Lately I’ve been having pain in lower back, pelvis and ribs. I work out a lot with weights and aerobics and I play golf. I’ve had low back pain off and on since suffering compression fractures at L1, L2, and T12 due to a fall back in 1965 and a herniated disc in 2006 which caused sciatica but I had it pretty much under control with shots and PT.
My last Psa was .175 and I just had another test. I don’t expect it to be high enough to allow a CT Pet scan with axumin or PSMA to find any mets. As my profile states, I’m on ADT3 and Xgeva. Could these pains just be side effects of treatments? What should I do next?
Bob
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I exercise 5 times a week. Because of treatment and exercise, I always have this sensation of bone/muscle discomfort. It's not pain, just discomfort like you want to stretch or message it. So clearly I was very alarmed about new mets. My PSA was down to 0.14 (gave me a little comfort), and I was due for a PET scan anyways. PET scan showed all mets were healing, and no active sites. So what I'm saying is that sometimes a chest/back pain is just that.
Having said that, you should bring it up to you MO and get a scan just to make sure.
I had a PET/CT scan. I also had an MRI. Because I was recently diagnosed, that was just a routine follow up.
I agree with Dan that it’s unlikely that your discomfort is metastasis related, but nonetheless you should get it checked. I’m not sure about the connection between low PSA and scans. I’d imagine a bone scan would settle the issue. Or is it that insurance is not allowing?
I had a bone density scan a month or so back with no problems. I was told maybe wrongly that a bone scan wouldn't show anything at my low psa level. I'm continuing to ask the various doctors what's next if anything. I must confess that I've had a long history (going back 30 years) of depression and anxiety which, when I'm worried, manifests as joint pain, kind of what I believe is similar to fibromyalgia which I've treated it with duloxetine (Cymbalta). That's what this could be as well!
Bob, Congratulatins on the great results. The bone pain may be a result of chemo, are you getting nuelasta? That bone pain. Could easily be the. Result of chemo. Are you sitting a lt in the daytime, could be that too. That if you are on Nuelasta. It is recomended to do a claritan day. Before day of and day after when doing nuelasta.With. That psa, I seriously do not think it is the cancer.
My last scan was May 2017 when Psa was 2.3 and it found a femur met. So I am due but am concerned that with low Psa a scan will not illuminate a bone met.
The pain could be from my workouts and golf but I’ve read that PCa changes after a long time on ADT and some types grow without emitting Psa.
I’ve had pain from workouts and golf before but it’s seemed more muscular than this does particularly at night when trying to sleep.
My pain from mets is intermittent, but there is also an element of consistency over the longer term. It's easy to confuse that with muscle pain, in my experience as well as others I've talked to.
I remember before I started treatment thinking always that it was the muscles in my lower back that were "going out". I would often have muscle spasms which reinforced that idea. But then once I started treatment, my back never went out again, nor have I had those kinds of muscle spasms again. Most likely, in my case the bone mets were putting stress on the muscles.
At the time I made my decision to go with early chemo, the results of the recent trials for early Zytiga had not been completed. My only option for early additional treatment beyond primary ADT was Docetaxel chemotherapy. At first I was resistant to the idea, but after some research made the decision to do it after one month of ADT. Part of my decision process was whether I would regret my decision later. I concluded that I very well could regret not doing chemo, especially if I had a poor response to primary ADT whereas I would probably only regret doing chemo if it severely reduced my quality of life. And seeing how there would be 6 cycles, I could stop at any point if that was happening. I also asked myself if I would ever do chemotherapy, maybe when no other options were available. My answer was "yes" so I thought: why not do it now when there is a greater potential benefit.
So my answer is yes I would do it again. On chemotherapy my PSA reached it's lowest point of .19 and during chemo was only time I was completely pain free. It also looks like my response to primary ADT was in fact on the short side so I'm even more glad I did it.
Now that my PSA is slowly starting to rise, I will probably be starting Zytiga or Xtandi as second-line ADT. At this point, it looks like that could happen sometime around the middle of this year depending on how things go.
I also fear chemo and consider it rightly or wrongly a last resort . Apparently there’s no consensus re: the order of treatments which is why there are so many CTs in process to try to answer that question if indeed there is an answer. Since PCa is so heterogeneous one size probably will never fit all which kind of makes this process a crapshoot and therefore frustrating as heck! We all hope a silver bullet is out there; meanwhile we just keep truckin’ along!🤕
I would like to encourage you not to be afraid of chemo if you need it. Most of the people on this forum who've gone through it have tolerated the side effects well. That includes me. I was afraid of it at first like most people are, but after the first cycle was over and I knew what to expect, it was OK. It's not a picnic for sure, but not that bad either.
I was fairly active while on chemo. The first 4 or 5 days of each cycle I had to plan for low activity, but I was still functional. During the first week of the cycle, I was up and around, generally able to walk at least one mile a day. After the first week of each cycle, the second week was much better and I could pretty much do what I wanted to do. The third week was back to normal. Astronomy is my hobby and during one of my chemo cycles, I stayed up until 4 A.M. for 3 nights in a row without a problem. I was also able to climb a ladder all night to observe in my telescope. I was up later than almost everyone else and had lots of energy. I also noticed that I was feeling a little stronger at the end of each cycle than the previous one. It might sound strange, but I actually miss some of the aspects of chemo. It gave me a focus and immediate goals of getting through each cycle. I also felt like I was doing everything that I could, actively fighting the cancer. Some of the suffering felt redemptive. I knew the cancer was feeling it more than I was and I could really tell it was working. I'll do it again if I think it will be an effective treatment.
Bob, I would have some scans done ASAP to be sure it isn't the PC spreading. Better to be safe vs sorry.
My husband was feeling great last fall and getting into working out more. He then developed what he thought was 'just' sciatica - not unusual for someone who has cancer and recently had chemo. His blood test just a few weeks earlier showed his PSA was basically unchanged @ 0.10 from 0.09. The pain started worsening so he decided to see an orthopedic specialist who did an MRI - turned out to be the cancer came back and he's now CRPC, barely a year after being diagnosed with st 4.
I hope all is fine and whatever is causing your pain turns out to be something that isn't too concerning.
JLS
Here's some basics on bone metastasis and the pain from them:
Bone pain is often the first symptom of cancer that has spread to the bone. The pain may come and go at first. It tends to be worse at night and may get better with movement. Later on, it can become constant and may be worse during activity.
Thanks. Very helpful. I had planned to get another scan when/if Psa rose to a level where scan would be productive. So it appears that as a result of what could be the first pca symptoms I’ve experienced, I need to accelerate that process.
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