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provenge

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49packard
Regular Member
Joined : Jul 2011
Posts : 138
Posted 11/3/2013 3:53 PM (GMT -8)
Baptista:

 

I have been battling prostate for 8 very long years.

I use to hope for a cure. Now it is just buy a block of life.

It has been 17 months with Provenge.

It has been the easiest to take as a treatment.

Some day I ask myself is it all worth it. But with one great grand child here to call me Pap-Pap and one on the way to add to the size of my family.

Life is good.

49packard 

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Jerry L.
Veteran Member
Joined : Feb 2010
Posts : 3197
Posted 11/3/2013 4:02 PM (GMT -8)
49,

I may have missed it....are you on Casodex as well? And throughout your Provenge?

Thanks,
Jerry
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49packard
Regular Member
Joined : Jul 2011
Posts : 138
Posted 11/5/2013 8:31 AM (GMT -8)
 

Jerry L.

No other drugs except Provenge.

For 17 months.

Plus Lupron (that is a given)

49Packard

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49packard
Regular Member
Joined : Jul 2011
Posts : 138
Posted 12/28/2013 1:16 PM (GMT -8)
Merry Christmas to all:

Update 10-17-2013:

I could not have waited for two months to pass before another PSA test. This PSA result was 90.6. Although a drop of only 4.2 points from my September labs it is a decrease! Hallelujah. My family, friends and doctors can once again live with me as a person. I can now live with myself as a person. My days now seem much brighter. The funny thing about this Provenge “roller-coaster”, is that I have not felt this physically good in years.

Thumbs-up smiley face


wink
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samham55
Regular Member
Joined : Dec 2013
Posts : 56
Posted 12/28/2013 1:22 PM (GMT -8)
49,

That's great. Keep on enjoying life. I sure do.

Sam
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Jerry L.
Veteran Member
Joined : Feb 2010
Posts : 3197
Posted 12/28/2013 1:22 PM (GMT -8)
Great news Packard....

Isn't that what is most important...feeling good...

Hope you had a Good Christmas and Here's to a Happy New Year!!!!
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49packard
Regular Member
Joined : Jul 2011
Posts : 138
Posted 12/30/2013 7:47 AM (GMT -8)
samham55

I hope you do as well on Provenge as I am doing. It will be two years the first of May.
I just have to put up with my Lupron side effects. (Hot flashes)
In my case I had no side effects from Provenge. To this day I feel great.
I just wished Provenge would make available a booster shot. I would be first in line to receive one.
You all have a great New Year.

President
Wheels for Prostate Cancer Research, Inc.
Fighting PROSTATE CANCER With PROVENGE
www.WfPCR.org/
smhair smhair
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samham55
Regular Member
Joined : Dec 2013
Posts : 56
Posted 12/30/2013 1:42 PM (GMT -8)
Packard,

Had my first infusion 12/20 and my second cell collection today. Feeling great. No side effects at all.

Thanks,

Sam
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49packard
Regular Member
Joined : Jul 2011
Posts : 138
Posted 12/30/2013 2:04 PM (GMT -8)
samham55

Look up my web site and send me a e-mail.
Great to hear from you.

Wheels for Prostate Cancer Research, Inc.
Fighting PROSTATE CANCER With PROVENGE

www.WfPCR.org/
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HOPENEVERDIE
Regular Member
Joined : Aug 2012
Posts : 199
Posted 12/31/2013 12:18 PM (GMT -8)
49packard,

Hope this trend continue for you in 2014. I am making resolution for you for 2014:

You PSA continue to drop or never go more then 100 and so your PSAD continue to be > 18 months;

You don't need any other drug during 2014.

You said :" The funny thing about this Provenge “roller-coaster”, is that I have not felt this physically good in years."

I also wish you to feel so good in 2014.

Don't forget DR. MARK SCHOLZ (Medical Director of Prostate Oncology Specialists, Inc., and Executive Director of the Prostate Cancer Research Institute ) said:

"Most of the time PSA continues rising after Provenge. So people start wondering, if PSA is not dropping, how can Provenge prolong survival? People forget that even though Provenge is administered over a six-week period, once the immune system is activated, it keeps functioning indefinitely; it’s the gift that keeps giving for the rest of your life. Therefore, even if Provenge only slows disease growth slightly, the inhibitory effect keeps accumulating over time. So over a period of years, even a mild effect can become substantial."

about Provenge booster shot :
Presently Dendreon announced that some doses of Provenge were infused with an inadequate CD54 upregulation. CD54 upregulation is a measure of antigen presenting cell activation that is one of two product potency measurements they use . Company will arrange for re-infusions of Provenge at no cost to the patient. Contact your doctor and see if you receive a little weaker dose. If one of your dose was a little underpowered you can have that booster shot.
Less than 0.3% of all men who affected by it is pretty low considering all of the variables involved. We are dealing with an autologous ex vivo system. There is individual variation in immune responses as well as the variables in the process itself. I think its remarkable that the incidence is so low.
Most QI processes in medicine involve > 0.3% error rate. This shows the high quality standards by Dendreon for this manufacturing area. The fact that they can offer reinfusions is also remarkable.

