Hopemylove......

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Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 5/31/2008 2:16 PM (GMT -6)   
Karen-

My wife just asked me how you and Larry are doing. I just checked and, unless I missed something, it's been over a week since we heard from you.

I know this is a very difficult time for you two and we just want to say we're thinking of you.

-Les and Carol
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.


hopemylove
Regular Member


Date Joined Apr 2008
Total Posts : 65
   Posted 5/31/2008 6:24 PM (GMT -6)   

Les and Carol,

Thank you for checking in with us. It has been a long week, but Larry seems to be tolerating the chemo well, so far. He is extremely fatigued and achy and his pain meds don't hold him quite as long as they did last week. We go to the oncologist on Monday for blood work and maybe his Zometa IV for the bone mets. I don't know if his kidneys will be ready for the Zometa. Last week the left kidney was only at 75% (the right one is still not working)before he started the chemo so we'll have to wait and see. I have been trying to research the neuroendocrine carcinoma, but at times it is very discouraging as most sites say that the prognosis is very poor when it is neuroendocrine prostate carcinoma--about 7 months--even with treatment. It is also very hard to find any clinical trials or articles as it is so rare. I continue to try to be positive and with all the prayers we are receiving, I am hopeful. I was just going to begin researching for the night. I feel I need to know more about the chemo and its effects on his body.

I do appreciate your concern. May God bless you both throughout the week.

Karen eyes


Karen--New York
Husbands Info:
Age of diagnosis--62
2/28/08--PSA 279   DRE--positive/rock hard
Flomax and Casadex started
Biopsy--3/7/08--187cc--Gleason 10--12 of 12 positive--Perineural and LV invasion identified
T4 bone met.--hydroureteronephrosis/right kidney
3/28/08--Lupron Inj. started
4/7/08--Zometa IV started
5/15/08--PSA 12
5/20/08--Tubes placed in kidneys (through back)
5/21/08--diagnosed Neuro Endocrine Prostate carcinoma
5/28-30/08--1st Chemo
 
 
 


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 5/31/2008 8:28 PM (GMT -6)   
Karen-

During the three years I've been fighting this battle, unlike some others, I've been very open in telling people about my situation. I can't begin to tell you all the stories I've heard from people about folks they know or are married to, who were told get their affairs in order because they only had x amount of months left. And in each case, that was 8 or 11 or 15 years ago. There's a man who works in the next department to mine, who, when I told him about my situation, told me that in 1991 his wife was diagnosed with stage 4 breast cancer and given a few months. It's now 17 years later and she's still going strong.

There are times (like right now) when my optimism fades somewhat, but those stories are what lifted me from the depths of my despair in the beginning and gave me hope. I hope you are able to take some comfort from what I've just said - I wish I could do more.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/31/2008 8:56 PM (GMT -6)   
Karen-
My husband and I have been praying for you guys. Gordy is right. Medical miracles or whatever you would like to call them happen every day. We will pray for one in your situation. Keep fighting!
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
Praying for a cured dad. First PSA 3 months!


Co-Moderator Prostate Cancer Forum


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 5/31/2008 9:19 PM (GMT -6)   
Karen,
Your husband is in a bad situation and yet you kindly post to Dutchy and myself offering your support. Thank you for that...you are very special.
Les is right, you know, and if Les is saying to hold on,well, you should!
Please know you & Larry are in my thoughts and I'm hoping for the best for you.

Susan
Husband Diagnosed 11/17/05 Age: 63 PSA: 7.96 No Symptoms
2/09/06: LRP - Post Pathology - Gleason 4+3 Stage T2b NO MX
3 mo. PSA: 11.8 Stage T3a
6 mo. PSA: 18.8 Stage IV Systemic w/ distant lymph node involvement
Start HT - Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
PSA - Undetectable since 6/07/07

Link to journey:
http://www.healingwell.com/community/default.aspx?f=35&m=826731

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