HealingWell
Search Close Search
☰

Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 4)

Support Forums
>
Prostate Cancer
✚ New Topic locked
1 23 4 5 6 7 8 9 10
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/30/2014 10:54 PM (GMT 0)
I have been following the board, but haven't felt like writing, as we have been knee-deep in the hoopla. Probably a bad choice of words, since my DH had surgery on March 3rd, where they inserted two rods in his femurs, as they said he had impending hip fractures. His recovery has been tough and he has lost an insane amount of weight and continues to do so. I am wondering if he is getting that wasting disease, where the body stops metabolizing food. He still wants to eat, but feels pressured. His cancer is still advancing. He has been in rehab, and is supposed to get out next Thursday. We go to the cancer center on Tuesday to get his Eligard shot, although it has not brought his PSA down. We are also supposed to talk about Zytiga, but the insurance will only cover so much. There are so some financial options we will be discussing, but with the dramatic weight loss, I am wondering if it will still be an option. Not sure what is going to happen, but who does?

Susan
Posted 3/31/2014 12:50 AM (GMT 0)
It may be that your DH will be eligible for financial help with Zytiga. Check the Zytiga site, ask a pharmacist or even your doc may be able to direct you in some way. It may well be that your burden could be relieved somewhat. I wish I could say something wonderfully comforting to you Susan, this is a tough road and all we can do at times is put one foot in front of the other and move on. I know this to be true.

Best to you and your DH
From one Susan to another
Posted 3/31/2014 3:56 AM (GMT 0)
Thanks Susan

Truer words can not be spoken. Just when I think it can not get worse, it does. Onthe other hand, we are closer than ever, and he appreciates my support. That is golden. I just wish the guy could catch a break. Come tommorow I will begin checkinout the financial stuff regarding the Zytiga.
Posted 4/3/2014 3:54 PM (GMT 0)
Susan radsgrrl22,
you can google financial aid for prostate cancer and find some great links for more than just Zytiga. Medicare has a link and there is a link in one of the permanent threads on the board. Our oncology group had a foundation that would assist with monthly bill payments and other non-medical stuff.

Try not to focus too much on the weight loss. While it's part of the big picture, he can be OK for a long time, even if he is much thinner. Hope he is home soon from rehab and that you can get a plan for upcoming treatment choices from your oncologist next week. It's amazing how strong you can be, more strength than you ever imagined you had.

Looking back, as I shared with one of the other caregivers, I am so proud of how Mark fought his battle and I am so proud of US for fighting this together and maintaining our loving connection.

Pat
Posted 4/8/2014 6:38 PM (GMT 0)
Hi Pat,

Well Bob got home on Thursday. Happy to have him home, but it has been somewhat of struggle. Trying to get his pain under control. They are shifting him on to a Fentanyl patch, which has been scary for him, because he is worried about fluctuating pain. Off the morphine, but still on Oxycondone every four hours. His weight is actually going up since home which is good. Appetite is good. Stamina is not so great. PT, OT and the home nurse has been by. Says he wants to continue with this stuff, and moving ahead with Zytiga. I am working with the Cancer Center, who are walking me through an application process with SS, and then possibly Johnson and Johnson. I also am applying through an organization called Patient and Pros Fund.

I am also proud of us, and what we have faced together. But, I must admit I am feeling overwhelmed by his negativity. I understand the pain issues, and other things, but his grumpiness makes me sad. I am having a problem with not being able to focus on work, which could impact our financial situation. It is just too much sometimes. Your wisdom and experiences comfort me.

Thank you, Susan
Posted 4/10/2014 8:14 PM (GMT 0)
Susan, radsgrrl22,
Sounds like you are doing all you can, it is overwhelming. If you only had to deal with one thing -- Bob's pain and meds, or Home Health, or financial assistance, or social security.... Oops, add the grumpiness on top, and you are over the top. I don't know how we get through each day, but we do. Even looking back, there was no magic to it. You just do what ya gotta do! Try to get 5 or 6 good solid hours of sleep if you can. When we are on overload, it's even more difficult to focus, and then we stress out because we feel like we are not meeting our own expectations. I hope your employers are considerate of your situation and understand at some level that your focus is Number 1 on Bob, DH.

Are you eligible for FMLA (family Medical Leave) at your work? It can be taken intermittently, but limits on how much renew every 12 months. Not all employers are required to offer it, depending on number of employees, other stuff. You may have already maxed out and even if you get the time off with your job protected, most employers don't compensate you for the time unless you have a vacation or personal time off bank.

