Latest update

[Oskie53]

We went back to the oncologist on Friday. A week after his first infusion of Jevtana. After reading all of your responses ( thank you all so much ), I asked the Oncologist about adding Carboplatin to his Jevtana. He went back and looked at a genetic study done on him at the onset of diagnosis and said that my husband has a ATM mutation. Because of that he was not opposed to adding the Carboplatin with his next infusion on December 6th. He did additional blood work for more genetic studies. He said a Parp inhibitor (?) might also be something to try. I also told him I was sure all the muscle pain and numbness around the mouth was due to having a low calcium. Sure enough we got a call on Saturday that his calcium was definitely low and they advised adding 2000 mg every day. I am beginning to think that we have to be our own advocates for optimal health care. It’s frustrating when I feel I have to suggest potential changes in his treatment. His PSA on Friday was 2200. It continues to climb. I know we may be fighting a losing battle but if there is a glimmer of hope that we can reduce the liver lesions I’ll be thrilled. He continues to be very tired but insists on continuing to work. I think it gives him a reason to keep fighting. Again thank you for all your support. I feel less isolated knowing other people understand what a horrible disease this is and how difficult it is for our husbands and all the people that love them. Wishing all of you a happy, blessed Thanksgiving.

[Tall_Allen]

You should take pride in your ability to help.

[noirhole]

You are your best advocate. This forum will educate you to challenge your doctors. Remember your doctor consults with 4 to six patients an hour day after day week in and week out and at most hospitals they are treating all types of cancers. Read, educate, challenge, and repeat. When you feel that you cancer has outgrown you doctor find a research hospital and keep your home doctor informed. You will be happier knowing that you are more in control.

[tallguy2]

You are absolutely correct. We must be advocates about our care, or that of a loved one. I read enough here on this forum, with the Prostate Cancer Foundation's annual pdf file for prostate cancer, Tall_Allen's blog, and the NCCN guidelines to be informed enough to understand much of what my specialists tell me. My urologist and my research MO both told me that I am the only patient that ever asked for clinical trial numbers for trials that I might qualify for (so I can read the entire document). If we are after more than the "standard of care" then, indeed, being an advocate is a must!

Blessings to you and your family at Thanksgiving.

[vandy69]

Good Monday Morning Oskie,

In my 7+ years battle I have had about everything. Had ATM defect which qualified me for the PARP inhibitor Lynparza. Lynparza gave me about 9 months before cancer worked around it. Just completed cycle 4 of round 3 of chemo with Docetaxel/Carboplatin combo (16 total infusions). Chemo PLUS Xtandi is working for me.

Best Wishes. Never Give In.

Mark, Atlanta

[VictoryPC]

I admire you courage and fortitude. You are a great example for all of us.

[AlmostnoHope]

His biggest strength is you. He is a lucky man.

[j-o-h-n]

You're a savior.... Bless you both....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/18/2019 7:56 PM EST

[Kaliber]

My best thoughts ( transfer of merit) are with you and your hubby. He’s really lucky to have someone like you there to stand with him. Here’s hoping that treatment will knock down some of that dang blasted psa.

Hang in there , you are both strong.

Best wishes for you you got this 💪💪💪💪

[zengirl]

how is he doing? I am right there with you.

[Oskie53]

Not great. His calcium continues to be low so he has a lot of muscle spasms and esophageal spasms. His last PSA was 2298. I see his energy decreasing on a daily basis but he refuses to quit working. He comes home and goes straight to bed many days. Last night he had horrible back pain but it quickly subsided with rest. He has insisted we take a cruise Christmas week and I am dreading it. I just hope he does ok. At this point I just support whatever he wants to do. I tell myself we are making memories for me to hold onto.

How are you doing?