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  R.I.P.     PLATINUM  
This is his Country or State Flag

Tom Johnson lived in Florida, USA. He was 58 when he was diagnosed in January, 1996. His initial PSA was 110.00 ng/ml, his Gleason Score was 7, and he was staged T4. His choice of treatment was ADT-Androgen Deprivation (Hormone). 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 (3+4). 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. 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.

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

You can view a chart of my history online

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 "Normal" 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
Jun '96 PSA < 0.1 - Switched to Casodex
Aug '98 PSA
Aug '01 PSA
Apr '02 PSA
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.

UPDATED

February 2012

Since my last update, my PSA stayed at 0.4 until October when it started to climb (0.7,1.5,2.5 and 4.4 on 1/27/2012). My doctor has prescribed Zytiga, and will start it as soon as it arrives next week.

Otherwise, I am in good health with no symptoms. A bone scan last week showed no change from last June. I still have neuropathy in my feet, lower legs and fingertips that I have had since about my 7th Taxotere treatment.

I am working out on a treadmill 3 times a week and working on my 4 acres of lawn and woods, doing my winter chores. I planted potatoes in my garden last week. I also post my stats on myprostate.eu.

UPDATED

April 2012

Have been on Zytiga for 5 weeks as of April 1, 2012. PSA after 30 doses is 3.3 down from 6.6 the day before I started Zytiga. So far, I have not had any additional side effects from the Zytiga. I am still taking Trelstar monthly and Avodart daily. I still have peripheral neuropathy from Taxotere in 2009.

UPDATED

July 2012

My current treatment is daily Zytiga plus ADHT with monthly Trelstar and daily Avodart.

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 "there has been progression of disease since the previous study" (6 months ago). It further states that "most 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 "IMPRESSION: WORSENING METASTATIC DISEASE"

UPDATED

August 2012

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 as I described in my last update. 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. [This course of action cannot be recommended in the light of the manufacturers warning. E-Letter #5 has a piece on this subject. It is said that the dose can increase fivefold with a low-fat meal and tenfold with a high-fat meal and that this high dosage may result in side effects.]

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.

UPDATED

December 2012

On my last update, I was taking Zytiga and had changed to take it with food because PSA was going up and a bone scan showed increasing metastatic disease. I continued that way until late September. I think taking it with food did change my PSA progression, but it still went up and was 9.94 when I stopped Zytiga and Prednisone. I stopped because my doctor wanted me to switch to Provenge which required me to be steriod free for 30 days. However, due to scheduling and insurance problems, I was not able to start Provenge until early December. Meanwhile, my PSA started a rapid rise, and my blood factors went down, to the point that I got a systemic infection and had to spend 9 days in the hospital getting antibiotics by IV and also getting 4 units of blood.

I posted the following on the PPML and Malecare websites today: Hi, I introduced myself to this group with my note on Friday, Sept 28 about my experience with Zytiga and stopping that plus Prednisone in preparation for treatment with Provenge. As it turned out, due to schedule and insurance issues, my Provenge treatment was delayed and finally cancelled. Meanwhile, my PSA accelerated from 9.94 when I stopped Zytiga, to 14.87 on Oct. 3, 28.51 on Oct 18, 32.46 on Oct 24, and 52.65 on Nov 14. During that time, apparently my blood counts crashed which resulted in my fainting from a combination of low blood pressure and systemic infection. After my second fall from fainting on Nov. 19th, my wife called the EMS folks, and I was transported to the hospital where I was treated with IV antibiotics and 4 units of blood over 9 days. I was suddenly so weak I could not stand or walk without assistance, but gradually recovered enough to leave the hospital and go to a rehab center. After a week there, I was able to go home but with continued treatment with home health services for monitoring and therapy. I am now recovering my strength and able to do most everything by myself.

The hospital stay and subsequent treatment has stopped any consideration of doing Provenge for now. One of my hospital doctors even told me that my PC had invaded my bone marrow so much that it probably would not recover and I should go into Hospice care and not try any further treatments (he is the director of a local Hospice).

However, my oncologist disagreed and recommended I start Xtandi immediately. He also started me on Dexamethasone. In the hospital, my PSA had risen to 84.66 on Nov. 20. I was able to start Xtandi on Dec. 6, and yesterday (Dec. 18) had my first blood work. PSA was 8.64! Is it possible that Xtandi has worked that fast to drop my PSA that far in 11 days? I'll see my doctor tomorrow and get his take, but I am excited about the apparent drop in PSA.

As far as Xtandi is concerned, so far I have experienced no apparent side effects from it. My BP is now about normal. I did have night sweats for the first several nights after starting Xtandi, but those have gone away. I am doing the exercises my therapist recommends without any obvious fatigue, and am feeling great.

UPDATED

April 2013

The following is extracted from my page on myprostate.eu.

31.12.2012 PSA=3.37 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.

21.01.2013 PSA=1.77 After about 6 weeks on Xtandi!

18.02.2013 PSA=1.24 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.

20.03.2013 PSA=1.37 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.

16.04.2013 PSA=4.86 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.

UPDATED

May 2013

Just got my latest PSA results 2.31 after 5 1/2 months on Xtandi. On Nov. 20, it was 84.66 (and rising). I started Xtandi on Dec. 7 and since then my PSA numbers have been:

12/17/12 8.64
12/24/2012 4.77 ALP 597
12/31/2012 3.37
1/21/2013 1.77 ALP 210
2/18/2013 1.24 ALP 145

On my doctor's recommendation, I started to taper off the steroid (Dexamethason) I have been taking. I will get another 3 month Lupron shot in April, and continue taking Avodart daily. Also, I saw a neurologist who prescribed Neurontin for my neuropathy.

3/20/2013 1.37 ALP 113

Neurontin did not help and I began to taper off it. I completed taking the Dexamethason. Concerned about the small rise in PSA.

4/16/2013 4.86

Big shocker on the PSA rise. Also, edema in feet and legs is getting worse. We decided to restart the Dexamethason.

5/24/2013 2.31

Big relief! PSA back down. Also edema is about gone. Still have neuropathy and looks like that is a permanent condition.

UPDATED

June 2014

My last treatment was Xtandi, which I've been taking since December, 2012. Initially, my PSA dropped to 1.24. In August 2013, I started a course of 6 treatments of Xofigo. However, my PSA started rising (to 264 in April). My doctor had me stop the Xtandi, and currently, the only PCA drug I'm taking is Avodart. I started losing strength in my legs, and in early May, I fell twice when my legs just gave way under me. On May 15, I was admitted to the hospital with very low blood counts, particularly low hemoglobin and low platelets. I spent several days in the hospital, then was transferred to a rehab center, where I expected to get some physical therapy. However, because of the low blood counts, they won't take a chance on giving me physical therapy. Now because of my condition, I have been transfered to hospice care, and I hope to be able to go home with home hospice care in the next day or so. Right now, I'm just lying here in the bed, being fairly well tended by the nurses, but unable to get out of bed or do anything else. The food is terrible, and I'm not able to do anything to improve my strength. Sorry for the rant, but I'm disgusted that I can't do more to improve my strength.

[Sadly, we were informed that Tom passed away on 22 Jun 2014]


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