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Old 01-26-2013, 08:15 PM   #16
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Re: Can't get PSA to zero

Nothing is simple. Choosing the right (best) doctor is so important. Cost for Dr. Myers will be difficult but we can drive there in a day and stay with family in D.C. So it offsets cost of travel and hotel to MD Anderson. One reason I like Dr. Myers is he has so much material and endless videos out so it's easy to learn what his views are. So many of his conclusions mesh with my common sense view, so it feels like a comfortable decision.

Last edited by Mia99; 01-28-2013 at 12:32 PM. Reason: more research completed

 
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Old 02-14-2013, 09:30 PM   #17
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Re: Can't get PSA to zero

Hi Mia
I have been oof the board for awhile but came back on and noticved your post. I am a Gleason 9 with PSA 45 pre op in 2005. Roughly 3 years later after 1 year on Lupron, 1 year off and 1 year on the lowest I was able to achieve was .8-1.

I made the trip to Dr Myers and he has had me on Lupron, Casodex (generic) and Avodart intermittent triple blockade since. I have been successful in getting to <.01 twice during my on periods. However as soon as I went off it would start to rise.

Last summer he sent me to Sand Lake Imaging in Orlando Fl for feraheme MRI along with other scans. The MRI with Feraheme contrast was successful in identifying lymph nodes outside the area of my previous salvage radiation done pre Myers. I was in Orlando for 3 or 4 days and the only thing not covered by insurance was the Feraheme injection which was $1500.00 or so. In my case well worth it. Inmycase the F-18 bone scan showed nothing as did all the other scans.

I believe you must be referred by Dr Myers or Dr Dattoli from Sarasota. Dr Myers actually recommended Dattoli Cancer center for the radiation, Mike Dattoli did Dr Myers back in the late 90's when Dr Myers was diagnosed. I won't know the results for some time as they leave you on homones for a period of time after but the Dr's are very optomistic.

Also Dr Myers uses a number of stratagies to attack the cancer in those who have cancer that is resistive to first line hormone therapy. I find him to be have a great and positive way of dealing with patients. I only see him once a year when I comute to the mainland USA, the rest of the time I deal with him through his web site patient portal.

It is not inusual for Dr's to paint a negative picture for those of us with cancer that spread outside the prostate, with Psa's that don't drop below .05 after treatment even with hormones, especially if the start PSA was high and a higher gleason. However, Dr's that are on the forefront like Myers, Bravo, and Dattoli plus a number of others take a much more positive view.

All of the best

John

 
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Old 02-15-2013, 05:42 PM   #18
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Re: Can't get PSA to zero

John, thank you so much for posting and sharing your experience. I wish you the very best of luck with your results!

We visited Dr. Myers last week and were impressed. For the first time, we do feel hopeful. In our case there is extensive lymph node involvement and just one small bone lesion. So far the only therapy has been lupron. Dr. Myers believes there is a >90% chance the cancer is still hormone sensitive. This is really key. Our local oncologist was perhaps 90% sure of the opposite. Clearly it helps to consult with the best.

The plan is to continue lupron and add zytiga, casodex, ursodial, low-dose prednisone; also supplements Full Spectrum Pomegranite, Super Biocurcumin, Lecithin; and a Mediterranean heart healthy diet with exercise.

A very nice surprise -- Dr. Myers' goal is *always* intermittent rather than continuous hormone therapy regardless of staging. His goal for us is to accomplish remission and then discontinue hormone therapy. Whether we'll get there is another story but I can't tell you what a relief it is to have found a doctor who thinks it's possible; even likely.

Now our dilemma is who to see locally as a partner for doctor Myers. We will see our current oncologist while looking for someone better, *if* he will accept taking direction from Dr. Myers. Any suggestions on how to find someone in the Columbus, OH area who will have a positive outlook AND be willing to take direction?

Thanks!

Last edited by Mia99; 02-16-2013 at 05:39 AM.

