The Gleason 9 Crew -- Part 2, continued.

Carolyn,
We got down to only one rescue cat and he's a dear but old guy. My wife got me a 3 month old kitten (rescued from the pound) that has brought so much laughter and love into our house. This little thing, she's six months now, has shown me how withdrawn I had become fighting this cancer for 7.5 years. I hadn't laughed this hard and deep for so long. I'm a dog lover too but we can't have them here, just to let you know that I'm not a cat chauvinist.

Also, does your husband have a harder time of it when he is on the Casodex as well as Lupron? I see that he has mets, the Lupron and Casodex sure shrunk my bony mets at the start of treatment and no new ones have shown up in all these years. Best of luck . . . Q

Fatigue is the first SE to show up and I still have it. Just take one day at a time . . . Q

For the record on this G9 thread, I'm posting my recent experience with a Grade 2 urinary complication from radiation therapy. We can help one another by posting here when we have something of interest to our little community.

With 2 instances of visible blood in urine a week apart, I went to a urologist for a workup. We did urinalysis confirming microscopic blood still there (no longer visible), a CT scan to evaluate the whole urinary system, and a cystoscopy to look right up the urinary tract into the bladder. That procedure wasn't bad, but the after effects were quite uncomfortable. I stayed home from work the rest of the day.

Good news, no issues were found! Very Bad Things that it could have been weren't there. Not even visible radiation cystitis. Nothing. So, it's likely my 79.2 Gy of IGRT simply weakened some capillary somewhere that decided to seep a bit. We didn't find anything.

So, for those considering the side effect of radiation therapy, even though I did have a fairly uncommon issue it has turned out to not be significant. As always, your mileage may vary

Jerry

Just an update as I haven't posted on this thread in awhile and I haven't figured out how to increase my signature line.....some of you have a mile long sig line and I get cut off for some reason.....so every time I change or add something I have to delete another.

I started out on ADT 2/IMRT 45 days of it and was good (below 1 PSA) for 18 months. At that time I was getting my PSA done every 3 months....PSA went to a 1.9 and at that time the Dr. wanted me to wait another month because he wanted to see another raise since it could have been a radiation bounce.....I waited another 30 days and it came in at 228. It was then I did another set of full scans and found I had widespread bone mets....my spine, neck, skull, shoulders, pelvis, ribcage all lit up like a Christmas tree.

At that time I continued with HT and started Zytiga/prednisone.....which brought my PSA to .4 and stayed there for a year.....New bone scans showed scarring over of old lesions and no new growth....pain still stayed the same though.

In the meantime while on Zytiga,,,I finished a full round of Xofigo(radium 223) and that helped with the pain...I also had 10 days of radiation to the spine.

After 1 year of good results of Zytiga/Xofigo and ADT2....I switched to Xtandi and ADT...which seemed to stall my PSA at 20 for 3 months....I also started a clinical trial of a new round of radium 223 which Friday I get my 9th total infusion. My PSA has since went from a 20 to a 28 and get it checked monthly. Just yesterday It came in at 55 so it appears I got just 3 months of use from the Xtandi. It looks like my next treatment will be taxotere...chemo.

Also will continue the ADT, Xgeva and pain meds. Not sure why I still have pain as my last bone scan 2 weeks ago showed much improved results.....but have a suspicious lymph node and several small spots showed up in the chest area....

If I had to do it all over again....I would have pushed for Provenge early on before Mets....because since I had bone mets....Ive been on pain meds ever since and don't qualify for it. I believe I may have damaged a nerve or something with the bone mets which is why I have continued bone pain....mainly at night while sleeping or laying down.....chris

Tonka, at this point pre-treatment PSA numbers are really just a yardstick by which to measure the success of treatment. You will feel much better as you see those numbers drop! They will,come down. The trick is to find out where the PSA producing cells are and go after them which HT and chemo will do, they are systemic treatments and will affect all the Cancer throughout the body. Hang in there!

