Why "monitoring?"

New Topic Post Reply Printable Version
41 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

LisaInIndiana
Regular Member


Date Joined Jan 2018
Total Posts : 22
   Posted 1/2/2018 12:17 PM (GMT -7)   
I'm new to this forum. I'm here for my dad. My dad got dx in 2011 with PSA of 16, gleason 7 (Not sure which way). He had radiation but then his cancer came back maybe 2 years later. They had tried him on HT and it always worked for a while but then stopped. He also takes Casodex shots. Bone scans always ok but PSA rose slightly. He was on Zytiga and Prednisone last and that stopped working after about 8 months, PSA rose to about 3. She put him on Estamustine maybe 3-4 months ago and it doesn't appear to be helping or if it is, it sure isn't much since his PSA is over 5 now. At the end of November she said she wanted to get a bone scan this month (Jan 4) and in the meantime she is "monitoring." Monitoring? Why monitor when my dad could be having tumors grow to his bones? I am so nervous about him going to get a bone scan. I heard once it gets to your bones you really don't have that great of a prognosis or a lot of time.

If someone gets it in their bones are there ant drugs to prolong survival?
Any replies would be appreciated. Thanks!

Post Edited (LisaInIndiana) : 1/2/2018 12:20:12 PM (GMT-7)


Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 9125
   Posted 1/2/2018 3:19 PM (GMT -7)   
Lisa-

His PSA is still very low, so whatever hormone therapies he's been taking have worked pretty well. Sometimes withdrawing Casodex reduces PSA because the androgen receptors have learned to feed on it. Xtandi usually doesn't work for very long after Zytiga as failed, but may be worth a try.

Because he is castration-resistant without being detectably metastatic, that limits the medicines that might work for him, or that insurance will approve. Xofigo and docetaxel work best when there are multiple bone mets.

There is a clinical trial that he may be uniquely qualified for, if his PSADT is rapid enough:

/clinicaltrials.gov/ct2/show/NCT00859781

They have an site at Indiana University Melvin and Bren Simon Cancer Center
Indianapolis, Indiana, United States, 46202
Contact: Rhoda Loman rloman@iupui.edu
Principal Investigator: Constance Albany, M.D.

Lu177-PSMA is one of a new class of radiological agents that attach to and kill prostate cancer cells anywhere in the body. I hope he can get into this trial.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

Gemlin
Veteran Member


Date Joined Jul 2015
Total Posts : 625
   Posted 1/2/2018 3:51 PM (GMT -7)   
Lutetium-177 PSMA treatment, is available outside US, for example in many Germany university hospitals. You have to pay for it yourself. The cost is 10,000€ to 15,000€ per treatment.
Age at detection: 60
PSA 4.1 2014-02-25
Biopsy 2014-04-24, 4 of 10 cores positive, G: 3+4,4+3,4+3 EPE,4+3. PNI+
Bone scan negative
DaVinci 2014-08-31, nerve sparing right side
Prostate 35 g, 46x37x38 mm
Tumor dorsal PZ, SV-, 14 LN-, SM-, pT3a, G7 (4+3), EPE+ left side
PSA:
2014-10 <0.05
2015-03 <0.05
2015-09 <0.05
2016-03 <0.05
2016-09 <0.05
2017-09 <0.1

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6792
   Posted 1/2/2018 4:01 PM (GMT -7)   
Lisa,

Welcome to Healing Well.

Tall Allen has provided a lot of valuable detail for you.

I have mets in my ribs and spine that appear as "suspect" spots, vanish, and reappear over time, as they are impacted by the meds. I've gone through Lupron, Casodex, Zytiga, Xtandi, and am now on Taxotere every other week.

The "problem" with "monitoring"? There isn't one in cases of low PSA. Bone scans (I have had more than I can remember) only show larger spots that normally appear only with much higher PSA values. My scans have not been unpleasant or unmanageable in the least. I know the staff by first name now.

