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Gleason 10

ascott23
Posts: 16
Joined: Oct 2012

Hi,

I wanted to ask advice and opinions on anyone that has experienced such a high gleason score of 10.
My Father age 60 was recently diagnosed in August 3rd, 2012 with a Gleason score of 10 and a PSA level of 32.
Prior to my Father's diagnosis he had been experiencing hip and spinal pain, painful urination, also rectal pain and bleeding,
His Primary care Physician treated my Dad with Flomax and 2 rounds of antibiotics.
He was then told to get another Colonoscopy which he had performed in June, they found no polyps but did find anal skin tags.
Once the symptoms continued to worsen which included weakness in his legs after standing for a period of time, the Urologist suggested a prostate biopsy.
The night prior to the biopsy my Father took a Fleet enema and that is when the nightmare worsened he was in such excrutiating pain that we had to dial 911 and have him admitted to the local hospital. The ER doctor immediately put a cathetar on my Father. After a few hours of several pain medications and vomiting. They sent my Father home and my Mother was very panicked so we rushed my Father to Walter Reed NIH in Bethesda ,Md. He was admitted , he vomited several times , his blood pressure was elevated, and he was extremely weak from the pain medication which was mostly because of anal pain.
THe Chief of Urology performed a Turp on my Father 2 days later and then came into the waiting room and told my Mother and myself that he found a large mass that appeared to be rare and aggressive. He said that if it is cancer he has never seen anything like it before and his belief was that it was a Sarcoma.
A few days later they performed the biopsy and that is when they discovered that all 16 cores were cancerous and that he has a Gleason score of 10.

My Dad was immediatley put on Casodex 50mg and they have him a shot of Degerelex. He went back to his Oncologist in September and they gave him a shot of Zoladex. His PSA lowered to a 7.5. I have since spoken to his PA and she has told me that my Father may have 2-5 years to live , but in her opinion and based off of a few similar cases more than likely 2 years.
He is due back next Thursday for more Scans and a PSA update.

Since this has all occurred he has been resting at home, does not appear to be in any pain. He does suffer from daily hot flashes, once a week headaches, nausea a couple of times, vomiting once, and anal bleeding just recently but it has subsided.
This is all very confusing for us, cancer does not run on either side of my Family. Also my Father is a strict vegetarian, runs 3 miles a day, and appears to be 45 at least all of my Friends think so.
My Father is retired Army, served 2 years in Vietnam. Which we learned immediately while he was in the hospital that this is where it came from. He has applied for his VA benefit.

My questions are does anyone know what we should expect? I feel as if the Doctors are not being upfront with his prognosis. Everywhere I have searched online very rarely has a Gleason score of 10.

Thank you,

April

dwhite1031
Posts: 26
Joined: Jul 2012

I'm very sorry about your Fathers diagnosis. Let me also ask you to express my sincere gratitude for his service to our nation! Have you considered getting a referral to one of the major multidisciplinary cancer hospitals? I don't know what area of the country you're in, but Johns Hopkins, MD Anderson, Loma Linda are 3 that I'm aware of. I'm a Gleason 9 & currently undergoing treatment at MD Anderson in Houston. I am a strong believer that these multidisciplinary institutions give cancer patients more options & more opportunities for a cure or control of their cancer to maintain of improve their quality of life.
There are numerous folks on this thread that can offer support, help to educate you, and share their experiences. Learn all you can about this disease and the treatment options available for your Father.
God bless!

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

Dwhite,= Right on target!!! I'm head back to MD Anderson on Monday.

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

Ascott23, Check the list of agent Orange condition's and file for everything. Do not wait on anything. Becareful about the VSO and any support group's. Check into a site called WWW.HADIT.COM for the best Agent Orange site there IS!!!! I'm 100% P&T because of them and they have help me with my SSDI!

God bless!!!!

VascodaGama's picture
VascodaGama
Posts: 1728
Joined: Nov 2010

Ascott

I am sorry for the PCa condition of your father.
Gleason 10 cancers are the highest in aggressivity and if metastasized they are difficult to treat with intent at cure. However, there are several ways to control the advance of cancer and many guys live many, many, many, many years above the period suggested by his PA. It all depends on the response of the cancer to the drugs/treatment and how far can your father organism sustain medication or accept their side effects.
Nowadays there are many drugs available to treat PCa, which have shown to be very effective in knocking down the cancer.

