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Posted 4/20/2015 3:25 AM (GMT 0)
We just got news from another member and may be able to make it.

Looking for feedback from past conference attendees and any info we can get ahead of time.

Paul isn't convinced but I really think it could be worthwhile. The first night is his birthday too...
Posted 4/20/2015 6:47 PM (GMT 0)
I've been several times - the last time just working a booth. The first time, I found it useful to see some very famous doctors. Scholz seems to have his favorites, and I'm disappointed sometimes by the ones he doesn't invite. However, the most useful part from my POV was meeting some of the 1,000 or more patients who attend.

As far as the medical information goes, it is meant for a patient audience, and presents a good overview, but not the kind of detail I thrive upon, but I know I'm different in that regard. The downside, if there is one, is that patients may not understand what data applies to them and what doesn't. I hope it spurs attendees to taking the info as a starting point for further investigation, rather than going off half-cocked thinking they just heard THE panacea.

I kind of agree with Paul that, because of his very peculiar situation, there is not likely to be much of particular relevance to him. On the other hand, I think you would both find it worthwhile to meet other patients, and it may give you both hope to hear how much medical investigation is going on.

- Allen
Posted 4/20/2015 7:02 PM (GMT 0)
Will there be
a poetry
track?
Posted 4/21/2015 12:23 AM (GMT 0)
Thanks for the input Tall Allen, I appreciate it. I would also be looking for the fine details and have a lot of questions that might fall over some patients heads.

I am at the point where I think we will be having to make some more hard decisions soon regarding treatment and was wondering if this would give us some networking opportunities so that if someone hears of something in the pipeline, or remembers Paul's case that they would give us a heads up. It might be a needle in a haystack that saves him, and I would go to the ends of the earth to find that.

I will just have to wait I suppose and see what info they post about it before we decide.
Posted 4/21/2015 12:28 AM (GMT 0)
Krissy,
Have your tried sending an em to Tony Crispino detailing Paul's situation? He's a great person and if it's possible he may be able to point you in a good direction.
Susan
Posted 4/21/2015 12:37 AM (GMT 0)
Susan,

Waiting for new labs this month and to see if more scans this month or next (can't remember). He is due now so soon as he is recovered from this hoopla he will be getting the tests.

Today at work was nuts so I didn't have any time for anything else, not even lunch.
Posted 4/21/2015 1:05 AM (GMT 0)
Kristi-

Were they able to biopsy any of the lung mets? It would help in tracking down the leading experts if we knew exactly what we are looking for an expert in. Please let me know what labs and scans show.

A man in my support group got connected with Oliver Sartor, one of the leading prostate oncologists in the US, through the "Best Doctors" program. In his case, he had a rare kind of small cell PC that Sartor had experience with. He highly recommends the program - he said the cost is very low.

www.bestdoctors.com/

- Allen
Posted 4/21/2015 1:27 AM (GMT 0)
No they had decided at that point it would require surgery and not easy at the time. The priority was starting chemo and it wouldn't change the treatment then. Not sure what will be decided now, depending on what is showing on scans to come.

Consensus at the time was the mets had seeded in his bloodstream and all the innumerable were close in size which would correspond with that. There was extensive involvement- mediastinal lymph node involvement and every lung field and space and surface including pleura and in between lobes, etc.. It was so strange.....

I need a few days to get my head and house together then its doing what it takes to figure out the teeth situation asap. Regardless of anything, that is what is needed before anything else. I think he needed a break and needed the GFMPH so that was put on backburner for a minute. He needed to live a little, and I am so glad we did that....
Posted 4/21/2015 2:21 AM (GMT 0)
Actually, different cancer types can change the chemo treatment plan markedly. I'd be curious if it were somatostatin-sensitive too. Perhaps if they can't biopsy a lung met, they could biopsy a LN met.

- Allen
Posted 4/21/2015 2:54 AM (GMT 0)
Tried a LN biopsy but didn't get a good sample they said. Wasn't tried again.

Now that the lung nodules are showing up again it may be time to revisit that. It just seemed at the time that everyone agreed it must be prostate mets given his PSA and core involvement, etc.

Honestly I wonder if they even care to find out everything- when he had his last PET scan they only injected him less than an hour before they scanned, knowing that he has poor perfusion from heart failure and poor ejection fraction, and seemed like they could have used higher resolution imaging and/or size of slicing (not sure of technical term for that).

Heck it was me who questioned his incisional hernia and the thing is HUGE, yet not mentioned even incidentally in the CT/PET reports- not one word about it. Makes me wonder what else they are missing and not much faith given they seem to read the actual reports and trust them, ignoring the pics... Took me over a month to get them reviewed by one of the surgeons. I do trust that surgeon and he told Paul its way too invasive of surgery to even try unless its emergent (when of course by then it will probably kill him!).

I just feel that our hands have been tied so many times in so many ways almost since day one. I sort of have given up for a moment.... maybe just taking a deep breath... But I the stress of the constant push and pull to get any info or treatment is just overwhelming at times and it has been a nice break. I do know the next battle is about to begin soon, though.

