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[SweetOne]

Hi everyone -- I am new to this site but have been following the site for men for quite some time. A little history on my husband's condition -- dx in January 2008 followed by radical prostatectomy and 37 radiation. PSA on the rise in 2013; diagnosed with metastatic prostate cancer to bones in 2014; diagnosed with small cell liver cancer in 2015. Doug is currently on his third round of chemo (Jevtana) and just finished the fifth of six treatments. Starting to feel like we are running out of option treatments and are hopefully for a longer remission time between treatments this go round. I look forward to being a part of this community and the support it provides.

[TNCanuck]

I'm new too, and so glad we now have this option!

Prayers that your Doug will get to a new, much sustained remission soon.

Here's a little background on my hubby:

Diagnosed March 2017 --- Stage IV with one bone met confirmed with bone biopsy; some lymph node involvement.

April 2017 - Started Lupron

PSA dropped from 17 to 3 by May

June 2017 - Sept 2017 - Six cycles of Taxotere chemotherapy

PSA dropped to <1 by July

October 2017 - Started Zytiga

December 2017 - PSA of <.10

February 2018 - Stopped Zytiga because of liver damage

[Jdupre in reply to TNCanuck]

Hi there,

I am new to the site as I had a major breakdown l and have been for about a year now. Needed to talk with people who understand what I am going through... My Dad was diagnosed August of 2016 with stage IV prostate cancer with bone involvement and a PSA of 174. When I say bone involvement, his bones are filled- head to toe and his CT scan was a perfect silhouette of his skeleton but realized What was cancer and what wasn’t and my jaw dropped.

I am a nurse and know the reality of this disease. Reading studies seeing that only 3% of men diagnosed with what my dad has will make it to 5 years scares me more than anyone will know. I am going through the he won’t be around for my wedding, my children, and trying to grieve a loss that hasn’t happen yet but know it’s inevitable.

He has gone through the exact same treatment as you mentioned and just completed his Zytiga with a final PSA of 91. Thankfully liver numbers maintained fairly well but needed transfusions everytime he went in.

Next step is something called Radium 223. It is a radioactive injection that is new to the market. Hoping this helps but I know he will never go into remission. He is living with this now but can see it’s taking over. Not sure if anyone has any insight on this new treatment or know what the next steps would be but anything or any comments are greatly appreciated...

Thank you all and know that there is always someone to talk to.

CANCER SUCKS!!

[Chiquis]

Hi Sweet One,

I don't think your Doug is running out of options. I know every individual is unique and what works for some may not work for others. My husband had Prostatectomy and 37 radiations as well. The PSA didn't drop. On July 2017 was 8.7 and after a Axumin pet scan we found the cancer metastasize to 2 lymph nodes in pelvic area, possible 3. He started ADT with Firmagon(degarelix) Zytiga and Prednisone the psa drop to 0.1 in 2 months. He also started Chemotherapy(Texotere) base on the Chaarted trial. Six cycles of docetaxel at the beginning of ADT for metastatic prostate cancer resulted in significantly longer overall survival than that with ADT alone. Don't lose hope. My prayers for you a Doug.

Sincerely,

Erika💛

[cancervictim in reply to Chiquis]

Hello Sweet One,

Your husband is quite the trooper being on his third round of chemo. Would Zytiga or Enzalutamide be effective for him?

My husband's story began with a family doctor who stopped screening in 2012. (He said, "We don't do that test anymore.") and a late diagnosis in Sept 2018 of pT3bN1M0 Gleason 9 cancer. He is 61 and we have a son in high school.

My online name is "Cancervictim" because I feel victimized by the family doctor. Even when he finally had a PSA (28) with urinary tract symptoms, PCa cancer didn't enter this doctor's mind and we had to argue for an urgent consult. Urologist strongly suspected cancer with DRE and I realized that the family doc didn't seem to know that prostate density is an indicator of cancer.

After RP and adjuvant RT we opted to stay on Firmagon (started before surgery) and added Casodex and Zytiga. PSA and T presently undetectable but I know the clock is ticking.

My husband works full time and other than fatigue, manages pretty well.

Nice to meet other caregivers!