The first thing to do is to get proper diagnosis on all the symptoms he is experiencing to make it sure that the prostate cancer is the cause for all the suffering. Your description is confusing regarding the colon treatment and biopsy tumour. Have the doctors perform a colon biopsy too?

The Prostate is located between the bladder and the rectum so that the cancer can metastasize to these organs causing problems/bleeding in urine and stool. The hip and spinal pain could be due to metastases in bone. I wonder what his PSA before the biopsy was.
PSA=7.5 at the one month mark could be regarded as “good” if it comes from above 20. Antagonists (Degarelix) take it down below the 60%. The new shot with the LHRH agonist Zoladex will drive it still to lower levels and the results signals the “beginning” on the control of the cancer,

Image studies may reveal the location of the cancer. I would suggest you to look for modern facilities with the latest types of MRI machines because they got better resolution and lesser false positives. If possible (accepted by the insurance) I would recommend your father to have a PET scan that would provide more details on far metastases. This may rule that cancer is localized and not systemic, and such would assure a better control and, therefore, a much longer period of survival.

At 60 years old your dad is too young to give up. He and your mom may need your help in researching about the problem. I would suggest you to collect past data (results, treatments, illnesses, medications, etc) and prepare a file on everything to show to the doctors he will consult.
Try reading materials on diagnosis and treatments for prostate cancer of high Gleason advanced cases from reliable sites. A good book I recommend is;
“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for systemic cases.

I also recommend that your dad commits to treatments after getting second opinions from specialists. General PAs do not have a clue on prostate cancer. You will need to prepare a list of questions to the doctors so that you can better understand their language. Here are links that will help you to write down your own list;

http://csn.cancer.org/node/224280
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

A compendium on Prostate cancer and care;
http://www.lef.org/protocols/prtcl-138.shtml

I hope your dad improves with the first medication and that your family gets peace of mind.

Wishing the best of lucks.

VGama

ascott23
Posts: 16
Joined: Oct 2012

Hi VGama,

I want to Thank you all for responding to my Post.
I forgot mention my Father's cancer is metastasized to his right hip, lower spine, and pelvic lymph nodes.
His cancer is considered rare and aggressive because of the presentation of the tumor and the short amount of time of the spread within his body.

Just recently has been experiencing shortness of breath when climbing up and down 6 steps within the house.
I discussed his recent symptoms with his PA again and she said that we should rush him to a ER the next time he experiences shortness of breath because it could mean anemia?

Based off of the spread , whatdo you believe his shortness of breath and fatigue are Casodex side effects or Anemia?

Please advise

Thank you,

April

ascott23
Posts: 16
Joined: Oct 2012

Hi VGama,

His PSA initially was a 3 then a month later a 10, and then right before his biopsy and hormone treatment it was a 32.
After the hormone treatment within a month it was a 7.4 PSA.

Thanks,

VascodaGama's picture
VascodaGama
Posts: 1728
Joined: Nov 2010

April

The cancer is responding to HT. The PSA come down from 32 to 7.4 (80%) in one month which is consistent with HT rates and that means success.
If your dad has no other health issue, at the hands of a HT specialist (oncologist) in the administration of the newer drugs and techniques, your dad may expect long terms of survival.
Remember that diagnosis should be subjected to second opinions from specialists before committing.

Regarding the shortness of breath symptom, I would not relate it to the medication Casodex but to the side effect of hypogonadism (low levels of testosterone circulating in the body) caused by the treatment. Fatigue is common and many (including me with 62 y/o) experience shortness of breath after a physical activity such as climbing stairs (but not just 6 steps). A 60 y/o fit guy should be able of running even under HT.

Anemia may cause shortness of breath for the lacking of haemoglobins (RBC). Failure at organs will follow if untreated. That is the reason for the emergency suggested by his PA. In one site they write this;
“…anemia leads to hypoxia (lack of oxygen) in organs. Since all human cells depend on oxygen for survival, varying degrees of anemia can have a wide range of clinical consequences.

Anemia goes undetected in many people, and symptoms can be small and vague. Most commonly, people with anemia report a feeling of weakness or fatigue in general or during exercise, general malaise and sometimes poor concentration. People with more severe anemia often report dyspnea (shortness of breath) on exertion. Very severe anemia prompts the body to compensate by increasing cardiac output, leading to palpitations and sweatiness, and to heart failure.”

http://www.patient.co.uk/health/Iron-Deficiency-Anaemia.htm

I recommend your dad to subject to a testing program the soonest. He may look healthy and fit but behind “the scenes” something may be different and with PCa he will require medications that may interact with other medication taken for other illnesses, and therefore prohibitive.

