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Posted 5/2/2013 2:50 PM (GMT 0)
Thanks, Passages and Nancy.
Nancy, the mapping process will take about an hour and a half. It's a CTscan but without any injections. They have moved remarkably quickly on this so I wouldn't be surprised if they started tomorrow! but we expect next week. Each treatment will take a total of 20 minutes.
Today he is having a better day! Still in pain but nowhere near like yesterday. I wonder if he had some sort of reaction to the MRI? Who knows.
He is scheduled for radiation every day for the next three weeks. They are going to target the bones and the pelvic area. Hopefully this will help with pain and discomfort.
Thanks, everyone!
Posted 5/3/2013 1:53 AM (GMT 0)
Hope all went well today, nhwife.
Jitters hope husband has gotten enough energy to see outdoors.
Posted 5/3/2013 3:35 AM (GMT 0)
Jitters - Wow 43 years! What a lifetime of memories. Blessings to you and your hubby. I will keep you both in my prayers. My heart is heavy for you.

Nhwife - so sorry to hear about your situation. It's so difficult to deal with the pain issues. The emotional stress s overwhelming.
My husband has been using a Fentanyl patch for the spine mets with much success. Just a suggestion.
Have they suggested a systemic approach for his mets? Trying to compare treatments as my husband seems to be following a similar course.
Try to make the most of your weekend getaway. I sometimes feel guilty running out to do something for myself - probably not the best way to feel.

Passages - sorry to read about your husbands disease progression.
Boy, seems like we have our hands full. I guess we have to try to be strong. I don't know what to say - I know Bud would know what to say - he always did. I miss him too. I will pray for the both of you.

Time for myself has been so limited. My husband needs 24/7 care.
He developed cataracts from the steroids and doesn't see well at all.
His vision is 20/800. It inhibits him from TV, reading, computer, etc. His walking and balance is limited from his brain surgeries and the DVT's in his legs. So, pretty much I'm on call all the time.
I don't have much time to post, but know that I think and pray for you all everyday.

Zimac
Posted 5/3/2013 8:46 AM (GMT 0)
Ladies, still here and continue to be amazed at your inner strength and focus. Hugs and love to all, Passages, Jitters, Zimac, nhwife, littlem!!
Posted 5/3/2013 7:12 PM (GMT 0)
Thanks Special Lady. It looks as if your dad is still battling with you as his warrior lady. Hoping he is doing well.
Posted 5/4/2013 2:13 PM (GMT 0)
Hi to All you Wonderful Women, I just came across this thread and am inspired by the strength you show. Not easy, I know although my husband is well off compared to some of the reports here. But we are on this path. John's PSA was over 500 a month ago.

John will have his second Taxotere on Monday. He has been pretty exhausted but some of the symptoms have abated. His cancer had grown in the pelvis blocking the ureters and therefore requiring him to have nephrostomy tubes put into the kidneys last May. He was having pain in bladder before chemo started and a lot of bleeding there but both have pretty much stopped. He does have bone mets but no pain yet. He often says that he feels "so awful."

I hear you all about the emotional SEs of all this. John is having difficulty sleeping especially getting to sleep. I have had sleep problems for years and this does not help! I am exhausted from all this - the extra work and the emotion of it all. John too feels bad that I am doing pretty much everything now. We are at the point of needing outside help. We have 2 daughters within 30 minutes - Thanks God for that - but they are busy with work and small children.

Next week, John will be in worse shape again and I won't feel very comfortable leaving him on his own.He tends to be wobbly and last time had a fair bit of pain in the bladder. However, I really need to get out and look after some of my own needs ie doctor and physio appointments. I also would like to take the Healing Journey course that is offered here. It explores ways of managing stress and is available to both patients and caregivers. Any ideas on how to get out without feeling anxious or guilty?

What a journey we are on! My heart goes out to you all.

