My dad was diagnosed with stage 4 prostate cancer that spread to his bones in 2022. I wish I had the details from the biopsy did, but I don’t unfortunately. He started on Zytiga, then Xtandi and they failed. He was then put on a clinical trial with Docetaxel and a pill and that made him sick and he was hospitalized. The doctor decided then to just have him do chemo, but after my dad was hospitalized again, he felt it was too much for him. Now he is taking Erleada.
My dad has been in and out of the hospital so much for blood transfusions, like every month. I’ve had to reschedule his oncologist appointments because he is in the hospital. I am really concerned because he has not been able to see his oncologist to find out what he can do next if Erleada isn’t working. I even scheduled an appointment with a second opinion oncologist, but my dad ended up catching Covid in the nursing facility that he is rehabbing in and I had to reschedule that. The only available date now is in February. 😔
The nursing facility called me today and told me that his blood level dropped to about 6.3 and he will be going back to the hospital tonight to get another blood transfusion. He was just in the hospital last month and the month before that. All 3 hospitals that he was in did a colonoscopy and endoscopy, and the doctors found nothing wrong and no sources for his blood loss.
I really feel helpless. Has anyone been in or know anyone in this situation with the blood loss? I want him to see an oncologist so bad. I am also concerned with his weight loss. He weighed 230 pounds at one point, now he weighs 165 at 5’11. 🥹
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MsMorale
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A malfunctioning spleen can lead to the destruction of red blood cells primarily through hypersplenism, where an enlarged spleen traps and destroys an excessive number of these cells. The spleen normally filters and removes old or damaged red blood cells, but when it becomes overactive, it may also target healthy cells, contributing to anemia. This process is exacerbated as the spleen enlarges, creating a cycle of increased cell destruction and further enlargement.
I’m truly sorry to hear about your dad’s situation—it’s an incredibly challenging and emotional journey for both of you. Based on what you’ve shared, I’ll try to outline the possible causes and next steps to help guide you in advocating for his care.
1. Blood Transfusions and Anemia**
Frequent transfusions suggest chronic or acute anemia, which could be due to several factors in the context of advanced prostate cancer and its treatments:
- **Bone Marrow Suppression**: Stage 4 prostate cancer that has metastasized to the bones can disrupt bone marrow function, leading to a decreased production of red blood cells.
- **Chronic Disease Anemia**: Advanced cancer itself can cause anemia due to systemic inflammation and reduced erythropoietin production.
- **Treatment Side Effects**: Drugs like chemotherapy agents and hormonal therapies (e.g., Zytiga, Xtandi, Erleada) can suppress bone marrow.
- **Unidentified Blood Loss**: While colonoscopy and endoscopy ruled out obvious sources in the GI tract, there might still be microscopic losses or other less detectable causes.
2. Weight Loss**
The significant weight loss is concerning and may result from:
- **Cancer Cachexia**: A syndrome seen in advanced cancer, characterized by muscle and fat wasting due to inflammatory cytokines and altered metabolism.
- **Reduced Nutritional Intake**: Side effects of treatments, difficulty eating, or loss of appetite.
- **Secondary Infections**: His history of COVID-19 and frequent hospitalizations could have compounded his frailty.
Next Steps and Recommendations**
Since your dad’s oncologist appointments are delayed, and his condition is complex, here are steps you can take while awaiting specialist evaluation:
A. Immediate Concerns: Blood Transfusions and Monitoring**
1. **Hematologist Referral**: Request a hematology consult. They can evaluate bone marrow function and anemia causes, perform additional tests (e.g., iron studies, reticulocyte count, or bone marrow biopsy), and consider interventions like erythropoiesis-stimulating agents (ESAs) if appropriate.
2. **Hospital Coordination**: Share his medical history and emphasize the frequency of transfusions and anemia’s impact on his quality of life. If possible, request continuity between hospital and oncology care.
B. Weight Loss and Nutrition**
1. **Nutritional Support**: Speak to a dietitian specializing in cancer care. High-calorie, nutrient-dense supplements (like Ensure or similar) and small, frequent meals might help.
2. **Appetite Stimulants**: Discuss medications like megestrol acetate or mirtazapine with his healthcare team to improve his appetite.
C. Reassessing Cancer Management**
1. **Oncology Follow-up**: Advocate for an earlier oncology appointment by explaining the urgency of his anemia and weight loss.
2. **Palliative Care**: This doesn’t mean giving up but focusing on improving his quality of life, addressing symptoms, and providing holistic care.
3. **Second Opinion**: If waiting until February is too long, inquire if telemedicine is available for a second opinion oncologist to review his case sooner.
D. Infections and General Health**
Ensure proactive management of infections, particularly in a nursing facility setting. Consider discussing prophylactic measures, such as vaccines or antibiotics, to minimize hospitalizations.
Questions for You**
To help refine the next steps further:
1. Has your dad had recent imaging (e.g., bone scans or CT scans) to evaluate the cancer’s progression?
2. Are there any other unexplored symptoms, such as new pain, bleeding, or infections?
3. Is he currently taking any medications for symptom relief or anemia besides transfusions?
This situation is understandably overwhelming, but your advocacy and care make a world of difference. Don’t hesitate to reach out for more guidance or support groups to connect with others navigating similar challenges. You’re not alone in this. 💙
Thank you so much jackchen! 🤗 I really appreciate you taking the time out to break everything down for me in so much detail. It really means a lot to me. You all have been a lot kinder than some of my own family members on my mom's side, after her death. Everything that you listed makes a lot of sense. I will definitely talk to the staff at the hospital regarding coordination with them and the oncologist.