When caught with PCa, patients should care with important testing aspects; The lipids to look for anemia, diabetes, etc, testosterone test for verify drug’s effectiveness, ECG, etc, for heart health, DEXA scan for bone loss (osteopenia/osteoporosis are a fact in metastases), bone scintigraphy scan and MRIs for metastases, PET/MRI for micromets, PSA for cancer progression, ETC, ETC, ETC.

Diet and physical fitness is a must when on hormonal treatment. It helped me in controlling the side effects without the need of supplemental drugs. Muscle mass is lost so that we need exercising (home or gym workout) even if we fell fatigue.

Here is a link about supplements and diet from the National Cancer Institute titled “An Overview of Nutrition in Cancer Care”, which may be of interest to your dad;
http://www.cancer.gov/cancertopics/pdq/supportivecare/nutrition/Patient/page1#Keypoint5

Can you share more details on the treatment protocol (times and potency of drugs) and other info (clinical stage, path report, etc) with dates so that we may help you?

Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

Wishing a continuous good response by the cancer and peace to all the family.

VGama

ascott23
Posts: 16
Joined: Oct 2012

Hi Vgama,

My Dad was diagnosed August 3rd 2012 with Stage 4 , metastasized prostate cancer, with a gleason score of 10 found in all 16 cores.
The Chief of Urology stated that it was a rare and aggressive prostate carcinoma as well as his Oncologist.
At Walter Reed/ NIH they work in a team environment so he consults with his Prostate Oncologist, Chief of Urology, and a PA.
His PA works directly with his Prostate Oncologist, hence why she gave me a more descriptive prognosis.
He received his first round of HT while still in the hospital which consisted of Casodex 50mg and Degerelix, which immediately brought the PSA down from a 32 to a 7.5. His medical team then injected him with Zoladex which will last for 3 months.
However he has experienced side effects such as shortness of breath, once a week headaches, nausea twice, hot flashes daily, and 2 weeks ago he had rectal bleeding which we believe is from the tumor because it has also invaded his rectal wall.

I am just trying to know what to expect in the future it was very scarey watching my Dad ball up in a corner on the floor July 27th until the Ambulance arrived. He had been in excruitating pain off and on since March of 2012. This Cancer is very aggressive and I just feel that no one is being honest with us as far as his Doctors only his PA has reached out to us.
What are your comments or suggestions what can we expect in the future with this type of diagnosis?

I am very greatful for you responding and providing information to me and my Family.

Thank you,

April

ascott23
Posts: 16
Joined: Oct 2012

Hi Vgama,

My Dad was diagnosed August 3rd 2012 with Stage 4 , metastasized prostate cancer, with a gleason score of 10 found in all 16 cores.
The Chief of Urology stated that it was a rare and aggressive prostate carcinoma as well as his Oncologist.
At Walter Reed/ NIH they work in a team environment so he consults with his Prostate Oncologist, Chief of Urology, and a PA.
His PA works directly with his Prostate Oncologist, hence why she gave me a more descriptive prognosis.
He received his first round of HT while still in the hospital which consisted of Casodex 50mg and Degerelix, which immediately brought the PSA down from a 32 to a 7.5. His medical team then injected him with Zoladex which will last for 3 months.
However he has experienced side effects such as shortness of breath, once a week headaches, nausea twice, hot flashes daily, and 2 weeks ago he had rectal bleeding which we believe is from the tumor because it has also invaded his rectal wall.

I am just trying to know what to expect in the future it was very scarey watching my Dad ball up in a corner on the floor July 27th until the Ambulance arrived. He had been in excruitating pain off and on since March of 2012. This Cancer is very aggressive and I just feel that no one is being honest with us as far as his Doctors only his PA has reached out to us.
What are your comments or suggestions what can we expect in the future with this type of diagnosis?

I am very greatful for you responding and providing information to me and my Family.

