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Old 07-27-2012, 02:02 PM   #1
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The fuse is now lit - working hard on choosing a radiation therapy

I have not posted for weeks as I have been focused on finding a curative therapy for myself. As my case and current staging information are unusual, I am putting in a lot of research. Two weeks ago this became more urgent as I stopped taking the low dose of thalidomide (Thalomid) that was probably the main drug keeping the cancer in check. Here's what happened and where I am.

In brief for anyone not familiar with my case, I was diagnosed in 1999 following my first ever PSA of 113.6, GS 4+3=7 (per expert J. Epstein), all cores positive, rock hard prostate, stage 3, but no positive scans including ProstaScint. All doctors considered me incurable at that time, though I was offered radiation, with the understanding that odds of success were quite low. (I was first rejected for surgery - didn't understand much about the disease at the time and made a poor choice for my circumstances.)

Instead of radiation, finding that my PSA was plunging in response to androgen deprivation therapy (ADT - just Lupron at that time), I decided to rely on ADT and try for triple ADT, about which I was then learning. I have been on intermittent triple androgen deprivation therapy plus supportive program for over twelve years as my sole therapy, and I'm now in the 28th month of my third vacation period from the heavier duty drugs (Lupron and bicalutamide for me).

For the third time I have used an unusual tactic to extend my off-therapy time: thalidomide, in a low-dose of 50 mg daily, with vitamin B6 and a baby aspirin to help ward off potential side effects. Thalidomide has worked very well this time. I started taking it on July 7, 2011, so I have been on it for over a year. With the aid of 2 X 200 mg of Celebrex for much of that time, as well as continuing Avodart, my PSA has been fairly stable. A few weeks ago it was at 11.20, a decline from 12.34 a couple of weeks earlier, and fairly close to the level of about 9.5 where it has been for most of the months since last December - remarkably level!

However, perhaps a month ago I began sensing an odd sensation in my finger tips. The closest I can come to a description is that the tips became more sensitive, sort of like they would have been if they had been sanded down slightly with very fine sand paper. (I remember seeing safe crackers do that in some of the old movies.) I have been on the watch for signs of peripheral neuropathy, a potentially serious side effect when thalidomide injures the nervous system. Typical signs are a tingling or numbness in the feet, more commonly, or sometimes the hands. That was not what I felt, but the doctor and I agreed that I had very early peripheral neuropathy. (I also feel an odd sensation when I raise my arms high - sort of like a mild version of what you feel when you "hit the funny bone". These feelings are mild and tolerable to the point of scarcely being noticeable, but I'll be glad when I have fully recovered.) If not for the neuropathy, I would have continued thalidomide. I hope to post a new thread about my experience with thalidomide; it's definitely not a good tactic for many of us, but some of us might find it worthwhile.

The neuropathy is normally reversible within a fairly short time when caught early, as mine was. For some patients - not me, it is far more important to continue the drug to control the cancer despite the risk or actuality of permanent injury from neuropathy. I am grateful for this added year of "vacation" that thalidomide has afforded; more than anything, it has given me more time!

As I have other options to deal with the cancer, my oncologist and I decided to stop the thalidomide, and my final dose was on July 10. I'm due for another PSA test in a week on August 7, and I'm hoping the rise will not be too rapid. I'm still taking Celebrex and Avodart, and I'm continuing nutritional and other lifestyle tactics, so I do not feel as if I am completely undefended against the cancer. My strategy is to start radiation, or perhaps preliminary androgen deprivation therapy again, before the cancer builds up momentum.

I have explained in other threads in the past year how I now have a shot at a cure, thanks to both improvement in my case and improvement in staging and radiation technology. Perhaps the key developments are the advanced bone and MRI scans that are far superior to their earlier versions. I am in awe of the wonderful advances being made in prostate cancer technology.

