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Posted 8/10/2014 11:48 PM (GMT 0)
Have you thought about M.M. ? Not sure if it is legal in your state. It was a lifesaver for me last year when going thru chemo...without it I had no appetite for days at a time, with it I ate every day. might be worth considering ?
Posted 8/11/2014 4:10 PM (GMT 0)
Sally, I have to agree that Vanderbilt's people will not step outside the box. It was utterly aggravating to finally get Casodex added to my hormone therapy, even though with a Stage 3 G9 5+4 case it was pretty clearly indicated in the literature I could find.

The urologic oncologist, the radiation oncologist, and the medical oncologist were all in lockstep saying no, Lupron alone was all I needed.

During the 8 weeks leading up to my radiation treatment, my PSA wasn't coming down fast enough (from 9 down to 2 or so after 6 weeks, goal <0.5 by start of RT). So at that point, the UO relented and added Casodex without any protest at all. I'm still on both, so ADT2 and will be for the duration of 3 years.

Coupled with the IGRT/IMRT I received there, I'm in great shape now with undetectable PSA and very few side effects. At this point I'm happy with my treatment from them.

Their defense when I complained about how hard it was to add Casodex was that they are a referral hospital for people from all over who have complications from various aggressive therapies, and combinations of therapies. So, they keep things very basic, and only do what they believe clinically proven "necessary". They are a very conservative operation.

They're not even in favor of the HDR/IGRT combo, saying with IGRT they focus the treatment well enough to achieve the same outcomes. They treat people with strictures resulting from other places using the combo therapy, so maybe that's why they're not so enthusiastic (For others reading this, I asked my RO his opinion about the alpha/beta ratio for prostate tissue. He said, "Well, that's quite a controversy with strong opinions on both sides." Seems to me it should just be science, but that is behind a lot of the work on SBRT with fewer higher doses.)

If someone's seeking "cutting edge", or action based on the very latest studies, Vanderbilt's not the place as far as I've seen. They're conservative and do only what has been "proven" in their experience.

Jerry
Posted 8/12/2014 1:57 PM (GMT 0)
To alice & to ziggymonster:

   I do have an appatite - so lack of appatite is NOT the problem. It's that food disgusts me when eating - and it usually doesn't taste good - with a few exceptions. I also get filled quickly!

   I just had a couple of pieces of chicken yesterday - broiled with the help of hickory chips and smoking the chicken. It is usually excellent. I saved half for today's lunch. All I could handle was a wing, a leg and part of the thigh. I also ordered a doubleorder of melon - instead of potatoes and vegetable with it. As usual, the watermelon tasted great. The cantaloupe and honey dew both were just OK!

To alice:

   I will talk to my oncology nurse practitioner next Wednesday about your suggestions Alice - regarding the diarrea. Since this has been going on now for 26-months with little variation to the constipation/diarrea cycles, I do believe this is something I will regrettfully have to live with. Call it - part of the tempered Quality of Life!!!

   I'm actually afraid my surgery in 13-days may have to be called off because of my low White blood cell count. My hemoglobin is checked every three weeks and I haven't had tohave anprocrit for many months now - but the new chemo seems to affect the WBC pretty drastically.

   I hope all is well with you and yours.

Peace and wellness

Rob & Gizmo

 

Posted 8/21/2014 2:40 PM (GMT 0)
Unexpected update for Rob - 8/20/2014:

   My surgery for my kidney stent - was called off or postponed. My Primary doctor (who I've had for nearly 25-years) refused to sign-off for my upcoming surgery. An EKG, urine test and his signing off needed to be done by this Friday. He gave me his position with a 3-day notice - saying he wants me to to get a cardiologist, an appointment, whatever tests and for those test results to be inhis hand by Friday - all in 3-days! Just Impossible ...... so i had to cll the surgeon and the hospital to postpone the surgery.

   It was apparent to me he does not want the responsiblity for me as his patient. My EKG's always show a slight disturbance - but i had an Echo-cardiogram 5-weeks ago, and my heart looked very good and strong on a test that's more meaningful. My primary didn't care!

   So ...... time to can his butt! I have two strong referrals from yesterdays visit to my oncologists office - and will start my research today.

Expected update for Rob - 8/20/2014:

   I had a long meeting with my Oncology NP - and blood draws for several reasons - and my monthly Xgeva shot. My next chemo is scheduled for next Wednesday - and i will be getting a shot the day after for the lowered WBC readings. My white blood cell count has been affected by the mitoxantrone chemo.

