Tom Johnson and Betty live in Florida USA. He was 58 when he was diagnosed in January 1996. His initial PSA was 110 ng/ml and his initial Gleason Score_was 7 (3+4). He was staged D4 and the treatment he chose was ADT (Androgen Deprivation Therapy). Here is his story:

In November, 1995, I jumped off a ladder and hurt my back. X-rays by a Chiropractor found that I had a "mild" compression fracture of the T7 vertebra. After initial treatment by him did not improve things, he sent me for an MRI. By this time, I could barely walk, and could not work. The MRI results "strongly suggests metastatic disease which should be further evaluated by a whole body bone scan". The bone scan showed hot spots in my bones all over. The tech said I lit up like a Christmas tree.

The Chiropractor sent me to an MD for further treatment. He ran blood tests and sent me for X-ray cancer screening. The initial diagnosis from the X-rays was bone cancer and I was scheduled for bone biopsy. However, my blood test results came back with a PSA of 110 and the MD sent me to a Urologist for prostate biopsy which resulted in a Gleason score of 7 (4+3). The Uro's dx was metastatic prostate cancer (not told, but probably stage D4) which had spread to the bones and recommended either orchiectomy or CHT (combined hormone therapy).

I decided on CHT and started immediately with monthly Lupron shots, plus daily Flutamide. After 3 months, my PSA had dropped to undetectable (<0.1), most of my back pain had gone away and a bone scan was relatively clear. However, I had nausea and liver damage from the Flutamide, so I switched to Casodex after 6 months. I stayed on CHT for 5 years. I stopped treatment in late 2001, and after a year, my PSA climbed to 1.5 and basically stayed there until early 2005, when it climbed to 3.4 in February and then to 15.0 in May. I went back on CHT with Trelstar + Casodex and my PSA dropped to undetectable again. In May, PSA started to rise (0.9 May, 5.0 July and 18.1 August). I switched from Casodex to Avodart in August. A bone scan in September showed possible mets predominately in the right pelvic bone.

Except for the cancer, my health is good. Blood pressure is usually on the low side of normal. By my choice, I take no other meds or supplements. I try to eat a varied diet with a lot of vegetables and not a lot of meat. I grow as many of the vegetables as I can. I have a four acre lot here in the Florida panhandle, and spend a lot of time outdoors taking care of it.

I have been a member and sometime facilitator of our local Man-to-Man group and think it has been very helpful to me and to others to share our experiences. I recommend a support group to anyone who has this disease and encourage the inclusion of spouses in the group.

There has been a lot of discussion of side effects of CHT. In my case, they have been tolerable.

o Libido - Near total loss of libido, and loss of ability to ejaculate. It returned during my off-cycle '01-'05

o Weight - I lost weight (30 pounds from about 220 to 190) during the 6 months I took Flutamide, but gained it all back plus about 30 pounds in the year after I switched to Casodex, before I determined I had to watch my diet. Since then, I have maintained the weight at about 250 pounds, and I†™m 6†™2†.

o Gynomastasia (enlarged breasts) - They are somewhat enlarged, but never uncomfortable, and never large enough to be embarrassed about on the beach. Basically, I'm just an overweight guy with a belly and fat chest.

o Hot Flashes - I experienced them enough to have to throw covers off at night, and sweat when I shouldn't, but they were never as bad as those my wife was experiencing at about the same time.

o Memory - Who can say? Is it age or chemistry? Sure, my memory is not as good as it used to be, but then I could never remember names, phone numbers or passwords without help anyway. Just the other day, my wife and I both were trying to tell someone about a shrub in our yard, and neither of us could remember it, so I said we both must be affected by the Trelstar. ;>)

o Osteoporosis - My bone density readings have been consistently on the low side of normal for my age since treatment began. I take no meds for it.

