New Guy needing help

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PK
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/20/2009 3:44 PM (GMT -6)   

I hope I did this right.

I’m a brand new member. Discovered the site a few days ago. Diagnosed 12/08 - T1c - Gleason score of 6 . Had a consult with the urologist I’ve been going to since 2004. Going in I was thinking of the DaVinci, since I heard such good things about it. There is one locally since August. After an hour and half of presenting options for my cancer type, we both agreed on seed implants with External Radiation for 5 weeks before the seeds. I feel that is a good fit for me.

On January 12, I developed blurred vision in my right eye and got in to my eye doctor. Had a detached retina and luckily was able to have surgery the next day. So far so good. It is reattached and my vision is 20/60 in that eye(was 20/30). My surgeon doesn’t want me to put any pressure on that eye. So now I am waiting to get a release from him to start my journey with the prostate cancer. My urologist will set up the appointment with a Radiation Oncologist when I get released.

My question is, What happens when I get to the Radiation Oncologist? Very unclear about the next steps. What happens next, what questions do I ask, etc. Any help will be appreciated.


Age 60

2004 -Trace of blood in urine - DRE always normal

Sent to Urologist - No blood in urine

PSA 7/4 3.8 - 8/5 2.2 - 8/6 2.9 - 8/7 6.9 started Uroxatrol 2/8 - 5.8 & 11/8 - 5.2 - Biopsy scheduled -

1 core of 12 positive Gleason score of 6 - T1c

Urologist and I agreed on Brachytherapy

1/9 Detached retina and surgery

2009 Feb. PSA 4.2


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 2/20/2009 3:50 PM (GMT -6)   
Welcome,

It is clear you have decided on a treatment.

I have had both IMRT and a saturation biopsy which is the same thing as a brachy implant except they take tissue rather than implanting seeds.

Neither of these treatments effect your vision to my knowledge.

I think the reason both treatment are being prescribed is that your cancer is not contained, so they want to get the local ocurrance with the seeds and to deal with the bit which is out of the capsule with the IMRT. A very common treatment.

Please tell us more.

Scott
Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07 robotic
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 PCA3 negative
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 2/20/2009 3:53 PM (GMT -6)   
PK, welcome here to HW, glad you found us. As usual, sorry you have the need ,but glad you are with us. With have one well versed in Brachytherapy, and hopefully, as usual, he will come along and read your post Too bad about your retina, but at least its being taken care of. We look forward to hearing from you of your journey, and we are here to help and support you best way we can.

Thanks,

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 2/20/2009 4:25 PM (GMT -6)   
Welcome PK...those that have chosen your route will chime in soon. Can't answer any of your questions, just wanted to say Hi.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA 5 week Oct 2008 <.05
       3 month Jan 2009 .06


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 2/20/2009 5:07 PM (GMT -6)   
The biopsy T1c staging would indicate that the docs believe the cancer is confined within the gland. Seeds to nuke the prostate and external radiation to the prostate bed in case the staging may be incorrect. Sounds like your doc is taking a cautious approach. Having had surgery though I can't help with the radiation details but others here will. My best wishes for your treatment.
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 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01


sandstorm
Regular Member


Date Joined Dec 2008
Total Posts : 194
   Posted 2/20/2009 5:52 PM (GMT -6)   
Welcome to the board PK, just sorry you had to join. I cannot help on the radiation treatment but so many here can. You have come to the right place. I can only offer moral support and wish you the best of luck in your journey.
Age at DX 57
5-18-07 PSA 7.7
5-06-08 PSA 4.6  8% free psa, but stable
10-23-08 PSA 5.65 4% free psa
11-04-08 biopsy
11-11-08 2 of 12 cores positive
Gleason 3+3  6  stage t1c / post-op 3+4  7  stage t2c
CT and Bone scan negative
Da Vinci RRP 01-09-09
Catheter removed 1-15-09
Pathology Report says it's gone!
First Post-op PSA due 2-17-09


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4081
   Posted 2/20/2009 6:15 PM (GMT -6)   

Hi PK:

Per my usual cue from David in SC, I'm the one that usually chimes in about now.  I had the brachytherapy treatment a little over two months back and all has gone well.  I have posted a long-winded story called "Tudpock's Brachytherapy Journey" on this forum that I would recommend you read over at your convenience.  It will give you some insight into my thinking and my recent experience with brachytherapy.  If you can't find it, let me know and I'll bump it up to the front for you.

Beyond that, I have a couple of thoughts for you:

1.  As opposed to Scott but in line with BillyMac, your stats as presented would most likely indicate that the cancer IS contained.  You certainly should ask that of your uro and radiation oncologist, but that would sure be my guess.

2.  Re both external radiation and seeds, I suggest you qustion your radiation oncologist very intensely on that.  With your stats that would seem to be a somewhat aggressive treatment plan.  I had that discussion with my docs and ultimately opted for the seeds only.  Again, that was MY case and not yours, but the projected outcome of my treatment plan was the same as it would have been for surgery.

