Hi wonderful people,
I am on me second round of Xeloda after the disease progressed to new bones and liver. It’s my fifth line of treatment over two years. I was diagnosed with MBC in 2019. My MO said that if Xeloda helps to control the disease it might be possible to go back on target and hormonal treatment. I wonder if anyone did this. I appreciate your experience.
Best,
Marina
Hi Marina,
After Xeloda ( which didn’t work for me) my oncologist recommended Tamoxifen and Verzenio. I’ve been taking it for two months and my most recent scans were stable.
Best,
Jade
Hi Jade,Thank you for your reply.
Have you ever been on Verzanio or any other meds from this group before. I was on Ibrance and exemestane for one year, then ibrance and Faslodex, then Piqray and tamoxifen for a short time. I got bad side effects from Piqray. Finally, on tamoxifen along for a few months prior to Xeloda but it did not work and it spread to liver in addition to the wide spread bones. This is why the doctor recommended me Xeloda.
Best,
Marina
Hi Marina,
Where do you go for treatment? Have you had a biopsy of your liver? Have you considered a clinical trial?
Here are the list of meds I’ve been on:
Letrozole and Ibrance (2 years, I developed an ESR1 mutation so this stopped working)
Faslodex (6 months, developed liver mets)
Clinical Trial Drug ( 4 months, this worked well but developed pneumonitis so I had to stop the trial)
Xeloda (3 months, did not work)
Currently on Tamoxifen and Verzenio (most recent scan show liver mets shrinking).
Best,
Jade
Thank you Jade for your reply. I am going to the University of Miami. The liver met showed recently. Thus, my oncologist does not consider a biopsy yet. I was taking a biopsy a long time ago from the bone. I heard about a very good clinical trial for your mutation. We have a group on Facebook. It’s called ErSO activism for breast cancer. I posted lots of stuff about ErSO on this forum. I hope it will be a cure. The lady there shared about a clinical trial for that mutation The drug is ARX788. When I did search it said that it’s for her2 positive but I am negative. She said that she only got one treatment but people share favorable results. I did not try any trial yet. Waiting for ErSO to go to human trials. It’s interesting because Verzanio is the same group as ibrance but my doctor mentioned Verzanio as well. Do you have any side effects from it?Best,
Marina
Apparently, fairly significant diarrhea is common for the first week or two.
Hi Jade. Thank you very much fir sharing. How are you doing on Verzanio? What trial were you on?Thanks
Marina
Hi Marina,
The first week I had diarrhea (Verzenio) but now I don’t have any side effects. The clinical trial I was on was called Ember and the drug was a SERD.
Best,
Jade
Thank you Jade. I am very tired on Xeloda but I hope it works. Hope Verzanio will work for you as well. Almost all drugs that are on trials now are serds. The only one that is on preclinical trial ErSO has a novel mechanism and proved to be a cure on mice. It gives me a lot of hope. We have a group on Facebook that is called ErSO activism for breast cancer. We have people there from all over the world. We are trying to write Bayer that licensed this compound to speed up clinical trials. Best,
Marina
Hi Marina,
I vomited often and felt nauseous on Xeloda. I do get tired with Verzenio but it is more manageable than Ibrance.
ErSO sounds very promising and I am part of the Facebook group.
There are a number of clinical trials that I'm interested in when Verzenio stops working.
Best,
Jade
Thanks for your reply. I hope Verzanio will work for you for a long time until ErSO comes around Best
Marina
How did you do on SERD. Is it IV or oral ?
Hi,
It was a SERD (4 pills daily)) and I felt great! I was really disappointed when I had to stop the trial.
Best,
Jade
I did not understand your question. You were on Xeloda. Aren’t you?