Thank you,

April

ascott23
Posts: 16
Joined: Oct 2012

Hi Vgama,

My Dad was diagnosed August 3rd 2012 with Stage 4 , metastasized prostate cancer, with a gleason score of 10 found in all 16 cores.
The Chief of Urology stated that it was a rare and aggressive prostate carcinoma as well as his Oncologist.
At Walter Reed/ NIH they work in a team environment so he consults with his Prostate Oncologist, Chief of Urology, and a PA.
His PA works directly with his Prostate Oncologist, hence why she gave me a more descriptive prognosis.
He received his first round of HT while still in the hospital which consisted of Casodex 50mg and Degerelix, which immediately brought the PSA down from a 32 to a 7.5. His medical team then injected him with Zoladex which will last for 3 months.
However he has experienced side effects such as shortness of breath, once a week headaches, nausea twice, hot flashes daily, and 2 weeks ago he had rectal bleeding which we believe is from the tumor because it has also invaded his rectal wall.

I am just trying to know what to expect in the future it was very scarey watching my Dad ball up in a corner on the floor July 27th until the Ambulance arrived. He had been in excruitating pain off and on since March of 2012. This Cancer is very aggressive and I just feel that no one is being honest with us as far as his Doctors only his PA has reached out to us.
What are your comments or suggestions what can we expect in the future with this type of diagnosis?

I am very greatful for you responding and providing information to me and my Family.

Thank you,

April

djs123
Posts: 102
Joined: Jan 2012

Hi April

I am so sorry to hear about your father, he is young and should not be going through this. I am sorry for your family as well it's the most horrible news to hear. I can't really offer you any advice. You've been advise well by several others, but i wanted to offer my support.
My husband is a gleason 9 and is now suffering shortness of breath also. He was diagnosed in January, had 40 radiation treatments and has been on Lupron (HT) since February. Aside from the fatigue he does not have much pain. It's just slowed him down alot.
He had a catscan on Friday (which was done because of a sore throat and shortness of breath and fatigue), it was discovered that quite possibly the cancer has spread to his lungs. I pray not, but neither one of us have given up hope and we won't.
We are going to actively pursue whatever treatments are available.
I imagine you've had a second opinion to confirm everything. it's important you're all comfortable with the treatment recommended.
There are so many books out on prostate cancer. I read almost everything published and scoured the internet to gain as much knowledge as possible on the subject. If you haven't done so yet, suggest you do it. It will give you a sense of control in a situation over which you have really have no control. However, understanding what is happening and what the options are and being able to communicate intelligently with the physicians is very important. I would recommend that you record all your doctors visits so that you can review everything after you get back home. I have found that so useful. Even though there are two of us at all the appointments, we're so nervous sometimes we don't hear things or misconstrue things.

I wish you the best and am praying for all of you. God bless.
PS - This list has helped me tremendously, particularly at the beginning when I was so confused and felt so overwhelmed. I suggest you post as often as you need too.
And. Remember stay positive
best
djs

ascott23
Posts: 16
Joined: Oct 2012

Hi DJS,

I am so sorry that you and your husband are currently experiencing this horrible disease.
Its like once my father was diagnosed we were (myself, sister, and mother)as well.
There is not a day that goes by that I do not spend researching online.
This is just so unfair, I cannot believe this happening.....

This Thursday we have a Doctor's appointment for further blood tests , namely his PSA will be checked.
Today my Mother took my Dad to his PCP in order to have his RBC checked.

I wish you the best as well.

April

djs123
Posts: 102
Joined: Jan 2012

April

Good luck on Thursday. You're right, it's a family disease for sure. I'm sure your dad is very comfortable and grateful for your support.
Keep us posted.
Best to you...God bless
d

Samsungtech1
Posts: 351
Joined: Jan 2011

April,
I read, after I was diagnosed, that extended exposure to AO causes prostate cancer to metastisize at the beginning. Mine went to the lungs. My urologist disregarded it because he did not believe in AO. After my surgery and rad I started feeling a burning sensation in lungs. Mentioned to Urologist, but he let it go. Finally walked into an ER and asked for an x ray. After x ray doc said CT scan. They found five nodules in lungs. Had a really painful biopsy to determine what it was, prostate cancer, and then we just watched it for half a year. I went to six months between ct scans. Next scan my nodules had doubled in size. Had what they call radiosurgery. The nodules have disappeared for now. Lungs burning again so will see with next scan. My Onc thinks I can beat this, radiologist said five years tops. This is about the best odds I can expect. VA says 2.88 years average. No one really knows. Diet and exercise are important. Diet especially. Vasco's advice about Dr. Myers book is right on. He explains diet to you in easy terms. Get the book.
Good luck to your dad. I wish you all well

Mike

newporter
Posts: 5
Joined: Jun 2012

I just happened by this board and read your post. Sarcoma is a very rare form of prostate cancer. These are cancer of the smooth muscle and connective tissue within the prostate and usually by the time they are found they are quite large and cause the symptoms you described. They are so rare that most doctors do not have experience treating them. My suggestion is to seek help from a place like MD Anderson or MSK who have the expertise to treat this rare form.

