HealingWell
Search Close Search
☰

The Gleason 9 Crew -- Part 2, continued.

Support Forums
>
Prostate Cancer
✚ New Topic locked
1 2 34 5 6 7 8
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/27/2015 11:52 PM (GMT 0)
Yes, thanks Peter. I haven't been following as closely when our G9 folk arrive, partly due to distancing myself a bit from the whole thing. I'm in such a steady treatment / no drama phase that it's been a little easier to kind of back away from the whole cancer environment a bit. I don't take my currently successful status for granted, as the side effects are no fun, but I do feel good about my disease "status"!

I'll try to be more consistent about welcoming our G9s, and thanks for sharing the thread links with our new members!
Posted 7/28/2015 1:06 AM (GMT 0)
Just an update, I have just passed my 5 year anniversary since being diagnosed.

My health has been generally pretty good, I feel well and my PC seems to have stabilised and on hold. I have a few pains in my pelvis and lower back.

I enrolled in the Prevail trial of Xtandi/MDV3100 and my PSA seemed to slow down with only small increases over 2 years when the trial was stopped in November 2013 because of the fantastic results. Much to my Doctor's and myself's shock we found I was on the placebo. I then started on the real drug Feb 2014 when my PSA was 24, over the next 10 months my PSA got down to 0.2 but has since December 2014 it has slowly risen to 1.29 yesterday. I am not sure of the significance or real importance at this stage because my latest scans in May showed no increases.The scans over the last couple of years have shown that the metastized cancer had stabilised and in a few places had actually reduced in size. Not sure that this can be attributed to Xtandi or just good fortune.

But this is still a miracle,

For me the side effects of the (ADT) Zoladex are still horrific, particularily the hot flushes, memory losses and the lack of strength and stamina but overall I am still here for which I can be eternally grateful.
Posted 7/30/2015 3:42 PM (GMT 0)
Hi Beth!
Thanks for asking about us! I keep missing messages on this forum for some reason, even though I always tick the option to be notified about reply postings. So I try to check every few days and saw your last post here!

We are doing well, next big doctor visit is on Aug 4. We just did another pet scan and so we will get the results then. In meantime, Lupron HAS brought the PSA down (from 15 at diagnosis to about 0.5 after 2 months) the doc is happy and yes we found a good medonc. In fact we will be in new York in two weeks and tried to get an appointment at Sloan Kettering but they told us we are getting really good treatment in Singapore and they can't offer anything different so I guess that's a good sign? I think the good news is that my husband is pretty much symptomless, some of his blood work showed high ALT numbers but all other liver numbers are OK and his ALP has dropped so I'm hoping that's a sign of decreasing bone Mets. Praying and hoping this period where "things feel normal" lasts as long as it can.

I hope Gary is doing well and you are too...have his PSA levels come down from the treatment? Hope you're holding up well and thanks for checking in despite your busy schedule!
Posted 7/30/2015 3:46 PM (GMT 0)
@Rangertug -- that is an amazing, inspirational story. I have just shared it with my husband to encourage him. Congratulations on 5th year anniversary!
Posted 7/30/2015 5:13 PM (GMT 0)
Got my PSA results this week, 3.71, which is the lowest since Spring 2014. Zytiga is producing a steady slow decline for the PSA. Still feel good and able to work full time. But I went down and signed up for Medicare Part A since I will be 65 soon. With the cost of Zytiga and some of the other PC drugs, I want to be really careful about a Part D plan and Medigap plan when I do retire next year.
Posted 8/1/2015 3:18 PM (GMT 0)
Just checking in with the Crew,

I'm just coming up on a year and a half since being diagnosed. PSA still at <0.1. I went to see Snuffy Myers this past week for the first time. I had an excellent, eye opening visit. It illustrated how much my docs back home don't know about PCa. He changed some of the BP meds I've been on since they can interfere with the HT, gave me a list of supplements to take instructed me on some to stay away from (who knew taking a daily multi vitamin could shorten survival times). He is switching me from Casodex to Xtandi even though I am not castrate resistant - he is sighting the Prevail trial. We'll see how my insurance company handles it.

He also recommended that I start early Taxotere chemo based on the Charter Trial results - something I've been considering before I become castrate resistant. His goal is a complete remission (his definition of this is no sign of cancer) he feels I have a good shot at it based on my response to treatment so far. So I'm going for it, hope he's right.

