A recap of today's Oncologist visit

A recap of today’s Oncologist Visit, it lasted a full hour They drew 2 tubes of blood for the PSA and other bloodwork, they will call with results tomorrow on the PSA He is going to find me a higher level urologist from a medical university in the area, to go over my entire PC and medical files for the past 4 plus years, to get a 2 nd opinion of what is going on, in particular, my still ongoing bladder spasms, which he agreed, should not be happening with a non-functional bladder He is setting up an appointment with a higher level gastro doctor in Spartanburg.   He was not happy with the other gastro’s lack of interest in getting to the bottom of my appetite/cramping/weight loss issues.   He said the answer “I don’t know” was not acceptable or professional.   He said there are some gastro doctors that are just scope technicians, and won’t think beyond scoping.   He said all that I got out of   that, was finding and removing the polyps from my colon. He then dictated a letter I needed to send to the VA county office, so that they can expidite my now 3 year old claim with the VA for Agent Orange related Prostate Cancer.   In the letter, he spelled out that I now have metalizing prostate cancer, which is no longer curable.   It was a bit hard hearing the “M” word. He reminded me, that in cases of prostate cancer where both primary and secondary treatments failed fast, that they are the most difficult cases of PC to deal with.   He said the cancer could be anywhere and everywhere in my body.   Said it’s much more predictable and easier to treat, if it takes the normal route of showing up in either the bones or lymph nodes, which he does not feel is the case for me.   In those cases, there are known treatments and remedies that could help. He said after a couple more PSA tests, he may decide to go ahead and attempt a few rounds of Taxotere to see if it will slow down the progression. He’s concerned with the overall level of pain that I have, despite the pain meds.   He said my case has an unusually high level of cancer related pain, and for the first time, admitted that it may be much more difficult to control the pain properly as the cancer progresses.   He did not recommend any changes to my pain meds right now, choosing to reserve the higher doses of Fentanyl for the future, to make sure that there are still some pain tools to use in the future, without over drugging me currently.   I agree.   Told him I did not want to be over-medicated at this juncture, to where I felt too drugged up to be functional.   So the trade off, is I have to suck up some of the existing pain, and work with the doses that are on the table right now. He did put me on Lexapro   (finally went as a generic).   But not for the primary purpose of depression.   He said that since most of my cancer pain is nerve related at this point, it might help with the pain control, by calming down some of the nerve bundles that are being affected.   Said it won’t hurt to try for a few months.   That way he won’t have to up any of my pain meds right now. Also, at the last minute, decided to test me for Celiac disorder, so they drew 2 more tubes of blood for that, to see if that   He said a lot of my symptoms mimic Celiac.   And he was surprised that the gastro doctor didn’t simply test for it.   He said that trauma to the body could easily cause it to onset, especially as an older adult. Finally, he wants to keep a closer eye on me, so he’s having me see him every two months from now on, instead of every three months.   Said he would call me in two weeks to see how I was doing.   That’s all that comes to mind, will add more later if I remember more.   I thought it was a very good and thorough visit.   He gives me a great sense of confidence and trust. David in SC            

Hey David,

Thanks for the update. Several thoughts (and some may be repeating SB, haven't read everything yet, lol):

--I'm glad the doctor is being aggressive - especially re: the weight loss/appetite/etc. I agree that "I don't know" isn't an acceptable answer at this point. I'm also glad that you feel confidence in your doctor - that is SO important w/ all you have going on....

--My heart aches that it's now to the "M"-cancer point. I will continue to pray that the progression can be slowed by some of these meds, etc.

--Lastly, I do completely disagree about his pain-control position, though. I only say that because I want to see your pain controlled. I absolutely know you don't want to be "drugged up"... but, really, the meds you are on (for what you are going through) "aren't" really that high. To put things in perspective, the fentanyl patch can go WAY up in the future. But, as I said in my post to you yesterday, there are so many meds for breakthrough pain - that could help you when the pain is bad. You could use those only when things are severe.

But I hate to hear you say that you have to "suck up the extra pain". I understand the sentiment behind it, I do... but pain affects so many systems of our body....

Anyway.... lol - I just now finished Snowbunny's post, who essentially said the same thing re: the pain meds. Obviously, at the end of the day, you have to make the right choice for you - and we'll support you whatever that choice is. But we all here would obviously like to see you have better pain control - especially considering all you have on your plate.

Other than that, I'm glad things went well and he's being aggressive w/ everything. Let us know as you find other things out - and, once again, I continue to hold you in my prayers.

--Tina

yes, i meant metastatic, was typing too fast, lol, trying to get an update out real fast.

i know there are stronger pain meds out there, but as this cancer progresses and starts to spread more, i will need the full arsenel of other pain meds to turn to. my doctor feels i have very high levels of pain associated with the cancer and cancer treatments, much higher than most of his other cancer patients. its all about a balancing act, and we both agreed - there is no realistic goal of eliminating 100% of the pain, 100% of the time. its all about a trade off, when debating QOL issues. he said he could send me to an independent PM, but he's afraid they wouldn't understand the uniqueness of my case and the nuances of my type of cancer. he is a qualified and proper PM himself, as related to cancer patients.

he tried me on other meds, such as dilaudid and oxy, but neither of them worked as well as the loratabs. i am very well opiat tolerant, and dont' have any of the normal side effects associated with long term use (so far at least).