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
- CT scans show progression, multiple mets now to bones
Apr 15/13 - first chemo - Taxotere PSA 539
Posted 5/5/2013 1:39 AM (GMT 0)
Ann,
Relate to so much you say - sleep, doing so much and them feeling badly about it, just so much of it - and you are another warrior women for sure.

I've mentioned this before, but we learned of program that is pre-hospice called a palliative care program. Just there for support with doctors, someone to stay with them, cleaning house, baths; but nothing changes with their treatments. You and the doctor are in charge of that, but can help get you all sorts of help, run interference. There are not too many agencies that this is their primary focus. Some have hospice too, others work with hospice when it's necessary. Covered by your insurance, apparently.

As I tell many of the others that are not taking care of themselves (well all of us), they need to take of themselves - for they're sake, and their partners and families. Certainly easy to say, but not so easily done.

Hang in here and get us updated. Welcome.
Posted 5/5/2013 5:34 AM (GMT 0)
Haven't checked in on you all in a couple of days....
littenm, Zimac, Passages, gunfighter, silverlace48 and anyone that I haven't menetioned.....keep on posting so we can know what is going on in you journey and to all of you "atta girl" responders...thanks. We need all of those kind and supportive words...
Jiters99.....what a decision to have to make...but you both seem that this is the "step" that had to be taken and you both are strong "together". It's coming to most of us on this thread at some time...some earlier than others. I fear ours may be to soon. Our scans will be done close to the end of May. Again decision time...if husband "light's up like a lighthouse", don't know what the doctor will do...said no more Taxotere so other option I guess would be the Jevtana. I am praying that the Xtandi is working and keeping the PSA down and the bone mets on a "holding pattern". No really bad SE's, except the "fatigue"...he does so-so until around 3 in the afternoon, then he begins to really go "down"...but we work with that and make sure we are at home, so he can rest...pain still when sudden movements.
Jitters99 your husband wants you to continue to sleep with him, what a wonderful place to be, next to the man you love. I would want to be there with mine as well, hospital bed or whatever, we usually "spoon" anyway, so that doesn't take up so much room.
nhwife...I hear you and "cry" with you....wishing you and husband a little "pain free" days.
Ocibote...your journey started the same year ours started.........
Gosh, I will lay down tonight with a "heavy heart" after reading all of this thread, i have already cried to where I can't even read what I have written.....we love our men oh so very much and I can see that in all of your posting (words).......what more can I say....."Warriors".....take each day as it comes, don't worry about tomorrow or yesterday....just today!
Love to all of you from my heart to yours....
Posted 5/5/2013 12:38 PM (GMT 0)
All of you, thank you for your words and sharing your lives. I bless each and every one of you, to take the time to do so. I wish, so much, none of us had to deal with this but if we do, I am grateful to have you all out there, feeling our virtual hugs and handholding. You all know what to say. Bud would be proud of us!!
Pain - he is managing it with a schedule of pain meds. The fetenyl patch was mentioned and we may return to it if this schedule doesn't help. But so far he is in some discomfort but not pain usually.
Fatigue - still there, no energy.
Appetite - some changes but we are going to concentrate on protein and carbs when he is undergoing the radiation treatments.
Radiation - once a day for 3 weeks. Targetting the lumbar and hip bones as well as the lymph nodes in pelvic area. We have a lot of confidence in the R.O.
I was away about 24 hours with my sibs and it was good to be with them. They are supportive and have offered themselves as back ups to my turns with our mother.
Today - It is beautiful and holds lots of promise for getting some things done. We are going to the local Agway together to get more compost and staking for our peas. It'll be fun to get out together.
My best thoughts to you all - it seems we have more "members" of this small group, I'm sorry. Grateful to the guys and gals who drop in with their words of support - all welcome.
Posted 5/6/2013 1:17 PM (GMT 0)
Hi Passages, Your name immediately makes me think of the Gail Sheehy book "Passages in Caregiving". Some interesting thoughts but certainly her experience and options were far from what most of us have available to us. Nonetheless, worth the read...read on my Kindle....cheaper.

