Hi everyone! This is my first post with a question about myself, although I’ve posted responses to others. I am 49 years old and I was diagnosed with MBC de novo on 8/31/17 (bone mets). I am also BRCA2 positive. My cancer is ER+ HER2- . I’ve had a double mastectomy and a complete hysterectomy, including my ovaries. My first treatment was Ibrance and Letrozole, which I had great success with and no side effects. I was NED for almost two years.
Last July, I had spots show up on my liver. Talk about the wind leaving my sails! 😢 I was put on Afinitor and monthly Faslodex injections, and my mets were biopsied. No mutations and no changes to my cancer...just a recurrence. I had no side effects...but my mets did not respond to treatment after 6 mos. On 12/31/19, I started Talzenna. This is a treatment for those with BRCA1/2 mutations. I’d heard wonderful things, and was so very positive about this being my next long-term treatment. By February, my mets were shrinking and by April they were just a fraction of what they were (largest spot went from 2.5 cm down to 6 mm).
Yesterday, 8/21, I had my 3 mos follow-up. My appt with my doctor isn’t until Monday; but the results of my liver MRI were posted to my health portal this morning. Stupidly, thinking they had to be good, I went ahead and looked at them. I have two new spots that are 1.5 cm and my 6 mm spot is back up to 9 mm. My bone mets continue to be stable. I feel like I’ve been kicked in the stomach. My labs and liver function tests have been normal, and were normal again just this past Monday. Now this. I only got 8 mos out of the Talzenna.
So, I’m evaluating options before I see my doctor on Monday morning. I’ve not been on IV chemo yet, and it just scares me to death. Before taking Talzenna, my doctor mentioned Taxol and Xeloda. She seemed to favor Taxol, but said that Xeloda could be a good alternative to IV chemo.
Is there anyone else who hasn’t had traditional IV chemo who has had success with Xeloda? My doctor has wanted to save the “big guns” of IV chemo until we really needed them...and to have her mention it now scares me.
Last July when the liver mets first showed up, I sought a second opinion at Wash U (Barnes) hospital in St. Louis, so all of my tests and biopsies are sent there. I will probably ask for a biopsy of these new spots to see if there is any mutation this time. It might open a door to more treatment options.
Any thoughts and advice are appreciated!
Thank you,
Amy
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Hi Amy, I’m sorry you have to deal with the shock of seeing your report before getting any advice from your consultant about proposed treatments. I’m afraid I can’t help with any specific advice. I was diagnosed with MBC in January. My only thoughts are to try to keep positive. If you do have to have IV chemo it might not be as bad as you think. Everyone is different. Also you don’t have to agree to anything straight away. Take note of the advice and then maybe take a day or two to do some research and come back on here for a chat? Mostly I wanted to say I hope this weekend isn’t too awful for you and wish you all the best for Monday.
Thank you, I appreciate that. I have a feeling that my doctor isn’t going to be very pleased that those results were posted.
The year 2020 has just been awful, and I know that it’s been rough for you reviving your diagnosis in January. What has been your initial course of treatment? I hope you are feeling well. I’ve learned that feeling well is a big blessing and half the battle.
My oncologist initially switched me from anastrozole that I had been on for primary breast cancer to letrozole. My cancer is ER 7/8, PR 0/8, HER2 negative. I’m 51. After a scan showing stable bone mets but an increase in number and size of lung mets I started ibrance and faslodex at the beginning of this month and am feeling fine on it at the moment. I am incredibly grateful for this.
I’m also very pleased to have found such a lovely group of people in this forum and really value the hive mind. I hope you find some useful information. Please let us know how you get on.
I have been on Ibrance / Letrozole for past 34 months and petscan results a week ago showed progression on both sides of my iliac bone. So, like you, I will be moving on to a new treatment protocol.
I was struck by your hesitation to see your results prior to your oncologist. When my oncologist told me about my results last week (prior to my receiving them online) it was like a gut punch. I strongly feel that getting the results before the follow up with the oncologist gives you the chance to digest the news and make a list of questions. When she told me in her office, I was so shocked that I felt unable to think. She then proceeded to ask me about whether I wanted to proceed with standard protocol vs a Plan I/II phase research study. Keep in mind that my scan showed two spots that lit up; that did not seem (to me) to be an aggressive progression so it surprised me that she would be bringing up a trial.
I have no experience with either Taxol or Xeloda but you will be in my heart and prayers as you move forward with further treatment. God bless you!
Are you taking Xgeva? I had new bone mets and they are keeping me on Letrozole/Ibrance and added Xgeva. I am also have a short round of radiation on my hip.
Yes, I started out with monthly injections at time of diagnosis; and then oncologist reduced to every three months to avoid bones getting too brittle. I'm going to ask about getting radiation to both iliac spots when I see her this week.
