PSA 1550

VascodaGama

ADT works equally no matter where PCa hides

Sid,

Thanks for the update. Your post is ambiguous. Is the "new cancer", you refer above, another sort of cancer (like colon cancer, pancreatic cancer, etc) or the doctor is referring to newer PCa metastases at other organ?
Surely he is not referring to a newer type like the small cell prostate cancer as this, apart from not producing PSA (your husband had 1550) the pathologist did not diagnosed it. The CT scan would not differentiate on the type of cancers too.

Prostate cancer metastases in bone, lymph nodes and lungs, etc, (stage 4 patients) are treated equally no matter where it hides and the therapy should follow working equally too. As far as I know at present there are only two ways to control wide spread cases which include manipulations with hormonal and chemo drugs, both palliative. Radiation cannot be used widely so that doctors reserve it to treat pain in bone when it becomes required. This increase in the PSA is confirming that the present treatment is not working. It is necessary to change it to something proper and powerful the soonest, independently if newer metastases exist.

Cancer in lungs is serious and a bad signal because it is close to our vital organs. Chemo or a combination of it with hormonal may work well but the side effects will be nasty. His quality of life will deteriorate as time goes by. I hope the treatment manages to stop the spreading. You should think in enjoying life the best you can while he is asymptomatic.

Best of lucks to you both.

VG

 

Georges Calvez

New cancer

Hi there,

I think he must have been referring to a suspicion that new metastases have become large enough to be visible on a scan.
Prostate cancer grows and metastases at very different rates depending on the type, we have to hope that this is one of the more indolent types.
May I suggest asking your doctor if your husband can be changed from Lupron to Firmagon as it seems to be more effective in lowering PSA and maybe controlling the rate of growth of metastases.

Best wishes,

Georges

Sidtippy2

Thank you for responses and

Thank you for responses and recommendations.  And yes, I meant new metastases of prostate cancer. Spent some time talking to his case manager on Friday, first time I have talked to this RN who spoke to just how poor his prognosis was from beginning, I guess we just didn't realize how bad it was/is.  So glad to have CTs ordered and very anxious to get results to know what we're facing at this time. 

Sidtippy2

Update

Hubby had CT of chest, abd and pelvis on Monday, results show a number of new lesions and several tumors that are larger from last scans, 2 are smaller.  New growth is in the bones (where there were already a number of tumors) and a suspicious spot on bladder.  Recommended a cystoscopy, hubby said no thanks for now, won't impact treatment if bladder is involved.  starting Xtandi for at least a couple months and will follow PSA closely.  If it doesn't respond will rescan and start traditional chemo, Taxotere.  Much more aggressive and fast growing than we anticipated.  Last two weks have been hard, feels like getting diagnosed all over again.  This week is a bit better, at least we know what we're facing.  

Georges Calvez

Bad news
Hi Sid,
That does sound like bad news but fingers crossed for the best
I guess that you have already done this but here is some brief information on Xtandi, as you would expect for a potent drug it can have some strong effects apart from the desired ones;

https://en.wikipedia.org/wiki/Enzalutamide
https://www.drugs.com/pro/xtandi.html

Best wishes,

Georges

Sidtippy2

Thank you Georges, I'd seen

Thank you Georges, I'd seen the wikipedia site but not the second one.  Scary potential side effects.  

VascodaGama

The new protocol is more complete

Sid,

Changing to Xtandi is your best step for the moment. Your doctor is wise in waiting for the results before starting chemo. Two or three months without Taxotere don't make any difference from the results of the chemo if started now. Lupron + Xtandi plus Taxotere is a multimodal approach that is showing good results. The side effects from each treatment are added so that your husband may expect to get more symptoms. I would take the opportunity of this period before chemo to get a total lipids panel to check the immune system (try improving it to better counter the effects of the chemo) and get a cardio exam (ECG + etc) as it will be affected by the above drugs. Stopping Casodex will help in understanding the work of Xtandi.

I agree with your husband's opinion on skipping the cystoscopy this time. He got the results of the previous one which wouldn't have much different findings. He must now focus on measures to take to counter the expected side effects. Something regarding diet and life style changes. I wonder his age.

You are wonderful for being so involved in his problem. You may convince him in going out for a long drive outing. A week-end at some place or visit another country.

Let's hope for the best.

VG

Sidtippy2

Medication side effects?

