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when to worry

tspoon
Posts: 22
Joined: Aug 2011

My husband was diagnosed March 2011, stage 4 pc. Psa 1913, gleason 9, you get the picture. He is 59 now, and has been on ht since late March. Psa has remained less than 1 with monthly screenings thru Dec. Last week he tested at psa 2.2. Doc says not to worry, we wait till next test March 5, to see how fast it is rising. Zoladex and Xgeva are his only treatments to date. Casadex was dropped after initial 14 days. Says we may reintroduce the Casadex next month. My biggest worry, he started with Dr. Reid, who sold his practice and moved back to the east coast to head up two hospitals. Our new doc, all her experience has been as a hospitalist. Not many choices here in AR. Am I exagerating the worry factor here? Is 2.2 not bad as the nurse said.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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
Posts: 22
Joined: Aug 2011

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.

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

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

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

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.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

Provenge is proven to work!! You have to on a quick notice come back and get re-injection of your blood. Its all about timing. VOOdo bad word, sorry. The Zytiga is new too, and jury still out. In fact isf we are taking these drugs, were in trouble :-)

captivaguy
Posts: 14
Joined: Mar 2012

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.

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

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

tspoon
Posts: 22
Joined: Aug 2011

You have certainly given me a few things to look into VG, and it is much appreciated. His T level was 4 Dec it is now 13. Certainly both these numbers are castration level to be sure, but also a slight rise. I will look into these areas you have given me, it will give me a place to focus my energies while I wait for the next set of tests.

djs123
Posts: 102
Joined: Jan 2012

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's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

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
Posts: 22
Joined: Aug 2011

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.

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

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

Celticroots2
Posts: 43
Joined: Mar 2012

I am hoping that there is an even bigger rush put on this approval by the FDA rather than their "fast track" time frame, which means it should be available by next year. I couldn't get my husband into the clinical trial, unfortunately. My husbands doctor at the VA didn't know about it until I told her but once she did her research she is hopeful and she seems to likes the results of the clinical trials so far.

Somebody needs to tell the FDA that time is of the essence for a lot of patients and based on the fact that doctors in England stopped the trials on a moral basis because of such favorable results should help to push them even faster.

tspoon
Posts: 22
Joined: Aug 2011

March psa was 3.1, he went thru rad treatment to no avail. With his ulceritive colitis thay backed off strength, was a waste of energy. Was told he can expect a year to year a half roughly timewise, casadex 3x @ 50 mg for now along with HT. Quit working April 1, phone call today says disability was approved to start Sept. This is good news, but he is always hurting, always tired. Psa again next Wed, new pains nearly daily sometimes. Yes, I worry, we cry together, but together we make our plans. We whisper deep into the night, and spend our weekends doing off beat things. This Saturday, bathtub races. :-)

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

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%E2%80%8F

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

itzsewme
Posts: 1
Joined: Dec 2013

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.

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