Strength in Numbers...

~~~~This~~~~~~~~~~~~~~~~~~ ~~~~~is~~~~~~~~~~~~~~~~~~ ~~~~~~~a~~~~~~~~~~~~~~~~~ ~~~~~~~~rainbow~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~   I knew we would find a rainbow………………….and this little bluebird is soooooo happy!!!!!!!!!!!   Hi Mel ~ Here is a huge hug for you!!!!!!!!   and here’s yours too John.    0~0~0~0~0~0~0~0~0~0~0~0   I think this calls for one of daveed’s   ((((((((((((((((((( G R O U P H U G )))))))))))))))))))))))     I’ll be back…………   chirp chip  

This is so good to hear - you have a direction and a doctor who is positive. You must believe, now, that even as a "guinea pig," you'll be talking about it 50 years from now. We are all so fortunate to have the advantage of knowledge, which helps us understand the exact steps we must take. No options are exactly "pretty," but our human spirits can deal with quite a lot - with the help of friends, family, and guidance from professionals (and from above!).

Sounds like quite a family you have - and so much to look forward to! Good luck! We're all certainly here to ride this one with you.

John,

I spent an half an hour or more reading over your journey. Incredible, scary, frustrating, hopeful and so many more emotions. You are a strong man and truly appear to be handling it well. I feel ridiculous when I complain about not achieving an erection yet! My cancer was contained, my last PSA was undetectable, and I am thankful. Your journey reminds me of my father's journey. He suddenly had severe back pain and went to the emergency room. They discovered he had a large tumor on his kidney. They removed the entire kidney and it looked contained and he felt great. 3 months later they found a tumor on his lung and classified stage 4 renal cell carcinoma. Of course, I immediately began research finding very grim information. Does not respond to chemo, average life span once diagnosed is 2 years, no cure and etc. Depressing! My dad was only 62. We all responded like your family probably and started the intense prayers and research. He came across a few quacks and then finally a good Urologist. He became depressed as he did his research on this type of cancer but would bounce back. All the information can be so overwhelming as you experienced. He too, ended up trying experimental drugs. He has had his ups and down but is doing great 3 years later! He is a positive person like you and though his cancer is a very aggressive one, he is loving and appreciating every day. He and my mom are going to Hawaii in February for thier first time. So, keep your chin up and keep asking your docs as many questions as it takes to get the answers you need. You must feel confident and comfortable with your physician. That is very important for your well being and peace of mind. After one year, my Dad switched oncologists even though it was the same practice. That helped his spirits tremendously having someone listening to him better and answering all his questions with patience.

Ironically, I now see the same group of Urologists he does. In fact, because of his cancer and the fact his dad (my grandfather) also had kidney cancer, I was motivated to have a routine physical which led to my journey of prostate cancer.

You are in my prayers, keep us posted. As you have discovered, the people on this forum are so very supportive and have helped me tremendously. I need to be more a regular so I can keep up and offer support as well. I have a strong feeling you will be of good health for a long time and all the prayers will help you and your family with this journey.

Michael

John,

My thoughts and prayers are with you, but I can see you're a very strong positive thinking person and I'm sure will be fine and live a long and happy life with Mel.

Wow 5 grandsons at the age of 55..someone's been very busy!!! 

John, Mel,   &   Friends,   I hope no one minds me pulling these in from a different thread…. I truly want to be able to see the whole journey they are on…..   Let me know if I need to go in and delete this …   I don’t want to step on toes….. BUT      I do want to step on John & Mel’s stepping-stones with them!!!     11-16   Quote posting from John *jeb187chs* on Thread: Gleason 8-10 started by Pooks6719   Pooks6719, My Gleason was first estimated at 8 from biopsy but ended up 9 at post-op pathology. My PSA was over 16 before surgery, but...... because my bone scan, cat scan, pet scan, lung x-ray etc. all came back clear we decided on surgery. After the pathology though based on the pathology the doctors suggested I seek further treatment. My PSA post op has gone to 0.2 and stayed there for over a month. My Prostate cancer had penetrated the sheath and invaded the seminal vessicles and bladder neck..... but thank goodness had not spread to the lymph nodes that were also removed. I start after Thanksgiving on a clinical study using hormone and chemo or hormone therapy alone. It does not preclude radiation and I expect to have it whenever my oncologist decides it is time. I am a big believer in second opinions and I will continue to have followups by at least two oncologists during my treatment. The way I look at it.... I am not giving up and I won't let them do it either. We had a problem with one radiation oncologist and consulted another and truly got a new lease on life and feel we are on a "good" path now. Hang in there as our friend Bluebird says this is perfect place to find "rainbows" and "hugs" when your days are dark and gloomy. People here are blessed by the others in this forum. John     11-21 Quote posting from John *jeb187chs* on Thread: Gleason 8-10 started by Pooks6719   Dreadnought, The side effects of the study, which by the way I qualified for now that my PSA has held at 0.2. The hormone therapy is supposed to put the cancer cells "to sleep", supposedly the prostate cells most often do not continue to grow and multiply when the testosterone is reduced by what amounts to "chemical castration". The good thing about this compared to physical castration is that it can be stopped and allow the production of testos to start again. The side effects..... loss of sex drive, possible hot flashes, possible loss of muscle mass, and thining of bones. Usually short term these side effects disappear after the treatment ends. The treatment usually runs one or two years. If I get the chemo leg.... half get chemo half don't, the side effects of chemo can be loss of appetite, vomiting, and possibly loss of hair and anemia. But these last ones are less likely with the chemo for prostate cancer. The doctor says most participants have little or no side effects. The radiation if we do it while in study, can add other side effects. Possibly affecting continence, sex drive, bowel function etc. BUT the bottom line....... we'll be killing the little buggers, extending life, and delaying the possible reoccurance of the cancer. In my mind I have to do everything possible to achieve this. The nomograph based on my pathology, gleason score, and pre-op PSA indicates a 95% likelyhood of reoccurance of the cancer. Not pretty but that's the way I understand it. If anyone else has any comments I'd love to hear them. I am determined to beat this. John   Give those little buggers the best shot you've got....... John!!!!!!!!  We're adding our strength to you and Mel ~ to add to the fight!!!  A fight we plan to win   hands down!!!  In Friendship ~ Lee & Buddy    

John and everyone
Happy thanksgiving to all and prayers to everyone. John remember if you need anything I am here and close. You are going to beat this. I know in my heart and soul you can do this. Look forward to someday you and I getting together and celebrating this defeat with our cancer.
