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Today's visit with my Oncologist

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Posted 1/12/2012 3:15 AM (GMT 0)
Thanks BD,and bill, you are quite right about doctors that care
Posted 1/12/2012 5:03 AM (GMT 0)
David, I wish you all the best with your treatment plan. No one knows what you are really going through but you and to a certain extent, your doctors. We are very much on the sidelines.

The reactions here may seem offensive to you but that is because most of the literature on prostrate cancer for 3+4 cancer leans towards srt if surgery fails and if that fails ht or some variation of this. Not many articles, people on this website tend to do it any other way leading people to believe that perhaps you have chosen a doctor with non mainstream views and that you have not been given options with the best possible outcomes. Also your views on HT may lead a person to believe that somehow your views are understood by your doctors and they are giving this too much weight when offering you suggestions on what to do next.

I think that there are things wrong with the above way of thinking:
1. You are in chronic pain with the failed srt and therefore the "standard plan" goes out of the window.
2. There is no "standard plan" for a cancer that is as aggressive as yours
3. Logically, chemo works with fast growing cancer cells so why shouldn't they work on yours.
4. With your vast knowledge of prostate cancer and cancer in general you are in the best position to spot a dud doctor and you think that your doctor is on the ball so he must be.
5. Your doctor doesn't want you to do HT and neither do you, that's a happy coincidence. I am sure if he thought that HT was of benefit he would have told you.

I wish you the best in your choices and it seems from reading your posts that the pain is more under control. I am happy to hear that.

Regards,
An
Posted 1/12/2012 5:22 AM (GMT 0)
Hi David, sounds like a good report.

As far as the nerve damage, my dad suffered from nerve damage due radiation too. He ended up with neuropathy in legs, bowel problems and some other issues and some pain too. His radiation treatment was back in the late 90's.
Posted 1/12/2012 12:43 PM (GMT 0)
David,

great to see yourname back on the forum again.  I was looking for you last week when i was under so much rpessure coming up to my final radiotherapy treatment.  I just dont know what came over me but i was so afraid of what i would hear on my final day and lo and behold i heard nothing really  - only to return in three months time.

You ahve been my saviour since last May and i have depended on your emotional support even more than the physical advice and concerns highlighted over the months by me. 

I want you to know that it is my turn to think of supportin gyou through 2012 so that you have a 'goodish' year and knowing you you will make the very best of it.

Obivously you have lots of idols on this and its so heartning to see the support that is here for you, me and everybody else that is lucky enough to have found the site.

Reflecting on your journey makes me feel that i am right wimp and unable to cope at times with the side effects of the treatment that i have just completed.  However, i am ready to journey on and find even more spare time on my hands now to tune into healing well on a daily basis.#

Happy New Year to you and your family and friends cool

CJD

Posted 1/12/2012 12:59 PM (GMT 0)
Hi Brother

Having a doctor you trust, who listens to and address's your concerns and who is going to stay in ongoing contact with you - Priceless!

I'm looking forward to you other thread on the "Why Delay", I believe in my specific case the treatment plan I'm on makes the most sense. However I am not adverse at all on going to my medical team and asking 'well if we try X Y Z', so far my medical team has addressed my questions and I'm confident we are doing the right thing.

See you in Baton Rouge! MsWorryWort has some nice roadkill she will be adding to Cajun Jeff's menu.

