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My father PSA over 3000, lot of pains from bone metastasis

Buffymelb
Posts: 1
Joined: Oct 2011

Hi All

My father got prostate cancer 7 years ago (2004). He got his testicle & bladder removed. The disease got under control after the surgery. But now it came back dramatically. The PSA now is over 3000 and the bone metastasis getting worse. He feels much in pain and now taking Panadol everyday for pain killer. Though he still can walk but getting less active. My dad now got admission at a cancer hospital in Melb. During the time with the hospital, they now give my dad injection for bones strengthen and radiation for pain killing, (not for cancer treatments). The pains sound a bit under control now. The problem is the doctor does not offer him ANY treatment for cancer. He said my Dad got a few months left and nothing can help now.

Should I believe what the doctor said and is there any other suggested option for him now?
Many thanks for your advices.

Quinny

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Quinny

I am sorry to hear about the advanced status of your dad. I wonder if any sort of diagnosis was produced to his present situation in regards to his past surgery of 2004.
I am surprised for his doctor’s comment on “a few months left”. How does he know that? Is the problem only related to prostate cancer or is there other health problem he (doctor) is considering?
Surely I would get second opinions from other physicians before given up on a treatment for the cancer.

To help you in understanding your dad’s conditions you need to share more information on his case. Can you tell us about the follow-ups your dad has done since 2004?
What was his pathological stage after surgery? PSA? Gleason score? Do you have any chronology of the PSA tests since surgery?
Is there any image study (MIR,CT, Bone scan) done resently?
What are his age and any related health problem?

Your father had orchiectomy in 2004 to lower the testosterone in his body (cancer survives on testosterone) but the adrenal glands also produce a low level of testosterone which may have been feeding the cancer during these 7 years. If such is found to be true and no other HT medication was administered, your father’s type of cancer may still be hormone dependent which could be treated/controlled for a certain extent with hormonal drugs. Radiation is also used to kill cancer at bone in combination with HT drugs.

A PSA over 3000 is very elevated but it can be expected in advanced cases. It does not equal to a death sentence. I have read posts of guys on the thousands that successfully have lowered their PSAs to the double digits.

New forms of chemotherapy in combination with drugs that attack metastases in bone have been successful in arresting the cancer too. Xgeva (denosumab) has been used in patients with cancer in bone, attacking the cancer and relieving pain. Jevtana is a newer chemotherapy drug used in patients that have failed other chemo drugs, still prolonging life of patients in advanced status.
Trials is also available where patients get the opportunity of trying newer drugs. They are controlled and safe the only problem is if one is set in the placebo group with no medication.
You could discuss the matter with his doctor and get the opinion from an oncologist specialist in targeted medications for systemic cases, in regards to the options I describe above.

Here is a link regarding treatments for systemic cases;
http://www.webmd.com/prostate-cancer/guide/treating-advanced-prostate-cancer

Here is a link to a booklet related to pain control in metastatic cancer;
http://www.boneandcancerfoundation.org/pdfs/Pain_2011.pdf

I would recommend you to get a copy of this recently published book “Beyond Hormone Therapy – Options for Prostate Cancer Patients” by Dr. Mark Moyad.
This is a good reference book for standard and newer drugs to control prostate cancer (it includes Zytiga and Jevtana).
There are details on the second-line hormonal treatments still in trial and references to immunotherapy drugs as well as chemo-like drugs.

I hope my insights are of help to your quest.

Welcome to the board.

VGama

jogger
Posts: 47
Joined: Nov 2009

Hi, Vasco,

As you have done so many times in the past, you have shared your extensive knowledge of prostate cancer with the original poster and all of us who read this discussion board and for this I want to express my sincere appreciation. I thought that I'd share with you that I am currently "enjoying" (except for the hot flashes) a PSA of .5, having had it brought down from 800 with 16 months of treatment with Degarelix (Firmagon. I am now on vacation from the shots. My doctor hasn't yet indicated at which point after the inevitable rise in PSA he would have me continue treatments, but he has said if I go back on the Degarelix, rather than, say, Lupron, he would have to give me the initial double injection. Incidentally, my primary doctor would be willing to give me testosterone, based on findings by Dr. Morgenthaler of Harvard. However, my urologist (he's the one who prescribed the shots) says without the hormone treatment the testosterone will go up anyway. My current level of testosterone is 245. I feel sufficiently energetic, but I must say that clearing the frozen snow from my sidewalk due to the unique October blizzard that hit us yesterday was quite a challenge, partly because, I suppose, of low testosterone, the fact that I'm about two years past a triple bypass and I'm 79 years old.

Once again, thanks for being there.

Jack

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Hi Jack – Gianni (Jogger)

Congratulations for the long 6-months vacations Off-drugs.
It is good to read that the PSA kept the level stable. It may be surprising but there are cases of guys where the vacation has been as long as ten years, before restarting ADT again.
Surely no two cases are equal but similar, but in yours the drop from 800 to 0.5 is simply extraordinary. Degarelix gave a punch to the bandit and put in down on the canvas.
The success is reflected in the testosterone levels now at 245 which may have been an increase from a low 20 (castrate levels typical of Firmagon shots). This level will still rise and help you to regain the strength you are looking for. At 79 you better request someone else to shovel the snow from your sidewalk.