Hi Amy. It is so disappointing when our meds stop working!!! I am.sorry you and all of us are going thru this. I was dx on Oct.2017. Er and Pr + and her2 -. About 4 months ago progression was noted. Liver and bones. I have exhausted hormone inhibitors. Now I am on xeloda. It is the only oral chemo for me I am told. The other option or next regime would most likely be taxol. The benefit of the xeloda is you dont have to go to the hospital weekly or have iv infusions. I still work full time and weekly infusions qould alter my lifestyle greatly. I will know next week if xeloda is working for me as I am having bloodwork on Monday and it is the end of my 4th cycle. I have had some side effects - could be worse so I won't complain. Feel free to PM me if you have more questions. Do keep us updated on what you decide. Wishing you the best.
Thank you, Faith. Yes, I’m very discouraged. I know I was very fortunate to have such good luck early on. I think I was spoiled into thinking I’d beat it. Silly me!
Not having to go in for infusions during this COVID-19 pandemic would have its benefits. I work full-time from home, and work for a very caring and understanding company, so I am fortunate in that regard.
Hopefully, you will get a positive result from your labs and your side effects will continue to be minimal. I will let you know what I find out from my doctor on Monday.
Not silly you. Just hopeful and positive and that is a good attitude, right? I awent in a funk learning I had to go on chemo. It is scarey! Yich. But I have learned from the ladies on this site is there are different chemos out there. It isnt just one strong nasty one like we grew up hearing about. This is a rough journey we are on. We will have ups and downs especially when we don't hear what we want to. Try to stay strong and know there are still options for you and more are coming down the pipeline. Dont waste your days worrying every minute. You can live years with this. Focus on how you feel at this moment. Of course it is easier to say this then do it, but try for your sake. Your oncologist will have a plan for you. By the way, I have a client on taxol for 2 years and NEAD. She did xeloda for 7 months and then had to switch. For her taxol has been easy! You will find the right direction to be on soon enough! Do keep us posted.
I’m looking into getting a chemo cold cap so that I can keep my hair. I just want to be able to look in the mirror and still see me. Knowing that there is a way that I can do that has helped me deal with this new treatment plan a little better.
Yea. I understand. By the way, most people do not lose hair with xeloda. I understand the cold caps are a bit of work - getting it on etc. You have to do what makes you feel best. What state are you in? I am in New Jersey. Faith
I'm very sorry about the scan results. While it seems they did increase, doesn't look like a huge increase though. I'd definitely research Xeloda. I've heard there are some side effects to be aware of. I've been on taxol and had success, but did stop and change to Taxotere after neuropathy was progressing to uncomfortable levels. I'm also Stage IV, but TNBC with liver and bone mets, but stable. You might ask about immunotherapy options. I've been on that for 18 months. Have you had a foundation one report or cell free DNA testing done to see what genetic mutations other than BRCA you may have? Those were helpful to my medical team and treatment decisions. You may also want to consider a second opinion as well, just to have more information. I wish you all the best. Keep breathing. Feel free to PM me for individual chats if you want. I'm happy to dialogue. Lynn
Hi, Lynn. So far, the mutation found in testing both with liquid biopsy and traditional biopsy is an estrogen mutation. No TNBC that would lend itself to treatment with immunotherapy. There are clinical trials going on for immunotherapy for ER+ breast cancer, but no immunotherapy available that is FDA approved yet. I’m hoping that is an option soon.
Sounds like you're on top of it. You don't want TNBC too! My onc. got compassionate use for immunotherapy before it was approved for it, so I'm on the one used primarily for lung cancer. It works though so far.
I did pretty well on taxotere. I continued to use cold caps for my hair, otherwise I would have lost it. I did lose body hair. I had some neuropathy in my feet, but it was manageable and I take Alpha Lipoic Acid and B6 (at nurse's recommendation) for it. I was on taxotere and Keytruda. Mets became stable and I stopped taxotere and was just on Keytruda for several months. I seem to always get nausea, so that's problematic. As long as they give you the pre-meds, taxotere was very manageable for me. Premeds like bendryl and steroids and anti nausea meds.
So sorry to hear this and can't offer any advice. I'm about to have scans after first four months on letrozole and Ibrance. They noted liver spots but said they were too small to identify so I'm keeping fingers crossed.
But re IV chemo, I had monthly sessions 26 years ago when it would have been more primitive. The effects built up each months and I felt pretty sick after 6 months, but otherwise I kept going at work with odd days off and didn't lose my hair. So I'm sure everyone reacts differently . I've had no side effects from my current meds but I note others have.
I thought getting results by phone was bad enough but to see them on the screen must have been a bit grim.
Good luck, Carolyn x
Hi Amy
What a shocker - to see your results like that. I can’t imagine how you felt. It sounds like you have been very positive throughout this journey, and I’m sure you will continue to do so. I know there are a number of others on the treatments available to you, and I’m sure they will reply to you.
