Slowly Rising PSA and Chromogranin-A

[4luvofrob]

I apologize if this is more info than you need/want....This is an attempt to provide you with a brief outline of Rob's PC history, so that you might give me your advice as to his present situation....I felt we needed a second opinion...and I could not think of any better place to go.

12/2011 ~ PC diagnosed ~ PSA 6.48

3/2012 ~ Robotic Prostatectomy ~ PC in Seminal Vesicles and

Lymph Node ~ PSA 2.42, Gleason 4 + 5 = 9

Started Eligard and PSA declined rapidly

6/2012 ~

Started Avodart, per Dr. Snuffy Myers

8/2012 ~ Sand Lake Imaging in Orlando, FL, per Dr. Myers

9/2012-11/2012 DART Radiation at Datolli Center in Sarasota, FL

Pathological Diagnosis, per Dr. Dattoli ~ T3, N1, Mx

PSA as of 11/19/2012 ~ .029/.033 (3rd Generation PSA Assay)

10/2014 ~ started Firmagon, Avodart & Zytiga + Prednisone...and Leukine & Pharmanac to boost immune system which Dr. Myers said had been greatly damaged by heavy doses of radiation at Datolli...Rob’s immune system markers steadily increased!

7/2015 ~ PSA down to 0.015 (all time low!) following addition of Estrogen Patch in June 2015

11/2015 ~ PSA back up to 0.024

5/2016 ~ Severe Shingles ~ PSA went up from 0.023 to 0.044

12/2016 ~ PSA back down to 0.021 and bounced around til ....

5/2017 ~ PSA 0.035

6/2017 ~ Guardant Test, per Dr. Myers (Did not reveal anything.)

7/2017 ~ per phone consult with Dr. Myers: Bone Scan showed no new metastases;

Alkaline Phosphates trending upward could indicate that PC may be getting

ready to move into the bones......(Alk Ph’s up to 77 from mid 50’s in April,

2017.).

DR. MYERS RETIRED. ROB SWITCHED TO A PC DOCTOR AT MEDSTAR,

GEORGETOWN HOSPITAL (one recommended by Dr. Meyers)

9/2017 ~ First met with new/present doctor ~ She said that she would continue Dr. Myers’ protocol.

12/2017 ~ Doctor took Rob off Leukine

1/2018 ~ WBC Count dropped to 4.3, from 9.1 in December, 2017.

3/2018 ~ Alkaline Phosphates up to 96; while PSA up, but still low (0.2)

Asked doctor to run Chromogranin-A (per Nalakrats counsel.)

4/2018 ~ WBC down to 4.0

Asked Dr. to check the markers for Rob’s immune system

6/2018 ~ Numbers came back similar to what they were

when Dr. Myers put Rob on Leukine.).

We wanted Rob to go back on Leukine...Dr. wanted to rerun the blood test and if it came back the same, have Rob go to an infectious disease doctor.

7/12/2018 ~ Second blood tests for immune system confirmed the first results.

Dr. arranged for Rob to be seen by Dr. Bellanti, an immunologist...

Met with Dr. Bellanti who talked with us at length, reviewed Rob’s PC history, researched Leukine and PC and ordered more blood work.

8/30/2018 ~ Met with Dr. who had conferred with Dr. Bellanti and agreed to return to daily injections of Leukine.

9/10/2018 ~ Restarted Leukine! His immune system markers have gone back up

to a not real high, but normal range. :)!

Since April, 2018 Rob’s PSA numbers have been bouncing, while slowly rising:

0.2 in April, 0.450 in June, 0.540 in Aug, 0,396 in Oct, 0.492 in November....

and his Chromogranin-A has done similarly: 143 in April, 177 in May, 204 in June, 207 in July, 177 in Aug.2, 203 in Oct, 164 in Nov.

He is scheduled for an Aximun Pet Scan next Thursday....

I recently asked Dr. in an email what she made of the PSA and Chromogranin numbers....

