Confused??

IAJCsgirlfriend

Hi, Iam new here and really glad that I found this sight! Let me first say WOW!!!!
Let me tell you all about my boyfrind and his cancer expirence so far.
Apr.2011- Family doctor does PSA screening.. PSA 43.1 schedules biopsy
May 2011- PSA 45.1 Biopsy test results- A. Gleason score 5+4=9 involving 6 out of 6 cores
(75%,75%,80%,80%,80%,85%) B. Gleason score 4+5=9 involving 6 out of 6 cores
(80%,80%,80%,90%,95%,95%) Scheduled CT & Bone scan
June 20,2011-(my birthday) Had CT & Bone scan and got the results: Found metastic prostate
cancer.
Kidneys- small hypodense lesion measuring 8.0mm in left medial kidney,
non-obstructive stone measuring 4mm in lower pole of right kidney.
Lymph nodes- 7.3mm & 5.5mm right of external iliac artery,
8.2mm & 8.8mm left external iliac vein
9.2mm & 13.5mm to left common iliac artery
Bones- Heterogeneous sclerotic lesion- 2.0cm by 1.7cm involving the left iliac
wing tumor
Bone Scan- Evidence of asseous metastic disease in left pelvis, proximal left
femur, L3, & sternum
July 2011- PSA 60 Was told the ONLY treatment for him at this time was to start hormone
therapy that day. We were told if we choose not to that the Dr. guaranteed that within 6 months he will back a bone that won't heal and within 6 months from that he'd be dead. No joke that's what we were told. So what could we do but get the injection which was degarelix(firmagon) 40mg/ml injection 240mg scheduled next appointment for 30days

Aug 2011- PSA 4.8 received 2nd dose of degarelix 20mg/ml injection 80mg Dr is surprised
that he hasn't had any bone pain. Dr put him on iron pill due to anemia. Also had him go into hospital 3 times for iron infusions. schedules appointment for 30 days. After this shot he started having lots of hot flashes, and no real injection site pain but he did get to feeling very sick to his stomach after about 30 min. was in bed rest of that day but was feeling better the next day.

Sept. 2011- PSA 3.07 again received degarelix 20mg/ml injection 80mg Iron was alot better
this time but keeps him on the iron pills. schedules 30 days recheck
Oct 2011- PSA 2.27 again received degarelix 20mg/ml injection 80mg Dr still surprised
no bone pain 30 days recheck
Nov 2011- We decided to switch to a Dr. closer to home because we got different insurance.
PSA 2.17
Now this is where I get confused. This Dr. wanted to change him to Eligard injections. He said it does the same thing as the degarelix but that his office chose to use Eligard instead. I didn't know if I liked changing something that still appeared to be working just fine but once again, what could we do at that moment. So he got Eligard injection not sure on dosage and that's when things started to change slowly. He didn't have to go back for 3 months so he was glad about that. Me not so glad. I worry about everything now and never have I been so worried about anything. What if within that 3 months it no longer was working. Won't the cancer start going again. How fast? I was a mess.

Feb 2011 - PSA 2.09 received Eligard injections it seems to be still working but not without him suffering from just about every mild side effect possible. Physical and emotional. I'm pretty strong emotionally but WOW I find myself at almost every minute of the day fighting back tears no matter what I am doing. He's my best friend and the love of my life and watching him go through this has just wrecked my emotionally stable life. I just hate not knowing if he is getting the best treatment possible. We don't have a lot of money and he has medicaid insurance and we live in Iowa. So now we just pray and spend as much time together and hope that we can do this for many years to come.

csnuser

3 months shots and 6 months shots
Sorry to hear about your situation.
For myself, I started with 3 mos shot of Zoladex which was 10.8mg
and when I switched the doctor, new doctor gave me 6 mos shot of Elligard which was 45mg.
The difference was the Zoladex had needle size of toothpick and had to see doc every 3 mos.
Where Elligard 45mg had small needle but it felt like burning sensation after the shot.
Even changing a different shot didn't change my PSA so far knock on wood.
I am still on HT combination of Casosex 50mg , one pill a day and Elligard 45mg every 6 months.
It's been 2 years already and need to take 8 more months to go.

I am surprise to see that only Elligard not Casodex with Elligard.

VascodaGama

csnuser said:

3 months shots and 6 months shots
Sorry to hear about your situation.
For myself, I started with 3 mos shot of Zoladex which was 10.8mg
and when I switched the doctor, new doctor gave me 6 mos shot of Elligard which was 45mg.
The difference was the Zoladex had needle size of toothpick and had to see doc every 3 mos.
Where Elligard 45mg had small needle but it felt like burning sensation after the shot.
Even changing a different shot didn't change my PSA so far knock on wood.
I am still on HT combination of Casosex 50mg , one pill a day and Elligard 45mg every 6 months.
It's been 2 years already and need to take 8 more months to go.

I am surprise to see that only Elligard not Casodex with Elligard.

Knowing details on the problem may relive anxiety
Girlfriend

You know that your friend is a high risk patient Gleason score 9 and with metastases, classifying him in stage IV. The only good thing of his status is that his cancer responds well to hormonal manipulations that can be seen in the decrease of the PSA.
The first thing I recommend is that he gets advice from a oncologist specialized in prostate cancer and targeted medication. He will require constant vigilance in terms of tests not just to care for the cancer but for the side effects of the drugs.

A change from Firmagon to Eligard will not affect is treatment. Both drugs are given with the intent in lowering his testosterone (T) to castrate levels (<0.3 ng/ml) by stopping the production of T at the testes. The only difference may be the side effects which vary among the guys taking the drugs.
However, the mono blockade with Eligard (an LHRH agonist) may not be enough to hold his advanced status. He may need to add an antiandrogen drug similar to Casodex or get the newer CYP17 enzyme inhibitor drug similar to Zytiga.
Some doctors recommend in stage IV patients to start chemotherapy or a combination of chemo plus hormonal.