I will be looking for palliative care options. I do have someone coming this week to try out...she will cook up soups and stews etc to have in the freezer for those days I just can't manage. I hope too that she is a lovely person and that while she is cooking up a storm I can get out....and that John will have someone to talk to...or rather to talk to him. Will see.

We are in Canada and there is a government plan for some assistance but not very much, I suspect. All depends on what level of care is needed. Will call today. John has nursing care once a week to dress the wounds from the nephrostomy tubes. I don't think our insurance covers that palliative care but will get out the policy and check. Since we have government coverage we don't carry much health insurance.

I am certainly trying to take care of myself both physically and emotionally. Not sure what is best for the emotional side. I wonder if any of the warrior wives have found talking to a psychologist or psychotherapist helpful? There are psycho-social services available at the hospital at no charge but I am reluctant to do that at the moment. I think I would just cry! I did make use of such services years ago when I had breast cancer and it was good. I think it all depends on who you get.

Many thanks for you reply and support, Passages, when things are so difficult for you.

Thanks Tednsal: You said...."Warriors".....take each day as it comes, don't worry about tomorrow or yesterday....just today!
I need to keep remembering this!

nhwife: Hope you enjoy your time out at the garden centre. Good luck with the radiation.

John is having his second Taxotere today if his blood work checks out. He has been very exhausted and so perhaps it won't. Or perhaps that is just what the Taxotere does. He is so thin already and frail from years on hormone blockade of one sort or another. I am hoping that the chemo is indeed knocking back the cancer as the bleeding into the bladder has now stopped and the amount of urine getting through is greatly increased. But I wonder how many chemo tx he can tolerate and then what? Will he ever feel any better (less exhausted) than he does now?

Anyway...back to living in the moment! Long day at the hospital ahead. And what will we have for dinner?!

Ann
Posted 5/6/2013 1:37 PM (GMT 0)
All of you ladies are beyond amazing.

I read the updates and pray that each of you continue to have the courage and strength to endure each new trying day and the challenges that are presented.

You are all very incredible ladies.
Posted 5/6/2013 4:16 PM (GMT 0)
I wonder if I should start a separate thread...
Day One of Radiation - very promising news. The R.O. showed us where the radiation was targetted. A small bit of the lymph node tumor is not included as that is in the area which was radiated before. But the radiation is hitting most of that tumor as well as the hip bones and lower lumbar. The R.O. feels very optimistic that this will help alleviate the pain. If in fact pain becomes an issue in the upper lumbar, my husband can have some more radiation there.
So one down, 14 to go! (Don't worry, I won't do a daily report!)
Ann, thinking of your taxotere journey - I hope it gets better. It is so worrisome to not see them as they have been.
Mrs. WW, we all do what we do because we love our husbands as you do. They would have done the same for us.
Posted 5/6/2013 8:52 PM (GMT 0)
Warrior Women--Please take care of yourselves! I know of no way to have you plugged into an electrical outlet to be rejuvenated..Don't feel guilty, but you need time each week to get out and have your head screwed on straight. Have your hair done, a "mud pack", massage, or simply coffee or tea with a good friend or relative..Take that class at the local college that you always wanted to take.
You are all doing wonders for your husbands, but if you are in good spirits your mens' outlooks will improve also..I wish you ladies the best
Bill
Posted 5/7/2013 1:51 AM (GMT 0)
Hello my friends...
We are blessed to be in CT. My hubby is doing much better mentally and physically since we came. Took a few days with hospice coming so quickly to adjust both physically and mentally but I am there. He was adjusted within 24 hrs of being here. His entire attitude changed when he made the decision to stop treatment, and enter hospice in CT. Nausea is completely under control with just a sancuso patch. After a VERY physical weekend back to see two of our Grandson's sports games and go to a Kentucky Derby party all in one day and then another grandson game on Sunday. But even after ALL of that, he only needed to add his break through oral pills to his 50mg fentalyn patch once a day. Don't get me , wrong he is
Very fatigued but felt like it was worth every ache and pain he has to see his grandson play, and the good thing...he meant just as much to my Grandson, almost 15. Nest weekend it's our grand daughters Ellie's soccer games on Sat and working on her Relaying For Life team June 6th run on CT. Hospice is coming Wednesday and staying for 3 hrs so I can go to a doctor and have time to myself, and again on Friday for 1/2 that time...nervous about leaving him with someone we don't know, but she comes highly recommended. She will do whatever I need her to do in the house and personal hygiene for him. We'll see how things go. All the equipment, except bed yet. Eating much better, still craving coke, but what the heck, as far as I'm concerned if he wants it and will eat it go for it..tons of fruit watermelon and pineapple and canned peaches...he has never ate fruit nor drank coke...WTH????
But I'll take these last wonderful days and New England weather..rain to start Wed..ready for that too..Life is good for now, each day at a time.
Going to start weeding and mulching ...handling dirt is good for my soul, and it's mother and daughter time while day sits in his recliner and watches out the picture window..resting up for next weekend's games.
I am so sad that our husbands are going through all of this, and we as caregivers handle so much, just as they would for us. If one person lives longer because of one of the clinical trials my husband went through, it will all be worth it.
I just know for him..the decision to take Quality Over Life over more toxic treatment that would have given him 2 months at best, was his and we are both happy with it.
Hugs prayers all around ladies.
LuAn
Posted 5/7/2013 1:54 AM (GMT 0)
Gunfighter - as always thanks, and glad you are still here.
MsWorryWart, thanks for your support too.

