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Old 05-24-2008, 11:04 PM   #1
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what questions to ask? also general info - 88yr old w/ spinal metastasis

I need a little help and advice. Maybe 10 years ago my now 88 year old grandfather was diagnosed with prostrate cancer. Treatment included radioactive seed implantation and Lupron. His PSAs would bounce up and he would go for his Lupron and they would drop. This cycle continued for quite some time. Over the past couple years his PSAs have been getting progressively higher, hitting a high a few months ago in the mid-200s range. He has long suffered back pain (originally not associated with any bone problems - just advanced arthritis) that has been managed with spinal blocks. Recently the spinal blocks have not worked and he was experiencing a great deal of pain that was running his life. So he was sent for an MRI and bone scan which showed metastasis of his prostrate cancer in his spine. We are all shocked by this (it has certainly put our small family on our butts) but really shouldn't be I guess. But anyhow, he has an appointment scheduled for this coming Thursday (5/29) and we all (my grandfather, grandmother, my mother, and myself) are going to go (after all, he is 88 and gets confused easier than he used to and has a harder time keeping things in order).

I am the scientific researcher in the family so I am of course doing my homework before our meeting to be very prepared. But I would love to know what all of you who have "been there, done that" would recommend I should ask. What are all the keys I should make sure get covered? I am really thinking traditional chemo is going to be out (quality of life is going to be important as he is so old, but we would like to protect longevity as much as we can) but what other treatments, medications, options should I make sure are discussed?

Thank you all for your help!

 
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Old 05-25-2008, 03:01 PM   #2
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Re: what questions to ask? also general info - 88yr old w/ spinal metastasis

Hi Kikki,

How fortunate your grandfather is to have his wife, daughter and you with him in this struggle with cancer! That must be a great comfort to him!

From what you have written, it appears your grandfather's recurrence of cancer following seed therapy was managed conventionally with just one hormonal therapy drug, used sparingly. There are probably many doctors who would use such an approach, especially with an elderly patient, but due to my challenging case I have become familiar with a different way of using hormonal therapy and what is probably a different set of supporting tactics and follow-up options.

The doctors who have developed this approach have observed some surprisingly successful responses from many of their patients. Unfortunately, there are no formal clinical trial results that prove their approach, so their larger medical communities remain largely unaware or unconvinced, though some of the tactics are now becoming fairly widely accepted. I believe your grandfather would probably benefit from at least some of these advances, with an advantage in survival and with reasonable risk and quality of life.

The advance that looks to me to be the most clear-cut and best accepted is the use of a powerful drug from the bisphosphonate class for prostate cancer patients with metastases in the bones. The drug is Zometa, and it is delivered by an infusion. It is known to not only protect and often rebuild bone mineral density, but also to help slow down, halt or even reverse bone metastasis. It is well tolerated in most patients, though the infusions, especially the first one, need to be done with care to avoid what is known as an "acute phase response," which can cause flu-like symptoms and other distress for a few days, from what I've read and heard.

There is a rare but serious complication with Zometa known as osteonecrosis of the jaw, but that appears to be associated with frequent dosing over a long time period, especially in patients with dental trouble, particularly involving invasive dental surgery. Some doctors who have used Zometa for many of their patients have not had any ONJ trouble, and they believe that may be due to scheduling doses not more frequently than every three months, instead of every month or every three weeks. Zometa is an expensive drug, but I'm confident it would be covered by insurance for someone with diagnosed bone metastases; one guy in our support group was unemployed but had Zometa covered by a patient assistance program. I don't have first hand knowledge of Zometa as I did not have bone metastases and have been on a milder bisphosphonate, either Fosamax or more lately Boniva, for the past eight years, to help maintain and rebuild bone density. I consider Zometa a wonder drug!

Any patient on an "LHRH-agonist" hormonal blockade drug like Lupron for an extended time is fairly likely to have lost some bone density because of the drug, especially if the patient is elderly. Doctors who are experts in hormonal blockade have known this since before 2000 and have found and advocated countermeasures, specifically a bisphosphonate drug coupled with supplemental calcium and vitamin D3. However, the urological and even the medical oncology community have been slow to pick up on this advance, and there's a good chance your grandfather's doctor is not aware of the risk, of the need to assess bone mineral density with a scan, with the considerations in choosing between a DEXA and a quantitative CT scan (qCT), or of the important role of bisphosphonate drugs. For a patient with spinal arthritis, a DEXA scan is useless, as I understand it as a layman, but a qCT can still accurately image the spine. Back in 2000, I had to get a referral to a medical oncologist as my excellent urologist team felt they did not have the expertise to address this risk in my case. The book "A Primer on Prostate Cancer - The Empowered Patient's Guide," addresses the basics.

Typically in advanced patients like your grandfather Lupron will be continued even though it no longer controls an increasingly large population of the cancer cells. In a patient with significant spinal metastases, there is a danger that restarting Lupron will cause an abrupt expansion of the metastases, and that can cause permanent crippling. That's because Lupron causes a brief acceleration of testosterone production for up to two weeks typically, before it leads to a great drop in testosterone. The highly effective solution is for the patient to take an "antiandrogen" drug, usually Casodex or flutamide, for at least a week or two before starting the Lupron. I'm a layman, but from what I've learned this looks like a vital precaution to me for someone like your grandfather.