If your oncologist is really watching the meds and test results, "monitoring" may be the best path for now.
NOTE _ MY EMAIL HAS CHANGED!
Moderator - Prostate Cancer
(Not a medical professional)
DaVinci 10/09
IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 9/12-3/13, 6/14 to present
Prolia 6-mo inj 12/12 to present
Casodex started 12/14, end 3/15 after psa 30% rise
Zytiga 04-07/15 Xtandi 04/16-8/17
Taxotere 10/17-?

LisaInIndiana
Regular Member


Date Joined Jan 2018
Total Posts : 22
   Posted 1/2/2018 4:40 PM (GMT -7)   
Thank you for all the replies. To TallAllan, do you mean that there are no other ways to really stop my dad's PSA from rising now except for what you mentioned? That sounds disheartening.

I know my dad doesn't like going for the scans. It's not the scans themselves that scare me but the results. The doctor he goes to is said to be a very good doctor, but she's straight forward and does not ease my fears in the slightest. I guess she doesn't understand that people worry about cancer. She's just there to do the job and told me once, "I will take care of your dad."

I read that the median time to first bone mets after CRPC dx is around 36 months or something like that? So that is scary in itself. I had been hoping for a longer time since his PSA is 5. I was under the impression that a higher PSA would be when the mets would show up but don't know that it's necessarily the case? (see below)

I asked the doctor what happens then and she said he would have to come in for IV's. That didn't answer a whole lot. I'd like to know how long he'd have left but she just tells me, "I'm not God, I can't tell you!" Well I know she's not God but she's a doctor and she knows about prostate cancer.

142 how long have you had bone mets? I didn't think bone mets would show on a scan with a lower PSA but there are other people on this board and around the web who have had a much lower PSA and have it in their bones. What is your outlook on having bone mets? How long can medicines help for that? Do they prolong life or just control pain?

halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3169
   Posted 1/3/2018 4:33 AM (GMT -7)   
Lisa,

How old is your father? How long ago was he originally diagnosed and treated?

It's true that bone mets, once they appear, cannot be cured--but that isn't the same as a death sentence. There are many men out there--and quite a few in this forum, who have been managing bone mets for long periods of time.

Also, as others have said, before they can be detected on a bone scan, they have to reach a certain size, and so monitoring is the whole point of the scan. What (if anything) can we see today--and later on, we do another one, and compare them. If you can't see them, you can't treat them.

LisaInIndiana
Regular Member


Date Joined Jan 2018
Total Posts : 22
   Posted 1/3/2018 7:46 AM (GMT -7)   
halbert, my dad is 69. He got diagnosed in 2011. At that time, they didn't think it had grown outside the prostate.

Can the treatments keep the bone mets under control or just get rid of the pain? How long do the treatments work? Seems like no treatment lasts long. From what I read on all these sites, it says that almost half the people with bone mets die within a year, and after five years only 3% are still alive. That scares me but I have read on here how some people have been dealing with it for many years like you said. There was a site I was on where a guy had it in his bones in 1996, when he previously had a PSA test a month or two before and it was normal. That was 1996 and he didn't pass away until 2014.

I guess I am just wondering what's going to happen if my dad has it in his bones and just how bad the next phase is going to be. It seems to me that he progressed quickly through the disease but compared to the person mentioned above, very slow.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6792
   Posted 1/3/2018 10:56 AM (GMT -7)   
Lisa,

It seems to me that you are looking for absolute and definitive answers in an arena where there are few of those, if any.

As to bone mets, they can range from spots that are hard to differentiate from arthritis / past bone damage to clearly and painfully obvious.

Mine are in that first group. The way they determined that they were early mets was to compare to past scans, past medical history, and reports from my orthopedic doc. Can anything rid him of mets? Probably not, but I have seen that mine are sometimes driven to a level that they can not be seen, then a year later be evident, then vanish months later.

