YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

EXPERIENCES : DISCUSSION FORUM : FOR THE WOMENFOLK : ABOUT US : UPDATE YOUR STORY : MAIL US : DONATIONS

YANANOW HOME PAGE : DON'T PANIC : GOOD NEWS! : DIAGNOSIS : SURVIVING : TREATMENT CHOICES : RESOURCES

 

PLATINUM

 

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 (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 (<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. J

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.


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 <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.

Tom's e-mail address is: tommie.johnson@gmail.com