Kelly. I got it. Your question was not addressed to me. It was just in my thread. This is why it was emailed to me. Thank you Hope your Mayo appointment will go well. Keep us posted Good luckMarina
Hi Jade,I am still on Xeloda but I have not had any scan yet. It’s next week. How are you doing on Verzanio and tamoxifen. I was on tamoxifen only before Xeloda and developed liver mets in addition to bones. How are you doing and how are you tolerating it. Thank you for sharing. I cope for a curative treatment. I follow a lot of research and hope for cure. I hate when a medication stops working. Thank you so much for sharing.
Best?
Marina
Hi Marina,I am still on Tamoxifen and Verzenio. My last scan was stable and my most recent blood work was great. I have an MRI scheduled next month, so I will let you know how things go. Overall I feel really good but I occasionally feel nauseous.
So glad to hear Xeloda is working for you!
xo Jade
Did you have a liver biopsy you mentioned in your previous posts. My oncologist prefers not to do it She prefers systemic treatment
After, Xeloda failed I had a liver biopsy just to make sure my cancer hadn’t changed.
Thank you Jade for sharing. I am glad it works for you. I am not sure if Xeloda works. I hope so. I have not had any scan yet due to heart issues. I had a pacemaker. I was off Xeloda for 2.5 weeks and markers went up. I am supposed to have a scan next week and I am very nervous. I hope Xeloda works but My oncologist mentioned Verzanio despite the fact that I was already taking ibrance 2 years ago as my first line of treatment. I noticed that you did too. This is if Xeloda fails but I hope not. Best,
Marina
Sorry to hear about your heart issues. Hope your scan is stable! How are you feeling on Xeloda? I was on Letrozole and Ibrance for almost two years until I developed an ESR1 mutation. Hoping Tamoxifen and Verzenio work for awhile. xo
Hello Marina My cousin had Xeloda for a few weeks but had to stop it because it gave her heart issues. After she had Afinitor with Faslodex.
Have a nice weekend
Helen
Hi Helen, Thank you very much.
How is she doing on Afinitor. This is the only drug that I have not got on. I was on Faslodex with ibrance after ibrance and exemestane. Then Piqray with Faslodex but Piqray gave me a bad allergy. Then I was on tamoxifen and finally Xeloda.
I wanted to ask for Afinitor but my doctor said that Xeloda should work on liver. I hit a progression to liver in addition to widespread bones. I hope it will work.
Thanks and have a nice weekend!!!
Best,
Marina
Hello Marina So she was on afinitor and Faslodex for almost 18 months and then had progression to her liver. Now she is in clinical trial (she is in France and goes to one of the best cancer institute in the world Institut Gustave Roussy). Her new treatment is an IV chemo. It is tough but it’s working. Hopefully your liver enzymes will stabilize and you will be able to stay on Xeloda.
Helen
Hi Helen, Thank you very much for your encouragement. I am very tired on Xeloda but hope it works. Are you on Xeloda as well?
Hope ErSO will come out soon. We have a new group on Facebook. ErSO activism for breast cancer. There are people there from the whole world. We try to approach Bayer to speed up the human trials.
Best,
Marina
Hi Helen. Can you tell me what heart issues your cousin had on Xeloda. I am on it for three months and also got heart issues recently. I do not know if this is Xeloda or a Moderna booster. I also had a dental procedure with the local anesthesia and antibiotics after. I started experiencing SOB and low heart rate, my ekg was abnormal. Thank you
Best,
Marina
Hello Marina I am not sure, I think she had arrhythmia. I will ask her. We have not been in contact this last week as she got covid and last time she wrote me told me she was not well at all. I am sorry you are having issues with Xeloda. What is your dosage ? I am on 1500mg a day, one week on and one week off. As soon as he hear from Allison I will let you know. Take care Helen
Thank you so much Helen for your reply. I have serious heart issues but doctors do not know if it’s from Xeloda. My dosage is 1500 mg two weeks on, one week off but now I am off the second week because of heart issues. Best wishes to you and your cousin.
