Hello all. I have recently seen an increase in some pain. I first noticed about 1.5 years ago. I had a small tender area just below my left pectoral muscle. Feels a bit like being poked hard by the erasure end of a pencil. I went and saw the doctor at that time and they ran many heart test on me. My heart seems to be in great shape. I would have an occasional spot show up over the last year and a half.
Recently for about the last month I have began to have the same tender areas show up on multiple areas on my torso as well as my back. Usually they would go away with a little bit of massage but sometimes it would take a little more work. They seem to happen in the evening when I am relaxing. I have talked to two oncologist that said they did not believe it was cancer related as I have very recent CT, Bone and PET scans. My primary doctor doesn’t know . I did start Xtandi in August so I am unsure if this could possibly be a side effect of that. So I am just throwing it out there to see if anybody else has experienced this and what it was and what they did about it. Any information on this would be appreciated.
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Eugmn
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I too am on Xtandi and it causes a number of discomforts / pains in my muscle masses .. did initially and still does to the point I can’t walk properly without a lot of discomfort. In recent times I get pains like you mention , they are in my skeletal muscles , front and back. If I lie down on a rib cage point, for example, the thin , flat , muscle mass there will hurt considerably. Strong stabbing pain. Same in hands , arms , back etc. . It will wear off but it hurts like heck . I’m getting cramps now too. Leg muscles, calf’s, rib cage muscles. I have a heavy oster hand massager that cleans up the cramps and sitting my hot jacuzzi with medical massaging jets works wonders too. My main pain solution is and has been opiate pain meds. I have Vicodin 10s for daily discomforts and for the stunning stabbing hard pains ( usually intermittent) I have dilaudid 4s that do an excellent job , they are quick acting but short lived. Without the opiates I would be wracked with incessant small pains.
in addition to my other post, there are anecdotal thoughts , out there, that say that the 8% - 12% of Xtandi users that have the most extreme SEs ( me ) … that they are more sensitive to the treatment than others with much milder SEs. The treatment generally lasts longer and produces the most positive - desired effects in these patients.
Sounds like you are closer the the stronger SEs than not…. But not yet in the realm of grinding harsh SEs. , like I have. When I was DXed, I was strongly encouraged to enter hospice at the time, due to my very rapidly deteriorating condition. I opted ( myself and my tear saturated wife ) to try at least “ one “ treatment before I started shopping for urns. Lupron Xtandi Zometa we’re decided upon. It’s 49 months later and I’m still here and feel like I have more time left as well ( albeit not very smooth conditions. )
In my case, I’m willing to endure the strong SEs ( you learn to adapt to them eventually) to remain alive with my wife and family. I haven’t regretted choosing this path yet … it’s been challenging quite a bit , but as my wife says “ worth it.
These are just my own observations and perspectives , and others are likely to have far different thoughts about all this. Yayahahahaya. Guess I’m saying that “ maybe “ those issues you are having “ might “ be good things after all. Finding ways to deal with those SEs and staying the course might be to your advantage. Once again, this is strictly IMHO and antidotal.
thank you so much for your information. I contacted my oncologist again and had a more thorough conversation and he believes this could be from the Xtandi. I have been lucky as I have been five years into this and have had relatively zero side effects with any treatment that I have taken. So as long as I know what I’m dealing with I am fine just handling it. It hasn’t gotten to the point yet of needing any additional meds
Read through the listed side effects on the packaging of all drugs your on.Sometimes something similar is hidden in list of side effects...
Hope it's just your body grumbling about the meds, or age????
I’ve been caring for my business partner, who in June hit six years with fully metastasized (throughout the skeletal system) prostate cancer. He did well on Zytiga with little side effects. But within a month of starting Xtandi he had full body arthralgia. He could not turn the door knob or hold a coffee cup. He had trouble walking or even getting up from a chair. Every joint in his body hurt.
We went to the half dose and he did better. But he’s been on it about a year now and it seems to have built up in his system. Right now diclofenac 75 mg twice a day is handling the joint pains. But we’re looking for a new treatment to get him off Xtandi completely as it’s now failing.
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