3.  Whomever you choose, please, please, please make sure they have tons of experience.  By that I mean at least 300 procedures.  That goes for radiation docs as well as surgeons.  The data is clear that the experience of the physician is KEY to your success.

Let me know via this thread if you have more specific questions; I'll be glad to help if I can.

Good luck!

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 1/31/09.


PK
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/20/2009 6:27 PM (GMT -6)   
Thanks for all your support.  You also have mine in the future.  Thanks to Tudpock for your great advice.  I will certainly ask about the aggressive treatment plan.  I know that my urologist has done almost 400 implants.  I will read your journey also, thanks.

Age 60                                                                                                            2004 - trace of blood in urine- DRE normal.                                                         Sent to urologist -no blood in urine since                                                              PSA 7/4 3.8, 8/5 2.9, 8/7 6.9 (started Uroxotral), 2/8 5.8, 11/8 5.2,                       Biopsy 11/8- 1 core of 12 positive - local opinion unclear, second opinion from Utah, diagnosed Gleason score of 6/T1c                                                                        PSA 2/9 4.2,


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 2/20/2009 6:53 PM (GMT -6)   
Tudpock, you crack me up, next time, I will give you the full honors of giving your name to anyone asking about "seeding", you deserve that much for what you have been through.

David
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 2/20/2009 7:08 PM (GMT -6)   
Dear PK ...."A good fit" .....What does that mean..?? Sorry, please rethink your plan. You have pretty low numbers and are young...We went through the whole thing with about your numbers and age.....eight years ago,....read below. Surgery may be better for you....Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Hip replacement total success..pain gone!!
PSA .7 2/10/09


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 2/20/2009 7:11 PM (GMT -6)   
Scott, for curiousity sake, what was in PK's post or stats that makes you think that his cancer isnt contained at this point? 4.2 psa, 1/12 core, gleason 6, on the surface, that's pretty low grade if accurate.

David
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4081
   Posted 2/20/2009 9:32 PM (GMT -6)   

Dear PK:

Glad to help in any way I can and, just so you know, I have no agenda re trying to talk you into brachytherapy as I get no commissions on the procedure!!! It was a good choice for me and I try to provide info as best I can.  Only you can decide whether or not it is a good choice for you and, for that reason, I always advise guys to seek opinions from multiple disciplines before finalizing a decision.

With due respect to Diane, whose husband has been through an awful ordeal, I can easily understand your statement about "good fit".  With your stats you have multiple options and are a poster boy for surgery or traditional radiation...or other treatments for early stage cancer that you might explore.  With continued respect for Diane, she clearly encourages people to go for surgery because of her hubby's post-radiation problems.  Your stats are NOT similar to Pete's in that your PSA is much lower, your Gleason is lower and you have no recommendation to start any hormone therapy which her husband did from the start indicating more serious issues than you have.  Finally, her story got so much worse because they chose salvage surgery after radiation...which is not something I would EVER advise anyone to do.  You should ask your radiation doc and your uro about that...

There are tons of stories of major problems after any of the procedures.  This is primarily a surgery site and, while most of the guys here who have had surgery still recommend it, there are plenty of horror stories as well.

What you should do is exactly what you are doing...research the heck out of this darn disease, including treatment options and quality of life, meet with experienced docs whom you trust, then make the best informed decision you can.

There are plenty of great people on this forum who will help you get thru it.

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 1/31/09.


PK
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/21/2009 9:48 AM (GMT -6)   
Thanks Tudpock! Your advice & support has been really helpful & I know that all of you will help me get through this.

Age 60                                                                                                            2004 - trace of blood in urine- DRE normal.                                                         Sent to urologist -no blood in urine since                                                              PSA 7/4 3.8, 8/5 2.9, 8/7 6.9 (started Uroxotral), 2/8 5.8, 11/8 5.2,                       Biopsy 11/8- 1 core of 12 positive - local opinion unclear, second opinion from Utah, diagnosed Gleason score of 6/T1c                                                                        PSA 2/9 4.2,


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 2/21/2009 11:05 AM (GMT -6)   
Tudpack, You are correct in your post , and I totally agree with you and everything you say.... You only had the seeds....I was questioning the agressiveness of the double treatment . Pete did have higher PSA 16 and higher gleason, but it was still contained at that point.... ........You are always very helpful and very informed...David is right asking for your input...and I will be more circumspect in my responses about radiation. I still will be strong about the salvage surgery part though...!! :). Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Hip replacement total success..pain gone!!
PSA .7 2/10/09


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 2/21/2009 2:59 PM (GMT -6)   
Purgatory said...
Scott, for curiousity sake, what was in PK's post or stats that makes you think that his cancer isnt contained at this point? 4.2 psa, 1/12 core, gleason 6, on the surface, that's pretty low grade if accurate.