My prostate cancer timeline is:

Jan †™91 PSA 0.91

Sep †™91 PSA 0.91 PSA/DRE by Dr. Catalona (St. Louis PSA study)

Nov †™94 †œNormal† PSA by Insurance Blood Test

Nov †™95 Severe Back Pain did not respond to treatment

Jan †™96 PSA 110.0 - Started Lupron + Flutamide

Mar †™96 PSA <0.1

Jun †™96 PSA < 0.1 - Switched to Casodex

Aug †™98 PSA <0.1 - Switched to Zoladex

Aug †™01 PSA <0.1 - Last Zoladex shot, stopped Casodex Nov †˜01

Apr †™02 PSA <0.1 -- Testosterone 54

Oct †™02 PSA 0.72 -- Testosterone 314

Jan †™03 PSA 1.20 -- Testosterone 296

Apr †™03 PSA 1.50 -- Testosterone 493

Jul †™03 PSA 3.00

Sep †™03 PSA 1.70

Apr †™04 PSA 1.40

Sep †™04 PSA 1.30

Feb †™05 PSA 3.40

May †™05 PSA 15.3 †“ Started Trelstar + Casodex

Jun †™05 PSA 0.4

Aug †™05 PSA <0.1

Nov †™05 PSA <0.1

Feb †™06 PSA <0.1

May †™06 PSA 0.9

Aug †™06 PSA 5.0 †“ Switched from Casodex to Avodart, had a bone scan

Sep †™06 PSA 18.5 †“ Appt. with Oncologist

Oct †™06 IMRT for 18 treatments



UPDATED October 2006


I am now a 10 (almost 11) year survivor of metastatic PC. I started a series of 18 radiation treatments to the pelvic/hip area in early October. I'll have a new bone scan and PSA about 6 weeks after completion of treatment. I was also referred to a medical Oncologist who has ordered a CT scan, chest X-ray and blood work.

UPDATED January 2007


I completed my 18 radiation treatments to my right pelvic bone in early November. PSA was 6.4 ng/ml and on Nov. 27 was 1.2 ng/ml. Will get results of next PSA on Jan. 30.



UPDATED June 2007

I recently had my third PSA test results since my last update in January. Tests on Jan. 22, April 11, and June 6 were all <0.1 or undetectable.

I am continuing my ADT with once daily Avodart and Trelstar. On my doctor's recommendation, I switched from 3 month to 1 month Trelstar injections. His reasoning was that we could monitor my condition more closely with monthly visits and monthly PSA tests. Also, some of his patients have reported fewer side effects with the more frequent injections, although I have not noticed any difference.



UPDATED May 2008



My PSA is now almost as high as it was when I was diagnosed - at 96.7.

Since my last update, my PSA record is:

Nov. 07, .2,

Dec. 07, .7

Jan 08, 2.5,

Feb 08, 5.9 -- at this point, I restarted Casodex on my uro's recommendation to see if it made a difference.

In March 08, PSA was 6.3 which seemed to be a reduction caused by the Casodex, but if it was, it was short lived.

In April PSA was 16.0. At that time, I was being tested for a possible stroke, and more concerned about that than the PSA. All tests for stroke or brain tumor were negative, but last week, my PSA was 96.7.

I stopped Casodex on the day of the test. I have an appointment with a medical oncologist, but he won't be able to see me until June 4th. I had my urologist do a new PSA and complete blood work up, in anticipation of it being needed by the oncologist. Also, my uro started me on low dose Ketokonozol (LDK) in anticipation of that action by the oncologist.

I'll update again as soon as I get more information.



UPDATED January 2009



I just received the 7th of eight Taxotere treatments on Jan. 7th, 2009. My PSA is down to 17.8. A chart of my progress for the past year is at here.

In my previous update, I had started Ketokonozol, but my PSA kept rising and I had bad side effects. I felt nauseated all the time, could not eat, and lost about 30 pounds in a month. On July 7, I had an injection of Metastron (Strontium 89), and on the 8th, started a 15 treatment regimen of IMRT to my left hip and right femur. During the radiation treatment, my PSA soared to 822, but we concluded that that may have been an anomaly influenced by the effects of the radiation treatment, as it dropped back to 252.8 before I started any other treatment.

On June 17th I started Zometa infusions to strengthen the bones, spaced at 4 week intervals until I started Taxotere, then they were in conjunction with the Taxotere.

On Aug. 20th, I started a course of 8 Taxotere treatments to be spaced at 3 week intervals. A week after my first treatment, my white blood count (WBC) crashed, I developed a high fever, and was sent to the hospital where I stayed 4 nights and received intravenous antibiotics plus Neupogen treatments. They let me go when my WBC got back to normal. Since then, my doctor typically gives me 5 daily injections of Neupogen or now Luekine during the week following my Taxotere infusion to keep my WBC up.

