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Old 02-08-2010, 08:14 PM   #1
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New treatment...PSA dropped from 151 to 71 in a month!

Hi everyone,
Wow what a last crazy few months. We've relocated back to Texas and when doing so...I experienced some rather debilitating swelling caused from the lymph's pressing into my right kidney...I finally got stents placed into both kidneys which happened a little too late...I ended up blowing up 30 pounds of water weight from my knees all the way up to the upper sides of my torso. Needless to say, I was in bad shape to walk. By being out of commission for weeks while I took IV treatments and pills to get the water weight off...I ended up with 3 blood clots consuming the better part of my right leg. I'm still taking blood thinners and probably will for some time to come. So, I have finally found a treatment through MDAnderson that is beating down my PSA and Alkaline Phosphate. The last results I had was December 27th...I am hormone refractory since July '09 and lymph nodes took off...then, in December we discovered that the bone had taken off after being stable for a year and the lymphs were stable. So, I am on a new chemo regimen where I take a 15 minute IV of Adriamycin one day a week for 3 weeks on and one week off. I also take ketaconazole pills 2 morning, 1 afternoon, and 1 evening. This pill I take every day throughout the treatment. After 3 months of this regimen they want to do strontium 99 IV to target the bone mets. After the first month, my PSA dropped from 151 to 71...largest drop I have seen since battling this disease 1 1/2 years. I also saw the alkaline phosphate go from 231 down to 192. This is a marker showing bone disease. We are hopeful that this treatment will finally be one to stop the progression...still concerned about the radioisotopes end of March...not sure if that's the right decision since the lymph nodes have been an issues as well. By being off treatment of chemo from April through September will my lymphs take off while the radioisotopes battle the bone? Any thoughts or opinions...would love to get your experience especially if you are experiencing an aggressive form of PC. I am turning 47 next month...and my son turns 6. Looking forward to a cure to protect his future! Keeping the fight going.
John and Linda

 
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Old 02-09-2010, 02:18 PM   #2
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Re: New treatment...PSA dropped from 151 to 71 in a month!

Hi John,

Nothing like a good PSA report to perk you up! Looking good there! I'll put a few quick thoughts in green in an excerpt of your first post.


Quote:
Originally Posted by Johnracer46 View Post
... So, I have finally found a treatment through MDAnderson that is beating down my PSA and Alkaline Phosphate. The last results I had was December 27th...I am hormone refractory since July '09

Would you mind telling us how MD Anderson determines that? Of course they are a leading institution for prostate cancer, but as a layman survivor representative I've run into many researchers and doctors who basically declare a patient refractory when he is on single hormonal blockade, or perhaps double blockade, has a rising PSA, but has a testosterone up to 50 and DHT unmeasured. The doctors I follow do not feel a patient is truly refractory unless (1) he has been on triple blockade (technically, a LHRH-agonist drug like Lupron; an antiandrogen drug, usually Casodex; and a 5-alpha reductase inhibitor, often Avodart instead of finasteride) instead of single drug or combined two-drug blockade; I believe you have been on that triple regimen; (2) his PSA is rising, (3) his testosterone is below 20 instead of 50, and (4) his DHT is around 10 or below. They often use triple blockade with a bisphosphonate in support, with Zometa the choice if the patient has metastases, which you have been on. Does MD Anderson work it up that way? Many doctors and physicians use a testosterone of 50 or lower as evidence that the LHRH-agonist drug is working satisfactorily; that is probably the accepted, standard of care, conventional wisdom. However, as a survivor of a challenging case now in my eleventh year of treatment, I'm convinced the pioneering doctors have got it right and that the conventional wisdom is wrong.

and lymph nodes took off...then, in December we discovered that the bone had taken off after being stable for a year and the lymphs were stable. So, I am on a new chemo regimen where I take a 15 minute IV of Adriamycin one day a week for 3 weeks on and one week off. I also take ketaconazole pills 2 morning, 1 afternoon, and 1 evening. This pill I take every day throughout the treatment. After 3 months of this regimen they want to do strontium 99 IV to target the bone mets. After the first month, my PSA dropped from 151 to 71...largest drop I have seen since battling this disease 1 1/2 years. I also saw the alkaline phosphate go from 231 down to 192. This is a marker showing bone disease. We are hopeful that this treatment will finally be one to stop the progression...still concerned about the radioisotopes end of March...not sure if that's the right decision since the lymph nodes have been an issues as well. By being off treatment of chemo from April through September will my lymphs take off while the radioisotopes battle the bone?

I'm not familiar enough with chemo to know why it will be halted, but will the Ketoconazole be halted as well? That is pretty potent hormonal blockade treatment. In my layman's opinion, it would have a good chance of controling the lymph node cancer even without the chemo, at least for a while. Are you keeping up the Lupron, Zoladex or other LHRH-agonist or antagonist along with the Ketoconazole? Are you also still on finasteride Avodart?

