My journey with Jevtana

Rob, Sal, Cathy,
Stopped by to see how the Jevtana was working for all of you. Amazing how your paths are merging with possible clinical trials. Rob, you nailed it...more time with a better QOL.
Sal, the dark days are difficult. I tried to remember that the stubbornness that made Mark fight also made it hard for him to acknowledge and ask for help.
Cathy, hope you are finding time to decompress after the more exhausting days.
Know that you are all in my prayers, regardless of my contact on HW.
Pat

Updates for Rob - 6/27/2014:

   First, my opinion has changed for the better on the Mitoxantrone. After talking to my cancer support facilitator (an oncology nurse & prior nursing instructor), my interpretation of the old chemo listed above has slightly improved.

   This morning, I did receive a call & e-mail from the University of Chicago. I do have an appointment to meet with their Director - Dr. Walter Stadler on July 3, 2014. My Oncologists office yesterday faxed over about a 70-page file on me - to Dr. Stadler. I will have to contact my hospital for the disc copies of my catscans and bonescans - to be mailed to Dr. Stadler as well.

   So ..... it would appear the ball is rolling in a serious manor now. I had blood tests two days ago along with my monthly Xgeva shot. Once again, a Procrit shot was not needed - since my hemaglobin level was good.

My most recent major blood test readings are:

WBC ............. 8.4 actual .............. range of 4.5 to 10.5

GR# ............. 6.8 actual .............. range of 1.4 to 6.5

Hgb ............ 11.7 actual .............. range of 11.0 to 18.0

Plt ..............  248 actual .............. range of 150 to 450

Creatine .......  1.8 actual

   While most of the blood test reading were quite good, my PSA was not! My recent history of PSA readings since being off of Jevtana:

PSA of 15.27 ....... at the time of stopping the Jevtana.

PSA of 33.57 ....... at 7-weeks after Jevtana stop.

PSA of 40.80 ....... at 9-weeks after Jevtana stop.

PSA of 45.24 ....... at 11-weeks after Jevtana stop.

PSA of 88.60 ....... at 15-weeks after Jevtana stop.

   With the PSA nearly doubling in the last 4-weeks, there is a high priority now on starting the clinical trial a the U. of C.

   There's no need to try to describe the disappointment level of the PSA increase in 15-weeks .... when it took 26-weeks to drop my PSA from about 83 down to about 15 while on Jevtana.

   The positive for me was that the Jevtana did work for approximately 6-months in lowering the PSA and reducing the size of several of the tumors. And the side effects were reasonable.

   The next phase is about to start!

Rob & Gizmo

 

Update for Rob - 7/7/2014:

   I am close to canceling the commitment for the clinical trial OTS167. I called for a quick meeting with my Oncology Nurse Practitioner for tomorrow for a number of reasons - but primarily for reviewing the mitoxantrone chemo as my next procedure ... and to review the possibility of getting massive vitaman C infusions as well.

   The OTS167 does require a great deal of time and tests during the 2-month procedure - and my creatine level is uncomfortably close to the maximum allowable for this procedure.

   I'm afraid the side effect potential damage may be more than i can handle with OTS167 - especially at the higher dosages that are anticipated currently. And should the procedure be too tiring, I have no one else who could drive me to and from the 17-trips of the procedure.

   I currently am getting weaker with my appatite/eating problem. And, as of last Thursday, I am down 19-pounds in less than 6-weeks. That needs to be corrected soon.

   Should have decisions and be moving forward within a few days.

Rob & Gizmo

 

Rob, you have faced some really tough decisions, and are doing it alone. That takes a lot of strength and courage, along with undoubtedly a lot of indecision and doubt. I wish you had someone you could use as a sounding board to bounce ideas of off, other than the doctor who probably hasn't a clue what might work best either.
That's is a really hard decision you are facing, and I don't think anyone can tell you what the right answer is. Maybe there isn't a right answer. Maybe Tall Allen will weigh in with an expert opinion.
Do you still have contact with the mentor you arranged for awhile ago? Perhaps just bouncing opinions around will help you feel confident that whatever you decide is the right answer for you.
My best and hugs

Hello Sally .......

   The Jevtana for Ted is over now I would think. It is good to hear he has minimal pain ... and my situation is also with minimal pain. I did meet with my NP yesterday .... and she is fantastic. First - she most obviously cares. Second - she is extremely knowledgeable. Third - she is there for as much time and questions as I need.

   I now understand your statement about phase III only trials. The trial I had planned on going into at the University of Chicago is a phase I and II trial ..... and yes ....... it feels very experimental. That was much of my reluctance to that trial.

   Hey Beejane .......... the frequency of traveling to the trials at U. of C. was one one of the other major problems for me - especially since they would be done alone. And ..... my NP certainly was the person I bounced many things off of yesterday. It was comforting.

   My current gameplan now projects past one chemo. What we talked about was actually the next two chemos - and with a little luck, I may be able to look to a year or so with some QOL. It restored my faith somewhat yesterday - hard to describe, but we both seemed to be on the same page - and looking (with some reservation) to the future and talking about QOL!

   She called in three prescriptions for me - then I was scheduled for an echo cardiogram for this Friday - and my first mitoxantrone infusion for next Wednesday after meeting with my Onco.

   The long-term thought is when the mitoxantrone stops working, I would be chemo-free for a few months - then return to either jevtana or taxotere.

   Wishing Ted the very best and hope the Zytiga will be tried and will work for a period of time. Please keep us informed.

   Beejane ...... I did get ahold of my mentor - and sorry to say he has been in the hospital for over a month now - and possibly at the end of his journey. He does not sound positive at all.