[erjlg3 in reply to cancervictim]

Wow cancervictim! I'm so sorry. Good wishes moving forward 🤗

[Kamilekamile in reply to erjlg3]

I am sorry too...

Good luck

Kamile

[ChuckBandChar in reply to cancervictim]

Cancer victim, I’m sorry to hear the difficulties you and your husband have had. Hopefully you can find the right doctor and treatment.

[SweetOne]

Dear CancerVictim:

I am sorry to hear of your husband's situation. Sounds like his MO has him on a good treatment plan now and that the medicines work for as long as possible. Because of Doug's liver mets the dr. did not opt to use Zytiga but he has been on Lupron for two years and Casodex until the dr. thought it wasn't responding anymore. Before this last round of chemo the dr. suggested Xtandi but the cost out of pocket was more then we could afford. My husband is 71 and on a fixed income so it was back to chemo. It is sad to watch his body and muscle mass become so diminished and weak. If this round of chemo fails, the dr. said he could look for a clinical trial (maybe one with Xtandi). My husband thinks that he has an expiration date on him and won't see the end of 2018 so it doesn't make it any easier to keep him hopeful.

I am also glad we have a site to share our experiences and hope!

[Jdupre in reply to SweetOne]

I am so sorry you’re going through this. We are somewhat in the same boat, seeing this amazingly strong man that was my gentle giant, shrivel up and consume only smoothies when he was a steak and potatoes kind of guy is heart wrenching. I hate what this has done and wonder sometimes if the chemo and treatment is even worth it. My dad won’t say it but I think he isn’t planning on seeing the end of 2018 either.

The only thing we can do is love and support them, cherish every single minute with them and let them know how much you love them. I will be thinking of you and your husband.

[erjlg3]

Welcome Erika 🤗

[Chiquis in reply to erjlg3]

Thanks erjlg3, 💛👍

[ronnie1943]

Hi, SweerOne. my name is Lynn, my husband had many bone mets nine years ago PSA was 483 had huge tumor removed from left arm, had thirty radiation treatments Did well with casodex and hormone needle, until this past year. Cancer came back with a vengeance. Tumor grew up from prostrate blocked kidney tubes, had nerostomey tubes for six months .more radaition And chemo. right after chemo PSA started doubling, now it has spread to some lymph nodes. Sam, is a strong guy, but when told this past appointment that maybe he will have to go on chemo every week for the rest of his life he said no way, well, we did not get the LN biopsy back yet, we are hoping that Sam will qualify for !Keytruda. does any ones husband on this site have any lymph node involvement.?

Just want to say there are so many new treatment and more in the making . your husband will be here for many decades. Keep us posted and know we are all here for you!! Has your husband ever taken Zytiga ,after that there is Xtandi This is usually given After chemo. This works for most me. but did not work for Sam. Take care, hugs coming your way.!

Sincerely,Lynn Pa.

[SweetOne in reply to ronnie1943]

Hi Ronnie:

Thank you for your words of encouragement. Doug had a CT and bone scan yesterday and the dr. called this morning and said the chemo is not working on his liver cancer. We are scheduled to see him on Monday. Not sure what comes next.

[ronnie1943]

Hi, I don't know why I used. the name Ronnie when I joined this site?? That's my sons name, I'm not to good with all this computer stuff! I received an iPad as a gift and at seventy four I'm trying to teach myself. My name is Lynn, I'm caring for my husband Sam. Taxotere chemo did not work for Sam either, we received his LN biopsy report finally today, Sam is going for a ct scan this coming Tuesday and right to his oncologist, dr. Ali at lankenau hospital said Sam will be put on a drug called Sunitinib or cabozntinib?? Never heard of them, it's a cancer pill clinicial trial. I'm nervous , but hopeful.!!

Keep the faith there will be something for your husband, it's trial and error. It's been nine years for Sam and many bumps in the road but there is always a new drug. Take care, hang in there and let us know what the doctor has to say on Monday.

Sincerely, Lynn

[spikezoey]

Hi SweetOne , I just joined this site and saw your post from 5 months ago. Thinking of you and Doug and hoping that you've found treatments that are working for him?