Quick personal update

  Purgatory said... why would you think my hip was broken? I haven't falling down or got injured, I would think I would know if that has happened. Not following the logic here. Men with metastatic prostate cancer (like you) need to give special care to their bones.   A “skeletal related event” (SRE) does not require a fall; a pathological fracture is very common.   The spine, pelvis, ribs, and bones of the arm and thigh are the most common sites if PC spreads to the bone.   Bone destruction is an important factor in the etiology of pain and other complications due to bone metastases.   Pain is the most common symptom of metastatic prostate cancer (including pinched nerves due to bone mets), although not all bone mets result in pain.   What are you taking for bone protection?

Hips- especially the head of the femur, can fracture from unequal muscle pulling.  Your recent, progressive, muscle loss could have caused a hairline fracture.  That is what happened to my m-i-l.  It was just a thought.  the dizziness is also a symptom of a hip fracture, along with the hip pain.  Small, hairline fractures don't always happen from falls or accidents.  Weakened bones, and unequal stress care major causes. 

 

worried - as with what casey wrote, never thought of this possibility from a "non injury"

Not saying this is you, but might really consider whats being said. My husband's unusual, but extreme pain in his arm, finally led to an orthopedist and x-ray. Instead of a muscle tear that 2 different Drs. suggested, it was a break - called a pathological break. That is how we discovered the mets. Again, not saying this is the case; but definitely needs to be taken seriously and checked out. Also my husband has been on Calcium and Vitamin D for a little while, at oncologists suggestion. Just take care David.

David, was dismayed to read of your increased pain after PT yesterday...but am glad that some here have suggested possible hip problems. As others have said, if in fact your PCa has metasticized, it is likely in your bones. Hip fractures can also be caused by bone weakened from tumor or infection, a problem called a pathologic fracture.

I was further dismayed to read that no PET scan has been done yet since this is something that was talked about a while ago and might just provide some valuable information.

David, I'm gonna be brutally honest here in my opinion. Your doctors suspect metastatic prostate cancer. The evidence (rising PSA after surgery and SRT and cachexia coupled with severe bone/nerve pain) seems to confirm this. You are on prescription pain meds for a long time with no treatment plan, and your doctor has stated that your pain meds will likely need to be increased in the future. Your doctor has said that he doesn't believe in treating a number (your PSA); my question is what is he treating other than pain? To me, this sounds more like hospice care rather than medical treatment.

Sorry for the brutal honesty here, David, but you know I come from a place where your well-being (physically and emotionally) are my only concern.

Sephie:

I have a question for you. I wanted to send you an email, but I can't. If possible, can you email me.

On other matters, your latest post is 100% right on.

I think SUPPORT also means telling the truth and giving advice as best we can, even if it is advice the recipient does not want to hear.

Mel

Reachout, I truly hope you are correct. And, of course, you are right in that we shouldn't jump to conclusions. I'm just worried sick about David and what he's going through, and truly hope that I haven't hurt his feelings any. David, you know I love you, right?

David,

The posts on the risks of bone weakness / breaks are very serious, and you should consider them. Even if you don't read the post from Mel, his point is real.

I am developing osteoporosis by the day. Part is a result of HT, but it was identified by a DEXA scan before I started HT (that is why they put me on Prolia, same as Xgeva). I have a number of "suspicious" spots in my spine. The oncologist suspects PCa mets, but the tools we have access to with my medical coverage can't confirm that. What I do see is that I am getting shorter due to compression in my spine (literally, at the rate of about one-half inch every six months). It is painful, and very real. I strongly suspect that your issues with weight and eating could be factors in your pain. The body takes nutrients from wherever it can find them, and fat goes last.

Please do not assume that we are against you, but you make it hard to try to help some days.

142:

you just said:

"Please do not assume that we are against you, but you make it hard to try to help some days"

Why in the world would you say that to me? I find that to be offensive. I haven't said or felt anyone was against me?? Been taking in all the comments and advice in stride, and planning on acting on some of it with my doctor. Some of what has been said was news to me, never had thought about those aspects.

Please don't paint me into some negative corner which doesn't exist. Obviously I can't respond to someone's post whom I have in "ignore", so not responding only means I am not seeing what an "ignored" poster is saying.