   Hey Tony ........ good to hear from you. Hope all is going well with you in the SW. Keep your buddy safe - hope it was just an abcess. Giz is doing good!

Peace and wellness

Rob & Gizmo

   

Well the oncologist agrees with us about stopping the Jevtana, so no treatment today, just lab's.
Xgeva and bone scan scheduled for 16th and CT the following day, with a follow up with doctor on the 23rd. He advised that he did not think that Vanderbilt had any clinical trails going for prostate cancer and explained the Phases' of a a clinical trial. Phase 1 & 2 do not sound like something that Ted would need to be involved in, to experimental, so Phase 3 would be the only one we would even consider. Not that we feel we are better than the folks who go into those Phases', but the quality of life issues are what is directing us at this time.
Mentioned mitoxantrone combined with the XL184 and oncologist shuddered when I said the word mitoxantrone, and said he couldn't understand why the FDA ever approved that drug because it is so harsh on the "whole" system and he would never suggest that to any of his patients. It was my understanding that you wld not ever go back to taxotere after previous treatment, but with Jevtana you can go and come. Check on that Rob.
So we will be in a "holding pattern" until follow up with oncologist on the 23rd, but we pretty much kinda know what the final outcome(s) will be for us.
No signature again...PSA 73.75 I think they might have done another one today....will see later.....

Hello enjoylife and Beejane. Hello to you all and thinking and remembering your posts and words of wisdom: Dreamer44, nhwife, Jitters99,Passages, littlenm, Zimac & to any of U that I didn't name....

have&will...I know what your going through as well....I worked in the health insurance industry for 25 years (retired from there actually), retired for about five weeks and then went to work for a primary care physician and for a pulmonary specialist (his wife is a doctor also). They helped me with knowledge and contact's during our journey. Sometimes knowing "to much" is not good as you and I have found out in the health care of our spouse's. I stay up late searching for updates and information, constantly looking for new developments within the prostate cancer treatment regime. We moved here to the Nashville area because of family, church and health care (thought Vanderbilt would be so "main stream"). The medical team Where we came from was more aggressive and on "the cutting edge" in regards to treatment for Ted's disease. We are aware of the length of livelihood and understand our life expectancy, but we want to go as far as we can with holding onto a good quality of life during this journey. This forum has been a tremendous help to me, even though we have lost a good number of warriors since I joined. I have been helped to understand that it's okay to "cry" and to also take care of myself (I should do better), along with caring for my husband.

I am on Dr. Myer's blog, but feel he can not help with my husband's condition any more now, at this stage. We have gone almost the full gambit and are nearing the end of the road. You can e-mail me directly and we can chat more candidly there or I can give you my local phone number via my e-mail route. Go to the member screens and look up our tednsal for e-mail address.

Gizzy'n me is another one who is a good person to watch his posting's.....he and my husband are walking on the same pathway.

Peace and love and hope........

Haven't posted in awhile due to several situations that arose after thinking that the PSA was rising....
Ted had radiation due to the lymph nodes being involved with his PC. The radiation was not as "pin pointed" in 2000 as it is today, so Ted has scar tissue which causes him a lot of difficulty (blockage) every so often. He has had a cystoscopy a few years ago to open up that area, well it seems that this same thing happened again. We were scheduled to go on our "family" vacation to HHI but this "popped up and Ted had to have a Foley catheter inserted so he could void. This procedure went without any problems, but Ted thought that he was totally blocked and the Foley couldn't be inserted. The staff at the current urologist are amazing, kind, gentle and considerate of Ted's concerns, and they told him to go on to our family vacation. So we did, Ted was a real "trouper", he could't do much but sit around. When we got back home from vacation, we went that Monday to the urologist to have the Foley removed, since we were going to see the oncologist the following Wednesday, we thought that we would have the urologist go ahead and do a PSA, so we would have the "numbers" to talk about continuing the Jevtana or not. The PSA was 73.75 (07/07/2014) ....way up from the previous one on 06/11/2014 of 55.25. So we were very disheartened and felt that we had arrived at the end and next would be clinical trials. Oncologist said let's do a CT and bone scan to find out where we were with the cancer, we agreed, since it had been six months since the last ones were done. We did have labs drawn on this visit (07/09/2014) and discussed with the oncologist the possibility of another avenue of treatment.

But wait, I look online that night and the PSA that was drawn that morning was 47.16. Well that sure is a difference. E-mailed doctor about this and his response was that the 73.75 could have been a "bad read" due to the removal of the Foley catheter. Suggested that we go ahead and do the scans and lets review the results and decide what our options would be.

Ted has been having chills and night sweats the last couple of weeks and walking around with his fleece bathrobe, lose of appetite, feeling fatigued and down right yucky. Urologist and oncologist thought maybe UTI, took urine sample for culture. Sent a prescription for five days of an antibiotic. That seemed to help with the night sweats, still cold and fatigued. Culture came back, no UTI.

So tomorrow is almost here and I am worried and afraid that the scans will prove that the cancer is spreading and winning the battle. I can see a big difference in Ted, his body language, how he walks, eats, activity levels, he's starting to have a little more pain and he just seems so wore out sometimes. I, on the other hand am wore out as well.......trying so hard to always be "up".....and really feeling so down.....will post tomorrow as to what we may or may not do....

No signature again.......will post this same message on the caregivers thread......

Rob......Good Luck....and to all of you PC warriors and caregivers......Peace, love and hope...

have&will......

Contact Tennessee Oncology. Depending where you live, they have offices everywhere within the state. You can check a couple of the postings & see how we are doing..... "Jevtana and beyond" and "Caregivers".

If you are not satisfied with Vanderbilt, I will strongly suggest Tennessee Oncology.

My e-mail address is available if you wish to contact me directly........