Some help please?!

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Jenihenry
New Member


Date Joined Dec 2010
Total Posts : 3
   Posted 12/17/2010 12:04 PM (GMT -6)   
I could really use some help!  My grandfather has had prostate cancer for about 15 years and has been using lupron depot for at least the last 2-3 years.  He has had horrible side effects and now the drug is no longer covered under insurance and they have to pay for it out of pocket.  He is to the point of deciding to continue this or not and I have to get as much info as I can to help him make his decision.  His oncologist doesn't seem to be helping at all.  He won't even give him any pain meds.  We know that the cancer has spread but he doesn't want to do anymore tests, so we don't know where it has spread to.  Any information or helpful websites would be greatly appreciated!!
 
Thank you in advance!

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 486
   Posted 12/17/2010 12:56 PM (GMT -6)   
Jeni, I'm so sorry you and your family are having to cope with PCa. The cancer is tough enough without having to fight the system as well. If you could provide a little more information, you will achieve better advice and/or suggestions.
If you can, please tell us the following about your granddad;

his age;
last psa;
gleason score;
how do you know it's spread?
What kind of treatments has he received thus far? surgery? radiation? seeds?
What were the results of his biopsy?
If he had surgery, what were the pathology results? something like pT2 N0Mx or whatever basis they used for his staging.

The more information you can provide the better the input you will get from this forum. There are some incredibly sharp guys on here who will be pleased to help you, but it's difficult to get good input without good data.

God Bless, and we're looking forward to hearing from you.

k
Age 57 at Dx
5/09 PSA 2.26
6/2010 PSA 3.07 FPSA 18% DRE +
Biopsy, 7 of 18+, >60%, 4+5=9
7/21/2010 - RRP
Nodes neg, Ves neg
tumor contained, still 4+5=9
pni ext.
9/3, 2010 PSA - 0.04
9/3/2010, I'm 99% continent
10/14/10, PSA still 0.04, and lupron #1, now 99.9% continent
Total ED, 3 caverject failed
10/20/10 OD'd .5cc trimix, after 3hrs, neo synephrine shot
tried .15 & .17 cc neg, next .2

Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 12/17/2010 1:14 PM (GMT -6)   
It doesn't matter what his stats are at this point - fire this quack and find a competent, caring medical oncologist.

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 486
   Posted 12/17/2010 7:53 PM (GMT -6)   
Jeni; Please check back in with us, and let us all know how you are both doing. We care.

k
Age 57 at Dx
5/09 PSA 2.26
6/2010 PSA 3.07 FPSA 18% DRE +
Biopsy, 7 of 18+, >60%, 4+5=9
7/21/2010 - RRP
Nodes neg, Ves neg
tumor contained, still 4+5=9
pni ext.
9/3, 2010 PSA - 0.04
9/3/2010, I'm 99% continent
10/14/10, PSA still 0.04, and lupron #1, now 99.9% continent
Total ED, 3 caverject failed
10/20/10 OD'd .5cc trimix, after 3hrs, neo synephrine shot
tried .15 & .17 cc neg, next .2

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3784
   Posted 12/17/2010 9:55 PM (GMT -6)   
Stick with us Jenihenry we can help you get through this..Where there is a will there is a way..But please fill in some of the details asked above so we can focus our help.....
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
" 61: 5.2
" 64: 7.5, DRE "Abnormal"
" 65: 8.5, " normal", biopsy, 12 core, negative...
" 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
" 67 4.5 DRE "normal"
" 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT, Dec

Willie B
Regular Member


Date Joined Jul 2010
Total Posts : 155
   Posted 12/18/2010 5:19 AM (GMT -6)   
Go to your Gfathers' doctor and TELL him that you need the drug and ask if he can get it on 'compassionate grounds', seeing as the insurance has stopped.

Then, TELL him that your Gfather MUST have some pain medication.

PCa usually moves to the bones, very painful and can lead to fractures etc.

IF the doctor is still unmoveable, go to the hospital administration and ask them where you can get some financial assistance.

