YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Richard H and Vikki live in California, USA. He was 58 when he was diagnosed in June 2008. His initial PSA was 70.0 ng/ml, his Gleason Score was 3+4=7 and although he says he was staged T2, this seems to be his pathological staging: his clinical staging was likely T1c. His choice of treatment was RALP (Robotic Assisted Laparoscopic Surgery). Here is his story.

Spring 2008: I started having increased problems the spring of 2008 with frequent urination, slow starting and stopping, weak flow, etc. I felt that this was due to too existing nerve damage in my lower back. I was retired from fire fighting after 35 years with a back injury and nerve damage. I now teach at a local college. I live a very active life style.

June 2008: In June of 2008 I met with my doctor for a physical and advised him of the increased symptoms. As part of the physical was the DRE (Digital Rectal Examination), as usual my prostate was slightly enlarged (all my DREs from age 50 showed this enlargement). My doctor ordered as part of the blood work a PSA test. A few days later he phoned and advised of a PSA reading of 70.0 ng/ml, he had also made an appointment with an urologist. The following week I met with the urologist and set up further testing (TRUS and biopsy). Here again another DRE, the urologist advised that along with the enlargement the prostate, the seminal vessels were hard.

August 2008: Flomax, 0.4 mg daily. In August of 2008 I had the TRUS and biopsy. The findings were Gleason grade 3+4 both sides for a score of 7, T2 Nx Mx at this time. My urologist advised that I had a very aggressive cancer and that he felt that we should attack the cancer aggressively. Surgery, EBRT (External Beam Radiation Treatment) and ADT (Androgen Deprivation Therapy). Appointments were set up for a CT scan, bone scan and with a surgeon. The CT scan showed an enlargement of lymph nodes along the left pelvic sidewall, some parenchymal scarring in the right lower lobe of the lung (old scars form phenomena?) and all other areas were with in normal limits. The bone scan was negative. At my meeting with the surgeon he believed that my cancer had already spread to my lymph nodes (due to the CT scan) and that the removal of my prostrate would subject me to undue surgical risks. We decided that I would under-go surgery, but a biopsy would be taken of my lymph nodes. If cancer was found in the nodes, he would stop the surgery.

September 2008: (PSA up into the 80s) Flomax, 0.4 mg daily More testing preparing for surgery. Chest X-ray - clear. Blood work - clear EKG w/Treadmill - clear BP - 117 over 70 Pulse - 68 Lower back injury w/nerve damage General physical condition - excellent

October 2008: Flomax, 0.4 mg daily. Trelstar injection PSA 80. + My doctor is one of the leading Da Vinci robotic surgeons in Central California. Surgery would take place in the morning, an over night stay in the hospital and release the following day. Recovery would be 7 to 10 days with a catheter and staples, minor pain, near total recovery with in 3 - 4 weeks.

Da Vinci robotic surgery was scheduled, and was started as planned. My surgeon did take some node biopsies and they came back as positive. A large volume of enlarged nodes were removed (along left pelvic sidewall) further surgery was cancelled. The only problems with the procedure were the typical problems and irritation from the catheter and Boo Boo the dog jumped on me while I was sleeping and ripped out one of my staples (now have two belly buttons). There was only a little pain from the incisions more of an irritation than pain otherwise no problems.

With in a week I was scheduled to meet with a radiation oncologist. I was put on LHRH analog (triptorelin [Trelstar] once every three months) injection, an anti-androgen (Casodex) a daily pill and continue taking Flomax (0.4 mg daily).

With in an hour of my first injection I started having hot flashes, dizzy and light headed. Wow what a trip. Glad my friends were driving me home. For the first month or so hot flashes was the only side effect. Slowly the other typical side effect started. Fatigue, ED, depression, memory, breasts swelling and tenderness and weight gain. The hot flashes and fatigue were the worst problems with ADT. I am in fairly good physical shape I work out almost daily, hard hiking and weights. I believe that this helps with combating the side effect of ADT.

I was able to return to work after 2 weeks and started riding my motorcycle after 3 weeks. The riding part was a little too soon, I started having abdominal muscle tenderness.

Note: in looking up prostrate cancer on the internet and trying to gain information, I have found confliction information. Such as once the cancer has left the prostate it could not be cured, do not believe everything you read. Evaluate and then evaluate even more.

December 2008: Flomax, 0.4 mg daily ; PSA 0.41

Due to the lymph node involvement my cancer was classified as Stage 4 advanced disease with a high probability of (invisible) micro metastasis.

After meeting with a radiation oncologist, it was decided on Intensity Modulated Radiation Therapy (IMRT) for my treatment. 26 treatments for the abdominal cavity to cover the prostrate/lymph nodes and 17 treatments at a higher dose focused on my prostate. A simulation and set up was completed on December 15th. Treatments started on December 29, 2008. To help keep the bladder and prostrate in place you must drink app. 16 ozs of water and retain it for about an hour and a half (this is while taking Flomax to make you pee). This was a real ordeal for me and others I have spoken to.