As many of you know, my husband is having a rough winter.  His PSA has gone up month after month and was 911 on 1/11.  He was enrolled in a study and started new regime almost 4 weeks ago, now on Zytiga 1000mg daily, prednisone 10 mg daily, and either ollparib 300 mg bid or a placebo.  He started feeling a lot better 2-3 weeks ago but is feeling really bad the last 5 days.  extreme fatigue, worse than he already was experiencing, achy, chllled, dizzy, nausea, vomiting and diarrhea, no appetite but drinking water fine.  I know these are all possible side effects of his meds, but am surprised it took almost 4 weeks to hit him and that it came on so strong.  Any experience with these meds and/or side effects?  We see dr Friday and get PSA and other labs drawn then.  

kidclutch

Sidtippy2 said:

Medication side effects?

As many of you know, my husband is having a rough winter.  His PSA has gone up month after month and was 911 on 1/11.  He was enrolled in a study and started new regime almost 4 weeks ago, now on Zytiga 1000mg daily, prednisone 10 mg daily, and either ollparib 300 mg bid or a placebo.  He started feeling a lot better 2-3 weeks ago but is feeling really bad the last 5 days.  extreme fatigue, worse than he already was experiencing, achy, chllled, dizzy, nausea, vomiting and diarrhea, no appetite but drinking water fine.  I know these are all possible side effects of his meds, but am surprised it took almost 4 weeks to hit him and that it came on so strong.  Any experience with these meds and/or side effects?  We see dr Friday and get PSA and other labs drawn then.  

Hi, Sid!

My dad had advanced cancer with bone mets, and is on Zytiga which he tolerates pretty well, though it is recently failing (developed new tumor in the shoulder blade). I wanted to ask about the olaparib--did your husband have Foundation One testing done to get enrolled? It's the genome sequencing biopsy to test for over 300 mutations. My dad is having it done this Friday, would love to talk to someone else going through drug trials to treat potential tumor mutations. So sorry to hear about your husband's difficulty with the regimen.

VascodaGama

His natural body defenses may be in jeopardy but will get better

Sid,

I also believe that the side effects are from the treatment but the surge of the symptoms at four weeks makes me think that your husband is taking the Olaparib inhibitor for real. This sort of medication takes time in starting its effects (depleting the body from those enzymes along its action) which alters in time the body response to what is missed. Olaparib attacks one of those switches in the DNA that provides survival to the cells we are trying to destroy. This resists and acts against the treatment. Pulling down these switches allows free access to Zytiga to act fully. Surely the immune system reacts trigging along a series of symptoms until the situation stabilizes. I wonder what his doctors will tell you but you may inquire what you can do to counter the effects and if the treatment can be stoped earlier in case the situation doesn't improve.

I am sorry for the occurrence. I hope things get better.

Here are details on the drug and possible side effects. There is a note of caution that you should consider because the treatment will pull down some of our natural defenses;
http://chemocare.com/chemotherapy/drug-info/Olaparib.aspx

Best wishes.

VGama 

Sidtippy2

Ineresting update...I

Ineresting update...I mentioned last week that my husband was feeling worse than ever the last week or 2.   He ended up getting admitted to the hospital for a perirectal abscess and had surgery yesterday.  We couldn't visualize the abscess until thursday night, saw dr friday and got admitted.  He was really really sick, surgery saturday and is much better.   The abscess was even larger internally than externally, and called it a horseshoe abscess which means it went up both sides of the pelvic cavity, only happens in 5% of abscesses.  He is MUCH better post op, has 2 rectal drains that he will go home with, home in a couple days.  At first we were afraid the abscess was related to the cancer in his pelvis, but it looks like it was a random abscess, not related to cancer.  Perhaps such a fast growing infection is related to him being more immunocompromised than we realized.  

They are holding all study drugs until he is over this infection, so probably 4 weeks or so.  We are disappointed ok but totally understand the need to heal first.  

We did get good news, his PSA is down to 300, and it was 911 last month.  So the new meds and/or study drug was working. 

And sorry to not answer sooner Kidclutch, I'm not aware of the genome sequencing series being done, though he did have many labs done before being approved.  Interestingly my hubby was initially on Casodex and that worked for about 6 months.  When it stopped working is when they realized he might qualify for this study.   His meds now are Zytiga and prednisone, plus either Olaparib or placebo med.  He's now off all 3 of those for now.  I hope your father is doing well. 

kidclutch

Sidtippy2 said:

Ineresting update...I

Ineresting update...I mentioned last week that my husband was feeling worse than ever the last week or 2.   He ended up getting admitted to the hospital for a perirectal abscess and had surgery yesterday.  We couldn't visualize the abscess until thursday night, saw dr friday and got admitted.  He was really really sick, surgery saturday and is much better.   The abscess was even larger internally than externally, and called it a horseshoe abscess which means it went up both sides of the pelvic cavity, only happens in 5% of abscesses.  He is MUCH better post op, has 2 rectal drains that he will go home with, home in a couple days.  At first we were afraid the abscess was related to the cancer in his pelvis, but it looks like it was a random abscess, not related to cancer.  Perhaps such a fast growing infection is related to him being more immunocompromised than we realized.  

