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Update on my DH

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Posted 7/12/2016 6:04 AM (GMT 0)
I haven't give an update on Gary for some time as there hasn't been much change until recently. He has had liver mets for over a year now and his last scan showed that they had decreased in size and number and his bone mets were unchanged from previous scan. There was some possibility of omental mets. He has had ascites fluid removed from his abdomen three or four times and he is currently receiving mitaxontrone chemotherapy. His PSA is 1180, down from 1684 in April. The real concern for both of us is that he, like many advanced cancer patients, is showing increased cachexia, or wasting disease. His weight dropped from 140 to 117 and although he does battle nausea frequently, he makes little progress in gaining weight even when he eats a lot of calories and doesn't throw up. Most of the current research that I've seen indicates that there is not much tx proven to be effective in combating the cause of cachexia, which is complex and not just related to intake of calories. We will be talking to the medonc next week about a possible tx.
Incidentally, CA has also passed the "death with dignity" law that Gary has taken into consideration if it comes to that.
I hope I'm not breaking any rules by mentioning that. I haven't reviewed them in a while.
Meanwhile, I am off for the summer recouping from a rotator cuff repair and spending as much time as I can with my DH. He mostly watches movies and baseball, but we occasionally make a drive to our cabin in the hills (we did yesterday!) and commune with nature.
I hope Gary's story might be helpful to others who have a similar dx. I have learned so much from the vast knowledge of TA and others here, as well as doing research myself. I'm always happy to correspond with my forum friends too!
Beth for Gary
Posted 7/12/2016 6:56 AM (GMT 0)
Beth,
My heart and prayers go out to you. I know how hard that is to watch. It sounds like you are giving him a lot of quality of life, and that's all we can ever hope for.
- Allen
Posted 7/12/2016 8:46 AM (GMT 0)
Beth, I can't imagine just how difficult this must be for you and Gary, and yet I frequently see your supportive and encouraging posts on here to other fellow sufferers. You are a great asset to this forum.

Gary is very fortunate to have such a supportive wife, and I hope he gets some relief from upcoming treatments.

I hope your rotator cuff heals quickly and you can both make the most out of your time in the hills.

And when he feels ready for it, I very much hope Gary can have a "dignified" release. Wish such laws were passed in Australia.

Wishing you the very best.

Chas
Posted 7/12/2016 12:45 PM (GMT 0)
Get ye to a med mj dispensary the folks that work there can lead you to mj variant to help cachia
Posted 7/12/2016 12:45 PM (GMT 0)
Beth, You give so much to this message board with supportive messages, encouraging posts to newcomers and your sense of humor. Sending you and Gary our thoughts and prayers from New Jersey. Sue
Posted 7/12/2016 1:02 PM (GMT 0)
Your support really shows in your posts and with your own issues to deal with you are a very strong woman. Going to the hills with you and feeling the world around him has got to be a great joy. Thank you for the update. Please take care. -JR
Posted 7/12/2016 1:28 PM (GMT 0)
Hopefully something can be done with the weight issue. And rotator cuff is no walk in the park either.

Movies and baseball. Both soothing pastimes.

Hang in there Beth. You're someone who shows strength and gives comfort. ..

God bless you both...

From across the miles...

David
Posted 7/12/2016 1:39 PM (GMT 0)
Beth,
So sorry to hear about the problems Gary is having with cachexia. That has to be heartbreaking. His recent labs sound like the chemo is working which is encouraging. PC is such a complicated disease. You always have a positive word for for everyone here. I hope you can feel the support from the rest of us.
Glad you were able to get away and enjoy your cabin retreat.
Your shoulder repair can be a long and painful recovery. It is difficult to take good care of yourself when you are caring for someone else. Wishing healing for both of you.
Beth (in VA.)
Posted 7/12/2016 2:40 PM (GMT 0)
Beth, you are one of the most supportive members of this group. I can only wish you well, and let you know that I am thinking of you both . Enjoy every day.

Oh, and do your physical Therapy on that shoulder, I've had the surgery twice, no fun, but the PT is so important to full recovery
Posted 7/12/2016 5:30 PM (GMT 0)
Dear Beth and Gary,

I think of you both often ... you are beloved here on the forum, always reaching out to others ... you always show tremendous care and compassion ... and you have a gift for "reaching out" to those in need.

All of us here are mindful of you, Beth ... and Gary's health concerns. Something in his current treatments is helping to knock down some of those PSA levels --- you and Gary have tried many different treatments, which has given you the expertise and insight to help so many others here --- you truly HAVE blazed a trail, trying different medications and treatments --- that is helpful to all of us here --- your story has been invaluable, because so many of these treatments are new ... that's why we need the "sharing of stories" on this forum.

Someday, many of these treatments will be "tried and true" --- doctors will have fully assessed their level of efficacy --- they will come up with new treatment sequences --- new combinations of medications --- and then there will be the "new and improved" treatments --- the "breakthroughs" we all wait for with optimism. I know research scientists dream of a day when chemotherapy will be completely outdated --- that new types of treatments will emerge that are easier on patients ---

We all live in the current moment --- I admire you and Gary for always facing forward --- and having the conviction and courage to TRY so many different medications and treatments. I know in my heart that it's been a tough battle sometimes --- but just knowing that Gary is a SURVIVOR today, at this very moment, gives other fellows like ME continued hope --- and the hope that you have given to new members who have joined our forum here is tremendous --- you have given a gift that can not be repaid.

