Hello everyone. New member posting for my dad. 72yrs. Found out he had pc in stage 4. Psa 160 and bone mets throughout spine, a couple in ribs, some in femur bones. He started Lupron approximately 4 weeks ago and noticed considerable reduction in pain. He's also had radiation which has had mixed results. It flared his colitis and gave him a painful burning sensation when he urjnates. They'd only radiated the sacrum area because that's where most of the pain was. Since then (2 weeks), he's complaining of pain again. Not what it was at it's peak but in various areas. What has your experience been? Does it take awhile on the Lupron? Will chemo help? Should he ask for more radiation? His doc is out of the country. We will ask this of him once he returns . Thanks in advance for sharing your experience
Experiences with bone pain: Hello... - Advanced Prostate...
Experiences with bone pain
Unfortunately, I have experience with bone pain before diagnosis. I had a PSA of 300 at diagnosis and it rose to 400 before I started treatment. I had a significant amount of pain and was taking opiate-based pain killers as well as ibuprofen which was also helping. I could barely walk at times with extensive mets to femurs, pelvis, spinal cord, ribs, knees, shoulders and various other places. I didn't get radiation, just casodex and Lupron. I noticed an immediate reduction in pain from starting casodex, then after about 4 weeks on Lupron and after starting chemo my bone pain was completely gone. I''ve had a few small flares here and there, only requiring ibuprofen to deal with.
How has his PSA and Alkaline Phosphatase levels been? Hopefully they are both coming down. There are some people who do continue to have pain issues even while making progress with their bone mets. And others that take longer than 4 weeks to improve.
I would look at the PSA and Alk Phos numbers and maybe have some imaging done if things don't start improving. Radiation is generally only useful when there is only a small number of areas to radiate. If the mets are extensive and spread out, the damage to surrounding tissue is too much to use radiation.
Hoping for the best for your dad.
Good advice. Might also want to ask the doctor about Xofigo, which frequently leads to pain reduction.
When I was first diagnosed, I went to an Emergency Room with morphine level pain to my lower back at the L4-L5 position, and also in my lower left abdomen. Tests showed numerous mets to bones and lymph nodes. The back pain was near one of many spinal bone "mets", and the abdominal pain was from a lymph node the size of a golf ball. My PSA was 5,006. I went on (temporary Casodex to prevent a testosterone "flare" and then) Lupron and the bone agent Zometa. My pain went below Norco level within a week, and went below over the counter pain meds level within a month. That was over 3 1/2 years ago. I've never had any spot radiation to bones, but I have had reports of what appear to be from bone "mets" on CT Scans, Nuclear Medicine Bone Scans, MRIs, and a Ga68 PSMA PET scan at various times since initial diagnosis. I, thankfully, remain generally asymptomatic in regards to bone pain since being on treatment(s).
I think firmigon and axtandi are more appropriate for this extensive amount of cancer with pain. No testosterone flair with the firmigon and quick castrate level reached. Dr. Myers put a patient in my group with less than this Also avodart for the more potenspinalt dht. Some are even adding 6cycles of chemo. may to agressive for some. Tough decisions to make.. Do your tesearch and present to your mo. Its your cancer and not his. I know for firmigon is immediately given when spinal mets are involved for threat of parallysi. Hope you the best. Rocco
I had spinal compression pain which caused difficulty with sleep. The spinal nerve root canals were being intruded on. I had 19 cycles of radiation which improved the pain considerably. Been pain free for six weeks now. The other option is Radium 223, Xofigo. Only caution with the Radiation, was esophagus damage, which has since healed and nausea. Have mets on L1,L2, L3, L4, T9, T10, T11, T12 plus numerous rib, clavicle and iliac. Best of Luck.
I had a PCa-tumor caused spinal cord compression, which caused sudden loss of mobility. After emergency surgery & the intensive part of rehab to learn to walk again, I had cleanup radiation to the site. It caused radiation-induced esophagitis, which may be the same as what you're referring to. That was miserable. For a few weeks, despite a liquid med, everything I tried to get down my throat--even a sip of water--was painful.
If anyone faces radiation to an area that could have this side-effect, I suggest you ask if there is a form of radiation available that would be more of a surrounded target, allowing you to avoid this misery.
I also wonder if this whole episode, with its major detrimental impacts on my life, some of which continue now--almost 6 years later--could have been avoided with more active imaging & preventive treatment.
