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Posted 9/22/2013 3:31 PM (GMT 0)
Please use the continuation thread (--Here--) to continue the conversation.

This thread is a continuation of the discussions started on a thread entitled "Xtandi side effects, results, etc (continued)" which was itself a continuation. There is a limitation of the forum software that causes threads to sometimes become unreadable if they run much more than ten pages so when a thread runs that long a moderator will lock the thread and link it to a continuation thread so the discussion can continue.

I've changed the title slightly since the "etc." in the original thread seemed to have become the most valuable part of what had become a great support thread.

You can always find a link to this thread (and its various continuation threads) on the sticky "Long-Running Threads and Prostate Cancer Abbreviations" thread.
Posted 9/22/2013 4:58 PM (GMT 0)
Peter DisA, Passages, Beejane, Silverlace, read your recents on the Xtandi thread and thank you Peter for separating the threads. See more updates under the Caregivers thread.

Would the Women Warriors & Caregivers focus on one thread and it will keep it up front with all of our posts?

All, if you have not seen the video that Passages posted on the other thread, it is a beautiful story of their journey, family, lots of personal stuff, made me feel like part of the family and tears like a waterfall down my cheeks. I was surprised how easy, just click on the link and copy it on the internet bar. Much easier on my computer than I pad.

Pat
Posted 9/23/2013 3:39 AM (GMT 0)
Thanks PeterDisAbelard....combining the threads may be the best idea, however, this one may get over the allocated pages as well. We "Warriors" need that constant nurturing and feedback for our emotional state as well as for the informational value this forum gives to us. All of us, past, present and future (I hate that we will have future attendees) utilize his venue and it holds a "special place" for us to come to. So many have "fallen", just as so many are still on this journey, hoping beyond expectations that a cure will be found and all lives will be extended.......endurance.......perseverance......hope.....that is what we need and strive for.......

So all of you who have been following on the Xtandi and Caregivers thread, maybe we can all use this one to relay our thoughts, ideas and feelings to help one another.

I just red a posting from Silverlace49, she has had a long year (nearly) her fallen "soldier" (Jerry) has gone to a better place. She said that one of the hardest thing she misses, is "sharing" those special moments of accomplishments, remembering those "special" together "things"....you want to say something, but there is no one there to talk to or reminisce with. Those are some of the "hard steps" to climb......I tear up just thinking about having to go thru that stage......don't know if I can or could.

Results from the CT...said he was "stable" whatever that means. Cyst on left kidney worrisome and wants him to go back to urologist...he won't, tired of doctor appointment's. Not sleeping through the night, given a script for sleeping pills, said that could be why more fatigue, not getting into that "sleeping zone" that will have your body rest. Latest Xgeve injection has given him fits, shoulders and upper arms aching last four days. Lortabs not taking the ache away, took Aleve...helped immensely, can only take one a day because these are rougher on the liver and kidneys. He's just tired of this journey.........and pills, pills and more pills........

Okay all....new week....onward we march.....Dreamer44, smo1, Radsgrrl22, enjoylife and my dear ones: nhwife( Susan), Passages (Jane), jitters99 (LuAn), Silverlace, and Bjemo (Barb)..........press on girls, even though you are crying...

"If Tears Could Build A Stairway"

If tears could build a stairway, and memories a lane.
I would walk right up to Heaven and bring you back again.

No farewell words were spoken, No time to say "Goodbye".
You were gone before I knew it, and only God knows why.

My heart still aches with sadness, and secret tears still flow.
What it meant to love you - No one can ever know.

But now I know you want me to mourn for you no more;
To remember all the happy times life still has much in store.

Since you'll never be forgotten, I pledge to you today~
A hollowed place within my heart is where you'll always stay.

Author: Unknown

No signature this time...love & hugs to all...........
Posted 9/23/2013 8:19 PM (GMT 0)
Passages, hope your recovery is fast and all of those medical issues resolved. Sounds like a good grief program and please continue to share what you learn. I'm one of the "busy" ladies and it keeps me from dwelling on the negatives for now.

Tednsal, I think our soldiers are about at the same point. After chatting with oncol last week and seeing the PSA doubling, he was really down. He will finish this months supply of zytiga and then see if the rise was due to new meds. There are a 2 possible clinical trials within driving distance but he does not want to apply. He had a stroke in August, and that could eliminate from almost all trials. Compared to a lot of the soldiers, Mark is very comfortable, although sleeping more and foot swelling. I feel him slipping slowly. Cloudy, rainy day here mirrors my mood. You sound like you have rebounded after your Post on the other thread and are ready to fight on. Like our guys, we have a few down days but don't linger there. Thanks for posting the poem. My daughter used the the first 4 lines for my grandson's memorial card. Beautiful sentiment!
Pat
Posted 9/23/2013 8:54 PM (GMT 0)
Hi tednsal, great post, loved it and stable news is good news to me. Passages, loved the video, nhwife, dreamer, zimac and all, prayers and thoughts sent your way.

