rob's hands are worse

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lifeline
Regular Member


Date Joined Aug 2007
Total Posts : 67
   Posted 6/1/2008 6:01 PM (GMT -7)   
sad   mad Hi everyone: Sorry i haven't been here for awhile, lot of stuff going on.  I really need help and info if any for this.  Rob's hands have started getting worse, he is noticing more weakness the last couple of days. the muscle atrophy on his hands is now so noticable that tonight he was getting angry and frustrated.  Does anyone know if this means that more tumors are in more of the nerves that go to the arms?  The last time we had the radiation done for the tumors in the nerves at the C7 dr. said he can not do anymore radiation in that area. Does anyone know of anything else we can try.  We are desperate now.  I don't what he will do if he loses his hands. He once said that he would rather be dead than lose the use of his hands.  He had another chemo last Wed. and dr. upped the dose to the max 140 for Rob's weight etc.. When we teleconferenced with him last Tues. I asked him what else he can try if Docetaxel doesn't work. He just said that we are going to take it month by month. Everytime i suggested a new drug to try he again shot me down and wouldn't listen.  The way he spoke left both of us with the impression that Rob was near the end. He woke me in the middle of the night to ask if that was the feeling i had also. I told him no, but i'm getting really scared. Money is so tight that travelling is out of the ques. We feel as if the drs. are giving up and that's it. If at all possible the farthest we might be able to go would be Toronto. Does anyone know of any really good prostrate dr. there with compassion, hope and who doesn't just stop trying to help his patients.  I realize these are far fetched ques. but as i said we're desperate. He doesn't want to think that his time is almost over and I am not ready to give up, I just don't know what else to do. We asked for another psa test since his last one was in April, but dr. wants to wait till he sees us in July. I am so frustrated with our drs.  Please any help is so appreciated. Really scared, Rob and Lifeline.

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 6/1/2008 6:26 PM (GMT -7)   
Hey Lifeline and Rob,

I have followed your story since you came to our forum and am amazed by your courage and determination. Please know that all here are hoping and praying for you both...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
50 mg Viagra + 1000 mg L-Arginine + .03 cc Trimix = Excellent Results
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 6/1/2008 6:46 PM (GMT -7)   
lifeline-

In which province and/or city are you?

-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.


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 6/1/2008 7:48 PM (GMT -7)   
lifeline,

This link may lead you to some help:

http://www.google.com/search?source=ig&hl=en&rlz=1G1GGLQ_ENUS268&q=Prostate+cancer+treatment+Canada&btnG=Google+Search

I sent it to you in an email, too. Let me know if you get it.

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


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 6/2/2008 12:48 AM (GMT -7)   
Rob and lifeline,
I was sorry to hear of the difficulties you are currently facing. I wish I could offer some valuable information. I sometimes wonder about some of the doctors we encounter. I do not understand why many of them cannot give thoughtful explanations about why some treatment may or may not be beneficial and be clear about the lines on which they are thinking. I sometimes think that many of them lose their empathy after they have been treating patients for a number of years. The last thing we all need when seeking information is to have our doctors not convey the hope and confidence we all need. I shall keep you and Rob in my thoughts and hope some of our other members can supply the help you need.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.1 undetectable


hopemylove
Regular Member


Date Joined Apr 2008
Total Posts : 65
   Posted 6/2/2008 4:47 AM (GMT -7)   

Lifeline,

I cannot help with info in Canada, but I can pray for a new hope, a newfound strength and the presence of grace for both you and Rob as you continue to move forward in your fight. If possible, take a moment for yourself to regroup and take a breath. Your health (mental, physical, emotional and spiritual)is essential for Rob to continue the fight. May God hold you gently and guide you to the answers you need.

Karen


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
 
 
 


soxfans4life
Regular Member


Date Joined Apr 2008
Total Posts : 63
   Posted 6/2/2008 5:01 AM (GMT -7)   
Lifeline, You are both held tightly in our prayers for strength and hope and comfort. I don't know about Canada but in my nursing here, often social workers in the hospital can help with financial issues, often getting people medical care they otherwise couldn't qualify for. We will not stop thinking of you, Annie
dx. 3-08  @ age 63. gleason 6 . 1 out of 12 cores positive. 4th biopsy in 8 years. previous 3 negative. followed closley due to family hx.grandfather, father and 2 uncles dx. with prostate cancer. dre negative, cat and bone scan negative. davinci scheduled for may 27, 2008. 2 daughters, retired hospital administration, air force family years ago.