The side effects of my treatment are:

Loss of appetite during the week or so following the infusion and starting about the third day. It generally recovers about the end of the second week.

Fatigue. After the first several treatments, I recovered about the end of the second week, but have not done so for the past two treatments, the 6th and 7th. My feet and legs are swollen, and when walking, my legs feel like rubber. I can†™t walk 200 yards without having to rest, and even then, I have to take it slow.

Loss of hair. On the 8th day following my first infusion, about 80% of my hair fell out †“ literally †“ I shampooed it , and a big clump of hair filled the shower drain. Since then, I haven†™t lost any more.

Finger and toe nails. I have a tingling sensation in my fingers and toes, and my nails are starting to discolor and come off.

I†™ll have my last scheduled treatment on Jan. 28th and the we will monitor for a couple of months and see how I respond. I will continue to receive the Zometa infusions on a four week schedule, and will get PSA tests prior to each treatment.

Regards, Tom Johnson



UPDATED
November 2009





Update April 26, 2009

I completed my Taxotere treatments on Jan 28th after 8 treatments at 3 week intervals. I expected the side effects to wear off within a few weeks, but I am now 12 weeks post treatment, and still have not recovered fully. My feet and legs feel numb and tingly, and I have to walk with a cane. I have very little strength in my legs. I can†™t stand up from a sitting position without pushing up with my arms. I have ordered an exercise bike to try to strengthen my legs. I try to walk some every day, but have to do it slow. My doctor says it may take 6 months for the neuropathy to go away. He prescribed Lasix, a diuretic, to try to reduce the swelling in my feet and legs, and it seemed to help, but not enough, so he prescribed elastic stockings, which have been a big help. My PSA continues to decline †“ 7.8 last Tuesday. There is a chart of my PSA history

Update November 9, 2009

It is now about 9 months post chemo, and my PSA continues to drop. One month after my last treatment, PSA was 13.5. Last week it was 2.9. See my Picasa web album highlighted above fromm PSA chart. I am continuing ADT with Trelstar and Avodart. My uro†™s theory is that while some of my cancer went hormone refractory, probably not all of it did, so we should continue the ADT to keep the non-refractory tumors from growing. I am still getting a monthly infusion of Zometa.

My neuropathy is still about as bad as ever. My oncologist has referred me to a neurologist, who ran a nerve conductivity test. I†™ll get the results of that next week. I try to walk some every day. I have a trail through my woods that is about 1/3 mile long. I try to make that circuit 2 or 3 times a day, but I can†™t do much more than that. I did put in a mid to late summer garden with corn, southern peas and beans, and that meant running my tiller several times, and tending the plants, which gave me quite a bit of exercise.

My oncologist had me try several different drugs to try to work on the neuropathy, but none of them seemed to help, and something seemed to accelerate the growth of cataracts in both my eyes. Over about a 6 week period, my vision deteriorated to a point that I could not drive and could not read without supplemental light. I had cataract surgery with lens implants, and now I can see better than I can ever remember. No more glasses or contacts!! I†™ll still need Lasik treatment to correct my astigmatism, but I am very pleased with the results so far.



UPDATED
July 2010





It is now about 17 months since my last chemo (Taxotere) treatment. I am continuing monthly Trelstar injections, daily Avodart, and monthly Zometa infusions. I also take Lasix for swelling in my legs, and Megace for a stomach problem. My PSA last week was 3.6, down from 4.2 the previous month. Since my last update, the PSA has kind of bounced around but stayed in the 2.9 to 4.6 range. I am disappointed that it has not gone lower, but encouraged that it has stayed relatively stable. I keep my charts on Picasa updated, so if you are interested, you can see my PSA history there.

I still have the neuropathy in my feet, legs and finger tips. Had an MRI of my lower spine in January to see if there was anything pressing on nerves, but that did not show anything, except the evidence of cancer in my bones. A bone scan last month was essentially the same as one I had before I started chemo. My Rad Onc could not see any reason to try radiation to any of the hot spots yet. He felt it might do more harm than good since my blood counts are still on the low side.

I have put in a garden this Spring, and it produced well. Here in Florida, the heat and bugs are such that gardens don†™t do much in the July to August time frame. I†™ll try to keep the weeds under control and plant new vegetables in a month or so.

