Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc.

Nhwife,
Let the tears flow out to make room for a peaceful and beautiful tomorrow.

Wishing you a day of fond memories, laughter and love.

Zimac

Susan, I hope your memorial is all you want it to be and more. As hard as these events are on us left behind, they also make us proud of our loved one.
I went and took cakes to my husbands oncologist today and his staff. it was good for my heart and soul. Going to our condo tomorrow,that will be much harder but I need to do it. The oncologist kept telling me to ride his horse, that will make you feel the best, I think he might be right..
Prayers for my friends ..

When we find an oncologist like this one and the one my husband had, some how it just makes the journey easier. It made me happy to read his words and how this had to make you feel his hug for you.
Same meeting with the staff that cared for Jim, their words made me understand that stopping treatment when he did was the right decision, and going back to CT was absolutely the best decision we made. I am positive there are more doctors out there like this, we need to hear for others that get through their journey with these kind and caring individuals.
So happy you were comforted by so many loved ones. Bad days will still come but they may not hurt so much and last as long with these wonderful memories...

Hello all......well I'm a little depressed, I am sure my husband is too! We both know and understand our disease but just hate it's constant up"s and down's, high's and low's. One day your doing so-so and the next your down in the dumps because of "those numbers". Well as this signature allows...the latest PSA says it all, again. Failing Xtandi & previous taxotere. Oncologist appointment today, and he wants to do a bone scan ASAP and then if positive, start Jevtana immediately. Did not give the number of treatments, but as I continue reading about this drug, I am a little (really, a lot) afraid of it, the side effects and allergic reactions are quite worrisome and scarey. I asked oncologist about Zytiga, but he didn't think that it would be the right way to go. Don't know folks, wondering if husband should go through this ordeal to just have another year and fail again with high PSA readings. Husband is mobile and doing fairly well, considering his stage of disease. Pain levels are tolerable with a low dosage of lortab's. It has to be growth in the bone's again, because September CT did not show any more growth of the lesions in the lungs or kidneys.

I posted another topic this evening, asking about Jevtana, side effects, did it help with lowering the "numbers"....but as of right now....had several views, but no reply's.....don't see anything about this drug on the Cancer Forum either......

I answered Sal on the other thread.
LuAn, so sorry for all of this grief. I can't imagine having so much to endure. It's enough to have to deal with the grief for my husband.
I do remember that when my father died 4 years ago, my husband's wife was dying of pancreatic cancer. The services for the two happened in May of 2010, one week apart. My whole family was reeling with the two.
Wish I could offer words which would take away the pain and sadness, but I can't. Do hang in there. I offer my virtual shoulder to you.

Jitters, so much grief and sorrow to take on for you. I'm so sorry.
Sending prayers your way.

A good update to report for a change. Not sure if taking Bob off the Casodex is doing this, but he has been doing much better over the last week or so. His appetite has increased, and he has gained 4 pounds back. We have been walking a little, and he is stretching and even exercising a bit. Needless to say, it has been a relief and a blessing. It has also helped to remember that this disease is like being on a roller coaster.

Susan

Can't believe how many posts I've missed while on vacation. Still on the road, but heading back to FL this week. Hope to miss the really cold (for a FL lady) weather headed to NJ.
All of your words are from your hearts, almost feel like I'm hearing each of you speak.
Jitters - LuAn- you wished heaven had Skype. I think it does, except it works better from the heaven side. And more sad days for you when still so close to your husband's passing.
Nhwife, how fortunate you were to have an oncology team that so respected "Mr.B" and so many hugs you could almost feel then after everyone left.
Tednsal, PSA rising, scans for soft tissue OK, same with Mark. Could have new scans in Nov, but his pain is manageable, appetite OK, energy not great but stable. So what's causing the PSA rise? Mark has lost so much weight, oncologist said he did not want to go to Jevtana. When is it time to say stop the treatment and enjoy the QOL that you have? Tough question for anyone at this stage.

