I am writing to my fellow Brothers with Stage 4 Prostate Cancer. We are the ones' whose primary cancer treatment failed. I would never criticize a decision other people make. I wish all of us well in our treatment plans against our terrible disease. I also know that there are many ways to skin a cat. Also that some treatments are not available in all Countries in which our membership live.
As an aside, if you were recently diagnosed with Stage 4 prostate Cancer right off the bat and you listened to the "Board Recommendations", notwithstanding the fact that zero Medical Oncologists with a specialty of Prostate Cancer exist on this Board - heck there is not even an Urologist on the U.S. Board, please consider telling the World that Annual PSA Tests after 40 years of age is a personal and necessary decision.
I recognize that my treatment path is atypical; nor is it a popular position, but it worked for me. My heart is broken when I read comments that some fear hormone injections or chemotherapy preferring a preference for Quality of Life over Life. I understand that is a decision made and I honor that decision. I remember my five close friends who took a different path and no longer are with me. Four with standard treatment (surgery, radiation, chemo) to delay and one with a ND on the Internet; all the while expressing a hatred of Big Pharm and its' conspiracy. Unfortunately, my treatment path may close for those with fears as time is definitely not on your side.
Ask yourself, "Am I ready to die?" Find the best possible Medical Oncologist who only specializes in Advanced Prostate Cancer; preferably a researcher at one of the many fine Medical Schools across the Country. I found mine who at the time was with Baylor College of Medicine and now returned to the University of Texas Health Science Center both at the Texas Medical Center in Houston.
The only assurances that I received were, "I can extend your life by ten years." And, "we found out how to kill prostate cancer cells in 1978. The only problem was how to kill the cancer without killing the patient first. I think that I am there." At 57, facing two to four or five years survival, I liked those odds. You do not have to accept a death sentence. Though it meant that I was embarking on a very aggressive Chemotherapy and Hormone Trial for six months.
I gained weight, my hair thinned and I existed on Zofran for nausea. I continued to work, but managed only 20 hours a week. I am thankful for an understanding employer. The sun and Texas heat was a new enemy which I had to contend with.
Five years after treatment, my guy told me that I still had at least ten years left as we had not tried the new "silver bullets" being developed each year. Wow, another extension of time with my Family! In February of 2010, my guy talked me into stopping Lupron. Won't the cancer come back, I asked. "No, I don't think so, but if it does, I'll give you an injection of Lupron." A year later, he says, "let's jump start your T, it's not coming back on its own." Won't it feed the cancer, I ask?" If it does, and I don't think that it will, I'll give you a Lupron injection.", he replies.
After ten years, "I cannot find any sign of cancer in your body." At thirteen years, and after a Nuclear Bone Scan and soft tissue CT Scan, "It's not there, you will not die of Prostate Cancer." I remain undetectable and continue with 4 mg of Androgen gel twice a week. My Testosterone level ranges from 400 to 500. I see my guy every four months, and review four pages of lab work.
I believe in all my heart that the skill of "my guy", attentive detail to his instructions, early aggressive treatment, Family and Friend Support, and a belief in the healing powers of our Creator are the reasons that I continue to do the things that I like to do while enjoying my time on Earth with my Family.
I am here to tell you, fear not Lupron; fear not Chemotherapy. Are you ready to die? Are you ready to kick this bastard before it ravages your body? Weakening it as the cancer cells multiply so that "the last hope of chemo" fails. Will my path work for you; I am not sure.
A final word. In reading others' posts, I see that not all chemotherapy is equal. Some Medical Oncologists only use what is standard protocol. This is what I had:
Each course of chemotherapy lasts for 8 weeks. Patients were treated in weeks 1, 3, and 5 with doxorubicin 20 mg/m2 as a 24-hour intravenous infusion on the first day of every week in combination with ketoconazole 400 mg orally 3 times a day daily for 7 days. In weeks 2, 4, and 6, treatment consisted of paclitaxel 100 mg/m2 intravenously on the first day of every week in combination with estramustine 280 mg orally 3 times a day for 7 days. 30 mg of Prednisone everyday through the three courses of chemotherapy.
Last aside.
To the Medical Oncologist who told me that doxorubicin would never work. "Right..... :)"
Wow Great results Gourd Dancer, keep kicking the bastard, I am taking a wild guess and saying the MO was Dr. C.L , I remember a past patient, fast ford, who went through his rigorous protocol and did good. I agree with everything you said, and fortunately you and I were lucky enough to make it out to the tail of the survival curve, you most likely further out than I.
Gourd Dancer when first diagnosed with Stage 4 cancer I found this site and what you have endured. There wasn't a day that went by where I didn't think of your diagnosis and where you are now. It gave me and continues to give me hope and the drive to stay ahead of this dreaded disease. It was your theory on hitting it with everything you can while your healthy enough to handle it and your result that made me realize this disease can bleed.
