Quick personal update

but he certainly is intelligent enough to know what to do when he turns his computer off

David certainly is intelligent but he's also on a lot of very powerful medication.  he has already said that a broken bone was something that never crossed his mind.  when to do HT is not the question.  David has already said he will not do HT because it would rob him of his QOL.

it's difficult to sit by and watch someone suffer.  do we do more harm by interjecting our unwanted 2 cents or cosigning a plan of non-action?  i think you already know what i believe.

ed

BTW, David has me on ignore too.

 

Somebody said...
do we do more harm by interjecting our unwanted 2 cents or cosigning a plan of non-action?

I would certainly welcome differing opinions, I just am not sure if David has energy or patience for defending his actions or non-actions. I believe it takes an enormous amount of energy to even write a post, much less argue. I was ill once for 2 months and never once argued with my husband, :) I realized then it takes serious energy to argue. But I undestand that all of us here want to help...in our own way.

sc - why tooth extractions? curious, as sometime this year, afraid I will need to lose 2-3 teeth, been putting that off

sephie - I have no issues with you, your advice, etc, not a one. I know where you are coming from, and I know you have always cared. So please don't feel you have said or done anything wrong, you haven't.

casey - blood work has been done at almost every visit with my oncologist, even when we are bypassing a PSA by choice. doctor hasn't remarked about any particular reading as being troublesome to my knowledge. will have to dig some of them up and see how the main indicators are trending

sephie (p.s.) sorry, getting caught up here again. I only have 3 people in ignore, after being urged by mods for years to use this feature. I had always resisted, because I don't like censorship of any type. those that are in there, aren't in their because of any particular view, they are their because of attitude issues, and I feel its better for me and for HW, not to have get annoyed over nothing or be in a position to take the bait of those that like to bait. its that simple with me.

rick - thanks for the offer. still trying to work through that issue, that's something that has been going on with me for decades, I just don't do well on long car trips, its always been a struggle. they use to do 39 buck flights between Greenville and Charleston, and you could fly there in 45 minutes or less, but that carrier no longer works out of GSP.

spec lady - I am open to any advice or suggestions, that's never been a problem. in the end, I take it all under advisement, but when push comes to shove - I listen to the advice of my medical team - whom I consider the true professionals. I think most people do that here, nothing unique about that. and you are correct, there was a time here, when I was always being put on the defense, and I am past all that nonsense, I don't have to justify or defend any of my medical decisions, not going to happen any more. if you follow my long history of posting, I never, ever, tell anyone what to do, nor do I tell them they are wrong for following their doctors plans or advice. I share my experiences, my own advice if warranted in a non-dogmatic way, and here mostly to offer support and true empathy - still one of the main goals for which Peter established HW in the first place. Casey was correct above - we are also here for information, not advice in the form of telling someone what to do, or making offensive remarks if someone choose not to take said advice.

david

David,
I don't know the biology/mechanics behind the risk of jaw necrosis with the bone density drugs. The same risk applies to Zometa. From what I can tell, with a tooth extraction, there is some bone trauma and that it may not heal or it may start to degrade. There is a lot of material on the internet on the subject. If you think you may go on these types of bone density drugs, I would certainly have a thorough dental health update and do any extractions before starting something like Prolia. From my understanding, there is much less risk (maybe no risk?) for dental procedures that do not involve messing with the jaw such as fillings, teeth cleaning, crowns, etc. I certainly did not get as many warnings as 142 did when I started Prolia.
SC

My uro and GP are good about keeping me informed. When I went to the dentist, and explained the arrival of Prolia, he immediately put several flags in my record. He said that he had a lot of "elderly" folks (and I now fall into that group) who required special attention because of Prolia / Xgeva, and that the warnings were absolutely valid based on his experience. He was very concerned that I had been properly warned, and that I not obviously need any future dental work. He was ready to block it, but did not find reason to do that.