I†™m very happy with the cataract surgery I had. I still need the Lasik surgery, but that will have to wait a while as it is not covered by insurance.

Thanks for your good work.

Tom Johnson



UPDATED
February 2011






My medical oncologist nominated me to participate in the Abiraterone clinical trial being conducted by Johnson and Johnson. (Mobile AL is currently recruiting patients, among others). They tentatively accepted me as failing Taxotere because my PSA had risen from 2.9 in September 2010 to 4.9 in October 2010 to 6.9 in December 2010. Three consecutive rises are considered indications of HRPC (Hormone-Refractory Prostate Cancer) and failure of Taxotere.

I went through two weeks of trying to locate my history records, and with the help of my doctors and my bad file system, was able to locate everything except my original biopsy report from January, 1996 when I was diagnosed with metastatic PCa (PSA 110, Gleason 7). Michelle Cramblitt, who is handling the applications in Mobile, made a number of calls, and finally located a copy in one of my doctors records. I went there yesterday (Monday, January 31, 2011) and filled out the forms, met the doctor, gave about a pint of blood to the lab, had an EKG and a echocardiogram, and left. Everything seemed OK. This morning Michelle called to tell me she had received the results of my tests and that she had good news and bad news. The good news was that my PSA was 2.8. The bad was that because of the drop in my PSA, I was no longer eligible for the study.

I am flabbergasted at the PSA results, but pleased it is down. That is the lowest it has been for three years. I haven't talked to my local doctors yet, but will later this week. One lesson learned from this is to always get a copy of all your medical reports, and to file them in a place where you can find them again. My son says he will set up a Cloud file (whatever that means) on his network with all his family's reports. For anyone who's interested, the study is recruiting patients at many locations, and they want as many patients as they can get.

The Mobile study center is located at Providence Hospital Cancer Center. If anyone is interested, I'll be glad to provide the address.

Later: Monday, February 7, 2011, I had another PSA test at the local lab, mostly to confirm that the result from the Mobile lab was not an anomaly. My PSA was 2.5, down from 2.8 at the Mobile lab a week earlier.

Regards,

Tom Johnson Crestview, FL



UPDATED
June 2011





Last Christmas, I read that Megace could interact with the androgen receptor on some PC cells and cause them to grow. I stopped taking Megace and the next month my PSA dropped to 2.8 (knocked me out of the Abiraterone trial).

Since then, my PSA has continued to drop to 0.4 yesterday, June 14. I met with my doctor today, and he says the only thing he can attribute the drop to is my stopping the Megace. He has scheduled me for a bone scan next week since I haven't had one for over a year, but otherwise, he recommends we just continue to monitor the PSA monthly.

PSA is climbing so I am starting on Zytiga plus Prednizone. No other symptoms.

Have been on Zytiga for 2 months. PSA dropped from 6.6 to 3.2 after first month, but has risen to 5.64 after second month. Don't know what this means yet, but will stay on Zytiga for now. Personally, I feel great, and am getting stronger. Still have neuropathy in my feet and legs, but it seems to be getting better also.
I don't know if it is significant, but my Alkine Phosphatase has been declining since I started Zytiiga -- 188 to 164 to 133.

I just received the results of my latest bone scan. My doctor ordered it because my PSA is up again. I have been on Zytiga for 5 months now, but it does not seem to be working the way it should. My PSA was 6.6 when I started Zytiga, dropped to 3.2 the first month, but has been 5.64, 5.98, 5.62, and now 8.32. I expected it to drop to near undetectable.
The result of my bone scan was also disappointing. It states that †œthere has been progression of disease since the previous study† (6 months ago). It further states that †œmost of the right fibula is involved. The head of the left fibula shows abnormal activity. There is more extensive abnormal activity in the left femur. The activity pattern in the pelvis, spine, ribs and calvarium is unchanged but extensive. There is abnormal activity in the right humerus as well as well as in the left humerus probably unchanged since the previous exam.† It also states †œIMPRESSION: WORSENING METASTATIC DISEASE†

My PSA has increased over the past month from 8.32 on July 20 to 8.57 on Aug. 18. However, during that time I had a bone scan which showed increasing metastatic disease with new lesions on my left leg. That scan plus the increasing PSA seemed to show that the Zytiga was not working when taken as directed and convinced me that I needed to do something to change that. Since I have read that only 10% of Zytiga is absorbed when taken on an empty stomach, I started taking it with food. Also, I cut the number of pills I take a day from 4 to 2, and take one in the morning and one in the evening with a glass of chocolate milk (2% milk) each time. I have done this on my own, based on what I have read about absorbtion rates. I use choclate milk because I like the taste.