I’ve got a question to ask, has anyone experienced their PC warrior to urinate blood and blood clots for a significant time? Mine self caths, and at times it is not good. He blames it on the warfarin (Coumadin) which is a blood thinner because while in the hospital he had a pulmonary embolism. One of the doctors is recommending that he should be scoped, but he does not want to do it. Just wondered if any of you had similar experiences?

Thanks,
Cathy
Posted 9/23/2013 9:21 PM (GMT 0)
enjoylife....husband was urinating blood a few years back. Urologist tried to scope at the office...had to sent him to out patient hospital for a cystoscopy...he had a blockage and had to be opened up a little. Not catheterized, but has incontinence issues.
Posted 9/24/2013 12:11 AM (GMT 0)
enjoylife, The bleeding could be anything from infection to ......Mark had intermittent bleeding at first treated by the urol as infection, which was confirmed by urine test. After 10 days on antibiotics, he started bleeding again and also had clots. Urol did culture, never suggested cystoscope. Culture was positive so she did another 10 days of antibiotics. He went for his regular oncol visit and showed the doc pictures of the clots. Oncol said go back to Urol for treatment but also did a culture which was still positive for infection. Getting worse, finally got referral to new urol and he took one look at the pictures and scheduled Mark for outpatient cystoscope. Bad news, GL 10 met PC throughout the bladder and blocking the ureters, stopping flow of urine from kidneys. Cleaned it out, had interventional radiologist insert stent and also kidney drain that he had for almost 3 mo. He was lucky. He was able to have the stent and the kidney drain removed which was good because he then had MRSA in his urinary tract. Please be aggressive in following up with this, and good to hear his doc wanted to do O/P procedure. Just another bad doctor story, but this one hit home.
Pat
Posted 9/24/2013 5:29 PM (GMT 0)
Hi Everyone, I have only occasionally been following these threads for the last little while. I am so sorry to hear of all the losses. My heart goes out to you all.

I was living in Lala land there for a little while. John started on Xtandi in June and for awhile was doing very well...feeling good and having much more energy. Life felt almost normal. He could do so much more. Unfortunately now his PSA is up for a second time.

John saw the oncologist/Fellow a week last Friday after blood work was done. She said "they" were not really all that concerned about the rise in PSA...that they needed to see the scans (now done) to determine if/what progression. No change in treatment plan at the moment.

"They" felt that it was more important that John continues to feel well. No aches or pains that can be directly attributed to cancer. John was in a very positive mood. Fellow checked little blob near groin and she too felt it was likely a fatty lipoma. Sore spot on chest likely from stretches he did. But any sore spots on bones that correspond to hot spots on bone scan should like be radiated.

Anyway, they look more at how the person is feeling/doing and other blood work which is good at this stage. They say it is not useful to attach too much importance to the PSA number. They are not sure if it is same number of cancer cells producing more PSA or that there are more cancer cells.

Recent history:
Apr 11/13 - 539 - then had 3 chemo - Apr 15, May 6, May 27,
May 13/13 - 399
June 13/13 - 347 - after third chemo - started Xtandi - weaning off Prednisone
July 11/13 - 126
Aug 29 - 187
Sep 11 - 251 Had Lupron shot. Continues on Xtandi

He has an app't on this Friday, Sept 27 with oncologist again.

Other than PSA, John's blood work was really quite good. They had been concerned last time that creatinine was creeping up but now creatinine levels have settled back down. They had asked last visit if his water consumption was down. Likely as he drinks very little IMO. He's trying to drink more now.

Another sign of Xtandi not working is that John is now bleeding a lot into the bladder. He is on an injectable blood thinner which contributes to the bleeding. He has nephrostomy tubes into his kidneys because of blocked or partially blocked ureters but there is a Hobbs catheter on one side that goes down into the bladder. That can irritate the bladder and may be the cause of the bleeding. Fingers crossed. He will have that changed and the Hobbs part removed this Thursday. He can feel the Hobbs catheter when stooping or sitting.

I was almost ready to take him down to Emerge last night at bedtime when I saw the amount of blood in the bag but knew nothing would likely be done before morning. It was much less this morning as he predicted. He cut the lawn yesterday and was sitting alot too and guess both are irritating.