   I will be going in for a catscan this Friday (missed the one last week) and will have my first PSA reading while on mitoxantrone - also this Friday.

   My current CBC readings - as of yesterday:

              8/6/2014             8/20/2014             range of limits

WBC          2.5                      3.2                       4.5 to 10.5

GR#          1.1                      2.2                        1.4 to 6.5

Hgb          11.3                    11.1                      11.0 to 17.0

Plt            168                     259                        150 to 450

Notes:

1) 8/6/2014 was three weeks after one chemo treatment (only).

2) 8/20/2014 was two weeks after the second treatment (1/2 dose).

   I expect to have my first PSA reading while on mitoxantrone - by tomorrow (Friday) - along with some catscan information.

Peace and wellness

Rob & Gizmo

 

Posted 8/23/2014 2:21 PM (GMT 0)
For Rob - 8/22/2014 changes:

   To my surprise, my Oncologist yesterday removed me from the "mitoxantrone" infusions. I only had two total - but after yesterdays catscan, it was apparent that my cancer at my adrenal glands continues to grow.

   I asked if I might be able to go back on Jevtana. He said that the middle of September would be the earliest that I could - but he would like me to get a second opinion on either a return to Jevtana or any possible trial that might be available.

   I have the names and telephone numbers of the chief oncologists at the University of Chicago and Northwestern University. But I'm seriously questioning the QofL remaining now - and frankly getting tired of this all.

   My PSA (as of an 8/20 blood test) was up to 100.39 .... or up from just over 89 just 5-weeks ago at the start of mitoxantrone.

   I am currently without a Primary doctor - but have found one I would like. And my local and very active cancer organization is closing it's doors at the end of next month due to financial reasons. I have been going to a very good metastatic cancer support group there. - which will disappear.

I need some good news!

Rob & Gizmo

 

Posted 8/23/2014 6:09 PM (GMT 0)
Rob.....We R in the same boat as to wanting some good news as well. Husband's latest PSA was 132. His last Jevtana infusion was on 06/11/2014. He will start on Xofigo/Radium223 this coming Thursday (08/28/2014. It's a 60 second injection given every 4 weeks, that is, as long as his blood count stays up. He has been having a lot more pain than ever before, arms, shoulders, back and joints. He got his Xgeva & Trelstar injections on the 14th. The Xgeva injection could be causing some of the "extra" pain. It is odd that he suddenly experiencing these "pains" when he hasn't has these systems in several months after being given an injection. We are both thinking that it's the cancer growing and compromising everything in it's path. He has been taking his Lortab (10mg) every 4 hours or sometimes sooner because the pain is really getting to him. I will call his oncologist on Monday to see if he needs something stronger. His apatite is not good, but have started giving him Megestrol and hoping that will help, especially with him taking so much pain medication. Can't wait for him to start the Xofigo because it is suppose to have some qualities to stop or curtail spme of the pain issues.

Maybe we are on our last journey, I don't know, but he has gone down so fast in just a couple of weeks, I can see the change in him almost daily and it's scary. I hate to see him in pain.

Peace,love and hope to all!
Sal
Posted 8/24/2014 1:15 PM (GMT 0)
Rob and Sal
You are both facing difficult decisions, and it is heartbreaking to know that there are no words we can say to help. Each of you are trying to make the right choices and really, there aren't any right answers. Life doesn't seem to be a multiple choice quiz. It's just stumbling along the best you can.
Rob, I'm so sorry you have to do this alone. I wish there was someway we could physically help. Words are pretty empty when you need someone to make a meal, or offer a ride. Some things you just have to go alone. But I'm thankful you have documented your journey here which will be of immense help to other men who want to have a realistic idea of what some treatments might involve.
Posted 8/24/2014 7:27 PM (GMT 0)
Rob and Sal,

I concur with Beejane, she hit the nail on the head. I feel for both of you.

Rob, Please know we are here anytime you need anything. Don't give up trying. My husband's PSA dropped to 15 from 227 when he went back on the Xtandi with the trelstar. You just never know how each treatment may work.

Thoughts and prayers to all.
Posted 8/27/2014 1:54 PM (GMT 0)
Brief update - for Rob:

   I've taken several days off - two by choice and two out of necessity for stomach pains (moderate) and diarrea (substantial). I will be calling the primary doctors office today (hopefully my new primary) - he is taking new patients and does take medicare while having a 5-star rating.

