First Good News in Awhile!

[Here4Dad]

Hello All,

It has been quite the journey since my Dad's diagnosis. We have been in and out of the hospital due to secondary infections caused by urinary tract infections from his catheter and nephrostomy tubes. We changed from external nephrostomy tubes to indwelling JJ stents on both kidneys. Dad is super adamant about removing catheter ASAP so he removed it to see if he could pee on his own but was unable to and caused a urinary tract infection, which in turn caused a secondary infection that landed him in the ER and then hospital for another extended stay in less than 30 days.

NOW ON TO THE GOOD NEWS:

This morning the oncologist stopped by and relayed that my Dad's last PSA reading was a 6!!!! It originally was 480 with Gleason score of 9. From 480 it went down to 200ish with just Bicalutamide/Lupron treatment and now after first chemo treatment is at a 6! I hope means he is responding to treatment very well.

As this is our first experience with any type of treatment, I want to know if this is truly an indicator that treatment is going well or if there are other things I should look for as well?

Thank you guys in advance! I'm writing this from the couch bed in my Dad's hospital room. He is a fighter!!

[Here4Dad]

Yay! Thank you. I am truly ecstatic for the progress. I have not heard of Neulasta but will add to my arsenal of tools if needed.

Congrats on your PSA as well 😊😊😊

[j-o-h-n]

Good news... I guess your Dad knows now that UTI's are not to be taken lightly. He couldn't wait to be pee hmmm. The saying goes "patience is a virtue, have it if you can, always in a woman, seldom in a man".

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/30/2018 5:54 PM EDT

[Here4Dad in reply to j-o-h-n]

You are telling me!! I tried to explain that he hadn't been on either ADT or chemo long enough for it to shrink down the prostate or lymph nodes on his ureters, but he wouldn't listen. Tsk tsk.

A lot of this journey has been me advising my Dad of advice in his best interest and watching him disregard said advice only for the outcome to be hospitalization. It's frustrating but we are learning together. Our whole family is.

If anything this experience has taught us to respect each other's communication styles and individuality.

[j-o-h-n in reply to Here4Dad]

"taught us to respect each other's communication styles and individuality".

Family = Familiar (well known from long or close association).

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/30/2018 7:03 PM EDT

[Schwah]

Great start. Ask your MO about adding Zytega to the lupron soon. Shown to have great results. I’d also add the neulasta shots as preventative care. Low blood counts can lead to serious infections. I go one shot every chemo infusion. Best of luck. He’s lucky to have you.

Schwah

[Here4Dad in reply to Schwah]

Initially Dad wanted to do Zytiga before chemo but he is self pay so Zytiga was unaffordable until he is on a long term insurance plan. That will be our next course of action!

[Schwah in reply to Here4Dad]

Google “Zytega generic”. They just lost a court case on their patent so hopefully a much less expensive generic will be available soon.

Schwah

[charlesmeyers1964]

if he has a Gleason score after being dx then he has done nothing on his prostrate gland iam i right? that's not right to do u or dad won't get better. not sure who told u to not fight it when dx such as surgery,radiation,isotopoids or what ever. i've been fighing pc for 10 years and since hes not cured by now he will die from it and your/his choice is to keep the psa in single 2 digits.

[Here4Dad in reply to charlesmeyers1964]

Those were questions I brought up to the oncologist to understand why chemo first. Chemo was a recommendation because of how severe the cancer was at time of diagnosis. It had already shut down his urinary tract system and traveled to his bones. Chemo was the most affordable aggressive form of treatment to stop the spread of the cancer and shrink the organs enlarged due to prostate cancer.

It is my understanding, when caught early prostate cancer can be treated with a variety of methods. However, if caught later when the prostate cancer has metastasized to distant organs or bones, a more aggressive approach is needed. As a result, we chose ADT and chemo as a first line of defense.

[Nicnatno]

Great response. Very similar to mine. My PSA was 415 at dx. After 1 week of bicalutamide, it came down to 210. After 1 round of chemo, it went down to 8. Did 6 rounds and it's been holding steady at 0.1-0.2.

Nick- dx March 2017

[Here4Dad in reply to Nicnatno]

Love to hear this encouraging news! Congrats on your progress and lowered PSA!

[joancarles]

Great news. this is working very well. I have not had chemo, dse moment, but I have also responded well with Zytiga.

