The following was sent to me as a comment to a prior post. Instead, I think the comment warrants being put up as its own separate post. It is written by a urologist who has requested that I only use his initials instead of his full name.
I would like to thank you for your website. Ironically I am a urologist and was diagnosed with Gleason 9 cancer with some signet ring cell formation with bone mets to the pelvis and ribs lat June. I am 58. Your site helps me keep up with some of the latest and greatest. My father actually calls me with items he reads in the Wall Street Journal
My PSA had been stable at 1.8 for years and jumped to 5.8. I went on ADT and after 3 months later I underwent 4 cycles of Taxetere and Carboplatin up front rather than waiting for what they now call (horribly named) the inevitable castrate resistant tumor.
I was going to have pelvic radiation, but we found some rib mets that were initially missed and decided against it. I work full time, other some decrease of ER coverage. I force myself to workout with a personal trainer 3 times per week. Somehow I live through the fatigue. I am the only man at the health club buying soy protein trying to lower his testosterone:-) I do miss my hormones and so does my younger wife. i have a 3 year old child and a 28 year old.
I take my fish oil, green tea extract, POMx and lipitor(off label, soy protein shake every morning. I avoid animal fats and eat mostly fish. I will probably start metformin off label after my next 3 month imaging.
I have no regrets regarding getting chemo up front as I have seen enough patients with high grade tumors suddenly have widespread mets despite very low PSAs. Before I was diagnosed I sat at a meeting next to Phil Kantoff, who is now one of my oncologist along with his colleague May-Ellen Taplin, from Dana Farber and asked him why they don’t treat patients with the high grade tumors which are destined to fail up front. He gave me the standards answer at the time was that it was not done.
Despite the bullshit regarding the PSA and trend toward active surveillance I hope that the experimental treatment will be offered up front prior to becoming hormone resistant in high risk patients. I lost weight with a diet and exercise prior to my chemo and was able to tolerate the full doses. I don’t think I could have being sicker as most of the patients are.
Keep up the good work. I wish you well!
MN, M.D.
I quote MN:
I have seen enough patients with high grade tumors suddenly have widespread mets despite very low PSAs…
Finally, someone has brought up this issue I have been asking about for a year now. That is…does keeping PSA low via ADT early on after radical prostate surgery give us extended well being? I sincerely question the practise. Dr. MN appears to have observed metastasis in spite of patients keeping their PSA low by these treatments. So, are we over medicating our selves to no real benefit?
TP
Joel, Can you clarify metformin.
I wanted to add metformin before beginning taxotere. My oncologist refused saying since I was not diabetic, I risked consequences of low blood sugar. Another oncologist said, that’s not how metformin works. The urologist above did not indicate whether he had high blood sugar. Do we know any more about its success with HRPC?
I will send an email to the urologist and ask for him to comment.
Joel
Please withhold my name.
I will comment on the above as best I can as I am not an endocrinologist or internist. From what I have read and been told by my oncologist Glucophage or metformin does not actually lower the blood sugar on its own unless you are debilitated or have a low intake of food or overexercise. I do not have diabetes. I would however would trade it for my prostate cancer. Antidotately most of the patient’s that I have who have done poorly with their prostate cancer are not diabetic. The question could be asked is this secondary to the benefits of the medication or dying young due to complications of diabetes or wishful thinking.
I will be seeing my oncologist at the end of April following imaging with a bone scan and CT scans of the chest, abdomen and pelvis. I will discuss with her the use of metformin. It should be noted that it must be discontinued prior to the use of intravenous contrast and renal function rechecked.
In terms of the question regarding ADT after failure of a radical prostatectomy that has been argued among urologists and oncologists for years. There is a tendency now to attempt to limit the use of ADT due to an increased risk of metabolic syndrome and early death from heart disease particularly in those patients with pre-existing illness. This is still being debated. There is still the discussion of intermittent ADT. I do believe with high grade tumors you need to be aggressive and the PSA may be less reliable. My tumor is a Gleason 9,with metastatic bone disease, with a PSA of 5.8 which is an example of this. I have also seen metastasis of neuroendocrine tumors of the prostate which are extremely aggressive with undetectable PSAs. This is scary!
