I had a high PSA of 10 in November 2011 but decided at the last minute not to have a biopsy, since I had no symptoms at all and was swayed by the media coverage about overly aggressive treatment based on PSA test results.
My symptoms began, in retrospect, in mid-October 2012: bouts of weakness and some pain in the leg muscles, and profound dysgeusia (food/fluid aversion, loss of any sense of hunger, all tastes askew, which I wrongly thought were all side effects of a strong antibiotic I took in September for a persistent nasal infection). I lost 30 pounds in November from a starting weight of 190, as I was finally undergoing testing. The doctors did not recognize the dysgeusia as a symptom of prostate cancer, so I went through three weeks of exhaustive testing before everything else was ruled out.
Then I had a (thankfully painless) biopsy and an MRI, which confirmed advanced prostate cancer, and a couple weeks later a bone scan showing diffuse cancer already in my skeletal bones. I started treatment with Firmagon (and an appetite stimulant) the last week of November 2012 and dramatically improved the first week. By the end of the the month I felt like myself again, regaining weight, muscle tone and a correct sense of taste. At my next visit, the first week of January 2013, my PSA had dropped to 66 from 273.
My next visit and shot are at the end of April. I feel perfectly fine notwithstanding the usual side effects of the treatment (hot flashes, thinning of beard, weight gain, impotence), which I don't mind even though they are unsettling as the appear. My head is clear and I have been able to work full time throughout, even during the worst of the cachexia. I'm working out every week with a trainer to keep my muscle tone. I'm still experiencing a lot of anxiety from the weeks of trauma in November, but I have a good support system (especially a wonderful wife) and use my writing to work through the latent fear (44 poems since mid-December). I haven't experienced any depression, and I have a very positive attitude. I am very grateful for this site and your company.
Had my 3-month check up and tests on Monday April 22. My PSA was down to 56; testosterone level below 10, which is good. :)
I just got back from two weeks of work in China. Was happy to still have the stamina. Even played squash once.
I am a poet on the side and have written 50 poems since I started my treatment, as a way to try to work through the trauma and changes -- some sad, some humorous, some moving past the cancer. I'm happy to share them with any one who might find them helpful. My doctor said Monday that men with advanced cancer generally don't like to write about what they are experiencing. This site is exceptional.
Hong Kong Harbor
A pebble drops
From the heights
Of The Peak
To the depths
Of all I harbor,
To span this wonder
Of the world,
Sending a ripple
Through the puzzle
Deep in my bones:
Of time and place
In a triumph
Of being well
The last couple weeks have been hard. Some new issues: pain across the lower chest (but doesn't seem to be bone pain); return of no appetite (a pre-treatment symptom of the cancer), and sudden weight loss/loss of energy. Trying to bring my weight and energy back up. I may have to do some new testing before my regular July visit. Waiting to hear back from doctor. The loss of appetite is scary. Bad memories from last November. I hope this is just a blip. I didn't think the diffuse cancer in my bones could hurt me until the therapy stopped working.
Went through multiple tests at hosptal the last two days, June 13-14 (PSA, bone scan and other blood and urine tests, chest xray. At home today. PSA at 253, up from 56 in April. ADT hasn't been working, it seems, since mid-May. Beginning narcotics to ease pain. Seeing main doctor on Monday. Ready for Plan B.
Will be starting with Zytiga (plus predniterone) to supplement the Lupron. I should get the Zytiga in 1-2 weeks and then learn if it is working within another two weeks. I new basis for hope. If it doesn't work, we'll look for Plan C. Right now I feel rejuvenated.
The Zytiga started working after taking it for a week. I'm feeling back to "normal." My PSA has dropped to 164. (Hemogloblin was 9.2, a little low). All my other blood tests were fine. I'm back to working in the office full time.