My understanding, is that many hospitals have either an office to help with this or can connect you with a church/group such as the Kinsmen/Rotary who may help.

If all of that fails, call the local Salvation Army and explain the financial need to them.

Hope you can get some financial help and a doc who will order some strong pain meds.

Mary (Willies' wife)

Jenihenry
New Member


Date Joined Dec 2010
Total Posts : 3
   Posted 12/18/2010 6:02 AM (GMT -6)   
Ok so I had all this typed out and something happened and erased it alll!
Getting all the info out of my grandpa is part of the problem - he doesn't want to worry anyone.  We're working on him!  What I do know/remember is that he is about 84yrs old and was diagnosed in 1992-93.  He had 2 different cryotherapy treatments about 6 months apart, then a year later had his prostate removed.  After that he was great for about 10yrs.  I know at some recent(withing the last 5 yrs) he started taking Casodex and Lupron (not sure if at the same time or not)  He also has other health issues; high blood pressure and an aortic aneurysm.  He has ALOT of bone pain especially in his lower back and legs.  I can remember him hitting himself in the thigh or the back(that's how he deals with the pain)  The oncologist has told grandpa that it has spread by his psa levels but grandpa doesn't want to do anymore tests.  I'm not sure of the current psa level but within the past 2yrs I've heard it was 0.01 but grandma said the last one was horrible.  My grandpa is a very intelligent man (I just found out recently that he had worked for NASA!) but the problem is all of his reference books he has is 20-30 yrs old!  So my mom and grandma want me to help them talk to him and give/get him as much info as I can to help him make a decision.  The biggest problem I have is that I live 8 hrs away and I get all of my info from my grandma-who has a hard time remembering and my mom who doesn't understand alot about healthcare.  I am a pharmacy tech at a hospital so I understand how things are supposed to work but he doesn't seem to be the "norm".  I know that part of the problem is my grandpa when the dr has asked him if he's in any pain he won't tell him, so my mom and grandma told the dr and the office said that grandpa had to be the one to ask for it. (I understand why - the dr thinks they are seeking drugs for themselves - which is soo not true!)  I know how much an oncologist can help and it kills me that his isn't helping at all.  My mother-in-law just passed away this past August from breast cancer that had spread to lungs, liver, and then to the brain.  She had been fighting that for 17yrs.  I saw how her drs worked with her doing as much or as little as she wanted and it just makes me so frustrated with my grandpa's dr.  She was given any pain med for any little symptom and he's been rolling on the floor in pain and can't get anything!  It makes me want to punch the dr!  My grandpa deserves much better than this, he is a wonderful person who wouldn't do anything wrong and yet it seems as though he's being punished!  My grandparents are active in church and I know that helps them get through the hard times but I wish that the dr would help grandpa at least with the pain.  I know that after he gets his shot for about a week or so he is so tired and exhausted that he can barely do anything (which is not like him at all)  I just pray that someone can help give us info or at least websites or some kinda references that he can use to help make a decision to continue with this med or not.  I'll be visiting them the week after Christmas - so suggestions quickly would be appreciated!!  Thank you all!!!

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 12/18/2010 10:51 AM (GMT -6)   
Fire that doctor immediately. Also -
If your grandfather has decided to do no more tests, that may qualify him for Hospice Care. Each chapter is slightly different, but hospice can and will get him pain meds. Call the Hospice chapter in his area immediately. Most people wait far too long and the patient suffers needlessly. They also advocate for the patient with the hospital and doctors.
paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!

proscapt
Veteran Member


Date Joined Aug 2010
Total Posts : 644
   Posted 12/18/2010 12:48 PM (GMT -6)   
JeniHenry - so sorry to hear about all that your grandfather is going through.

I have to agree with the advice to get a new doc. There is much that can be done to alleviate his pain. If he truly does not want additional medical treatment at this point, hospice is a good solution that can get him pain meds and otherwise respect his decision not to receive further treatment.

It's not clear that the lupron is helping at this point; perhaps it is not doing anything, so to pay out of pocket for no benefit + suffer the side effects may not be a good idea. But the most important thing is to treat the pain.
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