I posted on back from vacation thread that being on vacation for us almost seems like a vacation from cancer. We have felt this in the past, when we took off in late summer or early fall, and this year more for me I think. We are staying with my daughter and if I go out with friends or family in the area I am more relaxed knowing someone is at home with Mark. This is the first trip when he's not able to do very much and I'm happy to have some support. We did have a couple of nice afternoons sitting on the boardwalk, drinking coffee, watching the surf and tide coming in.

Going to read through the other posts and new blogs on this lovely sunny Sunday morning. Hugs to all.
Pat

Sorry, just checked in yesterday ..... so much so many thoughts. I really don't remember when I last posted - I could check, but just getting energy back, just know I have thought of all of you; those of us who have lost and those still battling are in my thoughts and prayers. I apologize for not being here to support and listen.
For my birthday, 9/12, was in the hospital for 4 days after serious kidney stone attack, kidney infection, UTI.put stent in.then two Fridays in a row was back in for procedures. I don't know if it was all the times going under, the infections, or what; but I was very weak, extremely shaky and out of balance. Still worked on all the business stuff, but had to hold my hand to sign all the many papers. Still working on all that but the majority is done.....I hope.
We did "celebrate" his birthday on October 10th. Went to cemetery with Asia's little sisters, actually at the 7 year olds suggestion. We all wrote notes on balloons and sent them up. We then went to a German restaurant - a favorite type of food from his youth and being stationed in Germany with the rest of the family except son in Atlanta - he does like Mexican too, but didn't have that until an adult.
Made it amazingly to Hawaii last week - my cousin shares Mike's birthday. Hadn't been without pain in back, didn't think I could sit for all the flying; but miracles happen and I couldn't work on issues on plane. Had to pace myself, but even went snorkeling a couple times - once with huge turtles. Dr. said it may take up to 3 months to regain strength, but it think I will beat that timeline.

I am in a 8 week structured grief group. It helps because you aren't allowed to respond to others or hug them while they're talking. Good but hard for me.
Then may try their grief support group. Haven't really faced reality too much. When I got home from trip, that was hard....he wasn't here and isn't going to be. Really hard!!

Have thought of you all. Take care.

Jevtana was mentioned. For Mike much easier than Taxotere. Hot flashes were much worse and started losing hair again, but the rest was better. Everyone is so different though and it didn't stop the progression, but I think we were beyond that.

So sorry I haven't posted. Have been having a terrible time getting on the website.
So sorry for all the sad news and all the lives lost. Loved the letter from the oncologist. What kind words and to think he took the time to share them, WOW!
We were in for my husband's monthly visit yesterday. His PSA went from .19 to .22. He aches most of the time now and has recently been having a lot of pain in the area of his left kidney. Will be interesting to see if anything shows up in his blood work. He didn't say anything to the doctor about it. I think he figures the doctor would say it is nothing, just a new ache. His 13th month of Xtandi just arrived, so at least it seems to be working, even if he feels miserable. Feel sorry for him.
Thinking about all of you, especially as the nights grow longer and so many are now alone. This disease is no fun but I personally am glad I am here to help my husband on his journey.
Wishing everyone a wonderful weekend.

Dreamers44, well said and great that you recognize that in each other.

It's been over two months and reality is hitting hard at times. Of course didn't have energy to do much in past and this week been working on his clothes in our bedroom closet. Really didn't expect the flood of emotions. I've have been working with banks, investments, credit card companies, insurance companies, billing entities, etc for the last two months and been fine while doing it. It feels like a very alone time. I know it will come and go, but this week has seen more tears than all the time since he died.

Take care all of you. At least for those still fighting, it is a journey together. For those of us who have lost, at least we had each other for the journey.

Passages, Jane,
it sounds like the business end was easier for you, banks, credit cards, investments, but now you have to go through all of the personal pieces of his life. I can imagine that touching, seeing, smelling some of the personal stuff can flood you with memories and I think the tears somehow help to cleanse your pain a little at a time.