David

The fact that the Dr. is prescribing a primary local treatment with a followup to the region cause me to suspect the Dr. thinks it is not contained, otherwise why prescribe such a treatment.
 
Scott

Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07 robotic
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 PCA3 negative
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 2/21/2009 4:05 PM (GMT -6)   
Sorry Scott, don't follow your logic still, but that's ok.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 2/21/2009 7:31 PM (GMT -6)   
Purgatory said...
Sorry Scott, don't follow your logic still, but that's ok.

David, its called deference to the Dr.
Regardless of what the member has posted the facts are that the Dr. has prescribed two treatments on top of one another the only reason for which is the Dr. is incompetent or he suspects the local treatment is not sufficient.  I chose to grant the Dr. the benefit of the doubt and infer that he believes there is a chance that the cancer has spread beyond the scope of the local treatment.
Hoping this makes my interpretation clear. Scott


Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07 robotic
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 PCA3 negative
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 2/21/2009 7:39 PM (GMT -6)   
Scott, perhaps there's a third choice beyond the two you state, I wouldn't assume that dr. is incompetent as one of the choices in this case. I think we will just have to agree to disagree on this one.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4081
   Posted 2/21/2009 8:16 PM (GMT -6)   

Actually, there is a perfectly reasonable third possibility as to why both radiation treatments are sometimes prescribed and it has to do with the amount of caution that a doctor may choose.  Sort of like a surgeon choosing to take both nerve bundles "just in case" or a doctor recommending a total mastectomy instead of a lumpectomy.  These docs don't necessarily suspect that the cancer has spread but they value cure over quality of life issues...not wrong, per se, just a different perspective than others may have.

I'm not suggesting which of the three choices is the case with PK's urologist. Only that he quiz the radiation oncologist (whom he hasn't even spoken with yet) about the treatment in order to understand the reasons the uro might have recommended dual treatments.

Tudpock

P.S. to Diane:  Yes, I agree with you totally re salvage surgery.  And, while I know you and Pete regret that choice today, I hope you don't beat yourselves up too much about it.  There is much more info today about the possible repercussions and I think any reasonable person might have made the same decision you did given the situation.


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 1/31/09.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 2/21/2009 9:49 PM (GMT -6)   
Diane, I agree with Bro. Tudpock above. Most agree that as a general rule, that salvage surgery after radiaton is not a good combinaton, but at the time Pete/you decided on that course of action, it very well might have made perfect sense on what you knew at the time, and how you were being advised, and what ever viable options you had less. To be real honest, had I not been through 35 days of intense radiaton in one of my prior cancer expisodes, I might very well have gone the radiation route first. When my dr. gave me the dx. for pc, I told him almost immediately, that I was far more afraid of having radiation again, then I would be of surgery. So that kind of by default kept me away from making a radiation first decision with my PC. Even though the former radiation ended 9 full years ago, I still have effects to this day, and bad memories that I havent been able to entirely eradicate. I am so glad that Pete is doing as well as he is, cancer wise, and with his hip replacements.

David
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


stxdave
Regular Member


Date Joined Nov 2008
Total Posts : 65
   Posted 2/22/2009 12:31 AM (GMT -6)   
Hi PK,

I am not going to second guess your radiation oncologist about the need for external beam radiation combined with bracytherapy. This double dose seems to have gained popularity in recent years. Everyone's case is different and is difficult to compare to someone else's treatment.

I had 42-3d- EBRT treatments combined with Casodex and Lupron. The thing we were told to be most concerned about is protecting your bladder and bowels from collateral damage. We drank a lot of water prior to each treatment for protection. The external beam radiation techniques and equipment have improved dramatically and there is not supposed to be as much collateral damage as there used to be. I would still ask the radiation oncologist about it though.

I can't help you with bracytherapy.

Dave
Dx'd 1999, Age 60, PSA 43, Gleason (3+4=7), T3c
42-3d EBRT w/Lupron/Casodex for 24 months and PSA remaining to be <0.1 for the entire 24 month period.
July 2001 - 2nd opinion required to go intermittent ADT.
MDAnderson biopsy revised Gleason (4+5=9).
Intermittent ADT, Lupron only, with PSA threshhold established at 1.0.
March 2007 - Diminishing returns with Lupron, conferred with MDA urologist for bilateral orchiectomy. Uro asked for biopsy of prostate again. Biopsy resulted in tumors found with Gleason (5+4=9).
August 2007 - RRP and bilateral orchiectomy. PSA <0.1
99% continent immediately
September 2008 - PSA 0.45
November 2008 - PSA 0.67
December 2008 - Resume Casodex
December 2008 - Stricture in bladder neck requiring surgical removal. 99% incontinent immediately.


Life is not waiting for the storm to pass, it's learning to dance in the rain.

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