when to worry

Time to worry
tspoon,

Sorry to hear of your worries. The nurse is not a specialist in prostate cancer. Your husband's diagnosis is serious as you know. Initially it appears (from what you have posted) that the HT was working. It now seems that the cancer has become resistant to hormone therapy and is starting to increase again. A different HT cocktail may be in order but eventually these drugs will cease to be effective for advanced stage prostate cancer.

There is a new drug called Provenge that you may wish to investigate which has recently been approved by the FDA and woks differently than conventional HT in that it uses the immune system to fight the cancer.

I would recommend that you see second opinions.

Best,

K

tspoon said:

Thank you for your response.
Thank you for your response. After the nurse's comment and my response to it I spoke to the urologist. He mentioned Provenge as a possibility but I thought I read last summer this one of the last treatment options. Right now I am trying to relax in all this, he feeds off my anxieties and I am having a hard time with this.

Be Vigilant and Define Future Care
Tspoon

Your husband needs to look for a specialist in advanced PCa, and the timing seems to be right. The nurse’s comment is that of a typical care giver (don’t worry be happy) proving that she got no clue of the risky conditions of your husband (not dad; sorry for my other last post).
Present drugs have done well in holding the cancer but they may be showing weakness and probably not enough to hold the wide range of metastases you have posted in a previous thread.
http://csn.cancer.org/node/227569#comment-1135645

At one point in his progressive treatment, your husband will require targeted medications therefore; it may be wise to define now solutions for his future care. Some patients travel or get periodical consultations at far clinics, using a local oncologist just for follow-up. This approach will be my choice too, once I get to such conditions.

The next PSA will certify the meaning of the small increase. In any case, the Zoladex works well with his type of cancer and to add an antiandrogen is the habitual. Casodex taken daily (50 to 100mg) may turn the side effects more accentuated but will not add anything new to what your husband got used by now. You can also get opinions in adding Finasteride or Dutasteride.
Diet and physical fitness is what I recommend for countering the side effects.

I also recommend him of getting a testosterone test done the soonest to verify for the effectiveness of Zoladex. High levels of T could justify the “presence” of higher PSA, and therefore a lack in the blockade.
The same goes to a DEXA scan and lipids for checking Xgeva effects.
While on hormonal drugs one must be careful with heart health due to hypogonadism. Again more test are required periodically (ECG, Cholesterol, Hypertension, etc.).

I agree with Kongo’s suggestion in changing protocols. You probably know about the ADT3 which may be proper for his status. Nevertheless I would recommend you to research about any possibility of getting your husband into a clinical trial (after certifying failure) using the newer successful drugs in combination. My recommendation is for Abiraterone acetate or Orteronel or MDV3100. You can check for details googling the names. Here is a recent video from Dr. Charles Myers on the drugs;
http://askdrmyers.wordpress.com/2012/02/08/exciting-new-pca-drugs-zytiga-mdv3100/

Still another drug for metastases in bone which has shown high rates of success and soon to be approved, is Bayer’s Alpharadin, which is already available for use as a compassionate drug. (Check for the news in the net)

I agree with you that before embarking on Provenge your husband should get into a second-line HT, with already many years on the run. They complement the LHRH agonist together with Ketoconazole and Leukine (defence against infection by activating white blood cells), but they need more care and vigilance by proper oncologists.
Estrogens patches are also recommended but you need to consider that some trials will not accept guys who have been on them.

Clinical Trials are excellent and safe. The only problem is that some guys are put in the placebo group which is not what one wants. I would recommend that one gets involved only if the doctor can assure that we do not fall in the placebo. You can search typing the drugs name in the provided search engine of the National Institutes of Health (NIH);
http://clinicaltrials.gov/ct2/show/NCT01234311

The book by Dr. Myers may help you understand the facts on HT protocols; “Beating Prostate Cancer: Hormonal Therapy & Diet”.

Hope for the best. Your husband will do OK but he must be vigilant.

Wishing you both the best.

VGama

worry
After reading all the posts, it appears you have gotten some very good advice. I read your profile also. My husband also has prostate cancer and I agree with all the books, it is a "couples" disease and it has brought us closer together.
I have found that researching or reading books or articles published on prostate cancer has, for some reason, made me feel calmer. I feel the more you learn the better informed you are, the better able to question or discuss with doctors.

It sounds like your doctor (not nurse) is well informed and is doing the right thing. However, I'm wondering if you were to call John Hopkins if they would be able to refer you a doctor in your area, (since you don't seem entirely comfortable there). They must have easy access to graduates and their locations.
The idea of a clinical trial sounds great, but I agree, how do you know if you've got the real thing or a placebo?

From one wife to another, keep your chin up around your guy and stay positive. Do your crying in the car or with girlfriends.
They need us to be strong and positive. I'm with you, sending you and your husband many prayers.

ralph.townsend1 said:

provenge vs Zytiga
I look into the Provenge and found out cost$$$$ for me a person on insurance 12K out of pocket. On top removing blood from me and doing voodo to it and rejecting it in me and not sure it will take to the T cell. The Zytiga was more of choice from MD Anderson. I'm into my third week of Zytiga and having some side effects, but not bad! Go back to MD Anderson next week for PSA test. Since March 2010 they kept my Tumor's under control and kept my PSA lower than 3.

