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Hello and Update from Sonny

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

My Fellow PCa Brothers and Sisters,

It has been far too long since I have been here, and for that I apologize.

There hasn't been much to update or report and Lynn and I have been traveling quite a bit in the new RV. In fact we just got back from a 4 week trip. Lynn really enjoyed the traveling by RV and it kept her away from public transportation and hotel rooms. As most of you know she is a Multiple Myeloma cancer patient and with her past stem cell transplant has a very compromised immune system.

Not much has changed for me as regards PCa. My latest PSA is still hovering in the 1.2-1.5 range and came in at 1.3 last week. Tomorrow I start radiation on the MET that was found on my leg at the top of the femur where it meets the hip joint. The RO plans for 10 treatments over the next 2 weeks. The necessity to radiate it now is because it is in a major weight bearing location and as he says, "you don't need to break your leg climbing in and out of your RV".

My last meeting with the Oncologist, in May, has him somewhat puzzled that my PSA is still hanging in there after the surgery and IMRT. We ran extensive tests and the only thing that was found was the leg MET. Hence the appointment for radiation.

We discussed HT therapy but are holding off on doing anything until after the radiation therapy is concluded. I am still not a fan of HT and am going to need some heavy convincing that my life is in imminent danger before I jump on that trail. My RO and I discussed the PSA numbers in our meeting last week. He said that in his experience, and in the absence of anything other than the MET, it may just be my number for future reference. There are a multitude of things that could be contributing to the stubborn danged PSA number. As we all know, each of us has PCa that acts differently, we all respond differently to each treatment and the side effects, i.e. ED and Incontinence. So we'll continue to monitor the PSA and be diligent in future testing to make sure that nothing surprises us or gets out of hand.

So at present the plan is to complete the rad and follow up with PSA testing.

Lynn and I have another trip planned for September. We are starting off by going from Orlando to Niagara Falls and then heading to points East and North, ultimately bringing us to Maine for the fall colors. In all this trip should take us about 6-8 weeks.

My personal mantra still remains, "EVERY DAY IS A BONUS". And Lynn and I are committed to enjoying every one of them for as long as we are able.

Bless you all my friends and our prayers are with each of you as you travel your own path and journey through life affected by PCa,

Sonny and Lynn

60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -scheduled
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.
7/27/10 PSA test 1.3 - Begin radiation for MET on leg

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Sonny

Sorry that you're still strugling with all this. I wish you the best of luck for the next step in your journey and the next trip is certainly something to look forward to. Hopefully you nail that sucker on your leg and get those PSAs down.

YTW's picture
YTW
Posts: 67
Joined: Apr 2010

Sonny:

I am fairly new here so this is my first post to you. Let me 2nd Kongo's post. I was diagnosed in late March and am scheduled to begin CK next week. My wife Betty and I are also planning to tavel later this fall. Will start off with a Navy reunion in Buffalo
in late September and then on to Nova Scotia & Nufinland for some lobster.

Jimmy/Cleveland

mrspjd
Posts: 694
Joined: Apr 2010

Hi Sonny,
Just wanted to say thanks for your update because so many posters just disappear from the forum and we never know how things worked out. I've enjoyed reading your posts and have learned alot from them. We have even seen one of the doctors that you previously saw and that you wrote about awhile ago. Sending you all the best in your and your wife's continuing journey, both on the road and on the road of life.
Sincerely,
mrs pjd

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Sonny,

Wishing you the best as you move forward. You were one of the first people that responded to my initial post and you provided me with so much good information/advice. Thank you for all you have dond for me and for many other posters on this board. My thoughts and prayers are with you.
Joe

bdhilton
Posts: 767
Joined: Jan 2010

Sonny,

Like others you were the first to greet me here on the beginning of my journey...Sorry to hear that you keep running into so many challenges...Keep the faith and yes every day is a "bonus".... I wish your wife the best with her Multiple Myeloma...My mother was diagnosed with this beast 26 years ago and she is still going strong at 83 going on 84...
The best to all in our journeys

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

I appreciate your kind words of support. Sorry I have been absent so long, but there has been a lot on my plate for a while.

It makes me feel good that some of you write about my posts to you in the past. I received so much support and information from this site that it is my hope to be able to give back the caring support I received for many years to come.

We are all in this together and only we and our families who are affected by PCa cancer can truly understand the highs and lows of dealing with it.

Completed Day 1 today and it should not present any issues. I am being treated on a Varian 2300ix machine ( a web search brought info on it's great use for delivering IGRT/IMRT). I will receive 3000 centi-Gys over the 10 treatments delivered at 300 cGy per day. It is a cool machine. I lay on the table and they align me with the tatoos that were placed last week in my setup/simulation appointment. They machine head rotates in a vertical 360 degree radius. They take one xray from the top and one from the bottom to insure alignment. Then they deliver the radiation in the same manner. A zap from the top and a zap from the back side. In and out in under 15 minutes.

I really don't think there will be much to report on this except to same that the 10 treatments are over. Nothing at all like the 35 I went through for the SRT and I don't expect any side effects at all.

Thank you again for your support,

Sonny

fathersson's picture
fathersson
Posts: 121
Joined: Nov 2009

Hey Sonny,

Great to hear from you and fantastic that you have been doing some touring.. The guy up above sure gave us some beautiful things to look at dont ya think? We just need to take that minute or two to look. Sounds like you are doing just that.

Best,

Frank

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

Frank,

Yes we certainly have much to be thankful for and there are indeed some really beautiful things about life that we don't take time to see. We've all heard it before and yet don't take heed, that it takes something of this magnitude to make us stop and look around and truly enjoy life.

Lynn and I are both guilty of this and yet take nothing for granted anymore.

Sonny

randy_in_indy's picture
randy_in_indy
Posts: 495
Joined: Oct 2009

Like you have said in the past and I totally believe...Pca makes you a better person....

Randy in indy

JR1949
Posts: 230
Joined: Jun 2009

My wife and I can attest that having a serious illness like prostate and recurrent melanoma cancer does make you a better person. We are both cancer survivors and give the glory to God. I had prostate cancer March 2009 and my wife had recurrent metatastic melanoma cancer June 2009.

We talk about how we both treat our neighbor better and are slow to anger. We now have a greater appreciation for the things in nature all around us like a beautiful sunset, a cloud formation, a rainbow, a mountain stream, the view from the mountains in the Great Smokey Mountains just to name a few. We just appreciate the little things in life that we previously somewhat took for granted.

JR

lewvino's picture
lewvino
Posts: 1010
Joined: May 2009

Do you live near the Smokey Mountains?

Larry

NM
Posts: 214
Joined: Jul 2009

Good to see you post again and I too believe every day is a blessing but I disagree on one subject mentioned here and that is cancer has made me a better person and appreciate life more.

I personally hate cancer and wish I was never diagnosed as the side effects have royally screwed up my life. I am 53 and well you all know the rest. I wish I was a completely cancer free *** hole but I guess that cant be. A little tongue in cheek humor. Hope I offended no one but I have decided to state my opinion in life and you either like me or not.

Sonny prayers to you and yours as always,
Nick

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