Still around, but a new development/Jevtana questions

Hi Gunner, good update. Some wins and some issues. I wish you well with the next round of chemo. Hopefully it zaps things right and you can get some more control of this thing. Good luck and take care. -JR

---

CaliJR
Age 51. PSA 7.1-PSA Free=5% 9/15: PCa G9 (4+5)
Prolaris Score=3.6 (Consistent w High Risk PCa) 18 Mnths Casodex & Lupron started Dec 2015
HDR Brachy@UCLA 2/29/16 & 3/1/16 Zometa I.V. 3/8 & 9/7
IMRT: 28 Fractions Completed 5/5/2016
Taxotere Chemo Ended 8/7/16

GERD Forum: Nissen Fundoplication Surgery 7/2015
Chronic Pain Forum: Meralgia Paresthetica

Gunner,
It's so good to hear from you. Not the best way to start the year, but hopefully it will be a very good year for you post chemo, and I am sending out many good vibes for minimal SEs.
Best to you in 2017!
Beth

---

DH 52@dx 11/2010
PSA:1983 G 4+5=9 extensive bone mets and lymph nodes
Docetaxel, Zytiga 2012 Smarium, Xtandi 2013 xofigo 2014
Cabazitaxel, Zytiga rerun
Ongoing:xgeva + Lupron
RT sacrum X 10
PSA 1/15 100
2/15 liver mets
DRibbles trial 3/15 PSA:259
6/15:Psa 900
docetaxil PSA 7/15:1054 9/15:921;12/15:1008 retry xtandi
1/16:665 3/16:1316 ascites Start mitoxantrone 8/16:792 10/16:590 12/16:532

Hi Gunner34,

My thoughts are with you! You have certainly been aggressive in your treatment plan.

I was wondering if you would mind answering some questions. BTW, my husband has similar stats.

1) Do you consider yourself castrate resistant?
2) Have you checked into any trials like Prostvac or ARN 509?
3) How did you decide to do the proton therapy?
4) Your mets are surprising to me based on your PSA. Is there any discussion of this being small cell?

Best wishes to you as your go through chemo!!

---

Husband (age 59) dx: 3-2015. PSA: 11.4. G9, 12 of 12 cores with 60% to 80%, SV+, LN+, Bone scan clean
4-15 through 5-15: Casodex
5-15 to 9-15: 6 sessions of Docetaxel, 9-15 PSA: 8.4
10-15: Restarted Casodex, then added Lupron
10-15 to 12-15: 44 sessions of RT
PSA 1/16: .9, PSA 4/16: .6, PSA 7/16: .27, PSA 10/16: .46
Supplements: Vitamin D, Curcumin, Resveratrol, Ginger, Green Tea

Thanks for the update Gunner. I wish you the very best of results as you start the chemo.
Michael

Thanks Beth. All the best to you and Gary as well.

Andrew & Michael, good to see you on the board as well.

Allen, yes meditation has worked for me. In fact, I have learned to get so relaxed that they actually asked me to pick up my breathing during my last MRI. But I'm almost 6'2" (or was, lol) and well over 225 pounds. When they pull you into the tube and your arms and shoulders actually move up to fit into the tube it gets a little rough. My last MRI was just over an hour - in and out, with and without contrast. I usually try to put myself on a beach in Maui walking with my wife, listening to the ocean and feeling the sand and water with my feet. But this last time, I just couldn't get there until they removed me and found a bigger machine for me. I had to start over and wait to begin but it got me through.