I know that I have not answered these questions well. Despite being a urologist I am not an expert on advanced prostate cancer. As a patient I too look for the magic pill which for the moment does not exist. I not think metformin is that magic pill or an other off label medications which I take or other patients take. I do think that prostate cancer needs to be tailored for each patient depending on there age, comorbid conditions, stage and Gleason score.
Not long ago I went to a lecture given by a very prominent urologist with progressive prostate cancer. Basically he described his battle with cancer as dancing with it. For some of us where the tumor is incurable in the beginning when I underwent chemotherapy upfront it was more of a preemptive strike and at this point it is now a slow dance hoping that I can of live longer enough and more importantly well enough for next technological advance.
I appreciate the opportunity to express my feelings as both a physician and as a patient.
Sincerely,
MN,MD
My husband (age63) was diagnosed a year and a half ago with highly undifferentiated (Gleason 10+, they said) prostate cancer, stage 4 with lymph involvement and growth outside the prostate. His PSA at the time was 3 and had been normal his whole life, and according to his doctors, he did not have cancer two months before they found the grapefruit sized tumor that had grown in and outside of his prostate. He has had radiation, three additional tumors removed in his urethra, hormone therapy, and is now undergoing chemotherapy. His PSA has jumped from a low of .4 to over 7 in the past 8 months. His life stinks at this point and I wondered if the urologist had any thoughts on whether there are any other options…..
I am 59 years old and i have advanced prostate cancer, i have been diagnosed 4 years ago. my first psa ,4 years ago, was 500 ng/ml and my Gleason 8 . It was mets. in the lung and in the right tenth rib, and since then i have been under hormonal thereby. my psa dropped to zero within 3 months after thereby and all mets. disappeared, but after one year with treatment my psa was 0.1ng/ml and on the second year was 0.2 ng/ml and third year was 0.3 ng/ml and on the the fourth year (now) it has been increasing for every four months by 0.1 ng/ml to reach 0.7 ng/ml. i tried intermittent hormonal thereby twice but the psa became 4 ng/ml within two month after the treatment and my doctors stopped using this regime with me. i feel i became resistant to the hormonal thereby. so i am asking for your advice regarding other medical treatment or how to make my body amti-resistent to the hormonal thereby. i would like to know what are the best centers or hospitals which are known by curing patients in my case, advanced prostate cancer.
i am looking forward to your reply and i will appreciate it if you helped me.
thank you,
Christina – I recommend that you immediately seek the care of an medical oncologist who specializes in the treatment of men with prostate cancer. Ideally, you should seek out the opinions of at least two of them. You need to do this IMMEDIATELY, as your husbands disease is very aggressive and potentially life threatening.
I also recommend that you join us on the Malecare Advanced Prostate Cancer internet Support Group. You can join by going to: http://health.groups.yahoo.com/group/advancedprostatecancer/join
Joel
Abdel, In order to answer your question additional information would be required. I suggest that you join the Malecare internet support group for advanced prostate cancer at: http://health.groups.yahoo.com/group/advancedprostatecancer/join ad share your complete history and questions in that forum. Joel
We have a medical oncologist, a radiation oncologist, as well as a urologist on my husband’s team. We also have been to Johns Hopkins for consultation. Our frustration is that he has had many unusual complications from his cancer, including the development of a fistula, which required the implantation of a superpubic catheter. I wondered if there are any other men out there with similar stories. His case appears to be so unusual, that his doctors are continually surprised by what is happening, yet they don’t want to give us any kind of prognosis…I think they have no idea, because of the lack of similar patients.