If you Okay I will continue to post about Provenge on your new threat . I would like to ask ( if you don't mind) to put number 2 in the heading of your thread that it look like: PROVENGE 2.
So those who are interesting about Provenge would know there is threat PROVENGE 1 when they can find more information about this incredible treatment.

Happy New Year!

My best, Hope.

Post Edited (HOPENEVERDIE) : 12/31/2013 1:24:54 PM (GMT-7)

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Devasted1
Regular Member
Joined : Feb 2011
Posts : 495
Posted 12/31/2013 8:31 PM (GMT -8)
Congrats 49packard.

Here is to a very Happy New Year at your home and with your kids, grandkids and now great grandkids. That is really awesome. Provenge is a wonderful step for those of us who have had it. Lets hope it continues to work for us.
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Jerry L.
Veteran Member
Joined : Feb 2010
Posts : 3197
Posted 1/1/2014 7:26 AM (GMT -8)
Hey Devasted1 and 49,

Do you guys mind if I put you on the list:

https://www.healingwell.com/community/default.aspx?f=35&m=2948232
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49packard
Regular Member
Joined : Jul 2011
Posts : 138
Posted 1/2/2014 1:47 PM (GMT -8)
Hi You All:

You guys are a blessing to me, so post whatever is the best for prostate cancer patients to read and stay up dated.

I am looking forward to June 1, 2014 as this will put me at the two year mark for Provenge.

You know the TAK-700 test trial was a great drug till it stopped working.
Provenge was far superior to TAK 700 as I had NO side effects.
Hope all of you had as great of New Year as I did.

49 Packard
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49packard
Regular Member
Joined : Jul 2011
Posts : 138
Posted 1/3/2014 11:29 AM (GMT -8)
Hopeneverdie:

It only took me 2 seconds to fire off a e-mail to my Provenge Dr. after I read the that maybe a booster shot was waiting for me.
No such luck.
Here is the reply I received back.
49 Packard

Please know that the above situation does not apply to our Provenge patients that have completed their therapy or currently receiving therapy. This was a very small percentage from 3 years ago and those practices that were affected have been notified.

Let me know if you have any additional questions.

Kindest regards,
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samham55
Regular Member
Joined : Dec 2013
Posts : 56
Posted 1/5/2014 11:50 PM (GMT -8)
Interesting news story about racing Provenge delivery to cancer patient despite winter storm.

http://www.poughkeepsiejournal.com/article/20140105/NEWS01/301050038/Storm-triggers-urgent-race-acr
oss-U-S-get-treatment-cancer-patient?nclick_check=1

Sam
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49packard
Regular Member
Joined : Jul 2011
Posts : 138
Posted 1/14/2014 11:48 AM (GMT -8)
Hi All:

Just spent all of Monday 1/13/2014 at NIH ( National Institute of Health)Bethesda, Md. checking into a new test trial that contains Prostvac and Enzalutamide (Xtandy).
On October 18, 2013 PSA was 90.9
On January 13, 2014 PSA is 123.0 that is a 32.4 jump.
This is a 7.08 months doubling time.
Looks like Provenge has met it match, and the cancer is winning.
I go on Friday 1/24/2014 to get bone & CT scans.

49 Packard
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wampuscats
Veteran Member
Joined : Nov 2011
Posts : 530
Posted 1/14/2014 12:34 PM (GMT -8)
Hello 49pack,

Sorry to hear about the PSA rise..
I was at NIH all day Monday also!! Pretty busy up on 12 eh? We could have been sitting next to each other. Have you been excepted into the trial yet or still in the process?
I'm in one of the Enza/Prostvac trials. Here is a link to the HW thread i've been communicating my results in:

www.healingwell.com/community/default.aspx?f=35&m=2930892

Maybe we'll be able to meet up there since i've got another 12 visits lined up rolleyes

Feel free to email if you have any questions.