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 6/2/2008 9:37 AM (GMT -7)   
Lifeline-
Unfortunately, there are not a lot of things that I could find online. However, I did find a clinical trial that was just completed. It looks like a pretty solid trial, sponsored by the National Cancer Institute in collaboration with MD Anderson. The results are not shown, but the study sites are listed and maybe you could make a couple of phone calls to get some information. I have absolutely NO experience with this drug, or if it would relate to Rob's case, but I hope that you guys can find something out. Best wishes and God Bless!

http://clinicaltrials.gov/ct2/show/NCT00078845?term=%22Peripheral+Neuropathy+%22&rank=46
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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/2/2008 2:40 PM (GMT -7)   
Hi Lifeline...

Faith, Love and Hope is what I have for Rob. Other members have given you some options. Clinical trials are Rob's best medical options right now. But I will remain hopeful, that he has peace during these treatments. And that you do as well.

My prayers...

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 9 '08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator


Johnny Canuck
Regular Member


Date Joined Jan 2008
Total Posts : 88
   Posted 6/3/2008 7:13 AM (GMT -7)   
Hi Lifeline,
A good friend of mine started this adventure with PCa, and is now in serious trouble with melanoma. However, he started drinking essiac tea a while back and is quite convinced that he is alive today because of it. There are various versions for sale at various prices, but a reasonable priced product...Ontario grown and mixed, is sold ready for brewing. Email me if you want to investigate. I have used it myself as part of a protocol, and my PSA dropped before brachytherapy. This is, of course, all anecdotal, but it was recommended by my naturopath as well, and my oncologist didn't tell me to stop, so...

Good luck to you both,
JC
Age: 54
Gleason Score: 3+3=6
PSA: 3.33
Biopsy:7/8 Positive
Stage: "Bulky" T1c
Prostate Size: 27cc
 
Diagnosed: December 05, 2007
Brachytherapy: February 26, 2008
68 seeds, (Iodine 125). 
 
Walk my path at:
 
 


lifeline
Regular Member


Date Joined Aug 2007
Total Posts : 67
   Posted 6/3/2008 4:18 PM (GMT -7)   
Hi everyone: Thank you so much for your quick response and help. Gordy, we live in Timmins, it's a town in Northern Ontario, 4 hours north of Sudbury. I am looking into the sites given to me that were posted.  I have heard of Essiac Tea and we can buy it here. I'll have to check with our Chemo Oncologist first to be sure there will be no negative interaction before trying it. I can't thank all of you enough. It's so frustrating dealing with these drs. I am going to look into seeing if there is any benefit program that I can get to help financially since going to work will be difficult with Rob depending on me to do so much for him that he can't do himself. I will let you guys know how i make out with the info you gave to me.  Again with everything you are all going through yourselves, thank you from the bottom of my heart.  I hope you all do well with your own fight with this dreaded disease.  Your all still in my prayers. Lifeline  

Johnny Canuck
Regular Member


Date Joined Jan 2008
Total Posts : 88
   Posted 6/3/2008 5:40 PM (GMT -7)   
lifeline said...
 I am going to look into seeing if there is any benefit program that I can get to help financially since going to work will be difficult with Rob depending on me to do so much for him that he can't do himself.
Hi again...have you looked into CPP disability for Rob? And contact the local cancer society to see if they have travelling nurses or such available to help take the load of you both. Also, run it past your MPP's office and see what is out there. Once more, good luck.

Age: 54
Gleason Score: 3+3=6
PSA: 3.33
Biopsy:7/8 Positive
Stage: "Bulky" T1c
Prostate Size: 27cc
 
Diagnosed: December 05, 2007
Brachytherapy: February 26, 2008
68 seeds, (Iodine 125). 
 
Walk my path at:
 
 

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