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Posted 7/24/2018 1:35 PM (GMT 0)
Good morning everyone,
I had my oncology appointment yesterday. I am still seeing the nurse practitioner at most of my appointments. I have been doing so well there has been no need for me to see My doctor. At yesterday‘s appointment we discussed whethe orr not I should go back on Zometa, Adding a testosterone level test to my blood work, and whether or not I should go off treatment. Current studies have shown that a person should only be on Zometa for two years. After that, the medication tends to cause more harm than good. I was unaware of that until yesterday. Seeing as how I have been on Zometa for five years It was an easy decision to make. I will not be taking any biphosphonate For the foreseeable future. Adding a testosterone test my blood work was also an easy one. When we discussed going off treatment, we both agreed that it is something that I need to discuss with my doctor. My next appointment I will see the doctor and that will be on November 26. After the appointment I had my blood drawn and my Lupron shot and was able to get out of Portland before the bulk of the traffic hit. All in all it was a pretty good day. Last night all of my blood work came back and was mostly perfect. The only exceptions were potassium level and my red blood count which are both borderline low. My PSA came back at less than 0.01 again. My testosterone was less than 10.

No matter who my doctor has been each time I broach the subject of going off treatment it is almost always No. Every doctor has said that I am too high risk to go off treatment. I am hoping that November will be different. My PSA has been Undetectable for five years now. Although I understand the risks involved with going off treatment I also know there are risks involved with not going off treatment. I have been on Zytiga for almost 5 years now. I have been on the medication longer than almost anyone. In the back of my mind I cannot help but wonder what long-term use of this drug is doing to my body. It’s a crapshoot. I have been on androgen deprivation for 12 years. What is that doing to my body. I know in many ways the jury is still out as to whether intermittent treatment is as effective as long-term use but at this point in the game it is a risk I am willing to take. I do not believe the cancer will get out of control on intermittent therapy. Part of me wonders if it will come back at all.
Posted 7/24/2018 2:04 PM (GMT 0)
Todd, you continue to be an inspiration to many on this board, including me and your continued success on Zytiga is a testimonial to it's effectiveness. I am also on a three month regimen of Zometa together with Lupron and Zytiga but was unaware of the long term effects of Zometa. Something I need to discuss with my oncologist. Thanks for the heads up.
I sometimes wonder if I am actually cured and consider the idea of taking a vacation from treatment. Then the fear begins to set in and I ask myself "What if I have a recurrence during my vacation from treatment? Will it be more aggressive than before? If it is, will resuming treatment be able to get me back down to undetectable? Or, will it be too late?" So I stay the course and accept that this is a long term treatment and that despite all the changes it has caused, I am still alive and I am grateful for that.
Posted 7/24/2018 2:14 PM (GMT 0)
Thanks 10. I fixed the post to make it readable. Man Siri can sure mess up my dictation.
Posted 7/24/2018 2:16 PM (GMT 0)
Todd, you’ve got a tough decision to make with your doc. Maybe he will make it easy for you and say, yes, let’s try. Holiday for treatment and see what happens.
In any case, like so many decisions about this disease, there is no one right answer, except the one you feel is the right one for you.
Good luck at the next appointment. You are amazing. An anomaly, and a beast, being in treatment so long. May God continue to bless you.
Posted 7/24/2018 4:28 PM (GMT 0)
Todd-

Maybe this is something to discuss with your doctor:

https://pcnrv.blogspot.com/2016/09/testosterone-to-treat-prostate-cancer.html

It gives you frequent breaks in which you really feel good because your testosterone levels are high. about half the patients responded to it, half didn't and got worse. The ones who responded had higher PSA at the start, so it may not be ideal for you - just worth talking about.
Posted 7/24/2018 4:34 PM (GMT 0)
Todd, hope the doc comes up with something. you deserve a break.

Andrew
Posted 7/24/2018 4:58 PM (GMT 0)
Todd...as we say in Hawaii...chance em...not being flippant...what have you got to lose...you have it all...most folks may say that's nuts...but { I say the following as evidence of knowledge...not evidence of fame} I am not...nor are you...most people...fwiw...ps if truth be known..."most people are not most people"...another bit of logo non sense...that makes sense... its right there in the words themselves...hidden in pain (i'll keep that typo)sight...see...see...the only C word that walks the talk turn

Off for a brain...oops tooth implant...cheerio...
Posted 7/24/2018 5:16 PM (GMT 0)
Todd.. Thanks for the update and wish you the best in whatever decision you make!

Larrry
Posted 7/24/2018 6:23 PM (GMT 0)
You're my hero Todd, five years of ADT and I was whining about six months of Lupron.
Posted 7/24/2018 6:29 PM (GMT 0)
Todd, your journey and your thoughtful posts are inspirational. You set an example of patience and courage as you work through how toplay the hand you’ve been dealt.
Posted 7/24/2018 7:33 PM (GMT 0)
Prat thank you.

Allen. I have tossed BAT around a little with my Doctor. He is somewhat skeptical but said he would look into it. He is a devoted immunotherapy guy and spends most of his Time doing research. You have no doubt heard of him. Brenden Curti. He is the lead research guy in the OX trial.I have a lot of confidence in him but it is good to have the link. I will forward it to him.

Logo my good friend. I was Elected. I am not the norm it is true. Perhaps it is my 100% belief that Cancer cannot defeat me. Most often I feel bullet proof. I am dressed in the full armor. I have complete trust.