Best to you,
Jim
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HOPENEVERDIE
Regular Member
Joined : Aug 2012
Posts : 199
Posted 1/14/2014 12:35 PM (GMT -8)
49packard,

I hope your doctor has plan for you what to do next. Still there are a lot of treatments that can give you many years ahead.
You maybe will be interesting look at Dr. Mark Scholz plan treatment that he outlined on his website:

"Living with Advanced Prostate Cancer

Dr. Mark Scholz from Prostate Oncology Specialists discusses his approach to treating CRPC (HRPC) prostate cancer, and advanced prostate cancer patient Gilbert shares his journey in a candid interview.

The ROYAL Shade of Blue ( for mCRPC )

Men in the ROYAL shade have metastatic prostate cancer that has spread to bone, or, to lymph nodes outside the pelvis, or, they have a PSA over 100, or, they have a rising PSA with a low testosterone level.

Men with advanced prostate cancer tend to live longer than men with other types of cancer. One major reason is because prostate cancer doesn’t usually spread to critical organs like the brain, the liver or lungs. Another reason is the availability of so many effective treatments.

Treatment for ROYAL

Men with ROYAL who have never had hormone therapy should start testosterone inactivating pharmaceuticals (TIP) beginning with Lupron and Casodex in combination.

Men who have become resistant to Lupron should take Provenge to boost their immune system. Studies show that Provenge works better when treatment is started as early as possible.

Radiation to cancer metastases has historically been reserved exclusively for controlling bone pain. However, newer thinking suggests that radiation directed to all known sites of metastases—when the numbers of metastases is relatively small, say less than five—may occasionally lead to longer remissions

Potent medications to strengthen the bones—Xgeva and Zometa—are routine treatment for bone metastases. There have three benefits: Inhibiting cancer growth in the bones, reducing bone pain; and counteracting calcium loss caused by hormonal therapies.

After Provenge men in ROYAL the first step should be to stop Casodex and start one of the following three options:

1. Second-line TIP such as Zytiga or Xtandi

2. Chemotherapy with Taxotere or Jevtana

3. Xofigo, a form of injectable radiation

Three additional treatment options can be considered if these first three options are no longer effective:

1. Combination chemotherapy using Carboplatin or Xeloda with a Taxane or the combination of both Revlimid and Avastin added to a Taxane.

2. The “off label” use of XL-184, a medication being researched for prostate cancer but already FDA-approved to treat thyroid cancer

3. Other investigational medications

Investigational trials represent an opportunity for patients to get medications prior to FDA approval. A patient’s enthusiasm for embarking on a study however, needs to be tempered by what is actually known about the effectiveness of the specific medication being researched. Some medications are so new that even the investigators performing the trial don’t know if they are going to work or not.

While men are on treatment they need to have their blood monitored monthly by checking PSA, PAP, ALP and CTC levels. Medication side effects and cancer-related problems also need to be screened for with monthly blood tests such as CBC, a metabolic panel and a hepatic panel. A periodic bone scan and body scan should be performed to track the disease status. Two to three months after starting a new treatment, if the blood markers are not improving, a change in therapy needs to be considered.

Reducing the Side Effects

Fatigue is one of the biggest challenges faced by men in ROYAL. Stimulants such as Provigil or Nuvigil may be helpful, but the most important priority is consistent, diligent exercise. A variety of different medications can be useful for reducing side effects from hormone therapy. Low-dose estrogen skin patches can control hot flashes. Excessive mood swings can be stabilized with low doses of antidepressant pills. Breast enlargement can be prevented with Femara.

Final Thoughts

We have outlined a traditional, sequential approach to treatment selection. Strong consideration, however, should be given to using these active new agents in combination and at an early stage. An aggressive and imaginative treatment plan should be designed that has the specific goal of attaining and maintaining a complete remission."

prostate-cancer.org/feat-video/living-with-advanced-prostate-cancer/


Here clickable for Samham55 post:

www.poughkeepsiejournal.com/article/20140105/NEWS01/301050038/Storm-triggers-urgent-race-across-U-S-get-treatment-cancer-patient?nclick_check=1

My best Hope
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Jerry L.
Veteran Member
Joined : Feb 2010
Posts : 3197
Posted 1/14/2014 5:16 PM (GMT -8)
49 Packard,

Provenge isn't really tracked by PSA, correct? My understanding is that it will continue to work and makes subsequent therapies that much more effective.

Prostvac and Xtandy? cool... I hope it works out that you can participate...

