platelets so I'm not sure how much longer it will be an effective option given further need to reduce and delay tx. I also wanted to mention to you the "ladies in their 30s" thread which is getting more activity lately. Oh, how I do understand your fears! I have three young children. I want to see them grown!!!!! Thinking of you.
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Ladies,
You are all so wonderful and supportive, thank you. I'm having a PET on Wednesday to make sure it hasn't spread anywhere else. I see my onc on Friday and we will go over the PET and my TM's, and my HER2 status. I am menstruating after having nothing since December 2014! I wonder if that is a sign that the Tamoxifen stopped working.
Sonya, I'm sorry about your TM's. They are elevated, but like these experienced ladies say, it doesn't mean the next treatment won't work.
Kaayborg, you are right. It's hard to try to manage someone else's stress. I think we are trying to stay away from the what if's and wait until after my appointment Friday to really discuss options and how we feel. I hate the holding pattern, it's so stressful.
Thinking of and praying for all of you,
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Sonya
My CA 27-29 was over 14000, yes that's three 0's!! When I started treatment, the next test they had halved and they continue to come down, although nowhere near 'normal', whatever that is. My onc is not worried about figures as long as they show a downward trend over time. But as Woody says we are all completely different in what these figures actually mean for us and how we respond to treatment. The uncertainty and unpredictability of life with stage 4 is trying to say the least.
Kaayborg I just had a six week break from gem/carbo and my platelets and WBCs completely recovered. I think it's good to give the immune system a chance to gain strength again for whatever we may have to face in the future. Although the LFTs rose a little in that time the tumours remained stable so I wouldn't be phased about taking regular breaks as long as it keeps working for me. The chemo remains in your system for a time anyway so will keep working. During the break I was able to have a fantastic family holiday, memories of which have really kept me going and elevated my spirits. It felt good to be off for the treatment treadmill and feel almost normal for once!!0 -
Hi Sony,
Since I was dx with liver mets I've been on 3 different drugs-the first Ibrance/Femara- which worked for about 7 dos, next a clinical study of GDC 0810 which really didn't work and I was on it for about 2 mos.I'm now on Xeloda which is working for me. As you'll see on here, different things work for different people and until you try a drug you won't know if it works, I wish it was simpler but unfortunately it's not. Hoping the Ibrance works for you for a long time!
Babs
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Isy, I learn something new every day. A six week break! If someone had asked me before hearing this from you, I would have surely thought being 6 weeks without treatment would do me in. This relaxes my worries quite a bit. So if my onc tomorrow goes with the two week break, I'll not sweat it.
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Sonya, I was on Femeara/Ibrance combo for 3 months and it worked in reducing the tumors in my liver but my enzymes continued to climb fast. AST and ALT were like 550 and 750. So I quit that combo and my numbers slowly went down. Then I switched to Faslodex 3 months ago. At first my numbers went up again for a week but now they have settled down finally. I get a little liver pain too, just little burning stabbing pains, nothing actually that I would even call pain just slightly unsettling. I get my first scan since starting Faslodex and will let you know how the scan goes. Praying it holds me for a very long time.....Of course you are scared! I think most of us are, maybe just in different degrees. I try to stay positive and not jump to conclusions because getting upset makes me feel worse and helps nothing. I admit that some days that is easier said than done. I hope and pray that Xeloda works for you for a very long time. Hang in there and keep coming back to let us know how you are doing. It is immensely helpful to read about other women going through the same CRAP-OLA!
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I have a question for you "experienced" ladies. My MO said my treatment may be as simple as switching from Tamoxifen to an aromatase inhibitor. Is that possible for it to be that simple?
How many of you have a port? I had mine removed as soon as possible and now I regret it, but I was very hopeful at the time.
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I say, sure, it is possible that it could be that simple. If it works, it works! I have a port. It was a necessity as I ran out of happy veins. I did not want it but it turned out to make treatments a breeze. On me, it is absolutely hideous as I am a scrawny chicken and every fine ridge of it protrudes. I call it my robotic mouse. Now the tail is like a thermometer for low platelets as it bruises my skin. Still, I should be beyond vanity at this point (SHOULD be). I am currently on a wild bathing suit hunt to cover it up but still, when I got it, I felt so close to death I swore I'd be so happy to show it off on the beach a year later so now I'm back to that I think. This is more than you need to know...ramble, ramble. All in all, ports are awesome!!!! I don't miss those IVs at all!
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Melani,, I am so sorry that your dance with NED is on pause for the moment. I hate when that happens. It is such a disappointment. I got a year of NED when I only had bone mets and when NED was done it was a punch in the gut!. I had a liver biopsy back in September when liver mets were first discovered. Still ER/PR+ and HER2-. Do you think I need another biopsy? Maybe I do because all of the liver and bone mets went away on Decembers Pet scan, but liver mets came back on February's liver MRI. Wonder if that means that the status has changed. I will talk to my dr about that.