I also started out with a 3 to 5 year death sentence. With my initial therapy I was told it would only be a life extension. With aggressive treatment and unconventional therapy I am now being told I currently have no signs of disease. Only time will tell but for now I will be cautiously optimistic and enjoy the life I have been given. Through you I found courage to defy and overcome by knowing it is possible to beat this. I have taken some shots and slowly coming to terms knowing parts of me will never be the same. I accepted the fact nobody is going to get out of a Stage 4 diagnosis without scars. I have a beautiful life with thoughts of a future and that's okay.
Thank you Ron. I am glad that you are kicking this bastard. We are all a Statistic of One. At any given time, what really matters are your stats. Keep up the good work.
Hi GD, It's great reading your progress and cheerfulness. May I make one suggestion? We have become a statistic of what drives each of us. I feed off my brothers for that is what we are. Even those I know who have gone before have commented how much we all have helped their survivability and none have ever expressed jealousy of those who for whatever reason have a better outlook. Just one comment from my Oncologist who overheard me talking of terminal PCa. She said, David don't say that. You are incurable - I will effing tell you if you become terminal! I was delighted with the 'if' and no 'when'. David
You deserve a great deal of thanks for showing up again with your entire story to inspire and elevate the hopes of many who are battling with the Adv. PCa. I can recall, from time to time in your replies you mentioned about the success achieved in the early use of chemotherapy with the help of a great oncologist - Dr.Robert Amato. You are almost cured! though we should realistically take it as a long... long... remission. You were bold enough about 13 years ago to hit your cancer as hard as possible with the most aggressive treatment whereas only now even most of the oncologists are convinced of the advantage of using early chemo with ADT. Situation is much better now with the results of STAMPEDE and CHARTED Trials. However, in the use of chemo therapy in your specific case, I notice that Dr.Amato has followed a very strategic approach under different steps which I have not seen others using. That may be his unique expertise and the cutting edge!
Quite apart from your success story, your current post also contain very good advice to deal with the undue fears we may have on aggressive treatments which are essential to save our life. As you have beautifully put it " some are unduly concerned about the quality of life and they prefer QOL over the life itself "
Thank you for reminding that we should live first to enjoy any quality of life!
Thank you Sisira for your kind words. Keep kicking the bastard. The results of Dr. Amato's research is truly in front of the pack. I understand that he has treated over 600 since the trial using the same protocol with remarkable results. Not a 100%, but enough to make a big difference. His last research that I am aware of is the use of short term adjunctive chemotherapy after initial treatment for those who although having no signs of metastatic disease, have poor odds for initial cure. He is the most caring and compassionate Physician that I have ever met. Completely dedicated in his field. I see him in three weeks.
Shoot... with your results I'd also be dancing my gourd off... Way to go gourd-di-o.
j-o-h-n Friday 07/07/2017 10:03 AM EST
F'n AYYY! MedOnc's are what they are, a doctor of chemicals. At least that's what mine told me. When I ask specific questions about the things we converse about here, he looks at me like I have three eyes. He just doesn't know, and would rather berate my inputs to my care. Genetics? Out of the question. BIRM? No way, even though the NIH is going to study it. It becomes aggravating when you live across the river from Philly, and you can't find an Onc who specializes in PCa.
in reply to
Joe, there are several Medical Schools across the Trenton from you. Have gone to each school's faculty listing by specialty? Look for PCa Research. Read the bio on that person. See if it fits your bill and then call their office to see if they see patients. I helped a friend do this in Houston and there were six MOs doing research in his cancer. All were Professors and Researchers. All treated patients.
BTW, in Houston there is a committee named SPORE its members are researchers from each of the five or six medical schools in the Texas Medical Center. I got to my guy through a Professor of Radiation Oncology who called on my behalf and also sent my scans and medical history. Networking.
Good luck in your search,
GD
in reply to
Hey GD,
First, it's the Delaware River, Trenton is a city up there a bit, where Washington rowed with his men... and you know the rest of the story.
When I see the Geneticist's(?) at the end of the month, I will have a better view of what I will do, I think. But, in the mean time, I'm going to research for a good Onc, with PCa knowledge. To be quite honest, I'm trying to go the cheap route, by keeping things within my insurance group. The issue with that is, I'm on my wife's plan at her work, which is a large hospital group here. They are self-insured through Aetna, so I try to stay with the lower co-pay. Don't get me wrong, that there are no Uro/Onc's around here, there are. But, one a$$hole, didn't like it when I filed a complaint, and "kicked" me out of the practice. I can't go back, because I want to sue them, you see.
Joe
in reply to
Durn it knew that! I use to live in Gibbstown. My father's family was from Paulsboro...... they were Nurseymen and Florists. Caught my first fish in the Delaware across from DuPont...... I remember a sighting of the Jersey Devil in the mid '50's. Lol
in reply to
LMAO I have to add, it's still a huge business today, both flowers and the devil. My brother lives in the Pines.