Peanut - happy to answer any questions :
1) Castrate Resistant? I guess so. My PSA started creeping up inearly 2016 while still on Lupron and Casodex.
2) Trials - I'm really not interested in trials right now. I have several existing options for my current and future treatments. When these options have been tried and/or expired, then I may consider alternatives.
3) Proton Therapy - I decided with my doctors to try the proton radiation because I had already had a significant dose of radiation to my entire pubic bone area and surrounding tissue to address the positive lymph nodes that were apparent after my surgery. The proton therapy was a way to hit only the bone again without damaging surrounding sensitive areas.
4) low PSA & small cell - my PSA has always been low. I think the highest PSA I ever had was 12.4 at diagnosis. With significant mets and lymph node involvement this was a low #. Small cell was suspected but but biopsies didn't confirm. Because of the low PSA, after I had 3 rounds of Taxotere, which resolved my bone mets, I did another series of Chemo with Etoposide and Cisplatin (very rough). This was just prior to my RRP to remove the prostate and 18 lymph nodes.
I think my PSA would rise if I didn't just start with Lupron after a very short break. In addition, the C-11 Choline Scan can usually detect mets before traditional MRI's. Because of my history, PSA has not meant much for my continued care. It's just low. If it's zero, that's great but any rise at all seems to be a cause for concern even at very, very, low readings. So, with my 5+4 diagnosis, we continue to watch for more aggresssive variations like small cell but so far so good.
So, on to Jevtana later this week to knock this down again!

---

Dx Jan 2013 age 46 PSA 12.4
14/14 cores positive T4 N1 M1b G9= 5+4
Firmagon, Taxotere - (6/13)
Etoposide/Cisplatin - (10/13)
PSA's 9/13 0.18, 12/13 0.36
open RP 1/21/14 -7/18 nodes +
2014 & 2015<0.10 Lupron, Xtandi 8 Mo's
5/14 -Thymectomy
IMRT 6/14
3/16 0.06
4/16 0.16
5/16 0.10
6/16 0.18 quit Lupron
7/16 0.42
8/16 0.67 stop casodex/proton
9/16 0.57
10/16 0.53
11/16 0.35
12/16 0.38
12/16 0.48

Hi Gunner34-
I am watching and hoping for a big kick of the can far down the road for you-

grace and courage under stress

thanks for sharing
rf

---

Dx @ 62yo
2012-15: PSA 6-14, 2x neg Bx
3/16 PSA 19.4
Bx G10/8 bulky mets P+RP LN
5/9 ADT PSA 29.5
NIH trial: PROSTVAC + ADT + chemo (4 rnds)
PSA nadir .05 on 10/4
10/25: PSA .06 Scans- no bone mets, nodes shrunk
www.healingwell.com/community/default.aspx?f=35&m=3634829

Thanks and Happy New Year to you as well rockyfords!

---

Dx Jan 2013 age 46 PSA 12.4
14/14 cores positive T4 N1 M1b G9= 5+4
Firmagon, Taxotere - (6/13)
Etoposide/Cisplatin - (10/13)
PSA's 9/13 0.18, 12/13 0.36
open RP 1/21/14 -7/18 nodes +
2014 & 2015<0.10 Lupron, Xtandi 8 Mo's
5/14 -Thymectomy
IMRT 6/14
3/16 0.06
4/16 0.16
5/16 0.10
6/16 0.18 quit Lupron
7/16 0.42
8/16 0.67 stop casodex/proton
9/16 0.57
10/16 0.53
11/16 0.35
12/16 0.38
12/16 0.48

Hi Gunner,
Gary has had a LOT of chemo and no port. There is the added risk of infection. Cyclone suggested in the past warming your arms with hot pack to bring up the veins if needed. Gary hasn't really had many misses with IV, except for one inexperienced oncologist nurse. I would say if you would rather not have it..don't.
Whatever side effects you experiences with taxotere, you will likely experience the same, but maybe not as extreme. Jevtana is supposed to work better and not be as hard to tolerate, from what we were told. Gary had usual chemo crash a couple of days after, to varying degrees.
Hope you breeze through this and it helps with your bone mets/pain.
I'm curious as to whether or not xofigo or sumarian has been considered since you seem to have issues mainly with bone mets and pain?
Very best to you as you journey on.
Beth

Hello Gunner34,

I have been thinking about you this week, knowing that you were going to have your first JEVTANA chemotherapy infusion. You have my thoughts and best wishes and prayers surrounding you.

After I had chemo treatments with TAXOTERE two years ago, I experienced what they called "chemo veins" at the clinic --- sigh --- at the worst, it took 3 lab technicians seven attempts to draw my monthly labs and I went home with my arms looking like a dartboard.