I started the new procedure on July 31, 2012. I estimate that my PSA would have been 9.52 on that date if it had increased at the same rate as it did the previous month. I also estimate that my PSA would have been 11.48 on Aug 18 if it had increased at the same rate. Therefore, if my assumptions are correct, changing my procedure for taking Zytiga has resulted in a decrease in PSA for the past month to 8.57 from 11.48, or a decline of 2.91.

Last month, my doctor said we should consider Provenge. I think we will wait a few more cycles to see what happens.

PSA is up this month. My Oncologist is recommending I switch from Zytiga to Provenge, and I will have a discussion with that doctor tomorrow. My concern is that I will have to stop prednizone and Zytiga until the prednizone is out of my system, and I see that it is dangerous to stop prednizone without tapering it off and that can take several weeks. That means I will have to be off therapy for several weeks.

Another possibility is MD3100 (I don't remember it's name).

After discussion with my medical oncologist yesterday, we decided to stop Zytiga and procede to Provenge. He said that because I was taking a low dose of Prednisone, I should not have any trouble with withdrawal if I did it over 4 or 5 days. In their practice, Provenge is administered by their radiation oncologist. I met with him this morning and started the procedure to get Provenge. I will have to be off Prednisone for 28 days.

I have been off Zytiga since September 22 and Prednisone since since September 25. My PSA is climbing rapidly and I can't start Provenge until sometime after October 25. The withdrawal from Prednisone has been bad. I was nauseous for a week and still haven't recovered. Over that first week, I didn't eat much and still gained 10 pounds. Last week, we went on vacation with our son and his family and had a great time, but still couldn't eat much, and lost 10 pounds.

I stopped Zytiga and Prednisone Sept 22 to be steroid free before starting Provenge. However, I have not been able to start the Provenge because my insurance did not approve my treatment until yesterday, so I have been off Zytiga for 8 weeks and my PSA is climbing rapidly. Now I am scheduled to start Provenge with the blood draw on December 3. However, due to the holidays, they are compressing the schedule from the normal 6 weeks down to 4 weeks, and I will complete the treatment on December 24, Christmas Eve.
Complications have been that my blood hemogloblin was low and I had to have a blood transfusion on October 31, Hallowene day! Then I found out that my insurance had not approved the procedure.
On November 26, I will have to have a Groshong catheter implanted (my doctor's preference just to be sure there won't be trouble with the blood draw), and another blood test. My doctor believes my hemogloblin will again be low and I'll have to have another transfusion on the 27th or 28th before starting Provenge on December 3.
At the time I start Provenge, I project that my PSA wil have climbed to 81.5.

On my last post, I was scheduled to start Provenge treatment. However, I developed an infection along with low hemoglobin level, and was sent to a hospital instead where I was treated with IV antibiotics and blood transfusions, and spent 9 days in the hospital and another week at a rehab center to get my strength back before I was released to come home, where I am continuing therapy to build my strength back up. Because of this, the Provenge treatments are indefinitely postponed for now. Instead, my doctor has put me on Xtandia which is 4 large capsules daily. I have been taking that for 6 days now, and so far, have not had any severe side effects, except perhaps some hot flashes at night (night sweats) but those have not been bad yet. I will get blood work with a new PSA reading next Monday, and post the results then.

Can this be real? I just had a call from my doctor who said my psa from bloodwork today was 8.64. That is down from 84.66 on November 20th. I started Xtandi 11 days ago, and Dexamethasone 3 weeks ago.

After another week on Xtandi, PSA continues to drop. My doctor said he can't explain it, but don't change a thing.

Just hope this short term downward trend continues. I feel great and my blood count numbers are better also. So far I am not experiencing any of the listed side effects except occasional insomnia.

After about 6 weeks on Xtandi!

