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Posted 7/15/2014 2:31 PM (GMT 0)
Hello all ........

   This is a continuation of the thread "My Journey with Jevtana" - or perhaps really a Part II of that thread!

   The hope is that the real life experiences here will help more than what might be found on a cancer website. It is specifically for metastisized Prostate Cancer .... and for those who have been thru many of the typical treatments while wondering "what's next"!

   I have no medical training. I am in my 3rd to 4th year of stage #4 or metastisized PC - and was originally diagnosed with PC in 2003/2004!

   Tomorrow I will be starting my 5th type of chemo - and will be getting full blood tests - and will have a new baseline PSA by Friday of this week.

   As it's been said on this forum many times ... welcome - although sorry you have to be here.

To be continued.

Rob & Gizmo

Note: the signature is thru 4-months ago.

 

Posted 7/16/2014 3:19 AM (GMT 0)
What type of Chemo are you starting tomorrow? You have been so strong and always full of good information. Best of everything to ya.
Posted 7/16/2014 1:53 PM (GMT 0)
Hello Barb1 .....

   I will be starting mitoxantrone today.

A little background:

   I met with the group at the University of Chicago about two weeks ago to interview for going onto a trial. I was approved for their trial on OTS167. After a few days review of their paperwork - and thought, I felt I could not likely handle that trial physically. It is a 2-month program that calls for 17-trips to the U. of C. (about an 80-mile round trip for me). Four of those trips are for tests from 7:30am to 5:30pm (plus travel time).

   I live alone and have no one to drive me - so the physical demands are even more important than with many. And - OTS167 is a phase I & II trial - meaning it's quite experimental - in addition to being the first time this has been used on human beings.

   My alternative was mitoxantrone - an infusion once every three weeks, and it is being given in my Oncologists office which is only a 5-mile round trip.

Other factors:

   Currently, I am losing weight (down over 20-pounds) the past 5 or 6-weeks and i can't seem to eat much. Everything is difficult to eat. I am getting weaker and am very concerned about any kind of required distances to drive.

   I went thru a similar period while on Taxotere two years ago - losing over 40-pounds before regaining the desire to eat. My G.I. system has been a mess for over two years now - so it does make traveling difficult at times - even for just a few miles!

   My PSA was up to 88.60 just over two weeks ago - and expect my new baseline will be over 100. Results should be available by Friday at the latest.

   I do also have severe kidney issues. The PCa did block both kidneys - and each kidney now has either an internal stent or a nefrostomy tube for kidney function. The OST167 was difficult on the kidneys makingit even more difficult to consider.

   The above is a brief summary of what brought me to this point. I will update after my blood tests and results - along with any side effects of the new chemo.

Peace and wellness

Rob & Gizmo

 

Posted 7/17/2014 1:50 PM (GMT 0)
Mitoxantrone treatment #1 on 7/16/2014:

   The meeting with the oncologist was very similar to a pre-chemo meeting when on Jevtana. Blood draws also were very similar. And the infusion was actually shorter in timeframe than with Jevtana.

   The nurses did state that they were going to watch me more carefully because this is the first treatment of this chemo. They advised me that my urine would likely be green/blue for a few days ... and a follow-up meeting for discussing the side effects was set-up for one week from today.

The primary blood test readings were available immediately and were:

            7/16 reading   6/25 reading      Range or Limits

WBC         5.3                 8.4                    4.5 to 10.5

GR#         3.9                 6.8                     1.4 to 6.5

Hgb         11.4               11.7                  11.0 to 18.0 

Plt            230                248                   150 to 450

   I would expect to have my PSA and my creatine level by tomorrow and will post those along with any side effects feelings - by Friday.

Peace and wellness

Rob & Gizmo

  

Posted 7/18/2014 10:54 PM (GMT 0)
Some additional info on Rob - 7/18/14:

   I did get a few blood test results back today - that are typically sent out. The big surprise to me was the PSA. A little over two weeks ago, my PSA was up to 88.60 and I was expecting a current PSA reading of 105 or more. The actual reading was 89.30 or just barely over the reading from 16-days ago.

   So my baseline will be 89.30 at the start of this newest chemo.

