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Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 5)

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Posted 6/22/2015 2:47 PM (GMT 0)
Thanks Susan  the word that jumped out at me in your comment was "HOPE"  Steve has given up on it but I just can not let it go yet. I will share what ever news CTCA give us and I really- really hope it is good. Our daughter got married this weekend and Steve said "at least I made it to see her get married and did not need to be push in a wheel chair. We take the best we have and can get and make it enjoyable. Carol
Posted 6/27/2015 11:43 AM (GMT 0)
Thinking of you and Gary this morning. If you want to use it, my email is on here.
Hoping all is well,
Susan
Posted 6/28/2015 11:53 PM (GMT 0)
I know you guys have mostly been chatting on another thread but when you have a minute, you might drop by and say hello to Diane who seems to be having a tough time with her dad...

Dad Has Advanced PCa - Please Help
Posted 7/25/2015 3:20 AM (GMT 0)
Let's get this thread back up to the top...
Posted 7/25/2015 7:16 PM (GMT 0)
I agree. This thread has been a constant source of information and support. Even Gary's family have come to recognize that I am able to continue to provide care, support, and the most current tx options due to this site and the wonderfully supportive people I have "met" here. There are a lot of newcomers that need us now and we need to be there for them. Welcome to the "newbies" and I hope we hear updates from the veteran caregivers here soon! I will give an update on Gary soon as well.
Beth
Posted 7/28/2015 6:33 AM (GMT 0)
Bumping this thread to top with an update for Gary and hoping to see other updates from some who haven't been around for awhile and also the many newcomers on the forum.
Gary went in for his onc visit and third round of taxotere. His PSA rose to over 1000 again, but at least it quit doubling (always trying to find the silver lining) tongue
The other good news is that his liver functions remain normal and the rest of blood work is normal. His alkaline phosphorous was really good. So why is his PSA so high? Who knows.
If it continues to rise he will get xtandi. He was on it once before for a few weeks, but his PSA kept rising, so we all thought it wasn't effective (including our onc.) Then I see on HW that it could take several weeks to kick in. So I have been lobbying for another try.
In the mean time Gary has been feeling surprisingly good, and we were even able to take a short ride on the motorcycle to Mendocino for lunch.
He has been eating well an sleeping pretty good..
I am at the end of my eight week summer break, and I return to work soon. I only work 20 hrs per week. I read about so many caregivers that are trying to care for their very sick spouses and work full time too.
How do you do it???
Praying that all the caregivers here continue to find the strength to carry on and some moments of beauty and happiness amidst the daily struggle.
Beth for Gary
Posted 7/29/2015 12:36 AM (GMT 0)
Hello all,
I sincerely hope things are easing up for Antonia & Don, Sue & Dave, Carol & Steve and Beth & Gary.
Carol - Did Steve have the transfusion today? I hope that eases things for him.
Beth - Great news that Gary is feeling good. That's what we all want to see - our men feel good, smile, enjoy a meal and be able to move around without getting breathless and feeling weak. It sure doesn't sound like too much to ask, does it?
Sue - I see your struggle to get Dave what he needs continue on - you are definitely a fighter! I really admire that.
Antonia - as always I consciously join with you in support for your Don and hope today he has seen some improvement.
Krissy! Hope Paul is doing well and getting about while you're getting your studies done!
My Don is doing better and we're having family over for his 73rd birthday early as chemo is Friday. The little girls are excited to help me decorate and surprise PopPop! It will be a good time. I'm thankful for every day we have together.
Knowing I've missed someone - lets keep this thread going...we need each other.

2005 Husband dx at 63 yo Gleason 4+3
2006 LRP First post surgery PSA 11.8 Stage IV Start Lupron
2010-2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Xgeva & Taxotare
10/31/2014 Last Taxotare due to SE’s PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/20/15 PSA 13.68 Multiple lesions found in liver
3/27/15 Start Jevtana w prednisone Neulasta 24 hrs after chemo
6/19/15 Stop Jevtana PSA 63.40 CT shows left kidney hydrophenosis caused by tumor pressing on ureter and increased liver lesions
6/19/15 Start Taxotare and carboplatin
6/26/15 Nephrostomy
7/10/15 PSA drops to 9.63 after first cycle of Taxotare and carboplatin
Posted 7/29/2015 7:32 PM (GMT 0)
Just an update: Sorry I’ve been so busy. Hubby had his third back surgery late last night and they removed all the old hardware (it was broken) put in new and much more of it. Removed bones that broke and that was by his spinal cord. They also removed a large tumor on his spine. He is now missing 5 vertebrae because of cancer. There are no other options available as he has done it all and I have no idea when he can come home. Prognosis is not good.