The Zytiga seems to be working well, though I tire more easily late in the afternoon. That may improve when I resume training, though I understand it can be a side effect of the Zytiga. Generally I have my normal level of energy and I work full-time. At my doctor's visit today, he proposed adding Provenge in combination with the Zytiga. I am still taking one Oxycontin pill/day. I took 3/day in June before the Zytiga started working for pains in my lower chest and lower back (no tumors showed up in the x-ray). I don't think I need any Oxycontin now and expect to be off it next week entirely. I feel no pain at all, even at night. I would need to be off the pain narcotic anyway to start the Provenge, if that is approved. Even with all this happening, I finally feel "normal" for the first time since last November, when I was diagnosed. But I am often tearful in the early mornings, thinking about not being here for my wife and children. I don't know if they are "my" tears or those from the hormone therapy, since I am less fearful now of death.
On June 13 my PSA was 243, on July 9 after starting Zytiga the PSA had dropped to 163. I was hospitalized in August for three days. My PSA on August 6 was 331. On August 15, my PSA was up to 481, my hemogloblin was down to 8 and my plate count was a low 93. The doctor has concluded that the Zytiga is not working, and we've agreed to start chemotheraphy (taxoterre) this week (by August 23).
My heart hides
In your heart,
By its ebb and flow
We will interleaf
Nestled together –
No longer troubling
It's been over a week now since my first chemo (taxotere). No side effects, thankfully. After a transfusion of two units of blood my hemoglobin is up to about 10. My white blood cell count is a bit down, due to the chemo, so I have to be careful about infections. My platlet count is up to about 106. My sense of taste is still off, but I'm eating better. I'm working from home and keeping up with my usual workload. Generally I feel better and more positive about the future. I hope to start building up the strength in my legs again. I can walk okay, but they are like sticks with no muscle. My wife has been wonderful, helping me get through the last two miserable months. I am very lucky.
I have my second chemo treatment (taxotere) this week. My blood test results from yesterday were good: white cell count 4.8; hemoglobin 9.4; platelets 111. Kidney and liver function were good. Calcium was at the lower end of normal.
Today my hair started falling out. Wondering if I should shave it all off now, or wait. It has been thinning for years, but it is still full and will be a surprise to see what I look like bald. I haven't worn caps since childhood. I feel like it should be a badge of honor to wear.
My PSA has dropped to 207 from 481 in the last 30 days. Evidently I'm off to a good start. My first chemo treatment was three weeks ago; my second, yesterday. So the PSA drop is really from just the first three weeks effects of the chemo. I felt very good this morning, as I have since I started the chemo, and worked in the office half the day. Though I'm losing hair, it is slow so far.
My response to the second chemo has been different. The first two days after the chemo I felt good and energetic; though my sense of taste was off, which was discouraging. The next two days I was extremely fatigued and "crashed" in the afternoons. My mood was down and taste way off. I'm starting to feel a little better five days after the second chemo, but still tired in the afternoons and mood/taste still off. No noticeable hair loss since second chemo.
It is now nearly three weeks since my second chemo. I feel good (essentially "normal"), though I tire a little in the afternoons. My sense of taste has almost returned to normal and my appetite is good. I've put on a few pounds, but still very thin. No more hair loss. I feel good enough to plan a few ambitious trips over the next few months, something I could not have imagined a couple months ago. I am still working full-time from home, going to the office once and a while. My book of 81 poems that I started last December and finished in July is now printed and almost ready as an e-book. It has been good for my spirits and some of the poems are being used already by chaplains in cancer therapy. My next project, to keep me looking forward, is a website. I hope the chemo keeps working for some time. I worry because the ADT worked only six months and the Zytiga treatment only two weeks. The chemo has worked six weeks already and I have no pain, so I am optimistic. I've been very lucky.
I had my third chemo yesterday. My blood test results were good, except hemoglobin was low (8.7). My PSA has dropped again to 153, which is good. Feeling good in the morning, but I tire in the afternoon. I'm still working full-time from home. I'm fragile emotionally when my wife is away. My hair loss stopped, so the balding is not noticeable. I'm starting to resume some long weekend trips. My new e-book, Distilled, a series of 81 poems on life with advanced prostate cancer written between mid-Decmber 2012 and mid-July 2013, is now available on-line worldwide at the main on-line bookstore. The writing was good therapy and some of the poems are already being used in chaplaincy programs. The skin temperature changes from the continuing hormone treatment have seemed worse and more frequent during the day during the last few weeks. That's been the most annoying side effect. I had gotten used to the hot flashes until now.