No one is against me, lol. I am not into paranorai or conspiracy theories, I dwell in reality only.

david

A response to Mel's question to 142 regarding Prolia:
I am on Prolia. The actual drug name is denosumab. (Same drug that is in Xgeva). Prolia is a 6 month needle injection. I have no SEs. One needs to avoid having tooth extractions while on it and to make sure blood calcium levels remain normal.
SC

David, you have been seeing a variety of doctors regularly and frequently.  I can't imagine that they are not doing CBCs every time they see you.  Hopefully you are also keeping your own records.  How's your red blood cell level been holding?  And how about calcium from your basic metabolic panel tests?  These are important indicators.   [added later as an edit] I suppose it would be beneficial to say why I ask about red blood cell counts… Pain is often the very first sign of bone metastasis; often before it is clearly visible on standard skeletal scintigraphy.   (PET scans have better detailed resolution, but they are very expensive…not sure they even have them in South Carolina).   Someone with the clear signs of mets (progressing PSA after prostatectomy plus salvage radiation therapy) is advised to watch closely for the indications of bone metastasis because a pathological fracture can be a “dismal burden on a patient.” Not everyone has every side effect of bone mets, but the list of other indicators include loss of appetite, nausea, thirst, constipation, tiredness, confusion, numbness or weakness in the legs or numbness in the abdomen.   The fatigue-related symptoms can be caused by anemia, which is monitored through the red blood cell count.   Unfortunately, androgen deprivation (both chemical and surgical) contributes to more anemia, which is why men castrated or treated with ADT have to watch their blood counts even more closely. Blood in the urine, or hematuria, can also contribute to anemia in men with advanced PC.   Hematuria has many possible sources, included bladder cancer or growth of metastatic deposits within the wall of the bladder. This is why men with advanced PC need to closely monitor and stay on top of their red blood cell count trends…       Post Edited (Casey59) : 1/24/2013 2:56:37 PM (GMT-7)

David:

I am very concerned about your situation. I know you are on some heavy duty pain killers and I am willing to give you some slack and ignore some of your comments. But, enough is enough.

You seem to relish commenting that you have people on the IGNORE list. You have mentioned that about a dozen times in the last month or so, it seems. You keep mentioning me by name as being on your IGNORE list. People are saying the same things in this thread that I have been saying to you for awhile. But, back to your vaunted IGNORE list.

First of all, anyone can put someone on Ignore. I've never done that, but if I did, then I certainly wouldn't wear it as a badge of honor. IF YOU WANT TO IGNORE SOMEONE, THEN IGNORE SOMEONE. No need to reference it time and again. Grow up. It is not necessary or even seemly to mention it all the time. Additionally, you know darn well you can read my posts if someone mentions it. Just un-IGNORE, read the posts, then IGNORE. How silly to say you CAN'T read my posts.

If you ask for advice -- and when you post about symptoms you are automatically asking for advice/support -- then expect to get it. The advice may not be what you want to hear.

People are concerned about you and offering good suggestions. It was mentioned that people are not against you, but trying to help. Why was this mentioned? Because, frankly, at times one is walking on eggs knowing full well you take offense at ...being frank again...NOTHING. Instead of taking offense, please consider what we are saying. The concern is that you are experiencing a skeletal event due to the PC. I do hope you and your team aggressively pursue this issue.

Mel

I think we are all concerned about David, and feel the urge to "fix" his problems due to their severity, but we forget that he has many doctors around him helping (just look at his plan for the next few weeks). No one knows his medical situation better than his doctors. He has had a complicated medical history, and his pain may not be from metastatic PC, as most here are assuming. I still support his view that there is no evidence that starting HT before the (visible) evidence of metastasis has a better overall survival rate. This is also supported by Dr.Walsh in his PC bible: "There was no difference in survival between the men who started HT late and the men who had been on it all along" (page 473) It is another thing if you want to actively trace and treat the affected lymph nodes, for example, with radiation. From what I can tell, this is not David´s intention.

We can give advice, opinion, in order for him to get another viewpoint, insight, which may help him coordinate with his doctors, but he certainly is intelligent enough to know what to do when he turns his computer off. David is in pain and he needs all the positive energy he can get.