Marina
I have stage 4 MBC estrogen positive with Mets to bones and liver. I did very well on Ibrance and Falsodex for 11 months until it stopped working, then Piqray for 10 days until in the ER with anaphylactic shock, then on Xeloda for 5 months until it stopped working. Actually not sure it ever worked very well While on it one of my 2 cancer antigens went up each month and my liver cancer lesions have grown or spread. I have an appointment with the Mayo Clinic in Jacksonville, FL. November 1st for a second opinion. Pray I can get some good info to share. My oncologist wants me to an IV Gemzar when I return on November 9th. Is there anyone that can share their experience with Gemzar?
Hi Kelly,I hope you will get some answer in Mayo Clinic’. You did not try Verzanio and Afinitor yet. I just talked to the lady who went on Verzanio after Xeloda and is doing well. Check this thread. Her screen name name is wintervt
Good luck in Mayo. Keep me posted.
Marina
No my Dr said Verinzo was too much like Ibrance and there are no more oral drugs suitable for my Estrogen positive MBC. That’s partly why I’d like a second opinion.
Yes. Now there is a study that you can repeat the drugs from the same group after a break. Afinitor is not even from that group. Let me know how your Mayo appointment went. Good luck!!!Marina
Thanks, another good question for Mayo on November 1st
Yes. It’s a very good question. I mentioned yo you in my previous reply that the lady in this thread said that she is on verzanio now after Xeloda and doing well on it. She was on ibrance a long time ago. I know another lady who is being treated in a large cc in NY for seven years and they also repeat the drugs from the same group. She was on Ibrance 3 Years ago then on some others such as Afinitor, tamoxifen. Now she is on Verzanio as well. It’s the same group as Ibrance. She has not been on chemo yet. I mean Xeloda and drip in. Please keep me posted.
Best,
Marina
Hi Kelly,How was your appointment in Mayo Clinic? What did they recommend to you?
Thanks,
Marina
The oncologist I saw ther is Dr Advani. I really liked her a lot! I loved the entire facility. There are so nice and so organized. I would consider staying in Jacksonville and seeing this DR. THE CARE IN THESE places are night and day from Virginia Beach. She recommended the same chemo as my Dr here in Virginia Beach Gemzar. The Mayo Dr recommended the less aggressive chemo drug. My Dr in Virginia Beach told me she wanted to take the more aggressive drug first bc she said”when I get sicker down the road, then I can handle the more gentle drug last. . I don’t plan on getting sicker. I plan on getting better. My local oncologist now wants to add the chemo drug to Carboplatin. The MBC is in my bones, the Mets to my liver are enlarging and the cancer has now thickened the walls of my stomach giving me digestive issues and pain. I also seem to have a nice size gastric ulcer. It was definitely worth the visit to Mayo. She really explained things well.
Hi Kelly,Thank you for sharing your experience. I read on Facebook (ErSO activism for breast cancer group) the experience of the young lady who had a very large liver tumor, was put on taxol for seven months. She shared that now she has NED. I believe taxol might be the next one after Gemzar. Good luck to you!
We all hope and pray for ErSO that may change the game.
Best,
Marina
If you do well on ibrance, I was told that verzenio is an option.
Thank you for your reply. Ibrance worked for me for a little longer than a year until progression I am on my fifth line of treatment which is xeloda, a chemo pill. My doctor said if xeloda stops the progression there is a possibility to go back on target and hormonal therapy. I asked people if anyone experienced that move. Best, Marina
Kelly,Another suggestion. If you would like peoples experience with gemzar, post it as a separate question. Your question in this thread would not be see because you posted it as a comment on my question not as a separate question. It’s just a suggestion.
Best?
Marina
Hi Marina, I was on all the same drugs as you except piqray. I don't have the mutation for that one. I was told by my onc that typically if you go off a drug because it has stopped working insurance will not pay for you to go back on it because it stopped working in the past. She also said that there is not enough research on whether a past drug will be effective again. I would be happy to go back on a hormone inhibitor again if I was allowed. If we stop a drug to go on a trial insurance will cover it when we resume it. I was on Xeloda for about 7 months. It was my first chemo. It is important to drink alot of water with this, as well as other chemos as they are sooooo drying. It will also help your GI system. I had stopped eating yogurt, but resumed eating it when I was taking Xeloda. I felt like it coated my stomach and prevented me from having stomach issues. Xeloda can be very hard on our systems because it is going thru our digestive track versus IV going thru veins. Drinking alot of water can help with the fatigue also. Dehydration will make us sleepy.