I discussed this with my radiologist. Since I had mets on the anterior and posterior sides of my spinal column, I had radiation from the anterior, 45 degrees left and right and also from the posterior. It was the posterior direction that caused the most issue for my esophagus, plus it had to be low enough had to not radiate my heart. He did tell me afterward they he could have lowered the dosage one level and probably been just as effective in reducing the spinal pain and mets. But there is no way to forecast this.
Thank you all for sharing. I'm curious to know if you feel there is reason to be concerned if there was improvement and then decline this soon into treatment. We are very anxious and will probably schedule with another doctor in his mo's group given the circumstances. We were really hoping for better results but perhaps it's too early to evaluate that
I'd say, your dad is early into treatment, and should be able to be heard by his doctors as these new drugs are changing his body. Review by a competent treating physician seems quite normal. Your instincts are quite right.
He does actually. He's at the Cleveland Clinic. The radiologists radiated the area that was hurting him the most. He's complaining of pain in a variety of other areas now after having felt some relief for a brief period of time. Our fear, of course, is that the Lupron won't work for him
If he's in pain, I would call tomorrow and insist on seeing an oncologist that specializes in prostate cancer immediately since your doctor is out of the country. I've had bone mets and it really hurts. As stated earlier, you must be very proactive. And have a list of questions ready to discuss.
Good luck!
Stumpgirl, welcome to our group. I was reading through, waiting to see if someone would give you the advice that Nalakrats did. And then you surprised us with the news that your dad already has a treatment team at a cancer center.
Please follow James's advice. I don't know how long his doctor--I assume you mean his medical oncologist?--is away for, but there should be 1 or more medical oncologists available to patients in his oncologist's caseload while the doctor is away. Something we all have to learn is the need to be pushy sometimes to make sure we get the attention we need. If you follow James's suggestion & Cleveland Clinic is an organization with compassion for its patients, you should get help quickly. Good luck!
Folks, allow me to piggyback on our new member's question to ask if you can answer a question of my own. Have you found cancer pain, in bone specifically or elsewhere, to be distinguishable from other severe pain you've experienced? My spinal cord compression, immediate hospitalization & emergency surgery did not, thankfully, give me an opportunity to perhaps answer that question for myself.
I hear about "cancer pain," & a well-known medical oncologist told me it's strong, persistent & distinctive. I wonder if any of you have found it to be distinctive in describable ways. I'd like to hear about it so I, & other readers, might be able to know it when we feel it. Thank you.
Neal
I think it depends on how advanced the cancer is as to how it feels. There is always some kind of transition from a time when there was no pain to a time when there was cancer bone pain. I probably caught mine before it got really bad, although it was bad enough to need opiate-based pain meds by the time I went in.
It started out for me as lower back pain which I thought was related to age and how I probably wasn't bending down right or picked up something wrong, etc. But then other parts of my body started getting painful too. I really thought it was muscles or joints at first, maybe rheumatoid arthritis or some other kind of inflammatory response. It was really hard to put a finger on exactly where it was coming from and it was probably putting stress on joints and muscles. Taking ibuprofen made a big improvement so I thought it was inflammation. I also had fevers and night sweats so I though maybe some kind of infection, I really didn't know what was going on. The only bone pain I could definitely say was from my bones was an area on my left side rib cage. The ribs are pretty easy to feel and they are exposed. I could touch right where the metastasis was and it hurt right where I touched. But other than that, I really could not pin point exactly where the pain was coming from.
Elgie has had to take these meds to help the pain and still needs to take them. I don't know if it's still bone pain from the cancer because he is in remission or if it's arthritic. Oxycodone, Fentanyl patch, celebrex, Aleve occasionally for breakthrough pain and Cymbalta. Previously he was also taking Oxycontin but has stopped that one. Without the rest he can't get out of bed. I hope they see your Dad asap to help his pain.
My dad is 76 and I had to take him to the er at 3am November 25, 2018 for back pain when we found out he had pc. Nothing helped the pain except the immediate radiation and steroids they started giving to him within the first 24 hours. He didn’t have pain again until December 24 when I took him back to the er for shoulder pain and sure enough there was a tiny tumor they hadn’t noticed before. They Gave 5 radiation treatments and no more pain since. He’s on Firmagon Casodex and Zytiga. I’m praying to keep him on treatments as long as possible to avoid as much pain as possible.
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