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Posted 3/7/2007 6:00 PM (GMT -8)
Hi All,

Well, today was the day myman & I went for the 2nd of the 3 month PSA results...and it was good!!!
I'm happy to say we join the others who have had positive PSA checkups recently.

His first was 0.8 and today's was 0.3 - Oh my God, what a relief! Yep, we lived all the brave stuff for 89 days...then this morning was here and the really tough waiting began.

This is the medical picture we got: the involvement of the aortic lymph nodes makes radiation not a good way to go for Don as the cancer is systemic. All his doctors agree on this point. The hormone treatment is working right now (remember...Don's PSA AFTER surgery was 11.8 and rose to 18.8) and in the future chemo most likely will be added. He does not qualify for any experimental tests at this time.

I'll continue to research and listen to what others are doing, there's so much valuable information here. I do wish I'd found this site sooner! But "it is what it is" and that's okay.

This is a blessed relief and life is good...89 more days of strong affirmations and positive thinking here we come! And we are grateful for every one of them!

To all who are engaged in this fight - your bravery and strength is something that we draw from, truly. Our thanks to all of you for the prayers, concern, advice and comfort we've found here.

Don & Susan
Posted 3/7/2007 6:08 PM (GMT -8)
Amen.
A positive story indeed. My bravery and strength comes from my spouse. And Don's from Susan. Keep up the fight. We are very happy for you.

Tony & Ruth
Posted 3/7/2007 6:13 PM (GMT -8)
Tony & Ruth,
You and your wife are people we much admire so coming from you ...that means a lot, thank you.
Posted 3/7/2007 9:09 PM (GMT -8)
Dear Susan & Don

This is the most difficult postings I have ever made on this website. As you know I have given you a lot of advice, support and encouragement. I cannot begin to tell you how much I want to hear that Don's PC has disappeared from the face of the earth. While I am elated to hear that Don's PSA is now at 0.3 and want to rejoice in it, I have to tell you what I feel in my heart and soul. I don't want to be a naysayer here, but the hormone treatment will not cure his PC and I think you already know this fact. The hormone treatment is probably responsible for the large drop in his PSA. Here is what the American Cancer Society says about hormone therapy:

"Hormone therapy is also called androgen deprivation therapy (ADT) or androgen suppression therapy. The goal is to reduce levels of the male hormones, called androgens, in the body. The main androgen is testosterone. Androgens, produced mainly in the testicles, stimulate prostate cancer cells to grow. Lowering androgen levels often makes prostate cancers shrink or grow more slowly. However, hormone therapy does not cure prostate cancer."

I beg you, if you have not already done so, to get a 2nd opinion on whether radiation (preferably proton) could also be used to hopefully eradicate any remaining cancer. You indicate that all of your doctors have concluded that radiation does not appear to be an option because of involvement of the aortic lymph nodes. I am not a doctor so I don't know what this means. I also don't know what doctors you are referring to. I assume you are referring to the group of doctors who originally treated Don.

There have been many cases where one doctor says no and another doctor says yes.* Maybe I am reaching for the stars here, but if I do not tell you what I believe, I would never forgive myself. A 2nd opinion by both a top medical oncologist and top radiation oncologist is vital to Don's case in my opinion, subject to getting further clarification from you. Sometimes even a 3rd opinion may be warranted. Maybe Don's doctors are correct, but I wouldn't accept their opinion as a final word without a 2nd or possibly 3rd opinion. Search for the best doctors you can find. If you have already done this, please forgive me.

My thoughts and prayers are with you in a very heartfelt way. God Bless!

Dave

*Hawkfan's posting today under Good News - Finally (to which you posted a reply) included the following comment: "My brother was diagnosed in 1995, opened up for an open prostatecmy, but closed right up, and given five years. After he searched out radiation and hormone treatments, he is still going strong 12 years later."
Posted 3/8/2007 3:35 AM (GMT -8)
hey Don and Susan, I just wanted to say that I was thinking of you yesterday and am happy to hear the results of the latest PSA test. Since we haven't had to worry about an increasing PSA post surgery, I can't say that I know everything about that. I know that Dave is speaking from the heart so please don't be disheartened after reading his post. Continue to fight the good fight.....God bless all of you, kat
Posted 3/8/2007 4:55 AM (GMT -8)
Congratulations on the good news. I admire your attitude. People like you and TC are wonderful examples of courage and grace.