My dr is saving IV chemo until we run through all of the oral ones. He wants me to have quality of life, so he is starting with the things most easily tolerated. I did chemo 4 1/2 years ago when I was first diagnosed and I had a really hard time with it.
I had a molecular study done on my liver biopsy. It showed that I have a genetic mutation which makes me become immune to hormone therapy after awhile. I had a good run on Arimdex(almost 2 years)...but since then I have failed everything rather quickly. He thinks that is why I became stage 4...because tomoxifen failed me after only being on it one year. I haven't had any other DNA testing done besides that and also to see if I was genetically positive, which I am not. What other DNA testing is there? I would love to have that done.
Thank you for all of the great info. I wish you the best of luck on your new treatment and I hope you dance with NED again very soon.
Woodylb, I know that while on Afinitor, I may have used the word NED too soon. I had only been on afinitor for 3 months at the time. I got overly excited when the radiologist brought my husband and I into a room and said, I see no evidence of disease in your bones and liver. It was amazing news, but as my markers continued to climb, I knew that my cancer was still looming and waiting for a place to land and I was right. It landed right back in my liver, and this time worse than the last time.
I have IDC...but I seem to remember my initial report saying that I have IDC with lobular features. I have no clue what that means.
Do you know how often you are suppose to get a liver biopsy? UGG, I would hate to go through that again.
Praying that Ibrance is working and the waiting is hard. Now knowing I have to wait a full 3 months to see if it is working means I won't know till the end of May.
Thank you for all of your good advice : )
Kaayborg, I am so happy to hear that your combo is working. I love to hear when things are actually working for people : ) I am sorry that it is knocking your platelets down. I had a friend who was on Abraxane/carboplatin and she had the same problem. She has a blood transfusion and she felt so much better after that.
I will check out the "ladies in their 30's" thread. I just turned the big 4 0...will I still be allowed..LOL!
It is so hard when you have young children. Mine aren't so young anymore ( 10 and 8) but me being sick is all my 8 year old knows of me. She was so young when I was diagnosed. Both of my kids have a really hard time with it. When I keep them informed about what is going on it seems to ease their fears. I have so much guilt for what they have seen me go through. No child should have to fear their mother dying. My 10 year old once said to me that she was afraid that she was going to come home from school and I was going to be dead. It broke my heart. I so badly want another 10 years so I can see them both off to college. I pray every day for a miracle. I know it is probably not in the cards for me, but still miracles happen every day.
I wish you luck on your journey. Thank you for chatting with me.
Luvmyfam, I pray that your PET shows that your cancer hasn't spread anywhere else! Hoping we all find treatments that give us years!
Isy, What treatment cut your CA 27-29 in half? I think I have seen you on the Ibrance thread, so I am hoping it was that. Having your CA 27-29 with three 0's is very scary. When I first saw mine, I thought it was a mistake! Praying to cut mine in half. Will find out soon enough.
You are right, the uncertainty and unpredictability can drive us NUTS! It is such a roller coaster. I would just love to be NED for awhile. I just want a bit of a break from this crazy roller coaster.
Babs, I am so glad that you are finally on something that works. I pray it works for you for a long time! : )
Xeloda is my next step when Ibrance fails me(I almost typed if instead of when) Guess they all fail us at some point. Just really hoping to find something that gives me a big break!
Artistatheart, I am sorry that you had to go off of your combo. Hopefully the Faslodex is doing its job for you! Praying your scan shows reduced tumors or none at all!
The liver pain is haunting. It is just a constant reminder that we are sick. I hate that, because I look totally normal so it is hard to grasp that I am actually really sick.
Thank you ladies so much for all of your advice and words of encouragement. The support here is amazing! I pray that we all find treatments that work for us and give us breaks off of this roller coaster once in a while.
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Hi Luvmyfarm,
Good to meet you!
I live on a farm too, though my landladies are the farmers and I'm their happy co-inhabitant.
You asked about switching from Tamoxifen to an AI and whether treatment could be that simple.
It can and often is for post-menopausal women, but you mentioned that you're menstruating again.
You may also be looking at Lupron injections or removal of your ovaries to end your periods and become post-menopausal.
Sometimes chemotherapy is given for aggressive hormone positive metastatic breast cancer to control it, then the patient is switched to anti-hormonals (typically AIs or Faslodex, sometimes in combination with ibrance or afinitor).
You're at the beginning of a new learning curve, so don't get too far ahead of yourself.
I used to describe mets as a marathon in contrast to earlier stage cancer as a sprint.