Bud
Posted 1/12/2012 9:24 PM (GMT 0)
An - many of your numbered points are quite correct. Based on my stats, I shouldn't be in this situation, but it is what it is. I read along time ago, that there is a danger in Gleason 7's, because they can vary so much. The best explanation from all my doctors, is that I am dealing with a very aggressive variant, that is bent on doing whatever it wants to do, despite treatments.
Cancer doesn't always go by the book, and they are often not predictable by the normal standards. Yes, if my doctor thought that HT would be appropriate right now, he would be suggesting it. We have spent a lot of time talking about the next potential step of treatment. He is opposed to the use of HT for me (regardless of what I feel - can't seem to get my distractors here clear on that point), and he is only considering the use of Chemo as a "shock treatment" in the future, no decision has been made. He feels I am still safe at this point, where as a team, we are waiting and watching, and planning ahead. It's funny to men, you got some here that really get push about AS for men, yet that is all that is going on here, it's AS after failed primary and seconardy treatments. Nothing is going to cure the cancer at this point, neither HT nor Chemo, so that "gun" so to speak, should only be used for my best advantage. That decision, is in the hands of my doctor, whom I have complete faith.
Posted 1/12/2012 9:30 PM (GMT 0)
squirm - i feel for you dad, as from what my doctor tells me, such kind of nerve damage is usually never fixable. I am only a bit over 2 years into my damage, so I know I got a ways to go. my best to him, hope they keep him comfortable from pain.

cjd - the best highlight for me out of the year 2011, was it was the first time in 4 years, that no one got to operate on me, lol, so that was a blessing in itself. thanks for your post.

bud - seeing how there is such negativity here at HW if anyone deals to present an opinion different from the flock, having second thoughts about making that thread. I know the "experts", who are not doctors, will jump all over it. My doctor even has a strong opinion of "on-line" experts - don't listen to them!! lol. I may go for it anyway and take my chances.

david in sc
Posted 1/12/2012 9:51 PM (GMT 0)
David,

I'm pleased to read of the latest visit with your Oncologist. It seems to me that the pain control is improving, and as I've mentioned to you before in a post, your Doctor is top notch and together you make a great team.

I'm not making light of what you have to deal with, but do you see it as a bit like a chess match and you're looking for the, "Checkmate". :-)

Chris.
Posted 1/12/2012 11:22 PM (GMT 0)
Chris, that's a pretty good analogy about the chess game. In many ways, all of our PC journey's mock the game. You try to think ahead a few moves, you have to be willing to change your mind, regroup, and try again.

I am a big believer in the teamwork approach with doctors. Not everyone is fortunate enough to have the kinds of doctors that communicate well, or are playing some kind of ego trip (I'm the doctor, you are the patient - now shut up). My oncologist has mentioned, that he is always learning, always studying every study that comes to surface, comparing notes with his peers, etc. He's on top of all the meds that are out there, as well as the ones coming down the pike. He's expecting great advances in the coming years for dealing with both prostate cancer and breast cancer. May not help some of us in this generation of patients, but its encouraging to know that there may be better choices for those that enter our ranks later on.

On the patient side, it is still the patient's primary responsibilty to be pro-active for their own body and ailments. Doctors, not even the finest, are mind readers. They need the patient to be able to communicate openly and to articulate their feelings, etc.
It makes the doctor's job a whole lot easier.

With this level of pain managment that I am undergoing, only I know, on any given day, exactly how I am physically and mentally feeling - the doctor can't help me properly, unless I communicate properly. Fortunately, on yesterday's visit, I was having a "bad" day, and was glad that the doctor was seeing me at my worse, on other visits, I was having a more pain controlled day. So it made it much easier for him to understand what I was going through, and how to make the needed adjustments to the meds. The doctor, his personal nurse, and I the patient, sat down together and compared notes, which really helped.

Thanks,

David in SC
Posted 1/13/2012 12:03 AM (GMT 0)
David,

The chess reference was indeed spot on re your struggles. Your focus and tenacity are inspirational. Every pawn that you eliminate opens a new path. I wish you best of luck.

Jim
Posted 1/13/2012 1:49 AM (GMT 0)
Thanks, Jim

Playing a real old fashioned game on non-computerized chess is still a big deal to me. It's getting hard to find
people that will take the time to play a game of chess.

My older brother and I both were playing in champion chess matches while in high school. A few years ago, I met this
really cool retired German aircraft engineer that I would play chess with weekly at a local German resturant. He
was very, very, very good, though in his 80's at the time. I never could beat him, but it was ok, I learned a different
level of strategy playing against him. He has since died, and I have never had a good player at the game since.

