Update on my husband tall Paul (Palanon)

Hi everyone! I have been lurking a bit here lately and not much time to write anything but reading with interest.

He had his Lupron shot week before last starting Casodex same day. Tuesday will be day 14 and last day of Casodex but I want to ask if he can stay on it.

Paul had his FDG scan which showed possible involvement in some lymph nodes from his groin area to mid neck but nothing conclusive to date as uptake was minimal at best.

We received the second opinion from Bostwick regarding the prostate biopsies and tumor was graded 3+4 with underlying 5% Gleason pattern 5 in all samples. Nothing too new here.

Consult with Pulmonary was Wednesday and again nothing conclusive but MD did say he is pretty certain those are mets in his lungs. He suggested a biopsy either by bronchoscope or open surgery (preferred method) but honestly Paul doesn't want that and still may not be diagnostic. It won't change anything regarding treatment either. The mets are small (under 10 mm) and are everywhere and there are more than 60 throughout. Its nothing else, that's for sure.

We don't think we will back to see him as he seemed taken aback when I said that so far this has been a real hardship and difficult with him not working due to how he has been feeling (and probable not starting anytime soon) and that the added expenses are creating a financial hardship. I don't see why anyone would be bothered by us speaking the truth as I don't know anyone who has been affected by cancer that hasn't faced some sort of financial burden! I was being completely honest and frank about that. I make decent money being a nurse but with one person working, the expense of relocation and other obligations its difficult to be the only moneymaker. We aren't starving but we are watching finances closely and its a worry as we are averaging 1-200$ each week in various copays and medical expenses. Living paycheck to paycheck sucks.

His chemo starts Monday- taxotere first thing in the am- hoping all goes well there, I took day off to be with him in case he has any reactions. Also Thursday afternoon we go to see palliative care for a 90 min consult. I spoke with their nurse at length the other day and I think they can really help us both in many ways. I am concerned with how down Paul is at times and his emotional wellbeing. Within 2 days of his Lupron injection he went through some emotional rollercoasters with raging about stupid stuff and being very depressed. Not sure if Lupron had anything to do with it, but its seemed to have subsided now. I wonder if he did have a spike in his testosterone....

He also has 3 fractured ribs that lit up on the PET scan and were seen on the CT scan! Not sure if I mentioned he got into a small bike wreck just before the wedding on June 13. The pain hadn't let up in his rib area and we suspected this but didn't feel need for confirmation since he was going to have that study anyhow and has pain meds avail.

On a good note- my godfather drove all our things here from NH to GA in a 26 foot rented truck. The house is FULL now and there are paths from room to room! We have been slowly unpacking today and it will take us a while to be settled but this is great as its been in storage for 6 months and some things I forgot about having! The down side, my clothes that were packed don't lie- I gained a ton of weight myself and need to start taking care of that and my own health needs too. With the lupus and autoimmune disease any added weight is a risk and one I don't want. So we are eating healthier slowly changing our diets.

I know I am horrible wife- I am actually looking forward to Paul taking the Dexamethasone starting tomorrow (for his chemo) and all the energy he will have so that the unpacking will get done faster!! I also suggested he let me shave him- chest, back, head, etc... so that he doesn't start shedding about the house and increase the vacuuming we need to do!! :)

How many on Taxotere took prednisone 5 mg twice daily between treatments? Is there anything I can do to prepare for this and make it more comfortable for him such as things to have on hand, etc....

Take care everyone!

Krissy

Glad to hear you are finally feeling better now Jack. Would love to get together soon for sure and try one of these good restaurants around here we keep hearing about with some good company!

I just looked up that CanCare. Sounds like a good thing, but no info found on local meetings. I will talk to Paul, maybe you can both go together? Looks like something I would like to be involved in as well- maybe even volunteer with them. This also sounds like something I could pass along to some of my patients at work as some come in to get their injections.

Today we have a children's birthday party to go to for a co worker which will give us break from the mess of this place. It's literally paths from room to room, climbing over things! Things were not put in the rooms they belong in but least its all here and that feels good! Now if I could only find the box with my summer shoes for the party today....

Thanks for the update. I've followed your posts and haven't had to experience what you are going through. I can only add what a great advocate you are. You seen tenacious and it seems to have paid off.

LOL Peter! Bald is attractive so maybe that's it? That is a strange side effect, as don't most men lose hair? What kind of ADT are you on?