Now, I describe mets as an obstacle course that we're continuously developing new skills and strategies to master in our quest for quality and length of life.
May you be well as you enter this new stage, dear Luvmyfarm.
Sending a big hug from a California farm, Stephanie
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Kaayborg, I've also resisted getting a port - I think something at the back of my mind was not wanting to accept that this was a permanent situation, even though my head knows it is. However, after having all the nurses try to find a vein last week, even the queen of the canulas so called had trouble. In the end it had to go in my hand which is so painful! So I'm off to get my port put in next week. Was the procedure painful? I'm also a skinny Minnie so no doubt my mouse will be on show too. It will be good for getting treatments and scans. However because I get my blood tests done close to home by a different provider they are not allowed to touch the port as it is equipment belonging to a different company. Can you believe it?
Hope the bathing suit hunt was successful!0 -
Sonyarizzo, I was initially on Abraxane when my cancer markers went right down, however my tumours continued to grow alarmingly so you can see why some docs don't really take much notice of cancer markers. My onc didn't seem that bothered they were so high so neither was I, we were just happy to see them come down. I came off Abraxane because of this but also because it was causing me really bad neuropathy in my fingers. The doc said it was very unusual for it to come on so quickly and was worried it may become permanent so like your doc, he is most concerned with QOL so took me off it. The neuropathy went away as quickly as it started. Since then I've been on the gem/carbo combo which is working very well for me and I'm tolerating well. Don't worry too much If you do have to go back to IV chemo. i also had a really hard time first time round but find these stage 4 chemos a lot easier to tolerate and there are so many to try when one stops working. You still have a lot of weapons in your arsenal and the motivation of being there for your kids will keep you going!
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Isy, you are gonna love having a port with gem/carbo! Say good-bye to feeling even the slightest burn with whichever one of them burns...can't remember now. The procedure was not painful. I do remember being a little peeved that I could feel it under my skin and worried that it would always be that way but whatever I felt completely faded after a few days. I don't know it's there, except for if I look at it.
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kaayborg, I don't think we ever get beyond wanting to look good to ourselves and others. It just makes everything seem more normal and easier to mingle in the general public without being self conscious. Hunting for bathing suits is always difficult no matter what! Hope you had some good luck! Thanks Sonya! I too feel very well, so without the stupid liver twinge reminder I might otherwise stay in total denial. Welcome LuvmyFam! I hope you get a lot of good info and comforting words here! Isy, I can't believe that.....As if it isn't hard enough. Be well all!
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i have been having some achiness near my ribs, wondering if it's my liver or gallbladder. Dr says might be GB or muscular. That was 2 weeks ago. I get my treatment tomorrow and will ask him again. Last week enzymes were slightly elevated, he didn't seem worried. Don't they flucuate?
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Lvin,
I have also pain on my right rib , i have had it for a while it comes and goes but not major. I had an xray and nothing showed and not on scan. My onc think it is sclerotic since i had a spot there and it has healed. I also cough a lot due to smoking this could be my reason. Liver enzymes can fluctuate specially on some medication. If your doc does not seem worried neither should you. I hope it is nothing.
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Lvin, it is frustrating with in that area as it can be hard to know what it is from. And some fluctuations in counts is normal. I don't have any answers. It would be so much easier if we had a crystal ball into what is going on in our bodies!
I have posted on other strings this week that I had a recent, very fast, significant increase in my liver mets. Since my last scan (3 months), some spots that were micro sized or nonexistent have now converted into a 6cm tumor, among many others, in my right lobe, and my left lobe is now described as being comprised of nearly all metastatic tissue. My bone mets are fine and inactive and lymph nodes are NED. It is so scary and frustrating. I have been waiting all week to start Xeloda but administrative delays have the prescription still kicking around. I have been on the phone every day with various people from the doctor's office/insurance co/specialty pharmacy/second specialty pharmacy that processes the prior approvals for my oncologist. The whole process is such a joke. Now I am going out of town tomorrow. I am going to try to have the meds shipped to the hotel but don't know if that is realistic or wise (they are not available for pickup at a retail pharmacy). Anyway, despite being very scared and freaked out that my left lobe has been completely taken over by cancer in a short time span, the weird thing is that I feel great. No loss of appetite, no new fatigue/energy loss. I feel awesome and totally "healthy" . . . but like a ticking time bomb at the same time. I will feel much more at ease once I start the Xeloda.0 -
Jfl,
I understand your anguish right now, as I have been diagnosed with significant liver progression in both lobes. It is crazy how fast the tumors grow! Like you, I will be glad when I can get back on treatment. My oncologist won't make that decision, until the results of a liver biopsy are in.
I am holding all of us with liver mets up in healing light.
