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

Thank you Susan for bumping this thread! I hope some of the newer caregivers will also check in here and give updates. I agree that we need to continue to post here to give and receive support. I think about the folks I've met here every day. No one other than those in the war zone really understand what life is like living the battle, and this is a safe place to find answers and support.
Beth

Renee- your husband's cancer does seem to be very slow growing. I have had bone mets for over 2 years with no pain. It's just part of life now. Please stay strong and be there when he needs you.

All Caregivers - THANK YOU!

Hi Moon - Glad to see you post here! I send good thoughts to your guy hoping he can gain some weight,
that's a major concern for you, I know.

Welcome Renee - Your man might find that HT is not so very bad and in most cases pretty helpful. Keep us posted how he's dealing with it and you're right - exercise is good but my husband thinks the ice cream is better!

What a strong person you are, Cathy and I'm sure your husband is deeply grateful to have you by his side. please know we'll be here to support you both.

Beth, I appreciate you!

Krissy...??? How u doing? Are you being a good student? And Paul?

To those who haven't been here before we hope you find this thread to be helpful and supportive.

Sue - Believe me you are loved & missed. You are an amazing woman to keep going forward with the fight for better testing for the men of Canada and to make known what your dear Dave suffered due to incompetent care. Sending you much strength and love.

Susan

2005 Husband dx 2005 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 3rd cycle
8/21/15 4th cycle PSA 2.4 CT scan next. Great results – Kidney issues resolved, all lymph nodes reduced in size and liver lesions improved
9/11/15 5th cycle PSA 2.1 Nephrostomy removed
10/02/15 Chemo break due to neuropathy in feet to right below knees & up to
first joint in fingers

A very warm welcome to Renee, team Chris and Mrs George! I hope you are able to get some anxiety relief by visiting here and seeing that there are more and newer medications that will hopefully give your DH' s pain relief and much longer life.

Team Chris, I was puzzled by your first post and still am as to why your hubby is not continuing with chemo if it's working, and I'm glad you are finally getting some tests to see what's going on. Let us know. There are new RT tx, like xofigo, that can dramatically reduce bone pain, if his scans show mets are still present.

Renee, so good to hear of the slow progression of your man's PCa. Pray for you that it continues that way and the future tx kick it in the rear!

Moon, prayers for you too. Let us know how Sue is doing with her campaign if you get in touch.

Cathy...a grandbaby! Congratulations! Is this your first?
Our granddaughter is one of the truly bright spots in Gary's life. I am so thankful he has had time to watch her grow from baby to sweet girl.

As for my Gary, he continues to be very fatigued by days end, but most days he's up and about and feeling pretty good. We occasionally battle nausea, but by tweaking his diet and trying different combination of meds, we can usually get it under control within a day or so.

Keep posting everyone. We need each other's love and support to keep going...at least I do :)
Beth

Thank you Susan. Really appreciate your interest and support! Hugs,
Beth

Hi Teamchris, so sorry you are here but I think this thread will be helpful to you & your husband.
I may have missed it but how old is he? This certainly has been a difficult time for you both and I understand what you're saying about trying to learn all you can so good decisions are made for his care. There are quite a few of us here who are in that position so we do understand that pressure and I can say, for myself, at times, it's almost paralyzed me for fear of making a mistake. It's a lot to emotionally absorb but having to educate yourself about all of the ins and outs of cancer is overwhelming! So, you can see, we all go through this in some degree - don't be so hard on yourself. I'm sure some of the ladies will chime in and confirm what I've said.

For now, take a breath and give yourself a break. I'm sure you're doing all you can - we all are. Keep coming back here, you can say whatever you need to. It's ok. We try our best to help and we're only expert in trying to get through.

Susan

This is the type of sh** I put up from from the Canadian medical system and the BCCA in particular: Husband has suspected brain mets as suddenly cannot speak. Palliative guy schedules for a "Head x-ray". I go directly to the radiation oncologist who dealt with the situation when he went cross eyed. She calls hospital (where I took him for an emergency CT instead of the "head X-ray" at a local outfit) and is told that there are no apparent brain mets but large lump in base of skull. So she asks me if I want radiation to his skull base. I emailed back with, "Is the met pressing on a nerve, as his tongue isn't moving." she comes back with "Sorry I don't have time for these chats." EXCUSE ME??? As a taxpayer I fund you, madam! This is my life partner. It takes a shorter while to type "yes" than to write lines like that. So angry!