They are holding all study drugs until he is over this infection, so probably 4 weeks or so.  We are disappointed ok but totally understand the need to heal first.  

We did get good news, his PSA is down to 300, and it was 911 last month.  So the new meds and/or study drug was working. 

And sorry to not answer sooner Kidclutch, I'm not aware of the genome sequencing series being done, though he did have many labs done before being approved.  Interestingly my hubby was initially on Casodex and that worked for about 6 months.  When it stopped working is when they realized he might qualify for this study.   His meds now are Zytiga and prednisone, plus either Olaparib or placebo med.  He's now off all 3 of those for now.  I hope your father is doing well. 

No apology necessary, so

No apology necessary, so happy to hear your husband is on the mend and there was a PSA response. Hope he gets back on those medicines soon to get even better!

Sidtippy2

Quick update, hubby continues

Quick update, hubby continues to improve from recent illness.  We was approved to go back on study with 2 days to spare, whew, that was way too close.  More great news, his PSA is down to 70, even though he was off meds for 3 weeks.  

Now for the not great news, he also had bone scan and full CTs scans.  He had a nodule on rib, it is now much larger.  He also had one nodule in right lung, now he has multiple lesions.

We were shocked there is new growth given his PSA had decreased.  Any perspectives or opinions?

thanks, as always

Max Former Hodgkins Stage 3

Sidtippy2 said:

Quick update, hubby continues

Quick update, hubby continues to improve from recent illness.  We was approved to go back on study with 2 days to spare, whew, that was way too close.  More great news, his PSA is down to 70, even though he was off meds for 3 weeks.  

Now for the not great news, he also had bone scan and full CTs scans.  He had a nodule on rib, it is now much larger.  He also had one nodule in right lung, now he has multiple lesions.

We were shocked there is new growth given his PSA had decreased.  Any perspectives or opinions?

thanks, as always

Bone mets

sid,

The nodules can probably be killed via spot radiation. Doing this is somewhat common agains PCa on the bone or other organs.  Radiation might beat it back far enough to significanly improve prognosis.

ma

VascodaGama

Radionuclide Therapy

I am sorry for the news on the additional findings. As Max comments above metastases in bone can be treated with spot radiation for the intent of cure, if these lesions stand at propitious locations, but the clinical trial your husband is in may not permit to do it now. You will have to wait till the end of the trial. Apart from that, he should have additional scans to confirm if this spot is the only one. Bone scintigraphy scans do not detect small lesions lesser than 5mm.

As you know, ADT is palliative and do not kill the bandit. It manages to get a grip on the issue and hold control during a period that can last years. Your husband's case is extensive and considered systemic for the mets at other organs. This is a condition standing close to the end of available curable therapies. Any added treatment will add more side effects and prejudice his quality of life. The events you have experienced are common in similar PCa patients. The PSA may continue to decline but somehow the more aggressive grade 5 cancer never dies. In fact these types produce little PSA.

I wonder if your husband would do well with a more defined targeted therapy using radiopharmaceuticals like the LU177. This is a treatment in action since 2011 that have shown success in systemic patients, in particular in aggressive forms of cancer. They call it "Theranostics" and it is in practiced in several clinics arround the world but the LU177 can be obtained in Europe (Germany) and Australia. The following links got the details. You can also see the video by Dr. Richard Baum of his symposium at Johns Hopkins. This is very promising means of treatment in the future to all of us independently of where the cancer is located (contained, localized or at far places). LU177 used the now common enzyme/protein PSMA to deliver the blow at cellular level as a stealth missile.

I was diagnosed when I was 50 years old. I am also systemic but the type of the cancerous cells in my case are sort of indolent (Gleason 2+3; score 6) that allowed me already 18 years of continuous fighting. I feel sorry for your husband that is so young but with such an aggressive bandit.

