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Old 11-23-2011, 01:34 PM   #1
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Smile My story, next chapter; also F18 bone scan and Feraheme USPIO scan

I've had a rocky week!

On Monday a week ago, 11/14/2011, my PSA had risen several points to 11.7. While I had expected a rise to about that level at some point, it came a couple of months earlier than I expected, based on my past experience during two previous IADT3 (intermittent triple androgen deprevation therapy) cycles that strectched back to 1999. Here's the setting: I've been on low-dose thalidomide (50 mg daily, plus vitamin B6 in support to minimize the risk of peripheral neuropathy) in order to extend my third off-therapy vacation period of intermittent triple hormonal blockade (off the heavy duty drug Lupron and the medium duty drug bicalutamide while maintaining with finasteride 10 mg, switching to Avodart about a month ago).

As expected, the thalidomide, which I started taking on 7/7, had greatly slowed the rise in my PSA (which has risen from about 5 to about 10 in three to four months - fairly fast, over the past three vacation periods) from 9.76 on 6/22 to 10.97 on 7/26, and then reduced it to 9.48 on 8/8, and further to 8.8 on 9/3. By 11/21 I had been taking thalidomide for about four and a half months, and I expected the drug to work for another month or more, based on the past two times I have used it to extend vacation periods.

However, that level of 11.7 from a week ago was in the range where I had planned to move to another approach, as such a score would suggest that the thalidomide was no longer controlling the cancer. That PSA increase of nearly three points from 8.8 to 11.7 in just two and a half months was also unsettling. I've learned in the past that when thalidomide no longer controls the cancer for me, the change is abrupt. This looked like the end of thalidomide effectiveness for this cycle, and that situation pushed me right into serious thinking and decision making about whether to go for that possible cure that I mentioned in the recent thread on going from incurable to possibly curable.

So this past week I was doing that serious thinking, deeper researching, contacting imaging and treatment centers, trying to get my old bone scan film from late 1999, and thinking through my options. The trouble is that this was all happening before I was ready for it, and it looked like I would be doing some serious staging, including checking for bone mets, right during the Thanksgiving and Christmas period. My wife and I were not happy about that, especially as this is an extremely busy time for a large church project that we coordinate.

Of course the wise course is to get a confirming PSA, and I did that on Monday after a consultation with my oncologist. We went over my options and confirmed the game plan, including a likely F18 PET bone scan for early December.

Yesterday I got the PSA result: 11.57, virtually the same as the 11.7 a week earlier, but a little lower! As my oncologist and I had agreed, that result suggested that thalidomide was still working at least to some extent, and the result was good enough to continue with thalidomide for another month. As planned, I'm also adding 200 mg of Celebrex twice a day to try to slow the increase in PSA. Thanks to some fast work by the doctor's office and mail order specialty pharmacy, I'll be getting the new prescription Friday after missing only one day. (I had not ordered this expensive drug in advance as it looked so likely that I would not be taking it again, so I was sweating the logistics over the Thanksgiving holiday period.)

Has anyone had the new F18 PET bone scan? It looks like that's where I'll be headed in January. It appears that only one local imaging facility offers this scan, and they have had the technology for only about a half year.

Has anyone had the new Feraheme USPIO (Ultrasmall Super Paramagnetic Iron Oxide) contrast high resolution MRI lymph node scan for prostate cancer with Dr. Bravo in Florida? If the bone scan is favorable, I'll probably be headed for that a month or so later. The research team (Bravo, Dattoli, Myers) just submitted four abstracts on Feraheme USPIO for prostate cancer for publication by the Radiological Society of North America. It's possible that the abstracts will be presented at a large medical conference in Chicago next week. If so, that would be the first official public announcement of the research results. It could create quite a stir.

During the past week, since getting that unexpectedly high PSA of 11.7, I've been irritable, have not thought as clearly as usual, and have felt unusually tired. That was especially true yesterday until I got the good news. At once the fatigue lifted, and I felt much better. This experience has been a reminder of what our new participants on this Board go through.

Take care,

Jim

 
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Old 11-23-2011, 03:08 PM   #2
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Re: My story, next chapter; also F18 bone scan and Feraheme USPIO scan

Jim, I'm sorry to hear that this week has been so stressful for you. However, it's good to know that you still have a small respite of time before you have to jump into the next stage of your fight.