Your boyfriend could as well check for clinical trials that use the latest drugs. These trials are safe, free and excellent for advanced cases. The only problem is if one is set to the placebo group. In case he sees it as an opportunity, I would recommend you to accept the trial only if assurances are given by his doctor that he would take the drug (not a placebo).
In particular I would recommend him to look for trials with Zytiga (abiraterone acetate), MDV3100 and/or Orteronel (TAK-700). Another drug that may be of proper of his status is Xgeva, a human monoclonal antibody (denosumab) medication used to fight cancer in bone. The latest to care for bone metastases is Alpharadin from Bayer, which is now applying for approval by FDA.
Here are the links (use the search engine on the site);

http://clinicaltrials.gov/ct2/show/NCT01288911?term=mdv3100&rank=7
http://clinicaltrials.gov/ct2/show/NCT01193244
http://clinicaltrials.gov/ct2/show/NCT01393730?term=abiraterone+acetate&rank=8
http://clinicaltrials.gov/ct2/show/NCT01106352?term=alpharadin&rank=1

Here are the drugs;
http://www.jnj.com/connect/news/all/zytiga-abiraterone-acetate-receives-fda-approval-for-treatment-of-metastatic-prostate-cancer-after-priority-review
http://www.medscape.com/viewarticle/757883
http://www.erasmusmc.nl/urotrials/pca/TAK700prechemo/
http://www.press.bayer.com/baynews/baynews.nsf/id/Alpharadin-Significantly-Improves-Overall-Survival-Phase-III-Trial-Patients-Castration-Resistant
http://www.xgeva.com/


This all may be confusing to you but it means that your boyfriend got many possibilities in treatments. Surely he should do it coordinately and under the care of a proper oncologist.

I am also on HT and have decided to follow a caring protocol that includes tests and checkups for the progress of the treatment and its side effects. Some drugs interact with others that I may require along the years in treatment, particularly heart health, liver and kidneys. Bone loss is very common in HT patients so that an added bisphosphonate will be required to avoid deterioration. Changing diets and physical fitness has help me in countering HT's side effects.

He should get tested now for bone densitometry, testosterone, DHT, PAP, and lipids.

Be confident. He will do ok.

Welcome to the board.
VGama

IAJCsgirlfriend

VascodaGama said:

Knowing details on the problem may relive anxiety
Girlfriend

You know that your friend is a high risk patient Gleason score 9 and with metastases, classifying him in stage IV. The only good thing of his status is that his cancer responds well to hormonal manipulations that can be seen in the decrease of the PSA.
The first thing I recommend is that he gets advice from a oncologist specialized in prostate cancer and targeted medication. He will require constant vigilance in terms of tests not just to care for the cancer but for the side effects of the drugs.

A change from Firmagon to Eligard will not affect is treatment. Both drugs are given with the intent in lowering his testosterone (T) to castrate levels (<0.3 ng/ml) by stopping the production of T at the testes. The only difference may be the side effects which vary among the guys taking the drugs.
However, the mono blockade with Eligard (an LHRH agonist) may not be enough to hold his advanced status. He may need to add an antiandrogen drug similar to Casodex or get the newer CYP17 enzyme inhibitor drug similar to Zytiga.
Some doctors recommend in stage IV patients to start chemotherapy or a combination of chemo plus hormonal.

Your boyfriend could as well check for clinical trials that use the latest drugs. These trials are safe, free and excellent for advanced cases. The only problem is if one is set to the placebo group. In case he sees it as an opportunity, I would recommend you to accept the trial only if assurances are given by his doctor that he would take the drug (not a placebo).
In particular I would recommend him to look for trials with Zytiga (abiraterone acetate), MDV3100 and/or Orteronel (TAK-700). Another drug that may be of proper of his status is Xgeva, a human monoclonal antibody (denosumab) medication used to fight cancer in bone. The latest to care for bone metastases is Alpharadin from Bayer, which is now applying for approval by FDA.
Here are the links (use the search engine on the site);

http://clinicaltrials.gov/ct2/show/NCT01288911?term=mdv3100&rank=7
http://clinicaltrials.gov/ct2/show/NCT01193244
http://clinicaltrials.gov/ct2/show/NCT01393730?term=abiraterone+acetate&rank=8
http://clinicaltrials.gov/ct2/show/NCT01106352?term=alpharadin&rank=1

Here are the drugs;
http://www.jnj.com/connect/news/all/zytiga-abiraterone-acetate-receives-fda-approval-for-treatment-of-metastatic-prostate-cancer-after-priority-review
http://www.medscape.com/viewarticle/757883
http://www.erasmusmc.nl/urotrials/pca/TAK700prechemo/
http://www.press.bayer.com/baynews/baynews.nsf/id/Alpharadin-Significantly-Improves-Overall-Survival-Phase-III-Trial-Patients-Castration-Resistant
http://www.xgeva.com/


This all may be confusing to you but it means that your boyfriend got many possibilities in treatments. Surely he should do it coordinately and under the care of a proper oncologist.

I am also on HT and have decided to follow a caring protocol that includes tests and checkups for the progress of the treatment and its side effects. Some drugs interact with others that I may require along the years in treatment, particularly heart health, liver and kidneys. Bone loss is very common in HT patients so that an added bisphosphonate will be required to avoid deterioration. Changing diets and physical fitness has help me in countering HT's side effects.

He should get tested now for bone densitometry, testosterone, DHT, PAP, and lipids.

Be confident. He will do ok.

Welcome to the board.
VGama</p>

Thank you
Thank You very much for all of your information!