   I'll also call my Pulmonary doctor - past due to see him. And I'll call my oncologists office to talk to my NP there. She mentioned last Friday there might be another option with mixed treatments.

   She also used to work for Dr. Moran in Westmont at the Chicago Prostate Cancer Center - who has an excellent reputation. I don't know if he is an oncology surgeon - or if he does work with chemos as well. He did my original brachytherapy nearly 11-years ago ... and he may be a very good source for a second opinion for me at this stage. 

   I needed a 4 or 5-day break ..... back at it now!

Peace and wellness

Rob & Gizmo

 

Posted 9/1/2014 12:10 AM (GMT 0)
Rob and Sal,
Just wanted to say I was thinking of you. Rob, I hope you had a good weekend, and are feeling your time away has helped. It's not easy, and there's nothing we can do to help. Your difficult choices are a heavy burden to carry. Sal, please keep us informed. When a spouse is ill, you become their mother and they assume the recalcitrant child role. It's so frustrating and heartbreaking at the same time.
Both of you are facing such difficult times. I hope knowing everyone here is keeping you in their thoughts and well wishes will be of comfort.
Rob, you win the prize for carrying on, alone, in trying circumstances and always being positive. Sal, well, caretakers have a special spot in my heart.
Posted 9/1/2014 3:15 PM (GMT 0)
Update for Rob on 9/1/14:

   My inability to eat continues. I did have a little watermelon and one greek yogurt yesterday. The yogurt was hard to get down. the day before i had 1-1/2 bottles of "Boost Plus"!

   It is just not enough!

   I have an appointment with my new primary doctor tomorrow ... and I'm beginning to think I may need to be in the hospital. I'll ask the new doctor tomorrow.

Rob & Gizmo

 

Posted 9/1/2014 3:42 PM (GMT 0)
Rob,

I hope you can find something that tastes good and helps you eat. I keep a variety of crackers, yougurt and ensure, anything to keep my husband going. He is having difficulties right now and I believe his stent needs to be replaced as well as another nephrostomy tube. He is feeling pressure on his kidneys and bleeding again. Such a roller coaster ride this journey is.

Rob, please keep us posted. You remain in my thoughts and prayers.

Cathy
Posted 9/1/2014 11:49 PM (GMT 0)
Watermelon is the best for tricky stomachs-cold, crisp, fresh, not greasy or heavy. I used to be able to get an ice cream place to put two raw eggs in a milkshake and that went down well too. Not sure if they would do that anymore-raw eggs and all. But very nourishing.
Cathy, you are having a rough time of things as well. It's too bad the Caretakers thread has disappeared. There were so many women there who needed some encouragement, like you and Sal. It's hard to do this alone. I hope you have family that can support you, or home care lined up.
Rob, do you have someone who can take you to the doctor? Is there any form of home care in the Chicago area? Our Canadian health system might get a bad rap now and then, but we do have access to free home care when needed and don't have to worry about our jobs when illness strikes. My elderly neighbour has a health care aid coming every morning for two hours to help her with chores, even though her husband is able and the daughter lives down the road.
Hugs and Best
Posted 9/3/2014 3:55 PM (GMT 0)
Rotb.....waiting on hearing what you are up to today..........

Getting anything down? Why not try Ensure Plus it has 350 calories......that's what I have and still give Ted...strawberry has been his favorite.

Just checking in on U........

Sal
Posted 9/4/2014 1:48 AM (GMT 0)
Sal, I hope that everything is all right with Rob as well. It's worrying when he lives alone and doesn't seem to have any one to count on. I wonder if he did go in the hospital.
You have your hands full as well, but you always make sure to let Rob know you are thinking of him. I think he posts on the depression forum here-perhaps they know how he is doing. I'm glad your husband has reacted well to the new drugs. But mostly, I'm glad he has you.
Posted 9/4/2014 4:43 AM (GMT 0)
Rob, if you're reading this we all are concerned about you. Please keep us updated and we can help. I have my hands full here at home but so concerned right now for you. All of us are. Sal, Beejane
Posted 9/4/2014 12:54 PM (GMT 0)
Rob checked in last on Tuesday morning, saying he had a doctor's appointment later in the day. He said his daughter was coming at the end of the week, so hopefully she is making sure Rob has some support. Family issues can get worse with late stage disease, contrary to what you think should happen.
It is disheartening to see the few posts that follow updates from the caretakers here, or Rob's helpful thread about his Jevtana journey. Dying doesn't offer many plot twists and turns like a soap opera so isn't very exciting. I know more members are concerned and sometimes it is hard the right words to say, since there isn't anything really we can do.
But we can say we care. Cathy and Sal, hope you keep posting and know that I know how difficult it is, even the feelings of not being able to do this anymore and hoping it ends soon.
Posted 9/4/2014 7:00 PM (GMT 0)
Rob,
I'm new to you but not to HW. I've been following your thread for a while now. Haven't seen a post in some time, as the other ladies have noted. You did mention the possibility of hospitalization so I hope thats the case and you're being cared for till you can get back on your feet.