Sometimes I think I need to find another job, different insurance but then we start at square one again.... and will we actually gain anything or will we lose a lot more? Sword of Damocles......
Posted 4/21/2015 3:20 AM (GMT 0)
So sorry to read about what you are going through.

I have attended that conference twice. I found it extremely helpful for me.

I gained a LOT of insight into the latest drugs/txs, got to see some world class doctors/experts, and met all sorts of folks sharing this friggin' disease. I was also able to ask plenty of questions.

In fact, that's how I met Dr. Kwon and heard about the C-11 Choline scan.

Little did I know at the time that it would be useful for my situation, but I knew that it was a possibility and eventually it did occur.

I also got to meet Tony, Tall Allen, and others.

Mel
Posted 4/21/2015 3:33 AM (GMT 0)
I think it sounds worse than it is. Its reality, and what it is. We make the best of it. GFMPH this past week helped immensely. Reminded us we need to live and breathe a little. And we did!! :)

So now back to the grindstone asap.

Meeting them is worth it for sure.... in itself.
Posted 4/21/2015 4:41 PM (GMT 0)
Kristi,

There are different types of prostate cancer that can only be distinguished by a biopsy. It is also necessary to determine whether it has receptors that are positive for certain activators. Perhaps the next scan can help determine a site that can be more easily biopsied.

- Allen
Posted 4/22/2015 12:42 AM (GMT 0)
Allen-

All we know is adenocarcinoma with 3s and 4s in most, some are 4+4s, and all had underlying tertiary gleason 5s at 5%..... Nothing more. When sent to Bostwick we thought they were doing other tests but none had been done.

They tried the lymph biopsy and no dice, not a good sample so no results at all.

I don't even know what to ask for and I would need data to back up having a request granted for anything. Seems the only way we get anything at all, ever. They even make us choose bone scan, MRI or PET scan. Not a combo.... Really strange.

Do you think knowing he has the BRCA genes makes any difference in any treatment plan? They seem to think it wont and unless we have a study or two to show his care could change because of this they won't pay. I would like it done not only for him, but also considering he has a brother and 6 nieces just reaching child bearing ages.

They don't want him to have more chemo and are afraid of a future reaction. Nobody has mentioned anything about mets elsewhere-- seems everything is suspect. Not even rads for any focus. So they run us in circles saying its not contained in prostate but I have not seen one iota of solid proof of anything but prostate involvement. Seriously- what if all this time he was able to cure this with surgery? I really don't know anymore.

Paul will have his PSA done tomorrow I think....

My action plan includes a huge to-do list I am now working on..... Appeal decisions, ask for clarification, more tests, try to find funding, get things covered, etc.... And suddenly this week they want to yank home palliative care from us.... Again less support when I need it most.
Posted 4/22/2015 5:53 AM (GMT 0)

kukukajoo said...
When sent to Bostwick we thought they were doing other tests but none had been done.


I'm no expert, but I think some special staining is required. In reading about one type of rare cancer, it says, "Immunohistochemistry can be useful in identifying this malignancy, with CD-56 staining positive in 92% of cases and synaptophysin positive in 85% of cases, which is helpful in discriminating this tumor from poorly differentiated acinar adenocarcinoma (Gleason 5)" Perhaps the pathologist has to suspect what he's looking for in order to find it.

kukukajoo said...
They even make us choose bone scan, MRI or PET scan. Not a combo.... Really strange.


The PET scan comes with a CT scan. (The new models come with MRI instead.) That is the best indicator available. I know I asked before, but I forgot your answer - did you look into Dr. Schuster's FACBC PET at Emory? If that wasn't possible, you might be able to get him a free PET at NIH, and they cover all travel expenses too. This is the one Sonny and Wampuscats had - he might be eligible for Arm 3. Contact:

18F-DCFBC PET/CT in Prostate Cancer

If that doesn't work out, you can try this one at Johns Hopkins (act fast - it closes in June):

18F-DCFPyL, a PSMA-based PET Radiotracer, in Patients With Advanced Prostate Cancer

kukukajoo said...
Do you think knowing he has the BRCA genes makes any difference in any treatment plan?


Do you have reason to believe he might? It's a relatively rare occurrence, so unless he has a family history that clearly points in that direction (e.g., mother dying young of breast cancer, relatives with multiple cancers), I don't think it's worth the outlay of $3000 or so (insurance seldom covers this for anybody). If you do have reason to believe he might and want to come up with the money, there are clinical trials for PARP1 inhibitors, like olaparib, that he might qualify for.

My hunch is that it's much more likely that his cancer is positive for the growth hormone receptor. Special Lady had a doctor's name in Germany who could do the relatively inexpensive test, but there must be labs in the US that can do it, or possibly even the lab at Emory. If so, he may respond to therapy with pasireotide,octreotide,lanreotide, or Somavert.

kukukajoo said...
but I have not seen one iota of solid proof of anything but prostate involvement.


