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Old 04-06-2012, 08:00 PM   #1
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Smile Made It! Done It! Waiting... and the Price

Made It! Done It! Waiting ......., and the Price

I made it! I'm delighted to be able to report that I have been able to extend my vacation from the heavy duty androgen deprivation therapy (hormonal therapy) drugs long enough so that there was enough PSA for a Feraheme USPIO MRI scan to work but not so much that I had to worry about the cancer growing too much. As I understand it, the Feraheme scan will work reliably if PSA is 2 or higher, though it often still works with lower levels of PSA. I did not want to start androgen deprivation prior to the scan as that probably would have quickly driven my PSA down (from around 10.5 currently) to too low a level. My tactics to halt a rise in PSA back in August 2011 included low dose thalidomide with vitamin B6, a switch from finasteride to Avodart, starting a high dose of Celebrex, and keeping up a supportive nutrition and lifestyle program, including curcumin and resveratrol.

Last week I traveled to Orlando to get the Feraheme USPIO MRI scan at Sand Lake Imaging, the only site in the country that I know of which is doing this scan specifically for prostate cancer patients. Now that I have completed the scan, I can restart androgen deprivation when that seems appropriate, probably soon. I am now waiting for results of the Feraheme scan. (The Mayo Clinic in Minnesota is using it for rectal cancer, and the NIH is doing research on it regarding its safety. The latter is puzzling as it has been very widely used for patients with iron deficiency anemia who have kidney trouble.)

That's the short of it. Here's the long version.

For most of the past year I have been aiming toward finding out whether I have "oligometastatic" prostate cancer that could be targeted with special radiation techniques with the potential for a cure. For me, this required a coming together of several developments.

First, the possibility of a cure had to emerge in contrast to a virtually universal consensus of expert doctors that cases like mine involved widespread metastatic cancer that was incurable. This development began several years ago when the concept of oligometastatic cancer emerged for other kinds of cancer. The prefix "oligo" means few, and the idea was that some patients with well advanced disease, especially those who had recurred after local attempts at cure, did not have widespread cancer throughout their bodies as previously believed but rather just a few metastases. A few doctors treating prostate cancer began thinking that substantial numbers of the many thousands of us who were considered to have systemic prostate cancer might have oligometastatic cancer instead. (As with many of us with challenging cases, the bone and CT scans I had back in December 1999 did not reveal metastases, but micro metastases were strongly suspected based on my case characteristics. A ProstaScint scan in January 2000 was negative except for one small spot that was doubtful.)

However, that new insight about oligometastatic cancer that might be cured would have done little good if there were no way to detect the few metastatic spots and also precisely locate them for attempts at curative therapy. These problems have been now solved by the second development: imaging capabilities to reliably detect and locate bone and lymph node metastases for prostate cancer patients. While many of us have had the conventional bone and CT scans for prostate cancer that have been around for many years, both of these conventional scans are often ineffective unless the patient has a well advanced case. The CT scans pick up only fairly large tumors and the technetium based bone scans require about 10% or more involvement of cancer in a bone site before a metastasis shows up. In the past few years, that has changed! The sodium (symbol Na) F18 PET/CT bone scan is a fairly new scan that is much better than the technetium bone scan. For soft tissue such as lymph nodes, other scans were available, such as the ProstaScint and Fusion ProstaScint, but they too were not reliable enough to give us high enough confidence and precise enough location to support curative attempts. In the past few years that picture has changed! For lymph nodes, two new scans look excellent. One is the C11 choline PET scan, and the other is the Feraheme USPIO (Ultrasmall SuperParamagnetic Iron Oxide) high resolution MRI scan, which makes use of a 3 Tesla power magnetic field. For instance, the Feraheme scan can reliably detect and precisely locate (in conjunction with a CT scan) mets as small as 2 mm, and some recent evidence suggests the Feraheme scan has even better resolution than that in experienced hands.

The third development is that techniques have been developed for targeting cancerous lymph nodes with curative radiation doses. This involves the ability to visualize the target for planning, precise aiming, and controlling or adjusting for target motion in real time. I know of only one practice that is now doing this.

Finally, my own challenging case - considered incurable for the past twelve-plus years since I was diagnosed in December 1999, needed to be favorable. Specifically, the intermittent triple androgen deprivation therapy that was my sole therapy during that time (with supporting drugs and lifestyle program; no surgery, radiation or other major therapy) needed to have controlled the cancer well enough that I did not have more than five bone metastases, the threshold number beyond which the cancer tends to be a lot more aggressive. I had a consultation with Dr. Charles Myers, MD, who carefully examined me and reviewed my case thoroughly with the objective of determining whether I was likely to have oligometastatic prostate cancer that could be treated with intent to cure. He concluded I was a good candidate for the Feraheme scan and for a shot at a cure. While there was strong evidence that I still had no bone mets, based on the way I had responded to androgen deprivation therapy over the past dozen years, I had the Na F18 PET/CT bone scan in December 2011 to make sure. The scan indicated I did not have any bone mets! That was reassuring as the scan is a lot more sensitive than the bone scans that are commonly used for prostate cancer patients. On March 29 and 30 I had the CT/Feraheme USPIO scan combination.