I am not in healthcare and this is just a layperson's opinion.

ascott23
Posts: 16
Joined: Oct 2012

Hi,

The doctors initially did believe it was a Sarcoma as well. However after they performed the biopsy it was diagnosed as a carcinoma.
Also the PA said that if it was a Sarcoma then they would do chemo right away.
However I have done extensive research online and it also leads me to believe because of the symptoms and the aggressiveness , I think it very well could be a Sarcoms.

At this point I need my Dad to agree to go to John Hopkins in order to get a second opinion.

Thank you so much for responding to my post.

April

newporter
Posts: 5
Joined: Jun 2012

One suggestion is first send the biopsy slides to Johns Hopkins for a second opinion, then decide where to go for treatment.

ascott23
Posts: 16
Joined: Oct 2012

Monday my Dad went to his PCP regarding the shortness of breath and fatigue.
The results came back this morning, and the lab results are that my Dad's Potassium level is extremely low and his white blood count is also slightly low.
They are putting him on a Potassium Supplement and if the potassium level is not up or stable , they want him to go to the ER in 2 to 3 days?
I am not sure why his Potassium levels are so low, he is thinking its the hot flashes which causes him to loose nutrients because of the excessive sweating.

Again I am just perplexed by all of this.
Has anyone had similar side effects from HT?
Please advise.

Thank you,

April

VascodaGama's picture
VascodaGama
Posts: 1728
Joined: Nov 2010

April

You got good advices from above survivors.
Patients with cancer in advanced status experience pain and several other side effects from the treatment. I am on HT but never experienced the symptoms you describe. In any case, your dad can get side medication to counter the effects of the treatment. Get advice from his oncologist and get second opinions on the diagnosis.

The important is that the cancer responds to the medication and that your dad manages ways to counter the side effects. He may need to find a doctor he trusts and that is good in following all aspects during and after treatment.

What is the HT protocol recommended by his doctor?

The intent in hormonal manipulations is to lower the testosterone absorbed by cancerous cells, killing them by starvation. Probably a protocol of total blockade (ADT3) would work better in your dad’s case. ADT3 is the name given to a triple blockade protocol that includes a LHRH agonist (such as Zoladex) plus an antiandrogen (such as Casodex) plus a 5-ARI (5-alfa reductase inhibitor) similar to Avodart.
These three drugs act together trying to block the production and the feeding of androgens needed for the cancer’s survival. Zoladex will stop the testes to produce testosterone, Casodex works by mimicking the testosterone structure so that it “fills” the cells receptors to block the receptor from absorbing real androgens, and 5-ARI will stop the production of dihydrotestosterone which is a more powerful sort of testosterone.

though, in time the cancer begins producing its own androgens (intratumoral) causing the patient to become refractory. However, when such occurs, a second line of hormonal drugs is taken to address the intratumoral activity. Drugs like Zytiga, Xtandi, etc., make part of such weponery to fight the cancer.
Your dad needs to be fit to counter the effects.

You may search the net typing the name of the drugs for more detailed information regarding the side effects.

Your discussion above on the type of cancer cells in your dad, you may find details in the biopsy's path report. Sarcoma is very rare in PCa cases but possible. The typical type is adenocarcinoma that originates at the epithelial cells (thin layer that belongs to the prostate shell), and these got several varieties (of adenocarcinoma) being some very aggressive.

The potassium deficiency found in his last test could have been a cause from strong antibiotics that are known to cause hypokalemia. Malnutrition (low intake of foods with potassium) could also be the reason.
Fruit, fish, and whole grains are excellent sources of potassium, but the body must be able of absorbing them. Supplements are a good way to solve his problem.
Potassium is needed for proper fluids balance and proper heartbeat. Get advice from a nutritionist.

I hope your dad gets better.
Be confident.

VGama

ascott23
Posts: 16
Joined: Oct 2012

Hi VGama,

Thank you so much for again responding to my most recent post.
The ironic thing in all of this is my Father has been a vegetarian for over 34 years and on occassion eats fish. My Mother is also a registered Dietician with the VA Hospital.