Hope to see you back here soon.
Best to you & Gizzy
Susan
Posted 9/5/2014 9:59 PM (GMT 0)
Rob, I do hope things have picked up for you, I have been following your posts, which are very helpful. facts and figures are all very well but it is so much better to have information from real people.

Rob just really wanted to say thinking of you and Gizzy and to thank you for all the information you have posted on this site.
Posted 9/7/2014 10:31 PM (GMT 0)
Rob hass been posting on "Daily Check In Thread For All!!! #101" thread....I've copies and posted his posts........I was worried so went looking for any postings of his.....and found themmmmm
Posting of 09/02/12:
Good morning ....
Another short one!
It does seem that hydration has been my biggest problem the past few days - although 400 to 500-calories/day doesn't keep you going either. I'm glad I have the doctors appointment today - good timing!
Gizmo's been good. I'll miss my daughters birthday today - but I'll call her later. She's with her mother today.
Have a good tuesday.

Rob & Gizmo
Posting from 09/04/14:
Thanks all ..........
My mouse batteries died yesterday - so back today, although kinda short. My new primary doctor meeting was mostly good two days ago - except that my blood pressure was down to 90/60!
He wouldn't let me go until the blood pressure went up to at least 100. The staff found some granola bars with 150mg of sodium - and as he said, the sodium will increase the blood pressure - which it did in time!
So it was a long visit, then a blood draw before i left. I'm thinking that all of the diarrea I've been having may have drained some of the natural sodium in my body - and therefore, the very low BP ... and of course, not having enough water didn't help either.
The day of the doctor visit, my garage OH door spring broke along wiht the cables .... so my car was trapped in the garage until late yesterday. My neighbor bailed me out by driving me to the doctor.
Still feel very weak - hope to see my daughter tomorrow!
Almost a TGIF

Rob & Gizmo

Posted 09/06/14:
Good morning .......
Again, thanks all. Weakness is the name of the game right now. I did get a call from my new primary doctors office and the only things abnormal were my kidney test (known that for 2+ years) and my sodium level. Ah-ha!!!! It sounds like that's tying into my weakness and low BP readings.
Did pick-up some Gatorade (270mg of sodium in a 16oz bottle) two days ago ... and picked up my daughter from the local train station yesterday. Ten minutes after we got here, the electricity went out ... from a violent storm. I got her back in time for the early evening train ... and there was no power for 14-hours.
What a long night! Power came back on a 4:45am .... from 2.40pm the day before.
Hope everyone is OK.
Have a good week-end.

Rob & Gizmo
Posted 9/7/2014 10:56 PM (GMT 0)
Sal, thanks for finding Rob's posts!

Hope you and Ted are doing okay. Same to you Beejane and all.

Cathy
Posted 9/10/2014 5:13 PM (GMT 0)
Hello all ..........

   I can't thank you enough for all the care you've shown.

Some updates:

   I do have one daughter who lives about 40-miles away. For over 2-1/2 years now, I'm convinced she has kept a distance from me because she can't handle my downturn and eventual death.

   My other daughter is 1200-miles away. She's beginning to have that same problem, but at least she calls me every week.

   I have no brothers or sisters and the rest of the family is gone. I do have a very kind neighbor who I talk to weekly ... and she has picked up some food (Boost, watermelon and bottled water) for me a couple of times lately and also took me to the doctor last weeek.

   I have lost over 40-pounds in the past 4-months, but the total disgust of food started about two weeks ago. I'm very concerned about that and I've gotten very weak.