I'd like to here from anyone who's gone this route who can give me some insight into what to expect. Sure I've read about it but always better to hear from someone who's been thru it.

Ed
Posted 10/9/2015 2:43 PM (GMT 0)
New to the G9 Crew, My Signature goes into the details - basically, had DaVinci 8/5/2015, one Lymph Node of 24 had an 'extremely small number of tiny micro cells' (Docs own words). He said he was 50/50 on whether getting that one lymph node got the C in time.

This doc at St. Elizabeth's in Boston has done 2500+ DaVinci's himself.

PSA prior was 10
8 week post op PSA is < 0.019

I go see the Doc today for follow-up and next steps.

I have not had any other therapies, may find out today that I will, or he may say come back in 3 months with another PSA.

Any thoughts on the above or other guys experiences?

Should I be as optimistic as I feel right now?

Thanks,

Ken
Posted 10/9/2015 2:55 PM (GMT 0)
Well I guess I have to add my name to this roster after my 2nd opinion from Dr Epstein. I went outside of Kaiser to get my CDU from Dr Bahn and the 2nd opinion at John Hopkins and it has taken them 3 weeks to acknowledge that I have PCa. My primary Kaiser Dr told me she didn't understand how I had cancer when I had two negative biopsies and a negative MRI. I promptly sent her the latest studies on PC missed by random biopsies and MRIs (all posted on here by others). Another reason I have decided to head to UCLA and get out of Kaiser. I just want them to at least provide me with the scans necessary to rule out/in mets. Appointments on 11/3 with Dr King. Looking forward to some professional help.
Posted 10/9/2015 5:08 PM (GMT 0)
CaliJR,

If you are seeing Dr Marks, you should ask him about the advisability of getting a bone scan for mets. At our PSA levels bone scans are considered unnecessary but do cause false positives that then have to be resolved. Dr Marks said I had "opened Pandora's box" by getting a bone scan with a PSA below 10. He was right, it took another scan at UCLA followed by 2nd and 3rd opinions over several months to get resolved as all negative. In the meantime any treatment had to be delayed because of this open issue.

Just suggesting caution before you get a scan.
Posted 10/9/2015 5:44 PM (GMT 0)
A good day for updates. I've undergone both Provenge and Xofigo since last post both seemed to have been quite successful, the Xofigo has wiped out all three of my bone mets and recent scans show no visceral mets so the Provenge must me doing its job. The most recent scans showed that my prostate has swollen rapidly over the past 6 months and is now pushing on my uretheters, not good. I've got a appt with a Uro on the 19th and will be looking into stents or possible surgery. Any of you with experience please respond . . . Q
Posted 10/9/2015 7:37 PM (GMT 0)
Quincy - that sounds good about the provenge and xofigo doing their job. I hate it that you have the swelling. By 'surgery', do you mean a prostatectomy or another surgery?
Posted 10/9/2015 9:45 PM (GMT 0)
There's no RP In my future, that would just cause the cancer fo spread they tell me. I have no idea what she meant by surgery either, I see my MO on the 16th so I'll ask then. Right now I'm just plain confused . . . Q
Posted 10/14/2015 10:07 PM (GMT 0)
HEARS ANOTHER ONE FOR YOU Redwing57 just got my Epstein re report back a few weeks back!!!NEPOL
Posted 10/14/2015 11:48 PM (GMT 0)

nepol said...
HEARS ANOTHER ONE FOR YOU Redwing57 just got my Epstein re report back a few weeks back!!!NEPOL


Well, never really glad to add anyone to this list, but here we are! I've added you to the illustrious roster.

How did the upgrade happen? The last pathology in your signature looks like it would have been from the RALP results in 2014, but that's listed as a downgrade to G7. What led to the G9 diagnosis? Did Epstein's office review the pathology? What prompted that? Lots of questions, but it is curious.
Posted 10/14/2015 11:53 PM (GMT 0)
KenHayes, optimism is always good. It's the "there's gotta be a pony in here somewhere" mindset.