Yes, our medical decision can relate in a manner to a good chess move. And trust me, our enemy, PC, is a skilful and evil player at the game. Have to really stay on your toes, and hope your last move isn't your last move.

Thanks,

David
Posted 1/13/2012 4:59 AM (GMT 0)
David:

Is your doctor quite sure that your pain is SOLELY due to the nerve damage and that it is NOT due to the actual cancer being in the bones?

In a sense that would be good news as it means that cancer is not quite that far advanced.

(In another sense, it does mean as you said that future cancer tx. will not help the bone/spine/back pain).

Having had a some pain and seen my father in severe pain, I can attest that pain management is so crucial. I applaud your doctor for dealing with it in an aggressive manner. Have you gone to the higher dosage fentanyl patches?

Mel

Posted 1/13/2012 5:04 AM (GMT 0)
Mel,

My doctor is positive to the root cause of the pain. So much, that I asked him if was willing to put a report together in writing, for legal purposes, testifying to that effect. He said he would do so upon my request. My uro/surgeon is still willing to state the same thing.

Yes, been on the 50 micro gram fentanyl patch now for 36 hours, and has made a noticable difference in pain level, without generating any negative side effects, so I know we are on the right track. If it works well, I will be able to reduce the amount of break-through pain meds that I have been taking, which will be a good thing.

david
Posted 1/14/2012 9:10 AM (GMT 0)
David, I am very happy that you have found the right doctor that really cares about you (as a patient) and wants the best treatment for you.  I have sometimes felt Ron could have had a better doctor for certain diseases.   How horrible to be dealing with the issue of aggressive cancer and unbearable pain.  I hope the 50 micro gram fentanyl patch continues to make a difference for you.   Wishing you the very best in the coming year!

Hugs,

Aimzee 

Posted 1/14/2012 3:12 PM (GMT 0)
Thanks, Aimzee

Those kind of doctors are the rare ones. Most have the skills required, of course, but when you get one with the right people skills and true empathy toward their paitents, that's a good combination. Since my oncologist only deals with advanced breast cancer and prostate cases, he is use to having patients with severe pain issues, one reason he is a certified pain specialist. He was exactly what was needed.

My first 3 days on the 50 patches has already shown improvement. Just swtiched out patches an hour ago, so will see how the 2nd round goes. Its already improving my sleep, my ability to nap, and I don't feel like I am edge all the time from the pain.

Its a good improvement.

My best to you and Ron.

David
Posted 1/14/2012 3:58 PM (GMT 0)
David,

Thanks for the update. I have no personal experience in these matters, so I'll spare you my uninformed opinion, except to say that it sounds to me like you're approaching this in a smart and balanced way, and it sounds to me like you've got a terrific doc. I wish you all the best.

Hang in there and be well. And as maddening as this all is, try not to lose your sense of humor.

Jonathan
Posted 1/14/2012 9:22 PM (GMT 0)
thanks, jonathan, hope you are still faring well yourself.

yes, this is all about finding the perfect balance. on the pain front, its finding the right mix and the right dose. too much is not good, too little proves nothing. right now, its more promising than it has been in the past 2 1/2 years, so that is encouraging me. when i lose my sense of humor, or if i seem tense or on edge, its always because the pain was gnawing away at me endlessly. i don't like feeling that way. my normal mode is to be chilled at all times, but that's hard to pull off constantly if one is aching away.

even on the cancer side, my doc and i are doing a form of AS, another balancing act. we know the cancer is on the rise, and we know that either ht or chemo could buy some time, but my doctor feels strongly that right now, is not the time to pull the trigger on either of the future treatments. i am comfortable with that decision. when the time is right, i am prepared to do whatever the doctor is reccomending at that time. in the mean time, with no physical evidence of mets, i am happy to maintain my quality of life for as long as possible. of course, its never going to be like in my pre- PC days, but I will take what I can get.

my best to you,

david

p.s.   consider all opinions here of equal value, so your's are just as informed as mine or the next guy, fire away!