A biopsy would be ideal, but lacking that, there is something else that can be done. It's called "CellSearch" and it counts the number of circulating tumor cells in the bloodstream. When there are more than 5, it's prognostic for systemic disease (although there can be false negatives). Here's a link for the test that has a number you can call, and you can ask if insurance covers it:

CellSearch® Circulating Tumor Cell Test

- Allen
Posted 4/22/2015 6:41 AM (GMT 0)
Hi everyone.
I highly recommend the PCRI event. I'll be there again this year. This will be my 6th year. Kukukajoo convince him. Or tell him to call me (Moderators do not moderate. I know what I'm getting into)

702-917-7779.

This program is industry leading live opportunities for PCa survivors.
Posted 4/22/2015 3:34 PM (GMT 0)
Allen, the German pathologist you are referring to may be Helmut Bonkhoff at Pathology Laboratories in Berlin. He is a prostate specialist pathologist. He runs several different tests on the slides and can identify certain strains that respond better to certain treatments. His website explains the different tests. Bostwick started some similar tests a few years ago, also explained on his website.

As I recollect Zufus had his slides run by Bonkhoff several years ago and actually posted them, I just don't remember where.
Posted 4/22/2015 5:41 PM (GMT 0)
Special Lady sent me his stuff, which I can pass on to kukukajoo. However, I don't think it's necessary to send to Berlin to get it. I've read US research studies that used such assays. I presume that if one emails Emory's pathology Dept, one can find out if they do the test, and they would probably know who does if they don't.
Posted 4/23/2015 2:08 AM (GMT 0)
Bonkhoff is the one I translated this email into German to him and got a response in perfect English! I wasn't thinking at the time that a lot of medical stuff around the world is in English (research, etc). He said last June second opinion of biopsy would be $500 and each marker $100. I have sent an email tonight asking if prices still valid, which markers are avail, and any hematology labs.

I will email Dr Kucuk at Emory as he will have the answers I am sure. I am not sure he got Paul's last scans or not. We went for a consult with him and he said he would recommend DEXA, and a few other tests, meds for bone mets, etc. then never heard from him again- no after visit summary, nothing that I know of sent to his regular oncologist.

I started a blog with my ramblings a while ago and trying to post to it regularly, but not close to successful yet. I will post a link once I get better in the habit.
Posted 4/23/2015 3:24 AM (GMT 0)
Allen- Dr Schuster was contacted early on and said not avail for primary staging and probably wouldn't change his therapy at that point. He put us in touch with Dr Kucuk, whom Paul saw recently.

Will look back into this.

Also that bestdoctors.com looks great but apparently a supplement to medical insurance through employers. Not offered at my company.

Still looking into things and can already see how my weekend will be spent.
Posted 4/23/2015 12:23 PM (GMT 0)
Dr Bonkhoff sent a curt reply:

"Prognostic and predictive markers can be done only at the request of the urologist or oncologist.
Many markers available in the past are no more available, except neuroendocrine markers."

And told us he does no hematology labs and to go see a urologist or oncologist!

Someone got per in his cherrios I suspect!!
Posted 4/23/2015 4:30 PM (GMT 0)
F him. Check at Emory - good to check neuroendocrine markers. But this is all premature until you can get a biopsy.
Posted 4/23/2015 5:03 PM (GMT 0)
Have emails out and waiting for replies now. We'll see...

Tony I've asked Paul to call. May Be this weekend as he's still exhausted from trip.
Posted 4/26/2015 3:29 AM (GMT 0)
Just got this response from Bonkhoff:

"The prices quoted last year are still valid. ($500 for pathology, and $100 for one marker).

The markers currently available are AMACR, the androgen receptor, basal cell (p63, CK5/6) and neuroendocrine (chromogranin A, synaptophysin) markers. The other prognostic and predictive markers previously available for study are perished and no more available.

So if you need a more complete marker profile, please address to the Bostwick Laboratories, Rubin Lab or others in the US"

Here is the link to Rubin labs:

http://rubinlab.med.cornell.edu/

Some interesting info on there I will be looking up, as well as the tests that Bonkhoff mentions. Right now bad migraine limiting what I am doing.
Posted 4/26/2015 12:55 PM (GMT 0)
Just got this in the mail yesterday and forwarded to kukukajoo, wampuscat, Worry Wart and Compiler

PCRI is proud to announce that registration is now open for the 2015 Prostate Cancer Conference! The conference provides a weekend of educational sessions on the latest treatment options, lifestyle, and quality of life issues presented by world-renowned physicians and researchers. The keynote sessions will be moderated by Dr. Mark Moyad, a leader in the fight against prostate cancer, making it personal and relevant to the patients in the audience.

Here are some of our speakers & topics being presented at this year’s conference:


• Zytiga & Xtandi with Tomasz Beer, MD

• Immune Therapy with Charles Drake, MD

• Seed Implant Radiation with Peter Grimm, DO

• Active Surveillance with Mathew Cooperberg, MD

• Sexual Side Effects with John Mulhall, MD

• Hormone Resistance with William Oh, MD

In addition, there are opportunities throughout the 3-day event to participate in Q&A’s with the faculty, hear in-depth presentations targeted towards specific treatment options, attend support groups with other patients, and meet with various organizations and companies who provide services and products for prostate cancer patients.


Register now until June 30 and receive the special early bird price of only $60!
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