   I will be calling several housecleaning services today. The house needs a major cleaning .... then I need someone here at least once a week for that.

   I finally admitted to myself - that I need a part-time care-giver ..... shortly after the major housecleaning.

   On Friday, I'll meet with my Oncologist to determine the next course of action.

   Again, thank you all so much for caring. I'll try to keep this updated more often.

Peace and wellness

Rob & Gizmo

  

Posted 9/10/2014 7:40 PM (GMT 0)
Hi Rob,
Thanks so much for posting an update. It's hard to get to everything when you are not feeling well, and this forum is the least of your worries, so we understand where your priorities should be.
I don't know what happens to people when major illness strikes. Some people come out of the woodwork to be your best friend so they can get in on the drama. Others keep far away because then they can keep on with their pleasant lives and avoid upset. My husband's late wife's step-mother was in a nursing home when we were married, and any family that was left didn't visit her because they "wanted to remember her the way she had been." Nice of them, but not so nice for the poor woman who had few visitors except for her sort of son-in-law.
I hope your oncologist can help set you up with home care or some kind of support. You have done really well to keep up meals and housework and personal care through all your treatments. It's time to give someone else the joy of helping. What does your insurance or healthcare plan allow? They should be able to tailor a plan that suits you and gives you a break. Make use of whatever help is offered, whether shopping, or doing the laundry or personal care. They might be able to offer suggestions for appetite or hydration through their experience as well.
Thanks again for keeping us updated. We do care. You have been so helpful to those who are going to be following your guide to using Jevtana. As a pioneer of the treatment, it's probably those that are coming up behind you who are going to benefit. And it might be my husband, so thank you so much!!
Posted 9/10/2014 10:49 PM (GMT 0)
Rob....I have my ways of keeping up with my fellow PC "warrior" friends........so don't try to hide again, I will find you! LOL!

Yes, I believe it is the cancer that is getting "the best of you" right now. It was really taking Ted down........as I said before, we really were looking at the "grim reaper" straight in his eyes. Ted's new treatment, Xofigo/Radium223 has helped Ted tremendously. His pain has subsided, still having trouble sleeping on his sides, because his arms get to hurting after laying on them for about 30 minutes and of course, the forever ongoing fatigue issue. Appetite better, but he is also taking 2 tablespoons of Megestrol everyday, so it could be that or the new "treatment", whichever it is, I am truly grateful. See if your oncologist can set you up for Xofigo and give you a script for Megestrol (unless you are already taking it).

His breakfast's can range from pop-tarts, to Eggo waffles, to a half bagel with peanut butter (protein), to bologna & egg biscuits, along with some sort of fruit and juice. Depending on what he eats, that when I get the Ensure out. Like today, he ate pop-tarts, so 2 Ensure bottles, then for his lunch, he ate so Mongolian Beef with fried rice from a Chinese take out. Today was a good day, tomorrow may not be so good. He has lost about thirty pounds since our move here to Tennessee. He was over weight to start with,so he could lose it, but I never saw his bones so defined before, even his "port" is more noticeable.

Ted constantly apologizes for being fatigued and not wanting to do anything or go anywhere. Before this latest episode started, more than a year ago, we were RVing and on the go as much as possible. Sold our RV in March of 2013, and had stopped "camping" a few months prior to that, then the selling of our house and moving closer to "family". I know that if this disease had not "struck" Ted and probably every other PC warrior and "stopped them dead in their tracks", they would all be "on the go" and be the strong men they originally were. This is what I believe and what makes me continue to be strong for "my warrior".

Rob, check with your case worker, nurse practitioner about possible home health visits, meals on wheels. I also do understand about how family can kinda "shy away" from the possibility of losing a immediate family member. Both of our sons were in denial, until they actually saw how their dad was going down with this disease and now have been more attentive to him and me. It's a hard process to understand and to "watch" a loved one lose themselves within a disease.

I will also post this same message on the caregivers thread,although I haven't seen very much activity on that thread lately.

Rob, you can e-mail me at any time.....

Peace, Love and Hope to All.....

Sal
Posted 9/11/2014 8:44 PM (GMT 0)
Rob, Thanks so much for the update we all care about you and I concur with Beejane and Sally. It's good that you are looking into getting some help. I'm happy that the neighbor has helped you, but I think now you need a bit more. Sally is right she will be looking for you and find you too!

Much love to all,
Cathy
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