I know MsWorry's husband kept his eyebrows! I think Paul just really needs to lose his neck, ear and nose hair...in the shower, not somewhere in the house!!! Maybe some thinning in the brows, too!! :) He actually gave himself a buzz cut when he was up in NH all alone feeling horrid and sick from infection right after the diagnosis. Wanted to do it on his terms. Buzzed looked horrible until it grew out some,but I think bald will be nice. He really looks good in very short hair and I wish he would keep it that way afterwards. Even bald... I have always liked that look.

Paul did great today- and they messed up, he takes steroids through tomorrow then a break until day before next round (for 3 days total). He also starts the neupogen tomorrow for 3 days, not on the third day.... They had it wrong on his paperwork before the infusion. Glad we got that cleared up.... I think the steroids are actually helping with the pain he has been having as well. Not as much abdominal and back pain- nearly none according to him. Makes me wish they would keep him on the 5 mg prednisone twice daily for the duration.... Not sure why they aren't.... Something about a new protocol I think but haven't had time to look it up.

BTW we got A LOT of unpacking done today, but I think I did more than him. I had to get the bedroom put together and looking comfy for sleeping. My clothes are hanging but not in any order- that can be sorted later. I also realized I am a shoe glutton and have way too many despite getting rid of a bunch before we packed up the house in NH. They are in a pile in my closet at the moment, a heap would be more accurate.

The one downside is all the mirrors in the bedroom now show me just how much weight I gained- ewwwww. I think its time to get the bike tuned up and start pedaling my butt the 3 miles to work for a while and begin those daily walks with Paul when I get home from work. I have some work ahead of me!

Still lots to do here but back to work for me tomorrow.... I bet I will be sore from all I have done. This lupus sucks for that but I will push through it as I always do.

Ohohoh.... good news--- we found a doc at Emory for a second opinion (insurance covers this one) through the generous assistance of Tall Allen. He recommended getting in touch with David Schuster at Emory regarding his research. He doesn't have anything that fits Paul at the moment but he recommended Dr Omer Kucuk. He is a Turkish doctor with an impressive resume and very active in research. I will be spending some time reading his works (both docs actually) and setting up a consult for Paul in the future. Can't hurt...

Hope everyone is staying cool in this heat parts of the country are experiencing. I think I am in love with central air!

Stay cool, be healthy and be happy, too!

Krissy

You are right! I read ADT and in my head heard chemo.... I think brain overload, or maybe just because I was blond as a child!! It was after midnight and I think I was over tired....I catch myself mixing words spoken but interestingly this I did as words read and written... A new level of pleasantly confused for me think!

I knew some about the inheritance pattern but not even close to that much- you summed it up so well in a few short sentences. I have also heard that many men with baldness actually have higher testosterone than average.

Did you know they have a cooling cap to protect your head and hair from the effects of the chemo? I think the premise is that by cooling the scalp, it constricts the blood cells therefore preventing some flow of the chemo to the area and hence preventing the hair loss... I will try to look it up later.

http://www.rxlist.com/decadron-side-effects-drug-center.htm : "Side effects of Decadron(dexamethasone) may include GI symptoms (nausea, vomiting), headache, acne or skin rash, increased hair growth, irregular menstrual periods, easy bruising, and anxiety, or depression......trouble sleeping, increased appetite, or weight gain"

I used to give a lot of Decadron ( one time IV injections) during anesthesia especially for ENT surgery like tonsils for kids. For one thing we felt it decreased airway swelling but the other is that it was just known as a major feel good and anti-nausea drug, at least for short term use.

But one time a bad respiratory thing was making it's way through the entire OR group, and I was offered a shot of the above drugs cousin Celestone(BETAmethasone rather than Dexa) as I was leaving in the afternoon. I had a 55 min drive home and then back again early the next morning. I started feeling better pretty soon. By bedtime, I was not sleepy. I got up wide awake at 3 AM in a panic, wondering what I was going to do about work. If I didn't make it to work, an OR closed and 1/2 dozen folks would not get their surgery! But I was terrified I would become overwhelmed with fatigue mid day. By 0700 I was still wide awake, but not tired. I got to work and warned folks to keep an eye on me in case I became unsafe. But to my utter amazement I worked through the entire day feeling just fine, maybe with more energy than normal. I drove home, had supper and watched some TV, and maybe about 8 PM just totally crashed. I had completely skipped a nights rest- not even 10 mins of sleep- and showed no ill effects until a few hours before the next normal bedtime bedtime.

I'm don't know if decadron will have that kind of effect or not, but you might have to have some work for him to do!