Best, Melanie
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JFL, i am sorry for your progression on the left lobe, it is scary when progression is so fast and frustrating when there are meds and because of bureaucracy and procedures they are delayed disregarding the patient's urgency. I hope you get to have Xeloda fast and hoping it will get you back on track. Glad you are feeling healthy and i hope you stay as healthy as you feel.
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JFL, that is so scary. I can't believe either how they can hold up meds that you need right now. I hope you get that Xeloda soon and it knocks those mets down quick! Like Woody said, I am glad you feel pretty well and hope that is a sign that things will settle down. I too get little stabbing pains in my right side and am feeling extremely anxious about scans next Thursday, especially when I read about people with rapid progression. Lvn, my enzymes have bounced all over the place mostly from Ibrance I believe which I had to stop.
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JFL, wow! All of that is just crazy...CRAZY! Makes me quite mad so I can only imagine how you feel. Those meds are gonna be at your hotel and Xeloda is gonna smash those tumors back to nothing again! Until then, peace to you. And, if it helps at all, I didn't notice a problem at all until I had 2 tumors 9 cm and 10 cm plus lots and lots of other smaller ones in both lobes. It's amazing what our bodies can handle and still feel so "healthy." So hoping you continue to feel well in spite of all the craziness inside.
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JFL. So sorry about your liver progression and I can't believe the insurance companies!! Do you think getting your MOs office involved would help? That's what I had to do to get my Ibrance. I hope you get your Xeloda soon and that it works for you as it has for me. So happy you're feeling well despite everything!!! Enjoy your trip!!
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Hi all!
i am new to this discussion and scared to death, was diagnosed 1 month ago with stage 4 TNBC with lungs, liver and bone mets after 2 years of being cancer free. i was 26 when diagnosed first with stage 2A TNBC and now a week before my 29th birthday with mets. i had not symptoms at all except for a chest infection that went away after antibiotics. i am so scared and thinking that my days are numbered. need help.
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MaryK,
I am so sorry for your cancer coming back , soecially when you are so young and your life is still ahead of you. We are all never prepared for this knd of news and it is very scary . I cannot tell you not to be scared because it is unrealistic, but i will tell not to lose hope and have faith in your doctors and in yourself. I know you are triple negative and this may seem hopless to you, but actually triple negative respond well to chemotherapy and some respond completely. I hope your doctors found the right combination for you this time and if not there are still a lot of other options. You have no lymph nodes envolvement and this is a plus. We are here for you to support you whenever you need it. I hope soon you will scan and get good results. My prayers are with you and i send you a message of hope and healing energy. Please keep us posted.
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Mary, welcome. I hope you find support here! You are just so young. It is straight WRONG that you have this disease. I am at the YSC conference right now which is for young women dealing with breast cancer.
Thanks for the support and responses regarding my insurance hassles. I finally got some Xeloda this morning. My doctor called in a supply for 4 days that I paid for out of pocket outside of insurance.It was a crazy morning - had to pick it up 1.5 hours before my flight left (when pharmacy opened) and it can take 30 minutes or more to get to airport from the pharmacy in rush hour. Fortunately, it all worked out and I made my flight. Unfortunately, I had to pay $347 for the pills (which was some discounted rate because the invoice I had to sign with the pills said the cost was over $900). But, given the circumstances with my fast and furious cancer, my gut said it was the best thing to do. I have a sweet, happy little baby boy that needs me to be around as long as possible.
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MaryK...this is so very wrong. I hate that you have to be here. I feel so young at 38 and can't imagine subtracting an entire decade from this diagnosis. I really like what WoodyB said. Not being scared IS unrealistic, but I have learned that hope is a choice and you can choose it in the midst of your fear, and given the options, well, to me it's the only choice. I think it's quite good to go ahead and grieve because this diagnosis calls for it and somewhat ironically, I found it helped me go on living. Also, please check out the triple negative thread...lots of ladies who know its reality but are full of hope. Also, encouraging examples of people living long and well with metastatic tnbc. I also check in with the ladies in their 30s thread and you're welcome there too of course. It's really just a we're too young! thread. (And please read no disrespect to you lovely older but not at all old ladies. No one is ever an acceptable age for this!)
JFL, way to go making sure you got those meds. So glad for you!
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JFL,
I am happy you got your pills after so much hassle but sorry you had to pay for it yourself. I hope they work fast and get you back on track and give you all the time you need with your little boy. Wishing you great response on Xeloda.
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Mary
Welcome and Im sorry you're here. You'll find the women here a wonderful group for support and knowledge. I pray your doctors find the treatment that works for you!
JFK. So glad you got the Xeloda even if you had to pay and so hoping it works for you!!!!
Babs
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