She said that I was stressing over it too much and we would talk about it at our

next visit in December....

SO, I AM ASKING....what do you all make of what is going on with Rob ( I understand that rising Chromogranin numbers with low PSA can be indicative of neuroendocrine PC and Dr. agreed)....do you think that the Aximun scan is still advisable since his PSA is thankfully, still below 1 (it was ordered because I pointed out that I had read that the scans he was having were pretty useless until his PSA was much higher)...just want to catch anything as early as possible.....Just want to do the very best for Rob!!! He is my hero...he has not complained one time, since this insidious disease was discovered in his body. Thank you to all who take the time to read through all this and respond. And may God bless and care for you and your families.

[cesanon]

1. Pharmanac, was it a specific Dr. Myers prescription or one he just consented to?

2. What is the history of his car T cell levels?

3. Are you currently satisfied with your Dr. Myers replacement?

4. Are you satisfied that Dr. Bellanti, the immunologist has a good handle on the immune system issues?

5. 2.0 psa is best for a scan. Consider using Dr. Almeida in Arizona for your scans. He will be careful about not doing it too early. He does lots of Prostate Cancer scanning. He will write his own order, then personally review the results with you. Though he will probably attempt to switch you to his more costly carbon acetate scan.

6. My history is somewhat similar to yours.

[4luvofrob in reply to cesanon]

Thanks so much for your prompt reply, Cesanon!

In answer to your questions/comments....

1) Dr. Meyers ordered the Pharmanac...not by prescription...we ordered it from a distributor online...

2) I'm sorry, but I do not what car T levels are?

3) We like the Dr. personally...but she is pretty much "by the book"...she told us up front

that she can think out of box, but does not operate out of the box....

4) We really liked Dr. Bellanti and yes, felt that he was very knowledge about immune

system issues ... He teaches at Georgetown...he did not know very much about Leukine

but spent a good deal of time researching it...

5) We live in northern VA...Arizona is out of the question for us...I have considered seeking

a phone consult with Dr. Scholz in California....have also considered going to Johns Hopkins in Baltimore...we saw a doctor there, before staring with the present dr....but he

said that Rob should find someone closer who could keep a close watch on him....

Traveling any distance would be very difficult for us...

Again, thank you so very, very much for taking the time to reply. b

[cesanon in reply to 4luvofrob]

Oops

I meant cb4 T cell levels.

I am pretty certain you should be interested in those levels.

What measures of immune system performance or status are important to you. Which do you think are important given your Dattoli Institute radiation treatment history?

[4luvofrob in reply to cesanon]

Sorry, Cesanon....just noticed that my response re: the immune system markers we are following did not post. They are CD3, CD4, CD8, CD19 and CD15/56.

[cesanon in reply to 4luvofrob]

"They are CD3, CD4, CD8, CD19 and CD15/56"

1. How far out of range are each of them?

2. Mostly it is my cd4 that is running out of range. It was down to 150, but Myers put me on pepcid and that pushed it up to 200 (still not so good). I thought most of the others are correctable, but the cd4 you get only a fixed supply of them.

3. What particularly is the Pharmanac intended to fix?

4. My understanding of the Dattoli radiation problem was that it was the cd4s were getting killied as they flowed through a lymph node that was being irradiated over 40 some treatments. What is your understanding of how it may have occurred?

5. What recommendations do you have, or have heard of to repair the damage.

6. Have you, or are you planning to take the Shingrex vaccine?

[cesanon in reply to 4luvofrob]

I think you always need a nearby oncologist.

You can't practice out of the box at a large institution.

But in the greater scheme of things a 1 day trip by plane isn't that expensive twice a year.

I did it with Myers. When people told me it was too expensive. My response was I have spent more on plumbers. Compared to what most people pay for car and home insurance, this is just another form of insurance for something ostensibly more valuable.

[4luvofrob in reply to cesanon]

I totally understand and appreciate what you are saying...thanks!!!!