I have been using a fairly new tool a lot in order to figure out what to do to try for a cure: the now officially published results of the Prostate Cancer Results Study Group. I've been aware of the Group's work for a long time, posting a thread about it back on 5/22/2010 with scattered mentions since then. I'm going to start a fresh thread about this now formally published tool and some of the ins and outs of putting it to use for therapy decision making.

Take care all,

Jim

 
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Old 07-28-2012, 05:22 AM   #2
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Re: The fuse is now lit - working hard on choosing a radiation therapy

Hi Jim,

It is so comforting to know that someone with a somewhat similar initial prognosis as mine continues to do so well after over a decade. The fact that you have avoided radical treatment so far is pretty impressive. Your patience has done you so well. Now that there are new tactics available for dealing with prostate cancer and more will no doubt be available in the future it is easier to gain confidence in long term survival with this disease.

I have just completed Brachytherapy and IMRT which I explain on a recent post but in the back of my mind I have always wondered if I should have more followed a path such as yours and continued with solely ADT for a while to try to knock the cancer back more before proceeding with more radical treatment. I have to admit I got a bit scared.

Time will tell if my treatment was curative. I did have radiation to some lymph nodes common for progression. Maybe that helped. I have been wondering if I got adequate dosing as my IMRT which addressed the seminal vesicles added only 45 gr. My initial Brachytherapy supplied 105 gr. and my radiologist claims this helped boost the IMRT. ??

I want to thank you again with much gratitude for the suggestions you've provided me in earlier posts. It was key to much of my attitude and structure of dealing with my prostate cancer.

I have been wondering when reoccurance surfaces after radiation treatment how easy is it to pinpoint further cancer growth? I know that fereheme imagine reveals small amounts of Lymph involvement but how do you image small amounts of cancer remaining in the prostate bed, seminal vesicles or small bone metastasis? I am blurry on this and wondering if there is an absolute way to reveal where residual cancer exists in a body after treatment so you can pinpoint salvage efforts.

I hope all is well and congratulations in your progress!

Michael

 
Old 07-28-2012, 07:10 PM   #3
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Re: The fuse is now lit - working hard on choosing a radiation therapy

Hi Jim,
I want you to know that I am always holding you up as a shining light as to how to deal with advanced PC. Your experiences are benefitting many.

I'm sorry that the thalidomide was starting to create neuropathy for you. I've just been looking into angiogenesis inhibitors for another friend of mine on hormone therapy. Revlimid (Lenalidomide), a newer but similar drug, may have fewer sides. It's hard to know until you try it, because everyone's different. The hot new one in this category, Tasquinomod, is in clinical trials and will probably get fast-tracked for FDA approval. A previous one, Avastin, did not prolong survival for PC and was disapproved by the FDA for breast cancer. Both lenalidomide and tasquinomod looked very good in ASCO poster sessions this year.

There are a number of Rx meds already available that may work synergistically with hormone therapy. None are FDA-approved for PC, but they all may be prescribed now off-label. You may have already looked into many of them. They fall into actively investigated anti-cancer categories: somatostatin analogues, Selective Estrogen Receptor Modulators (SERMs), Tyrosine Kinase Inhibitors (TKIs), mTOR Inhibitors, Histone Deacetylase (HDAC) Inhibitors, and Metformin.

- Allen

 
Old 08-01-2012, 05:40 AM   #4
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Re: The fuse is now lit - working hard on choosing a radiation therapy

Yes I agree that Prostate Cancer can be scary when first diagnosed.. I went through this last year. But was lucky that my local hospital had just purchased the "Varian True Beam" considered the world’s most sophisticated cancer-treating technology. There were only about a dozen of these machines nation-wide being used by the nations leading cancer hospitals. They can track the movement of tumors using respiratory gating and the implantation of gold fiducial markers. This is done using CT technology built into the radiation equipment, as well as four-dimensional PET/CT treatment.
Thanks to careful planning it allowed them to deliver a precise beam of radiation directly to the cancer with little or no damage to the surrounding healthy tissue. Thanks to the new Varian TrueBeam STx, they delivered an extremely high dose of radiation with sub-millimeter accuracy, reducing treatment times and side effects in 10 to 15 minute sessions. After three months of daily sessions (except for Sat & Sunday) my prostate cancer was completely eradicated..

