Advanced Prostate Cancer
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Communication with your Dr

I have moved from long term relationship in a private practice Med Onco to a Med Onco located in a major Hospital Group Setting. Formerly, I sent questions via the Dr's web portal message system and received answers in a reasonable time, especially in higher priority instances.

I am in the middle of my first experience with my new Dr ( who I like and is a major player in the field). There is a web portal and the mechanism to send the Dr a message exists, but was told it does not work. I just sent a message to their site's webmaster and they are currently looking into this defect.

I called the main Dr number and left a message about a recent blood test that is out of normal range. The person at that desk was very friendly and said that she was tagging the message as "urgent." I voiced my concern that I am a new patient and didnt want to be labeled a "difficult patient" , especially as I havent built up a long term relationship yet. She said dont worry, there are no problem patients there. After a couple of days and not receiving any answer, I left a voicemail with his nurse that is on my case, am awaiting any response.

I would imagine that in a large hospital setting turnaround times are quite different than in a private practice setting. I dont know what is typical, normal or acceptable in this new setting. I would appreciate what others, who have experience in my new type of setting, are having and what they feel is normal and acceptable.

50 Replies
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Turnaround times most likely have something to do with the doc than the institution.

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thanks, he recently transferred from another big institution, perhaps his org needs some startup time

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In my local Hospital, If I send a message to My MO, She will reply early in the morning the next day she is in Clinic, and sometimes sooner. I get all my labs through the portal, and pay my copay there, and check appointments.

What Blood marker was out of range?

Dan

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Dan

Thanks

I have been on Xtandi since 2/16, undetectable PSA since then; however , testosterone jumped very high when on xtandi, hasn’t substantially dropped even though Xtandi dose sharply down, recently my LH levels checked and correspondingly also too high

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Sounds like it is time to get a lupron/zolodex shot , if your intention is to lower T.

All the best,

Dan

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My concern is what is the root cause of this phenomenon. From what I read, normally the hypothalamus and pituitary send signals ( mainly via LH to produce Testosterone. There is a negative feedback loop that signals to stop producing T and shuts the LH signal, when T has reached appropriate levels

FSH and Free Testosterone is normal

Now it may be true tha Xtandi is operating, as indicated by some clinical reports, however, with the sharp drop of Xtandi intake for a number of month’s, one would think we should be seeing some corresponding drop in the LH

Dr told me back in 2/16 that given the immediate drop after starting Xtandi to undetectable, my Pca is “exquisitely “ sensitive to Xtandi

Apparently, both the LH and FSH are produced in the anterior of pituitary. If Xtandi is not source of this problem, my fear is some form of tumor developed in pituitary

That is the main issue, I want , at this time, to discuss with Dr. Suspect he will say the classical: “ doesn’t think that’s the problem but let’s take scan to make sure”.

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It is my understanding that xtandi is an antiandrogen, and thus it blocks The T from the adrenals and prevents it from binding to the androgen receptor(AR). I believe zytiga on the other hand blocks the LH, as does Lupron, I am no Doctor, but I read a bit and have been in this battle for 11 years.

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Why do you need a fancied up Patient Portal to get your test results? In most states they are sent to the patient as they are sent to the doc. In fact, it was embarrassing-I was getting my psa results before my urologist got them.

herb

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Thats awesome Herb. Maybe to prevent the patient from getting them first.

Thats just the way they do it here, She reviews labs, and sends on to me with her comments, and I can reply, I think it is more for healthcare communication with the provider, request refills, and pay the co pay right there too. And all your records and test results are there as far back as you want to go.

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Herb1

Good point

In this case, the only reason I do know my results is because I got them via Labcorp directly

My issue is getting what the dr thinks about this island what, if any, he wants to do about it

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Labcorp sends them to the patient via a portal after they’re sent to the prescribing doctor . Includes years of past results as well. Very nice!

Bob

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Are you on any primary ADT such as Lupron, Zolodex, etc.? Those should lower your testosterone. Xtandi does not lower testosterone, it blocks the receptors.

Here's a quote from an article: It may be counterintuitive to some readers, but anti-androgens such bicalutamide and enzalutamide do not lower serum T. Instead, with these drugs the serum T remains at baseline values or actually increases.

pctrf.org/pca-commentary-vo...

What level is your testosterone at?

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gregg57

Thanks

T is 1644.8 range norm 264.0 to 916.0, before Xtandi was in 900 range

LH 18.9 norm 1.7 to 8.6

FSH normal

Free T is normal

Had ramped Xtandi from 2 per dayto 4 per day then down to 3 per week

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Are you on primary ADT such as Lupron? There is what they call a testosterone "flare" from some primary ADTs (Lupron for sure). But that's only when you first start. T levels peak in around 3 days and doesn't last more than a week or so. I believe by 3 weeks you should be at castrate levels.