Cheers, Doug

Didn't see 'us' listed- but may have missed it in the OH, SO LONG list. Hubby has been fighting the battle for over 2 years now. He had Da Vinci surgery and is now on Lupron 4 times a year. He currently in the Zero Club 9 (YAY!!! ). But the most recent shot (Dec. 2014) hit him hard. The joint pain was considerable, and he's had a flare in his right big toe that may be gout, may be a reaction. He's also had headaches. Finally seeing some of it ease off. He still deals with the fatigue. But life is good so far.....

Not much action on this thread lately so I thought I'd give it a "good" bump. My Mar. PSA <0.02. 1st post Orchie.

Cheers, Doug

Headed the right direction Faust! They've mentioned Casodex for me next. We'll see.

Cheers, Doug

I meant "3" month Lupron shot not "2"month. Also, he said if after awhile my PSA starts to rise, he would recommend Chemo and HT.

Hi all,
i'm new to this thread and HW forum but posting on behalf of my husband who just got a diagnosis of G9. This came as a real shock to us because he had a large, obviously weird nodule that was covering half his prostate that was targeted by a biopsy not 3 months prior and that came out negative. 3 months later in a second biopsy, we are suddenly getting a diagnosis of G9 + boney mets + nodules in lungs.

I've listed our journey below and just wanted to say this forum has been so helpful and encouraging in knowing that there are other people going through the same thing.

==============
Chronology:
Apr 2014 - Normal PSA of 3.67 (prior to this went for annual medical screenings and all normal)
Nov 2014 - felt achey on and off pain in pelvic bone, told by doctors it was a posture issue.
8 Jan 2015 - went for annual medical exam, doctor did a DRE and felt a hard nodule covering half of the prostate so went for further checks
9 Jan 2015 - PSA test showed 8.2, evidence of some bacterial infection in urine samples, treated with a few weeks of antibiotics (Augmentin)
2 Feb 2015 - went for 1st biopsy - 10 cores, with most shot directly into the nodule that covers half of the prostate --> Result = Negative with HGPin
2 Feb to 7 May 2015 - treated with more antibiotics because of negative biopsy and assumption that it was an infection.
7 May 2015 - PSA rose to 15.68
7 May to 21 May 2015: went for 2nd biopsy (7 cores) followed by MRI, followed by Bone-scan followed by Choline-PET Scan.

Results: Stage 4 Prostate Cancer with Gleason 9
Biopsy: Positive for Cancer, Gleason (4+5) = 9. All 4 cores shot into the nodule in prostate were positive for cancer, and 1 nodule on the other side of the prostate also positive.
MRI: Pelvic Node involement
Bone-scan: Suspicious of bone metastasis
Choline-Pet Scan: Bone Metastasis confirmed + metastasis to nodules in lungs as well

Treatment so far: Started with one jab of Lucrin/Lupron on 19 May after getting the prostate biopsy results - doctors asking us to wait and see if that works before trying anything else.

Thanks so much Beth for the words of support and i hope that Gary is doing well too. We decided to take ourselves off to a beach holiday in Thailand to take our minds off the stress of the diagnosis so i write this now from the beach (amazing how environment makes such a difference in mindset!)

We had a bit of a small 'win'-- some ongoing pain in the pelvis that my husband had been experiencing (and that the doctors thought was part of the bony mets and suggested radiation for) turned out to be completely fixable by a physiotherapist and traceable to an injury that he had some years before. So at least, no more pain!

We are now in process of picking an oncologist as we've heard that is the most important doctor for us at our stage. We have applied to send our tissue samples to a company called Foundation One for gene sequencing, as our doctor has told us that that might give us a shot at qualifying for an Olaparib trial (if it is found that my husband has BRCA1/2 mutation -- which we suspect he might have because he has a history of breast cancer in the family...) Have you or anyone else on this thread tried this?

Aside from that, we wait until our next big doctor's appointment in beginning of July where we see if the Lupron works. Fingers crossed!

We can add new member Whentheworldstops' husband to our list. You might drop by her thread and say hello.

Wondering how Angsty is doing? Did the Lupton lower the psa? Did you find a medonc? What happened with the gene sequencing? Hope the visit to Thialand rejuvenated your spirits.