However I did further research last night and my Dad has been on a high blood pressure medication for 5 years, he had a stressful job up until his diagnosis and a long commute.
What I uncovered is this drug is similar to a diuretic and it can cause low potassium.
But I just find it all confusing considering he never experienced any of these symptoms until he was put on HT and diagnosed with Stage 4 Prostate Cancer?

Prior to going into the hospital he had lost a considerable amount of weight of 20 pounds but he has since gained 15 pounds by increasing his calorie intake and of course the HT.

We have a doctor's appt. tomorrow in order to check his PSA level and also Potassium.

Thank you,

April

VascodaGama's picture
VascodaGama
Posts: 1728
Joined: Nov 2010

April

You are right. There are things that one should expect not to occur if one is fit and eats well. I believe that we are what we eat but such did not help in avoiding my diagnosis with cancer.
I am Portuguese and was feed the so much acclaimed “Mediterranean Diet” in my initial period of life. Then after university I moved to Japan where I lived nearly 30 years feeding on micro biotic type of foods (loads of green tee, fish, rice, low fat meats, soja milk, etc). Back to Portugal I continue with the Mediterranean style and the qualities of red wines, nuts and local fruits, whole grain, etc. I always have been physical active, but could not get rid of the cancer. This is a war that has lasted already 12 years, since my 50 years old.

Nobody can negate that my life style is helping in this long fight with the cancer, and the fact is so ironic. I decided to simple follow what I believe and that includes a balanced way of living. PCa gave me the possibility of being closer to my wife and looking in to life with different "eyes". Stress is the worse so that I gave up with my job and retired.

Your dad needs you girls in his care. He is very young but got an advanced case requiring detailed attentions. Combination of drugs can tackle the cancer, but they may interact with other medications for other illnesses.

Medical oncologists are good in targeted treatments and they would be a good choice for consultation and second opinions.
Dr. Charles Myers is my hero in matter related to prostate cancer. He is himself a survivor of the disease and an investigator in his professional life. His videos are very instructive and “spoken” in a patient’s language. You may show them to your dad so that he may comprehend better what is happening inside him.

In his latest video he speaks about combination of drugs to fight the bandit. Here is the link;
http://askdrmyers.wordpress.com/?mkt_tok=3RkMMJWWfF9wsRonuKXJZKXonjHpfsXx6OosT%2Frn28M3109ad%2BrmPBy%2B2YsBWoEnZ9mMBAQZC81x0gNLDuGBeYZP6OBQ

Can you get and share the protocol of treatment suggested by his doctor?

Best.
VGama

ascott23
Posts: 16
Joined: Oct 2012

Hi Vgama,

We received good news today, my Dad's PSA level is now undetectable down from a 7.5 from last month to a 0.13 today! Also his testosterone level is a 2.

His PA agreed that he is responding well to the HT, her only concern is the Potassium level. We will followup with that tomorrow with his PCP. She also said that this is not a Sarcoma because if it were then it would not respond to HT?
I am aware that with my Father's level of PCa and the fact it is now in the bone and lymph nodes that this is only temporary, now the question becomes for how long?

My father is on Casodex 50mg daily, and Zoladex shot that will last for 3 months. We are scheduled to return November 28th for further test namely PSA.

I will take a look at the link you sent and will share this with my Father.

Once again thank you so much for your advice and positive thinking.
You are correct your diet has attributed to your ability to remain stable despite your diagnosis.

Thank you,

April

ascott23
Posts: 16
Joined: Oct 2012

Hi,

It has been awhile since I have posted on this board regarding my Father's condition. As of February of this year my Father's PSA level has gone from 0.004 to 0.22, 0.17, and now is 0.13.

He is also experiencing shortness of breath, when he speaks it sounds as if he is breathy, runny nose, and and a periodic cough?

The doctors at NIH are mainly focused on his PSA level, and he was informed to today that if they see a spike in his PSA again then they will put him on Provenge?

My question is as far as his PSA should the doctors only rely on this as a measure of the disease, and should they request more scans due to his latest symptoms I described earlier?

Once again thank all of you for your comments and suggestions.