Rick

Bluebird, Arcafan, WSicket, Hamala, and other wonderful prople,

Well I started the treatments today, drew the arm of the study for hormone and chemo. I get chemo every three weeks for 6 cycles and hormone injections every three months. 2 Prednisone pills to work with the chemo and a hormone pill to work with the implant every day. Start radiation at end of chemo.

Feeling fine today. First hot flashes and green urine. Blood work in two weeks then back for blood test, 2nd treatment and dr. appt. again in 3wks. I feel like I have a plan and we're finally working it.

Die "bugger cancer cells" die.......

I really appreciate all the caring thoughts, prayers, and "online" support. I must sound like a record but you guys are the best. This is unexpected path and maybe unnessary IF we got it all with the surgery but with a 95% chance at recurrance it seems like the only right thing to do and it might help others down the same road now and later.

By the way this is a national clinical study and it is available all over the place. If anyone is interested it is NCI study CALGB 99904 (you can Google it.)

I will be back to post and maybe open a new thread to document this portion of my journey, it gets complicated when a thread goes over one page.

Sincerest thoughts and prayers for all who are fighting this deadly foe.

John

"Die Bugger Cancer Cells, Die!!!" I hope you kill every single one of 'em. Kill 'em dead!!!

Death to all the little SOBs,

Bill

"Die Buuer Cancer Cells, Die!!!!!!!!!!!!!!"

John, I've been here the whole time but just didn't know what to say. Your courage inspires me! I'm sure your family is very proud of you as we are. You are my hero!
Hang in there Bud!!
I'm routing & praying,
Your friend, Pete

John-
I just wanted to say that I am thinking about you and your family is in my prayers. My story is under New Member/Case. My 61 year old precious daddy has PC and it came back after surgery. We too have started a Clinical Study. We drew the arm of Taxotere Chemo with a high dose of Vitamin D. Taxotere Chemo was approved for PC in 2004-which is why many people say it does not work, but things have changed. Hopefully, they will get better and better with chemo for PC-as it does keep the cancer from spreading, and I'm hoping to put the cancer in remission at the least. We get our second treatment today. I'll post later on my own thread about what happens and my talk with the doctor. I will be saying "Die Bugger Cancer Cells-Die " :) Please keep sharing your story with us...I will do the same. Stay strong and positve, and let God and your family carry you through(and us). Clinical Studies are a good thing-our oncologist highly recommends it, and we really like and trust him.
Lisa

Bluebird and Whispers,

We had a terrible ice storm in the St. Louis metro-east area..... like and inch and half of ice. We were without power for three days..... colder then crap..... burned firewood in stove in one room and prayed for electricity. Not a lot to do with kerosine lamps, flashlights and candles. We were lucky though some haven't got power yet.... we just got Charter and internet back today so I haven't had a chance to catch up on the chat.

Went to have a blood test today, second chemo treatment next Tuesday. Only effects with it so far is "hot flashes" from hormones and what I call "peeosis", long walk to bathroom at work. My staff is laughing at me, almost hourly I need to make the "journey". Has me up at least three of four times a night too, cutting down on my beauty sleep. But the good news is I feel fine so far.

Whispers.... so sorry to hear about your dad's re-occurance.... we can beat this. Just keep repeating with me "DIE bugger cancer cells DIE". Yes I agree the clinical studies are a good thing even if they can learn something it may help others like our kids or grandkids. But I'm going to think positive and still think "cure".

Speaking of grandkids.... I have a beautiful new grandaughter.... Keziah Elise.... born last week she lives with our son and daughter-in-law in Providence, RI. That makes 8, five boys and three girls.

I appreciate you all and my most sincere thoughts and prayers go to you and yours.

John

Bluebird and all,

Had second chemo treatment today, all blood test look good, lost one pound, blood pressure and all ok. They said I am doing real well. This one really whipped me today though, feel real washed out. Going to rest tonight to hopefully pick it up tomorrow. No ill effects... just a few hot flashes and tiredness. Appetite is fine and food taste normal so far.

I feel real lucky and fortunate I all of you and my medical team on my side. I appreciate your caring remarks and prayers. At the chemo treatments you see so many affected so severely by this incredibly insidious disease and feel so lucky to be as well as I am.

I still say "die bugger cancer cells die", may all of my friends here be as dedicated and determined to beat this. I think I am doing everything I can to beat it and will continue to do all I can to help others.

John