John had ongoing bleeding in bladder earlier and that disappeared with the chemo and Xtandi. I think the bleeding now is not a good sign. It mainly happens with sitting and stooping and he can feel the tube in his bladder. Very uncomfortable. Hopefully that is it but I am not counting on it.

Life has been very busy for me too. Good busy as I am very involved with lives of my children and grandchildren. That helps keep my spirits up.

I really appreciate the caregivers here expressing their thoughts about their journey as I am on that path too unfortunately. I too have never lived alone. I had room mates while in university and for a couple of years of teaching before getting married. I now live in the middle of a big city - Toronto - but have few friends or even acquaintances here as we moved here 4 years ago. I do have 2 children plus grandchildren in the city but they are both a half hour or more away. I thought of moving closer to one but think now that the window of opportunity has passed. Too much stress would be added when I already feel stressed.

I expect that John may go on Xytiga next depending what the scans done this week show. Oncologist was not very positive about chances that it would work. We too are running out of options.

Ann

Dx: 1999
Brachytherapy in Seattle: 2000 Gleason was 3 + 3
treatment with Prostasol, an herbal for years
2011 - PSA started to rise - @7
2012 - tried various drugs ie Lupron, Casodex, Flutamide, Avodart - PSA continues to rise
May 2012 - nephrostomy tubes put in PSA: 19
Nov 2012 - began prednsione
Dec 2012 - 1st Degarelix
Feb 26/13 - PSA 350 - started Ketoconazole
Mar 14/13 - PSA 425 - stopped keto because of rise
bone and CT scans showed progression
Apr 11/13 - 539 - then had 3 chemo - Apr 15, May 6, May 27,
May 13/13 - 399
June 13/13 - 347 - after third chemo - started Xtandi - weaning off Prednisone
July 11/13 - 126
Aug 29 - 187
Sep 11 - 251 Had Lupron shot. Continues on Xtandi
Sep 27 - next appointment with oncologist
Posted 9/24/2013 5:33 PM (GMT 0)
Tednsal, thanks for your insight, I have a feeling he will have to have something done.

Dreamer, (Pat) Eye opener and confirms it for me. Mark’s experience sounds very similar. For years now mine has had an infection, and went on and off cipro antibiotic. Now it is definitely something more. Our main doctor, whom we will see on Friday, has pushed him to see the urologist for scoping, but again my husband doesn’t want to do it. I think on Friday he will hopefully change his mind. The Oncologist just does whatever pleases my husband, sometimes that frustrates me, but I understand why he does it. I will talk to the doctor this Friday and hopefully we can get into his Urologist soon.

Ocibote, your experiences hit home as well. Best to you and yours, its down right difficult at times.

Thanks,
Cathy
Posted 9/25/2013 1:26 AM (GMT 0)
Hi,Ocibote, Ann
I have to agree that it's how he feels that is most important. While Mark's PSA was rising while on Xtandi, he still felt good overall. The only benefit with the Zytiga is that he's taking steroids and has better appetitie. When it's late in the game, I don't think the PSA means as much as early on, even for GL 8 and 9's. Then it's much more manageable with the pharmaceuticals, radiation and surgery. Hope you will continue to update us.

Enjoylife, Cathy, it's hard when your guy doesn't want to have procedures done that may help. The downside is it may tell him more than he wants to know. We are all different and fight our own way. Hope your docs encourage him to at least do the scope. I think that when Mark had the scope and the urologist scraped out a lot of the bladder mets that it helped relieve the blockage to the ureters and kidneys before it did too much damage to heal. From reading all the threads on HW, I have learned how amazingly different PC is for each guy. He has not had a recurrence (no symptoms yet) from his bladder or kidneys, blood work shows good function.

Pat
Posted 9/25/2013 1:34 AM (GMT 0)
Hi Pat, Very interesting what you said... "I think that when Mark had the scope and the urologist scraped out a lot of the bladder mets that it helped relieve the blockage to the ureters and kidneys before it did too much damage to heal. From reading all the threads on HW, I have learned how amazingly different PC is for each guy. He has not had a recurrence (no symptoms yet) from his bladder or kidneys, blood work shows good function."

I wonder if they would do that for John. I will ask. Thanks for the tip. May be worthwhile to slow things down at least.