   My creatine level was 1.8 ... and 1.8 to 2.0 is typical for me. I have not yet had nausea - but do expect it to start soon - and have meds for the nausea that can be taken up to every 6-hours.

   Constipation has been steady for me for two days so far - but that's my most common side effect - in addition to diarrea. My eating is still not good and I'm still losing weight.

Note:

   I'm using a new product to help reduce the pain of the needle going into my port. Two days ago, there was no pain at all. This cream deadons the skin over the port and is called - Lidocaine 2.5% and Prilocaine 2.5% Cream. It is by prescription.

Unless something major happens or changes, the next update will be after next Wednesdays meeting with my Practitioner Nurse.

Peace and wellness

Rob & Gizmo

 

Posted 7/21/2014 2:29 PM (GMT 0)
Side effect updates - 5-days after first infusion:

1) My previous and very annoying daily diarrea of the past 6-weeks has seemed to stop.

2) My long-standing constipation has now become daily for 5-days with just one episode of diarrea on Saturday morning.

3) The warned urine color change to green or blue - barely happened and was closer to a light clear green for just a couple of days.

4) The major nausea has not yet become major - took just one nausea pill. Seem to have nausea briefly once daily so far!

5) No other side effects to report.

Note: my weight loss continues but my ability to eat a few things seems to be getting a little better. Watermelon works extremely well - goes down easy - never wants to come back up - I know -such little food value!!! Tomatos & cantalope have worked well ... so have a couple of varieties of Chex Mix snacks. Wheat chex cereal was tough to get down.

Will be meeting with my Nurse Practitioner on Wednesday - should have more by then.

Peace and wellness

Rob & Gizmo

 

Posted 7/21/2014 5:10 PM (GMT 0)
Hi Rob,

That is great news so far with your treatment. Thanks for keeping us updated, we do read even if we are not posting frequently.

As you know my husband’s PSA came in at 227 a few weeks ago, but now it is 48.2! This is after receiving Treslstar and starting Xtandi again. Trelstar had to be given in order for him to start the trial, in which he was denied. He has been hormone refractory for many years therefore he quit hormone treatment. Now the Oncologist is baffled is to what is working, the Trelstar or the Xtnadi or both? Can a man who was considered hormone refractory have hormone treatment work again? And for how long?

The downside is he has a lot of protein and creatinine in his urine. Next time we see the Oncologist is one month and it will be interesting to see what the PSA reading will be.

Thinking of everyone.
Cathy
Posted 7/21/2014 10:41 PM (GMT 0)
Superb Cathy ......

on the PSA reduction. So happy the trial is working for your hubby.

Rob & Gizmo

 

Posted 7/21/2014 11:54 PM (GMT 0)
Rob....I went thru chemo for 6 months (every other week) with my rectal cancer. It was a horrible experience . To prevent weight loss, I did smoothies every day and still do....my current concoction:
1 tomato, handful of spinach,3 mini carrots, handful raw walnuts and raw almonds, blueberry flaxseed, frozen blueberries, strawberries, apples, bananas, orange juice, coconut water, honey ,and a big scoop of soy protein powder....you could add ice cream for calories or peanut butter. These are nutritional powerhouses, and they really taste good.....my girlfriend and nephew are both picky eaters and love them. You will need a powerful blender though .Also for appetite enhancement you could try M.M. if it is allowed in your state....it can be very helpful for both nausea and appetite.
Posted 7/22/2014 1:30 PM (GMT 0)
Hello ZM ...........

   Thanks for the suggestions. The accumulation of 3-1/2 years of HT and 2-1/2 years of chemo have made me into a sometimes lifeless person. In other words ....... I'm pooped!

   As bad as most of the McD's food is, I have tried all 3 of their smoothies. They're all fruit combos - and surprisingly good from McD's!

   I believe i have hit my low point of energy recently. The energy level is a little better now than a few days ago, but even now - it does take an effort to go to the store to pick-up even a half dozen items.

   My high priority list for today is to pick-up some eggs. It's a quick fix to make scrambled eggs with toast - and some decent protein.

   I do need a more powerful blender - but smoothies made at home are on my list for the near future. I'll keep and try your recipe. Thanks again!