The rest of y’all, thank you so much. I know I am not often on the board but all of you are always in my thoughts or at least not far away.
Posted 7/24/2018 7:42 PM (GMT 0)
John, I have been on ADT for 12 years. Lupron for 11, Casodex for 2 and Zytiga for the last 5. I still and always will believe that the Provenge in 2012 is a large reason for my continuing victory
Posted 7/24/2018 7:44 PM (GMT 0)
Sky pilot. Just curious, are you a preacher. An old nickname I was thought long ago.
Posted 7/26/2018 2:51 PM (GMT 0)
Todd,
I log in almost every day, cant believe I missed the last two days and your post slipped to page 2 now. In any case it will be back on top now..far above the "penis bent" post ! lol.
First of, congratulations on the undetectable once again. I was expectantly waiting for those results. And bravo/congrats on the thought and message, and even thinking about pausing treatment for awhile.
You asked for opinions, so here is my non-scientific, non-clinical, non-study backed one, from the heart.
I see no reason not to take a break from Lupron, or even the Zometa, My Doctor felt the same as you have stated to take breaks on these meds, after 3 years on Lupron, I am an a nearly 2 year break. (still have the man boobs though) Also last year I had a 6 month break from Xgeva, as my Onc Doc stated the long term negative effects are not clear.

I too believe Provence may have changed your body chemistry for the better, I don't know if I saw any references by TA of long term effectiveness of Provence, but in your case, no clinical study applies as You is the clinical "bomb-buster" patient..as in you da bomb..you da man!!.

How do I phrase this, I feel Zytiga, for you, is your .."Ace in the hole", though we are definitely not playing poker here!. Again, the short term 'minor' side effects are very clear, as in I am soooo darn tired ..and my muscles ache..and memory clouds sometimes. But the long term effects are unclear. But just think, if they told you 5 years ago the major side effect 5 year down the road was 'Undetectable" wouldn't you have said Keep it coming?

I feel that way after 46 months, and I hope to be an elite long term Zytiga user. I believe the upside outweighs the downside, as long as you are Living the life with all the gusto that you have clearly demonstrated in you writing here and your blog site. So here's to many, many more years of having to decide..the long term effects!

Much love to you and your family , Bother Todd, and Peace be with ya'll
Wings of Eagles...and I dont use that term lightly!(I usually just sign off as Wings)
turn
Posted 7/26/2018 3:32 PM (GMT 0)
Hi Dan the Man,
Good to hear from you as well. Been working and playing and there never seems to be enough hours in the day. Mandy and Shayla went to a concert last night so I took advantage of the situation and watched Wonder Woman without interruption and then watched part of justice league. It’s good to be the king when the queen is away. I almost watched the notebook instead as I had a Lupron shot 2 days prior but I figured it would be better to exercise my testicular fortitude. Thanks for bringing my post to the top of the page again. Todd
Posted 7/26/2018 3:34 PM (GMT 0)
Hi Dan the Man,
Good to hear from you as well. Been working and playing and there never seems to be enough hours in the day. Mandy and Shayla went to a concert last night so I took advantage of the situation and watched Wonder Woman without interruption and then watched part of justice league. It’s good to be the king when the queen is away. I almost watched the notebook instead as I had a Lupron shot 2 days prior but I figured it would be better to exercise my testicular fortitude. Thanks for bringing my post to the top of the page again. Todd
Posted 7/26/2018 3:54 PM (GMT 0)
Todd -

It's so great to hear that you are in a position to be able to make this choice, that things are going well enough that such a choice is possible.

Another angle on this. I know you must have done this already, but surely you have sat down with your family to get their input on what the choice should be? No question Mandy wants what's best for you, but what have her thoughts and feelings been on this decision? Or your daughter's?

In any case, I'm certain you'll make the right call.
Posted 7/26/2018 4:03 PM (GMT 0)
Good morning Lieutenant ,
So good to hear from you. Mandy would love to see me go off treatment if my medical team will agree to it. Most likely they will not but it is worth a try. I hope you are well. We have been rather busy playing hard all summer. Life is good. I will have 138 hours on my 2 week paycheck next Friday. I guess I have been busy working hard as well.
Posted 7/26/2018 4:30 PM (GMT 0)
Todd,
I forgot to mention..about you seeing the Nurse Practitioner (bless them all) most of the time now, because you are "doing so well" . I arrived at that state after always seeing my Doctor for four years, I would arrive and my Doctor was in conference, or not available. The clinic receptionist would tell me my Doc was promoted to a manger Chief position/Position, attending symposiums, etc , but still "overseeing" my case each visit. I would see a team member, a Physician's Aide(bless them too) at the Cancer Center. I needed more, more answers to questions, more assurance, more than 12 minutes every four months. I needed more details and discussions about each one of blood tests. More face to face interaction. I grew frustrated, and decided to push the issue, and insisted on seeing only my Board Certified Medical Oncologist DOCTOR. After all, he is the head of my team, not the middle man! He relented and agreed to see me from now on. Maybe worth a try, just sayin.
Wings

Post Edited (Wings of Eagles) : 7/26/2018 10:34:44 AM (GMT-6)

Posted 7/26/2018 5:17 PM (GMT 0)

Todd1963 said...
.... I almost watched the notebook instead as I had a Lupron shot 2 days prior but I figured it would be better to exercise my testicular fortitude. Todd

Thank you for the laugh of the day, if not week. And you are my zero hero.
Posted 7/26/2018 5:34 PM (GMT 0)
Dan,
I don’t mind seeing the NP. Quite frankly, I don’t need her to answer any questions as I know more about this disease than she does. Also she is easy on the eyes and has a wonderful personality as well as a nice smile. She works closely with my Oncologist. It’s all good.


GoBucks. Glad to help
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