Lots of frustration with failed treatments, as follows:
Three sessions (infusions) of Provenge did not have any real impact, except psma numbers continued to double. Xtandi was started in September and PSA numbers began to triple and by December were over 300. Lower back pain developing.
A psma full body scan in early January showed extensive spread in bones and especially in sacrum; the cause of lower back pain (difficult to sit or stand for any length of time).
January- carbotaxol (sp?) with prednisone was started (planning on 5 sessions).
February (last week)- 3 sessions of targeted radiation on sacrum and the 2nd chemo infusion. Follow-up with radiologist in a month…
Eligard and Xgeva infusions ongoing- every 3 months.
Onc will do PSA reading in another few weeks as she indicated the numbers often rise in the immediate aftermath of chemo.
My husband is spending a lot of time on the sofa as sitting and standing for extended period becomes uncomfortable. We had hope that the radiation treatments (ended on Friday) would lessen discomfort. It hasn’t. And are curious to know how long it takes to show results.
My husband was offered pain meds, but says the pains not that bad…
Sooo, if anyone one can provide any insights on his newest treats as we move forward we’d be much obliged.
-elisa
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Lavender22
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Unfortunately, there are no biomarkers for Provenge, patients just live longer. Radiation of metastases causes inflammation (and a temporary increase in serum PSA as cancer cells die) which may increase pain until the inflammation subsides. NSAIDs or corticosteroids (e.g., Medrol dose-pak) may provide relief. I'm a fan of the Xofigo combinations in patients who primarily have bone metastases:
Many thanks for your reply. As you point out there are no measurements for Provenge as far as efficacy goes. We do hope that it has supplemented his immune system in this fight. And Scott’s radiologist did say she wanted to wait a month before a strict analysis of his response . Same with the chemo—- shedding the cancer creates an upheaval in the PSA numbers.
Glad to hear you are a fan of Xofigo, as I think that will be the direction following the chemo.
Scott is nearly 5 years into this and began with spinal compression from the start. So things have gone pretty well. We take it week by week.
Thank you again. The forum has been a great resource for us.
I'm not sure Provenge can be evaluated as succeeding or failing in the same way hormonal drugs or chemo or radiation can be evaluated. Provenge is not supposed to drop PSA or stop radiographic progression. I know that sounds mysterious, and I'd be interested in hearing from others on this subject.
I had Provenge in September, but there's no way that I'm aware of that I could accurately tell someone what it did. But supposedly it does positively impact long term survival.
Yes, I think we were hoping for a magic bullet with this immunotherapy and when the psma scan results came in some 3 months later and showed a lot of skeletal spread it was a bit of a jolt. But, as you and others have indicated, this treatment isn’t going to lower the PSA numbers but help your immune system fight the disease. Time will tell.
How to alleviate pain in the sacrum, the cause of lower back pain from prostate cancer.
A I - ChatGPT said:
Pain in the sacrum due to prostate cancer is often caused by metastasis (spread of cancer to the bones) or pressure from the tumor itself. Managing this pain typically requires a combination of medical treatments and supportive therapies. Here are some options to help alleviate pain:
Medical Treatments
Pain Medications
NSAIDs (e.g., ibuprofen, naproxen) – For mild to moderate pain.
Opioids (e.g., oxycodone, morphine, fentanyl) – For moderate to severe pain, as prescribed by a doctor.
Corticosteroids (e.g., dexamethasone, prednisone) – Help reduce inflammation and pressure on nerves.
Bone-Targeted Therapy
Bisphosphonates (e.g., zoledronic acid, pamidronate) – Help strengthen bones and reduce pain from bone metastases.
Denosumab (Xgeva) – Another option to prevent bone fractures and reduce pain.
Radiation Therapy
Targeted radiation can shrink tumors pressing on the sacrum and provide significant pain relief.
Hormone Therapy
Androgen Deprivation Therapy (ADT) – Lowers testosterone, which can slow cancer growth and reduce pain.
Surgery or Interventional Procedures
Nerve blocks – Injection of anesthetics to numb the affected nerves.
Kyphoplasty or vertebroplasty – For stabilizing weakened bones if fractures occur.
Supportive Therapies
Physical Therapy & Gentle Exercise
Helps maintain mobility and reduce stiffness.
Low-impact exercises like stretching, walking, and yoga can help.
Hot/Cold Therapy
Heat packs can relax muscles around the sacrum.
Ice packs can reduce inflammation and numb pain.
Acupuncture & Massage Therapy
May help with muscle tension and pain relief.
Supportive Devices
Back braces or cushions can provide additional support.
Mind-Body Techniques
Meditation, deep breathing, and guided imagery can help with pain perception.
Yes, he did just complete 3 sessions of targeted radiation. Radiologist said that it takes a little time for him to get relief. I’ll push him on the nsaids. He did meet with palliative care NP who discussed options for pain releases and this was high on the list.
You know I like to kid around, so tell the number 2 boss, you're number 1 that you heard of a great place for forgetting pain. Tell him "You're gonna take him for acupuncture where they use 24 inch long thick dull pointed needles and that should automatically make him forget any other pain he may have".......Remember It's only a joke!!!
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