Regards,

Bill
Posted 3/8/2007 5:40 AM (GMT -8)
Folks,

I'm a periodic poster at best --- but I gotta give a strong seoncd to pcdave's advice. We all hear stories of amazing comebacks --- I know a guy who had aortic lympth node involvlement in the early 90's, and is doing fine now (don't know the details, but he went to University of Michigan Medical Center for treatment)....and there's there's Michael Milken.... not to mention Hawkfan's brother... these guys did A LOT more than the standard protocal.

Rejoice in your progress... but I really think PCdave is steering your where you need to go with this ...(he's also right --- these are difficult posts to make!)

GOD BLESS.... AND GOOD LUCK!
Posted 3/8/2007 8:37 AM (GMT -8)

Thanks Kat and Sterd 82 for your postive comments about my posting to Susan and Don.  Yes, what I said was deeply heartfelt. I had great difficulty making that posting and almost deleted it. However, I wanted to caution Don and his lovely wife Susan not to leave any stone unturned.  As you know, we read in post after post here that getting the best doctors and more than one opinion is often critical to a successful outcome.  God Bless!

Dave

Posted 3/8/2007 12:24 PM (GMT -8)
Hi Susan and Don,

Good news is always welcome! Be assured of our prayers and hopes for your positive outcome.

Dave should be a doc!!!!!

Jim
Posted 3/8/2007 3:29 PM (GMT -8)
Thanks Bill, Kat, Jim & stern for your good wishes & kind thoughts.
Dave - I don't have time to answer your post right now but I will later. I do believe you speak from the heart and your intentions are to help us. I do not doubt that at all. So I thank you.
Later,
Susan
Posted 3/8/2007 5:33 PM (GMT -8)
Dave,

Hormone Therapy is the standard for someone who has advanced prostate cancer, like Don, whose cancer has metastasized to the lymph nodes. Since cancer cells are microscopic it takes a number of them to make their presence known so the location of the cancer was not evident until the second cat scan was taken after surgery. Besides the CT’s there were many tests taken repeatedly by both sets of doctors - one in Tampa at Moffitt and one at Maine Medical Center in Portland.

Rising PSA (despite “successful” surgery) and cancer in the lymph nodes are not an indication for radiation therapy. Lymph node involvement indicates systemic cancer - not localized to the prostate bed.

We do understand what beginning hormone therapy means for Don - this is where he is. The fact that we’re okay with that doesn’t mean we’re resigned or wouldn’t listen to the concern shown us by people like you, Dave. Quite the opposite, we rejoice when a poster tells how a treatment is working or someone is bold & brave enough to try something new. And if one of those treatments seems like something that would apply to Don we will check everything out.

So, we thank you for your willingness to step out there for us. You're a friend that we're grateful for!

I'll be keeping my eye on your post,
Susan
Posted 3/8/2007 6:47 PM (GMT -8)
Love hearing the good news. That PSA is going down, down down.....
Posted 3/8/2007 9:15 PM (GMT -8)
Susan & Don,   This definitely calls for a …….   *&^%$#@     WOO ~ HOO!!   (*&^%$#   Take this time and feel the embrace from all of us! We are right there with you in your sigh of relief……..   This woo-hoo is being sent with an extra “punch”. Yes ~ life is good….   And we will take today for what it is… The most precious of Gifts.                                  Knowledge     is     Power As our KNOWLEDGE grows the POWER to make OUR decisions GROW!!!!!   pcdave…. This is where your advice, support and encouragement come into play. Taking the time to share the extensive research you have done… is a wonderful gift to all of us.   And helping us to reach a little further toward that star…. May just be the “best gift of all”.   It allows us to have more information ~ that we may not have had in the past ~   helping with the decision making process for all of us.   Continue your thoughtfulness and your carefully worded postings are truly heartfelt.   Kinda like Swimom with her “tough” love!!!   This is your way of showing us “tough” love and it’s appreciated.   We truly feel the love!!!      Keeping all of you close in thoughts and prayers. In Friendship ~ Lee & Buddy
Posted 3/9/2007 3:01 PM (GMT -8)
Lee, Piano Man, & Dave - Thanks for your kind thoughts - every one of them means so much! We take the positive energy from each one!