[Here4Dad in reply to joancarles]

That will be our next course of action. I have heard great things about Zytiga!!

[joancarles in reply to Here4Dad]

Yes, the truth is that it is working well. I started on this path with 51 years and a PSA of 1350 on 07/17. We have managed to lower it to 0.17. At this time I have had a slight increase to 0.26. let's hope everything works. Side effects, in my case, are very few. The typical hot flashes, `but less and less. Very little fatigue. And non-existent pain.

[TNCanuck]

Great news on the PSA!! Prayers for continued good response.

[Here4Dad in reply to TNCanuck]

Thanks 😊😊

[Lynsi13]

Wow! Your dad‘s story is very similar to my dad’s! He was diagnosed in 2015 with a PSA have 257. His had metastasize to a single lymph node however his prostate was so in large that it caused his kidneys to shut down and he also had to have double nephrostomy tube‘s. His were in for two months while he underwent chemo. He also had the Neulasta shot. One word of caution about the shot, while it does help the white blood cells, it does cause a lot of bone pain. Oddly enough we were advised to take Claritin along with the Neulasta. That along with pain pills seem to help keep the pain under control. So if you do end up getting the shot, be prepared for the pain and ask about Claritin as well! Also, just so you know, the regimen worked very well for my dad. He completed his chemo in November 2015 and has remained on hormone therapy ever since. His PSA has remained low and he is doing great today! Hang in there! It’s a long tough road but there is hope!

[Here4Dad in reply to Lynsi13]

Thank you so much for the well wishes and advice!! Out of all things related to this cancer, my Dad has struggled the most with having a catheter. I hope he can get it out once chemo is complete. I definitely will check into Neulasta as his UTIs are so frequent and increasingly worse now that he is immunocompromised. Thank you again and so happy to hear your Dad is doing great!

[Hidden in reply to Lynsi13]

I also had the tubes in 2015. What a year to forget.. Glad that we both made it thru those dicey times. Take care.

[Lynsi13 in reply to Hidden]

Oh wow!! Not too many men share that awful experience. Glad it’s behind you and my dad!! How are you doing these days?

[Here4Dad in reply to Lynsi13]

Hey guys,

How long did it take you Lulu700 and your Dad Lynsi13, to remove the catheter and when did you know it was the right time? Is it only by trial and error of removing catheter and checking urine output?

[Hidden in reply to Here4Dad]

I started self cathing six weeks until pc tumors blocked urethra . Over one year with foley and tubes.. That period I also did Rt and double adt ..If you’re talking about the foley . I was scared to finally remove the foley.. but treatments worked and all tubes out .. hopeful never to return .I believe it is unique to him as to when to remove.. ASAP.

[Hidden in reply to Lynsi13]

Yes , we are the lucky ones to escape that hell. I’ve been clear of all signs of PC and PSA for over three yrs .. It’s a weight we carry even with no signs we know PC can hide for years if we’re so lucky.. I’m not sure how many guys end up with the blasted tubes , but not many I assume. Glad he’s better . Nice to hear from you . Peaceful holidays to your family..

[Stegosaurus37]

I can certainly empathize with your Dad's dislike of the catheter. I had one for 160 days before a TURP finally cured the urination problem.

But I have an optimistic nature and saw the bright side of the catheter as being a great time to get into a beer drinking contest.

The monthly change of the catheter was the worst part. The first time they did it you could have heard my scream in Portland. It was better after that first time but still painful. Lidocaine is helpful for pain at the insertion point in the penis and I always taped the catheter/tube and tube/collection bag junction points. Could get embarrassing if they came loose for any reason.

Sounds like chemo is working; I know it can be difficult to be patient sometimes, but keep fighting! All your Dad's brothers here are with him and you totally.

[Here4Dad in reply to Stegosaurus37]

Yes, the catheter is certainly awful. I am trying desperately to encourage him to have a better attitude towards it but he hates that damned thing! Thanks for sharing your own experience. Lidocaine helps for insertion. Now if we could just avoid the frequent UTIs!

[Karenprin]

Good News that the PSA has gone down, Thats always a good sign and responding to treatment. Keep fighting this horrid disease. lots of hugs xxx

[Here4Dad in reply to Karenprin]

Thank you and same to you! We are all in this fight together.

[Hidden]

Hello Here4Dad, I hope you and Dad are both well...