Peace and wellness

Rob & Gizmo

 

Posted 7/22/2014 2:30 PM (GMT 0)

 Hi Rob,


 I read your posts here frequently. I hope this new treatment will be the one to help you. I have been worried about your lack of appetite and the nausea.


 I will suggest a cpl of things that might help you. My younger son is into all healthy foods, so he makes a lot of the smoothie drinks w/ protein & veggies. He got something called a "Nutri Bullet' or something close to that name. He picked it up at Walmart for about $100. It breaks down everything!!! lol


 The other thing is about you going to the store to pick up the groceries. Does your local grocery store have a 'Shopping Service'? My store has a set up where you can contact them on line w/ your grocery list, they pick up all your items, pack it up and bring it to your home. It might be worth checking out.


 A few wks ago I had to ask my older son to help me w/ groceries, since my DH wasn't able to go due to recent surgery. We had a good time, but I know my children aren't always going to be available to help. It will probably be a situation I will need to look into soon.


 Hope the treatment works & perhaps my suggestions can help, too. I also have a problem w/ frequent nausea - as in most days. It is such a PITA!! It is hard to get excited about cooking and/or eating.


 I wish you the best.


 God bless.  Alice.

Posted 7/22/2014 5:10 PM (GMT 0)
Hi Rob,

My husband couldn’t go on the trial because he has elevated protein/creatinine level in his urine. But he did get the Trelstar because it was necessary in order to begin the trial. A couple of days later they denied him. If it weren’t for taking all the tests and procedures of the clinical trial he would have never received Trelstar. We are thinking that it is the combination of Trelstar and Xtandi that brought the PSA down. I don’t know what’s planned for the future.

Glad to hear that you preparing food you can keep down. I found that Ice Cream really helps.

Take care!

Cathy
Posted 7/22/2014 7:21 PM (GMT 0)
Cathy ...........

   Sorry for the misunderstanding - BUT ..... good news anyhow. Whether it was the Trelstar or the Xtandi ...... or the combination!!! That is a terrific reduction of the PSA.

   I will ask my Nurse Practitioner about the Trelstar - definition and when used! I see her tomorrow and have some good news for her (so far) on side effects.

Irish Babe ..........

   I have not only heard of the "Bullet" but am planning on getting one. I've heard it's pretty easy to clean too.

   Thanks for the suggestion - didn't know where I could find one.

Peace and wellness

Rob & Gizmo

 

Posted 7/23/2014 1:11 PM (GMT 0)
Good day Rob & Grizzy.......
Today is the day we find out how we "R" doing with the cancer......per CT & bone scan results. Don't know what we will do, decisions, decisions, decisions.....when can we just run away? Of course, when we run away, we are still bringing everything with us......

We have contacted another oncologist (a woman) who's practice works with Sara Cannon Research Center (they are the ones who do most of the clinical trails locally). Requesting medical records, CT & bone disc's from Vanderbilt will be a chore. Our current oncologist is not as aggressive or assertive as our previous doctor was and this has caused us concern. We did mention mitoxantrone to him, and as I said before he is not a proponent of this treatment and will not even think about using this chemo drug. We have had discovered several errors with his staff in the ordering of medications and e-mail messaging misunderstandings, where a phone call directly from them would have been the best method of communication. I can not ever talk directly to anyone, they have the opportunity to call us directly, but this option has not ever occurred. Therefore, our confidence level has been compromised by these instances and causes us concern (me really).

I saw your "baseline" and am thrilled with your numbers after being off Jevtana for so long and am assured you will continue to "beat the odds" Rob. Will post if able tonight of our outcome, but decisions may not be made as quickly.....

Peace, love and hope to all here on HW forum.
Posted 7/23/2014 5:42 PM (GMT 0)
Sal!

I see you both are having a rough time of it too. Always a challenge isn't it?

Nice to see your posts.

Hugs,
Cathy
Posted 7/24/2014 1:43 PM (GMT 0)
Hey Sally .....

Hoping Ted's scans came out with some positives.