Hope --- good stuff as always. Some of that looked like a page out of my playbook...:

"Radiation to cancer metastases has historically been reserved exclusively for controlling bone pain. However, newer thinking suggests that radiation directed to all known sites of metastases—when the numbers of metastases is relatively small, say less than five—may occasionally lead to longer remissions

Potent medications to strengthen the bones—Xgeva and Zometa—are routine treatment for bone metastases. There have three benefits: Inhibiting cancer growth in the bones, reducing bone pain; and counteracting calcium loss caused by hormonal therapies."

This seemingly has been the game I have been playing...keep the bones strong and have been using Xgeva every 6 months or so...scan every 6 months and if I find anything...zap them...done it twice, might have one on deck...too early to tell, but one scan shows something and two others don't...

Lots of things out there, Packard...xofigo for smart bomb radiation attack, etc..., and etc... hang in there... a plan will surface..

Thanks,
Jerry
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Devasted1
Regular Member
Joined : Feb 2011
Posts : 495
Posted 1/15/2014 5:35 PM (GMT -8)
JerryL,

Yes, you can put me on the list that you inquired about.
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49packard
Regular Member
Joined : Jul 2011
Posts : 138
Posted 1/16/2014 6:13 AM (GMT -8)
Wampuscat:

Looks like I am trying to get into same trial.
Could you send me a e-mail to info@wfpcr.org.
Check out my web site.

President
Wheels for Prostate Cancer Research, Inc.
Fighting PROSTATE CANCER With PROVENGE
www.WfPCR.org/
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49packard
Regular Member
Joined : Jul 2011
Posts : 138
Posted 1/16/2014 6:21 AM (GMT -8)
Hi all :

Just back from NIH.
What a day. First with accident on beltway putting me a hour late the setting 1 1/2 hours in admissions did not start my day off to a great start. start.
Just got my blood work and it does not look to bad for a old goat.

I really do not want to start a new drug at this stage of my life.
But with the rising PSA I guess I will have to give in.
THANK GOD FOR PROVENGE FOR THE LAST 20 MONTHS.



President
Wheels for Prostate Cancer Research, Inc.
Fighting PROSTATE CANCER With PROVENGE
www.WfPCR.org/
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HOPENEVERDIE
Regular Member
Joined : Aug 2012
Posts : 199
Posted 1/17/2014 2:11 PM (GMT -8)
49packard,

Just remember that the inhibitory effect of Provenge results in a progressively longer survival when its effects are allowed to accumulate over a longer lifespan.

You still continue to benefit from Provenge until rest of your life.

Now no only Provenge has benefit of longer survival ( OS) but evidence exits that Provenge prolong PSA doubling time, suggesting that it alters the decease trajectory.


I understand you try to enroll in trial:

Enzalutamide ( Xtandi) With or Without Vaccine Therapy for Advanced Prostate Cancer ( Prostvac vaccine), where one of the eligibility is patients will be stratified based on previous Provenge.

clinicaltrials.gov/ct2/show/NCT01867333?term=prostvac&rank=6

Wampuscat enrolled in different trial :

Enzalutamide ( Xtandi) in Combination With PSA-TRICOM in Patients With Non-Metastatic Castration Sensitive Prostate Cancer.

clinicaltrials.gov/ct2/show/NCT01875250?term=prostvac&rank=12

Good luck to you and Wampuscat with these trials.


Interesting Dr.M.SCHOLZ in the Prostate Oncology Specialists has trial combination Provenge with other immunotherapy Yervoy :

Sipuleucel-T ( Provenge)and Ipilimumab ( Yervoy) for Advanced Prostate Cancer

clinicaltrials.gov/ct2/show/NCT01832870?term=provenge&rank=19

Because Dr. M. Scholz so big believer in immunotherapy, he was main initiator of this trial and it only conducts in his clinic. In his words :" Provenge and Yervoy used together are so attractive conceptually that the only question remaining is about the optimal method of delivery. "

I think maybe you can try to connect with him or his stuff and talk about it or booster shot of Provenge ( it will be no surprise for me if he has idea about it as future trial! ). I think it will be no harm to you just try give a call and see where this talk will lead and maybe have some new idea for your future treatment.

My best Hope
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samham55
Regular Member
Joined : Dec 2013
Posts : 56
Posted 1/17/2014 2:28 PM (GMT -8)
49packard,

Wishing you the best. Tough old goats are better at this journey than others.

I finished my 3rd Provenge infusion yesterday.

Sam
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49packard
Regular Member
Joined : Jul 2011
Posts : 138
Posted 1/18/2014 4:09 AM (GMT -8)
samham55

Looking back just the last 20 month have been the best of my cancer journey(PROVENGE)

49 PACKARD
Good luck
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