Prostate Cancer Metastasized to my Spine

slickjy · June 2017

2nd of 6 Xofigo Injections

Because of low white blood cell count,neutrophyls and hemoglobobin, my 2nd shot has been postponed, hopefully only for a week. Otherwise, no changes and no real side affects to the radium. PSA test and Lupron scheduled for next week as well. Hopefully, some evidence of progress will show up!

GeneRose1 · June 2017

Low White Blood Cell Count

SlickJY, It that common for one's white blood cell count to decrease like that while getting the Xofigo treatment? I wonder if there's anything that can be done to better prepare for the Xofigo; get in great shape, take supplements, etc.? Hang in there. That Xofigo is going to do the job and kill that bandit.

Max Former Hodgkins Stage 3 · June 2017

WBC

Gene,

Most chemos used against blood cancers cause the WBC count to plummet. There is a drug used to fix this: Neulasta.

Neulasta is a "colony stimulating factor," which causes the bone marrow to increase WBC production. I suppose it may be usable against PCa...most Lymphoma and Leukemia patients receive it.

Link attached,

max

http://chemocare.com/chemotherapy/drug-info/Neulasta.aspx

slickjy · June 2017

WBC, Xofigo and Rising PSA

Yes, as Max said, decreased WBC is common with Xofigo treatment. My blood is closely monitored - every week, and twice in the week before a scheduled Xofigo injection - in order to be aware of any such effect. My 2nd Xofigo injection has been delayed 2 weeks now beacuse of low and decreasing WBC and neutrophil counts. Good news, tho, as today I had CBC, and WBC is up significantly (tho still low) and ANC increased slightly as well. So right now I am scheduled for 2nd Xofigo injection on Tuesday, 6/20/17. Meantime ...... this week I had PSA tested in prep for quarterly Lupron injection (tomorrow). Bad news, as PSA is now 70.5, TRIPLE what it was 3 months ago. Up til now, for the last year my PSA has been doubling every 3 months, so this sudden surge is especially discomforting. I assume we will contiunue with Xofigo as planned, but I wonder if enzalutamide or some other "stepped up" ADT treatment can be administered in coinjunction with Xofigo??

GeneRose1 · June 2017

WBC, Xofigo, & Rising PSA

Wow, I wonder what the heck happened!? That PSA surge is pretty worrisome. Hopefully, the Lupron injection will bring it back down to a much better number and hold it there. Has Zytiga been discussed? Fortunately everything else appears to be trending well and the treatments can continue. I still believe that Xofigo is in my future; maybe not this year or the next but I expect it to be on the menu when the Lupron's ability to keep the cancer under control starts to falter. I've been working out like crazy lately, trying to lose weight and get rid of the Type 2 Diabetes that came with the Firmagon injections. I wonder if maintaining excellent physical conditon and taking supplements to build up my immune system would help counter some of the negatives (low WBC) associated with Xofigo. Hang in there. I know things are going to get better.

slickjy · June 2017

WBC, Xofigo, & Rising PSA: Update

Thanks, Gene for the well-wishes. PSA has us a bit stumped because I have been on Lupon qrtrly injections since January 2015. Anyway, decision reached last Friday was to postpone 2nd Xofigo tretatment until at least early August (because I will be out of town all of July & fear of lowering WBC again) and start on Zytiga right away (with Prednisone, of course). I am not crazy about the Zytiga/Prednisone, but I need to get the PSA down and they tell me that should do it. (I continue with Lupron, too.) .... Good luck with your exercise regimen. If you stay with it consistently, I am sure you will see results! .... I'll post update on 8/1, after my next blood lab work.

Mark58 · July 2017

Status Update

I apologize for not keeping you guys updated on my condition. I guess after 13 and a half years I have ran out of treatment options. I still get my Lupron injections and am still on Zytiga. My psa is at 264 now. Scheduled for another blood test in 2 weeks. At my last appointment my oncologist said to get things in order, and that I would not be around much longer. My cancer is in my hips, ribs and spine. I have severe fatigue issues. It appears that my activity level per day is limited. When I reach that level, I have to be recliner bound for the rest of the day. I did get to go fishing in May. My son had to help me onto his boat. All my children and grandchildren were there. What a wonderful camping/fishing trip that was!!!! They all came for Father's Day too. I had just been released from the hospital after 3 transfusions for very low hemoglobin. This is a roller coaster ride! I'm hoping to make it to see and hold our 2nd Great-granddaughter the middle of August, see the eclipse, and our 49th anniversary in November. Past that, one can only pray.

I am so thankful for the 13.5 years Vanderbilt Medical Center has given me! I feel that I have received the best treatment possible. They have a great staff!!

I apologize for this post being so negative. Hopefully, something I've written may help one of you. Live your life to it's fullest. Don't put off anything. Keep your family close and informed! I promise to write more often.