Meanwhile --- you and Gary are still living life --- movies --- watching baseball games --- a trip to the cabin --- I think since my diagnosis, I've learned that the simple things in life are TRULY the best things in life, aren't they? Your post is a testament to that ... for that, I thank you ... a simple life lesson for all of us to remember.

Remember to stay connected to family, friends, and faith --- in whatever form that takes for you. I'm always thankful to see your posts.

Thank you for your faithful friendship to this forum --- past AND present,

Iowa State University ~ CYCLONE FAN
Posted 7/12/2016 5:47 PM (GMT 0)
So glad to hear that you are able to spend extra time together.
Posted 7/12/2016 7:20 PM (GMT 0)
Hi Beth,
I think of you often and hope things are going as well as they can for you and Gary. I admire your courage and strength. My heart goes out to both of you.

I appreciate your support and knowledge on this forum and can always count on a kind word of encouragement from you. I am sending good thoughts to you and Gary as you continue your journey through this horrid disease.

Peace,

Sue and Chris
Posted 7/12/2016 8:19 PM (GMT 0)
Hi Beth,
I think of you and Gary often. He has been fighting advanced disease for many years now and continues in the fight. I am so grateful that he has you in his life. Often, we as soldiers in this war don't share our true feelings with those closest to sand consequently we feel shut off from the rest of the world. For many of us, our only outlet is a forum such as this one, where we can share our feelings honestly with one another. I am not a religious man but I find myself praying more often these days, and I pray for you and your husband. I wish you all the best in this battle and am sending my thoughts and prayers your way.
Posted 7/12/2016 11:12 PM (GMT 0)
You are in my prayers. That is difficult to go through.

Peace,
Andrew
Posted 7/13/2016 5:11 AM (GMT 0)
I have no words to express the gratitude I feel for the outpouring of support and prayers I have received now and over the years from the members here. I would like to respond to each of you with a personal note of thanks, but so many of you have responded! Wow. So I will just say to everyone here: Gary and I thank you for your loving thoughts and prayers! As Almost a 10 said, I rely on my friends here to be able to say things I can't tell my best friend or family.
@Bolo..We live in a county where it is legal to cultivate one's own medication, so no need for overpriced dispensary.
@ Prato..this is my second cuff surgery too, so I am following Dr orders to the tee. But I am an impatient patient smilewinkgrin
Beth
Posted 7/13/2016 3:39 PM (GMT 0)
Beth
So sorry to read of Gary's wasting. It's hard to fight when you don't have the energy needed to do so.
I lost my dad a couple weeks ago and he was only 73. He passed away "peacefully" - relatively, because he was at home with hospice care. It would have been harder if he was in a hospital.
Is Gary at home or does he need more care at a hospital?
I have appreciated your thoughtful posts and wish you both well. I hope for Gary's (also my dads name) comfort in the coming weeks, months, years.... His peace will add to yours.
Take care
Posted 7/13/2016 3:42 PM (GMT 0)
Hi Beth,

I just came on this site today, clicked on prostate cancer, and came upon your message. We have a lot in common. My husband is also 56. Was diagnosed with PC in October 2015. Extensive bone mets, liver mets as the doc described 'more tumor than liver', PSA 1264. Lymph node involvement, a tumor in the lower pelvis. Gleason 9. He got 7 rounds of chemo, and lupron. In January he got another scan, and lymph was gone, and tumor in pelvis gone. Liver was healing well, and bone stabalized. He feels great other than the hormone side effects. He just got another scan a week ago, and things were still shrinking. Honestly I am at a loss of what to think. His PSA has never gone below 18. Was 23 last month, but dropped to 20 this month. What does all of this mean? What is the future? Can he just be stable like this for years? This is all so confusing. It sounds like your husband Gary has been dealing with this for 5 years? The doc said at the last appointment that if the PSA continues to rise he will put him on enzalutimide. (sp?) I guess I am just looking for someone who has the same basic diagnosis to talk with. The doc said my husband is in the 1% club. Meaning his is so rare for it to be so extensive and he is so young. If you have any insight, please let me know. Prayers to you and your husband.
Posted 7/13/2016 4:55 PM (GMT 0)
Hi kitty and welcome to the HW forum. I am so happy you found this site and you are reaching out to the members here. This is an AWESOME place to get reliable and current information and tons of caring support.
You are so right about our husbands are traveling similar paths. And yes, for over five years Gary has been battling this beast, when he was supposed to make it two years or less.
I would like to begin email correspondence if you like. Click on the colored envelope next to my handle Celebrate Life in my post.
Also, I will start a new thread for you so others can welcome you and provide their insight. Tall Allen has a lot of information about clinical trials that your DH may qualify to participate.
Welcome and best to you Kitty.
@Gunner..Yes, Gary is home and we plan to keep it that way. Although his energy is very low, he still gets around just fine and has a decent qol for now. No hospice as of yet because he continues chemo and other tx.
Beth
Posted 7/13/2016 6:23 PM (GMT 0)
Beth - Sending hugs and prayers your & Gary's way.

Thank you for the many times you "held my hand" as we struggled with Steve's DX and TX. Please reach out any time via my email.

Suz
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