Voodo?
Not sure what you mean by Voodo but it is a very, very expensive procedure.

Casadex
Tuff drug, on it for 6 month. Worst side of effect for me was made my diabetesII cause my peripheral neuropathy increase. It damage my nerves, almost to the point I could not walk. It does not do that in all case. I was just lucky :-)

tspoon said:

Ok, now I worry. Monday new
Ok, now I worry. Monday new scans, mets spreading says rad to doc. All results meeting Monday next. Pain is back, has cough, confirmed what I knew in my heart.

New scans
Tspoon

Wait for the results. They are not new to you. Do not be anxious.
You will continue your fight and will do well. Pain may be a cause of the mets at bone. These can be eliminated with focal RT.
Discuss with your doctor about trials with Alpharadin.

I hope you get a good answer and solution to the problem.
Please let us know advancements.

Regards.
VG

captivaguy said:

Provenge
Tomorrow starts my third and last round of Provenge.The last infusion will be thursday.
My oncologist had me apply for financial assistance from the Chronic Disease Fund.
My co-pay is $0. I am sure Medicare is picking up some of the cost.The three sessions cost
$93000.00
I'm praying that it works. I have a lot of living to do.

Talk to your Doctor about Zytiga

According to a media release from Janssen Research & Development (a unit of Johnson & Johnson), an independent trial monitoring committee has advised the company to stop the randomized, Phase III clinical trial of abiraterone acetate + predisone compared to a placebo + prednisone in treatment of chemotherapy-naïve patients with metastatic, castration-resistant prostate cancer (mCRPC).


The phase III clinical studies on abiraterone (Zytiga) both in chemotherapy-treated and chemotherapy-untreated patients have been stopped early due to positive results, so that the patients in the placebo arm may also receive benefits of the drug.The first Phase III study was halted after a clear, median 4-month extended survival point had been reached. So all that be can said from this study is that it gave a median 4-month survival benefit, but this does not tell the real story of longer-term survivors on this drug.For long-term survival we need to look at the survivors from the initial trials. There is at least one 8-year survivor from the original Phase I trial and there are several 4-year survivors from the Phase II trials. There are also many 2-year survivors from the first enrollment of patients into the ongoing phase III studies. Although it is too early to tell the long-term benefits, these are positive signs. These are significant because the trials were carried out in the most difficult of prostate cancer cases, on the most resistant forms of prostate cancer that had failed all other therapies, including docetaxel chemotherapy. The typical average life expectancy of this cohort is about 14 months, so any life extension above that is good

VascodaGama said:

Intratumoral activity of the cancer
Tspoon

I have no words to express my sorry to both of you. The increase in PSA on is status (Gs9 stage IV) indicates that the cancer is above the benefits of Zoladex. Casodex may not be enough too.
I hope I am erroneous and that the situation improves. However, Intratumoral activity seems to be evident and only CYP17 blockers may work (17 alpha-hydroxylase/C17, 20-lyase). Drugs that have shown success in intratumoral fighting are the combination of Ketoconazole with Leukine and Zytiga (abiraterone) with prednisone. There are other combinations followed by some doctors. Chemotherapy is also available.

You need to consult an experienced oncologist the soonest. Try to get information about clinical trials and discuss the matter when consulting.

In this site you can read about Alpharadin in a trial which you may consider;
http://pcribc.org/showthread.php/105-Alpharadin-(Radium-223)-Now-Available-in-New-Orleans‏

I did a research and got the following links;
http://clinicaltrials.gov/ct2/results?term=prostate+cancer

Here is Orteronel;
http://clinicaltrials.gov/ct2/show/NCT01546987?term=prostate+cancer&rank=69

Here is Abiraterone;
http://clinicaltrials.gov/ct2/show/NCT01508234?term=prostate+cancer&rank=125
http://clinicaltrials.gov/ct2/show/NCT00268476?term=prostate+cancer&rank=85

http://bethesdatrials.cancer.gov/

Meanwhile get the lipids checked for any anemia, etc. Using the PSA to access any advance should only be done with intervals longer than 3-weeks, which period may be too long for a status as that of your husband. You surely are anxious and worry but try to do the things coordinately.

This is a difficult moment for you and your family. I have you in my thoughts but I am a layman and powerless to give you any proper advice. I hope you get some comfort from our posts.

Wishing him a recovery.
VG

I am back

13 taxotere treatments. 7 months on Zytiga along with Lupton and now switching to Eligard and we are holding our own. His PSA remains under 5 always but mets spread as one by one treatments begin to fail.

 

This has been hard and I don't ever wish this on anyone. I am tired. He is tired. But we continue on and are grateful always.  It is hard to believe we are nearly 3 yr into this and yet sometimes it seems so much longer. This ages you as a caregiver, 51 and I feel so much older and tireder. 

 

I no longer recognize this man, he has gained 74 pounds, his hair has changed after chemo and practically no facial hair. Yet he remains my hero and is a huge part of my life. 

 

We no longer worry because we know it is coming and do our best to ignore this beast knocking on the door.