You never cease to amaze me at how well thought out your plans are to move forward. I guess, for this Thanksgiving, you can give thanks to the wonderful doctors you have who are helping you make good decisions and getting you what you need in a timely manner. Here on HealthBoards, we can all give thanks to you, Jim, for showing strength and courage in your own personal fight as you, so generously, offer your time and knowledge to those of us who are less experienced in this club that nobody wanted to be a member of. Keep it up, Jim! Hugs, Rhonda

 
Old 11-23-2011, 05:47 PM   #3
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Re: My story, next chapter; also F18 bone scan and Feraheme USPIO scan

Jim, which F18 PET scan? I assume it's not the old FDG-PET, because that's been around a long time. The newer ones I know of are the F18 Choline and the NaF(18) PET scans. The C11 Choline seems to be the best of the lot, but I don't know where you can get that outside of the Mayo Clinic -- possibly Wake Forest University?

I don't know how close you live to Bethesda, Md, but they are doing a clinical trial of feraheme MRI detection of PC. Possibly, you could get in on it, and it might cost less (or be free) vs Sand Lake Imaging. Here's the clinical trial info:
http://clinicaltrials.gov/ct2/show/NCT01296139
(You might have to tell them you're planning on having your prostate removed, even if you're not ;-))

- Allen

Last edited by Tall Allen; 11-23-2011 at 06:09 PM. Reason: added parenthetical

 
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Old 11-27-2011, 03:21 AM   #4
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Re: My story, next chapter; also F18 bone scan and Feraheme USPIO scan

Jim

This is another phase on your journey to success. You surely could continue the path taken along the 12 years (which I believe that would continue the control on the advancement of the bandit), but the meeting with Myers is in your head and you want to take the chance.

Image studies as we know them are not perfect. There is lots of “guessing” in the interpretation of the results. Nevertheless these are important findings (negatives or positives) and you will feel better and less “irritated” when confronting the newer Myers’ standards.
(Remember about our discussions on his approaches where; after changing the drugs (bicalutamide to flutamide) and verifying its success, he likes to increase drugs’ potency before advancing to a “next phase”?)

I read that both F18 and C-11 choline PET Scans are equally sensitive and give similar results. The uptake of the contrast agent by cancer tissues is highlighted indicating “positive”. With the feraheme agent in MRI scans the contrast is lesser in positive tissues (cancerous) that in normal tissue. This may cause erroneous readings giving false negatives in the presence of lesser active cancer cells. It seems that the PSA levels are used as markers for the Fe-MRI test. Higher levels of PSA (above 5) give more reliable conclusions when interpreting the image study. Lower PSAs are related to false positives. An important aspect regarding this test is that two images (MRI) are compared greatly improving and providing a better judgement on the results.

Wishing you the best.

Baptista

 
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Old 11-29-2011, 02:57 PM   #5
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Re: My story, next chapter; also F18 bone scan and Feraheme USPIO scan

Hi Rhonda, Allen, Baptista and others of us who have been following my latest story,

Thanks for your good wishes!

It's odd, but I feel my feet are again firmly on the ground. Guess I better not get another PSA test for a while so I won't upset things! Seriously, I'm making plans.

Allen - about the bone scan: That F18 scan is quite new, and it is the Na F18 PET bone scan (Na for sodium for those not so used to the Periodic Table). Usually we think about the FDG PET scan, which is good for showing sugar metabolism, and hence cancer activity, for many cancers and for well advanced or highly aggressive prostate cancer, but is just about useless for mild and moderate prostate cancer as there is negligible sugar metabolism in those situations for prostate cancer, in contrast to sugar metabolism in many other cancers. As I may have mentioned, my local oncologist had not heard about the new F18 PET bone scan either, though one of our main radiation doctors in the same building was the person who alerted me to local availability of the scan. That indicates how new it is. I've been hearing favorable mentions of it, and my impression is that it is clearly superior to older bone scan technology. However, I want to learn more about it.

-about the Feraheme USPIO scan and NCI clinical trial: Your news about the trial is so welcome! For more than a decade now, out of necessity I've been following doctors who sometimes are at the leading edge of medicine, and it is reassuring when the official US medical research agencies are looking in the same direction. (The "necessity" is that the more conventional docs said I would be dead in a few years - not appealing! ) I took a look at the trial, and, as you note, it is only for those headed for surgery - definitely not me. I am curious what they will do in the trial if they find a cancerous node that is beyond the customary reach of surgery. I'm thinking they will not perform the surgery and will switch to radiation instead (or even switch to therapy that can treat the whole body - likely androgen deprivation therapy), but that is not spelled out in the trial notice. It's conceivable that the precise location information resulting from the scan will permit surgical excision of cancerous nodes. That would be similar to what is being done now with radiation at the Dattoli Cancer Institute, but the Institute radiated not only the lone cancerous node but also its neighbors in one case I know about. Even though the Feraheme scan apparently reliably detects extremely small tumors, they are still of visible size, and I'm thinking the doctors want to eradicate truly microscopic tumors that could be lurking in nearby nodes. Trying the equivalent with surgery might be impractical, at least as of now. Or, maybe not.