Ann/Ocibote
Posted 9/25/2013 3:28 AM (GMT 0)
Ann,
Has his oncologist run a circulating tumor cell count. My husbands doctor relyied on the CTC more than PSA. Only a few specilzed pharmacies run the test..Boswick is one and your dr can sent the blood to them..
LuAn/Jitters
Posted 9/25/2013 2:43 PM (GMT 0)
Will post more after Sunday, but reading post at night before going to sleep.. I am keeping very busy preparing for Jim celebration this Sunday afternoon. Looks like we will have 55-65 people for dinner and fun outside and praying for decent weather. Ribs, wings pulled pork,lots of salads banana pudding, pineapple cake, 5 different kinds of cookies, seafood dips , shrimp cocktail, way too many calories. My friend and I have made some beautiful fall table arrangements with so much available this time of year in CT. I can't wait until it all comes together. Tomorrow is Jim's actual birthday,he would have been 67. We are all going to his favorite pizza place for dinner, and first....time without him, dang it hurts...
Posted 9/25/2013 4:23 PM (GMT 0)
Thanks LuAn for posting this information during this difficult time for you. Glad that you are keeping busy and it sounds like a great celebration.

I think a lot will depend on what the scans say. We find out Friday. We are in Ontario and I know that there is the capability here for CTC testing. I know a woman whose oncologist had it done for her. I don't think its use is widespread however.

There is a study here on CTC use. http://oicr.on.ca/node/6145

Objective: Circulating tumour cells (CTCs) hold enormous promise as surrogate biomarkers for cancer progression and treatment response. However, several scientific, operational and technical issues remain to be resolved before CTC analysis and characterization can be considered for widespread application within clinical trials and clinical practice. The overall goal of this project is therefore to begin to address these issues in the context of a multi-centre Phase II clinical trial, and this will be accomplished through the following specific aims/goals.....

If there is any question about progression then I will ask on Friday if oncologist will order a CTC test. Scans may tell a lot.

There are other markers they look at besides PSA. Not really sure what they are but maybe Alk Phos and Albumin.

I will be thinking of you tomorrow.

Ann
Posted 9/25/2013 9:36 PM (GMT 0)
We did follow alk phos very close too. CTC was done almost every visit but Jim's cancer was very aggressive and PSA rose every time.
Posted 9/26/2013 5:39 PM (GMT 0)
We had our monthly visit with the oncologist on Tuesday and things were good. PSA up a tiny bit, a bit more each month. Still on the Xtandi and he also got his Lupron shot. The results of the bone scan showed nothing new, so that was wonderful! Guess all the pain he is having is from the medication. We went away for a few days last week and it really seemed to be a drain. Not sure we will try it again. To look at him, you'd never know anything was wrong.
All of you are in my thoughts and prayers.

Jitters99-Hope the service goes well and the weather cooperates.
Posted 9/27/2013 1:16 PM (GMT 0)
Taking a moment out of my busy time to say that yesterday,Jim's birthday,actually was a very good day for me. I rode his horse first things the morning and I know he was watching me. Bucket, named after Jim's Bucket List, was pretty frisky on a cool fall morning, but I made his behave,even needing to slap him a little after nipping on my fingers, but he was a good boy,Jim never let him get away with anything...then I took my friend that is visiting from Biloxi to the Big E..the largest state fair inNew England, represents all 6 states, we ate corndogs and popcorn, and shopped of course, then the family all went to eat pizza at Jim's favorite restaurant. Pizza, well nothing's seems to taste the same without him beside me. Wonderful messages from all our friends on FB and then our kids and grandkids in Vegas send birthday wishes on balloons to Jim..
A little story behind the balloons that made me cry for the day.....our first grandchild,my only grandson, lost a balloon when he was 3...so upset. We went to the store and found the same balloon and placed it in our horse corral and called him the next day and told him we found it. He was thrilled. We did that on several occasions for each grandchild for as long as they believed that those balloons always found their way to their grandpa's horse corral.......lucky for us we were always able to duplicate those balloons for years..so the granddaughters decided they would send him a special balloon in heaven .....this made me cry!!!!
Posted 9/27/2013 3:30 PM (GMT 0)
Oh Jitters, what a lovely story. Sending a comforting 'balloon' hug from over the pond to grandpa's corral.
Susan
x
Posted 9/28/2013 1:16 AM (GMT 0)
Jitters, I'm glad Jim's birthday went well.
I am beginning to understand that everyone has a different journey and story when it comes to this: losing one's husband to this disease.
I am doing ok. Work keeps me busy, planning for the memorial on the 14th distracts me, receiving countless cards of sympathy warm my heart. I bought a cemetary plot on Wednesday, just moments away from my home.
A lot of Ed's cousins, aunts, and uncles are coming to the memorial - I haven't met most of them. It will be interesting.
I was glad to get a card from Hospice. They offer bereavement help. I'm not even at all sure what I need. Things are pretty much in a fog still.
Checking in with everyone, hoping everyone is doing well.
Posted 9/28/2013 2:12 AM (GMT 0)
Nhwife, yes I am seeing that also, our journeys are so different. I seem to be moving forward right now but so nervous about returning to Vegas where I will see friends that we have known for over 40 years not just 3 years, and of course his family members. So afraid I am going to crash and fall like humpy dumpty off the wall. Cleaning out another closet, and visiting our house where our renters live just seems surreal, praying I keep it together a little bit.
Found a support group again more prayers that its still meeting...it's at a hospice center so I think it should be. Even going to meet with his oncologist and staff to say thank you...
If anyone has some suggestions for these first, let me know ..I can use all the help I can get.
Praying nhwife you find the strength you need to have for your memorial service and meeting new family members too. Enjoy some great memories of your loved one..
Jitters
Posted 9/28/2013 5:09 AM (GMT 0)
Good evening lady warriors....just dropping in to say hello. Husband and I are a little "down in the mouth"....CT scan results said "stable, but just got the PSA results....46.82.......way more than doubled. Expect a change in treatment when we go back to doctor October 19th. Husband took himself off the Lortabs totally, since doctor said it was the medication making him feel fatigued. He thought that he would try weening himself off of the Lortab and see if that helped lower his fatigue levels. It's been almost four days...can't tell much difference. Made him go with me to the Seafood Festival this morning, eat some greasy shrimp on a stick and roasted corn on the cob. Meander through all of the arts & crafts booths......then on to Home Depot....wore him out......