I seem to be responding well to the third chemo treatment, which was five days ago. No new side effects. A day after the chemo, we were able to do a weekend trip up to Boston for my wife to run a half-marathon and to visit the haunts of our courtship decades ago. I did quite a bit of walking Saturday morning, then rested in the afternoon and Sunday on the drive home. I made it into the office on Monday morning. Tired in the afternoon, but still kept up with work. All in all, it was easier than after the second chemo and I am steadier emotionally. Having fun with my e-book.
A mouth sore from the chemo landed me back in the hospital. They discovered my white blood cell count was down to 1. It's back up to 2.3 today (2 yesterday). I hope to get out of the hospital soon. The mouth sore, which was very painful, is almost gone and I have no pain now. They are giving me shots of Neulasta to stimulate WBC growth.
I had my fourth chemo treatment last Thursday. I felt icky Friday and yesterday, probably withdrawal symptoms from reduced daily dose of prednisone (down to once a day from twice) and reduced oxycontin (down to twice from three times/day). Not too bad, but I hope to feel better in a couple days. After my last hospital to improve my WBC and hemoglobin, I was able to do a long weekend in the Bahamas with my family, which was a good break for me and my wife. I was able to get some good exercise, despite the afternoon fatigue. I'm still able to keep up with work from home. I've been very lucky overall with minimal side effects and no tumors or pain, even though the cancer is throughout my bones. I have to hope that the chemo will work longer than the prior two treatments.
My PSA rose from 153 to 184 in the last three weeks. Will have it checked again in a few days, along with my platelets, which were low.
I'm happy that my PSA dropped today to 134, after its jump last week from 153 to 184. My other numbers were okay too, though on the low side.
My PSA jumped yesterday to 233.8, a 100 point increase over the last three weeks after the last drop. Disappointing. This afternoon I had some lower back pain, first since June when the ADT failed. The pain medication has helped. I'm still positive. The long weekend in Paris was a big boost.
Feeling better this morning after yesterday's shock, after getting an okay night's sleep. I know one big jump in the PSA may not mean much, but I was too worn out yesterday from a busy work week and hospital trips for chemo and a shot of Neulasta to process the change, especially after the earlier 30 point jump. My lower back pain is mostly gone this morning, even before taking the oxycontin. The surprise pain was a shock yesterday too. I hadn't had any pain there since June, when the hormone therapy stopped working, so the coincidence was disturbing. I'm trying to focus again on the nice time we had in Paris last weekend and the cruise planned for the end of December. My wife was a big support yesterday, talking me through my fears. I was able to do the same for her during the prior smaller jump. I couldn't keep fighting without her.
The side effects have been mild since my 5th chemo last Thursday. Sleepy over the weekend, but mood fairly stable. I was happy my older son came out to visit. It was good for my wife too. They are now running together.
Heavy nasty phlegm in my throat in the mornings. Taste of food a little off and appetite a bit down. Keeping up okay with work though. Lonely at home in the afternoons. I'm looking forward to the company for the Thanksgiving holiday.
My PSA dropped to 202 yesterday (from 233.8) and the other blood count numbers were okay, though some were on the low side. I feel good, but I get winded easily. The hot flashes are also more of bother.
My PSA jumped yesterday to 288. The PSA has been jumping up and down for a while. The next step is to add back the second prednisone per day and see if that helps, then try the chemo every two weeks rather than every three weeks. If that dosn't work, we'll try Xtandi. I'm still very hopeful but I seem to be moving through treatments at a pretty fast clip this year.
My PSA increased this past week from 288 to 298. Stopping the chemo and moving on to the Xtandi.
I've been approved for Xtandi.
On January 2 my PSA jumped to 377. Clearly chemo therapy was not working. On January 6, I started Xtandi.
[Sadly, we received a message from Neil's wife Margaret informing us that Neil passed away on February 15, 2014]