I truly hope you're all feeling well. I think of all of you every single day. Life is so busy to tell you that every day though Just know that someone does care ♡
Dr. Myers referred us to a local Doctor...Dr. Oyer....who said he has worked with Doctor Myers for 10 years but...... Doctor Oyer...Ann Barshinger Cancer Institute said he did not think he was the right doctor for Elgie. His bio says he specializes in prostate cancer but he said he specializes in ovarian and genetics. We don't want a doctor that does not want us. Dr. Oyer sent us to the local Dr. Brennan....Ann Barshinger Cancer Institute.
We ask Dr. Myers for another referral and he referred Elgie to doctor Ferrari at Rutgers due to not producing psa and cancer only in Elgie's bones. Anyone have experience with this Doc?
I am wondering if there is ever going to be another doctor who will order or approve the better scans, new testing, etc. and not try and tell us that the pet scan is better than the F18 or the future scans . Our local Oncologist would never order or approve the F18 scan and now there are better scans and better treatments. I have been told but I'm not sure if this is true that the insurance companies tell the doctors not to order the more expensive better scans. How do you get a doctor to do these scans, testing etc? After Dr. Myers..... you will all be our knowledge.....our local doctor stayed so much in the box and tried to convince us it was the best scan or watch and wait, etc. It's scary to start over again and possibly not get the best treatment available. I hope this is all understandable.
Most sincere good wishes for each of you and hugs too
Jackie
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erjlg3
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Yes, I can imagine it is scary having to change doctors, especially as Dr. Meiers sounds like a wonderful doctor with a lot of knowledge who is willing to try everything.
I hope you will have a doctor with whom you can establish a trusting relationship soon.
Wishing you both good luck finding a new doctor. You would think that having cancer is enough to deal with. So sorry that you also have to fight "the system".
Thank you Patrick! I finally found out what that search is for. It took a few times but I found the post I'm going to call and see if she is accepting new patients
You might want to goggle Dr. Maha H. Hussain, MD. She ran the prostate cancer center at the University Of Michigan before taking a position at North Western University in Chicago, She is a Internationally renowned clinical researcher and was my oncologist before moving. She is extremely thorough, stays on top of ground breaking techniques and treatments. To be blunt, all the oncologists in Michigan told me the same thing, " go see Dr. Maha H. Hussain." Now this just is my two cents, take for whats its worth.
Thank thou so very much nameless9999! I scheduled Elgie with Dr. Ferrari for mid November. I will keep Dr. Maha Hussain if we're not pleased with Rutgers
Hope your unexpected plight will be resolved soon. If you are not going to be happy with Dr.Ferari, I think you can count on the MO recommended by nameless. I trust nameless for his sound judgement in problematic situations.
I'm liking the checking into seeing if Penn has a Mayo center :)) I do think the Johns Hopkins would-be good for some... I'm hoping they have improved. Elgie started there quite a few years ago and they gave him a 6 month injection of Eligard and he was in bed for about 8 to 10 months. No labs for 6 months no follow up for 6 months. I wheeled him in when we went back for 6 month follow up.... there was no change in the game plan so we changed the plan. We found another doc thanks to Chuck Maack and the Ole gang. That was when we were babies we're not much older than that right now lol but we at-least have all of you to guide us as to what we should do or what we should ask for etc. You're all the BEST ♡
I am a patient at Johns Hopkins hospital for their sarcoidosis clinic and I see a doctor Moller and a Doctor Chen. I'm sure it is a different doctor Chen I have never heard of the treatment that you are on. Have you heard of the Bilirubin trial? That sounded very fascinating! All of this...." They have been involved in the Stampede Trial, and the BAT Trial, is on going right now[Using very high levels of Testosterone to Kill, and make Pca cells powerless]. Does not work for all stage 4, but a British Trial had a 50% range of good results. They may also be involved in a Phase 3 Pectasol-C, something I use" .....sounds totally fascinating to me. It makes me excited for all of you that they are working on better things to help you all to be well. Well I'm going to have to Check-In to all the doctors that you and others have Suggested doctor Hussain doctor Ferrari doctor Chen and University of Penn. We went to the oncologist today and I will probably write a few things about that later as I have to make dinner thank you so very much Nalakrats. I love watching your brain work on here even when I dont understand But lots of times you make it very understandable
My husband is stage 4 PCa in remission. He had his open RP with Dr. Ross at Hopkins (no longer at Hopkins as he moved) surgery was flawless with clear margins and 54 clear lymph nodes but GL 4+5 and EPE. Staged pt3a L0 MX but with persistent PSA at 3 months post-op. After PET/PSMA trial at Hopkins showing micro mets and after nuclear bone scan showing 2-3 possible bone mets, he had radiation and ADT at Dattoli in Sarasota, FL to pelvis and spot radiation to all bone mets per Hopkins MO's recommendation.
Dr. Ross recommended Dr. Antonarakis as MO when my husband asked for a recommendation. Dr. A recommended genetic testing based on my husband's family history. Testing showed my husband has a defective DNA repair gene -PALB2. Knowing that will change the course of treatment when ADT fails. We are a bit ahead of my husband's disease in seeing an MO at this time, but we have both been very confident in everything Dr. Antonarakis has mapped out for my husband concerning his situation.
I understand taking matters into your own hands when you were not satisfied. We did that concerning radiation as we just did not click with the Hopkins RO and went elsewhere. But to date, we are extremely pleased with Dr. Antonarakis. i would say he is worth a consultation. Very concise and precise. And he seems to view treating his older patients as if he is treating his father. I hope this helps. And I hope you find the right dr. for you and your husband.
Absolutely it helps! Every single reply helps in one way or another. It's so great to read that your husband is in remission. I'm more familiar with going to the area of Johns Hopkins as I grew up in Baltimore. I remember my mother would send me on to Bus #62 to go there quite frequently. It's so much easier to go somewhere that you are familiar with which would make it easier for me to take Elgie. I can't imagine driving in or near Philly but I'm willing to if necessary
We were also quite pleased with Elgie's radiation at Dattoli. I'm quite surprised that Hopkins referred you there but impressed. It sounds like both of you and your docs are doing an awesome job keeping hubby well Don't forget to take good care of YOU too
I wasn't clear - Hopkins did not refer us to Dattoli - we contacted them ourselves. My husband really didn't want to do 8 weeks of radiation in Baltimore. He loves the Sarasota area and decided to go there for his treatment based on that. It was off season so he got a good rental rate on a small apartment. Hopkins did recommend the spot radiation to bone mets and micro-mets, and they did agree to radiate those along with the pelvis at Dattoli.
Who are you seeing now? We were with snuffy then dr Ferrari who we liked but she moved to my Sinai. Now have appointment with dr Drake at Columbia next week
Elgie is staying local at this time of remission but decided to see a different local oncologist. Dr. Brennan at Ann Barshinger Cancer Center in Lancaster, Pennsylvania.
My husband was a patient of Dr. Meyer’s and we are in need of an oncologist like him. A doctor like him is rare and hard to find. We feel he saved my husband’s life. Too many doctors only consider the gold standard and do not combine drugs or keep abreast of new drugs being developed.
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Just know that someone does care ♡
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