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Posted 1/2/2017 4:25 AM (GMT 0)
I try to check in here on many of you but don't seem to spend much time here lately. It's great to see many good reports amid some struggles. I had some excellent correspondence with another warrior over the last 3+ years that lost his battle after 12 years. He had a great story and documented it well in his blog (cycleforlife.ca).

I think I last posted about my proton treatments that I had late summer 2016. My PSA dropped for a couple monthly readings after that but I was noticing some increased pain in my pubic bones as well as my shoulders and even my ribs. In early December, my PSA was still very low at 0.48** but my C-11Choline scan confirmed that I've got some issues again in my bones to deal with. The newest spots were my ribs on both sides, as well as recurrence in my pubic bones and sternum. I had to leave a scan early due to severe anxiety and the need to urinate so we didn't get to examine my shoulders, however, I suspect that's also an area that needs attention (due to bone pain there also). So, not great news but I guess I've been expecting it for a long time and have been blessed to have a 2&1/2 year stretch with clean scans.

The anxiety inside the scanner was new for me. I have had dozens of scans before and they've never been a problem for me. But, the last C-11 and the followup MRI were very difficult. The anxiety started for me during my C-11scan. I started the next MRI ( which was clear for liver mets, yay!) and panicked. They stopped right away and prepared another machine for me which was bigger on the inside and more..... comfortable? I'm surprised they wouldn't schedule the bigger machine anyway, I'm not tiny. Anyway, got it done.

So....I start chemotherapy this first week of 2017. I got a 3 month Lupron shot in early December. Seems like I just finished my last round of etoposide/cisplatin but that was just over 3 years ago. The plan, for now, is to get ahead of this crap again by 6-8 treatments of Jevtana (cabazitaxel). So, at least it's during the cold winter this time instead of summertime. And although I felt pretty wrecked from my last bout with chemo, it was effective and I responded well. We are hoping I get that good response again.

** I corrected this after looking at my PSA history. I incorrectly listed 0.67 first. My signature is correct now too.
Posted 1/2/2017 5:59 AM (GMT 0)
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
Posted 1/2/2017 6:14 AM (GMT 0)
CaliJr - thanks.
Looks like you just finished chemo in early August. Hope you are getting past any major side effects by now.
Posted 1/2/2017 7:15 AM (GMT 0)
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
Posted 1/2/2017 2:51 PM (GMT 0)
Good to hear from you.

Sorry you have to do the chemo.

Hang in there,
Andrew
Posted 1/2/2017 7:15 PM (GMT 0)
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!!
Posted 1/2/2017 7:41 PM (GMT 0)
I hope you get a great response from the Jevtana. Those full-body scans are nerve-wracking. I meditate in the "tube" but I'm sure a tranquilizer works even better.
Posted 1/2/2017 8:20 PM (GMT 0)
Thanks for the update Gunner. I wish you the very best of results as you start the chemo.
Michael
Posted 1/2/2017 9:10 PM (GMT 0)
Will be praying for you. You have come a long way so stay positive!
Posted 1/2/2017 9:22 PM (GMT 0)
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!
Posted 1/2/2017 10:20 PM (GMT 0)


Hello Gunner34,

I've been thinking about you, and I appreciate your update.

You've always been a loyal brother of mine, here on the forum. Just know that you have my unwavering loyalty and support, every step of the way, as you start your new series of chemo treatments. I've been through a series of chemo treatments, so you have my support, all the way through.

I, like you, have done the PET-CHOLINE scans at Mayo Clinic and also the detailed MRIs there ... yes, sometimes I get restless inside the "tunnels" during the scans ... after about 20 minutes, you just want to crawl out of those "tunnels" and see the real light of day, once again.

I'm here to support you, in any way that you wish or need, my friend. My E-mail is posted by clicking on it.

I appreciate your outreach and loyalty on the forum. I have been thinking of you and hope that your new series of treatments start kicking in and showing their mighty powers, Gunner34.

Handshake of support, from "one brother to another brother" ~
"Cyclone Team Fan" ~ Iowa State University
Posted 1/2/2017 10:47 PM (GMT 0)
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
Posted 1/2/2017 10:50 PM (GMT 0)
Thanks Cyclone.
I'm hoping I have an easy go if it this time around, like you have reported during your journey.
All the best to you as well.
Posted 1/2/2017 10:51 PM (GMT 0)
Thanks and Happy New Year to you as well rockyfords!
Posted 1/4/2017 5:31 AM (GMT 0)
For some of you guys who've had Jevtana, I've got a couple questions:
1) any major side effects to watch out for?
2). Port or no port? I've had chemo before (3 years ago) and veins in arms still haven't fully recovered. I also have had a heart attack (13 years ago) so I'm a bit nervous about pumping chemo directly through my heart. I'm fairly fit and very strong (relative to this cancer trip) but still uneasy about a port fir some reason.
Thanks!
Posted 1/5/2017 6:57 AM (GMT 0)
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
Posted 1/6/2017 3:02 AM (GMT 0)
Hi Beth
I had my first Jevtana infusion today and so far so good. Veins were finally pierced after 3rd try. We had to warm up the arm twice but finally we had to get the vein specialist (a really god nurse) to get it to wor. Hopefully only 5 more to go.
Xofigo is an option for me but Jevtana will likely help my bone mets just as good for now. I responded well to taxotere before, which mostly resolved my bone mets after only 3 treatments. I followed that up with etoposide and cisplatin which probably helped systemically as well although that was not really measured. We may end up trying xofigo in the future, as necessary.
Also, I am doing Jevtana without prednisone. When I had prednisone with taxotere in 2013 I gained about 25 pounds and was pretty miserable with tight joints, etc along with just carrying the extra water weight.
Posted 1/6/2017 3:21 AM (GMT 0)

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
Posted 1/6/2017 3:36 AM (GMT 0)
Hey Cyclone
Thanks for your insight. I had similar experiences with my first bouts with chemo also. Initially in 2013, they always complemented me on my prominent veins which were very easy to tap. By the end of 6-7 months, they were warming my hands and using several attempts in the back of my hand, just like they did for you. By the last treatment it was like watching an inexperienced fisherman trying to string a hook into a super twisty night crawler. Just wasn't going to happen. One time, I asked the nurse to never touch me again. The next try worked.
For this go around starting next time, I think I'll tell them that I need the most experienced person to get my IV started. Today, she found a thin vein on the underside of my forearm and got in without much effort or pain but a lot of patience. The top of my arm shows the battle scars of today's misses from the first nurse.
I'll try the warm water. And in the winter, I know it's important to drink extra water, especially where we are in Mn and Iowa. I already get plenty of exercise which is mostly rigorous walks with incline on the treadmill this time of year. I mix in some weights, walking the dog, ping pong and even an occasional ski trip when my son is racing.
Be well Cyclone.
Posted 1/15/2017 10:47 PM (GMT 0)


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
Posted 1/16/2017 6:59 PM (GMT 0)
Hi Gunner,

Gosh, I hope you knock that beast out.

FYI we're all different, as you know, however I found the Jevtana and Carboplatin a walk in the park compared to Taxotere. My brother took Etopisde and really struggled. And Cisplatin is no fun either. Since you made it through that regime I'm hoping Jevtana is easier on you.

Sending good thoughts your way.

Rick
Posted 1/16/2017 11:40 PM (GMT 0)
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
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