Here are the links for your reference only;

http://www.prrtinfo.org/

https://vimeo.com/124232213

https://www.youtube.com/watch?v=9Rl6hBCpf7g

https://www.youtube.com/watch?v=46rYKxsq-a4

https://www.carcinoid.org/doctor/richard-p-baum-md-phd-nuclear-medicine/

http://theranostics.com.au/what-is-theranostics/

https://pubs.acs.org/doi/10.1021/bc200151q

 

Best wishes,

VGama

Georges Calvez

Gleason, PSA and metastases

Hi Sid,

I think that I have written elsewhere on this subject but maybe it was eaten in the great data loss.
There is a close to direct relationship between the size of the tumour and the amount of PSA produced in the earlier stages of prostate cancer eg the bigger and more extensive the tumour the more PSA it will produce. It should be noted that some tumours can be very small but produce a lot of PSA, the process for making PSA is in overdrive in these cells.
There is also a relationship between PSA and Gleason number. There is a grading between Gleason 3, 4, and 5. Gleason stage 3 cells are really very like normal prostate cancer cells, 4 is in the middle and 5 are only very poorly like prostate cancer cells. Men with cancers with low Gleason grades will often have high PSA scores and those with high grades will have lower PSA scores for the same size of tumour activity. This is because low grade prostate cancer cells are still trying to be prostate cells to a certain extent while higher grade cells have given up on that.
It is also the reason that low scores like Vasco and myself have local invasion, usually in the prostate bed but it can be in adjacent tissues. The cells do not metastase easily and they do not go far, even when they get there they still try to be prostate cells, making PSA, and crucially in some cases continuing to require stimulation by testosterone, etc to grow for a long time so various ADT strategies can be used to teat it almost like diabetes. It might get you in the end but it will take some time.
A high score like your husband has cancer cells that are very unlike normal prostate cancer cells, they tend to metastase quite fast so he had quite extensive mets, they also tend to adapt quite quickly to the absence of androgens. So his PSA fell on the start of treatment and then rose again as the cancer adapted to the new environment. I would guess that the treatment is affecting some of the cancer so his PSA has fallen but the most aggressive cells in the mets are not making much PSA and they do not seem to need a lot of androgens to grow either.
If there are relatively few mets then maybe spot radiation will help.
You need some luck now!

Best wishes,

Georges

 

Sidtippy2

Thank you all, I always

Thank you all, I always appreciate your input.  Talked to oncologist and he's not making any changes for now.  CT of chest, abd and pelvis as well as bone scan again in 2 months and will go from there.  what a roller coaster of emotions.

Georges Calvez

Good luck

Hi Sid,

Good luck, these things can turn and get better.
You never really know with prostate cancer.

Best wishes,

Georges

Sidtippy2

Update

Hello friends, it's been a long time since I've posted.  My husband's journey continues.  He had been doing well on the study he started inJan 2019, but unofrutnatley he's stopped responding to that treatment.  PSA is back up to 962 (highest it's been since he was diagnosed), after getting down the the 20s at lowest.  Recent scans show disease progression  and he's been taken off study.  oncologist was hoping to start on another study with taxotere and katruda/placebo. Have to wait 30 days to start second study and then he got quite sick last week.  Vomiting and significant pelvic/abd pain, ended up needing to be admitted and his labs were wonky, long story short needed surgery as he wasn't urinating and ultrasound showed total compression of ureters.  He was able to have bilateral stents placed and went home 2 days later but is still experiencing signifcant abd pain.  Dr thinks the involved lymph nodes in pelvis are compressing the ureters and kidneys.  His pain is still hard to manage, even with oxycodone and hydrocodone with Tylenol.  Now dr thinks he may have carcinomatosis.  As I looked that up it looks awful, with very poor prognosis, but also looks like it's really unusual in prostate cancer.  Anyone heard of this?  Or have any other insights?  

I hope you are all doing well, I'll be reading the recent posts and catching up a bit!

VascodaGama

Quality of Life is more important that PSA

Sid,

Thanks for the update. I am glad for knowing that the treatment managed to extend the refractory condition (since 2018). The pain could be due to compression to the nerve bundle surrounding the bladder or kidneys. The scan may identify the inflammation but to treat it will be challenging. One could increase the dose of opioid painkillers (oxycodone) but high doses are risky as it may cause liver failure. Ibuprofen is used in migraine pain and rheumatoid arthritis which usually involve affected nerves. You may inquire his doctor on the matter.

The increase of the PSA is hard to avoid for the several metastases. In any case, the treatment should be now directed to alleviate symptoms. The quality of life is now more important than PCa. Be careful with any condition of anemia. I advice you to have more frequently a full blood panel test.

I hope things turn into your favor. Best wishes for yout husband, another hero in this our fight.

VG