I don't have all the reports at hand, but they first identified suspicious areas in my second scan, about Sept / Oct 2010. Actually the arthritis has been the problem that causes me pain and mobility issues.

CuriousCharles
Regular Member


Date Joined May 2017
Total Posts : 194
   Posted 1/3/2018 6:11 PM (GMT -7)   
Lisa,

You fearfully mentioned, "From what I read on all these sites, it says that almost half the people with bone mets die within a year, and after five years only 3% are still alive."

I can attest that that statement is NOT the experience of many Individual men with prostate cancer that has spread to bones.

I was diagnosed very late, without any earlier detection or treatments, with mets to MANY bones and lymph nodes in Nov 2013 at age 65 with a PSA of 5,006, and a bone scan that lighted up like a Christmas Tree. Over 4 years later, I am still alive at age 69, mobile, and free of pain from any of my bone mets.

Some of my treatment details are in my signature info below.

I encourage you to keep posting, and to talk about your fears. It will help.

But, also try to keep your life and mind in the present moment, and directed more toward making and enjoying good experiences with your Dad whom you love so much.

Ruminating about the past, or stressing about a future which does not yet exist, can all too often fill us with negative thoughts and anxieties. The only life we can really feel and live is the one that's right here, now.

Charles
Dx Nov 2013 Metastatic Prostate Cancer at Age 65
Numerous Bone Mets and Lymph Nodes, PSA 5,006
ADT Lupron + Zometa, PSA Nadir 1.0
Resistance after two years.
Short rechallenge Casodex.
Oct 2016 Provenge
Dec 2016 Start Xtandi, PSA 95
Sep 2017 Xtandi PSA Nadir 1.2
Nov 2017 PSA 1.7

Post Edited (CuriousCharles) : 1/3/2018 6:14:02 PM (GMT-7)


Wings of Eagles
Veteran Member


Date Joined May 2013
Total Posts : 647
   Posted 1/4/2018 9:24 AM (GMT -7)   
Lisa,
It is great that you are taking on this journey with your Dad, who you obviously love very much. Trying to find out everything you can is admirable, but often frustrating. You found a great forum here stay with us. I would just advise listen to those that just posted, Charles gave you excellent advice, Tall Allen is one of our fountains of knowledge, lean on us.

Add me to the growing list of those longer lasting-dx with PSA 72 and four sizable bone mets(2012) that probably started years before that. Today with treatment I have no pain, and PSA activity is inactive or I like to say in remission,hopefully a lasting durable one, before any more advancement. DO NOT pay attention to any statistics that you read, your dad is an individual that will crate his own pathway.

Hopefully that Dr is one you can trust, and works in a team to evaluate your Dad regularly and can take the time to explain in detail upcoming treatments. Your dad might want to seek second opinions for advanced cases is the answers are not explained thoroughly or in brief or even dismissively.

So my other advice is to take a breathe, slow down and even though your Dad was Dx way back in 2011(that's longer than mine) take the time to read a classic post on this forum entitled "Letters to the newly Diagnosed." You can find that one just by typing that phrase into the the search box that pops up when you hit "search" located on that blue stripe above.

Take care, keep the faith,
Wings aka Dan in So Cal

.
DX PCa-Nov/2012,age 57=GS 3+4=7 & 4+3=7 w/mets PSA=71.2 start Lupron PSA=,

1/13=2.7 2/13=0.7 3/13=0.2 6 /13=0.1
9/ 13=0.7 11/13=1.4 12/13=2.7 4/14=2.7
6/14=3.8 8/14=5.2 1
Zytiga:
9/14=1.4 11/14=<0.06 12/14=<0.06 1/15=<0.06 3/15=<0.06 6/15=<0.06
9/15=<0.06 12/15=<0.06 3/16=<0.06 6/16=<0.06 9/16=<0.06 12/16=<0.06
3/17=<0.06 8/17=<0.06 12/17=<0.06