For the first two weeks I had no adverse side effects. Then:

Bowel problems: some diarrhoea, blood in stool and after the third week haemorrhoid problems (itch, burn, bleeding and extreme pain) this was treated with suppositories twice daily. Diet helped with these problems also. Bland, no spices diet of rice, bananas, toast and etc. No upset stomach but food does not taste right to me. Loss of appetite.

Bladder problems: often urination and burning sensation. Not bad.

Urinary incontinence: None, not a problem.

Impotence / ED: Along with ADT a definite problem.

Fatigue: Here again one of the major problems, I would drive 45 miles to have my treatment at 0700 and then drive another 30 miles to go to work. By the end of the day I was just able to drive home. I had to nap on arrival at home. Also I was not able to sleep though out the night. Nerves, anxiety, etc were taking their toll.

Lymphedema: Only some slight swelling of my feet.

Memory: Who knows I can't remember.

I was back to work with out any problems other than fatigue.

January 12th 2009 Taken off Casodex due to high liver enzyme count. Trelstar injection, PSA ? Flomax, 0.4 mg daily

February 26th 2009 last IMRT treatment. Flomax, 0.4 mg daily

I was able to work (teach) through out my RT treatments. Classroom was not a problem but fatigue was during field exercises. I am also starting to have some memory loss and not able to concentrate.

After completion of my RT most of the side affects quickly started to diminish. Fatigue continued to be an on going problem. Each week the fatigue was getting a little better, I started to work-out a little more each day. My appetite was increasing and food was starting too tasted good again. I still had on and off problems with haemorrhoids (still use suppositories as needed). And of course ED. As for the ED my doctors were working with me.

May 2009 : Trelstar injection, PSA 0.17, Flomax, 0.4 mg daily

Hot flashes and fatigue, but these start to diminish after the first week of the injection, memory loss, not able to concentrate, times of depression and ED. I have no urinary problems. I am still taking Flomax at 0.4 mg by mouth daily.

I am starting to gain weight even with my work outs. Hiking every day, I try to do 2 -3 hard miles, just short of a jog.

Looking into change of diet, I already eat vegetables, fruits, low intake of fat, etc. I will limit my consumption of red meats and dairy products.

June 2009: Flomax, 0.4 mg daily

Pain to the lower left abdominal quadrant. CT scan showed a new enlarged node along the left pelvic sidewall. The radiologist impression of this node was that it is dying tissue. No other remarkable areas were found. I am starting to think every little ache and pain is from my cancer.

August 2009 : 19th Trelstar Injection, PSA 0.11 Flomax, 0.4 mg daily

Hot flashes, fatigue and minor bowel problems (diarrhoea) but these started to diminish after the first or second week of the injection, injection site pain, memory loss, not able to concentrate, times of depression and ED, no urinary problems. I have started to have rectal bleeding. I have added pomegranate and more vegetable juices and cut out processed sugars in my diet.

October 2009 : Flomax, 0.4 mg daily.

Colonoscopy - clear, no abnormalities. The colonoscopy was done during a time of no rectal irritation. Doctors believe the bleeding is a side effect of the RT. Slight rectal irritation along with the bleeding occurs every two weeks or so and last for a 1 to 2 days.

November 2009 : Trelstar injection, PSA 0.39 Flomax, 0.4 mg daily

Bone density scan- bone density below normal. Hot flashes, fatigue, minor bowel problems but these started to diminish after the first week or two of the injection, injection site pain, memory loss, not able to concentrate, times of depression and emotional stress, ED, no urinary problems.

My PSA has gone up from the August reading, but my doctor is not to concerned. Will wait to see what my February 2010 reading will be.

I have started to work out more longer, harder hikes (with a twenty pound weight vest) and increased my weight lifting routine. I believe that a good, healthy diet and trying to stay physically fit are two way to start beating this disease. You can still have the pleasures of life (beer, steak, cake, etc) but these must be in moderation. Keep a positive attitude!

When I was diagnosed, I was told that (because of the advanced, aggressive cancer) I would start having severe complications due to the cancer with in 24 months. My survival would be less than 3-4 year. I am going to beat these predictions.

 

UPDATED

February 2010

 

 

January 2010 :

In late January I have started to have pain in my left ribs. Last August I was involved in a motorcycle accident and I injured my ribs on my left side. X-rays showed broken bones but I was very sore for several months. I have been re-injuring this area since then.

February 2010:

Trelstar, Flomax 0.4 mg daily, Casodex 50 mg daily. I will also be started on Zometa infusions. PSA 1.33

Because of pain in my ribs and chest my GP had x-rays of the area taken, with the first reading nothing showed. Due to increasing pain my GP had the x-rays re-read and this time fractures showed. He also set up for a CT scan of my chest and a complete blood work-up. This last Monday I had my 3 month Trelstar injection and blood for a PSA test and a full CBC taken.