Post Edited (Moonlitnight) : 11/6/2015 8:40:51 AM (GMT-7)

Thanks Lisa. I am still so angry about this that I myself feel paralyzed. How dare she! And she was the one person at the cancer agency who was reasonable to us in the past. These people are stuffed up with their own self-importance. They have no compassion and forget who pays their salary as they flit around in their Porches. I would love to take you up on your offer, and hugs to you for your kindness, but being Canucks, we have no insurance. xx

...Update: Palliative care doc called to say he had looked at scan and the rock-hard lump in the back on Don's skull is a lymph node as it isn't showing up on the scan. I said, "Well, I guess they will zap that too" and he said there wasn't much point in his opinion because "It's all over him anyway." I think I am living in the worst nightmare, surrounded by a bunch of insensitive and useless "physicians."

Cathy, thank you. The problem is, I thought these two were pleasant and helpful. I myself have a somewhat gentle but firm disposition. I am polite but I stand up for my guy and his rights and wanting the best treatment. Maybe I should be licking everyone's boots and never daring to ask a question or making a suggestion. I just feel like tearing my hair out at the moment, and crying on someone's shoulder. Going to give my guy a hug as he looks so sad. xx

Antonia my heart is breaking right now for you. I know exactly how you are feeling and this is just not fair!. The medical system is just so unfair in how they are looking at our men with stage 4 diagnosis. It is beyond comprehension that medicine is barbaric to say they won't do things to prolong life. By the attitude they cut us off at every level of care we try to get. It is no wonder we feel so isolated and alone . The only time they want you to have anything is when they force pallitive care down your throat. Please give Don a hug from me and I can't even begin to imagine how he is feeling.
When I personally emailed Susan I told her how strong you have been at getting and using treatments that think out side the box. You have taken on medicine and you have won !! If your battle with Don had been just 5 yesrs ago he never would have had the opportunity to be here with you this long. It is so true we have to advocate and we have had to BEG for care for our men and in our hearts we should never ever regret what we have gotten because of it. We have risen above to ask questions about drugs, treatments and care. We have had to educate ourselves and we have had to step on toes along the way. Just never forget you have done it all for the Love of a good man ...your man and right now if medicine can't or won't do anything to help it is the one thing they can never take away from you and Don. You have done more for Don than any Dr ever could and right now you are the one who can hold him ease his fear and let you love be what surrounds him , You are not giving up or in ! You are strong and you wiill need to draw on this right now . You have my phone # you call me tonight if you need to talk .Sending you Love and what ever strength I can to help you and Don XOXO 💙 💙 💙

Thank you Renee. I hope for your husband's slow progression as well. No man should have to live through this - at any stage. Two "secretaries" have apologized for the latest callous behaviour from the BC Cancer Agency docs. One said she thought it was completely out of line and apologized twice. This place is a nightmare. The radiation oncologist we meet with (a different one) on the 16th has rave reviews on Rate MDs so I hope he is at least compassionate. Since Day 1, we have had nastiness from the BCAA including the "I assume you have made arrangements for cremation" remark from one doctor to my husband. I just don't have the energy to go to the top with this at the moment and they will all lie to protect each other anyway. Don is not doing well at all. The diarrhea is killing him. He has a good appetite but nothing stays put for more than an hour. I have tried everything: stool padder-outers, anti-motility agents, bile acid sequestrants, enzymes, in large doses and often all at the same time to no avail. This all started during Ra 223 therapy, which was stopped for that reason. Today is another day and we hope for a miracle.
Bless you all and know my heart is with you as well as your husbands. xx

Krissy! So glad to see you here but sounds like you've been through it with everything going on. I know you're tough and juggle a lot at once with your health, Paul and school. Glad to see you're taking care of your appts and tracking down what ails ya! Hope Pauls results are good, too. And YAY for your grades - good job, Missy!