I’m sorry I have no advice as I am on Ibrance and Letrozole, but I just wanted you to know that you sound awesome and I am sure you will do well on your next line of treatment.
I have had taxol and Xeloda and would choose taxol every time. Xeloda seems to cause some people no bother but I suffered so badly with runny tummy and then constipation I could never go far for want of a toilet. I also slept such a lot day and night. In other words the foot problem was the least of my worries. Everyone is different. Please do not be afraid of IV infusions. Good luck. Having a three month chemo break and am just on Denosumab and Fulvestrant. Feel like a normal person.scans at end of Sept to see which chemo is for me. Wishing you well,
Hi there, I was on taxol every week for 19:weeks (max is 21 weeks). To be honest I don’t remember side effects until the last week when I felt worn out all of a sudden. Everyone is different but I would choose taxol over Xeloda every time but then I am lucky to have a nurse who came to give me taxol at home. I didn’t realise this was possible until week ten. The hours at the hospital were not fun. Wishing you all the best xx
Hi Amy, my situation is somewhat similar to yours. I am BRCA2 positive and have been on Xeloda for 5 months. It wasn’t too hard except my feet started bleeding recently from hand and foot syndrome. My liver and bone mets are ER+, but I had skin mets that were triple neg, so we added Keytruda immunotherapy which totally got rid of those. Neither really worked for my ER+ mets and I now have fluid in my lungs so I moved to Carboplatin IV chemo yesterday which is for ovarian cancer and BRCA patients. After a day, I feel a lot better. I wouldn’t resist IV chemo. It is just a way to deliver the medicine differently than pills. Prior to Xeloda, I was on Lynparza pills and those worked for 9 months with few side effects. They are a PARP inhibitor for BRCA. Is that an option for you? I would go there first before chemo. At this point, there are no definitive answers. I think choosing a new treatment becomes an art rather than a science. A second opinion is good. You still have lots of options. Best of luck to you. By the way, my real name is Amy, too, and I’m 55.
Hi, Amy. I am on a PARP inhibitor now (Talzenna). I had high hopes for it because of it being specialized for BRCA. I’ve had both liquid and traditional biopsies and the only mutation I have is an estrogen mutation, but no others. I’m going to see if my oncologist would want to repeat a biopsy on these new spots to see if there are any changes.
It sounds vein, but I’m the most worried about losing my hair. It’s really not vanity, but rather the idea of looking and feeling like I have cancer. So far, throughout all of my treatments the last 3 years, I’ve never felt sick I’ve never been looked at as a cancer patient. That has helped me greatly mentally.
Thankfully, I’m working from home due to COVID, so I won’t have to worry about not going in to work. Whatever treatment I choose, I will be able to be at home for any of the side effects
I haven’t had any side effects on any treatment so far. I pray that continues.
Thank you for reaching out sounds like we’re sisters in this battle ❤️
I feel the same way about the hair. You don’t lose hair on Xeloda or Carboplatin, but you will on Taxol. I have a good wig from the last time I was on Taxol and I don’t think anyone noticed. Of course your eyebrows and eyelashes fall out, so that complicates things. Sounds like Xeloda is a good option. I know someone who has been on it for five years without progression! So, there is always hope.
I had a form of IV Taxol chemo for 3 months at the start of this year. My oncologist thought it was the best option but I really fought against it as I’d had IV chemo following my initial breast cancer diagnosis and it had to be stopped as it nearly killed me. This time was completely different, so much easier. Yes there were side effects but nothing I couldn’t manage. If it were offered To me again I’d accept it.
I was on a trial of cabazitaxel which is licensed in the U.K. for prostate cancer. It’s given every 3 weeks instead of weekly.
I had the usual side effects but they were mild. I continued to work full time throughout and didn’t need to take any sick leave.
The side effects were mild nausea, loss of appetite, sore mouth, fatigue, dry eyes, skin and nails. I didn’t lose my hair, my sense of smell improved and the most unpleasant side effect was the taste in my mouth. Of course everyone reacts differently but when I had TAC chemo 4 years ago I had an awful time and became really poorly.
Unfortunately the 3 month scan showed progression and because it was a trial it was stopped immediately. I wonder if it was given enough time to work.
I then had 3 months of Xeloda and that wasn’t too bad. Though I enjoy walking and developed deep blisters on the soles of my feet - my own fault for ignoring the advice I’d been given. Both hands and feet were very red. It seems that both these drugs are usually very successful for liver mets 🙂
Hi Amy, I have no knowledge of the things you asked about, but I just wanted to encourage you. I did have Taxol with my initial diagnosis in 2009 and was in remission for 10 years. My cancer is ER+. I hate you had to find out that way. I know it’s hard, but God is able to do exceedingly, abundantly above all we can ask or think. Hang in there.