Post Edited (Wings of Eagles) : 1/4/2018 9:54:05 AM (GMT-7)


Kathy77
Regular Member


Date Joined Mar 2015
Total Posts : 64
   Posted 1/4/2018 3:41 PM (GMT -7)   
Hi Lisa, not sure I can add anything to the excellent advice you’ve been given above. I just felt the need to reply to your post as you remind me of myself. My Dad is a Gleason 9, psa 70+ spots evident in the lumbar region. Now... you may be thinking this is sounding pretty miserable and yes, just recently he’s had a bad time... However... ‘spots’ were noticed over 2.5 years ago and from then until a few weeks ago he has been very well. Even after a really worrying Christmas he’s starting to pick up again and starts a new drug next week.

The best advice I’ve been given here is to take each day as it comes... it’s so very hard and like you I want answers but unfortunately nobody can give us a definitive answer. Like you I have googled how long a person lives once bone mets are evident...And quite honestly after reading up things tend to look pretty bleak, however after much reading I believe these statistics are not necessarily up to date. Everybody is different and will respond differently to treatment. What didn’t work for one person may work really well for your Dad. There are many men on here, some of whom have responded to this thread, with ‘aggressive’ pca and who are doing well. So try not to lose faith, the consultants dealing with your Dad’s case will be doing all they can.

I understand everything you’re going through right now, and the guys here know far more than me as they are the ones having to suffer this wretched disease... but don’t lose hope... I lost mine recently but it’s coming back... there are many options. Much love x

LisaInIndiana
Regular Member


Date Joined Jan 2018
Total Posts : 22
   Posted 1/4/2018 8:47 PM (GMT -7)   
For some reason I have not gotten any e-mails since yesterday telling me I had replies to my post, so I came here and saw all these replies! Thank you everyone!

Gee where do I start? I guess with 142.

Yes, part of me wants definitive answers but the logical part of me knows that's not realistic. I'm just scared and concerned.
They told my dad last time he got his scan that he had lots of arthritis in his scans. Now that you mention it, maybe they are taking this scan to compare with his last scan he got 3-4 months ago. Every time he goes for a PSA test or scan it's more of the same fear.
Why do your mets sometimes disappear and then reappear? Is that from different medications you take? My dad has taken his ADT therapy and has recently failed Zytiga after about 8 months, now Estramustine didn't work, or is not working well.

Curious Charles, that is very reassuring again that someone says the statistics are not right. I wish I had never read that. It relieves me more than I can say. That is a very high PSA number. Have any of your bone mets shrank? I saw that you took Provenge. I have read good things about the drug. What I don't understand is how all these drugs say how they can extend life by (for example) 2 months. 2 months compared to what? You took the Provenge in 2016 and many months have passed so I don't see what they mean by that. And how do they know how long a person would have lived if he didn't take the drug in the first place? My dad took Zytiga and I heard it is cross-resistant with Xtandi so I don't know if he could take that one.

Wings of Eagles, how is your PSA inactive, especially with the bone mets? I have read once you get mets the PSA level isn't as important anymore. Is that true? Yes this whole thing is very frustrating, to the point of panic. My mom told me to stay the hell off those sites that talk about statistics and everything else they say because it is driving me crazy! So I am trying to do that and I thought coming here would be the best place to be since people here all have individual stories. I'm a worrier by nature and so I made up this list that I carry around with me called "Reasons not to worry." When I start worrying, I take out the list and start reading it. It actually does help, I couldn't believe how effective it was.
I'm going to see if I can find that post about being newly diagnosed and take a good look at it.