Have they given any thought to adding Leukine, the immune system drug? A number of leading physicians and researchers are reporting great results with Leukine. Also, Leukine's key ingredient is known as GM-CSF. That is also the key ingredient in Provenge, the new drug that should be approved by the FDA within the next few months for hormone refractory men with bone mets but without symptoms, as I recall the key target group. The official deadline for the decision is in the month of May, but that could be accelerated or slip. Still, should this drug be approved soon, you might be eligible. Also, there is the equivalent of a compassionate use trial going on now where you get this expensive drug treatment for free. Has MD Anderson talked about Provenge for you?

Are you using all the lifestyle tactics? I'm convinced that the package of nutrition/supplement/diet tactics makes a substantial difference in outcomes. Though we still lack conclusive evidence of the effectiveness of any of the particular elements, much of the evidence is looking strong. Have you cut out all red meat, pork, eggs and dairy food, for instance? One of the other nutritional elements is quality pomegranate juice or extract, and I'm almost positive that MD Anderson is starting a trial using pomegranate for men with recurrence of prostate cancer. You probably would not qualify for the trial, but you might benefit from having doctors interested in pomegranate and prostate cancer on the staff at MD Anderson.


Any thoughts or opinions...would love to get your experience especially if you are experiencing an aggressive form of PC. I am turning 47 next month...and my son turns 6. Looking forward to a cure to protect his future! Keeping the fight going.
John and Linda
Keep your spirits up, and congrats on that fine drop in PSA!

Jim

 
Old 02-09-2010, 03:19 PM   #3
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Re: New treatment...PSA dropped from 151 to 71 in a month!

Hi Jim,
Yes, I was on triple blockade and zometa. Today, I am still getting every 4 month Lupron shots. I am off finasteride and Zometa. Much of the reason is due to the problems I eluded to in October...I had a nephrosphomy tube in for 4 months to drain left kidney, got pneumonia and staph infection, and then ended up with serious kidney issues which most of the drugs are very hard on the kidneys...so, had to get stents put in the kidneys leading to the bladder. Then, the immediate water gain leading to the blood clots. I am luckily water weight free again. That took a good part of a month 1/2 to lose the water with doctors watching closely.

Hormone refractory status was because the climb of the PSA went to 98 within a few months while on triple blockade therapy. My testosterone is well under 50. But, they determine when the hormone therapy stops keeping the cancer progression at bay that the refractory status comes into play. My lymph nodes took off and the bone progression could be seen as alkaline phosphate numbers began to rise from 66 to 114 and now it's 192 after being as high as 231. I have been taking supplements and otherwise eating or drinking the recommended foods. I don't eat red meat and stay away from dairy products. I drink water, pomegranite cranberry juice, diet green tea or vitamin 10 waters. I am to be off all treatment for 5 months after the strontium 99 is given the end of March. So, I will not be taking ketaconazole for that time period. The only thing that will continue is Lupron shots.
Hope all is well with you and your successes continue in your own treatment!
Take care,
John and Linda

 
Old 07-19-2010, 02:37 PM   #4
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Re: New treatment...PSA dropped from 151 to 71 in a month!

Hi John & Linda, I haven't seen any recent posts from you and was wondering what the latest is? My husband will hopefully start a new drug called Cabizetaxol this week. It was just FDA approved the end of June. His case is a lot like John's. Look forward to an up-date.

 
Old 07-20-2010, 03:28 PM   #5
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Re: New treatment...PSA dropped from 151 to 71 in a month!

John passed away June 24, 2010 in the hospital with organs shutting down. He was hospitalized the day after Father's day and things got worse. Began with urine in blood, then no urination. We'll miss him greatly. Young at 47 leaving behind 3 beautiful children 4, 6, and 12 and wife and many friends and family that love him dearly. The issue that plagued us besides having Stage 4 diagnosis at the beginning...Oct 2008...was that his kidneys became and issue through treatment. We had nephrosphomy tubes, and then stents...finally those didn't work in April 2010 and more nephrosphomy tubes and stent replacement happened. Never could get over the kidney issue. He did have chemo and radiation in the month of April to alleviate his lower back pain from bone mets. So glad for God's choice to take him quickly. A 20 month battle ended as quickly as it began for us. I wish you all well with your battles...continue to fight as John did up to the day he died! Every day he had a positive attitude. He died not even being told this was the end...he was rushed into ICU and put under to die in his sleep peacefully. God only gives us what he knows we can handle...I do believe this! God bless!

 
Old 07-20-2010, 08:18 PM   #6
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Re: New treatment...PSA dropped from 151 to 71 in a month!

You have my deepest sympathy. My God be with your family until you reunite.

John

 
Old 07-21-2010, 03:20 PM   #7
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Re: New treatment...PSA dropped from 151 to 71 in a month!

I was so terribly sorry to hear this. Thank you so much for replying to me. My thoughts and prayers are with you and your precious family. God bless you and may the peace only He can give be with you.
Sincerely,
Charlyn Dean

 
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