I'm new and very scared - UPDATE {10/2021 pg 4}

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Thanks folks for all your advice and support.

We will probably call Scholz or Lam for a consult, but in addition I have begun seeing the docs at Mayo am still making the rounds with specialists.

In looking at hormone therapy, does Lupron and casodex administration at the same time usually give serious testosterone flare side effects? Would there be a benefit to giving both for aggressive metastatic PC?

One urologist recommended surgery, another recommends against it in my case, opting for hormone treatment to start with.

I'm also scheduled to see a couple of oncologists (including Ondreyco) later this week.

Lots of options and I feel a little better about seeing more specialists.

Thank you folks for your advice.

Okay. So I met with Dr. Ondreyco yesterday.

She thinks I need to be much more aggressive in treating this. She also didn’t like that I was given Lupron at the same time as casodex because Lupron typically causes an initial flare-up of testosterone before shutting it down and that casodex should have been given for a week ahead of time before introducing Lupron to block that flare. She said the flare might actually boost the cancer cells for a while. She said she would have used dageralix instead of lupron. She agreed with the Mayo urologist and Mayo radiation oncologist I've seen so far that surgery and radiation were not good options for me at this point.

She said I probably have a mix of some typical prostate cancer cells and other more aggressive prostate cancer cells. She also said that from everything she’s seen in my records, this is not the “typical” prostate cancer that grows slow and that it is very aggressive and she predicts it will likely not fully respond to hormone therapy. She said that when prostate cancer cells get this aggressive, they tend to no longer need testosterone to grow and those kind of cells might not even be producing PSA anymore. She said she’d expect my PSA to be higher than it is considering that 12 out of 12 biopsy cores from the prostate were positive for aggressive cancer cells and that it’s already in the bones and lymph, yet I only had symptoms for about two months. She says that’s a sign this is an aggressive form of cancer.

She recommended I start chemotherapy soon/asap in addition to the hormone therapy. She said the hormone therapy would stop the “typical” cancer cells and that chemo would go after the aggressive cells that she thinks won’t be responding to hormone therapy. She also took more blood for more tests (PSA, circulating cancer cells, CBC). She also gave me a prescription for ketoconazole-prednisone which she said would help fight cancer cells that may be unresponsive to hormone therapy.

She also recommended I meet with Dr. Scholz, who operates out in LA and even called their office to help set up the appointment while I was there. So now I have an appointment with Scholz on Oct. 1st.

I understand that aggressive fast-growing cancer cells might not respond to hormone therapy, and that looking at PSA in a month or three might not tell me the whole story and that more bone scans will be needed to see if it’s still spreading, but that won’t be for a few more months, and that chemo is an aggressive approach to fast-growing cancer cells.

So...... I still have my first appointment with the Mayo medical oncologist on Tuesday and I don’t know what he’s going to recommend.

But now I don’t know what to do.

I’m actually hoping the Mayo medical oncologist on Tuesday gives a similar recommendation as this medical oncologist has. I haven't started the ketoconazole yet, I want to see what May MedOncologist says on Tuesday.

I'm glad you're moving forward and I hope you don't get confusing and conflicting advice from Mayo. While I can't speak to the specifics of the advice, I do thing that you want to hit this aggressively and I'm glad Dr Ondreyco is suggesting that. You will likely get similar advice from Dr. Scholz.

I'm not familiar with ketoconazole, but there are drugs that can attack cancer cells that don't respond to hormone therapy. In addition to standard hormone therapy (lupron and casodex) I'm on Zytiga for this. So far so good, in my case.

Thanks for reporting in and please keep us posted.

Michael

Here's a contact I made a while back regarding a clinical trial

Fabio Almeida M.D.
Medical Director
Southwest PET/CT Institute – Arizona Molecular Imaging Center - Indian Wells PET/CT Center
Specializing in Oncology PET/CT Imaging and Research
Phone:602.331.1771 Cell:520.661.5125

It turns out I was not eligible but Dr. Fabio spent a great deal of time on phone discussing my case at no charge. I was most impressed with him.

LupronJim

jcjames,
It looks like you are off to a great start. I love your comments on the value of each day and making the next years the best years. We should all live that way, cancer or not. None of us know our future exactly.
Southern Comfort

Congratulations, jcjames. Glad to hear you're on a treatment plan, and of your progress!

Your Testosterone level sounds like it's dropped pretty well in just 4 weeks, so that's encouraging. It looks like you're getting good results in just a month. The T level should keep dropping pretty rapidly over the next few weeks. You may be lucky enough to avoid the hot flashes. Mine started just a couple weeks from where you are now, building slowly, then becoming very regular every half hour all day. At six months, I barely notice most of them but every 2 hours or so I get one that makes me perspire. Everybody's different with them, but they're pretty common.

I think everyone likes to hear how you're doing! Oh, hey if you get a chance it would be of interest if you make a similar entry on the Gleason 9 thread I started so we can sort-of keep track of each other. (We have a little different focus than some of the other risk profiles.)
www.healingwell.com/community/default.aspx?f=35&m=2863652

It is never far from my mind either, and that's pretty common. If you can actively think about something else it seems to help. I don't think it's possible to "not think about" something. It has to be replaced with something else.

Hang in there, man.

Sounds like a good report to me. That's a great drop. There plenty of hope that you'll keep the beast at bay for a very long time.