Today I met with all of my doctors and I received the bad news. My PSA has gone up from 0.39 in November 2009 to 1.33 in February 2010. The CT scan of my chest showed a bone lesion on one of my left ribs. My first appointment was with my oncologist. He has set me up for another simulation preparing me for more treatments (breast tenderness and bone pain). He also started me on Casodex again. While at the oncologist my urologist call and wanted to talk to me. He has set up another CT and a bone scan.

My GP also called me this evening. Due to the bone pain he has prescribed some pain medication. He is also looking into a medical oncologist for me.

Depression and anger has set in very hard.

I have started another leg in my long journey.

 

UPDATED

March 2010

 

 

March 2010 PSA 1.59, Abdominal CT scan: clear, Chest CT scan: lesion to the lateral aspect of the left fifth rib, 4.1 x 5.2 x 4.1 cm with cortical breakthrough, Bone scan: intense tracer uptake in the T5 body, linear shape tracer uptake in the left 5th rib, tracer uptake in the left ischium/pubis.

March 3, 2010 Zometa infusion 4 mg. I have met with a new medical oncologist, due to the aggressive nature of my cancer he has advised to start chemotherapy. I have been on Casodex for 3 weeks and my PSA continues to rise. The oncologist feels that if we try other second line HT drugs that they would work for only a short period of time and the cancer would then progress. He would like to treat the cancer before it progresses further.

I an eligible to take part in a clinical trial, Docetaxel and Prednisone With or Without Atrasentan in Treating Patients With Stage IV Prostate Cancer and Bone Metastases That Did Not Respond to Previous Hormone Therapy - NCT00134056-49503A (Clinical Trial 126969). This is a randomized, double-blind, placebo-controlled, multicenter study.

The decisions continue to get harder and harder. After discussions with others, I have made the decision to try and enter the clinical trial. If I am accepted treatment will start around April 6th.

 

UPDATED

September 2010

 

 

Round 7 Taxotere / Prednisone and Atrasentan Clinical Trial completed today.

The side effects for infusions #5 (July 14 '10) and 6 (August 4 '10) have been about the same, Bright red skin color to face, slight nausea (2-3 min), light headed, taste off with some foods, mucus membrane in mouth started to take on a leather like texture, fatigue, constipation with bloody stool, later slight diarrhea, 2nd degree burn like symptoms on both hands (thumb to forefinger) skin on hands and left forearm, cracking and peeling finger nails discolored, cracking and breaking, some peripheral neuropathy.

Most of these effects are very minor, a new cream for my hands has taken care of the burns/rash, ice is helping some with my finger toe nails and fatigue. Fatigue is the main problem. Some days I am totally exhausted, it’s hard to accomplish anything. My CT scan was clear. The bone scan did show possible new area of activity in the T10 vertebra and 10th rib. Pervious lesions to the T6 vertebra, 5th rib and left hip are smaller in size. MRI of the spine / ribs showed better definition of these areas. The T10 lesion is <3mm, It is believed the T10 lesion has been present but did not show due to size and no activity. It is now showing because there is a healing process.

Due to blood in my urine I had a cystoscopy; scarring in the urethra, scope could not pass sphincter. Scarring due to RT?

Good news PSA continues to drop. Prayers and best wishes to all.

 

UPDATED

January 2011

 

 

I completed treatment number 12 of Taxotere on December 8, 2010. At that time the side effect were about the same. Swelling of my ankles and feet (fluid retention) is the major issue (increased my dosage of Furosemide - aka Lasix) with increased tingling and burning sensations. Fatigue and the loss of strength in my legs is still present (walking most of the time is difficult). All other side effects are so minor or have stopped; I do not even consider them anymore. PSA is holding at 0.14.

I will continue to take part of the Taxotere and Atrasentan / placebo clinical trial. I knew going in that the Taxotere treatments were going to be rough and difficult. Most of the side effects were not bad and were manageable. Starting with treatment # 10 was the most difficult, but by then the end was in sight. The Taxotere treatments did work, the lesions to my bones are stable or reduced in size. The activity in the bone scans appears to be healing to the lesions.

Other changes my urologist has changed me from Trelstar to Lupron every three months.

December 29, 2010- three week follow up. The problems with my legs and feet are still present. I am gaining strength in my legs, I am able to walk short distances and I am able to spend 30 to 45 minutes on an exercise bike several times a week. CT scan was clear, no areas of concern. Bone scan; all lesions are stable in size and activity or reduced in size. My PSA is now at 0.10. My oncologist was on vacation at this visit, the oncologist whom I saw did not want to take me off of any medications I am currently on. I hope that I will be able to reduce or stop taking the 10 mg of Prednisone daily. This should help with the fluid retention.

Prayers and best wishes to all.

Richard's e-mail address is: r.a.halstead@att.net