The deal is - Prolia / Xgeva shut down the agents which cut away old bone, and at the same time shut down the agents which build new bone. Over the years, that which is left becomes brittle, and at risk of breaking from the least provocation. That is why we are told to amp up the calcium. I'm also told to use vitamin K-2, which in theory facilitates use of calcium.

I'll forgo activity that puts my bones at risk. That's a fairly easy decision, since I'm not a rabid athlete to begin win.

"blood work has been done at almost every visit with my oncologist, even when we are bypassing a PSA by choice."

Just a note...An oncologist monitoring his patient for advanced and progressive prostate cancer will keep a PSA history of his patient. If a patient does not want to know the results of the PSA assay, he will track it and not tell the patient unless he has a reason to change protocol. But no qualified prostate cancer oncologist would ignore the PSA monitoring process by request for he would have no reasonable way of monitoring the patient. A patient CAN tell the doctor to not monitor his case.

David, don't take that as questioning your doctor, I'm just informing folks so that they are not misled.

Tony

David, Tony does make a good point here about monitoring PSA even if only so that the oncologist has a more complete record of your PCa. While I know that your situation and John's are vastly different, I can tell you that John's "regular" MD tests his PSA each year in spite of the fact that our urologist does this test twice a year. His feeling is "what the heck...I'm taking blood anyway and I want to have my own record of what the PSA is doing." Putting aside the cost factor (to the insurance company), this makes sense to me. As it turns out, our urologist uses the standard PSA test (<0.1), while the internal practitioner's lab uses a more sensitive test (John's last reading through him was 0.02).

I know that you have said before that your oncologist does not believe in treating a number (your PSA). Since your oncologist is experienced in treating advanced PCa, I'm wondering how he would know when to initiate treatment? Of course, if the patient and doctor have agreed to no further treatment, the PSA becomes moot in terms of treatment but it still would give the oncologist valuable information that they wouldn't otherwise have.

As to bone medications, after a certain point men and women lose bone mass...some more, some less. While John has not had a bone density test, he is not as tall as he once was so his doctor has advised daily calcium with vitamin D supplementation. Probably wouldn't hurt to check with your doctor about adding these important nutrients with supplements, especially since you cannot be physically active (which helps to strengthen bones) and don't get calcium in your diet.

Sephie,

See my response to Tony about the PSA question.

As far as some of the "bone" and "bone damage" issues brought up in this thread, I intend to incorporate the best of that advice and suggestions with my doctor, to make sure that has been compensated for in his thinking with me.

Plus, when I see the bladder expert, who also is considered a leading advanced PC doctor in Charleston in a couple of weeks, it will be interesting to see if he shares my oncologists opinion about things, and whether he feels I need to be doing anything different. It will give me a good second opinion.

david

Your signature, David, shows a PSA of 37.x as of last April. What was the October PSA, if you don't mind me asking?

Tony

David, I sure hope they can determine what the problem is and get it taken care of, The spasms and pain are terrible. Mine finally settled down after the 80 hour of hyperbaric. My bladder also is all fried up and they took a number of tumors out of the bladder but none were cancer. The hyperbaric has healed it and hopfully will stay that way as i can relate to what your experiancing. If they would have told me beforehand that this could happen I would never had radiation, I suspect it is just carelessness by the tec giving the radiation. best of luck to you!

johnr - for curiosity sake, when you had your radiation, was yours performed with a full or nearly full bladder each time? mine was done on a completely empty bladder with a suprapubic catheter in place.

bill - yeah, seen far more pain the past 2 1/2 years of my life than any I ever experienced in the service, lol. its one thing to experience level 8-10 pain for a short instance, like a tooth ache, or a sudden injury, but whole different thing when it become a day and night ordeal with no end in sight, or any real hopes of improvement. if it weren't for the pain meds I am on, there's no way I could endure this, let alone as long as it has been already.

Jim, welcome here.

You should really re-post your post, as a new thread, so that it doesn't get lost in my personal thread.

Wish you the best.

david

Dang! I missed all the action!     I think I mistakenly put myself on ignore.