My mantra has become "I'm ok until I'm not ok". So, not fretting outcomes, status, etc., minimal web searching for stats and so on. Until some number says there's a problem, there isn't a problem! Some G9s do really well with only surgery, and here's hoping you're one of them!
Posted 10/15/2015 12:07 AM (GMT 0)
CaliJR - I had a CDU done by Dr. Fred Lee here in Michigan about 13 years ago when I was 45 (PSA was 5.0). I think Dr. Bahn trained under Dr. Lee. That's an interesting biopsy, looking at the color images on the ultrasound. That was the 3rd biopsy back then, and settled the question for me at the time.

For me so long ago, all we found was inflammation so that was a huge relief. In fact, as the PSA numbers declined over time to under 2 for a couple of years, I put PCa out of my mind. Too much so, perhaps, as I stopped monitoring PSA annually for about 4 years at age 50, since I thought I'd just check it again at 55 and then annually. Well, that physical at 55 had quite an unexpected result with a 4.1 PSA, and 5.2 just 6 months later. That biopsy showed my G9, re-evaluated as 5+4 by Dr. Epstein. Shocked, to say the least.

Anyway, the good news for you in my humble opinion, you have a small hard-to-find case, so you may have some good options for treatments. Surgery could be an option if it's really well contained. Mine wasn't, so RT was a better choice for me. But the ADT/RT combo is a long rough road, and I am a little envious of the guys with surgery that have decent recovery in a matter of weeks.

Here's to persistence! Good luck in your treatment decisions. This forum is a really good place to ask questions, as you've likely already found out. All the best!
Posted 10/15/2015 1:04 AM (GMT 0)
Thanks Redwing... So far I have learned a lot from many posters on here. I have 4 dr appts in the next few weeks so I hope to figure things out for treatment by early November. Take care.
Posted 10/15/2015 5:24 PM (GMT 0)
good morning all Redwing.. sent slides to the big E for 2nd opinion .. got surgeons report V.A. S.F. tert.5 E says tert.% makes my 3 a 5!!! NEPOL
Posted 10/15/2015 10:56 PM (GMT 0)
nepol, I've heard that any amount of Type 5 cells is a risk factor, and have heard of tertiary 5 upgrading the overall Gleason or at least as an equivalent risk. Sorry to hear that, of course. The issue I guess is just that this type of cell exists at all, and not so much the amount of it.
Posted 10/18/2015 10:28 PM (GMT 0)
GOOD Sunday to all ...Redwing 57 thanks for come back ..the big E says 5% and up score at margin 4+3 hope it didn't get out time will tell.. he didn't tell me what the % was guess i should have asked was still in shock!!! NEPOL
Posted 10/27/2015 9:59 AM (GMT 0)
Hi everyone,
We just went for our 3monthly checkup and in the past 3 months since 28 July, the PSA has gone from 0.46 to 0.4. This is a pretty measley drop and the doctor did not seem particularly positive esp since we are barely 6 months post diagnosis and response seems to be tailing off.

On the bright side, my husband is fine and has really minimal side effects. Also his liver enzyme numbers are all back to normal which the doc said was a good sign that the bone Mets might be retreating.

Should we be very concerned about the diminishing drop in PSA, or is any drop a good sign even if rate of change is slowing? How long did it take those of you on adt to reach a psa nadir? Would love to hear from the collective wisdom on your experiences!
Posted 10/27/2015 3:42 PM (GMT 0)

After the prostatectomy and radiation, within 2-3 months my PSA dropped to 0 for two years on Lupron, then started rising. But my PSA never got higher than ~6.4 or close to that, pre surgery.  I say lower is better but I know you want to see a zero.  It's good that the mets seem to be 'retreating'.

Posted 10/29/2015 12:30 PM (GMT 0)
Thanks Faustmann. Doctor is recommending that if there's a rise we should go straight on chemo, but I'm wondering if zytiga or sbrt might be better interim options... In parallel just hope it keeps dropping slowly but surely... Fingers crossed
Posted 10/29/2015 8:05 PM (GMT 0)
I believe the latest thinking is that chemo sooner is better. Early chemo plus ADT seems to have added benefit opposed to using chemo as a late treatment. I hope someone with more knowledge about this will chime in.
Posted 11/16/2015 2:23 AM (GMT 0)
Count me in. First post-op PSA tomorrow.
✚ New Topic locked
12345678