Nhwife - you sound hopeful, that is good and part of the battle. Don't care if you do a daily report - it's contact and connection. Something that's helpful for all of us. Glad RO so positive, certainly helps.

Ann/ocibot - did he get his treatment? Blood work ok? I did decide we needed to check out groups at the Cancer Care/Wellness center, a free private support organization. They have groups, workshops, cooking classes, tai chi, yoga ..... On and on. My husband gets so much more out of his group. Right now the caregivers group is low on numbers and those there really need to be heard more.

Strange, it was mentioned about sleeping together - only one in the whole support group stays even in the same room; which I do understand their reasons. I'm trying to figure how we will figure it out when he needs to be in a hospital bed.

Tednsal - our doctor's comment is he lit up like a Christmas tree. Love light houses, so I would go with that analogy more and less lights :-). I also pray that the Xtandi does, at least, put his mets on hold. We had hoped that it would have at least done that much. This disease is so variable and unpredictable. The part of my mind that is organized and scientific, really despises that lack of consistency in advanced Pca.

Zimac, littlenm and all - hope you are hanging in there.

Take care all.
Posted 5/7/2013 2:16 AM (GMT 0)
Hi again, Passages. Yes, John had his chemo today. Hemoglobin was low but not low enough to warrant a transfusion but contributing to the fatigue. White cells good. He is not feeling too bad this evening but was pretty exhausted this morning. I went and bought him a coke and he perked up. Not something he usually has but these days you do what you gotta do.

I am going to look into more support from the outside world too, Passages. Besides the cancer support centres, there are other organizations here and some will drive to appointments (if I can't) or come to visit at home. That would add more interest to his life, I think. and relieve me too. It is time. John went to a couple of support sessions last year but said he felt the fear and didn't want to feel that way. Perhaps now that things have progressed he will feel differently but maybe not too. Many men do not want to talk about their feelings. I think we both would benefit from talking to someone experienced in all this.

As for sleeping in the same bed...great if you can do it. We both sleep much better apart but spend time together in the Master bedroom before sleep. I read Gail Sheehy's "Passages for Caregivers" and she addresses that issue. There is a caregivers group here but only once a month. I have not managed to go yet. Too bad.

Thanks for the support from you folk. I am so sad to read all your stories.

