MDV3100 Journey - updated with first follow up visit

Nhwife, that is very good news about the PSA. Stable, as we are always told, is a good thing. Good luck with the stent replacement next week.

Bud, how dare you not pay strict attention to our famous Gigi?
Glad you put the paper down and realized what a treasure you had sitting there with you. You're a Radgranddad!

CC, Glad things are going well for you and your husband.

Zimac

Bud, your famous Gigi indeed! I didn't know her full story but no wonder she is so precious to you. What an incredible start to life. I'm glad everything is going well for her and hope it always will! She does indeed have a radgranddad!

nhwife

Boring is GREAT!!

Be confident, these days will continue for a loooooooooooooooooonnggggg time! HUGS!

Same here, hoping C.C's hubby is doing terrific.

Latest on Gigi – laughs – ok so I can’t resist! Her doctor said its time for her to go onto spoon fed baby food. (using rice meal as a start). We were over there yesterday and our daughter, Gigi’s Mom, was instructing us on how to do this. I was holding Gigi in my lap as her Mom tried to spoon feed her. Turned out to be very messy as the majority of the spoon fed food dribbled down Gigi’s chin, and than she grabbed the spoon and would not let go, when her Mom got the spoon from her as was distracted, Gigi grabbed the cup with the ‘food’, GrandPa’s leg got coated with the ‘food’. How much food actually made it into her tummy? I expect very little. Good times! Maybe tomorrow Grandma and GrandPa will do better with this task. Laughs!

HUGS!!

Bud

We will beat this crap!

Loving those boring days. Keep them coming. I too am following you and cc closely.

Bud, No food for Gigi only Grandpas lap. I'm sure Gigi will teach you how to feed her the way she wants. You're a lucky man Bud. She's a beauty.

Hubby is having his experimental therapy as I am writing. We are starting with a PSA of 40 so we will see where it goes. Always looking to join the Zero club but their restrictions are tough. Maybe someday. I still hate Pca!

Zimac

nhwife,
i am sooo glad things are going good and boring for you lol it has to be a very good thing cause here things are not so good I have been on the phone wednesday thursday and friday with ctca and the researcher in charge of the mdv3100 trial my husbands pain has increased 10 fold we are constantly fighting constipation he has no energy and sleep most of the day the last 2 days his appetite has dropped and refuses all protein drinks and his favorite foods, unfortunately ctca hasnt been much help I have done everything that can be done for now and to just watch out for fevers or seizures his gp saw him friday no infection which is awesome but he is still concerned with the other problem will let you all know what we find out come monday

Best wishes and lots of hugs
c.c

c.c.--Sorry to hear of your ordeal. Remember that opiates often "cause" severe constipation and a laxative is in order to ease the suffering. (I know, the hard way---after starting an opiate regimen to stave off bone-met pain I had a "fecal impaction" that had to be DUG out laboriously. I will spare everyone the details!). I am wiser now!!

Best wishes.

nhwife

I have my pills to take (Zytiga and Predisone 2x a day), my wife has hers for her diabetes - she takes some in the morning and some at dinner.

What we did is to buy the 7 day AM - PM pill box. One for me and one for her. Both pill boxes stay on the kitchen table.

Helps a lot to make sure we both take our meds.

Ok will not mention GFMPH any more, until the next one:)

Hugs

Bud

We will beat this crap!

c.c.
Don't know if you have any interest in this but I will throw it out there. My husband uses a natural supplement called Turkey Rhubarb for constipation from the pain meds. I tell everyone who suffers from constipation about them. My own GP takes them and recommends them to his patients. Really works without the cramping. Whenever my husband takes an Oxycodone I give him some turkey rhubarb.

I'm so sorry about the bad days. Sending you prayers for better days.

Nhwife, So happy to hear things are still quiet with no SE's. Yes, we will and MUST beat this crap!

How about setting your cell phone alarms when it's time for meds?

Sequoiaranger - Thanks for sparing us the details on the fecal impaction. LOL!

Good days for all!

Zimac

nhwife,
Is this his first time having the stent replaced? I had a stent removed after my kidney surgery. I worked myself up and it was really a piece of cake. Although replacing a stent is more difficult.
I hope everything goes smoothly next Monday.

We had a much better day today. Life is getting better.

Zimac

Yes, we will beat this crap.

Zimac, this is his third or fourth stent. There was a lymph node tumor wrapped around the ureter and the kidney was in danger of shutting down. The way it was explained to us, once the stent is in, there isn't going back. It needs to be replaced once a year. Of course, if the tumor goes away.....we don't know. Anyway, it has become routine. Not fun but routine.
Aimzee, thank you for your wishes especially with all that is on your plate. Hoping for better days for you and Ron.
Still no SEs. There are these little spots that appear and then disappear on his hands. I kind of think they are related to some scrapes he had but we will mention them as a curiousity.
So he is doing well thus far on the MDV3100. I don't know if this is unique or not. I know C.C.s husband is still having a rough time and hope that smooths out.
We will fight on and beat this crap!

The stent was replaced today and all seems well so far. A smidge of discomfort but nothing remarkable. It was a really quick procedure - he was home by 10:00 AM!
Tomorrow we are off to Concord for our first follow up on the MDV3100. I don't really know what will happen. We need to bring pill bottle and record sheet of when he took the pills. Also if there were any SEs. It should be a fairly quick visit.
I don't think we'll know PSA. There was a scan done a while ago which we never got results on so we'll want that.
Otherwise, still somewhat boring!
Thanks, Bud, for your thoughts. I do try to take care of myself!
Definitely feeling like we can beat this crap!
Hope husbands of C.C. and Zimac are doing OK. And of course all of you!

Zimac, good to hear from you but hoping the news gets better for you.
I spoke too soon. My husband has some pain and he isn't getting a good flow for pee. We were up last night for a few hours but did not go to the ER. Off to the urologist's this am to see what can be done - a catheter?
Need to call Concord and see how that all fits in.
It will all work out but it's definitely not boring right now. Hate to see him in any pain or discomfort.
Will update later.
UPDATE: things seem to have resolved; we are off to Concord! What at trip this is.

Post Edited (nhwife) : 8/14/2012 6:41:22 AM (GMT-6)