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Cancer: Prostate Message Board


Cancer: Prostate Board Index


Re: Mr.
May 24, 2011
[COLOR="DarkGreen"]Hi Allon,

I want to add my welcome to the board, but you probably are finding very little in life that is encouraging at the moment. Let me make a prediction: as bad as things look at this moment, it won't be long before you will begin to see that your world is not ending. That said, you have a challenging course ahead of you.

Tom and JohnT have already provided some key recommendations. I'll add some thoughts in green.[/COLOR]

[QUOTE=Allon;4762178]Real rough report. Gleason 9 and spread to bones in my hip and lymph nodes. Said had a rare form with the abrev. NE or ME but was to lost at that time to hear what he was saying.[/QUOTE]

[COLOR="darkgreen"]I know of some rare forms like endometrial and small cell prostate cancer, but the abbreviations you gave are not ringing a bell for me. I suggest you call the doctor's office and ask the staff what he meant. Some rare forms of prostate cancer do not respond well to hormonal therapy, which otherwise will probably be very important for you, so it's important to find out what he meant.[/COLOR]

[QUOTE]He said surgery not option[/QUOTE]

[COLOR="darkgreen"]The doctor's comment is right in view of your case characteristics, especially with spread of the cancer beyond the range of surgery.[/COLOR]

[QUOTE]would need radiation and chemo. Understood him to say not curable only treatable.[/QUOTE]

[COLOR="darkgreen"]Like almost all of us on the board, I am a survivor and have had no enrolled medical education; please bear that in mind. However, I too have faced a challenging case for 11 years now, and that has helped me learn a lot about the disease.

I'm saying this at this point because I don't follow the doctor's logic in recommending radiation when he already knows your cancer has spread to the bones and lymph nodes. Radiation will not help much, as I understand it, if the cancer is beyond the reach of the cancer killing radiation. The value of radiation in your circumstances is a key question you should ask in your second opinion appointment.

As for chemo, maybe yes at this point. However, unless your form of prostate cancer is one of the very rare forms that does not respond well to hormonal blockade therapy, modern hormonal blockade therapy seems to me to be the best choice, possibly combined with chemotherapy, a combination that has been under investigation for the past few years.

I'm convinced that a very aggressive case is best treated with triple hormonal blockade using an LHRH-agonist (such as Lupron, Zoladex, Viadur, Trelstar) or the new LHRH antagonist, plus an antiandrogen (the drug of choice these days is Casodex, or its generic equivalent (much less expensive) bicalutamide, plus a drug in the class known as 5-alpha reductase inhibitors, either Avodart or finasteride.

It is also very common practice for a patient on hormonal blockade to be taking a bone density drug. That's because the blockade virtually eliminates testosterone, and testosterone is needed by most patients for healthy bone density unless the patient is helped with bone density medication. For a long time these miracle drugs were in the class known as bisphosphonates, including, as examples, such drugs as Fosamax (now generic alendronate), Actonel, pamidronate, and Zometa. Recently a different drug class - monoclonal antibodies, aka mab, has been added for bone density, including the drug denosumab. Usually the drug of choice for a patient with existing bone mets is the very powerful drug Zometa. There are some concerns with fairly rare side effects, but this drug can slow, stabilize or even reverse bone mets for some patients, as well as protecting bone density.

Dr. Myers discusses nutrition and lifestyle tactics to help our cause extensively in the book that Tom mentioned. (Thanks Tom for finding that quotation! :)) I'm convinced that these tactics are very important for those of us with challenging cases. However, Dr. Myers has changed his view on curcumin, which was on his list of supplements to avoid in the book. Based on later evidence, he now strongly recommends curcumin in an absorbable form.[/COLOR]

[QUOTE]Would not give me an answer about life exp.[/QUOTE]

[COLOR="darkgreen"]I know its frustrating not to get this information, but your doctor did the right thing as life expectancy for those of us with challenging cases is so hard to predict these days, based on current advanced technology, and even a well-based prediction could easily be overtaken by advances in the near term. That's all a good thing! It reflects the enormous progress being made in prostate cancer technology.

This is getting long, so I'll just briefly state that research has found that 95% of patients with high-risk cases are alive at the [I]ten[/I] year point! :D :angel: That's really an awesome figure, and it is bound to improve even further. Survival for prostate cancer patients is head and shoulders above survival for any other major cancer (not counting non-melanoma skin cancer). Dr. Myers book discusses how well some patients have done with extremely challenging cases, as Tom mentioned.[/COLOR]

[QUOTE]Sending me to cancer center to meet with radiologist and oncologist. Any input about the NE or ME. Said very rare for a 49 year old. Going to Moffitt in Tampa next week for second opinion. Any Advise or some one been through this would be helpful.
Thanks[/QUOTE]

[COLOR="darkgreen"]Moffitt is probably a good institution, certainly having a good reputation. However, your best shot is probably going to be with one of the few medical oncologists who have large practices dedicated to prostate cancer patients. As John noted, the PAP test is important for you. So also are other tests often particularly useful for patients with high Gleason cancers: CEA (Carinoembryonic Antigen), NSE (Neurospecific Enolase, as I recall it), and CGA (Chromogranin A). Some other tests mentioned in the Primer, and new scans such as the Feraheme scan, may also be valuable.

Take care and keep your spirits up,

Jim :wave:[/COLOR]
Re: Mr.
May 30, 2011
[QUOTE=Allon;4762178]Real rough report. Gleason 9 and spread to bones in my hip and lymph nodes. Said had a rare form with the abrev. NE or ME but was to lost at that time to hear what he was saying. He said surgery not option would need radiation and chemo. Understood him to say not curable only treatable. Would not give me an answer about life exp. Sending me to cancer center to meet with radiologist and oncologist. Any input about the NE or ME. Said very rare for a 49 year old. Going to Moffitt in Tampa next week for second opinion. Any Advise or some one been through this would be helpful.
Thanks[/QUOTE]

Allon

NE stands for Neuro-endocrine carcinoma (as you mention in the other thread of yours. It is a cancer (not the traditional prostatic adenocarcinoma) which is rare in prostate cancer cases. Some are aggressive but the so called “Low-Grade NE can coexist indolent a-pair with adenocarcinomas. You may type this sentence in a net search engine to find detailed information of similar cases to your diagnosis. Type; “[I]Archives for Neuroendocrine Carcinoma (Carcinoid Tumor) of the Prostate[/I]”.

I wish you find a good doctor and treatment for your difficult case.
Will be thinking of you.

Baptista :(





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