The NCI trial is aimed at determining the best dose of the Feraheme contrast agent for enhancing the detection of cancer in lymph nodes. Comparing their results with the Sand Lake Imaging Center results will be informative, especially as the NCI too will be using a 3 Tesla magnetic field, allowing very high resolution. My impression is that Dr. Bravo at Sand Lake has used just one dose level, at least for the vast majority of patients. Perhaps the NCI will be checking higher doses than are now approved for kidney function and are therefore available "off-label" for imaging. The doses in this Phase I NCI trial are 4mg/kg Fe, 6mg/kg Fe, 7.5mg/kg Fe, but at the moment I'm not sure how that relates to the dosing at Sand Lake. A secondary objective of the NCI study is safety. I'll be giving the NCI study more attention.

Babtista - I can clarify the concept of the Feraheme USPIO scan. You posted this about it:


Quote:
... With the feraheme agent in MRI scans the contrast is lesser in positive tissues (cancerous) that in normal tissue. This may cause erroneous readings giving false negatives in the presence of lesser active cancer cells. It seems that the PSA levels are used as markers for the Fe-MRI test. Higher levels of PSA (above 5) give more reliable conclusions when interpreting the image study. Lower PSAs are related to false positives. An important aspect regarding this test is that two images (MRI) are compared greatly improving and providing a better judgement on the results.
I'm quite confident I understand the Feraheme scan results but am not 100% sure. (My wife would say I'm similarly confident about directions when driving in a strange area, with shaky justification. ) My understanding is that each node presents either as cancerous or non-cancerous, in other words, a presence-versus-absence, on-versus-off type distinction rather than a matter of degree. Based on what Dr. Bravo has said informally, the scan is highly effective at detecting tumors as small as 3 mm, and perhaps even as small as 2 mm. Assuming this is valid, it is a monumental improvement over what accepted imaging can do at present. The key appears to be size rather than aggressiveness of the tumor.

When you considered "that the PSA levels are used as markers for the Fe-MRI test", were you thinking that the new scan uses PSA to form the image? That is not the case; rather, the scanning equipment picks up a signal from the Feraheme contrast agent that is picked up in normal nodes but not in cancerous nodes, with PSA not involved at all. However, PSA is a marker for the scan, as I understand it at this time, in judging whether there is a reasonable likelihood of enough cancer to show up with the Feraheme scan.

This is all so new that it's going to take some study and thought to understand. Dr. Myers, one of the authors of the Feraheme study with Dr. Bravo, just republished an earlier article on the Feraheme scan. I'll be going to the library to find it. Also, it may be that several abstracts prepared this month by the Bravo/Dattoli/Myers team will be published at a convention in Chicago this week. I've got a hunch their work is going to be a blockbuster hit, but promising and worthy developments do not always follow a straightforward path to success in medicine. One potential obstacle will be the absence of favorable Phase III trial results (effectiveness proven in a large clinical trial, often randomized and double blinded, meaning neither the staff interacting with the patient nor the patient know who is getting the treatment or placebo - difficult or impossible for this imaging agent I think), the absence of Phase II results (dose optimized, being done or at least suggested in this trial), or even Phase I results (typically assessing safety - done in this trial). Many doctors will not even consider a medical approach if it has not been approved by the FDA. Some doctors are comfortable with "off-label" use of unapproved approaches as long as there is strong data from Phase III trials, but I suspect that many of them would balk where that data does not exist. In part, that kind of disconnect derailed the same company's attempt to get its Combidex contrast agent approved several years ago. (Also, that presentation clearly suffered from the company's over enthusiasm and misunderstanding of the evidence needed for FDA approval, perhaps amplified by some communication issues with the FDA.) Regarding my own situation, I'm fairly confident of safety at the dose in the approval for iron deficiency, but I plan to take a look at that safety data involved in the approval.

Again from my own viewpoint, going the Feraheme USPIO and radiation route would be a sharp departure from the route I had been and am still on at the moment. That latter route involved the elements you mentioned: ("(Remember about our discussions on his approaches where; after changing the drugs (bicalutamide to flutamide) and verifying its success, he likes to increase drugs’ potency before advancing to a “next phase”?)" For most of us, that strategy is designed to control the cancer and make it chronic rather than lethal. This new strategy is to go for a cure; for me it would be a completely different approach rather than a new phase.