[Hidden]

At what level are the other liver enzymes: ALT, AST? If you are suspecting Neuroendocrine PCa, keep in mind that it doesn't make PSA.

Also, I would want to do imaging for potential visceral mets such liver and lungs. Neuroendocrine PCa tends to go to the organs and soft tissue. Something to discuss with the doctor.

[4luvofrob in reply to Hidden]

Hi Gregg...thanks also to you...you fellows are always so awesome to help!!!

Rob's most recent AST is 7 units/L and the Alt is 16 units/L...I was not recording these

earlier...so this is all I have at present....I was under the impression that BUN, Albumin and Creatine Cl and A/G ratio were the markers to watch for liver and kidneys....What would be the appropriate type of imaging for uncovering the visceral mets in lung and liver that you mentioned? Many thanks!!!

[Hidden in reply to 4luvofrob]

I just read that blood tests are not useful for determining liver mets. They can usually be seen on a CT scan.

[tango65]

With a PSA of 0.5 perhaps it will be better to get in a clinical trial for a PSMA based PET/CT (Ga68 PSMA or 18F DCFPyl). There are trials in Baltimore. NYC and in Bethesda at NIH:

clinicaltrials.gov/ct2/resu...

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/resu...

[4luvofrob in reply to tango65]

Thanks, Tango....Baltimore and Bethesda are not that far...so I will check into these....

[4luvofrob]

Thanks, so much...Nalakrats...Honestly, I was rather hoping that maybe things did not look so dire since the Chromogranin seems to be hoveringg...and wondering about the fact that the PSA has gone up, though not dramatically, at the same time? Hoping that there was a chance it may not be neuroendocrine.....

[Tall_Allen]

There are a number of neuroendocrine markers you should be looking at, other than Chromogranin A (neuron-specific enolase, synaptophysin, CD56...).

I think with N1, you should qualify for Provenge. Leukine is a poor man's Provenge.

What would you do differently based on the results of a PET scan?

[4luvofrob in reply to Tall_Allen]

Thanks, Tall Allen...it is good to hear from you. I do not know how the results of Aximun, or any other scan, would affect Rob's treatment...I just felt that we should be ready to act if need be...When I learned from a video by Dr. Mark Scholz that the CT and Bone Scans that we were doing are basically worthless at Rob's level of PSA, I brought it up with the Dr. and mentioned the Aximun and especially, the PSMA Scans as being more sensitive at low levels of PSA. That is why she ordered the Aximun...she said that the PSMA scan is not available in the US except in a few trials. I know that with Rob's PSA at basically .5, it is not likely that anything would show with the Aximun scan and that maybe we shouldn't even be doing it....though I feel that asking the Dr. to cancel it risks an aggravation that I, and

especially Rob, would rather avoid, since I feel she ordered it mainly to placate me.

May I ask what you would do?

[Tall_Allen in reply to 4luvofrob]

When you say "I just felt that we should be ready to act if need be" I don't understand what the scan can possibly tell you that would cause you to take some action or another. I think it's worth thinking about.

I would consider switching to dexamethasone instead of prednisone to keep Zytiga working. Since he has rising PSA while on ADT, I might qualify for Erleada when you are ready to give up on Zytiga. Consider Provenge.

[tallguy2 in reply to 4luvofrob]

I have a PSA of 0.1, with previously diagnosed mets in lymph nodes and a vertebrae. A second PET with Axumin (with PSA still =0.1) provided my urologic oncologist something to potentially target with radiation treatment. It is a very sensitive test, albeit expensive. So what I am saying is the PET with Axumin may provide you with actionable information.

[4luvofrob in reply to tallguy2]

Thanks, Tallguy2....You have very much helped with my decision as to whether to

go on with the Aximun scan...and given some encouragement,,,,I hope that things stay small and easily managed for you...as well as, for my Rob. Blessings, b

[tallguy2 in reply to 4luvofrob]

Thanks, and good luck to you.