 
Old 08-04-2012, 12:22 PM   #5
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Re: The fuse is now lit - working hard on choosing a radiation therapy

Hi Michael,

Thanks for your response #2 of 7/28, which I am quoting in part below. It's impossible for most of us to enjoy absolute certainty that our choices for therapy are best. I am fully convinced that not even the experts know for certain. However, there are a number of good choices out there, and our job, as I see it, is to do our best and then relax. You wrote in part:

Quote:
Originally Posted by yarbo3 View Post
Hi Jim,

... I did have radiation to some lymph nodes common for progression. Maybe that helped.
Whether to get mini- or whole pelvis radiation will likely be a key issue for me. While my case technically would be classed high-risk, which would call for whole pelvis radiation I believe, the Feraheme USPIO scan indicated no spread to any lymph nodes. I'm thinking the lymph node radiation you got was good insurance.

Quote:
I have been wondering if I got adequate dosing as my IMRT which addressed the seminal vesicles added only 45 gr. My initial Brachytherapy supplied 105 gr. and my radiologist claims this helped boost the IMRT. ??
It seems typical that areas outside the prostate get much lower doses. I'm thinking and hoping there is solid research behind that practice. Maybe one of our long-time radiation hands can clarify that for us.

Quote:
I want to thank you again with much gratitude for the suggestions you've provided me in earlier posts. It was key to much of my attitude and structure of dealing with my prostate cancer.
You're most welcome. Glad to have helped.

Quote:
I have been wondering when reoccurance surfaces after radiation treatment how easy is it to pinpoint further cancer growth?
Recurrence can vary a lot in timeframe, but typically will be within a few years, as I understand it. My impression is that for modern, well-done prostate cancer radiation there is not much recurrence after five or six years. Dr. Dattoli, a seeds/IMRT expert in Florida who has published his results in peer-reviewed and respected journals, has stated that for his approach there is only a 1% rate of additional recurrence beyond six years. One tricky issue is the PSA "bounce" or "bump" that occurs fairly often for both seeds and external beam. A true bounce is harmless. A number of research papers have been published on the importance of the nadir achieved after radiation. The bounce has also come in for a lot of attention.


Quote:
I know that fereheme imagine reveals small amounts of Lymph involvement but how do you image small amounts of cancer remaining in the prostate bed, seminal vesicles or small bone metastasis?
I'm not sure about the prostate bed and vesicles, though I suspect an endo-rectal MRI would be useful. The Na (sodium) 18F PET/CT bone scan is much more sensitive, specific and generally reliable than the older conventional scan (based on the technetium isotope).

Take care,

Jim

 
Old 08-04-2012, 12:39 PM   #6
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Re: The fuse is now lit - working hard on choosing a radiation therapy

Hi Allen,

Thanks for your encouragement in response #3 of 7/28. I'm replying to parts of your response below.


Quote:
Originally Posted by Tall Allen View Post
I'm sorry that the thalidomide was starting to create neuropathy for you. I've just been looking into angiogenesis inhibitors for another friend of mine on hormone therapy. Revlimid (Lenalidomide), a newer but similar drug, may have fewer sides. It's hard to know until you try it, because everyone's different.
I definitely was interested in Revlimid instead of thalidomide, but it cost far more (several thousand dollars more per month ). My oncologist was fairly sure my insurer would cover thalidomide for my off-label use, but he was doubtful that it would cover Revlimid. Frankly, as I had done acceptably well on thalidomide two times previously and as my intended use was to extend my off-therapy vacation rather than to be the main defense against the cancer, I was fully willing to use thalidomide instead of Revlimid. If your friend has a choice, my impression is that Revlimid is a superior drug. Thanks for mentioning the research on lenalidomide and tasquinomod.