Kathy, how old is your dad? If you don't mind me asking, what kind of bad time did he have? Did your dad get diagnosed at this stage or was it at the earlier stages and it progressed? I have been on the rollercoaster ride since 2011 every time he had to go for PSA/scans, watched him progress through ADT, now fail some of those drugs. Have your dad's mets reduced in size? Sometimes I just feel like it's hopeless, like we'll go in the doctor's office and she will tell him that she's out of drugs she can give him because this one didn't work or that one didn't work, etc. If your dad got diagnosed over 2.5 years ago, according to all those statistics, he probably shouldn't even be around but he is! I hate how those sites all are gloom and doom and they really had me believing them until I came here and talked to real people. I saw one that talked about how death comes pretty quickly after it gets to your bones. How can they say that when there are people out there living for years? I'm sure that some do die, but hopefully that is not the norm, and many could have died because of other reasons since most the people with PC are older.

I want to try to take each day as it comes. What can I do about his cancer anyway? That is something I had to really sit down and make myself understand. I want to be able to help him but I am not in control of what happens. All I can do is support him and pray for him. I'm not God and I'm not the doctor.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6792
   Posted 1/5/2018 12:45 AM (GMT -7)   
Lisa,

Yes, the mets are impacted by the meds. As meds begin to fail, I can expect spots to show up again. New med, good PSA result? I can expect the spots to become less evident.

Kathy77
Regular Member


Date Joined Mar 2015
Total Posts : 64
   Posted 1/5/2018 8:52 AM (GMT -7)   
Hi smile My Dad is 78, his cancer was diagnosed at the advanced stage, he remained pretty stable for around 2 years, in the past few months his psa rose and a new scan was ordered in which new 'spots' were found... Basically throughout the spine. They were apparently visible on diagnosis but we weren't informed!

He starts Zytiga next week and we are hoping the mets will reduce in size. From what I have read this seems quite possible. So there definitely is hope for your Dad. When I mentioned a 'bad time'... Dad had just undergone a one off session of radiotherapy. He was warned of side effects... he declined rapidly and it frightened the living daylights out of me. He wasn't eating, sleeping, was aching.. it was a massive shock as he's never appeared 'sick' before. Please don't let that frighten you... My initial thoughts were for the worst ... After a round of steroids he's a lot, lot better. I'm no doctor but his decline could have been a number of many things. The important thing is... He's much better than he was. Like you, I thought it was all downhill from that point... That hasn't been the case. I'm now aware there will be ups and downs... It's just a matter of finding the right combination of meds to help your Dad feel comfortable and ensure he keeps as well as he can for as long as possible.


You're right, we can support and pray for all those who are going through this. As long as we do that ... Well... I think we are doing ok. Will keep your father in my prayers X

LisaInIndiana
Regular Member


Date Joined Jan 2018
Total Posts : 22
   Posted 1/5/2018 10:10 AM (GMT -7)   
142, you mentioned that the meds begin to fail, is it sort of like the ADT therapies and Zytiga, etc. where eventually they will fail? Maybe it is just my perception but it just seems to me that my dad progressed through the ADT therapies quickly. How many drugs are available for bone bets? Are these types of drugs stronger drugs than Zytiga, Estramustine, Casodex, etc? If my dad progressed quickly through those other drugs is it likely it will be the same with these or is that something that is up in the air?

Kathy, which medication is your dad taking right now? My dad took Zytiga and the doctor said he responded really well. He went from PSA of about 3.5 down to 1.5 within a month. That lasted for a while, maybe 8 months or so, but then it started going back up, maybe August or September to 3 something and in November it was 5 again. God knows what it is now. He had a PSA test on Wednesday and a bone scan on Thursday. I am hoping that the reason the PSA went up because of the infection or antibiotics (I can't remember which) he was taking. He had been suffering a lot of throat pain from acid reflux and thrush so another doctor put him on some medications for that. His cancer doctor said antibiotics/infection can make the PSA go up. (Keep that in mind for your dad in case he gets an infection.) Come to think of it, I think she said that because she was puzzled as to why it was going up like that. I asked her why he could have bone mets if his PSA was 3 and she said it could be an aggressive cancer. She keeps sending him for these bone scans all the time which scares me to death but I have to keep reminding myself that it's for the best in case there is something there, which I'm expecting one of these times. Every time he has one I am always hoping, "please not this time" but I know eventually it will happen, but no time is a good time. I just hope they don't run out of medicines that can help.
Thank you for explaining what the radiotherapy can do. I would be scared to death, that's for sure. Did the radiotherapy help? Has your dad taken Provenge shot? How bad were his mets? A lot of them? Just a few?
Thank you for your prayers. I prayed for everyone here as well!