In fact, many of us are using Lupron (or Zoladex, or equivalent) plus the antiandrogen plus either finasteride or Avodart in a triple hormonal blockade combination. That might help your grandfather, as he might be producing a lot of testosterone via the adrenal glands, which are not controlled by Lupron. The Primer addresses that topic also. (Intermittent triple hormonal blockade has basically been my sole therapy for eight years, so I've learned a lot about it.) There might be some additional quality of life impacts from the antiandrogen, but they would probably be mild and quite tolerable, especially with Casodex. (Liver function monitoring is needed with antiandrogens to protect against a rare and reversible side effect.) Apparently there are no additional negative side effects from adding finasteride or Casodex. It's possible the antiandrogen, perhaps with the Avodart or finasteride, would bring great relief to the back pain by helping shrink the spinal metastases a bit, as I understand it.

Another possibly effective option is to complement Lupron with a secondary hormonal blockade drug such as ketoconazole (with hydrocortisone). However, secondary blockade is normally reserved until primary use of an antiandrogen with Lupron has failed, and it's possible that your grandfather would respond well to the addition of an antiandrogen.

Another non-chemo drug to which about 50% of advanced patients respond is Lukein, a drug that boosts the immune system. Dr. Eric Klein of the University of California, San Francisco, is the leading researcher with Lukein, but other doctors are using it in their clinical practices. Dr. Charles Myers has written very favorably about it in his recent and highly readable book "Beating Prostate Cancer - Hormonal Therapy & Diet." Dr. Myers describes awesome responses
in some of his own patients in the book - in men with PSAs in the thousands who came to see him in desperate straights. Dr. Myers also describes other tactics that might be effective for someone like your grandfather.

As someone familiar with scientific research, you probably already know about the US Government's wonderful website [url]www.pubmed.gov[/url], which is sponsored by the National Library of Medicine. (I mention this site as it is appropriate to cite Government websites on this board.) You can see some of the published research behind the suggestions above by searching the site. Unfortunately, as I noted above, much of the research is still informal.

I hope you and your family find something that will give your grandfather comfort and will hold down his prostate cancer.

Take care,

Jim

Last edited by IADT3since2000; 05-25-2008 at 06:39 PM. Reason: Deleted quote of #1 since it appears immediately below. Second edit added paragraph about keto. Lukein to Lupron one place.

 
Old 05-25-2008, 05:13 PM   #3
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Re: what questions to ask? also general info - 88yr old w/ spinal metastasis

Just a note of thanks to Jim-
I think you've provided incredible information to Kikki and to the many others
whom you've taken the time to write detailed and caring explanations.
Given that it's difficult to get patients and doctors to agree on what course(s) to pursue in relatively straightforward cases, there's so much new ground when it comes to complex situations. You certainly give people not just hope, but concrete information that they can use with their doctors- and hopefully the courage to seek additional opinions if the docs they are seeing are not willing to learn about and then consider the latest approaches.

 
Old 05-25-2008, 10:34 PM   #4
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Re: what questions to ask? also general info - 88yr old w/ spinal metastasis

I am going to echo daff and say, THANK YOU JIM! Your advice is amazing. You certainly are a wealth of knowledge, unfortunately i know its knowledge you would rather have not had the need for. But you are doing a great service by offering up all you have learned.

It's late and I'm tired, so this won't be the formal response I should post, but I will get around to it, likely the end of the week (I'm leaving town in the AM to head home for the week). But I have taken extensive notes on your information and have and will spend time researching all that you mentioned. And you are right - I am quite familiar with pubmed - its a great resource. I haven't had time to really spend on there since we found out this latest news, but I am going to make plenty of time for it the next couple days!

Again, thank you so much for all the help!

 
Old 05-28-2008, 12:00 PM   #5
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Re: what questions to ask? also general info - 88yr old w/ spinal metastasis

Hi Kikki:
I'd add one more alternative course of treatment to the excellant and comprehensive list furnished by Jim. Jim completely covered the universe of hormonal blocker and bone density support drugs in common and not so common use for advanced prostate cancer with bone mets.
My own father-in-law followed an almost identical course as your grandfather at about the same ages. Radioactive seed implants at age 76, recurrance with bone mets 10-11 years later and PSA's in the hundreds. Not being very knowledgeable about palliative treatment options at the time(over ten years ago) we weren't aware of the radiopharmaceutical option for bone metastases.
Dr. Scardino the famous prostate surgeon who is now chief of surgery at Sloan Kettering Cancer Center states in his book published in 2005 "Strontium 89 a radioisotope may be able to prevent or curtail the growth of bone metastases".It is a bone seeking radiopharmaceutical that targets the bone tumors.
This is certainly one more question I would put to his Dr's as a means of easing his suffering and prolonging his functional life.
We wish we knew about this during my father-in-law's final months.
Wishing your family the very best,Bob

Last edited by shs50; 05-28-2008 at 12:09 PM.

 
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