 

April 

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

April,

As prostate cancer advances, such as what is happening with your father, PSA becomes a significant tool in measuring the progress of the disease.  When aggressive cancers metastaize beyone the prostate they can affect several organs but common ones are bones, lungs, and liver.  As the HT becomes less effective they must switch to drugs like Provenge which are designed to slow the progress of advanced disease.  Hormone therapy works to deprive the body of testosterone but eventually prostate cancer cells no longer need testosterone to continue to grow and drugs like Provenge are used.  Provenge is not curative.  Unfortunately there are no treatments that can permanently stop and reverse the advance cancer you have described.  

While additional scans might show more areas where the disease has spread, it is unlikely that would change what they would do to treat it.  Significant pain in the joints can be relieved by radiation but it sounds like that may not be his biggest problem at this point.

I hope that a new drug regimen is effective and brings your father some releif.

Best to you.

K

Rakendra's picture
Rakendra
Posts: 98
Joined: Apr 2013

I share some of the above symptoms, like shortness of breath, sniffles, and occasional cough.  Often when I get up quickly I get a bit dizzy and breathless.  However, I still am in the gym five days a week for at least two hours, and there I have no symptoms.  I do a Matrix workout (http://www.dr-ronlaura.com/matrix.html)  I recommend this for Pca sufferers because it is a very excellent work out yet can be done at home with very little weight, even just a broom.  The shortness of breath seems to be inconsistent, and even though my gym workout is pretty extreme, I do not get it there.  With NO testosterone, I have lost 24 lbs of muscle in three months.  Exercise must be a key part of treatment.  It will help keep the body musculature strong which may help the weakened bones.  Endorphins are released which is nature's tranquilizer.  Mental atititude is affected positiively as is sleep patterns.

Exercise is very important for the immune system as well.  It may be difficult for guys over 60 to start an exercise program if they have not been on one before.  At first, it is very trying, but the more one does it, the easier it gets.  And it is ESSENTIAL.  I share your father's diet and exercise habits, and these will serve him well in the future.  Movement is so important at this stage, I hope he is still interested in doing some kind of exercise.  If exercise is not possible, deep breathing and meditation may be of help.

I am stage 4 with matastases thruout my skeleton. My Gleason was 3+4, but I do not trust any Pathologist in Mindanao.

Also, I think that with Pca, you can never know what to expect. Each day is an event and no one can tell what tomorrow will bring.  I have been given 12 to 18 months, but this is just fiction.  It could be five months or five years, and that is true for every human, even those without Pca.  As for myself, I do not see how much time left is nearly as important as what I do with each and every moment.  If there is gratitude and love and true living each moment as fully as possible, this has more reward that living a long time with worry about the future, which, in reality, does not exist for anyone.  The only time that is real is THIS moment.  Enjoy and celebrate every moment you have with your father.  I truly pray at least his unpleasant symptoms will go away and allow him a better quality of life.  His past health habits will work for him, and he is fortunate to have someone as centered as you to care for him.  Best luck for the future, love, Rakendra

ascott23
Posts: 16
Joined: Oct 2012

Hi,

 

I have not posted on here for a while regarding my Father's condition. My Dad is still experiencing shortness of breath, stuffy nose, and he clears his throat a lot. He does continue to walk around his neighborhood. He appears to be in good spirits although I feel most of that is to not worry my Mother.

He had a very strange symptom the 4th of July where one side of his face was swollen for 3 days but he was not in any physical pain. He went to his Primary Care Physician and they did an xray of his right shoulder. His PCP told him that both sides of his face were swollen and they were his glands? The xray of his right shoulder only revealed the onset of osteoperosis but nothing they could really do for the time being. They gave him sinus medication to relieve his sinus congestion and cough. This worked for a month but as soon as the medication was completed the same nasal congestion, occassional cough, and clearing of his throat has returned since last week.

My Dad is due for a series of scans because it has been a year since his diagnosis, and he is taking his PSA test tomorrow. We are all nervous of the outcome. We do not know what the next treatment will be?

 

I want to thank all of you for your advice and sharing your stories with me.

 

April

VascodaGama's picture
VascodaGama
Posts: 1728
Joined: Nov 2010

April

I cross my fingers for a good result from the tests. You and your dad are in my thoughts.

Best wishes.

VG

mrspjd
Posts: 694
Joined: Apr 2010
April,
Thought you might be interested in reading this. Here's a link to one man's story/tx (video & text) about his aggressive fight against G10 PCa: 
"Auckland teacher faces rare cancer, rare treatment"
 
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