edit: My dad is taking or was taking Trelstar injections. (I know it's some sort of injection he always has to go for). I think the Casodex was what failed a long time ago.

Post Edited (LisaInIndiana) : 1/5/2018 10:52:15 AM (GMT-7)


Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 9125
   Posted 1/5/2018 11:34 AM (GMT -7)   
Did he qualify for that clinical trial I suggested?
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

LisaInIndiana
Regular Member


Date Joined Jan 2018
Total Posts : 22
   Posted 1/5/2018 12:04 PM (GMT -7)   
Tall Allen, I am not sure. I don't have nearly enough information to be able to tell. I would have to ask his doctor. I don't know that she'd let him participate because my dad has been a very depressed patient in the past. He's not the typical positive guy with a positive outlook. His depression was likely due to his mother being sick. She just died in November and since then he's been doing better, so maybe things will turn around for him now.

Correct me if I'm wrong but isn't the trial on that site already over?

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 9125
   Posted 1/5/2018 1:08 PM (GMT -7)   
It says they are still recruiting. Just call the principal investigator yourself, or email them. They are usually happy to talk to patients and caregivers. I don't see why depression would preclude treatment. This is really a great trial for him.

If his PSA went from 1.5 around June to 3 in September and 5 in November, then his PSA doubling time is 2.9 months, which would qualify him for the trial (They require that it be less than 8 months).
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

LisaInIndiana
Regular Member


Date Joined Jan 2018
Total Posts : 22
   Posted 1/5/2018 5:41 PM (GMT -7)   
Tall Allen, I am going to see what the doctor says next Wednesday. She will likely have another cocktail to try on him. I asked her last time or the time before if she has other medicines to try if this doesn't work and she said there are "a lot" of them. Then I asked what would happen if he got it in his bones and she told me he'd be on an IV, as if I was aggravating her for asking all these questions. I have already started writing an e-mail to the people at the trial.

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 9125
   Posted 1/5/2018 7:18 PM (GMT -7)   
I think she meant that if he got it in his bones, there are certain medicines, like Taxotere and Xofigo, that are given via an iv infusion. But "what if" is not a useful activity - deal with what is in front of you now and take it as it comes. As of now, there are no apparent metastases, which is part of what makes him eligible for that trial. I'm glad you are emailing them - be sure to ask if there are any costs associated with participating in that trial.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6792
   Posted 1/6/2018 1:09 AM (GMT -7)   
LisaInIndiana said...
142, you mentioned that the meds begin to fail, is it sort of like the ADT therapies and Zytiga, etc. where eventually they will fail? Maybe it is just my perception but it just seems to me that my dad progressed through the ADT therapies quickly. How many drugs are available for bone bets? Are these types of drugs stronger drugs than Zytiga, Estramustine, Casodex, etc? If my dad progressed quickly through those other drugs is it likely it will be the same with these or is that something that is up in the air?


Lisa,

My Zytiga "failed" because it caused me to have liver failure. It had my PSA at < 1.0, but a low PSA is not helpful if you suffer liver failure. So we stopped it. I moved to Xtandi as I mentioned earlier. My PSA finally started going up (so we can say it stopped providing the expected results). I am on Taxotere now.
I am not an expert on meds in the pipeline. TA has provided a lot of that information for you.

Every individual responds differently to meds, so I would refer you to the websites for the producers if you are looking for statistics.

