Stage 3b 2 positive lymph nodes one year later metastatic to liver
I had surgery to remove 1 large tumor 6.4 cm with 2 positive lympnoids. Went through oral chemo Capaecitabian and one round Oxaliplatin. My scan were all clear until 80 days ago after ct and then petscan now upper right lobe of liver shoes multiple small tumors and 2 small areas on lung rt less than 2mm Having liver biopsy next week. My Oncologist is putting me back on Capaecitabian 4 times daily then at least 4 iv rounds of iv chemo They consider this now stage 4 metastasized. Has anyone else experienced this?
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Thank you sooo much. I so much appreciate your response and support. Your 100 percent correct about processing this It all came as such a shock because in December I was celebrating the end of treatment and thinking I was moving on in life that I beat it and now here I go again. This waiting now for biopsy results is heavy. Especially last night when I received an email saying notes updated from Providence Hosptial updated and it was the procedure notes (it was on an app called My Chart)
stating 4 samples were taken during proceedure confirming malignancy during the biopsy. Did that mean the doc who did the ct liver biopsy new right away or was that a typo meaning he was sending it pathology for review to see if it was malignant I would have never read it on my own of I knew this was going to be there. My husband beleives it was a shortened to state to confirm being sent to pathology to review because it was tissue samples. I will also try the cream because 2 things are better than one! I will keep you updated and once again thank you so much Im also looking into the histroplasy (spelling) Mayo MD Anderson have used it with success and I found one place here in So Cal only about 20 miles from my house at St Johns in Santa Monica they go in with a new proceedure that targets the area and is pretty much non invasive and no iv chemo I dont know if I'm a canidate but already started looking into alternate treatment You still take Capaecitabian before proceedure however to avoid iv chemo oxaliplatin again would be amazing and in trials have a 95 percent success rate and its FDA approved. I maybe jumping the gun but this time Im looking into these type of treatments. Its this waiting game xoxo thanks again and I will definitely update you
thank you so much and I will Such a rough journey to navigate and acared to death
@grandmakat5 - I wanted to circle back regarding your use of moisturizers. My wife has always been a great fan of Bag Balm, and being an Old farm boy myself of course we know it's great use for dairy cows, however while a great moisturizer for many skin issues, may not be the best choice for palmar-plantar erythrodysesthesia (PPE, or hand-foot syndrome) caused by capecitabine for a few reasons:
Occlusive Nature: Bag Balm is petroleum-based and forms a thick, occlusive barrier. While this locks in moisture, it can trap heat and irritants, potentially worsening PPE’s symptoms like burning, redness, or sensitivity, which are driven by inflammation and skin damage from chemo drugs leaking into capillaries.
Lack of Targeted Soothing Ingredients: PPE involves specific skin damage (redness, peeling, pain) that benefits from products with anti-inflammatory or cooling agents, like aloe vera, urea-based creams (e.g., 10-20% urea), or prescription emollients. Bag Balm’s ingredients (petrolatum, lanolin, and 8-hydroxyquinoline sulfate) are more general-purpose and don’t directly address PPE’s inflammatory or neuropathic pain.
Potential Irritation: The lanolin in Bag Balm can cause allergic reactions in some people, especially with PPE’s already sensitive, compromised skin. Though rare, this could increase discomfort or lead to secondary irritation.
Not Clinically Optimized for PPE: Studies and oncology guidelines often recommend thicker, non-irritating emollients like Aquaphor, Eucerin, or prescription creams (e.g., 6% urea cream or topical steroids for severe cases) because they hydrate deeply without clogging pores or exacerbating inflammation. Bag Balm, originally designed for cow udders, isn’t formulated with PPE’s unique needs in mind.
That said, you mentioned Bag Balm helped reduce your PPE symptoms last time, which is great—everyone’s skin responds differently. If it’s working for you, it might be fine to continue, but watch for signs of worsening redness, pain, or cracking. Applying it proactively (multiple times daily, especially after hand washing) and avoiding triggers (hot water, tight shoes, friction) can help. If symptoms escalate, ask your oncologist about alternatives like urea-based creams or topical lidocaine for pain relief, which are often better tailored for PPE.