Grinder · July 2017

Respect for you, Mark. I know it's hard for us males to rely on others after we have been their stronghold and fortress for so long. Now it is time for your friends and family to show you how much they love you. I greatly value my relationships with family, friends, and in Christ. You can't buy that with money, and better a year with the people who genuinely love you than a decade with wicked people who are using you. I think God kept me from being wealthy so I could have what truly makes a man wealthy. (Although my indolence may have had something to do with it). Have a GREAT year.

GeneRose1 · July 2017

Provenge or other immunotherapy treatments?

Mark, Have you tried any of the new immunotherepy treatments that have come out recently? I know you're tired and hurting but you're not done until they pull the sheet over your head. You should keep fighting and never let up on this bandit in your body. There's a lot coming out and I think you should consider trying another team, such as MD Anderson, University of North Carolina Lineburger Cancer Center (they were featured on 60 Minutes recently for their innovative use of Watson, the super computer, to find solutions for cancer) or others to get a fresh perspective on this. I'm pretty sure your kids can handle the logistics of getting you where you need to be. Hang tough. You inspire and strengthen us all. If Jimmy Carter, who was at death's door two months ago and is now hugging everyone on his flight and building houses for the needy, can do it, you can do it ten times over. Best/Gene

VascodaGama · July 2017

What a wonderful camping/fishing trip that was!!!!

Mark,

I appreciate your wishes in updating the folks here. I think you did well in finding the strength to get to that wonderful family trip and now you will need to repeat it for the upcoming eclipse. There will be almost !00 Years since the last USA's solar eclipse occurred. Later in November it will be yours 49th anniversary and still later you will have some more occasions to commemorate. Your oncologist may be wrong in his predictions.

I wonder if you have discussed with him about the LU-177 trial. So far the outcomes have been good. I sincerely hope for your next update with your informing us about good news. You are wonderful my friend.

VG

GeneRose1 · July 2017

Mark, Check This Out

Mark, Please check out this link on a new treatment that works kinda, sorta, like Zytiga. Have those wonderful children of your's figure out the clinical trial and logistics of getting you there & back for this. The world is a much better place with you in it and I hope you don't give up the fight and keep punching. Here's the link:

https://prostatecancernewstoday.com/2017/06/30/galeterone-shows-promise-as-a-next-generation-prostate-cancer-drugs/?utm_source=Prostate+Cancer&utm_campaign=9ecc05196a-RSS_MONDAY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_a6d9c27ca8-9ecc05196a-72180173

slickjy · August 2017

Zytiga & 2nd Xofigo Injection

Best news is that after 1 month on Zytiga, PSA has decreased from 70 to 51 ..... first decrease in almot 2 years! Staying on daily Zytiga, hope to see continued decreases in PSA.

Finally, after several delays since 1st Xofigo injection on May 9th, I was able to get #2 this week, on 8/22. Delays due primarily to low WBC and ANC counts, but those have come back. I am told that the fact that injections are more than 4 weeks apart will not make a difference. Hopefully thast is the case, and Xofigo is attacking the skeletal lesions as expected. Meantime, we will monitor weekly and hopefully be able to stay on track for 3rd injection in 4 weeeks. (Have had no pain, nor any side effects from either Xofigo or Zytiga.)

Will Doran · August 2017

Zytiga

Slickjy, Mark,& Gene,

Not exactly sure, but my urologist / surgeon was on a clinical trial for Zytiga. I missed being able to get on the trial. It was underway when I was diagnosed. He mentioned this treatment to me the last time I was in. My PSA was holding at <0.010 until about 10 months ago. PSA was at 69 when diagnosed. Had surgery, radiation and two years on Lupron. After being off Lupron for over a year now, my PSA remains below 1.00. PSA came up to 0.155, then to 0334. This was expected as my testosterone came back to normal. I think it was Zytiga that he mentioned we might try if the PSA kept coming up. I'll see what happens next month (Sept.). I'm up for tons of blood work and appointments with my Urologist and New Chemo Doctor next month. Dr. M(Urologist) said they had very good results with this treatment. I think this is what he was talking about. I do know that it began with a Z. I know there are others that "begin with a Z", but my wife thinks this is what he was talking about as well. I'll try anything, if I can stay off Lupron. We'll talk more about this next month.

Good luck

Love, Peace and God Bless

Will

GeneRose1 · August 2017

SlickJY Wonderful News

That is great news about the Zytiga's effectiveness and that you are pressing on with the Xofigo. Did you just wait for your WBC and ANC to come back up naturally or is there any supplements or meds that can help make this happen? I really hope this does the trick and kills that monster.