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No primary ADT

Only Xtandi, metformin, Celebrex, avodart, other meds such as Crestor, and many supplements, not quite as many as Nalakrats

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Found this about Xtandi use without primary ADT: "As expected from a potent AR inhibitor, sex hormone levels were substantially increased from baseline, with the greatest changes observed for luteinizing hormone, testosterone and sex hormone-binding globulin. Luteinizing hormone and testosterone levels increased rapidly in weeks 1 to 5. Luteinizing hormone levels continued to increase slightly through to week 25, whereas testosterone levels plateaued around week 13."

Here's the source:

ncbi.nlm.nih.gov/pmc/articl...

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Thanks

Seems that paragraph is all the info on this, given we are talking months since sharp drop in dose, still raises an issue perhaps

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In reference to your original question, I believe I had the same private onco you're referring to Dr. Myers. I recently started seeing Dr. Sartor, also a major player in the field, who is affiliated with a large hospital and university/research center and he gave me his personal email rather than use the hospital portal, to send questions etc. I sent two different follow up questions after my initial consult with him and in each case he got back to me in less than 24 hours, I was very pleased with that.

Ed

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Hi Ed

Looks like there is a problem with communication with my new doc. I was thinking of doing phone consults with Dr Sartor, who I think is in California and who Dr Myers thought quite highly of. I guess an initial mtg with him in California, followed by phone consults as a possible strategy.

Having both in my team would make me feel better; how to deal with awkwardness of discussing this with New dr is an issue for me

Where are you located? I remember one person from Pennsylvania who went from Dr Myers to Dr Sartor.

Thanks

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Sartor is in New Orleans so it makes for a fun place to visit, however I blow my Mediterranean diet when I'm there, LOL. I live in Atlanta so distance compared to Myers is about the same with less concern about winter weather.

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Ed

Must have confused Dr Sartor with somone else.

What similarities and differences do you find with Dr Myers vs Dr Sartor?

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Both are very knowledgeable, Sartor has good bedside manner like Snuffy. Sartor is in a large medical/research facility in the heart of NO vs. Snuffys small town individual practice. Sartor is a bit more conventional than Snuffy and sticks to FDA approved treatment where Snuffy was definitely out of the box. I feel that I'm a in good hands with Sartor he keeps up with latest treatment and already is having genetic testing done on me that could be used for future treatment or to alert my kids of hereditary genetic issues. They also do a lot of research at Tulane so I view that as a plus. Staff was efficient, easy to make an appointment with and very little wait time during my first visit. Sartor focuses mainly on PCa where Snuffy was a whole body practitioner.

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Ed, You were probally thinking of Dr Mark Sholtz in LA, He is also in Private Practice

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Yes , Scholtz that’s the dr in California!

There are some options.

Thanks All

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Edbar

Thanks for the comparison between doctors Sartor and Myers. I’m still using Dr Dattoli, an RO in Sarasota who treats only PCa and who treated Myers and uses his regimen of supplemental drugs so is considered unconventional or outside the box. He treated my pelvic lymph nodes with IMRT.

My question is if Sartor goes by the book unlike some MOs why is he considered so good? Does he focus on stage 4 cases? Is it because he focuses on PCa and is up to date on the science? Does he accept Medicare and Medicare supplement insurance?

Thanks

Bob

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I would say it is because he is on a short list of the best research Oncologist anywhere, He has published a lot on Prostate Cancer, and he knows an awful lot. He was My MO at one time when he was displaced at Dana Farber during Katrina.

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Bob,

Sartor worked with Snuffy at the NIH and has published about 300 papers according to Snuffy on PCa. Snuffy highly recommended him. When I asked Snuffy about another facility in Tampa he said they don't even come remotely close to Sartors expertise. He said I would be in good hands with Sartor and he has directed many of his patients there. Sartor took my insurance and I would imagine he takes Medicare. He reviewed Snuffys current treatment plan and agreed with it making some subtle changes to dosage in order to reduce SEs, since I am in a sweet spot right now.

Ed

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Ed

Thanks for the info.

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I am also a former Dr. Myers patient and I have some experience with large teaching hospitals. Some hospitals make a real effort to avoid the pitfalls of bureaucracy, others do not. As a patient, you are caught in the middle because, generally speaking, the best doctors are at large hospitals. It can be extremely frustrating. I would voice my concerns to the doctor. It may be as simple as that. If that doesn’t work, I would identify the nurse or nurses assigned to that doctor. Try to find one, like Maxine, who will respond to your inquiries. If this is unsuccessful, I would seriously consider looking for another doctor. I have had several well known doctors who were princes.

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Most large hospitals, especially teaching hospitals, have a patient advocacy program. I utilized mine recently and received satisfactory results.

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Thanks

That’s a great idea; was this person listed on the hospital site-how did u find him/her?

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Had lunch with two retired MD specialists Saturday. The three of us agreed that Drs suck! Communication skills are at top of bad list; but professional skills aren't much behind. We're a threesome with recurrent prostate cancer, recurrent colon cancer, undiagnosed parkinsons plus other comorbidities. And these are 3 guys who were physically active into our late 70s. Patient Portals? Haven't seen one work yet, and the personal data is all wrong!