 
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Old 02-17-2013, 03:07 PM   #19
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Re: Can't get PSA to zero

In my location Onco's are limited (2 total). Only one is covered by my insurance and he does not play nice with others. Fortunately my personal Dr is willing to work with Dr Myers so he gives me the scripts and blood test orders etc and any results are forwarded to Dr Myers, my Dr and me.

John

 
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Old 05-15-2013, 10:37 AM   #20
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Re: Can't get PSA to zero

I haven't posted for awhile but would like to share an update. My husband's PSA is now .4 and the prognosis is looking better.

Just to recap, this is a 48 year old with extensive lymph node involvement and a small bone spot diagnosed in Sep 2012. He responded well to lupron in the first six weeks -- PSA went from 358 to 7, but then began to climb again quickly. Local oncologist wanted to jump to chemo, saying 2nd hormone therapies generally fail if the first course fails so quickly-- and as for prognosis, expect one month to a few years left.

We made an appointment with Dr. Charles Myers in Feb with the PSA at 15 and he began a new course of treatment soon after, as follows:

Continued lupron since it was a 4 month shot, but in June that will change to Firmagon, which Dr. Myers says gets better results. He added zytiga, Casodex, and Avodart along with some meds to help with adverse effects of those drugs. Supplements are vitamin D, Caltrate, magnesium, fish oil, Full Spectrum Pomegranite, Super Biocurcumin, and lecithin.

So a few days ago it was .4 that's POINT 4, and has come down at each test since starting the new treatment. And side effects are minimal.

Thanks to this board for helping us find Dr. Myers and become educated enough to leave the first doctor. It's our first battle in a long road, but we're going in the right direction. Keep a good thought for us.

 
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Old 05-16-2013, 03:40 AM   #21
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Re: Can't get PSA to zero

This is a great report and may there be many more.

All the best

John

 
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Old 12-04-2013, 09:39 AM   #22
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Re: Can't get PSA to zero

Just to keep this thread updated... Once the PSA hit .2 it just stayed there. Dr. Myers did not think it would go down any further without a new approach. He added a daily Leukine injection to boost the immune system and re-wrote the lab order for the ultra-sensitive PSA test. Dr. Myers felt there was a good chance the PSA will become undetectable after 6 months of Leukine, saying that typically the PSA comes down a small amount each month (as it generally boosts the immune system) until finally the Leukine hones in specifically on the prostate cancer and kicks its butt. Pretty amazing concept.

If that happens, the plan will be to drop the continual Leukine dose and do a month of daily injections twice a year.

Results so far:

Aug 28 - 0.189
Oct 2 - 0.164
Oct 30 - 0.141
Nov 4 - ?

Nov 4 is today, so soon we'll know if the trend continues. Always a very nervous wait so wish us luck please.

The other thing we did was send the original biopsy sample for Caris Molecular Profiling. It identified the gene that caused Lupron to fail and also shows that my husband's testosterone uptake is 3 times normal. That is not the right technical term but apparently he is very very efficient in his use of testosterone. That is why bringing his testosterone level down under ten wasn't good enough. It needed to be shut down completely before we saw improvement. This is all such great info to have.

Just have to reiterate that our very first oncologist gave up when the Lupron failed in six weeks. He had told us that if the Lupron fails, secondary hormone therapy would likely also fail. He wanted to move directly to chemo and said life expectancy was between a month a couple of years. To quote, "there are very few bullets left in the arsenal."

I will always remember that if a doctor is out of bullets, it's time to look for someone with a bigger arsenal. Dr. Myers is so incredibly creative. Thank goodness we found him.

Anyway wish us luck today. And if this gives someone else some ideas or hope, all the better.

 
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Old 12-05-2013, 02:47 AM   #23
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Re: Can't get PSA to zero

Mia99

I am very glad to read about the improvements. Myers is a magician. He is my hero and I hope he is around at the time I will need his advice too.
The Molecular Profiling is new and not many oncologists believe in its use as a tool for treatment. This is also part of the weaponry that good cancer care physicians use. In Europe it is not covered by the national health systems.