Thank you for mentioning the Erso group on FB. I am so curious about this drug. It also gives me hope. A NY onc said it will probably take five years to get into mainstream. Fingers crossed it is sooner, or something even better. Beat of luck. Faith
Hi Faith,Thank you for all your suggestions. I know the lady She is getting treated in NY. She was on Ibrance but in some years she is on Verzanio. The insurance covers it. I do have fatigue and low energy.
In regards to ErSO, I believe it will go out sooner if it shows good results on humans. The times are changed now and FDA approves drugs under compassionate and accelerated approval. It means that for people who couldn’t get into trial May get the drug when the dose is established (compassionate) and after phase 2 if the drug shows good performance it can be approved (accelerated). We just have to hope that it does. What treatment are you on now? How are you doing?
Best
Marina
I am currently on Abraxane. Tomorrow is my 14th treatment. I get it weekly. Seems to be shrinking things and other then feeling tired more than I used too and dry skin I am managing well. I know it could be alot worse. I believe this is my 7th drug in 4 years.
I was on Xeloda for a year and a half to stabilize the MBC. I was very sick and she wanted to get me stabilized and feeling better. Then after a year and a half she put me on Ibrance and Letrozole and I have done well. I have been on these drugs now for 1 year and 10 months and the MBC has been stable.
Hi,Thank you very much for your reply. It’s very in our aging. Were you on the same drugs before Xeloda? I am glad that Xeloda helped you and now the Ibrance and letrozole is helping you as well. Where are your Mets? When were you diagnosed?
Thanks again
Best,
Marina
I was started on Xeloda at the beginning of my MBC in 2018 and then taken off of it after 1 year and 7 months and put onto Ibrance and Letrozole. The Xeloda was still working but because they had stabilized the cancer they felt it was worth putting me on Ibrance to see how I would do. They said that xeloda was a stronger more toxic drug and it was time to see if the less strong drug would work. It has worked well so far. The oncologist said that they could have put me on Ibrance from the get go but it would have taken a very long time to get me feeling better again. I was very sick and could not breathe well. The xeloda was to get me feeling good again, and as it was it took about 8 months. My mets were in the lung and in the ribs. They remain in those spots and have not spread elsewhere.
Hi Ruby,Thank you for sharing. I am glad that the meds. worked so good on you. I have a different story. I have changed 5 lines of treatment over 2 years and got new spreads. It’s such horrible disease. You never know what to expect. I hope Xeloda will work. It is very toxic and affects my liver. The doctor lowed the dose for me already. I also hope for the new drug Erso that undergoing preclinical testing. You may read my posts on ErSO. We also have a new group on Facebook ErSO activism for breast cancer. We try to speed up the preclinical process. This compound showed curable results on mice at 99/100 rate. Hope if found effective in humans it will be a cure or a very effective treatment. I have faith in ErSO and hope for cure.
Best,
Marina
I hope the xeloda works for you. It is hard to understand why the drugs work differently for different people. I know very little about ErSO but see it mentioned in Health Unlocked.
Hi Ruby,Thank you for your encouragement. You may read about ErSO on this forum. You may also join ErSO activism for breast cancer group on Facebook. Finally if you google ErSO and breast cancer you will fond many articles there. I have faith in ErSO and so are many people with MBC. Good luck to all of us!
Best,
Marina
Strange 😱foot and hand side effects while on capecitabine/Xeloda. 
Piqray failed after 3 months, on to Xeloda
Anyone go on Verzenio after Ibrance stopped working?
Anyone on Xeloda?
