falling apart

Hello there! My dad is 52 and has prostate cancer. just diagnosed in May of this year. gleason 9. in june we found out it has spread to all bones from knees up into skull. his pain is getting worse and I am the only one taking care of him.. need some advice to distress.. help.....

I am so very sorry to hear of your fathers condition however hopefully there are still choices available to him to help treat his cancer as well as to help with his pain. Others will be checking in soon and please keep us posted

on any changes in his condition as well as to any other information you have regarding his prostate cancer including past treatment or treatments.

Blessings

 Michael

these are hard posts to respond to.  your father is so young and you are so brave and loving for caring for him.  stay on his doctors about his pain, and hang in there.

ed

 

my cancer is not that advanced so I cannot help with that. However, I am also caring for a parent with advanced cancer and mets to bones who was/is dealing with horrific pain.

My mother's pain is significantly less painful now after the following things were done -

100mg oxy contin a day, tylenol xtra strength 3 times a day, oramorph on a as needed basis. She also had 2 sets of radiation that really helped. They radiated some of the regions in her sacrum and legs where the mets (lesions) are. Tehy have also done a bunch of chemo, and surprisingly, what has really helped her is prendisone. They also did surgery and put a screw in her femur to mitigate potential fractures.

This is a lot for her to go through and has some serious side effects that manifest themselves in forms of panic, confusion, fatigue and depression. All this was done in a 4 month time span. I originally thought it was probably too much to put her through given her prognosis and life expectancy but the docs were right to do it. Taking horrific pain out of the equation makes the rest of this extremely difficult journey easier to navigate for her and her helpless loved ones.

Maybe you can talk about some of these things with your oncologist. My mother lives in a country with socialized medicine so issues of costs and worth were never even considered. Not sure what they would do here.

Best of luck in this difficult time. There are many people who have lived long and well with advanced PCa.

his oncologist wanted him to do a drug trial and dad decided against it as it had many side effects. as of right not his oncologist is not seeing him regularly since he turned down the trial and his urologist has been doing hormone shots. due to insurance ppurposes we are kind of stuck right now but he did just get approved for a state insurance that will cover 100% so we can get his treatment transferred and hopefully some different answers and a dr that is willing to help us.

Discouragedgirl,

You remind me of my daughter. The love you have for your Dad will get him through this. First let me say that my husband was diagnosed with advanced disease back in 2008. We have been through hell and back BUT he is still here fighting with all his might.

I am a big advocate of clinical trials. Some of the trials are better then the old medications being used today. My husband had excellent results on some of the trials. Don't let the side effects scare you. Patients do tolerate them quite well. Of course, there could be an issue with anything he takes. Hope your Dad is the one who will do well on it. Clinical trials are no longer used for last resorts.

I found during this PCA journey that the most important decision you will make is the doctor and institution you choose. Do your research on a top physician who specializes in Prostate Oncology.

Your Dad can live for many years with aggressive prostate cancer. Try not to be the Discouraged Girl - there is hope.

Zimac

As Peter suggested, if you tell us more of his stats and what area of the country you live in, someone here will surely know of a doctor in that area to recommend.

I was discouraged to hear the oncologist is not seeing him due to his not participating in the clinical trial but encourages when you posted that state had made financial aid available to increase your number of options.

In his situation you need a whole team preferably two urologists/surgeons, one radiation oncologist and one medical oncologist not all from the same practice, nd as many as possible given your logistics from a national PCa center.

The hormonal therapy is a pre-cursor to subsequent treatment. Besides Lupron, have your new oncologist look into either Xgeva or Zometa which lessen the chances of so-called skeletal events due to the bone loss one experiecnes with hormonal therapy.

If he has a lot of pain due to the bone mets, perhaps palliative radiation can alleviate that.
MRIs can supplement the bone scans to help isolate where to radiate.

I am fortunate to at this point have no pain and my mets are not nearly as substantial as his, but my remedy is also to have Lupron do its thing to shrink the prostate and the bone lesions before we decide on future courses of action.

You may find this webcast from earlier this week informative.

[url]http://www.cancercare.org/connect_workshops/361-advances_treatment_metastatic_prostate_cancer_2013-09-10[url]

As others have said and Jimmy Volvano said, never give up hope.

Valvano's ESPY acceptance speech became legendary, and he closed by saying, "Cancer can take away all of my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul. And those three things are going to carry on forever. I thank you and God bless you all." He received a standing ovation from the ESPY crowd.

You are a brave and strong daughter. Let me switch gears and make a suggestion for you, get some help for you.

Do not try to do this all on your own. Your hospital social services office, physician offices, any local Pc support groups can give you local assistance, a break, and minimize the stress levels least your health is impared.

Thank you for all the kind thought and words. Saturday night I had a benefit for my dad to raise some money as were still waiting to hear back from social sec. we raised a good amount to help cover home and medical expenses. he lives alone. I tried with the home care as I take care of him daily. but that was a big fat NO. he has a lot of pride and isn't doing well with all these dr appts and such. he hadn't been to dr since 1993 until this May when he got sick. he is not bedridden but has a urine cath and a kidney cath since the prostate is so big and blocking everything. when he does get up and around for a little while he gets very swollen dr says due to low kidney function. so here we are. waiting for something to come along as insurance wont cover much. fingers crossed social sec comes thru to get different insurance. Pain wise good days and bad. more bad than good anymore. hard to stand as hips are the worst. just trying to keep him comfy

Hello Discourgedgirl,

Sorry you have to be here. I'm new as well and find HW the greatest site you could be on. Everyone is so helpful and kind. Take it one day at a time.

As you can see from my signature, I'm a G9, with stage 4, but trusting in God and know everything is going to be just fine.

Just to let you know, I'm praying for you and your father.

Dave in Bartlett, TN