The mild neuropathy symptoms I experienced have gotten no worse and may have eased a bit. I am enjoying freedom from thalidomide, though I certainly sleep less soundly. Paradoxically, I need substantially less sleep, no longer feel a strong urge to nap, and feel alert throughout the day.

I am aware of the other drugs you mention, but at the moment I am happy enough to let my PSA rise a bit as I assume I will soon be starting radiation therapy or androgen deprivation leading up to such therapy. That could change. Stay tuned.

Take care,

Jim

 
Old 08-04-2012, 01:08 PM   #7
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Re: The fuse is now lit - working hard on choosing a radiation therapy

Hi Tom,

Welcome to the Board! Also, thanks for your response #4 of 8/1.

I am not familiar with the "Varian True Beam" technology, but it appears you had the benefit of the latest equipment.

My impression from observing developments in radiation over the years is that there are a number of radiation imaging/positioning/planning/delivery technologies capable of producing outstanding results if used by expert radiation doctors and staff.

A well regarded facility that is very convenient for me has such modern equipment, but I read that the team typically plans, based on research based standard of care recommendations, for margins around the target of about 6-7 mm (about a quarter inch) except for a smaller 4 mm margin for the rectum. For a cancer that is clearly well confined to the prostate capsule, I'm wondering if such margins are needed instead of smaller margins. My local facility has TOMO therapy equipment that incorporates a built in CT scan, as well as equipment similar to TOMO, but I do not recall that they incorporate a PET/CT feature. Do you know the kind of PET scan used? Typically, less aggressive prostate cancer does not metabolize glucose extensively, and glucose metabolism is key for typical PET scans. On the other hand, I recently had a sodium 18F PET/CT scan for checking bones that was not based on glucose metabolism. If the PET/CT hooked to your equipment was as loud as the one I experienced, I hope you had ear plugs!

However, some of us have cancers that may have escaped the capsule but remain in the local area, and for such cancers it would arguably be of little advantage to use equipment that is extremely precise. I am in the process of learning more about this.

You wrote in part:


Quote:
Originally Posted by Tom629 View Post
... Thanks to the new Varian TrueBeam STx, they delivered an extremely high dose of radiation with sub-millimeter accuracy, reducing treatment times and side effects in 10 to 15 minute sessions. After three months of daily sessions (except for Sat & Sunday) my prostate cancer was completely eradicated..
Do you know the dose they delivered to the key target area? Research I'm studying indicates that doses of 78 - 81 Gy for external beam equipment are associated with results superior to results for significantly lower doses. I'm thinking that with today's ultra precise technology, such as that you mentioned, even higher doses could be safely delivered. (Doses for seeds are much higher, but that's a different technology, with far slower release for low-dose seeds, and another story.)

Take care,

Jim

 
Old 08-05-2012, 08:36 AM   #8
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Re: The fuse is now lit - working hard on choosing a radiation therapy

"Do you know the dose they delivered to the key target area? Research I'm studying indicates that doses of 78 - 81 Gy for external beam equipment are associated with results superior to results for significantly lower doses. I'm thinking that with today's ultra precise technology, such as that you mentioned, even higher doses could be safely delivered. (Doses for seeds are much higher, but that's a different technology, with far slower release for low-dose seeds, and another story.)"

Hi Jim,
Sorry I don't remember the dose they delivered to the target area. I'm not as technically adapt as yourself to have followed it all, but I do remember my doctor telling me that with the Varian TrueBeam they would much higher doses than the old methods at a much higher accuracy and much faster rate.

To begin, they implanted gold seeds as tracking seeds. After scanning they did say the cancer had attached itself to the outside wall giving it a possibility to spread, but with the accuracy of their equipment they could focus on that area as well as the cancer to stop it in it's tracks. Apparently this machine will automatically readjust itself to focus on the cancer even if there is movement of your body or insides! Amazing technology..