Ann
Posted 5/7/2013 2:34 AM (GMT 0)
Ann,
Our support groups meets Weekly. There are some in his group that seem to be beating the "beast", so not a downer totally. We frequently can hear laughter in there. I just know that we went for me, but my husband gets more out of it. It's a mixed group of cancers, genders, levels, etc. there is a prostate cancer meetings, but more informational. They no longer have an advanced Pca group. Early on way back my husband went to the prostate group, but he was so young compared to all the others, even now we might have been on young side. That's probably perspective and maybe not reality. In my group it's interesting to hear the different perspectives and the frustrations - everyone seems to feel safe and free to express their anger, hurts, sadness, etc. Anyway, if can find something like that, it might be helpful. We have lost a daughter and a wife. That's hard.
Posted 5/7/2013 11:53 AM (GMT 0)
Hi Passages, I will seek out a suitable group. I am planning to go this Thursday to a Healing Journey group for learning coping skills, developing spiritually etc. It will mostly be patients although caregivers are welsome - will see how it is for me.

You are lucky to have found a good group.

John is feeling relatively good today and eager to do a few small tasks. Yeah! Last chemo it was the third day that he was hit by it. So, we will enjoy today.

I see you have transfusions on your list. Was this for low Hg from chemo? Did they help? John's hg tested low - 94 in Canadian units - but not low enough for a transfusion.

As for the fatigue of these treatments, has anyone found anything that helps? Caffeine? Ginseng, I've heard....and even Ritalin!!!

Have a good day in spite of all that is going on.

Ann
Posted 5/7/2013 2:37 PM (GMT 0)
I apologize profusely for my absence. Computer troubles that are still not rectified. I hope this post goes without issue....

It is hard to know what to write on this thread. I feel for all of you so much. The caregiver's place is such a lonely one. I am very happy to hear that some of you are searching out support groups, getting away to see family and just plain getting out of the house. I think that is critical for all of you. I find it intriguing that so many of you have mentioned gardens/gardening. That is my happy place. I just planted half of the garden yesterday. My back hurts but my brain is happy

Ocibote (Ann) - A fellow Canadian! Good luck with the taxotere. Exhaustion is so debilitating but thank goodness that it sounds like no real pain. Do you have any idea what is causing the sleep trouble? Does anything help? Sleep is so critical

Jitter (LuAn) - warms my heart to hear how things are going in CT. Time with the grandkids is priceless. You must be so happy that you made that tough decision.

nhwife - I am dying to see when the radiation will start to help with the pain. Does he tolerate the session itself OK? I hope your brief getaway with your siblings gave you the break that you not only deserve but need too.

Passages - you spend so much time asking about how everyone else is doing and yet I see very little about how you guys are doing. How are you holding up?

Zimac - I know you are busy.....sadly too busy....but I hope you can "feel" the support from this site even if you aren't logged in

Tednsal - Good thoughts for your scan at the end of the month. That is a long time to wait and I know it will be in your minds from now until then

We have not had our results from our scan on the 22nd of April. Our uro is supposed to call as soon as he gets them but he did not have the results last Tuesday. Surprisingly, our primary care doc had the results on Wednesday. He said "they look good" but wanted to leave the details to the uro. I called his office yesterday and he now has the results but hasn't called. We really like this doctor but my god.....please don't keep us waiting like this.....

May the sun shine on everyone today

Nancy

Post Edited (littlenm) : 5/7/2013 8:42:00 AM (GMT-6)

Posted 5/7/2013 3:04 PM (GMT 0)
Hi Nancy (littlenm), Glad to see a fellow Canadian. We have such a different set-up and system here. Where are you located? We are in Toronto. Perhaps we can compare notes? What kind of a scan are you waiting for? Hope it is good news.
Gorgeous day here! Hope it is for all of you.
Ann
Posted 5/7/2013 3:43 PM (GMT 0)
Ann....we are in Saskatoon. You are right about the different set up in Canada. We are waiting for bone scan and CT scan results. We had a bone scan in Phoenix in November that showed bone mets and a follow up CT in February that showed growth of the original mets and additional mets. Our GP said that it looks like there is no change from the bone scan in November. I am happy but a little confused since the CT in Feb that he does not have access to showed change for the worse. I like his results better for sure