       ***************************************

Nurse Practitioner meeting with Rob - 7/23/2014:

   Generally good news. From my recent echo cardiogram, my heart is pretty strong. My weight loss for this past week was very minimal. I was reminded I need to have more water daily - 60 to 80 oz and I'm about 20oz short of that.

   My mitoxantrone side effects so far are surprisingly mild:

1) Intense but very little nausea.

2) No body or bone pains yet.

3) No noticeable hair loss yet.

4) Very tired & somewhat weak - but some of that is my poor eating.

   Blood test came out surprisingly well:

             Before chemo - 7/16   After chemo - 7/23           range

WBC               5.3                              4.2                  4.5 to 10.5

GR#               3.9                              3.6                  1.4 to 6.5

Hgb               11.4                            11.4                 11.0 to 18.0

Plt                  230                             170                  150 to 450

   As a result, no procrit shot was needed & I was told to not have a blood draw next week.

   I did have my monthly Xgeva shot ..... and was told on 8/27 (my 3rd infusion scheduled) I will have my first PSA check. A little disappointed ihave to wait another 5-weeks to find out any PSA change, but that's being done to reduce the anxiety. The NP wants to give it two full infusions before checking the PSA. My Oncologist may have it checked sooner. And I will likely have a catscan shortly after the third infusion.

           *********************************************

Cathy .......

   I checked a few things with my NP yesterday and she mentioned that "Trelstar" is an HT similar to Lupron. And with Xtandi, there seems to be an effort to making Xtandi a first line approach with PCa - since so many have had success with Xtandi.

   Hoping for your continued success for your hubby with the Trelstar & Xtandi.

Peace and wellness

Rob & Gizmo

  

Posted 7/25/2014 4:02 AM (GMT 0)
I tried to post a couple of times, but something must be wrong with my laptop and lost everything that I was ready to "submit". So I will try again......
Our news was very distressing.......bone scan viewed multiple new spots....almost enveloping Ted's whole skeleton. CT did not show any change to the size of the lesions in the lungs or the cyst in the kidney. The oncologist was not positive with any other options that he had available...no clinical trials, and Radium 223, he said has not been approved to use at their facility. The whole Vanderbilt experience has been a "disappointment". We have not had one positive incident since we made the big move, the weather was horrible, cold & wet, we find something wrong almost daily with the house that we bought, Ted hasn't felt good since the move, fatigue, no appetite, he's lost about 20 pounds......I could go on and on, but why........We have made another appointment with another oncology association and will see that doctor on the 7th of August. I am gathering all of the medical records and disc's to take to that office. They want to see everything prior to our visit.
So our outlook as of this moment is not very bright.....and according to the oncologist Ted's future is not very long either. He is already having some of the "end stage" symptoms; fatigue, failure to thrive, new areas of pain, he did have that urinary blockage. The only other systems left are spinal cord compression and skeletal fractures. Yesterday (Wednesday) and today (Thursday) have been "rough". Told husband that we can do that for a time, but we can't waste all of our time that we have left crying, we have to "do"....

Just another "bump" on our PC road....maybe new doctor will have some options that won't make Ted's quality of Life worse and extend it a little .......we shall see....

Rob....good luck and continue being strong for all of us.....
Posted 7/25/2014 7:05 PM (GMT 0)
Hi Rob, I wonder if you can have someone help you with all this. If you get weaker or are in bed for a few days, who do you call? It would be helpful that that person, whoever that is, family, friend, payed help, gets used to helping you. And perhaps together you can discover ways of getting you to the trial.

When I had extreme nausea and could not eat (pregnancy), the only thing I sort of managed was a banana and, out of all things, Greek salad. I only ate what could fit into one hand per day, but plenty to keep me alive. I always thought "eat something, however small it is, one bite is better than no bite". The body does not need that much food to keep functioning. Are you going for walks or a swim? First few days may be hard, but in a week you may already feel better. We are thinking of you.
Posted 7/28/2014 1:02 PM (GMT 0)
Hello Special Lady ......

   At some point, I will need help. I'll have to find at least a part-time caregiver at some point. But not yet!

   The trial was a phase I and II trial - that is, the only concern was to arrive at the largest safe dosage of the experimental med - and there was a danger to the kidneys. I have kidney issues - serious ones, so that was another negative aspect of this particular trial.

