New to cancer, New to site

[Sixfactorformula]

Hi. I am new to the site. I am 58 and was diagnosed with advanced prostate cancer in July 2017. Gleason of 9. PSA 110. Spread to bone and lymph nodes. Decided to go to MD Anderson since it is a 4 hour drive and I have family in the Houston area. Had nephrostomy tubes placed the first week in August They did the job and were removed in December. Two months of degarelix shots then switched to Lupron. PSA was knocked down to 0.4 until Jan 2018, when it went up to 2.5. Oncologist recommended, and I agreed to begin DYNAMO clinical trial in Jan. In addition to Lupron, I am taking Zytiga, apalutamide, and prednisone. PSA dropped to 0.7. I find out in the next 2 weeks if I will continue with just the current regimen, or add chemo (cabazitaxel and carboplatin) or immunotherapy (ipilimumab).

I am blessed that I do not have any pain and am able to continue working. I also have a very supportive family. I am thankful that I have access to great medical care. I can not describe how impressed I am with MD Anderson. I suspect the other major cancer centers are just as impressive.

I have no idea what lies ahead since everyone is different. My approach has been to take one day at a time and say “ok, what is next.”

In the week and a half, I need to mentally prepare for the possibility of chemo or immunotherapy. I am a little anxious, but will be ready.

I apologize for the long post. I hope to add value in the future and have read some things that have made me think. Good luck to all.

[Tall_Allen]

Most of us get to ease into it slowly, but you got hit with the full blown thing all at once. When I was diagnosed (with a much lighter case) I went into psychotherapy, practiced Mindfulness, and joined a prostate cancer support group - they all helped me cope with it day by day. You seem to have a great attitude, taking it as it comes.

As for the DynaMo clinical trial, it is one of the best I've ever seen for cases like yours- you were smart to go to MDAnderson. You have the opportunity to get many of the best experimental medicines anywhere. Please keep us in the loop as it continues.

[Hidden in reply to Tall_Allen]

Very good!

[ctarleton]

Good luck with whatever second part of the Trial you may receive. Here's hoping that the Trial will be able to provide evidence as to whether these combinations of treatment drugs will work better than using some of them one at a time.

As you probably know, Carboplatin has been around for a long time and has somewhat of a reputation of being a potentially difficult type of chemo - not for everybody, but for some. Be sure to stay on top of things and report ALL your symptoms or possible Adverse Events to the Clinical Trial doctors as soon as you may or may not feel them. Your immediate safety must come first.

The same goes if you should happen to be given Ipilimumab (Yervoy). In a prior study it failed to demonstrate an Overall Survival benefit by itself in advanced prostate cancer when compared to a Placebo, and there were also significant Adverse Events, and even some deaths during the prior study. When used in the combinations in this DYNAMO Trial, hopefully, it may prove to work better. Again, your immediate safety must come first.

Reference:

ascopubs.org/doi/full/10.12...

Thank you for participating in this Clinical Trial.

[wellness]

This is going to be an unusual response. I more or less dropped out of the pharmaceutical medicine game and cured myself with an alternative treatment from Europe: blood ozone therapy. The only other thing I took was lupron. I had a very advanced case.

Your MDs will not know a damn thing about it and will no doubt put it down anyway. If you are going to follow their advice do not pursue this. If you want further information and can convince me you will keep it confidential, contact me. Love and best wishes to you and your family.

Craig

[MrG68 in reply to wellness]

Good for you sir. How long did it all take?

[Dan59]

It sounds like you have a great plan in place. MD Anderson is certainly amongst the best. We are all interested in your trials, please keep us informed. As a message of hope my dx was a little worse than yours nearly 12 years ago, You can see me history by clicking on my profile.

I wish you the best, Please keep us posted.

Dan

[wellness]

I have nothing to defend or promote...just like to mention options

[Dan59 in reply to wellness]

I know, I am sorry, I am so glad you are doing so well, and glad the lupron (pharmacuetical) is controlling your cancer,in addition to whatever else you do.

Best wishes

[ITCandy in reply to Dan59]

Yeah, every time I hear of great success with an alternative therapy, there's always a form of ADT working in the background. I'd love to see any kind of treatment like this bring down your psa by 300 points on its own.

[Litlerny]

Welcome to your new PCa family. Although we are sorry you had to join us, we’re glad you are here to share your story and treatment, and hopefully get some good info and a truckload of support from those of us riding the same train.

You certainly went to the right place for your prostate cancer treatment. I am confident you will get the best care medically possible there.

I checked into them 3 years ago when starting my Stage 4 PCa treatment, but the logistics just didn’t allow for it. I’m 90 miles from the Moffitt Cancer Center in Tampa, and 140 miles from The Mayo Clinc in Jacksonville. I opted for the Mayo, and have no regrets.

Don’t fear the chemo. I just finished a 6 cycle at 3 week intervals course of chemo (docetaxel) yesterday. The side effects aren’t fun, but they are tolerable, and for the most part can be lessened with OTC meds.

Best wishes to you on your journey. Please keep us posted on your progress and the results of the DYNAMO Clinical Trial.

[Hidden in reply to Litlerny]

Don’t fear chemo. ! Encouraging words.Thank you ....

[snoraste]

My reading of Dynamo trial suggests that it's for castrate resistant cases. Maybe I'm reading it incorrectly.

[Tall_Allen in reply to snoraste]

"Two months of degarelix shots then switched to Lupron. PSA was knocked down to 0.4 until Jan 2018, when it went up to 2.5. "

[Hidden]

Long? I’m the long winded author.here Forgive me everyone. We are all different yet the same. Different variables and treatments but we all are in the same washing machine trying to get out the dirt. I. I am 57 with 3yrs treatments. You are well grounded and supported .You have so much to live for. You’ ll do the best always. Good luck in treatments .Keep the fine spirit up. God bless!

[Hidden in reply to Hidden]

Your plan looks good ! Stay the course fine Sir!

[Sixfactorformula]

Thanks to all for the welcome. I appreciate the sharing of experiences that give me insights on what to expect. It does help lessen the anxiety. I also appreciate the positive and supportive tone of this site. I have learned that this cancer affects everyone differently, and the response to treatments also varies. I am at MD Anderson today for a number tests and will find out I the next 7 days what lies ahead.