If you want, I can search for recent patient experiences with PPE management Let me know!
@grandmakat5 - I wanted to circle back on a few other questions I’m so glad you’re feeling proactive and exploring options while navigating this tough waiting period. Let’s break down your questions and thoughts, and I’ll do my best to clarify and support you.
Biopsy Notes on MyChart
The MyChart note stating that “4 samples were taken during procedure confirming malignancy during the biopsy” can understandably cause confusion and stress, especially if you weren’t expecting to see that. Here’s what it likely means:
Immediate Confirmation vs. Pathology Review: It’s highly unlikely that the doctor performing the CT-guided liver biopsy definitively confirmed malignancy during the procedure itself. Biopsies, especially for suspected cancer, typically require tissue samples to be sent to pathology for detailed analysis (e.g., microscopic examination, immunohistochemistry, or molecular testing). The phrasing in the note might be shorthand or a poorly worded summary, as your husband suspects, indicating that the samples were taken to confirm whether there’s malignancy, with results pending from pathology. During some procedures, a preliminary check (like a frozen section) can be done, but it’s rare for a CT-guided liver biopsy to yield an instant diagnosis. Most likely, the note reflects that the samples were collected and sent for pathology review to determine malignancy.
Possible Miscommunication or Typo: Electronic health record systems like MyChart sometimes use standardized templates or auto-generated phrases, which can be vague or misleading. The phrase “confirming malignancy” could be a template error or meant to say something like “taken to assess for malignancy.” Since you found it distressing, it’s worth calling your doctor or the hospital’s patient portal support team to clarify the note’s intent. You could say something like, “I saw a note on MyChart about my biopsy ‘confirming malignancy.’ Can you clarify if this means a diagnosis was made during the procedure or if samples are still being reviewed by pathology?” This can help clear up any confusion and ease your mind while you wait for the official results.
Waiting for Pathology Results: Pathology reports typically take a few days to a week, depending on the tests (e.g., 3-7 days for standard histology, longer for molecular studies). Since you’re still waiting, it supports the idea that the samples are being analyzed, and no final diagnosis was made on the spot. I know the waiting game is brutal, and it’s okay to feel overwhelmed. If you need tips for managing anxiety during this period, I can suggest some strategies
Histotripsy as an Alternative Treatment
You mentioned “histroplasy” (likely meaning histotripsy), a non-invasive procedure you’re researching at St. John’s in Santa Monica, about 20 miles from your home in Southern California. Here’s what I can share based on available information and your interest in avoiding IV chemo like oxaliplatin:
What is Histotripsy?: Histotripsy is an FDA-approved, non-invasive ultrasound-based technology that uses focused sound waves to mechanically break down targeted tissue (like tumors) without incisions or heat. It’s being studied for liver tumors, including metastases and primary cancers like hepatocellular carcinoma. The procedure creates microbubbles in the tissue, which collapse and destroy cancer cells with precision, sparing surrounding healthy tissue. It’s appealing because it avoids surgery and often doesn’t require general anesthesia.
Use at Mayo, MD Anderson, and St. John’s: Mayo Clinic and MD Anderson have been involved in histotripsy trials, particularly for liver cancer, with promising early results. St. John’s Health Center in Santa Monica is part of Providence, and some of their facilities are exploring or offering histotripsy through clinical trials or specialized programs. The 95% success rate you mentioned likely refers to specific trial outcomes (e.g., tumor ablation rates or local control), though exact figures depend on the study and cancer type. For example, a 2023 trial for liver tumors reported high ablation success, but long-term survival data is still emerging.