Best to you.
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Old 03-04-2014, 08:25 AM   #24
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Re: Can't get PSA to zero

We had a small detour in treatment but it's back on track. Earlier I had reported these PSA results after starting Leukine:
Aug 28 - 0.189
Oct 2 - 0.164
Oct 30 - 0.141
Nov 4 - ?

The PSA began to climb at that point, very slowly. It hit .31 on 1/8/2014 and Dr. Myers was ready to discontinue zytiga and move to xtandi. Then we mentioned the urologist had prescribed Megestrol for hot flashes. Shame on all of us for not making sure Dr. Myers cleared it. Well apparently Megestrol interferes with Zytiga. After stopping Megestrol, the PSA dropped quickly to .187 and is now .180.

Bone scan shows bone mets are completely inactive. CT scan shows bone still needs to heal but all lymph nodes test normal now (at onset, sudden painful lymph node sent us to ER, so lots of progress made.) Dr Myers is calling the cancer 95% killed. Thinks low dose prednisone may be keeping PSA from dropping to zero, so starting Inspra and stopping prednisone. Also increasing estrogen. Goal is all about healing bone right now.

Please send good wishes our way. The idea is when PSA is undetectable and bone mets completely healed, we go to Sand Lake in Orlando for feraheme contrast with Dr. Steven Bravo. They can detect trace cancer in lymph nodes. Radiate those ... drop to maintenance that includes leukine injections daily for one month every six months, for a couple years... probably some other stuff but no hormone therapy.

Stage 4 cancer treated by Dr. Charles Myers for one year and we're at this point without any side effects other than hot flashes... The original had oncologist predicted end of life right about now.

Even though every case is different, I hope this info can help someone else and we'd welcome any advice that comes to mind, of course.

 
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Old 03-04-2014, 09:00 AM   #25
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Re: Can't get PSA to zero

I should add one more thing. We were in Dr. Myers office a few days ago and he made a rather bold statement. All (yes all) his long term survivors of metastatic pc had Leukine as part of their treatment.

 
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Old 05-02-2014, 04:27 PM   #26
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Re: Can't get PSA to zero

Hello Mia,
Just want to connect. My husband has a rapidly rising PSA, Gleason 8, but we can't get in to see Myers until October 3 (he is so booked up). My husband's PSA is doubling every month and is now 7 but the doctors here in Canada want to "watch" it. He is on ADT but obviously it's not working any more. So frustrating. We have spoken to Dr. Lam in Cali, but even if he prescribes Zytiga or Xtandi, we can't get it as it costs way too much. (One or the other is free up here, but not both). Grr. So glad your husband is doing well. It gives us hope.

 
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Old 05-02-2014, 06:17 PM   #27
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Re: Can't get PSA to zero

Antonia, I know how you feel and your husband is fortunate that you are doing your research. Are you saying you can't get both xtandi and zytiga? This I know-- when leukine fails it does NOT necessarily mean castrate resistance. Leukine failed for us quickly even though initial response was good. If you have a choice, zytiga is working well for us as 2nd line. xtandi is for castrate resistance from what I've read, so we have not gone there. Be sure your dr. considers the dangers of zytiga though, and pairs other drugs accordingly; for example, ours was paired with low dose prednisone but I lose track of which other things were required with it.

If you have an appt for oct 3 with Dr. Myers that's a good thing. You can start some of his program ahead of time. Watch his videos. Mediterranean diet, no pork or beef, wild caught sea food, zero fat grass fed dairy, white meat poultry no fat/skin, only olive oil no veggie oil etc-- no corn products and those are in EVERYTHING. Organic everything is always better even though we're having trouble adhering to that one. My husband has gotten hooked on pistachios for a snack, very good. Not a lot of carbs; watch the weight gain. Red wine and exercise are good (maybe not together). Don't underestimate the importance of lifestyle. Dr. Myers said to us -- diet underlies everything. If you don't follow it, nothing else he does will work. (If you think about it, the fact that lifestyle has an effect is very empowering and hopeful.)