   After the accumulation of HT and chemo that I've had, excercise is somewhere between difficult and impossible. Weakness is the word. Anything besides minimal excercise is not realistic. I was in a group for controlled excercise - three times a week - and did have to stop going about three months ago.

   Energy is needed for any type of excercise - even just walking, and my energy level is extremely low. Lately, even when taking "Boost" for it's protein and carbs .... I immediately have diarrea multiple times. Here again, I believe it's the accumulation of the chemo (2+ years) and HT (nearly 4 years)!

   Thanks for the thoughts and suggestions though.

Peace and wellness

Rob & Gizmo

 

Posted 7/30/2014 2:59 PM (GMT 0)
Rob - update on side effects - 7/30/2014:

   It was two weeks ago today for the first of my new chemo infusions. There have been a few side effect changes:

1) There has been no nausea now for about a week.

2) The diarrea is much less frequent now.

3) The constipation is much more consistant now.

4) No noticeable sign of hair loss yet.

5) No signs of muscle or bone ache yet.

   Miscellaneous: eating slightly better - but still not good. Total weight loss so far in last 7-weeks = 26+ pounds.

   Positives: blood tests came out very good last week (one week after infusion), so no blood tests this week.

   Negatives: the pain deadoner creme for my port (access) did not work last week. Still tired .... will that ever change???

P.S. - Sally - hope Teds appointment in a week with the new doctor is a good experience for you both.

Peace and wellness

Rob & Gizmo

 

Posted 7/30/2014 4:04 PM (GMT 0)
Rob, as I said before, think about doing smoothies.....you can add anything you want to them...you can't taste things like spinach ,carrots, tomatoes when mixed with fruits....plus add soy protein powder....honey, peanut butter ,ice cream? Anything with calories.....before I started doing smoothies I never ate fruit and limited veggies, but my current concoction is a powerhouse of good foods, add high calorie and other things to your taste. The Nutri Bullet is relatively inexpensive...I have a vitamix which is costly. When my last dog was dying from her cancer I was able to keep her going for months with my smoothies...the vet was even surprised she lived so long.
Posted 8/7/2014 3:59 PM (GMT 0)
Regarding smoothies:

   My dilemna is not a bad appatite. It's more like a disgust for simply eating anything .... and, some things (like liquids) encourage downpours of diarrea! Sorry for the descriptive words!!!!

   However, my plan is to try to have one fruit smooty a day (from McD's). They are surprisingly good. And in time, purchase a "bullet" or the newer "pro bullet" at 900-watts. I think they have a place in my diet - just want to make sure first before buying the hardware.

 

Oncologist meeting & chemo - on 8/6/2014:

   My blood tests were disappointing and worse than two weeks ago - or one week after the first chemo treatment of this type. The white blood cell count was low ..... and after some reiview, my Oncologist decided that this chemo treatment of mitoxantrone (my second one) needed to be a half dosage. My first one three weeks ago was a full dosage.

Blood test results:

Category       7/16/2014      7/23/2014      8/6/2014        range

WBC                 5.3                4.2               2.5            4.5 to 10.5

GR#                 3.9                3.6               1.1             1.4 to 6.5

Hgb                 11.4              11.4             11.3           11.0 to 17.0

Plt                    230               170              168            150 to 450

Notes:

1) a catscan is scheduled for 8/15/2014.

2) a blood test/meeting is scheduled for 8/20/2014.

3) kidney stent replacement surgery is scheduled for 8/25/2014.

4) next mitoxantrone treatment is scheduled for 8/27/2014.

PSA latest reading & side effects update likely tomorrow - 8/8/2014.

Peace and wellness

 

Posted 8/7/2014 7:25 PM (GMT 0)
Gizzy'n me(Rob)......oops.... don't like those numbers, all of them are to low. You still sound faithful for the treatment though.......so continued god luck. Has your "angel" been able to get back with you to help with your emotional state? The last I heard about him was that he was in the hospital, don't know what happened after that.