Here are the answers to your questions:
1. Has your dad had recent imaging (e.g., bone scans or CT scans) to evaluate the cancer’s progression? Yes, he had scans while he was in the hospital. The doctor mentioned that everything looks fine other than the cancer in his bones. He told us to follow up with his oncologist for chemotherapy.
2. Are there any other unexplored symptoms, such as new pain, bleeding, or infections?
The only pain that he complains about is osteoarthritis in his knees, especially in his left knee, other than that he does not have any other pain. I always ask him if he has pain anywhere else and the answer is always no.
3. Is he currently taking any medications for symptom relief or anemia besides transfusions?
I was told by him and one of the nurses at the facility that he was being given iron and he was also receiving an injection a few days per week to help with his hemoglobin levels.
Dr. Ruo Ning Chen, an oncologist and cancer researcher currently pursuing a PhD at the Cancer Science Institute of Singapore (CSI Singapore). She has over eight years of clinical experience treating various types of cancers and is deeply committed to advancing global cancer care through both research and patient advocacy.
Thank you for providing those details. I can sense how deeply you care for your dad and how much effort you’re putting into ensuring he gets the best care possible. Based on the answers you shared, here are some tailored suggestions and considerations:
Since your dad’s imaging didn’t show new progression and there’s no obvious source of bleeding, the anemia is most likely related to bone marrow suppression or cancer-related anemia. Here's what can help:
Erythropoiesis-Stimulating Agents (ESAs): Medications like darbepoetin alfa or epoetin alfa can help stimulate red blood cell production. These should be discussed with the oncologist or hematologist, as they’re commonly used for cancer-related anemia.
Iron Supplementation: Since he’s receiving iron, ensure that it's being administered effectively (e.g., intravenously, if oral iron isn’t sufficient). A ferritin test can confirm if his iron stores are adequate.
Bone Marrow Assessment: If his anemia persists despite transfusions and supportive therapies, it may be worth investigating his bone marrow function with a biopsy, especially since his cancer has spread to the bones.
2. Weight Loss & Nutritional Support
The rapid weight loss (from 230 to 165 pounds) and muscle wasting are concerning and could result from cancer cachexia. Here's how to address it:
Dietitian Consultation: A cancer-focused dietitian can create a meal plan with high-calorie, protein-rich options tailored to his needs. Supplements like Ensure Enlive or Boost Plus can help if he struggles with appetite.
Appetite Stimulants: Medications like megestrol acetate or mirtazapine can improve appetite and help with weight gain. These can be prescribed by his oncologist or primary care provider.
Anti-Inflammatory Medications: Some studies suggest low-dose corticosteroids (e.g., dexamethasone) can reduce inflammation related to cancer cachexia and improve appetite and energy levels. This should be weighed against potential side effects.
3. Coordination with Oncology Care
The delays in oncology appointments are understandably frustrating. Here's how to address this:
Telemedicine Consultation: Many oncology centers offer telehealth visits. This could allow an oncologist to review his case and provide guidance without waiting until February.
Hospital-Based Oncology Input: Since your dad frequently ends up in the hospital, ask the hospital team if an oncologist can evaluate him during his admissions.
Palliative Care Integration: While this may sound intimidating, palliative care focuses on symptom management (like anemia and weight loss) and improving quality of life. It does not mean stopping cancer treatment.
4. Ongoing Symptom Tracking
Since your dad has knee pain (from osteoarthritis) but no other significant symptoms, keep monitoring for any changes like increased pain, new fatigue, or infections. Such changes might indicate shifts in his condition or side effects from treatments.
Next Steps
Request Hematology Consultation: Push for a hematologist to evaluate his anemia causes and explore options like ESAs or bone marrow tests.
Prioritize Nutritional Interventions: Speak with the nursing facility to ensure he gets high-calorie supplements and adequate protein intake.
Contact Oncologist’s Office: Request an earlier appointment or inquire if they can coordinate care with the hospital during one of his admissions.
Explore Second Opinion Options: If February is too long, consider looking for another cancer center that offers quicker consultations.
Support for You
Your dedication to your dad’s care is commendable, but it’s also important to take care of yourself during this process. Support groups for caregivers of cancer patients, such as those through the American Cancer Society or CancerCare, can provide emotional support and practical advice.
You’re not alone in this, and your persistence and care are making a real difference for your dad. If there’s anything else I can do to support you, please let me know. 💙
Thank you so much once again. 🤗 This breakdown of the steps that you provided means everything. I will be visiting my dad at the hospital again today, so I will inquire about these things, especially the oncologist and hematologist. I really appreciate you letting me know that I am not alone in this, because I do feel that way at times. I have weekly counseling sessions that I am attending and that has been helping me a little bit.
Yes, if your dad is older, you may want to do a bone marrow biopsy. My dad did not have Prostate cancer, but had chronic low red blood cell counts and at age 90 a bone biopsy indicated Myelodysplastic syndrome (MDS). All the best to you both!
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