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Gleason 9 lymph metastasis

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Posted 8/7/2009 4:24 AM (GMT 0)
My husband was diagnosed with prostate cancer, Gleason 9, with metastasis to 20 lymph nodes a year ago. He is on ADT and has had 44 IMRT. Is there anyone in a similar situation?

Post Edited (Palyn) : 8/6/2009 10:28:49 PM (GMT-6)

Posted 8/7/2009 1:30 PM (GMT 0)
My best to you, Palyn, and your husband. That is a very severe set of numbers to contemplate. Hopefully some of the more Advanced case guys will be along soon to help you.

David in SC
Posted 8/7/2009 2:51 PM (GMT 0)
Greetings, Palyn.  Those are tought numbers - we have some guys around who have similar and hopefully they will respond.  In the meantime, please know of our prayers for you and your husband. David

Posted 8/8/2009 8:09 PM (GMT 0)
Would be helpful if you could put the pathology in your signature.

No matter what, keep on trying and looking for answers. Many men on this site have had some pretty desparate pathologies and diagnoses, but they are still posting. Each individual responds in different ways it seems.

God bless you guys !
Posted 8/8/2009 11:42 PM (GMT 0)
Hello Palyn,
Sorry to had to join us especially with your man having having such tough numbers but do not despair. As well as members who chime in here you might find it beneficial to read the many experience of the high numbers fellas on YANANOW. All personal experiences of their treatments and successes written by those with similar figures and pathology. Well worth a visit.
www.yananow.net/Chart-Gleasonu6.htm#8
Best regards and good wishes for his successful treatment,
Bill
Posted 8/9/2009 12:13 PM (GMT 0)
Good morning Palyn. I am a gleason 9 with lymph node involvement and I have been on ADT3 for two years. Just recently got a break from it. Would love to discuss anything I can with you. We can exchange comments here on HW or you can email me.

peace and grace
dale
Posted 8/9/2009 10:47 PM (GMT 0)
Thank you for writing. My husband is going to go on intermittent ADT next month (he'll have been on ADT for 1 year). It's kind of scary considering his situation. Are you on intermittent and if so, is it dependant on your PSA?
Posted 8/9/2009 11:29 PM (GMT 0)
I was not on intermittent. My schedule from the beginning was two years of Casodex, Lupron, and Avodart. My last Lupron shot was March 30th and my last casodex was June 30th. I am still on avodart. The plan right now is for me to be tested Oct 15th and if my PSA is still below .1 we will go another three months. When my PSA gets above .2 we will go back to Lupron. I have no idea how long a cycle like this can work but I am hoping for several years. I will give you some advice to help deal with ADT. Be sure to exercise even when he feels like he is to fatigued. I swim 5 days per week and walk 3 miles at least 4 days per week and ride my bike. When I was sitting around doing nothing depression crept in and I felt my mental acuity going south quick.
Yes metastatic PCa is scary however I believe we can outrun this thing for many many years. Thanks so much for writing and I look forward to hearing from you again.

peace and love
dale
Posted 8/9/2009 11:39 PM (GMT 0)
Yes, my husband is an avid exerciser. He hasn't had any depression since his diagnosis. I'M the one who is depressed! How is your wife handling this situation?
Posted 8/9/2009 11:45 PM (GMT 0)
She actually has done very well. I am a positive upbeat person and I am sure that helps. The toughest part has probably been my lack of sexual desires which creates lack of ability. That is still a problem but she has not complained. May I ask how old you and your husband are? If you would prefer you can click on my name and my email address will appear. It might make it easier.
Posted 8/10/2009 12:27 AM (GMT 0)
Dale, I will email you.
Posted 8/10/2009 2:44 PM (GMT 0)
My father is a Gleason 7 and had lymph node involvement. You can see from my signature that he had both the RP and went on to have radiation and ADT. He has been on Lupron from over a year and a half and I believe has one more shot to go before he takes his HT vacation. Similar to Dale's situation, my dad's team of doctors are hoping that his PSA will stay undetectable off the HT and if needed he will go back on it again. We are hoping and praying that if and when the rise occurs that it will be a long time down the road. My father hates HT and even though he looks fantastic, he has spent the last year dealing with unwanted side effects such as hot flashes, loss of libido etc. He recently started an antidepressant and has seen an incredible decrease in his side effects. Hang in there and keep us posted!!
Posted 8/10/2009 3:20 PM (GMT 0)
Palyn,
I don't need to tell you that your husband has a poor diagnosis. But I can tell you that many guys have done very well for many years with such diagnosis. The steps taken are the right ones and can give your husband a lengthy period of low PSA's. But I would stay on the lookout for new clinical trials and treatments. These may also be a great find. Stay close and we too can watch the clinical trial possibilities and share them with you...

Tony
Posted 8/27/2009 6:20 AM (GMT 0)
Palyn

I am similar but lymph involvement is quesionable. Initially Gleason 10. my story and journey is on my website
www.gleasonscore10.com

My wife is 49 and she is my rock through out this journey.

Stay positive and pray that new drugs are out there for the near future.

Rich
Posted 8/27/2009 5:00 PM (GMT 0)
I am the wife of a husband who was diagnosed at age 50 with a gleason 9 and bone mets - he is the rock I am the noodle but doing better- the initial shock of the diagnosis and the realization is what is the worst and then things get better you do what you can do and it is what it is.  Hormone Therapy worked for a while, then Chemo didn't work - now he is on a different type of chemo and in a clinical trial - yesterdays apt showed the tumor load has dropped  He has some fluid that needs to be drawn off and should be done today or tomorrow and then he should be feeling better.   Everyone handles treatment differently.
Posted 8/27/2009 5:32 PM (GMT 0)
Amy, I will specifically remember you and your husband. Sorry he is going through so much, if you have to draw your strength through him, then so be it, it will make you stronger for him.

david in sc
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