Sal, We are right behind you. Blood work next week, then oncol, 3 month scans before Thanksgiving. Don't think the Zytiga is doing much, with more bone pain, higher oxy doses, and now low grade fever. Lots of anxiety for both of us now, hoping for another PSA buster, but not expecting it. Is there a time to stop taking PSA tests? Does it matter if it's 500 or 1000? Reading posts from guys getting their PSA updates who have wonderfully low values and remembering those earlier years when we watched it go from 2 to 5 to 10 and back down when he'd get a Lupron shot. Hoping you had some good news yesterday, but know how you are feeling before the results.

Keeping everyone in my prayers.
Pat

Hello all....good to see some of you all posting, some comments are emotional, some are well wishes, and others are advising their status while traveling down this path. All are welcomed and read thoroughly by all who visit HW.....you all help me survive these days and nights.....

I posted (maybe to long of a post) on Grizz'n me's thread of "My journey with Jevtana". Rob's information has been so valuable to me and I so much do appreciate his taking the time to be to intricate and descriptive in his remarks concerning his therapy with Jevtana and it's SE. He gave me a "heads up" on what to semi-expect regarding the possible SE and so I am somewhat aware of what husband "might" have to tolerate while along this path.

So now to our appointment (same posting as on the one mentioned above). Saw doctor prior to infusion & was advised that the bone scan had "moderate growth". Stopped Xtandi and will start Jevtana on this date.
Asked several questions:
How many sessions: 4 one every three weeks
Do we continue the HT (Trelstar every 84 days) & monthly Xgeva injections: yes
What's next: Advised if PSA goes down, maintenance (lower dosage monthly - shucks!) or possibly Zytiga. Asked about "a rest" from everything......doctor didn't respond.
Ted has not been able to get a good night's sleep in several weeks, shoulder and back pain. Lortab helps for a short time, but the Aleve helps longer. Advised PA prior to doctor coming in, she said that is not good (on kidneys). Suggested the fentanyl patch (25mcg). Doctor agreed. Ted thinks that he is going to become a "drug addict"..........wouldn't take the patch, but when 11 o'clock came around and he still couldn't sleep, we got the box and the instructions out on how to use. He still did not sleep well, neck and back hurt. Felt like he had a crick in his neck, couldn't lay his neck in any particular spot, comfortably. Gave him a lortab and eventually his back eased but neck never stopped hurting. He slept about one two hour time.
Next day (today (Thursday), he ate breakfast, frozen waffle (what he wanted), 4 strips of bacon, fruit bowl (cantaloupe, watermelon, honey dew & kiwi), orange juice & coffee. He was up at 5.....
Lunch: Not much of an appetite, but ate a deviled ham sandwich with a piece of Hawaiian cake I made for his desert. Supper: can of Campbell's New Home Made Chicken Noodle soup. Ted was tired but since he had pain was not able to rest....feel asleep in recliner, woke him up at 8 and put him to bed with a lortab. Will see how he is tomorrow (Friday)

I plan on adding a Zofran pill to his morning and afternoon/night pills, will do this for about three days after. I did this when he was on taxotere and he was never nauseous. Doctor says I over-medicate....husband never got sick before, so I will continue to do this process.

I was concerned and a little upset about the prescriptions: I knew from that last time, we needed Zofran (8mg), Compazine(10mg) and Prednisone(5mg), however, no one from the doctor's office called these in prior to our scheduled therapy visit. So I started calling a few days ahead of our scheduled visit, and leaving messages about the need for these scripts.....well, never got the Prednisone or the Companzine in advance (had some left from previous treatment (just in case). Now really, who wants to go to the drug store after spending four hours getting chemotherapy? Unless you are a glutton for punishment, no one that could have this accomplished beforehand, so this was my point. (We have to be pro-active as caregivers).

Next appointment is on November 21st.

One other thing that I failed to mention in the Jevtana thread.....no grapefruit while on Jevtana, not in fruit or in juice. Husband loves this and I gave it to him every morning while he was on Xtandi. There was no mention of it in any of the pages we had received and newsletters from Astellas. Don't remember seeing anything about grapefruit while on taxotere either.

Faithful (Sally)