I do not recall your Gleason grade/score or treatment apart of the Firmagon. What is your ADT protocol?
In another post you commented that your cancer “... has not spread beyond the capsule...”
Have you found about that through a biopsy or surgery?

I read papers published by Dr. Morgenthaler regarding low levels of testosterone and its relationship with the chances for a diagnosis with prostate cancer. In fact it is a very controversial aspect for patients on ADT. Many believe that feeding testosterone is like lighting a fire for cancer spread. However, TRT (testosterone replacement therapy) when done with the solo intent in restoring the testosterone to normal levels does not jeopardy the treatment but it helps in recuperating from hypogonadism which may be worse than the cancer itself.

It does not seem to me that you are experiencing hypogonadism. However you could use some TR patches (bypassing the liver) to try to increase T to a level near the 350 mark, if you are not feeling OK and your doctor sees it proper.
Dr. Charles Myers who I respect very much for his insights on PCa, recommends close monitoring of the side effects caused by ADT (hypogonadism) and take due counter measures to avoid other health problems. He refers to the so called “Metabolic Syndrome” which is a risk all patients on continuous ADT are subjected to. This is an important matter to you because of your past history with the “triple bypass”.

In an article about the Syndrome-X (as some call it), they say this;
“Metabolic Syndrome is characterized by having at least three of the following symptoms:
•Insulin Resistance (when the body can't absorb blood sugar or insulin properly)
•Abdominal fat - in men this means a 40 inch waist or larger, in women 35 inches or larger
•High blood sugar levels - at least 110 milligrams per deciliter (mg/dL) after fasting
•High triglycerides - at least 150 mg/dL in the blood stream
•High LDL "bad" cholesterol
•Low HDL "good" cholesterol – less than 40 mg/dL
•Prothrombotic state (a precursor of Cardiovascular Disease)
•Blood pressure of 130/85 mmHg or higher

You can listen to Dr. Myers video on hypogonadism and on ADT for the 80th, here;
http://askdrmyers.wordpress.com/?mkt_tok=3RkMMJWWfF9wsRonuq7JZKXonjHpfsXx6OosT%2Frn28M3109ad%2BrmPBy%2B2IACWoEnZ9mMBAQZC81x0gNLDuGBeYZP6OBQ

I started ADT one year later than you with Eligard (leuprolide acetate) PSA=1.0 (T=368). I am ok with a PSA now at 0.03 (T=28), and expect to start my own vacations off-drug in six months time. My second cycle would be restarted at a PSA level of 2.5 ng/ml.
You got a challenging case coming from a high PSA of 800. I wonder what will be your doctor’s threshold to trigger your next cycle.

Be vigilant on any bone loss (bone density scan) and take a bisphosphonate together with your vitamin D3, to prevent osteoporosis and help in your fight against the bandit, if any. (Degarelix probably has kill it already)

Thanks for the beautiful words.

VGama

jogger
Posts: 47
Joined: Nov 2009
jogger
Posts: 47
Joined: Nov 2009

Vasco,

Thanks very much for your input. I'm especially thankful for your link to Dr. Meyer's website. The discussion about metabolic syndrome was enlightening. In my case my sugar is good, my vitamin D is good, my blood pressure is good. I do not score well on my lipids and my belly is about 37 inches around, which to me seems shocking, yet it is still under the indicator for metabolic syndrome which is 40 inches. (I purchased a pair of jeans with an expandable waist). I don't feel fatigue and I'm not depressed. In answer to your question, the fact that my cancer had not gotten past the capsule was determined by biopsy. (Only four cores were taken, but I still hated the pain).** As to my protocol, I've taken Degarelix only, once a month, no surgery, no radiation. Regarding vitamin D levels, about a year ago I was at around 30 when I began taking 2000 units a day. Several months later it was at 70. at which point I starting taking 5000 units. Lo and behold, a recent test put me back down to 50. (same lab) Go figure. My primary care doctor has prescribed 50,000 units twice a week. We'll check again in a month.
Regarding the risk of osteoporosis, about 3 years ago I had a bone scan, and it was clear. My urologist suggested another scan,but I balked at it because it wast was a very uncomfortable experience, having to lie still for half an hour on a hard, narrow bed, which caused considerable pain in my back. I might agree to the test if I could take a Valium.
As to your suggestion that I get someone else to shovel my walk, my son is available, but I just like to get out there and do it myself. Still, I bought a lightweight snowblower, which I expect will be useful ,except for removing the snow pushed back on the driveway entrance by the town snowplow, which invariably is packed snow.

**I have had a cystoscopy done, and, boy, that hurt a lot.

Take care

Jack

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I had gleason of 9 in 2003 and psa is now in the tens of thousands. The numbers mean nothing now. It is the pain that matters and quality of life. The amount of time left should not matter at all. I just plan to hit it again tommorrow, and when I can't I just do the best I can. Taking treatment at this stage is not a good idea unless it would be like radiation for a tumor that is causing pain. These kind of things have helped me. Hospice pays 100% ;for all meds and treatment for pain. They will not pay for curative treatment. I truely hope your dad does not have to take much for pain, everyone has a different experience with cancer. I am now 60 years old and have set New Years Day as my survival goal and if I make that one ;then I will reset for a new goal. All the best.

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