I want to make it clear I am dealing with top line docs in and near NY who should be setting the pattern for the rest of the world! shame!

herb

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herb1

Wow-thats a heads up; quite scary

Do you think its the same all over US?

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More on this, it's gotten my goat. I have an internist, a cardiologist, an oncologist, a nephrologist, an ENT, an eye doc, a dermatologist, a dentist, and a veterinarian. NO ONE has an accessible email address where I can reach them without playing phone tag.

h

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herb1

Thats true in my experience -- they shield themselves ; some of it is understandable fear of patients abusing this access ; however, the Drs use that excuse to filter out the reasonable and understanding patients, who have a real , critical and reasonable need and are left out in a lurch

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I agree that patient portals are hard to access . But I go through the head nurse to ask questions of Dr Dattoli and she responds quickly. They don’t have a portal. He has his own practice though and treats only PCa. He started out at MSKCC and left 25 years ago partly in frustration with their bureaucracy.

Bob

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Dr. Dattoli and his staff are in a class by themselves--with a few others. I still remember his head nurse, Jennifer, from contact maybe 17 yrs ago. Outstanding. Also spoke with Dr. D--maybe an hour, one evening. The point is IT CAN BE DONE.

HERB

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There’s still a Jennifer there. She handles prescriptions. Dr D’s staff has serious longevity... some decades!

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My RO , Dr Dattoli, has a head nurse with some 25-30 years working with him to whom I email and she speaks to him ( if she doesn’t already know the answer!) and gets back to me within 24 hours.

Bob

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It is up to the Doc. and his workload. I.E. my Oncologist is the Head of Clinical Trials and Prostate Research, at the Institute. I see him every 3 months, he thinks twice a year is good, unless, I have a change warranting attention. So he leaves most things to my Urologist--they communicate with each other, as to my visits. My MO at Levine only sees patients 2 days a week. And one day is for new patients mixed in with regulars. Rest of his time is spent on Trials and Research. Now since I do not need much attention as of now, I am good with the relationship. I have a Dec. 11th---which I may cancel with a long e-mail, and reschedule for Jan. or Feb. depends on my monthly blood numbers. I do want to discuss, BAT, and coming off ADT totally, but keeping Avodart, Proscar, DIM, and Arimidex. T use if off ADT will also be on the table. So I have about 10 days to decide---leaning towards a face to face---but with an e-mail outlining my discussion points. I think this a good practice--e-mail your points of discussion--take copy in hand and hit them one after another.

So it all depends--I have a pretty good General MO locally---but he is handling all cancers---and says he cannot keep up with the research parers let alone the patients. I understand--I just got dumped with 50 Research Papers from around the world--and I am already a week into reading them. Its tough--but I would rather be attached to a Center of Excellence---as there is always backups.

Nalakrats

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Nalakrats

Thanks

So I need to do 2 actions, assemble a similar team and expand my research span

Can you share your research links or related RSS feeds ?

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I think it’s vital that we keep up on PCa trials and treatments ourselves. If for no reason other than to understand our MDs are talking about and asking smart questions.

Bob

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Agree---my MO heads Trials and Research, at his Center. So when I bring up one or 2 he usually fills in if he is one of the participants---and what they are seeing, so far. He has one that is not on any Clinical Trial Lists--he is doing his own, with selected patients of his. Told me the material is coming straight from the research lab, of X company. Being used on really late stage of stage 4 patients---had great responses---thinks he might have had about 6 remissions---when everything failed. Told me further, that if they had to keep a supply line going---it would cost about 26,000 dollars a dose. It was given to my MO to experiment with.

So there are things out there that we will never hear of, until we do.

My Uro, is different--he does everything below the Kidneys for men and women---I bring Papers, and Trials to him to take home--he has no time to be up to date on Clinical Trials, just for Pca.

While typing--I just thought we do not have a Moon Shot against Pca---not like the women do with BC. Anyway Keep keeping up. I will be posting a new one shortly.

Nalakrats

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Thanks

Aside from the Inspire link where do you suggest I get the rest of the links

Ps Israel was the best, didn’t want to leave-we lucked with a unique guide ( police captain and idf special force reserve captain with a brother in their parliament) and a great group-too bad u weren’t with would have really liked it

I placed that prayer note-hope it helps us- in wall , and found myself weeping

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Just saw us too international u posted

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Oh too cool your guide? God choose for you. Medscape, and Pub Med

Nalakrats

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One source is US TOO INTERNATIONAL----they provide about 40 papers a month on Pca.

Nalakrats

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The new prostate cancer infolink keeps up with PCa trials and news from the various associations.

Bob

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Yes thanks, My sources are bringing in Papers From China, of which I reported on the use of Iridium, Japan, Korea, surprising amount of stuff out of Australia. Anyway it is all good.

Nalakrats

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Thanks

Never tried setting up RSS feed, have tried it for this?

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