One caregiver asked if anyone works outside the home. I work 40 hours a week, but thankfully my boss has given me some time. I go into work a few hours a day then to the hospital. It sure hasn’t been easy and mind you it’s our wedding anniversary today. Go figure.

Take care all.

Enjoylife (Cathy)
Posted 7/30/2015 1:12 AM (GMT 0)
Oh my goodness, Cathy, your poor husband has been through absolute hell. And you must be completely exhausted. You both deserve so much more - especially on your anniversary. I hope this surgery helps his pain and things take a turn for the better.
What a great boss you have to help you out in that way. As has been said here many a time, you wonderful women who work while at the same time taking care of your husbands are amazing!
For tonight try to put your mind at rest, get some good sleep and together lets all hope for a better tomorrow.

Wishing you and your husband well,
Susan

2005 Husband dx at 63 yo Gleason 4+3
2006 LRP First post surgery PSA 11.8 Stage IV Start Lupron
2010-2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Xgeva & Taxotare
10/31/2014 Last Taxotare due to SE’s PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/20/15 PSA 13.68 Multiple lesions found in liver
3/27/15 Start Jevtana w prednisone Neulasta 24 hrs after chemo
6/19/15 Stop Jevtana PSA 63.40 CT shows left kidney hydrophenosis caused by tumor pressing on ureter and increased liver lesions
6/19/15 Start Taxotare and carboplatin
6/26/15 Nephrostomy
7/10/15 PSA drops to 9.63 after first cycle of Taxotare and carboplatin
Posted 7/30/2015 5:31 PM (GMT 0)
Thank you so much for your kind words myman (Susan) and Beejane. They mean so much to me and I realize how we need each other. Wonderful to know this thread is still here. I wish and hope everyone and their man are doing okay.

This morning he is doing better, but lost the use of his right leg due to inflammation on the spinal cord. Hopefully doctors can get a hold of that and he regains use.

Thanks again.
Enjoylife (Cathy)
Posted 8/5/2015 7:36 AM (GMT 0)
Cathy, Is your hubby out of hospital? Is he able to walk at all?
I caught up on posts from sue saddened wife today. So many of us struggling with the ravages to our men, and yet all are holding out hope while our men meet each day with renewed hope and spirit to make the most of what the day offers for as long as they are able. And we do everything we can to make that possible, evem when it is to just get out of the way! yeah
Gary is feeling surprisingly good despite his psa rise and chemo regimen. Once we had established a med cycle that kept nausea at bay, he is eating good too. Lots of family visiting this summer has helped his spirits.
Take a moment today to go outside and just feel the sun on you face and free your mind off the weight of despair.
Beth
Posted 8/5/2015 11:45 AM (GMT 0)
Joining Beth in wondering how your husband is doing, Cathy, and hoping things have improved over the past 5 days. We also post to "suesaddenedwife" if you want to go there.
Thinking of you,
Susan
Posted 8/5/2015 12:39 PM (GMT 0)
Echoing what the other ladies have said, how are you and your hubby doing?
Were the doctors able to reduce the inflammation in his spine?

Please let us know and join all the women over on suesaddenedwife where we all seem to have
migrated.

Hope you have an "uneventful" day. Lisa
Posted 8/18/2015 6:30 PM (GMT 0)
I wanted to "bump" this Topic up. I thought there may be some new Caregivers on now that may need support.
As this journey progresses it gets more and more demanding and stressful. With taking care of our men, managing the appointments, researching the next plan of action, to see what's new in treatment protocol. Finding things outside "the box" . It's good to see that we are not alone in this fight. Others are going through similar challenges. Some are further along. We can gain so much from each other and offer support. I pray for strength and peace for each one of you. Barb
Posted 8/19/2015 3:20 AM (GMT 0)
Thank you for bumping this thread Barb. We are awaiting test results for Gary to see if his liver mets are neuroendocrine. If so, then the treatment plan will change to add carboplatin. Medonc is also asking us to consider tamoxifen, as clinical trials have shown limited success in dropping pca. Has anyone else been offered tamoxifen as a tx?
Posted 8/19/2015 3:30 AM (GMT 0)
Barb, it's good to see you post. We need every voice to encourage, comfort and share information.
As Lisa mentioned it seems most of us have migrated to the suesaddenedwife thread. Peterdisablehard
helped Sue get the thread going. Please post there so we don't miss you! We need your voice.