My time frames on the meds are in my signature.
NOTE _ MY EMAIL HAS CHANGED!
Moderator - Prostate Cancer
(Not a medical professional)
DaVinci 10/09
IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 9/12-3/13, 6/14 to present
Prolia 6-mo inj 12/12 to present
Casodex started 12/14, end 3/15 after psa 30% rise
Zytiga 04-07/15 Xtandi 04/16-8/17
Taxotere 10/17-?

Kathy77
Regular Member


Date Joined Mar 2015
Total Posts : 64
   Posted 1/6/2018 4:21 AM (GMT -7)   
Hi smile ok...when diagnosed he had a psa of around 30 (early 2015)
He did brilliantly from then up until i’d say June 2017 when his PSA was up to 13. There had been a gradual increase over the previous months. The last one taken in December was 70 +. I have no idea why his meds weren’t changed when it started to increase... my mum goes with him, he doesn’t like a fuss... but quite honestly... I feel something should have been done at that point! As far as I can see aggressive pca needs to be treated aggressively!

When disguised his initial treatment plan was daily hormone tablets (not sure of the name of them now) leading up to 3 monthly injections/Zoladex. This was followed by radiotherapy.
When his psa started to rise hormone tablets were reintroduced (not sure if they were the same as previous) and he was told to take
a Bicalutamide tablet daily along with with the injection every 3 months.

This treatment continued until early December where it was decided he will start the Zytiga. So at the moment, all he’s having is the injections.

Infection can cause the psa to rise so let’s hope that’s the cause of the increase in your Dad’s psa. Waiting for scan results is horrible, try not to think the worst and even if anything were to show up that does not mean the end. Spots were visible at diagnosis stage with my Dad and he’s still here. With regard to radiotherapy, I would say that his first round of radiotherapy did help as he was well, so I presume it slowed things down. The last session of radiotherapy... I’m not sure, I’m hoping it helps. Please note that we really aren’t sure why he became really quite ill following it, I’m pretty certain that this doesn’t happen for all. The guys here who are far more knowledgable than me suggested his decline wasn’t related to the radiotherapy. His nurse said he could feel that way for up to 6 weeks following radiotherapy, so it’s a tricky one. All I can say is that it coincided with his bad spell, but was probably a combination of things to be honest.

My Dad hasn’t had the Provenge shot and I would like to know more about it, I’ve read of many men doing well with it. Bone mets, it’s really difficult as my parents go to see the consultant so I go off what they say. Apparently spots were visible at diagnosis and I’m presuming there were not a lot as it wasn’t mentioned, all that was mentioned was that it was in a lymph node, in an unusual place and that lymph node couldn’t be radiated because of its position. In the words of my Mum ‘there are spots scattered up and down the spine/lumbar region.’ They are not near any nerves which is a good thing as there is spinal compression to watch out for...I just tell myself, they are still treating him so there is hope. Ok, not for a cure but for as comfortable life as possible.

At the moment he’s doing well in himself. Stay strong, it’s a rotten thing for all involved but I’m sure everything is being done that can be done.

LisaInIndiana
Regular Member


Date Joined Jan 2018
Total Posts : 22
   Posted 1/6/2018 6:46 PM (GMT -7)   
Tall Allen, you are probably right. She probably just meant that there were meds for bone mets but there are people that worry a lot, like myself. I know it's not doing me any good but it's very hard for me not to worry about him. I don't know if it is worse to sit and worry and prepare yourself for the worst or feel blindsided with a bad result. Sometimes I think the disease is worse for the loved ones than it is with the person who is sick.