My husband was dx with a psa of 112 at 54 years of age,GS of 8, more than 90% bilateral involvement, perineural invasion, extracapsular extension, bilateral seminal vessels, and + lymph pelvic lymph nodes, after radiation, ADT, secondary hormone rx, his PSA never achieved a nadir lower than 0.23, he is now HR and his PSA is 30 , it was doubling ever week, he tried Nilandron which worked for 3 months psa down to 15 then back up to 30 in less than 30 days, scheduled to start chemo and started the pre-chemo decadron the day prior, the pre-chemo lab work showed the psa had dropped to 22, oncologist was impressed that decadron probably was reponsible for the decrease and gave us the option of going forward with the chemo or trying Nizoril and prednisone.We were ready for the chemo but this put us on the sopt and we decided to try it, now feel like we should just go forward witht he chemo as we believe we are just delaying the inevitable , he has bone mets to lumbar spine 1-5 , mets to rib and clavicle , had spot radiation to spind for pain relief in Jan.Would love an opinion on giving the Nizoril time or just going for the chemo ASAP.
PS: Forgot to mention that he is only 61 years old
Corinne,
I suggest that you join the Malecare advanced prostate cancer internet support group where we have 480 members who have had all sort of experiences dealing with advanced prostate cancer. It is my firm belief that 480 heads is far better than my one head.
You can join by going to: http://health.groups.yahoo.com/group/advancedprostatecancer/join
Joel
This reply is directed in particular to “MN, MD.” Thank you for sharing you story. As the wife of someone with advanced PC, I’ve been reading and following many postings on this and other sites. My husband with a Gleason 8 had a RP in Feb 2008 resulting in a PSA of 1.5 leading to 40 days of radiation in Sept. 2008. PSA was finally undetectable until March 2010 when it rose to 7.0 and he began Lupron. There is some recent evidence of pelvic mets. Tomorrow he has a follow up PET and CT scan. We intuitively feel that it’s best to pre-empt hormone resistance, etc. Your story “MN,MD” is encouraging. We will continue to do our homework and bring clinical trials to the attention our medical oncologist. Wishing everyone well!
August 26th, 2010 will be 8 years since RP in 2002. Been through most of the therapy listed here, Lupron, 3X casodex daily. PSA went from 8.4 to 0.31 quickly and after 6 months is starting to rise again. Pain is noticeable now and will get myself ready for the 2nd tier of whatever the next drug is. Gleason was 3+4 and a low, stable PSA of 2.4 at biopsy. This is miserable to live with, but at least I’m close to Dana Farber for treatment, which is excellent. If we are terminal, then what is the problem with trying other drugs, though not approved yet, liabilty free by our choice? These standard treatments only delay our demise, and if I can get an extra month, I’d take it.
I recently received a recommendation from an OD to look up Dr. Leibowitz, an oncologist who has developed a protocol to attack prostate cancer right away after diagnosis with a three-pronged attack. He uses hormone blockade, chemo, and antiangiogenesis drugs for 13 months to try to knock the cancer out. His approach is very interesting to me, with my recent RP for Gleason 9 prostate cancer. Have any of you heard of Dr. Leibowitz, or of his protocol? His web site presents a bit of a character, so I have been a little leary, but his description of his program seems sound, and he came with a very high recommendation. (www.compassionateoncology.com)
I was happy to see that MN MD had tried this kind of approach. I like the idea of hitting the cancer hard right away, and Leibowitz explains how and why he does it. I’d greatly appreciate any commments, as I’m currently weighing how to proceed.