I'm trying not to get my hopes too high. Of two friends who have had the Feraheme scan, one went on to radiation for a challenging recurrence lasting well over a decade, with current PSA results looking good, but the other learned that cancer was in an area that radiation could not hit safely. He is back to using tactics to make the cancer chronic rather than lethal. At least he knows he gave it his best shot. Perhaps what he learned may help him in the future as technology advances. (In fact, he's using his technical background to try to nudge the technology along.)

Take care,

Jim

 
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Old 11-29-2011, 03:23 PM   #6
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Re: My story, next chapter; also F18 bone scan and Feraheme USPIO scan

Jim, if it were me, I would just tell them that I plan to have the surgery -- they can't force you to have it, and they're not the ones who do it. Afterwards, you can just say that you changed your mind. But I admire your scruples if you choose not to. Alternatively, any cooperative oncologist can "officially" diagnose you with iron deficiency anemia for chronic kidney disease to get your insurance to pay for the feraheme, and then give you a 3T MRI. It galls me that this is a diagnosis/treatment your insurance ought to pay for, but you have to trick them into getting what is medically necessary.
- Allen

 
Old 12-01-2011, 04:44 AM   #7
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Re: My story, next chapter; also F18 bone scan and Feraheme USPIO scan

Jim

I am very glad for your positiveness in the project for cure. I believe you will achieve it. Your case is rare among the many I have read and followed because you acted timely with stealth precision to have the cancer into submission over 12 years. You knock it down to the “canvas” and did not give it any truce.
Your knowledge gave you the edge needed to lead the “cart”. I think that the same is happening now which lets you have that feeling of the “feet again firmly on the ground”.

Myers (my hero) case has similarities to yours, he was diagnosed at the same period with G7, followed restrictive protocols and is now “cancer free” (his own words for cure). Radiation provided him with such status and radiation is what you plan to use too (is it correct?).

Regarding the test USPIO MRI, I would recommend you to research European sites about USPIO agents in practice at several clinics. These contrasts are being used as diagnostic agents for vascular-enhanced MRI to assess peripheral arterial disease (a kind of angiography technique). Combidex has been discontinued in the Nederland’s but the test with similar contrast agents is in practice at the same institution and at other places ("off-label" or not) . Their findings may provide you with the details you are looking for. In fact, Feraheme is used safely in Europe to treat iron deficiency anemia associated with chronic kidney disease.

Here is what is written in a European medical and pharmaceutical professionals’ site;

“Feraheme is a superparamagnetic iron oxide nanoparticle coated with a low molecular weight semi-synthetic carbohydrate. It helps to isolate the bioactive iron from plasma components until the iron-carbohydrate complex enters the reticuloendothelial system macrophages of the liver, spleen and bone marrow. The iron is released from the iron-carbohydrate complex within vesicles in the macrophages. Iron then either enters the intracellular storage iron pool (e.g., ferritin) or is transferred to plasma transferrin for transport to erythroid precursor cells for incorporation into hemoglobin”.

As for the Side Effects they say this;
“Adverse events associated with the use of Feraheme may include, but are not limited to, the following:
• diarrhea
• nausea
• dizziness
• hypotension
• constipation
• peripheral edema”

In the Combidex they used an agent named Ferumoxtran with doses of 2.6 mg/Kg. (Some comment that this contrast agent is better than Feraheme). The results from the test using any of the two agents would be conclusive, as you commented, for a contrast on “presence-versus-absence”, but the size of cancerous plasma can influence the up taking by the contrast and its interpretation as much as Dr. Bravo comments. In a test on the efficacy of Ferumoxtran it was found that not all positive cases were confirmed, but the test proves its superiority in comparison with other types of MRIs. You can read details here; http://www.ncbi.nlm.nih.gov/pubmed/19401573

In my opinion, the amount of PSA may serve as judgement for the size of formed tumours not its aggressiveness. This could be an example when judging for possible false-negatives.

In your case with a prostate gland in place, it is difficult to think that cancer exists only at the lymph nodes. One should perceive that benign cells are also producing PSA. Much judgement is required to be satisfied with the results of this test. Nevertheless, they are important in the “goal” of your project.

You have helped many of us in this “boat” with your knowledge and comments. I hope my layman’s insight is of help to you.

Dr. Myers has a new video on his site discussing the Feraheme test.

The best to you.

Baptista

 
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