Jim - I, too, think our PCDAVE should be a doc!
Posted 3/11/2007 6:52 PM (GMT -8)
Bumping this up for Lee & Dave
Posted 3/17/2007 5:33 PM (GMT -8)
Dear Susan

I am finally getting back to you! You posted the message below to my Proton Radiation Therapy thread. You indicated that you were in touch with Loma Linda--did they offer you any hope for salvage radiation therapy for Don? Please let me know what is going on and how Don is doing. I am always thinking of both of you.

Don's situation motivated me to recently establish a new thread entitled "Recurring Prostate Cancer After Failed Surgery and Radiation". It seems to be attracting a lot of attention. Have you read this thread yet? This thread is only the beginning--I hope that we can continue to add as much vital information on this subject as possible. We are getting some good postings from others.

God Bless!

Dave

"Posted 3/6/2007 1:03 AM (GMT -5) Dave - I thought you'd like to know I'm in touch with Loma Linda regarding proton treatment - if it's an option for Don - they have all of his stats and I expect to hear something back soon. We'll be at Moffitt on Wed. to find out the latest PSA results and to get his 3rd Lupron shot.

Now for YOU - be sure to eat well, do some form of exercise and get enough rest. Be good to yourself."

All the best Dave,
Susan
Posted 3/28/2007 6:28 AM (GMT -8)

Dear Susan

At long last I am hearing from you!  I think of you and Don often and have been wondering what progress you and Don have been making in pursuing the continuing treatment needed for him because of the most unfortunate failed surgery.  I am glad to hear that you are communicating with Loma Linda--it gives you hope.  Not being a doctor, I have no idea about the cancer in the distant nodes.  I don't know how often that happens.  Usually the nodes in the pelvic area are removed at the time of prostate surgery.  If they can identify where those distant nodes are, why couldn't they be removed surgically.  In many other types of cancer operations, it is common to remove nodes elsewhere in the body.  Has this possibility been discussed with any of your doctors?  I would hope that Don would agree to any further treatment that gives him a good chance of wiping out the remaining cancer.  I know it has not been easy for both of you, but don't give up the fight.  Please keep us informed of the progress you are making.  What a wonderful wife Don has!  Fighting for her man all the way! God Bless!

Dave  

3/27/07  "Dave - here I am. I talked with Loma Linda on Thurs. After furnishing the rest of Don's records to them I should be getting a call on Thurs or Fri. Mila was extremely nice and sent out info to us right away. The biggest issue is the "distant nodes" (out of the pelvic area) that the cancer is in. I don't know any more than this at the moment but I promise to let you know. This is difficult.
My next task is this: if they say it can be done...will Don agree.

Thanks for keeping after me - giving me the call out in such a kind way. You are pure gold."

Susan

Posted 4/3/2007 11:28 AM (GMT -8)
Susan,
Dr. David Pom.arantz at NCI is my IMRT radiaologist. Dr. Nicholas Vogel.zang is the head of the program there as well. Since you have started HT they would look into different salvage therapies. Dr. P says that his tomotherapy is very useful is tracking locations to treat using radiation. He said that lymph nodes are one of his targets. It certainly won't hurt to explore this with him. He loves to talk about his science and he isn't afraid to wander outside of the protocol that is normally followed. He told me that he is fully involved with the therapy contraversy, both nationally and with his director, Dr. V. I like that he won't take no for an asnwer if there is indeed a way to proceed with IMRT he will.

Tony
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