Hang in there and keep us updated.
Andrew

JCJames,

Very sorry that you too, have to be here at HW. If you have the time, you may want to read my story as it seems like we have and are going through the same journey!! I'm glad and also sadden to day, it's taken me about a year to wrap my head around this trial in my life. I've always found myself to be a very kind and generous man and full of love towards everyone. This past year, I've taken that love and kindness to a whole new level not knowing when my last hours will be like on this wonderful earth. Since last Sept., I've had more pain, worked less (been on SSI since March), worked less but have loved more and ALL people look at me and comment that I don't look like I have what I have been DX. I trust in God, pray more and always try to wear a smile. Yes, been very tough as most nights I cry myself to sleep (for a few years now, my wife and I have sleeping in separate beds because of our medical problems and hope to move soon and get a King Size bed so we can start back sleeping together), but when morning comes, I'm a new man. Please feel free to contact me via email if you have any questions. There's so many great people here that can help you and answer questions you may have. I'm very new to the PCa world and am still learning. God bless you and I'm praying for you and all our family members here on HW.

Dave in Bartlett, TN

******** UPDATE ********

Three years since my diagnosis. It seems like so much longer.

In March 2014, six months after I started hormone therapy, my PSA began to rise again and a lymph node enlarged in my pelvis on CT scans. At that point my doctor immediately scheduled me for Provenge immunotherapy. When I started Provenge my PSA had already risen to 1.0 from 0.75 two months prior. I did the three rounds of Provenge and at the end my PSA had dropped back down to 0.73, which was a good sign - typically Provenge doesn't result in a PSA drop like that. I then started Zytiga w/prednisone and also stayed on Lupron and X-Geva. I've been on Zytiga w/prednisone for 26 months now.

Since May 2014, PSA has been in decline and since Feb 2015 PSA has been undetectable (<0.10) and testosterone is also virtually undetectable (<15).

I get Lupron, bone-scans and chest/abdomen CT scans every 4 months, X-Geva and blood tests every two months. I tolerated Provenge pretty well, and am doing fine on Zytiga. I don't get hot-flashes anymore but the fatigue is significant as well as loss of muscle mass, strength and endurance. Skin is thinner, bruising easier, and I have that mental "fog" that many folks report with HT. I also gained about 8-10 lbs.

I went out LA for several consults with Dr. Scholz and Dr. Lam as well as several phone consultations with them. I highly recommend this for anyone regardless of where they're treated. Scholz & Lam are the tops.

Currently I still go to my main oncologist at Mayo regularly.

So, three years after diagnosis, I'm doing about as good as could possibly be expected with no sign of any activity for over two years now.

That's the medical update. Things are good.


Now for the personal update and comments -

Four months after diagnosis I ran a half-marathon with my son (it was his first time, my third time). It was hard, much harder than before diagnosis, but I did it. Three months later (right after my 1st Provenge treatment) I did a 20-mile grand canyon hike from rim-to-river and back in a day with my son. It was my first time hiking in the canyon. It was hard but I did it. I'm hoping to do a half-marathon again next year (but we'll see). I run regularly and do light weight training (but I should do more weight-training I know). I try to stay active but this HT and lack of measurable testosterone really takes its toll on my strength and endurance.

My wife has been my solid rock of support - I could have NEVER gotten to where I am without her. I am SO thankful that she was with me every step of the way. My wife and my son is my purpose in life - to be a good father and good husband and enjoy every day with my family.

Following my diagnosis I took a 30% cut in pay to reduce my stress at work and that has also been so important - stress-reduction is important allowing me to focus on my family and stay healthy and balanced. I've also taken on more relaxing hobbies, gardening and even comic-book collecting!

I've also become so much more spiritually-focused. I KNOW that the power of prayer is real, and I know that so much of the good outcomes I've been getting are operating through prayer. I can't explain it here, but I have experienced spiritual "signs" that have helped me along this journey. God has blessed me in more ways than I could imagine!

Through all this, I am so greatly blessed. I hesitate to say I've been blessed by stage-4 metastatic cancer - but almost immediately upon diagnosis, my life became so much clearer, focused, purposeful and intentioned. I know 100% that "all things work for good to those that love the Lord", and yes even cancer can be used by God to do good in my life and for others. I wouldn't wish this on anyone, but I know God is using everything that happens for his purpose if I let him. Though I continue to pray for life, I know he has already answered those prayers with more life than I was expecting. Fear gripped my when I was diagnosed, but it also galvanized me to fight.

So... I still fight, and I still keep my mind/body/spirit nourished and balanced and would recommend the same for anyone in this situation.

Pray.
Spend time with your family.
Reduce your stress.
Exercise and stay active.
Remain hopeful about treatments.
Live.
Laugh.
Don't give up.


I started with PSA of 56, 11 of 12 biopsy cores positive with Gleason scores from 7-9 and metastatic cancer spread to bones including spine, pelvis, humerus and skull.

Three years later, PSA has been undetectable for the past 18 months and no activity on any scans in 29 months.


Life is good

Post Edited (jcjames) : 9/9/2016 8:57:39 PM (GMT-6)

jcjames said...
....
Pray.
Spend time with your family.
Reduce your stress.
Exercise and stay active.
Remain hopeful about treatments.
Live.
Laugh.
Don't give up.

A wonderful recipe for life with PCa.

Thanks for the update. Glad the treatment is working and allowing you to enrich your life and those close to you. Amazing what positive attitude and behavior can do to overcome life's hardships.

On another note, as I read through the thread I was reminded of two of our brothers that offered their best advice and well wishes that unfortunately have passed from this awful disease since you were diagnosed. Adjust and Zufus are truly missed and were always appreciated.