If you strike out with the fund you mention, feel free to email me (check my profile) and I'll give you the names of 3 that helped us out. Sometimes it depends on the drug that you need help with or even if they currently have funding. Some states have different regulations on how the pill type drugs are covered, either under your RX plan or your medical plan.

I know, with all you have to do, how do you even have time to do web searches to find this stuff???!!

As difficult as it was for Mark and his side effects and where his mets were, I am so grateful that he never had major problems with his bone mets like spinal compression or SE's from the Xgeva (bone strengthening drug that can cause femur fractures). With all of the falls, no broken bones. Fractures and bone surgery is debilitating if you are otherwise healthy and take time to heal and regain your strength.

I also have a couple of questions for you that I can't put on the board. If you have a few minutes, send me an email, and I'll get those questions to you.

Pat
Posted 4/11/2014 6:48 PM (GMT 0)
Dear All,

Had a rough week, hubby went to the hospital. Large tumor from the prostate is now in the bladder besides the mets to the bones, etc. He is at home now but had his first round of Jevtana. I posted on Gizzy’s Jevtana thread.

I can’t thank you all enough for posting your experiences as it gives me insight. Each man is very different on what works and doesn’t work for them. He has had in order; Lupron, Radiation, Taxotere, Zytiga, Xtandi and now Jevtana.

Thanks again and a special thanks to Pat (Dreamer44)

Cathy
Posted 4/16/2014 2:59 AM (GMT 0)
Cathy,

I have been down with a vicious flu this week, so I have been delayed in a response. So sorry that you guys are having a tough time. I look at the list of treatments that your guy has gone through. Ours grows on a daily basis it seems. I had to rustle myself out of my sick bed where I have been for three days to take Bob to get measured for radiation treatments next week. I was so sick and so tired, I thought I should just curl up on a table and sleep.

I hope things settle down soon for all.

Susan
Posted 4/18/2014 11:06 AM (GMT 0)
This Easter, I am going to a sunrise service. Its a first for me. Thoughts and prayers for each of my caregiver friends will go with me. Without going too far into the religious meaning of Easter, for me this will be a day of renewal. The caregivers who have lost their loves will understand the parallels between the final months with PC and the weeks of lent before the symbolic rejuvenation of their personal spirit.
Peace to all
Pat
Posted 4/19/2014 10:25 AM (GMT 0)
I join Pat in her thoughts and prayers for those of you on this PC journey. While not going to a sunrise service, I will hold you close in a later one.
Pat, totally understand the parallel, thanks.
Posted 4/21/2014 4:59 AM (GMT 0)
Thank you nhwife

It means more than you know, then again you do know it.
Posted 4/22/2014 4:20 PM (GMT 0)
Not sure why, but I have been feeling despondent these last few days. Which is strange, because although we are in the new normal, things are pretty stable right now. Bob's weight is continuing to come up. He is walking better, and is starting radiation tomorrow, which should bring his pain down. I just seem to have a lot of free flowing anxiety, lack of sleep and am so tired all of the time. A lot of my friends are traveling lately, and in some ways I feel trapped. I want to take off for a few days, but don't feel like I can because of the meds, and him being somewhat confused at times. His son was just diagnosed with Bell's Palsy, and is in school. So I am hesitating to ask him for respite, although he steps in as needed.

Not sure what is going on, but wanted to get it off my chest.

Susan
Posted 4/22/2014 9:03 PM (GMT 0)
radsgrrl22 (Susan)

I completely understand what you are going through as I am the same. This is the most difficult thing I've ever done in my life and yet each day I seem to get through it. Just know you are not alone and we are here to listen. You can vent all you want.

Take care.

Cathy
Posted 5/1/2014 5:04 PM (GMT 0)
Finally some great news to report! We got Bob's Zytiga covered! He starts tomorrow! A foundation which right now I can't remember their name is covering it 100%. The Cancer Center we are going to processed the paper work. I can't say enough good things about them. Bob is finishing up his 10 day radiation which has been challenging for him. His pain level has still been off the charts. They upped both his morphine and Fentanyl, so we shall see. I am very hopeful today.

Susan
Posted 5/1/2014 5:50 PM (GMT 0)
Glad to hear things are looking up for you. Worries about getting his meds payed for sounds like that one more thing you don't need right now. My daughter had Bell's Palsy one summer when she was in college. She still has a slightly lopsided smile but it's not noticable. Most people recover from it hope the son does as well as my daughter did.