We (Ted & I) are in a "better place" today, than we have been in quite awhile. Doom and gloom was what we surmised we cold expect to be in store for us. After the Vanderbilt doctor advised that he has nothing more for us and that we could try another doctor or facility, we were a little upset. In other words, his meaning was " go home to die". Every problem that Ted had, he said was related to Ted's cancer, fatigue, night sweats, cold chills, pain, etc. I looked at Ted's labs and asked about his blood counts, he said, oh, he's just a little anemic, and "brushed" it off. He suggested a high dosage of the Lortab or morphine. Well Ted heard the word morphine and that meant to him, that he was on death's door. As I said before there was a couple of other possibilities (Radium 223/Xofigo) that could be utilized for Ted, but Vanderbilt doesn't "step out of the box"....so that was a no go.

Therefore, another oncologist....off we go......finally after multiple phone calls to Vanderbilt medical records, oncologist nurse and any other person who could help, the records were sent to new oncologist. In the interim, Ted went to his PCP and we asked for as many tests to be completed as possible, to see where these night sweat and chills were coming from. Had some of the results and took them with us to the new oncologist. Immediately she saw where Ted's iron was way, way low and set him up for an iron infusion today, with another one for next week, said that he was anemic. I've got to go and get a B Complex for him as well. Setting him up for he Radium 223/Xofigo and possibly combining the Zytiga with the Xofigo (if insurance will pay for it). Said he was the perfect fit for this treatment and that it's not a clinical trail. Anyway, we may not cry for a few days and try to be stronger for awhile. I must admit, that we are very, very disappointed with Vanderbilt and it's "caring" for it's patient's. Patient's and their caregiver's must at all costs, be proactive in researching and "keeping" the right physician, who will utilize the latest and possible "out of the box" treatment's available for the continued life expectancy of that patient.

Will keep checking in on U Rob, and just wanted to let you know where we are at the moment.
Posted 8/10/2014 3:12 PM (GMT 0)
Sally ....

   I have not tried to get ahold of my Immerman Angel again. When last talking to him, he did not sound good at all.

   My big concern of my blood tests were the WBC ... especially with surgery coming up in two weeks - for replacement of my kidney stent.

   It seems there was no PSA test last week - 21-days after the first chemo treatment. I will be having a catscan this Friday - even though that seems too soon.

Update on side effects ......

   Now that it has been 25-days since the first infusion of mitoxantrone and 4-days after the second but reduced dosage of mitoxantrone, side effects are now:

1) Very tired and weak (some of that due to minimal eating).

2) Generally in a state of constipation most of the time.

3) Diarrea is now unpredictable - sometimes fairly severe.

4) Very little muscle pain - or bone pain.

5) Nausea is not frequent - but can be fairly severe.

6) Very little hair loss.

To Sally again:

   Sorry to hear of your disappointments with the last Oncologist - hope the next one works better for you both.

Peace and wellness

Rob & Gizmo

 

Posted 8/10/2014 9:42 PM (GMT 0)
Rob,

I'm sorry that I haven't posted recently. Your lack of appetite and the diarrhea are very concerning. Maybe this is a helpful suggestion, maybe not. Twenty-plus yrs ago I had my gallbladder removed, before I even left the hospital, I had a terrible time w/ diarrhea. The surgeon originally thought I had an infection and kept me in the hospital for 9 days.

He finally released me and said I was fine. Except for that part w/ constant diarrhea - yeah! It didn't clear up, so I went to my PCP. He sent me to a gastro. That dr said it was very common w/ ppl who had the gb removed. He put me on a med called 'Questran'. It was a god-send. I got my life back. I couldn't leave my house to make a 10 min trip. I was on that for over 10 yrs. and it worked great!

I'm not saying it has to do w/ your gb, but maybe ask your dr if this med could be helpful to you.

My DM used to have a good appetite, but when she was very sick, she didn't want to even think of food. We asked if there was anything that could 'jump start' her again. They rx her a med called Megestrol, I believe.
But if that's not the exact name, it's close. Your dr should know what we are referring to - hopefully. :)

I know you have a lot on your mind, personally and w/ your friend. Just wanted you to know my thoughts and prayers are w/ you.

God bless. Alice.
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