From there, they now have me hold my hands under warm running water for a few minutes. This seems to "draw up" the veins. ALL of my labs are now drawn from the TOPS of my hands and it works much better for me --- you can insist upon it, if it works for you. Give it a try --- it's been a lifesaver for me for lab work.

At Mayo Clinic, they use hand warmers on the top of my hands and sometimes warmed blankets wrapped around my arms to "draw up" the veins. Again, taking the blood draws from the tops of my hands seems to work wonders.

It's important to drink water before blood draws --- this also helps "draw up" the veins. The lab technicians can always tell if I've been drinking enough water before lab draws ! I believe that physical activity also helps !

You asked about ports --- each doctor seems to have their own protocol in regard to those. I know many patients have ports inserted before a series of chemo treatments.

In my case, my oncologist felt it was best to simply do the TAXOTERE infusions through the top of my hand --- once the needle was in, the infusions were done in this way, each and every time. It seemed to work, in my case, at least.

Hoping you will do some "resting and relaxing" after your JEVTANA treatment today. You have my thoughts and unwavering loyalty and support, each and every day, Gunner34.

Handshake of support, from "one brother to another brother" ~
"Cyclone Team Fan" ~ Iowa State University

---

PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, and currently ZOLADEX
Subsequent Treatments: Chemotherapy Treatments (TAXOTERE) & now ZYTIGA
Additional Medical Consultant - Dr. Eugene KWON - Mayo Clinic
PSA Level: Consistently < 0.50, With Treatments Ongoing

Hello Gunner34,

Just a line to hope that you are doing well and rebounding after your first JEVTANA treatment, earlier this month.

I've been thinking of you and hoping that the "chemo crash" was mild and moderate ! Ahhh, the dreaded chemo crash ... seems it's almost inevitable, to some extent. Luckily, my oncologist timed my chemo treatments so that the "crash" hit during the weekends ... I also found that drinking lots of water helped me rebound much quicker.

I thought of you this past week, Gunner ... it was time for another round of scans and tests at Mayo Clinic in Rochester, Minnesota ... so, I drove up north and it got to -25 degrees one night, with wind chill factor.

This time, Dr. Kwon wanted me to do the combination MRI of the abdomen and pelvis ... good news on that front ... that MRI used to take 90 minutes inside the MRI "tunnel" ... they have found a way to shortcut the imaging process and the abdomen/pelvis MRI only took 40 minutes this time.

I also did the CHOLINE-PET scan, which you are familiar with, Gunner. This was my fourth choline scan ... that test moves quickly ... taking only about 25 minutes.

My PSA still registers in the low decimals, thanks to the series of "early chemo" treatments back in 2014, the monthly ZOLADEX shots, and my daily dose of ZYTIGA.

Dr. Kwon recommends I stay on track with the ZOLADEX injections each month with my local oncologist, and that I stay on course with ZYTIGA ... I've been on ZYTIGA now for about 18 months, and it has worked well for me.

Have been thinking of you, Gunner34, and hope you are faring well with your JEVTANA treatments. Sending my thoughts, support, & prayers your way !

Handshake, friendship, brotherhood,
"Cyclone Team Fan" ~ Iowa State University

---

PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, and currently ZOLADEX
Subsequent Treatments: Chemotherapy Treatments (TAXOTERE) & now ZYTIGA
Additional Medical Consultant - Dr. Eugene KWON - Mayo Clinic
PSA Level: Consistently < 0.50, With Treatments Ongoing

Sorry you are facing chemo again. I thought it would kill me. Still got neuropathy in hands. That was taxotere. Anyway, I have a port and rarely even notice that it is there. My veins blew out on the first round back in May. Also seemed to go faster too. I get it flushed every six weeks. Doc said leave it in for a bit longer. It is not a problem. Installed and infusion same day.

I told my Dr that I would not do another round of chemo if that is why we are keeping it. We are to discuss Friday.

Good luck.


Don