Susan

2005 Husband dx at 63 yo Gleason 4+3
2006 LRP First post surgery PSA 11.8 Stage IV Start Lupron
2010-2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Xgeva & Taxotare
10/31/2014 Last Taxotare due to SE’s PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/20/15 PSA 13.68 Multiple lesions found in liver
3/27/15 Start Jevtana w prednisone Neulasta 24 hrs after chemo
6/19/15 Stop Jevtana PSA 63.40 CT shows left kidney hydrophenosis caused by tumor pressing on ureter and increased liver lesions
6/19/15 Start Taxotare and carboplatin
6/26/15 Nephrostomy
7/10/15 PSA drops to 9.63 after first cycle of Taxotare and carboplatin
7/31/15 PSA now 2.6 after 2nd cycle
Posted 8/25/2015 8:43 PM (GMT 0)
Thank you everyone for your concerns, it means so much. What a whirlwind this has been. Hubby is now in the rehab hospital from his back surgery to remove cancer and replace hardware. He is walking a few steps but unable to get out of bed or out of chair without assistance. He has new problems going now, he developed some kind of fungus on his feet which has almost no circulation in them. They are discolored and have sores, he continues to have a wound vac to help heal his back from the surgery. (Staples from neck to buttocks). Not good to see especially this is his third back surgery. Now he has developed Congestive Heart Failure and they are giving him diuretics for that. This is such a trying time, but seeing his smile despite all the pain and him still being in the hospital keeps me going. I have no idea when he is able to go home and there was talk among the doctors for him to go to assisted living. He doesn’t like the idea at all.

Hope everyone is hanging in there. I read in the "Sue thread" too. Hugs to all and thanks again.

Enjoylife (Cathy)
Posted 8/26/2015 3:13 AM (GMT 0)
Cathy,
Oh my goodness, you & hubby have been through it! As the days pass lets hope the fungus gets better, the PT results improve and his surgery wounds heal. This is an extremely tough time for you both (I know, that's an understatement) but even so, despite all of that your husband sounds like a pretty tough guy and you make a great team.
Now, with going to the hospital and all else you do, you absolutely have to take care of yourself, Cathy. You have to. Thank you for the update - we care about you & hubby, do be sure to tell him.

I'm going to quote you on Sue's thread I know the ladies there want to know.
Posted 8/27/2015 5:21 PM (GMT 0)
Thank you Susan (myman) for posting my comment in the other thread!
Posted 8/28/2015 11:49 PM (GMT 0)
Beth- I think we are going to be near you soon. Is Cazadero close enough to visit you? Also going to be SF and a bit south of there for a day or two...
Posted 8/29/2015 5:41 AM (GMT 0)
Krissy,
Sent you an email. If you don't get it email me. You are going to be in our neck of the redwoods!
Beth
Posted 10/21/2015 4:52 PM (GMT 0)
Hi All,

Thought I would try to bring back this thread by posting an update. My husband has been in the hospital 3 months now and is currently in a skilled nursing rehabilitation facility. After his third back surgery in which they removed the broken old hardware and took out tumors on his spine he spent time in rehab then back to intensive care in the hospital with heart failure. He is trying to walk with a walker and he is making small steps to try to come home. He cannot get out of bed or out of a chair without two people helping him. Very sad for me to see this and I feel there is very little I can do except to bring him goodies and be by his side when I can. It’s been a rough time as I work full time and worrying about him and what the future holds is still very much the unknown. I am sure his PSA must be up, but they aren’t testing him in this facility. I just don’t know how much his heart can take as well. He has been through so much and is the strongest person I have ever met. We continue on!

Please let me know how all of you are holding up. I love to read your posts.

Enjoylife, (Cathy)
Posted 10/22/2015 5:04 AM (GMT 0)
Oh Cathy, the spirit of our men! A person would only have to watch these guys endure what they do every day to appreciate the phrase "Don't sweat the small stuff!"
I get my handle "celebrate life" from inspiration from Gary. I bet you get yours from your DH.
I am especially distraught that you are having to continue working full time while being there for your husband too.
I am so happy to see you back here with us and thank you for resurrecting this thread.
Take Care, love, and praying for you both.
Beth
Posted 10/22/2015 10:27 AM (GMT 0)
Your strength and courage are incredibly, Cathy.

Thank you for taking time out of your hectic schedule to give us an update.

Keeping all of our Pca warriors in thoughts and prayers... and their wonderful caretakers.

Be Blessed...

You too, Beth! :)
Posted 10/22/2015 10:04 PM (GMT 0)
Celebrate Life (Beth) You and I think of the same thing when it comes to our nick names. These men go through so much and hang on to every minute. You are going through a lot yourself.

MsWorryWart, Thank you for your kind words, it means a lot. We need to keep coming here for support and I for one have really realized how much so.

Saw hubby today and his mind was all over the place he gets anxious. To see him in a diaper and unable to get up is hard. But he still insists that he wants his ice cream and smiles to watch certain shows on TV. We keep going!

Thanks again. I hope all of you are doing little things for yourself when you can.

Enjoylife (Cathy)
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