Post Edited (Purgatory) : 1/15/2012 11:11:01 AM (GMT-7)

Posted 1/15/2012 12:04 AM (GMT 0)
David it looks like you are in good hands, which pleases me very much.

All the best.

Mal.
Posted 1/15/2012 12:41 AM (GMT 0)
Mal, thanks my friend, I feel in very knowlegable and safe hands. Can't ask for anymore than this at this juncture.
My best to you!

david
Posted 1/15/2012 4:59 PM (GMT 0)
David,

Pain patches still doing OK? Watching more football today?

DJ
Posted 1/15/2012 6:13 PM (GMT 0)
Thanks, DJ

on my 5th day now of the 50 micro gram fentanyl patches, has made such a huge difference, already been able to cut back on the amount of the loratabs (for breakthrough pain), sleep has improved (which is a miracle for me), and i am not feeling on edge all the time like i am accustomed to. the doc finally got me dialed into the right mix of meds, for that i am thankful

on the football, yes and yes, will watch all of both playoff games. need houston to pull the upset, and will be rooting for the packers (i detest the giants only second to the jets)

david
Posted 1/17/2012 12:56 AM (GMT 0)
David, I am so happy the patches are helping.  That is good news.  Ron wanted Green Bay to win.  He grew up around the Menominee/Marinette are.  He is a sports addict!

Take care!

HUgs,

Aimzee

Posted 1/17/2012 1:20 AM (GMT 0)
David,

Very happy to hear that the new patches are working. It should be great to get off those Loratabs. I took a lot of Loratabs after my rotary cuff surgery last August and there is no question but that they change the way you feel, and not for the better. And in fact gave me very little pain relief.

Sorry, just can not get into any more football after LSU and the N. O. Saints both lost.

San Carlos
Posted 1/17/2012 2:14 AM (GMT 0)
Sancarlos,

Thanks. In just 6 days on the higher patch, my Loratab intake has been cut in half. That was the goal. My sleep has been greatly improved (lifetime insomniac from a family of bad sleepers), and now when I nap, I actually go to sleep - which is most unsual for me. I hear a lot of bad rap about Loratabs, seems like there are lots of people that don't tolerate them at all, or they make them sick, or they get very constipated from them. I have been fortunate that I have had none of the negatives from being on them. I have been on a steady use of them since July of 2009 without any break. They are just as effective now, as when I first was put on them. Different drugs are tolerated in different ways by people. Even my doctor was concerned about possible negative side effects, but hey never have happened.

They don't alter my mood or feelings, or seem to dampen my ability to think clearly. This I know from some of the limited, but very complex foresnic accounting work that I still engage in from time to time.

The big difference I am seeing the higher dose fentadyl, is that it is doing a really good job of cutting the worse of the pain, and I no longer feel on edge from the pain all the time, which is a big relief to me. I now simply don't feel like I am hurting all the time, which is a good thing. I wish the root cause of the pain could be fixed, but all the doctors are saying that is not ever likely to change, so I have adjusted my mindset to accepting this as my reality in life. Nothing I could have contemplated even 3 years ago or so when I started this so called PC journey. But such it is.

With my Patriots on top of their game, I am in NFL heaven right now. Now we are off to take out the Ravens, then hopefully off to the Superbowl. I would rather we play the Niners, but have a feeling it will be the Giants for another epic battle in Indianapolis.

The season makes a good distraction for me, so not I have to prepare for NFL withdrawal, lol for a few months.

Hope you continue to hold your own,

David
Posted 1/17/2012 2:19 AM (GMT 0)
Glad the patch is helping you out. I wish in spite of your feelings about some of the "experts" you'd post the details of the conversation you had with your oncologist. Let the detractors detract, but I'd be interested to read the details just for the sake of the info he shared with you and about PCa...
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