Well it’s been 13 years since diagnosis; G 9, PSA, 4.2 Dr. Dattoli, IMRT, Recurrence; 3 years later, more radiation DART & continued ADT. Then on to Dr. Myers for the next several years where we followed Snuffy’s protocol as best we could. It’s been tough for my husband but he manages to still keep active and enjoy life; fishing, bird hunting, a little biking. Long term radiation effects are starting to creep up, ureter and bladder issues. He continues on Lupron, now Eligard Dr. Drake, our new oncologist, says he’ll have to stay on forever even with its devastating effects, weight gain, muscle loss, ED, the list goes on. That was disappointing to hear. We were hoping for a lupron vacation. PSA is creeping up over the last year; .05 to .589. At our second appt. this week we talked briefly about TRT but waiting for results of a new study. Dr. Drake thinks he’s a good candidate for provenge. Due to get another CT scan and bone scan next week to start the process. Would appreciate any tips regarding provenge treatments. We live in CT and would like to use a facility close to us.
New Onc New Direction: Well it’s been... - Advanced Prostate...
New Onc New Direction
Donna, he does sound like a good candidate for Provenge. If the PSA keeps rising (it does not necessarily fall on Provenge), the next step could be Xtandi or Zytiga.
My delayed radiation effects (blood) resolved by themselves in time.
Was there anything your husband was doing with Dr. Meyers that he can still do?
My husband was on Xtandi for 1.5 years along with leukine shots daily. He was also on revlimed but suffered a blood clot and was taken off. He will not take Xtandi again due to severe quality of life issues. Dr. Drake mentioned Zytiga as the next step after Provenge. I was hoping for a new approach away from ADT. Reading now that there are other approaches mostly chemo. Not sure we are ready to go there.
I don't want chemo either. When I was diagnosed, it was general consider a late option. Studies show now that early use can be beneficial. I still prefer to wait. I'm using Xofigo now. One infusion down, five to go.
We are continuing with Lupron and Advodart along with a Mediterranean Diet, Vitamin D supplements. This is not a complete list of supplements and /or that Dr. Myers has prescribed over several years. At our last appointment he suggested we stay with these recommendations until we see our new oncologist Dr. Charles Drake. Dr. Drake hasn't made any changes to the earlier protocol except for the additon of Provenge. We are at a crossroad when it comes to continuing Lupron as my husband recently had a cardiac arrest due to arrythmia. Since then thru research and consults we are getting mixed messages regarding a connection of hormones and electrical messups in the heart. Don't know what our next step will be after Provenge. We are consulting with another Onc at Yale.
Thirteen years is great news for a Gleason 9 patient but I know it’s been tough being on ADT. I’m about 4 1/2 years out since dx in 2013 at age 69 with stage pt3b and treatment with RP followed by three bouts of RT about a year apart ( to prostate bed, pelvic lymph nodes, femur). I’m on ADT3 for the third time.
Strangely, the SEs during this session of ADT have not been as bad as the other sessions. I guess that metformin, statin, estradiol patches, cabergoline and vitamin D3/calcium recommended by Dattoli are helping. I also take cymbalta and Celebrex both of which, along with exercise help reduce malaise and joint pain. And I’m on xgeva after a small bone met.
I could live like this for another hopefully dozen years!
Bob
Break60, Yes we are still incorporating some of Dattoli's and Myers' recommendations: estradial patch, vitamin D3, statins. Coundn't tolerate Metformin. Dr. Drake hasn't talked much about supplements but we have seen him only twice. Due to see him after my husband's scan in order to qualify for Provenge. Has that been recommended to you yet?
It’s been mentioned as a possible next step if/when ADT3 fails
Wow! this is the first time I've read Dr. Dattoli's name mentioned in years. What IS he doing-still same ole, same ole in Florida? Years ago I spoke with him and found him to be a very caring individual.
Donna,
YOur hubby's plan to have a CT. Historically, CT wouldn't tell much at a psa of 0.5. Maybe new technology is better but I'd definitely check before spending time, money, rads. Usual reference has been to "greater than 2" before conventional CT will catch anything.
herb
herb1, we will be looking for more sensitive scans after we get approval for Provenge. Doctor Drake felt we needed to get bone scan quickly so that we can start the infusions.
Sixteen years since Dx and have been on Lupron for 7 yrs and Zytiga and Xgeva for 5 yrs. Now PSA up to 15 and started Xtandi, hoping for good results. Have had no Dox or Tax chemo as my Onc enabled me to circumvent. He said he found Provenge not really effective (could explain why Dendreon, the Mfg's stock tanked and company was bought by Vertex.) Several trials did show a 3 months longer survival rate than the control group who had infused traditional Chemo. Would investigate other therapies like Zytiga mfg by JNJ. My is Onc is Dr. Agus, head of USC Prostate cancer center in LA and has treated numerous business execs. and celebrities.
" We live in CT and would like to use a facility close to us." Where in CT, for I could, based on experience, recommend two facilities depending on what part of the state you live in.
Rich
I haven’t been participating in this forum for the last three months. I have been too busy trying to get my husband back to our new normal. Briefly ct scan that was required to qualify for Provenge showed a mass in the pancreas. Required a biopsy of the pancreas but once in there did not see any focal tissue to biopsy! Three days later my husband has cardiac arrest while we were bird hunting. We did cpr and got his heart beating again. EMTs took over and we spent the next two weeks in hospital. He has a defibrillator now and is doing well. Now we are looking at Provenge again. I believe years of hormone treatment contributed to the arrest and arrhythmia. Any thoughts?
Preparing for Provenge
PSA RISING
17 years of various treatments