Xeloda is totally the way to go!! Works great on the liver. Plus you keep your hair!!! Why do IV if there is an oral that works- I was on xeloda for over 3 years!
Thank you, I’ve heard that helps. One post said she slathered her feet with Udder Cream and wrapped her feet in plastic wrap before putting socks on a bed time.
I would like to still be able to take walks from time to time, since going to the gym isn’t an option with COVID.
I had IV chemo (docetaxol) when Ibrance ceased to work for me, and it wasn’t too bad, except for mouth sores, and that kind of bubbly chemistry experiment feeling in your stomach that chemo can bring. But I was able to live pretty normally, fly to Seattle to visit friends, do a road trip after Christmas...and it really worked on my Mets. So it wasn’t awful....I am retired, and that does admittedly make things easier....but I was able to work when I was first diagnosed 20 years ago throughout a 6 month IV chemo treatment....this is just to reassure you if you do need IV chemo. Good luck!
Then I did tamoxifen/ herceptin, (The tamoxifen worked on some of the liver Mets, but did nothing for my nodes)then it was decided that I am in fact HER2NEU-, so now I’m just starting Afinitor and Faslodex. I’m just coming up on my second anniversary of MBC diagnosis....
Thank you. I'm on Afinitor and letrozole now.....almost 60 days. No scan yet. Several liver lesions. Xeloda will be next. Afinitor isnt too bad. Rash, swelling and fatigue but all manageable. Best of luck
I can relate to your thought about being spoiled into thinking you can beat it. Since my initial diagnosis in 2013, I've had some decent results with the hormone therapies. With each treatment, I've had the same thought - this treatment may actually last for the long run. Then, progression happens, and reality sets in. Thankfully, we have options.
About Xeloda vs. Taxol - I have experience with Xeloda, have not done Taxol. When my cancer (ER+, HER2-) spread to my liver while on Ibrance/Faslodex, I started Xeloda. My oncologist did not present Taxol as an option.
I've been on Xeloda since February 2019. Liver lesions have resolved and other nodules have remained stable in lungs, lymph nodes, and bones. One odd thing while on Xeloda - I developed a mass in my healthy breast, which turned out to be HER2+. My oncologist added Herceptin to my treatment for the HER2+. My side effects have been mild - just the hand/foot syndrome, which I have found ways to manage. For me, Xeloda has been one of the easier treatments, but everyone responds differently, as you know.
I wish you well with making the decision that is right for you.
I've been on both Xeloda (7 mo) and now Abraxane for 7 months, which is the same type of chemo as Taxol but doesn't require premedication or solvents. I have extensive bone and liver mets. The Xeloda really backed off my CA15-3 marker for several months, but then it started going up gradually. I wasn't too concerned but got an end of year CT scan anyway and was shocked at the progression in my liver. I do think it worked well for a while, but I suggest regular scans to stay on top of the liver mets. I'm still on Abraxane and similar story....dropping CA15-3 and better liver labs for several months, but since last month the marker has been going up again so I'll get a CT in a week.
There seems to be a wide range of dosing with Xeloda, somewhat based on BMI and also on side effects. The nice thing is you can quickly reduce dose if you need to. I found it easy to be on and didn't have many side effects as long as I kept my feet cool. I took some supplements to help too. If you do choose Xeloda, put it in the search engine here, there is a lot of good advice about keeping your hands and feet happy.
My oncologist originally suggested Taxol but I'm allergy to castor oil, the solvent, so we opted for Abraxane. It too has been pretty easy to take. I did lose my hair and my nails are weird, but no nausea, just mild fatigue and an occasional low fever for a few days after the IV. And it's a quick IV that can be done in a vein, I didn't need a port. Again, lots of good advice here if you search for Taxol or Abraxane.
If you are on Facebook, there is a group called "MBC Patients Living with Liver Mets"...lots of helpful info there too.
I wish you clarity and peace as you make this next treatment decision.
I have been unfortunately on several different treatments which included xeloda and then taxol. I felt pretty good on the xeloda except for the hand and foot issues. I got about 6-7 months out of that. I am now on taxol and have been since December. It’s not terrible but I don’t feel great. And of course you lose your hair and as vain as this might sound I’m over this peach fuzz $#!t on my head. I have scans coming up this next week so we’ll see how things look. We might change to something else. Wish I could find something more long term. Good luck and keep us posted.
I am so sorry you have to go through so many health challenges, but I pray for the right combination of drugs that will bring healing to your body. Challenges , either break you, or cause you to grow in strength. Sister, and yesssssss Warrior You Are Getting Stronger ! ! ! XoXoXo
Which treatments did you go with? If you did taxol what where your side effects? Like you IV Chemo scares me but looks like that’s my next treatment plan
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Lynn
you have to go through so many health challenges, but I pray for the right combination of drugs that will bring healing to your body. 
To port or not to port
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