Again, Dr. Myers has tons of videos and info on his site that will be helpful. Every case will be different so I'm not prescribing... but he has directed very specific things (for us) and SOURCES for that stuff. Nordic Natural Ultimate Omega fish oil from Amazon (4xday). From lef.org: Super Bio-Curcumin®, 400 mg 60 vegetarian capsules (2xday), Full-Spectrum Pomegranate(1xday), Lecithin (1xday). These we pick up anywhere- Magnesium. Caltrate. Vitamin D. Test for vitamin D and take supplements to test at least 50 mg/nL, in fact we're staying around 70 mg/nL.

Dr. Myers won't care what the Gleason score is. His goal is remission no matter what, and he will be very creative / customized about it.

Today was a great day for us-- psa down to .047 and rapidly falling, so fingers crossed that it will be undetectable soon. Hoping to get off some big drugs at least for awhile.

So yeah, remember I have no medical background and every case is different... Keep us posted, ok? We are a team.

Last edited by Mia99; 05-02-2014 at 07:10 PM.

 
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Old 05-02-2014, 07:02 PM   #28
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Re: Can't get PSA to zero

I should add one more thing. The office staff works with insurance companies on behalf of patients to justify coverage after initial rejection. We have one thing pending right now that they are trying to get covered. In the meantime, they contacted the company and got us approved to get the prescription for free under the company's assistance program. Not many people can afford these price tags and there are some drug company programs to help.

 
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Old 05-02-2014, 10:04 PM   #29
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Re: Can't get PSA to zero

Thanks so much for all this info, Mia. Very helpful. We do a vegetarian version of the Med. diet and take all those supplements and a few more. So far, it hasn't made much difference, although his PSA could be much higher without this approach.

I understand that Dr. Myers doesn't consider a person who fails first line ADT to be "castrate resistant" as we have been told. I hope they get a cancellation and can see us earlier. He really does seem to customize treatment.

The first prostate cancer specialist we saw up here cautioned us on our first visit not to get involved with "these US doctors like Myers who have bizarre ideas about treatments" (combined with a shake of the head and sneer). We decided at that point that we didn't want to deal with him. When Dr. Myers saw my husband's numbers, he had Stephanie write us an email saying that it would be better for us to get immediate treatment with this particular doctor, "...since he will provide the same opinions and level of care as Dr. Myers." My guess is that Myers knew the doc was well respected in medical circles but had no relationship with him and so wasn't aware of his negative opinion of him (Myers). We walked out on this doctor as he was extremely obnoxious and disrespectful, so I emailed her and told her that there must be some misunderstanding as this doctor very definitely did not embrace the same ideals! This happened two weeks ago and we have heard nothing back so we are hoping that the October 3 appointment is still on.

We will also call Dr. Lam and ask his opinion on whether it should be Zytiga or Xtandi. Due to the fact only one drug is covered by the BCCA, they seem to take an "either or" approach rather than, "We'll do this one until it fails, and then try that one..." I feel like tearing my hair out half the time. Zytiga is prescribed with prednisone, at a standard dose. They didn't seem keen on the idea due to my husband's family history of cardio disease.

Good to know that the manufacturer might cover some of the cost!

Thanks again for your time. Wishing your husband the very best. Oh and yaaay! to the further drop!

Last edited by Antonia52; 05-02-2014 at 10:11 PM.

 
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Old 05-03-2014, 05:01 AM   #30
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Re: Can't get PSA to zero

Yes we got that sneer from our first oncologist and much the same comments. The standard dose prednisone sounds kind of scary so thought I should tell you our dose is 5mg 2xday, a low dose. Also I think his Ursodial and Vivelle-Dot prescriptions are because of the zytiga. This is meant only to help you ask questions, obviously, and not to suggest that I know all the factors that went into the cocktail to treat our particular case. And for us, Dr. Myers considered Xtandi only when he thought (briefly) that zytiga had begun to fail. But that turned out to be a drug interaction so xtandi came off the table. Zytiga is working fine. (The lesson there is don't let any other dr. prescribe anything without myers' approval after you start with him, even if it seems like nothing.)

As for your appt, you should call and ask for confirmation on your date/time. It isn't always easy to get through to them. Leave messages until you do.

Best!

 
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