Prior to seeing this doctor I had seen a different doctor who wanted to do High Intensity Radiation followed by Brachytherapy using equipment at a different hospital. I later learned from a nurse that worked there that the results showed a high degree of side effects with many of the patients.. She suggested I see a doctor at a different hospital and I'm glad I did since the place I choose had a higher success rate with no side effects.

Not sure what your location is, but I would look to see what kind of equipment your hospitals may use and inquire about the Varian TrueBeam..

Wishing you lots of Luck in your research and may years of Health!

Tom

Last edited by Administrator; 08-05-2012 at 08:40 AM.

 
Old 08-08-2012, 07:21 PM   #9
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Wink Re: The fuse is now lit - working hard on choosing a radiation therapy

Thanks Jim for your feedback on my radiation dosage. I much appreciate it. Time will tell. I am confident in the care I was given and am now in the hoping for the best stage.

My radiologist want me to be on hormone therapy for another two years following the IMRT. I was just reading in Dr. Meyers Prostate Forum that he does not like to have patients on hormone therapy for that long as it ups the possibility of not returning to normal testosterone production. I was wondering if that is more of a risk in older guys than me at 51.

It is now a month after IMRT I have little discernible side effects. I do have to urinate a bit often but other than that, nothing. I had a rectal balloon inserted everyday during treatment which, though a bit uncomfortable, is supposed to protect the rectal wall and help immobilize the prostate during treatment. I hope my lack of side effects continue. I do have gold markers as well and now have three small tattoos (dots) around my waist that will remain with me forever.

The machine I was treated with was a Varian. I don't know if it was a True Beam but it was perhaps near ten years old.

I wish you well in your final treatment decision and I am sure you will make the correct decision for yourself!

Best regards,

Michael

 
Old 08-09-2012, 04:03 AM   #10
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Re: The fuse is now lit - working hard on choosing a radiation therapy

Hi Michael,

You're welcome, and I'll add a few thoughts. You wrote in part:


Quote:
Originally Posted by yarbo3 View Post
... My radiologist want me to be on hormone therapy for another two years following the IMRT. I was just reading in Dr. Meyers Prostate Forum that he does not like to have patients on hormone therapy for that long as it ups the possibility of not returning to normal testosterone production. I was wondering if that is more of a risk in older guys than me at 51.
Yes, I've learned that the risk is related to age. In the past I've read in a number of places that age 70 is the point where the risk becomes substantially greater when hormone therapy (also known as androgen deprivation therapy - ADT) is continued for around two years or more. Neither the two year point nor the age is a going to apply to everyone, apparently. Some younger men will not return to normal even with shorter ADT than two years, and some men older than 70 will return to normal even with ADT longer than two years. Starting at age 56, my first period on ADT was 34 months long and I recovered very well. My next round was 19 months; it was shorter because it was no longer thought essential to keep your PSA below 0.05 for a year. I again recovered well, and my testosterone also recovered well after the third period on ADT.

Dr. Myers had a rough time on ADT he was on for about eighteen months, and he acknowledges that that experience influences his advice against continuing ADT for long periods. There is also some research (the Strum, Scholz, Lam and others team) suggesting that the benefits peak at about seventeen months for most of us, though that is experience from just one practice.

I believe the choice of two years rather than a somewhat shorter period is based on at least one (but not many) research study demonstrating substantially better results for higher risk men given two years of ADT versus just six months. The problem is that we really do not know the effects of ADT at somewhat shorter periods, though there are indications that shorter periods will be adequate.


Quote:
It is now a month after IMRT I have little discernible side effects. I do have to urinate a bit often but other than that, nothing. I had a rectal balloon inserted everyday during treatment which, though a bit uncomfortable, is supposed to protect the rectal wall and help immobilize the prostate during treatment. I hope my lack of side effects continue. I do have gold markers as well and now have three small tattoos (dots) around my waist that will remain with me forever.
Your experience is encouraging to me. Some of the equipment that is ten years old or even older is considered excellent. A lot depends on the team that planned and delivered the radiation. My impression is that that matters more than the equipment.

Take care,

Jim

 
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