Help Again Please

Hello,

I wrote a post about my husband several months ago and all of you who kindly answered were so helpful and full of so much support. You all have a great deal of knowledge and have been through very much yourselves. I am in awe. So, here I am again. I will briefly recount my husband's story so far.

A year ago, October 2010, he had a TURP for what he was absolutely sure was BPH. His psa at the time was 26. I have to say here that my husband is a physician (albeit his specialty is gastroenterology, but he practiced general medicine for many years and still volunteers time at the local Free Clinic) and so a congenital medical know-it-all (though his knowledge of prostate cancer is years old. As it turned out, he had pca that had spread to his bladder and was a Gleason 10(!). The urologist who performed the TURP said he "scraped out" the bladder, but he did not order a CT scan, or a bone scan until early December. While the CT scan was clean, the bone scan showed, in the radiologist's words, several "probable" bone metastases. They were so small at the time that the call was difficult to make. The urologist did not inform us of the results of the scans until later in the month and only started my husband on Firmagon in late December.
His psa dropped to 4, remained there until April when it went up to 8 and the bone scan lit up "like a Christmas tree." At this point, the urologist told us to call hospice.

My husband was asymptomatic (the urologist said that would not last for long) and had an appointment with an oncologist for May that had been set up in January. As an afterthought, the urologist added Casodex at 50mg. My husband was already on Avodart. Because I had read Dr. Myers' book, I persuaded my husband to take 150mg of Casodex. The result is that his psa fell back to 4.

When we saw the oncologist in May, he would not prescribe more than 50mg Casodex and said my husband could take that if he wished and stay on the Avodart if he wished, but that it really did not matter. He gave him a three-month injection of Lupron and told him to come back in August. He also said that if his psa had gone up at this point and if there was progression on the bone scan, then the worst case scenario would be 18-24 months. He also put my husband on a three-month infusion of Zometa.

When my husband returned to the oncologist in August, the oncologist had a look of surprise on his face. Not only was my husband still asymptomatic, but he was still working a very full schedule. My husband received another infusion of Zometa. But this time the psa had gone up to 10. The oncologist never called about the results of the bone scan, but my husband was able to get the report and, according to him, it is either the same as it was in April, or marginally better. Yesterday, though, while he was doing his procedures, he said that he suffered back pain. Although he has dealt with back pain for years, he said this felt different and he tried to call the oncologist, who was not in the office. Today, my husband feels a lot better and says that the back pain has diminished and only bothers him a bit when he moves in certain directions. He even managed to go swimming at 5:00 a.m. before work and is doing another full day of work.

I apologize for the length of this post so far, but here is my problem-- My husband is obviously in denial. He is about to see the urologist who gave him only six months to live back in April, and the oncologist, while having a nice manner, also does not seem to be aware of recent developments in the treatment of pca, such as second-line hormone therapy. He totally dismissed Dr. Myers and Dr. Liebowitz. As of now, my husband refuses to get a second opinion and is not scheduled to see the oncologist again until November. But I am thinking that something has to be done NOW. My husband is Dutch and his favorite sister was just here from The Netherlands, trying to persuade him to get a second opinion. No luck, but the seed was planted.

So, finally to get to the question I want to ask: We are near the Cleveland Clinic here in Lorain County, Ohio. Is there any doctor there that anyone could recommend, someone from whom my husband could get both a second opinion and more cutting-edge treatment? I continue to try to be hopeful, but it is so difficult and I know we will get another "get your affairs in order" talk from the urologist when we see him on Friday.

For now, I can only give anyone who responds to this post my grateful thanks and my own prayers for their success in this battle with the beast.

Iolanthe

Iolanthe,

I'm very sorry for your situation. This must be extraordinarily difficult for you.

It might be worth a trip to downtown Cleveland to see Dr. Stephenson, who is well published and highly regarded:

http://preview.tinyurl.com/5sbyeq2


Best wishes to you both, and please let us know how it goes.

Jonathan

Tell your stubborn husband to call me. my next door neighbor just lost his eight year battle with PCa. If he would like pictures taken every week showing his downward slide into the abyss until he finally gave up the fight and lost the fight and hopefully he is in heaven, pain free and cancer free. Tell your husband that prostate cancer is the most painful way to die, and it is. Explain that his bones will feel like they want to explode, his rib cage will be eaten up and wiped out. Then it goes into his liver, kidneys and brain and by then you want to die, but death doesn't come fast enough.
i
Tell him to get off his ass and go find a new set of doctors that will take him and and prioritize his health care plan, t keep it in remission. It has been horrific for me to watch my dear neighbor over the last eight years , but most importantly, watching him the last three years. It has scared me to death and I will research, read, meet with other doctors to find the most aggressive treatment plan. In fact I am headed down to Las Vegas to meet with a Medical Oncologist to get him to read my past cancer actions, surgery, provenge treatments, and to get his take on what I should be doing and be preparing to do. My hope is that Dr, Vogelzang will have great ideas for me and that they will prolonged my quality of life for a few more years.

If you want my phone number, email me and I will send it to you. And if he doesn't want to call me, and you want me to call him, I will gladly do so, if you think it may provide the incentive to get back of the road and meeting with different doctors. As we know, they are not all created equal. Good luck in your quest.