One year journey

I was diagnosed a year ago with 2 tumors, one ductal and one lobular, and it was ER+. In July we found it had metasticized to my vertebrae. A bone biopsy and a new blood test showed it had perhaps changed to triple negative. However, none of my 3 oncologists believed those results because I didn't seem "sick enough." God has been helping me so much.

In October I began treatment with Letrozole and Ibrance. In December we discovered that the cancer has spread yet again, into many more vertebrae and into my liver. A biopsy of the liver on December 29 has given us conclusive results that it remains ER+ and is invasive lobular carcinoma. So we know we were on the right track with the medications, they just didn't work.

This coming week I'll be getting all new scans and then start on Xeloda. I'm praying my body is strong and the tumors will shrink on the new medicine.

You are right in saying that invasive lobular carcinoma is more sneaky. I look forward to joining the webinar.

17 Replies

oldestnewest
  • Hi..I think the fact that you're ER+ is a plus. Unusual that you were diagnosed with ductal AND lobular at first. Did they get that wrong?

    Yes, lobular is sneaky and hard to detect. I originally was diagnosed with ductal but after my slides were reviewed by a 2nd lab, it was found that my tiny tumor was lobular. 1 1/2 yrs later I had mets to spine, ribs and pelvis. I'm on Xeloda but my doctor adjusted the dosage differently than what is recommended by the manufacturer. I take a lower dosage every 3 1/2 days and then take nothing for 3 1/2 days. It's been working for 19 months. My Oncologist is watching me very carefully. Had skeletal x- rays, CT scan and even brain MRI ( my request) in Sept. 2016. So far the Mets are only in bones. Zometa infusions have strengthened the fractures in my bones significantly. I have bone pain but it's manageable with Ibuprophen, heat, and Voltaren gel.

    Sounds like you're getting good care. Don't get discouraged. My doctor says that there are several drugs out there to use if any of them stop working. Also new drugs are coming down the line.

    I hope you're getting something for your bones such as Zometa or Xgeva. Zometa helped me a lot! Now I'll get the infusions every 3 months.

    I wish you much luck in your treatment plan. Keep us posted! Kats3

  • Yes, I'm also getting Zometa infusions. The first was in August, and I had quite an adverse reaction to it, extreme flu-like reaction. So the doctor added benadryl and a couple of other pre-meds and now it's smooth.

    After the initial 4 rounds of chemotherapy, I had 6 weeks of radiation to my breast, followed by 4 weeks of radiation to my skull base where bone mets had weakened an area. In December when bone pain and muscle spasms became extremely intense (I didn't realize that I didn't have to bear the pain), I had an MRI, saw the spread of the mets L11 TO S2, and have finished 16 of 20 radiation treatments to lower back. These are helping tremendously.

    I'm so thankful that there are many treatment options, for such a supportive group of medical professionals, and for avenues like this site that help us connect with one another.

  • Hang in there and don't get discouraged. It is quite possible that Xeloda is the drug of choice for you. Give it a go And remember the metastatic community will always be here for youif you need us.

  • This group is a great avenue for support and information. It helps us to connect, compare in some was, learn and encourage

  • Hi Susan. I am fairly new to the site as well. I'm sorry you've had such a rough go of it. I am just starting the medication that didn't work for you. I find it so interesting, how the drug protocols work so differently for each of us even though the diagnostic impressions are so similar. Wishing you all the best in your journey and that your next medications are spot on. Jan

  • Me too. Thank you.

  • It is quite true that one size doesn't fit all and that they way everyone responds to these chemos is quite different What works for one might not work for another patient The best things is that there are a lot options out there and more treatment that are waiting to get approved

  • Thank you so much, Jan.

  • I pray they will find the right meds soon. Hang in there and keep the faith.

  • Xeloda is the way to go- I started out on 2000mg twice a day- too high- side effects hit hard and fast- nausea and the hand and foot syndrome. Decreased to 1500- still too high- decreased to 1000 mg 14 days on 7 off. Now 1500 in am and 1000 in pm. Still have the hand and foot side effects but can tolerate- 15-3 is stabilized so I'm sticking with it!!

  • Good Morning SusanDB,

    So thankful to have found this site! I was just diagnosed with bone mets in December, mostly in my pelvis. Started Ibrance with Letrozole last Saturday, go for labs next Friday then will be rescanned in 3 months. SO blessed to know there are "many tools in the tool belt" as my oncologist says :)

    My original BC in 2013, was stage IIIA, 3/9 positive lymph nodes, ER, PR +. This certainly is a scary journey, but I trust in God's plan and absolutely needed to find this outlet.

    STAY STRONG 💪🏼!!

  • Yes, this community is a great resource. I was on Letrozole and Ibrance, with Zometa infusions. But an MRI done in December showed that the cancer has spread to my liver, not what I wanted to hear for at least another year. But Xeloda is next, (scans on January 27). And I've read quite a few posts here that indicate Xeloda has had good results.

    God blesses me every day. Yesterday my Stephen Minister from the church noticed how God has answered several prayers and is helping my outlook. This morning I came across a great video, "A Good Day" from gratefulness.com about the blessing that today is.

  • Good Morning Susan. I will be praying that on January 27 those scans look better! Did you already start on Xeloda? I get my first labs post Ibrance on Friday, hoping my WBC are holding up. I feel nauseated on and off during the day and tired, but otherwise OK.

    Yes God does bless us everyday, no matter what! I will check out the video - sounds like something I need to see.

    Do you by chance have the bible on a smart phone or tablet? I'm reading a 14 day devotional called "God Will Carry You Through" -- it's been very uplifting.

    Let's STAY STRONG!

  • I'm ready for the scans. Did I mention that I recently finished 20 radiation treatments to my lower spine? Radiation burns on the belly button are not fun!

    The newest wrinkle right now is how exhausted I'm feeling. Exhaustion from radiation and because the steroids made me not able to sleep well. But I was feeling exhaustion beyond exhaustion. Has anyone else felt that wiped out? Like Mr. Incredible in the scene on the island, where he is pelted with lead.

    So I saw my primary care physician who ordered labs to test B12 and thyroid levels. Turns out my B12 was more than 100 points below where it should be, and my thyroid was off. So now I'm on B12 Injections weekly, then monthly, to bring it up. I guess this takes a while. I've been holdingmy phone about 20 now, and my arms are tired. That's how exhausted my body feels. But I'm so glad that I listened to my body and asked for help. And the doctor was spot-on. Yeah!

  • There are several Bible sources online: Gateway Bible, oremus.org, biblica.com

    If you need a more direct link, let me know.

  • How is the Xeloda with its side effects? So, glad to here that you are still on your path. I too have had disappointment with Ibrantz.

  • Hi, I'll begin Xeloda next week. But what I read from others in this community sounds encouraging. We will see.

You may also like...