i think some of you are reading too much into the "sucking it up part". what is meant, as the cancer continues to escalate and spread, its going to cause even more severe pain, he is saying i have a severe amount of cancer pain for this point in time, he has to make sure that i haven't maxxed out certain meds way in advance of when things will be getting much worse. kind of scary thinking about dealing with pain many times worse than what i already suffer with. he didn't mean it in a negative way, was just being practical for the future. the cancer is never going to go away, its already spreading and growing everyday, there is no way to stop it. it can be slowed down with hormone therapy for a few months, but that comes at a high cost of very poor quality of life, or he can stun it with a few doses of chemo, which may take place early next year if the number keeps rising.

he's been pretty good about adjusting meds and trying meds, i dont want to come across to him as a drug seeker in anyway, its not many doctors that are as open and liberal as he has been with me with pain meds, i think that is a balancing act too.

thanks for everyone's care and concern

david

Hi David Thanks for the update. My prayers are with you buddy. I understand the meds. If you're having severe pain already, then you want to be careful. Especially if you have already tried some meds, and they didn't work.

Please keep us updated my friend, because you know we really do care.

love and hugs
Loretta

David,
Sounds like you have a good pc doctor. Keep us posted on the bloodwork results.
Many prayers are with you and your family. We are all concerned and care about you.
[[[[[[[Hugz)))))))))))

David, I don't know you but am sorry to learn of your ongoing problem. My reason for butting in is to ask if you have filed for Social Security Disability. If you have not, because of your CA metastizing, you should automatically qualify.

ides - have been on social security disability for about 16 months now. got fully approved and on perm. status thanks though.

whitebeard - my oncol only deals with advanced breast cancer and advanced prostate cancer patients, so he is well versed that many of his patients won't make it. he;s all about QOL aspects with me, and has been that way from the start. he knows there is little we can do about the cancer itself, but he wants to keep me as pain free but functional, for as long as possible. at some point when the cancer progresses further and quicker, there will be less options. i am thankful that he is buying me some quality time compared to how things could be without his intervention.

i am very much into the concept of hospice care, especially home hospice, one day when that is needed, i am ready to be involved with that decision, along with my wife of course.

thank you for all your care and support, it means a lot to me

david

Hello David, I really don't know what i can say that hasn't already been said other than i will continue to pray for you and your family.

about hospice, i had a friend's uncle recently pass away from cancer (i don't know exactly what it was) but he went into hospice with the 2-3 months max to live, he couldn't walk, he couldn't bathe himself, and he was almost kicked out because those 3 months turned into 3 years. I do know one of the things he used was MJ. No, its not legal in my state for medicinal purposes yet, but his family didn't care about that. He actually gained about 30 pounds in that time frame. I guess my point is, that it could be something to consider.

I'm so sorry you have to face such hardships and to undergo such painful things right now.  I wish there were a way to change what has happened to you, but I have no answers and no words to express the sadness I feel for you and your family at this time.  I do not wish to imply that you are giving up in any way, but that you are having to suffer hardships that are so difficult.  You and your family must be struggling in so many ways right now.

I am so proud that you and your wife were able to take that cruise you wanted and that you were able to enjoy the time you were on vacation. 

I pray you will find the answers with this doctor.  He seems to be in medicine for all of the right reasons and i now if anyone can help you find a way to heal yourself then he can.

God bless my friend.

got some catching up here to do i see:

splash - i am a long way from needing hospice at this point, but will eventually, and i am a big believer in the concept of them for sure

also - thanks for your words and advice

becky, thanks, you sound like you are a lot more in rough shape than me at the moment, my best to you

retired - thanks, my family has held up well over the years with my cancers and treatments, fortunately, all my children all well over adult age, and each of them deals with it in their own way. only my oldest son shows signs of denialism with me, he simply doesnt want to know anything, the others, are always checking on me and wanting detailed updates.

babara - to be honest, my cancer has been spreading already for over 4 years. had my original surgery, which failed, in oct 2008, i had one low reading 3 months after surgery, and ever since then, it has constantly kept going up and up, very rapidly the past year in particular. based on what my dr says, and the fact that i am already 4 years into this battle, i probably have 2 to 3 years left before this thing gets me. its only a question of time until it metasasizes into my bones and/or organs. there is already suspicions of the cancer spreading into my non functional bladder, and right now, there is no safe surgical way to go inside my bladder to check.
----------------------------
UPDATE

didnt get my PSA results today as hoped, perhaps tommorw

did get an appt with the new gastro dr, it will be nov 15, had my doc not intervened, it would have been late dec or early jan, he said his patient couldnt wait that long, so they moved up the appt

Hi David,

Thanks for the update! I'm hoping and praying for you that the lexapro will help, and that the new GI doc will be able to come up with some answers and solutions for you! Hopefully I will be able to write you a bit more of a reply tomorrow, but my eyes are shot, and I'm fading fast. Nevertheless, I wanted to check in quickly and let you know that I'm thinking of you! Feel better!

Skeye

Just wanted to say to PLEASE check with the Pharmacist before you cut the Lexapro. There are many of these types of meds that are not meant to be split so verify this first as it may be formulated differently then when you took it years ago.

The symptoms you are having are quite standard for taking this med, especially as you mentioned, mixed with Fentanyl and Lortab pain medications. Many times the symptoms subside within a month or so.

Post Edited (Snowbunny21) : 10/26/2012 3:46:02 PM (GMT-6)

David
Have you scheduled your new GI Doc yet?
Hope this new GI Doc can offer you up some help....
Prayers, thinking of you.