Nancy
Posted 5/7/2013 6:42 PM (GMT 0)
Jitters, I think we passed each other in posting. I like to hear the sense of relief and peace, yet I know there is pain and sadness under there. Unbelievable how much he's getting to do. Prayers answered, you weren't even sure if he'd be able to even enjoy the outdoors briefly. Your post was such a blessing to me - yet again, tinged with such sadness.

Ann and Nancy, I'm glad you found fellow Canadians. Sure will help with understanding some of the medical situations - still can't believe you haven't received a thorough report on his scans. My father was Canadian way long ago. New Brunswick. Went to Mt Allison ?, but came to the states for his graduate work (Brown, than Purdue). His whole family ended up here.

Ann, we are doing much better. I feel better now that he feels better. The Xtandi about did him in - in a way it may have done more than just the serious se - with the massive spread of the cancer, or may just the way it would have been. He was getting to the point of being bedridden, but now he's out about. Not back to all activities. Still needs a couple of naps, at least, a day. My energy is running low trying to get things done and ?? Right now he and the 5 year old are napping and I'm resting beside him and catching up.

Take care all.
Posted 5/7/2013 10:36 PM (GMT 0)
All, I read and reread all what you have written. Glad to hear from Zimac. I agree with you about the xtandi, by the way, but my husband hasn't really recovered from that...though he only takes one nap a day!
Nancy, littlenm, I hope you hear now about those scans! That is ridiculous. Tomorrow will bring you knowledge.
I'm looking at support in somewhat different ways: someone to mow the lawn, stack the wood, do the clipping. We have good neighbors and friends helping with all of that.
Day Two of Radiation: He is feeling a lot of pain - we were warned there might be a flare up and it began yesterday and is continuing. The oxy doesn't even hardly cut it. We will mention this to the nurse and doctor tomorrow. We were so hoping for some relief; to have it worse is a real blow. There might have been an increment of improvement today but I think that is wishful thinking.
It looks like I'll be calling in to work on Thursday and not going into the office so I can drive him. I'm not even thinking of next week when I already know work commitments have be away Tuesday night. We do have a neighbor who will take him. I just hope he has less pain.
Does anyone have experience with this type of pain flare up with radiation?
Finally, I have a job interview next Monday. Am i crazy to consider a new job? I have to check out the insurance - how does one do that? The job is 20 minutes away instead of an hour and a job that requires me to travel all over the state. Am I crazy?
Healing thoughts to all. It is hard to manage everything but I am doing it ok so far.
Posted 5/7/2013 11:14 PM (GMT 0)
Nancy: There are other indications of growth of bone mets I believe. LH (lactate dehydrogenase) and Alkaline phosphatase. John's had a huge increase in both in the month before starting chemo.

It is a shame that the results are taking so long. Unacceptable but I am not sure what you can do about it! Hang in there, I guess.

Passages: I'm glad that things are better. All these drugs can have horrendous side effects. Isn't it wonderful to have young ones about? We have 3 grandchildren here in the city - ages 5 and 9 months for one family and a 2 year old in the other. I find they ground me - they can be tiring but rejuvenating too if that makes any sense at all. How precious they are.

Ann
Posted 5/8/2013 1:46 AM (GMT 0)
I think fatigue has set in FROM such a busy weekend. Big pain increase but still has appetite and no nausea , they are thinking they might ween him off the nausea patch Sancuso, and just use Zofran so see if it works, if not back to patch. I think pain and muscle aching will subside after a few more days of rest...it's going to rain and thunder...what better napping weather.
Bless everyone and feel my hugs and hear my prayers for all of us.
LuAn
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