jitters99 (LuAn) and nuwife (Susan), you both seem to making positive strides toward understanding your "new" roles and relishing in the memories and happy times, that is what your hubbies would want you to do. That road will not be easy, just smile up at the sky and tell Ed and Jim that today is a new day and hope that he will be by your side. The balloon story was fabulous...... ......

Hugs to all.....
Posted 9/29/2013 4:29 AM (GMT 0)
So many wonder comments and do appreciate updates. Just had another procedure. Surgery 3 Fridays ago, something last Friday and this Friday. Puny, weak and not particularly comfortable and constant dealing with business stuff; so I am still here and will be back. A memorial event at Pioneer Village by his living history groups tomorrow during a reenactment event.
Hugs to all. Jane
Posted 9/29/2013 11:20 AM (GMT 0)
Jane, hope your on the mend and feeling okay. The memorial event at Pioneer Village sounds wonderful, keep us updated..
Jitters
Posted 10/1/2013 2:40 PM (GMT 0)
Jim's celebration was spectacular, if I say so myself. You can check out some pictures on my FB page LuAn Presser. Everyone that's said they were coming did and we could have fed twice as many people.....a problem I always have. My family spoke, I could not, too many tears, but my granddaughter told the balloon story and get this...she is 12 now and we asked her the night before to tell the story and how special Cowpa was for driving every where to find matching balloons and she was devastated....she was still believing to this day that the balloons REALLY gravitated to our horse corral, she is still in shock, said she blew away her magic..but then she understood how special her Cowpa was that he would take the time to find a matching balloon and how many of her friends even called Cowpa about losing their balloon and sure enough they came all the way to our house to get it back, that IS one special COWPA!
I pack today and head for Las Vegas tomorrow,so so bittersweet.
MyVegas daughter "cleaned" out our condo, a good thing, don't really believe I have the strength to go inside and see his wheelchair, commode medicines and all those illness related items.
Spending 3 days at a hotel with my daughters for a high school friends wedding, yes he chased after balloons for her kids too, going to a dog shows will see good friends there, a day at the spa...room service, and warm weather and a pool.....does sound wonderful.
Eventually all will settle in when I go to Jim's old work place for my free flu shot and then dinner one night with other retires....but ...all will be okay..they always have such good memories and only a few tears..seeing our house will be hard but that's what this journey is all about I hear, time to heal.. Praying everyone is hangingi there and I will post as I make my journey. I always mention my friends here to my daughters, they too think of you often and always remember when I bring one of you into our conversation.
Posted 10/1/2013 2:47 PM (GMT 0)
Sounds great LuAnn. It will be a good, but difficult trip. Even just going to one of the civil war events where all his long time bestest buddies was really hard. My youngest said he just couldn't do it. My daughter and I had a hard time. Step by step. Take care on this part of your journey.
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