Capecitabine and Histotripsy: You mentioned taking capecitabine before the procedure. In some protocols, systemic therapies like capecitabine are used to shrink or stabilize tumors before local treatments like histotripsy, especially for metastatic disease. Histotripsy itself doesn’t typically involve IV chemo like oxaliplatin, which aligns with your goal of avoiding it. However, whether you’re a candidate depends on factors like tumor size, location, liver function, and overall health. St. John’s would likely evaluate you through imaging (CT/MRI) and your biopsy results.
Next Steps: It’s fantastic that you’re researching options early! To see if you’re a candidate, contact St. John’s Santa Monica (Providence) directly—ask for their oncology or interventional radiology department. You can say, “I’m interested in histotripsy for liver tumors. Can I schedule a consultation to see if I’m eligible?” You’ll likely need your recent scans and pathology results (once available). Since it’s close to home, that’s a huge plus for convenience. If you want, I can search for more details about St. John’s histotripsy program or check for recent patient experiences
Emotional Support and Next Steps
The waiting game is so tough, especially after seeing that MyChart note. It’s okay to feel like you’re jumping the gun by exploring treatments—it shows you’re taking control, which is powerful. To help with the emotional rollercoaster:
Distraction: Try low-key activities like watching a comforting show or listening to music.
Support: Lean on your husband or a friend to talk through the stress
Clarification: Call your doctor or MyChart support ASAP to clarify the biopsy note—it might ease some anxiety. And besides that's their job! Would you feel comfortable in doing that?
I certainly will call my oncologist on Monday! thank you so much someone else on this thread mentioned the histroscopy thats why I just googled to see what hospitals offer it I was looking at the ablashia also the tumors are located in right upper lobe My overall blood test are 100 percent perfect excpet cea flew up to 15! I was under tons of stress and heard that can cause an increase not that high I realize My oncologist says my body besides the cancer is fantastic I have no other pre existing condtions I was a smoker and quit early March 2024
I was diagnosed with rectal cancer in 4/24. I did 6 weeks of oral chemo (capecitabine) and radiation 5 days a week ended 7/15. I was told no checking to be done for months because the treatment is effective after ceasing. In January of 25, a colonoscopy showed a new smaller tumor in the anal canal. A month later a biopsy confirmed lymph node and liver lesions. In a little over 2 months with a new doctor and medical group at Mayo Clinic, I experienced my first cancer decline by more than 50%. My treatment, the care and the doctors are all to be commended. Truly, I believe the one thing that made a difference for me was God. You see...I have been a devoted and faithful follower of Jesus for about three and a half years and realized when first diagnosed that God still had my best interests at heart and I would be fine with continuing to live on earth for maybe a few more years or maybe another 30 years! I am 65 now. After all...I know where I'll be going and it would be so much better than the struggles we contend with here on earth. I have so many people praying for my healing and encouraging me to pray too. I do pray but, I was struggling with praying for God to heal me. Perhaps because I thought well, he loves me and knows what's best anyway. Well, I finally figured out what praying for healing can do for your soul and with true faith I began praying regularly for God to heal me. Within a week or two, my petscan showed no sign of cancer on the liver and more than a 50% reduction on the lymph nodes and the anal tumor. 1 Corinth 4:20. "For the kingdom of God does not consist in talk but in power" God is real and ready for you.
thank you so much and prayers for us all fighting this horrible disease. Do you mind me asking if you had a different course of meds at Mayo? Ive been researching even though I dont have my biopsy results yet to seek an alternative doc and treatment🙏
Yes. I am given both carboplatin and paclitaxel one week and then paclitaxel only for the next two weeks...I believe. My immune system was weakened and that schedule was interrupted briefly. I was given an immune system boost drug that attaches to the upper arm and is released by injection approx 24-29 hrs after infusion is complete. It works and allowed me to get back on my chemo schedule.
thank you so much! i will inquire with my doctor!🙏💙
How are you feeling? How is the capecitabine treating you? How many milligrams do you take a day? I don't recall seeing that. If you did say that, I apologize for asking again. I am on my second week of capecitabine for this two week cycle. I am a few days ahead of you. We can compare notes on how we are feeling if that would help?