Well, if you’ve followed my messages, you’ll know I always try to stay positive and keep a good attitude. But...after Ibrance/letrozole surprised me by failing at 4 months- I went into this appt expecting the worst. So, the good news is that it wasn’t THAT bad. But...Afinitor and Exastamene did not work. And the one sentence I recall from the fellow was “you’re going through these options quicker than we expected”. I didn’t even get 3 months from afinitor. But the good news is that the spread in my bones seems contained. I guess xgeva is helping it. I’ve got new spots on liver and the 10+ from last time grew a little. There was a onco filling in for mine since it’s Hanukkah. His opinion: don’t get a liver biopsy yet. Try faslodex. Although he didn’t indicate what else would go with faslodex. He said the other option would be xeloda which is a chemotherapy pill. (All my meds come in a bag that says chemo but they’ve been hormone treatments). Xeloda is a true chemo I guess. I’m open. Just want to get success with something. My coworker reassured me that it took 18 months to find her combo. Then she got 2 years of NED.
The good news is I mentioned a couple of options—-stumping my fellow with articles I’ve posted and read. He researched them though. He also mentioned trials and genomic sequencing.
They want me to come back next week to discuss with my regular onco before deciding. I agree. Part of me wants to biopsy the liver to ensure we are treating with right meds. What if it’s Her2+ now or TNBC or even liver cancer? Who knows....
Faith, hope (or humor) and prayers
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Snowcone16
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My hope is you don’t have to go thru this much longer to find your combo. I think that onc could have phrased his remarks in a more positive way such as “well this didn’t work but you have a lot of options”. A big hug from behind the screen.
Yes, he is a fellow (dr in training I guess). He has been doing well and I always give him high ratings. Just something for him to learn. Just a couple weeks ago he gave us his cell phone number if I needed to reach him on weekend. My regular onco always reviews everything after and I get time w her too.
I just read scan results in detail. Confirmed everything he said. Bones stable but more growth in liver.
I’m sure he means well. But probably has no personal experience with a critical illness and I don’t think they take a class in how to talk to patients. Some are naturally more adept and comfortable on an interpersonal level. I had a surgeon call me to tell me I had lung Mets. I was in the bus headed back from my preop testing. Back in his office he told me to get my house in order. It’s true advise, but could ya throw a glimmer of hope for a few good years with treatment? Not A fan of calling with bad news.
Hi snowflake. I’m in a very similar situation. Diagnosed primary bc last year and treated with fec-t chemo, radiotherapy and tamoxifen. In May this year tiny liver nets were found.
I’ve been treated with zoladex, letrozole and Ibrance.
My ct results show none of these have worked and the mets have grown substantially .
I’m her2 negative and strongly ER positive. I had a liver biopsy and the cancer hasn’t changed receptor. My oncologist has now taken me off hormone blockers and Ibrance and I’m on xeloda (cape).
It’s very worrying. I feel like nothing can stop the cancer. I’m awaiting the results of tumour profiling.
Yes, it sounds like a similar journey. I was stage 2 in April 2016 then stage 4 since January 2018. I did radiation and tamoxifen w initial stage 2. My oncotype test said I had a 15% chance of recurrence. It was only lowered to 13% w chemo so I did not do chemo. Still, that raises another question—is chemo effective now when not initially? Dunno...
But I’ve read great results on xeloda and also on fulvestrant. We will find our combo! 🤗
I was diagnosed stage 4 May 2018, started faslodex and Ibrance after first round was having breathing problems. Cscan showed that treatment wasn’t working. Started Haleven worked well ended up with severe neuropathy, ended that treatment. Started xeloda in November, ended up with mouth sores bad, start a lower dose today. Dr. Says it’s working. I will keep you in my prayers that this will be the right treatment.
Xeloda is a great treatment- you can adjust the dose to give you less side effects- I take it 7 days on 1500 twice a day and 7 days off- if I get a mouth sore I quit early- and than start up again- it’s a marathon not a sprint!!! I hope to get many more years taking it since there is not a lot of options for triple negative 👎.
I have swallowing problem went to gastro Dr. yesterday. He seems to think I need to have my esophagus stretched. Waiting for appointment in January. On the xeloda I got every symptom except hand foot syndrome. My Oncologist had me on 3 in the morning and 3 in the evening for 14 days off 7 days. I was apple to do 11 days before symptoms appeared. We’re going to try 4 total for the day 2000mg total for 14 days. I hope everything works out for you. Prayers being said.
TELL them you want it done. You will have to pay a couple hundred dollars but what’s money at this point!!
As they say out here "sterkte" (stay strong). You are always such a positive voice on this site so hope they do find a combo to suit you soon. I too went through the letrozole etc rather faster than they wanted and Faslodex was not available to me at one point so went onto Xeloda (& I am Sooo anti the idea of chemo!) However my oncologist described it as oral and gentle and I must say I was happy on it for a year. Sadly the liver met then progressed and a higher dose was not suggested as hands and feet were borderline (hand-foot syndrome) but after a brief fling with nivorelbine (?sp) which also failed we tried Faslodex with mixed results. So as I was asymptomatic other than bloods going up[ and the CT showing slow progression I have been off all treatment since April. The last visit to my oncologist and the bone density scan showed osteoporosis on my left side so am about to have a Zomedron infusion and she has put me back on letrozole! Apparently - I quote - I am a bit of a puzzle but seem to be in partial remission! So we won't be going the heavy chemo yet I hope and I see her again in January.
I am sure you will find a combination which works for you - there is so much out there.
Good luck and if you have to go the Xeloda route it really isn't that bad as long as you start small and really look after hands and feet - Loads of lanolin!
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Lanolin is fantastic for really dried out skin
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Yes - and Xeloda does make soles of feet and palms of hands and edges of fingers dry and scaly. We used to use the vet's milking salve at the vet practice where I did some voluntary work for years and the cream supplied by the Xeloda supplier here felt just like that though the smell was a bit softer - and it was a pretty pink!
I do hope they find the right combo for you. I too have been a several combo's to find out that it does not appear that hormonal therapies are working for me. I on xeloda now and will have scans at the end of this month to see how its doing. Praying for good results. Even if it isn't, I'm fortunate that my onc tells me there are other options. My oncologist is associate with UCLA and they have a treatment for patients that were resistant to hormonal therapies by using them again and adding some other drug. We haven't gone down that path yet but at least I know I have other choices. I am sure your fellow will gain a little TLC as he continues - or I hope he does. Good luck to you. Sending hope and prayers for you.
Definitely keep me posted on the progress. I am also discussing adding metformin (a drug for diabetes) as it’s showed promise in hormone resistant tumors. ❤️
Greetings : Sister/warrior I am praying to our Jehova Jirah thanking the Lord for all progress, but asking for restoration/ NED. Be strong, and draw strength first from God where your help comes from, and also from your site sister/warriors. I patiently await victory in the name of the Holy Trinity Amen. Merry Christmas to you, and your loved ones, and all of our sister/warriors, and their loved ones. XoXoXoXo
Praying you find the right treatment and can get to NED. My Onc is very positive, always looking for options. His nurse is another story. She scares the heck out of me every time we talk.
I only got 3 months out of xeloda, had alot of chest pain with the xeloda. Now I am on an infusion of carboplatin and gemzar. I go for a scan tomorrow to see if this combination is working. I started with adromyacin and taxol and then went to xeloda and now i'm on the carboplatin, so it is a matter of finding what works for you. good luck
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