Max Former Hodgkins Stage 3 · August 2017

Will Doran said:
Zytiga
Slickjy, Mark,& Gene,

Not exactly sure, but my urologist / surgeon was on a clinical trial for Zytiga. I missed being able to get on the trial. It was underway when I was diagnosed. He mentioned this treatment to me the last time I was in. My PSA was holding at <0.010 until about 10 months ago. PSA was at 69 when diagnosed. Had surgery, radiation and two years on Lupron. After being off Lupron for over a year now, my PSA remains below 1.00. PSA came up to 0.155, then to 0334. This was expected as my testosterone came back to normal. I think it was Zytiga that he mentioned we might try if the PSA kept coming up. I'll see what happens next month (Sept.). I'm up for tons of blood work and appointments with my Urologist and New Chemo Doctor next month. Dr. M(Urologist) said they had very good results with this treatment. I think this is what he was talking about. I do know that it began with a Z. I know there are others that "begin with a Z", but my wife thinks this is what he was talking about as well. I'll try anything, if I can stay off Lupron. We'll talk more about this next month.

Good luck

Love, Peace and God Bless

Will

Z

Will,

As you may have read, reports from the last year or two are showing that Zytiga, when given sooner than originally designed for in the perscribing information, has been having dramatic effect for many men. I don't know if this relates to the Study you missed, but sounds possible. My friend who passed nearly 4 years ago was an early recipient of Zytiga when it was administered only post-Taxane. At that time it improved suvival by only around 6 months. The new data is much better and promising.

Good luck and blessings upon your progress,

max

slickjy · September 2017

Zytiga, Xofigo & Lupron

Thanks for the well-wishes, Will & Gene!

My blood counts (WBC, ANC) continued to remain "acceptable" post-2nd Xofigo (radium) injection, so this past Tuesday 9/26 I got my 3rd (of 6 total) injection. No side affect reaction to these injections throughout. Still on the Zytiga, and my PSA decreased further, from 50 to 48 in last 2 months. Will, in addition to all that, I continue with Lupron shot every 3 months - been doing that since Feb 2015. They tell me that will be "foreever".

Though PET AXUMIN scan in April showed bone lesions as previously described (hence the commencement of Xofigo) , I have had very little pain throughout this whole ordeal.

Oncologists remain vigilant of blood results, with weekly CBCs and monthly CMPs. They are expecting combination of Lupron/Zytiga/Xofigo will continue to show positive results. As long as counts remain acceptable, my 4th Xofigo injection is scheduled for early November.

Hoping you are also encouraged by your own progress!

Slickjy

Not so Patient · September 2017

Mark58 said:
Xofigo
I have been battling Prostate Cancer for 13 long years. I am currently being given Xofigo or Radium 223. I've had 3 infusions so far. My mets had spread to my spine, hips, and ribs. My most recent psa was 128. I am not having any major side effects from the Xofigo. Better than I had expected since every drug/treatment has side effects. I'm afraid I am running out of options for treatment. I think chemo is my only option left. I have had , Xtandi, Zytiga, Provenge and now Xofigo. I should know by the end of this month whether or not it is working. I am still getting a Lupron shot every 3 months and still taking Zytiga. The Xofigo seems to me to be a logical treatment. Radium is in the same family as Calcium which means it is a bone seeker. It emits alpha particles which are meant to combat cancer cells. I am 71 now and feel very fortunate to be still enjoying life. I'm not sure I have answered your questions. Best of luck to you!!

What is your Xofigo infusion

What is your Xofigo infusion interval?

Not so Patient · September 2017

slickjy said:
WBC, Xofigo and Rising PSA
Yes, as Max said, decreased WBC is common with Xofigo treatment. My blood is closely monitored - every week, and twice in the week before a scheduled Xofigo injection - in order to be aware of any such effect. My 2nd Xofigo injection has been delayed 2 weeks now beacuse of low and decreasing WBC and neutrophil counts. Good news, tho, as today I had CBC, and WBC is up significantly (tho still low) and ANC increased slightly as well. So right now I am scheduled for 2nd Xofigo injection on Tuesday, 6/20/17. Meantime ...... this week I had PSA tested in prep for quarterly Lupron injection (tomorrow). Bad news, as PSA is now 70.5, TRIPLE what it was 3 months ago. Up til now, for the last year my PSA has been doubling every 3 months, so this sudden surge is especially discomforting. I assume we will contiunue with Xofigo as planned, but I wonder if enzalutamide or some other "stepped up" ADT treatment can be administered in coinjunction with Xofigo??

My doctor says increased psa

My doctor says increased psa is common with xofigo, as it "irritates" the cancers cells and causes increased psa production. He says "not a problem".

slickjy · October 2017

XOFIGO, Zytiga & PSA Rising AGAIN

PSA had been decreasing since started Zytiga in late June - went from 70.3 on 6/12 to 51.7 on 7/27 to 48.4 on 9/12. Suddenly, it is RISING, from 48.4 on 9/12 to 57.1 on 9/26 to 60.3 on 10/10. I had intravenous Xofigo addministered on May 9th, Aug 22nd and Sept 26th.

As has been the case throughout, I have zero pain, despite having mestastic, castrate-resistant prostate cancer.

Oncologist thought is that Zytiga is not effective, suggesting chemo as next step, which scares the bejeeezus out of me.

If anyone has any advice, I'd sure like to hear.

Prostate Cancer Metastasized to my Spine

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