The personal price I've paid to follow this course has been light in cancer patient terms, but it has affected my participation on the board and other activities. The main side effect I experience from thalidomide, which I'm convinced is the key that has enabled me to enjoy an extended vacation from Lupron and bicalutamide, is a moderate degree of sluggishness in the morning and, in order to feel alert and sharp, a frequently need to take a nap for an hour or half hour in the afternoon. I can still do things in the morning, including driving, but I take extra care and keep to easy traffic routes. I drove back from Florida in a day and a half, and I deliberately skipped the thalidomide pill on the night before the second leg of the trip - wasn't real eager to see if it affected me while I was traveling at 75 miles per hour. That extra burden on my time effectively shortens my day, and I cannot do many things I would like to do. Bummer!

I'm now waiting for the results of the Feraheme scan. Any positive nodes need to be in areas that can be safely targeted by radiation. I hope to get a preliminary report soon and the final report in a few weeks.

Hoping for a good result,

Jim

 
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Old 04-07-2012, 02:28 PM   #2
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Re: Made It! Done It! Waiting ..... and the Price

Jim,

I don’t visit this site much anymore as I’m now almost 12 years past RRP and my PSA is still zip. Pretty sure I’ve dodged the PC bullet. The reason I dropped in today was to see if anyone was posting about getting or having an AUS to fix the incontinence I’ve been plagued with all this time. I attempted to get a fix on this several times over the years but to no avail. Last week I once again engaged the issue and am now scheduled to have an AUS installed the end of May.

By now our gentle readers are no doubt asking what the above has to do with your post. Well, the reason I had my latest six-year postponement on this issue is because of several other intervening medical adventures. The most important being non-Hodgkin’s lymphoma. After much chemo and radiation, two years of remission have given me enough encouragement to go for the AUS.

However, follicular nHL is not deemed curable so I have regular scans and occasional PET’s to make sure I’m still clear.

Finally, to your post. EXCELLENT as usual! I was not aware of the newer forms of lymph scans until I read your well researched information. On my next onco visit in June I will definitely ask my M.D. about these new forms. As we all know relative to any cancer…if we can’t find it and kill it early…keeping it contained is the next best thing…but you gotta’ know where it’s hiding.

Can’t thank you enough for your work and willingness to share it with us all. Keep on keepin' on my friend!

WE

 
Old 04-11-2012, 08:15 PM   #3
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Re: Made It! Done It! Waiting ..... and the Price

Jim, I'm so hopeful for you that you'll be cured. You continue to be an inspiration to so many out there. Thank you for sharing your experiences.

Regards, Rhonda

 
Old 04-23-2012, 07:17 PM   #4
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Re: Made It! Done It! Waiting ..... and the Price

That is so great Jim. You are truly an inspiration. I bemoan my journey. You humble me.

 
Old 04-23-2012, 07:31 PM   #5
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Re: Made It! Done It! Waiting ..... and the Price

I am curious too. Right now I have a suprapubic catheter but if my urethra reconstruction is successful, I feel fairly certain I may be facing major incontinence. I hope I am wrong but I don't think so. Awhile back when I first mentioned incontinence, I received a reply from a member in Toronto, Canada. He had to deal with a Cunningham clamp for a good while but later got the AUS. He said he couldn't be happier. My doctor here says it is the 'cadillac" of treatment for incontinence and is a relatively simple operation. The only problem is I will have to wait at least a year after my upcoming surgery - if it works out.

 
Old 04-27-2012, 07:16 PM   #6
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Re: Made It! Done It! Waiting ..... and the Price

SUCCESS?

I did not get a preliminary report, but the final report came in the mail today, and I have an appointment to review it next week.

To my layman's eyes the report looks favorable, but the result is not what I had prepared myself for, and I'm not certain that all that looks good to me is good. I had prepared for a few lymph node mets that were targetable with radiation - the good outcome, or a few node mets that were untargetable for safety reasons - the unfavorable outcome. What I think the report says is that no mets were detected! Of course, that would be the best outcome, suggesting that the cancer is now localized. However, I'm uncertain about some language indicating that some nodes were not seen, and I hope to get reassurance about some other details. I'm trying to hold back excitement about what I think the report says.

The report was in five sections. The first described the CT results (first day of scanning) without and with contrast for the chest; the second covered the CT for the abdomen and pelvis; the third covered the Feraheme MRI for the chest, without and with contrast; the fourth covered the MRI for the abdomen; and the fifth covered the MRI for the pelvis. Each report averaged one and a half pages.

I'll know more next week, but I'm encouraged at this point.

Rhonda, bwhitney and mudrunner - thanks for your encouraging words.

Jim

 
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Old 04-27-2012, 10:37 PM   #7
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Re: Made It! Done It! Waiting ..... and the Price

No mets --that's fantastic! If true, all you would need is radiation around the local area to be cured. Amazing!

- Allen

 
Old 04-28-2012, 10:54 PM   #8
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Re: Made It! Done It! Waiting... and the Price

Jim, my fingers and toes are crossed for you.

Rhonda

 
Old 04-30-2012, 04:43 PM   #9
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Re: Made It! Done It! Waiting... and the Price

YES! Great result confirmed!

I'm going to post some details under a new thread.

Jim

 
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