Kuanyin, I am well aware of the letter and others. And, I understand the failure in proper FDA record keeping. And, as you say, he was busy saving lives.
He also thinks blind studies in some Class II and Class III Trials are cruel and unusual punishment when the toxicity of the drug is known. However, the FDA doesn't think so. Thanks
I note that not everyone did as well as you, but you weren't the only one who appeared to be doing really well. That article was published 4 years ago. Do you have any recent results on how the other guys are doing?
I'd love to know what distinguished the guys who did really well from the guys who did so-so. That kind of information seems to be really hard to figure out. It's a problem for all of the treatments. However it would be wonderful for the patients to get it - at least for the ones who would likely do well with the therapy.
Hi Alan, good to hear from you. The difference as I understand are several reasons. The two that I am most familiar with are:
First, early chemo at onset of mets. The longer the delay, the worst the results are. For example, Dr. A treated one if my college classmates who one September was told my husband Medical Oncologist to get his affairs in order as he would not see Christmas three months away. I encouraged him to send his scans. He moved down from Seattle and started the protocol within 30 days. Jerry saw three more Christmas' plus six months. His metastatic design was too far spread and beyond the safe threshold of the treatment. Fortunately, Jerry used his "bonus" to spend time with his family. The cohort was made up of varying stages of disease. I know the first 19 group, but not the rest.
Second, there were some patients during our treatment that did not follow all of protocols; instead bailing on some oral drugs that made them sick.
Alan, this is why I am a big proponent of early chemo while the body is strong and not ravished by this bastard of a disease.
I know you have a different trial that worked for you knock the disease before distant mets. that is wonderful
Love your post and agree 100%. I was a Dr Myers patient for 13 years after others said I won't make 5 years ( including John Hopkins ). Stage 4, Gleason 9 at diagnoses, 4 week doubling time. Dr Myers extended my doubling time to 1 1/2 years and got me to a point where new imaging techniques were able to identify a single very strong met. Underwent cyber knife treatment, and 2 weeks later my psa started to drop. Next labs next Monday, 6 weeks after treatment. Fingers crossed. Either way this bastard isn't going to kill me. The key is to learn as much as possible, take control of your treatments with a doc willing to work with and guide you, and absolutely make your own decision regarding quality of life. Rudy
I live in Montgomery Texas about 45 minutes from the med center in Houston. Do you think Dr. Amato will see me ? -- I have lymph node (4 of 10) in final path report and had undetectable PSA immediate post surgery My PSA at time of surgery was 8.0 Gleason 4+4 - 8. -- done in April 2016 -- I am considering starting salvage RT of the pelvic lymph nodes with ADT -- my current PSA is 0.5 and doubling every 4 months. It sounds like Dr. Amato may have a better option instead of or before RT or immediately after?
Pretty sure that he will. During the trial there was a guy from Lufkin, Dallas, Waco. He saw my best friends from Pirtland, OR who subsequently moved here. All his contact numbers are in line. Search Robert J. Amati or Memorisl Hermann Cancer Center. If you can't find, then let me know and I will grab it. I am guessing that they will nit be in the iffuce zmonday given the water.
It would be great if a list of MOs who specialize in PCa were published. Does anyone know of such an animal?
I'm age 73, stage 4 gl9 but consider myself fortunate in that I've only had two iliac lymph nodes and one femur met , both areas which I treated (or am treating) with RT and ADT. Before reading ur story I had not wanted to consider chemo and none of my uros or ROs ( I don't have a MO since the one ahole I talked to two years ago gave me five years) have recommended chemo.
I like your story, it is inspiring! I was diagnosed with Stage 4 prostate cancer right at the start, in 2014. PSA over 100, hip fractures, major bone pain and it didn’t look like I had long to live. I stared Eligard and Chemo (6 cycles of docetaxel, 3 week’s each), PSA went to undetectable and bone scan looked much better following the chemo. Still on Eligard, and PSA is still undetectable, going to do intermittent treatment soon. I take lots of herbal supplements and try to manage my diet as best I can to fight th cancer. But I think you are right, dont mess around with your life, get the best medical treatment you can, and don’t fear chemo or Eligard. They are much better than the alternative....
Hi Gourd_dancer. I am looking at this old post off the back of your recent great news post. These positive stories brighten up an otherwise bleak landscape. I'm chewing my nails waiting for the results of a PSMA scan/ rising PSA done yesterday. It sure absorbs the mind. I'm sure lot of people are happy for you - me too. All the best....
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Stage 4 Prostate Cancer Questions
Use of Tetracyline Or Doxycline in Stage 4 prostate Cancer?
Metastatic prostate to bones, bladder and liver. Stage 4 and Gleason score 10
Advanced Metastatic Prostate Cancer
Stage 4 Metastatic Prostate Cancer AND NOW also Parkinsonism and PSP