Hi All: God Bless all you guys and wives who are suffering from this bastard of a disease! I am a Gleason 4+5 after a robotic prostatectomy May 21, one side unilateral, some extra-prostatic invasion of left sv, perineural, perilymphatic, negative surgical margins, negative lymph nodes, stage T3b, been on Lupron and 50 mg of Casodex daily, received my 8th dose of adjuvant rt today, 2 gry a day, 28 more doses, our protocol was to take out the insurgent stronghold(my urologist thinks he did that with the robotic p., says “he’ll hang his hat on that, we are being very pro-active and preemptive in our approach, stun any remaining insurgents with the adt, then kill them all if possible with rt. I maintain a positive attitude, although this disease certainly changes your life forever, have supplemented strongly my diet with soy products, fish oil, COQ10, Garlic, Ginkgo, Milk Thistle, Saw Palmetto, Tumeric, lots of avocados, tomatoes, green tea, almonds, fruits, etc, backed off on red meat, take care, really I pray for all of us, I think we will have some new meds. and technologies within 5 years or less, but who knows, keep up your courage, perserverence, and sense of humor, God Bless you all, Tony
Joel,
Thaks for this great website ! I am a subscriber to the advancedprostate group on yahoo too.
Question wrt to this post is – How is the Urologist doing now ?
Did the aggresive approach i.e early chemo help with the cancer
A response to that will help all of us a lot.
Thanks,
Swati
I as well as my friends were looking through the great tips and tricks found on the website and then instantly came up with a horrible suspicion I had not expressed respect to the website owner for those techniques. The guys were definitely certainly warmed to read them and have now sincerely been taking pleasure in them. Thanks for getting so accommodating and for having this form of essential subject areas most people are really desperate to be aware of. My very own honest regret for not expressing appreciation to you earlier.
My husband was dx with PC at age 64 years a psa of 64 rising to 80 after biopsy, GS of 7, metaseses in his hip. and an attached lymph node.
After hormone treatment of Zoladex and Casodex PSA reduced PSA reduced to 0.6 and after bone scat undetectable metaseses and lymph node which was maintined for about 16 months and then PSA started doubling and by Oct 2010 PSA 21. Started on a trial at the Queen Elizabeth Hospital Birmingham UK on chemo doxatacel for the next 10 months and prednislone + one I.V. injection of Stronium89 a radioactive drug which attaches to the bone metaseses.
Chemo/Prednislone was a rough ride, diarhoea, tiredness and just feeling very unwell. Admitted to hospital 4 times mostly because of neutropenia and the last time multi pulmonary emobolism and now on Warfarin and routine blood tests as a consequence. Also a side effect of chemo is peripheral neuthropathy which he has particularly in the left foot, which gives pain in his foot and odeama.
The positive no further metaseses since commencement of the chemo, PSA dropped to 0.06 but started to rise straight after to 1.0 after 4 weeks 1.5 next appointment 26th October, 2011, holding breath and waiting to see. Been advised if he has pain and PSA 3.5 will be commenced on Arberitone, without pain wait until PSA 5-10. We are thankful to be offered this treatment as it is not open to everybody.
My huband is still very tired by the afternoon and now he has cut the Prednislone to 1mg experiencing joint pain. Is this just old age as we are now 67 years old, but very young in heart and hopefully look that way as well.
All we can do is go along with whats on offer, keep going, waiting for new treatments and hoping for good results at the next hospital appointment with onocologist.
The only thing we do think since we have been going to the hospital we are lucky (at the moment) compared to many other people that we see at the hospital.
Hi, my husband of 62 has been for his first PSA which was a very scary 500 we are scheduled to see the urologist tomorrow. We do not know what to expect or what he is going to do. Our doctor will not commit himself and say it is cancer or not.How long after this first visit to the urologist will we know if it is cancer or not. The doctor did a physical exam and found the prostate enlarged and firm, my husband has been feeling very fatigued,he had lower back pain for about 3 days prior to the PSA test but mybulen seems to have cleared it. He has lost 11 kg’s in the last 18 months and a further five in the past week. The waiting is unbearable.
The urologist will probably perform a biopsy which will take a week or two get back the results. The urologist might also re-take a PSA test as well as a DRE. With a PSA of 500 and a prostate gland as described there is a very high chance that your husband has advanced prostate cancer. If he does I would recommend that you find a medical oncologist who specializes in the treatment of prostate cancer. I would also suggest that you encourage the urologist to immediate start ADT (hormone treatment). – Joel