Kathy, I researched Zoladex, it seems to be a hormone based treatment. I don't know that it would work for my dad because he is hormone resistant now. But the thing is, she still has him get his Trelstar shot. (I think that's still the one he takes.) She told him to continue his estramustine because that might be helping some.
Is your dad becoming castration resistant? I ask because it says on their site that the medicine is for that. Has hormone therapy stopped working? I heard that Zytiga is a good medicine and my dad lasted 8 months on it. Can your dad take radio therapy again after this time if his mets get bigger? Did your dad's mets shrink when he started treatment for the first time?
I have been wondering if it would be better to catch the cancer at a later stage so they have all that time to try the hormone treatments vs. treating with hormones the whole time before it goes to the bones and then you become resistant and the only thing left is chemo or immunotherapy.
I go to the appointments with my parents. It is so nerve-wracking and stressful.

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 9125
   Posted 1/7/2018 12:35 AM (GMT -7)   
Lisa said...
I don't know if it is worse to sit and worry and prepare yourself for the worst or feel blindsided with a bad result.


That's an easy question to answer - it's MUCH worse to sit and worry because what you're doing is rehearsing anticipated suffering continually and thereby causing much more suffering for yourself. It's a process that feeds on itself until you can do nothing but think about it, and it saps all your energy. I've heard many caregivers claim that it is necessary to "prepare oneself." Well, I can speak from personal experience to tell you that there is no such thing. It's a lie you're telling yourself to justify all the time you spend ruminating on future possibilities that may or may not come to pass. It causes much less suffering to just take it as it comes.

But getting out of the mode of continually ruminating on imagined future scenarios is easier said than done. One can't just "buck up" or "be strong" - that attitude is even worse. Those sad feelings are not something to avoid. I learned how to stay focused on the present moment through a combination of psychotherapy and Mindfulness. I took classes for about 2 months until it became a habit of mind. It's really very easy, but I think it helps to do it in a class setting. What I learned was the opposite of avoiding thoughts and feelings - instead, feeling those things all the more fully, and examining those thoughts and feelings closely, observing yourself as you think and feel them. Somehow, that makes it quicker to go through those feelings; avoiding them only makes them last longer. There are mindfulness classes everywhere these days - try googling it for your city.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

Kathy77
Regular Member


Date Joined Mar 2015
Total Posts : 64
   Posted 1/7/2018 1:25 AM (GMT -7)   
Hi smile My Dad has stopped responding to the hormone treatment too so I'm presuming he will discontinue the Zoladex once the Zytiga starts. At the moment we are in limbo, just waiting to start the new treatment. I'm glad your Dad did well on it, I believe some last years on it. It's so tricky, everyone is different and we just don't know how each person will react to the different drugs. I hope that your Dad's next meds work for a long, long time. I have read that Zytiga along with chemo, introduced before hormone resistance can be successful and slow down disease progression. Some of the more knowledgable people here will probably know more about that. I realise that your Dad stopped responding to the Zytiga though so I'm not sure if this would be appropriate.

I'm presuming that my Dad's mets did shrink or at least were controlled for a long time as from diagnosis point up until the psa rose he did very well and I'd say that was for around 2 years. I will ask if radiotherapy can be used again, I'm not sure. I've read many stories of men with many bone mets who have done well and lasted years, please focus on that. I know I am. As you will notice from one of my recent posts I have my questions but like all of us, we just want the very best for those who are dealing with this. Your Dad is lucky to have you with him.


I found this link quite useful, just a few options mentioned. You may well have seen it already.
https://www.pcf.org/c/when-treatment-stops-working-blame-resistance/

Sending prayers your way and please keep us informed as to how your Dad is doing. X

Post Edited (Kathy77) : 1/7/2018 1:29:43 AM (GMT-7)

New Topic Post Reply Printable Version
41 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Thursday, January 18, 2018 10:43 PM (GMT -7)
There are a total of 2,918,737 posts in 320,271 threads.
View Active Threads


Who's Online
This forum has 159336 registered members. Please welcome our newest member, Drea9140.
268 Guest(s), 3 Registered Member(s) are currently online.  Details
schoolpsych, The Dude Abides, puppylover