[4luvofrob in reply to tallguy2]

Hi, again, Tallguy2...I woke up thinking about what you said...Did you have to pay out of pocket for the Aximun scan...Our doctor said that GT knew the proper code to put in for Medicare to cover it....

[tallguy2 in reply to 4luvofrob]

No, I did not. My group health insurance plan paid every dime, both times.

[I understand that some hospitals that are new to Axumin charge the patient up-front for the Axumin and then reimburse when the insurance comes through.]

[4luvofrob in reply to tallguy2]

Thanks, once again!!! That's helpful...I think we should be good.....b

[cesanon]

"His immune system markers have gone back up"

What are the immune system markers you are tracking?

[4luvofrob]

Good Morning and thanks, again...I took a break last night, because I have rather bad sleep issues and knew that if I continued, it would be a bad night. I did not fully follow your comments re: a Checkpoint inhibitor, T cell Receptor, and the brake....I would like to share what I am hearing from you and others with Rob's Dr.

But, I may be quite wrong, I believe that she does not fully appreciate my input....

she is very nice about it...it is just a feeling I have. In truth, my understanding is so

limited that I do not present things well, so I can understand her perhaps feeling that I am more frustrating than helpful with what I offer. That being said...I feel that a doctor, especially one dealing with something as serious as advanced prostate cancer, should be willing to discuss any and all possibilities. Snuffy always was and seemed to appreciate what I brought forth. I have been feeling for some time that we needed a "second opinion"...I have thought of going to Johns Hopkins but it is very difficult for us to travel any distance and so, I have also thought about seeking a phone consult with Dr. Mark Scholz in Marina Del Ray, California....but thought I would reach out to you fellows first...since honestly, it seems that you know as much and more than many doctors. BTW, one thing that I failed to mention and I don't know if it has any bearing on things, but Rob's Alkaline Phosphates are down to 62.

Blessings, continue taking very good care!

[4luvofrob]

Thanks for further explanation of the T cells and Checkpoint inhibitors...I think that I pretty well get it....So do wish that Snuffy were still available, for consult, if nothing else!

We are in Northern VA and a 6+ hour drive from Charlotte + time for stops that we would have to make ... flying might be easier in a way...but with Rob's limited mobility, a pretty big challenge! (His legs are pretty weak and he has had some falls, mostly from stumbling...though he does go to the gym and rides an exercise bike, usually 5 out of 7 days/week.) I know that there are some good PC doctors in Charlotte. The doctor Rob is seeing was on Snuffy's list of recommendations, though not at the top.

I am so very thankful for the help and advice I have received from you and the others....You men are just awesome....but over the almost seven years, it seems that things have gotten even more complicated and I feel very inadequate in trying to keep up and know what to do. Quite honestly, I don't try to research as I first did other than try to follow what is being said on this site...and that is really pretty overwhelming for me.

I continually pray for the Lord's mercy for Rob and guidance for myself and Rob 's doctor. And I will try to make the best decisions I can for Rob.

At this point, I am wondering if I should ask the dr. to cancel the Aximun scan scheduled for Thursday or just go along with it to keep from possibly aggravating her.

[j-o-h-n]

God Bless You... you're quite an advocate for Rob. I know how you feel about dealing with your doctor, sometimes we get intimidated by them. They are NOT gods...Just keep telling yourself that and don't feel guilty if you think you're offending them. I have two words for doctors who think they're the cat's pajamas, but I won't mention them here. It's Rob's life you must be concerned about, not some conceited doctor who can't handle criticism or suggestions. What would she do if she was advocating for her Dad or any other member of her family? So "Sic 'em"

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/25/2018 4:52 PM EST

[4luvofrob in reply to j-o-h-n]

Thanks for your understanding an encouragement, John...in defense of Rob's Dr., I do not see her as conceited... but very low key and not as aggressive in her approach as we were

used to with Snuffy. But I very much appreciate your kind support!!!! Take good care, b