PSA continues to drop while on Xtandi. Doctor advised tapering off Dexadron because of some studies showing lower survival rates with steriods in combination with Xtandi. Also set up an appointment with a neurologist to see what might be done about neuropathy in my feet and legs.

Disturbing rise in PSA while still on Xtandi. I have been tapering off Dexadron this past month. Also met with a neurologist who prescribed gabapentin for my neuropathy.

Big jump in PSA this month while still on Xtandi. My Oncologist recomended restarting Decadron. Also, after trying Gabapentin as recomended by a neurologist, I could not tell any difference, and it made my legs swell even more! I tapered off it this past month, and just finished doing that. I'm hopeful that going back to the Decadron and stopping the Gabapentin will reverse the PSA upward trend. I won't consider anything else until at least my next PSA test in 4 weeks.

Just got my latest PSA results †“ 2.31 after 5 1/2 months on Xtandi. Big relief! PSA going back down. Also edema is about gone. Still have neuropathy and looks like that is a permanent condition.

PSA up again, but no change in treatment. Will let it ride until next blood test on July 30, and doctor visit on Aug. 2.
Last time, doctor suggested we might try estrogen patches as an addition to therapy.

PSA up again. I'm still taking Xtandi. My doctor wants me to start Xofigo, and I have an appointment with a radiation oncologist for Monday, August 5th. We don't want to repeat the problems of last fall when I was trying to get Provenge, and had to stop my Zytiga treatment, then could not get Provenge after all, and ended up in the hospital.

My Xofigo treatment had to wait until my doctor got approval to administer it. I will start the treatment on September 5, 2013. Meanwhile, I will continue daily Xtandi and Avodart pills, and Lupron injections every 3 months. I had a bone scan this month that showed some improvment over the one I had a year ago, but which does show some involvment in the left and right jaw bone. Therefore, we decided to stop Zometa treatments for now.

Just received my first Xofigo treatment yesterday (05 September). So far, no ill effects, although I do not feel much like doing anything today. No nausea or pain, just lethargic. Yesterday was a long day. Traveled an hour and a half to the hospital, took an hour to get everything set up and injected, then drove around Pensacola for two hours while waiting for our daughter to get off work so we could meet her and her husband for dinner. We did not get home until late, but it was a nice day and a pleasant dinner.
I was the second Xofigo patient for this doctor. The first one was just leaving as we came in. Because of that, everyone was nervous, and it took longer than it normally would. The nurse had trouble finding a vein to put in the IV, then spilled some blood when she finally got it in. They told me the first patient weighted 130 pounds (59 kg), and I weigh 250 pounds (113 kg), so they had to give me 2 vials of Xofigo to make up for the difference in body weight. They also had to decide whether to give the injection for 1 minute for each vial, or 1 minute total, and decided it should be 1 minute each. Then they had a problem switching the vials into the IV. Finally got it done.
So we had a nurse to insert the IV, a physicist to bring in the vials (in their lead lined containers) and to time the injections, the doctor to inject, and a retired doctor who came back to observe this new procedure. After it was done, and I was cleaned up, the physicist had to go over me and everything else with a Geiger counter to make sure we had not contaminated anything.

It's been 4 weeks since my last blood test and 3 weeks since my first Xofigo injection. I will get my next Xofigo injection next Tuesday, 01 October, 2013. My PSA is still climbing at about the same rate as before. It's disappointing, but hopefully after the full series of 6 treatments, things will improve. So far, side effects have been minimal, although my blood count numbers are down, particularly my White Blood count, which is in the critical low range. Also, my peripheal neuropathy seems to be getting worse.

Just got my blood work prior to my 4th Xofigo treatment next week My PSA is still climbing, although the doubling time has increased. My doctor says that the Xofigo manufacturer says we should not be concerned about PSA values until the full 6 treatments are finished.

I had my final Xofigo treatment on Feb. 5th, and will see my oncologist on Feb. 27th for follow-up. My PSA is still rising, but doubling time has increased so maybe that is a good thing.

I will have my 6th and final Xofigo treatment next week. I also continue to take Xtandi daily and have Lupron shots every 3 months. Also, I take Avodart daily. I am very concerned about the rise in my PSA, but am told not to worry about it until the Xofigo treatments are completed and given some time to work.