Thanks for posting with some good news. We worry.
Posted 5/1/2014 9:44 PM (GMT 0)
I hope I am not overstepping myself but please hold Zimac and her Bob in your thoughts. Tough days in that household.
Posted 5/1/2014 10:51 PM (GMT 0)
I stumbled onto this thread . I'm so sorry for those who get the disease of old age at a young age!!! This is why it's so important in my view to get PSA test at age 40. Living with PCa for 20 years and going through what you have gone through in terms of treatments and life altering disability is absolutely heroic! God bless all of you.
Bob
Posted 5/1/2014 11:27 PM (GMT 0)

nhwife said...
I hope I am not overstepping myself but please hold Zimac and her Bob in your thoughts. Tough days in that household.

They are never far from my thoughts, along with all of you women who have been down this path and know.
Posted 5/1/2014 11:32 PM (GMT 0)
Dear Pat,
You are so strong and such an inspiration…and, also, an amazing writer. You could write a beautiful story that so many would want to read. I am so sorry for your loss.. We have been in these trenches for so long, and this is the first time that I wrote on caregivers.

Prostate cancer is such a difficult beast…it dives down and then comes back up and then hides for awhile,…just when you think it is gone, it returns. Your dear husband suffered, but he had you to get him through this trial. What a blessing. You were exactly where you were meant to be. I try to keep that in mind…Peace to you dear.
Posted 5/2/2014 12:51 AM (GMT 0)
Thank you Peter and everyone. It does make a difference to know that others who are going through this battle have us in your thoughts, as you all are in ours. My prayers are with Zimac and her Bob. This roller coaster ride is crazy.

Susan
Posted 5/7/2014 5:36 PM (GMT 0)
We have a new member -- norm62 -- who is asking what to expect with hospice on his thread:

What Now?

Candidly, so far he sounds more depressed than terminal, but he keeps asking. If some of you wonderful people could speak to his questions about hospice that would free me and a few other members up to hector him about his medical details.
Posted 5/17/2014 4:45 AM (GMT 0)
Dear norm62 ......Deamer44/Pat could help answer a lot of questions (there really are several caregivers who cold answer questions. but they may not visit this site very often). The sad thing to say is that most of the caregivers that had hospice have lost their soldiers to this "disease" and and may not be reading these blogs but everyone once in awhile....may hurt too much for them to continue living through this journey......

tednsal/Sally.
Posted 5/20/2014 1:08 AM (GMT 0)
Hi All,

I posted on Gizzynme's thread "My Journey Jevtana". Life here continues to be difficult as we had another set back. I hear you loud and clear Sal and I am understanding the situation more and more. It's so debilitating and exhausting at times, all the while trying to work a full time job. Thank goodness they give me time off. I just pray everyday that I can hold it together, keep him going despite the way things are going. Boy is it difficult. My turn to vent I guess, sorry. Thanks.

Hope all are doing okay.

Hugs,
(enjoylife)
Cathy
Posted 5/21/2014 2:21 AM (GMT 0)
Re Norm 62 about Hospice.

One journal page i may write could be titled Is It Time to Call Hospice. That one decision carries more weight and emotion than all of the decisions you made before on the PC journey.

What to expect from Hospice? They will do their best to provide the level of support you need and that may change as disease progresses. All through the last 2 years of Mark's fight, i was his advocate and his ally and his caregiver. When his care was transferred to Hospice, I was surprised that I had to continue to be his advocate and his voice when he could no longer speak to ensure that Hospice staff supported his wishes. At some point the day to day emotional toll was so high that I wanted the Hospice staff to be his advocate. Time does help the healing process and the healing provides some perspective on how amazingly fragile I was during those last few months. Caregivers know you find the strength every day to live another day, to meet every crises head on. I was blessed to find strength when I needed to be strong.
Hoping each if you finds a few moments of peace every day.

Pat
Posted 5/21/2014 3:12 AM (GMT 0)
Would any of the caregivers be interested in seeing if we could have a chat session on this board? It seems like things are getting heavy for some of us, and I know it would be nice to have a "real time" conversation. I am feeling very alone and isolated. I can hear that in your words as well, Cathy. Tonight I sit at home with a man who is feeling better physically, but is very confused. Almost in a dementia state. Not sure if it is from the Prednisone, the Zytiga, the pain meds, low potassium. Tonight may be a long night once again.

Susan
✚ New Topic locked
12345678910