CSN Login
Members Online: 4

You are here

CSN Outage 6/17/21

CSN will be down briefly for maintenance 6/17/2021, starting at 10pm EST. We apologize for the inconvenience. 

Possibly going back on ADT

Momschooling
Posts: 12
Joined: Nov 2020

Hi,

My husband only had a 3 month break from his lupron/zytiga (after being on it a year plus radiation for gleason 9 metasis to lymphnodes) and today we learned he may have to go back on. Basically his testosterone went back to normal (484) too quickly and with that,the psa went from undetectable to 0.3. He is still suffering from the lupron treatment and it seems strange his T is normal...The dr will recheck his psa in 6 weeks but if it goes up, he will likely have to go back on. Has anyone tried a hormone therapy that is less severe (Casodex?)but still keeps the testosterone in check? The lupron made him feel really awful and that is one of the reasons he finished it earlier than the dr would have liked.

 

Thanks!

VascodaGama's picture
VascodaGama
Posts: 3355
Joined: Nov 2010

Hi Mom,

It is most unfortunate to read that the bandit didn't keep dormancy. I do not recall your husband's story (age, extent of disease and treatments) but you need to choose wisely what to do next. Casodex is an antiandrogen that does not interfere with the production of testosterone but acts in avoiding the absorption of the stuff by the cancer. It works well for a period (long in some guys but short in others) at the cell's androgen receptors (their ugly mouth). The drug's biostructure mimics the testosterone enticing the bandit to try to absorb it but the stuff gets stacked prohibiting absorption of the real androgen.
The baddy with Casodex is that leads to refractory once the bandit manages to unclog the obstruction and starts feeding on the casodex itself. This happens with all types of antiandrogens (Zytiga too). One needs to be vigilant and stop taking it as soon as the PSA starts increasing continuously (three considerable increases from a nadir).

Firmagon may be a substitute to Lupron. It is an antagonist working similarly at the pituitary to stop production of testosterone but it is friendlier as it doesn't cause havoc to the extent of that caused by agonists (Lupron, etc), therefore with lesser side effects. It is more expensive than Lupron but cheaper than Zytiga. The pitfall of Firmagon is that it is taken on monthly basis.

In any case, the increase from undetectable (???) to 0.3 ng/ml can be considered low in a patient where Lupron had worked so well. I believe on intermittent approaches in hormonal treatments and you could explore possibilities in advancing with intermittent protocols in ADT. You should consult a medical oncologist specialist in PCa. You can also inquire on the continuing symptoms he is experiencing. Some doctors recommend estrogen patches to elliviate persistent hypogonadal symptoms. Estrogens are known to substitute lacking testosterone in the functioning of organs that depend on testosterone for its proper work.

Best wishes and luck in his continuing journey.

VGama

Momschooling
Posts: 12
Joined: Nov 2020

Thank you for all this information, very helpful. We can bring up the medicine you suggested to his oncologist. My husband is 59, was diagnosed 18 months ago with Gleason 9 prostate cancer that had spread to his bladder, local lymphnodes and one non local lymphnode. He was put on lupron/zytiga and had radiation. Scans all seemed to look good 1 year after being diagnosed this past December (no spread to bones that we know of) and the dr allowed him to go off ADT but with reservations. We are happy his dr is being proactive and wanting to stay on top of this, rather than just let the psa keep rising. Interesting about the estrogen patch, he will definetly bring up what you mentioned at his next visit. Smile

GeorgeG
Posts: 152
Joined: May 2017

Another feature of Firmagon is that with Lupron they usually add Casodex at the beginning to avoid the "flare" that comes when you start the Lupron class of drugs. Firmagon does not have this issue, as a matter of fact my doctor uses Firmagon alone for the first moth before switching to Lupron or staying on Firmagon as I did.

 

George

 

Momschooling
Posts: 12
Joined: Nov 2020

Very interesting about the Firmagon, it's worth a try if he does have to go back on.

hopeful and opt...
Posts: 2326
Joined: Apr 2009

You mention that your husband had scans. Specifically which ones are you referring to. There are various pet scans, some better than others in detecting cancers that exist. Various spots of cancers in the bones can be zapped when detected to deter the "bandit".

Momschooling
Posts: 12
Joined: Nov 2020

Hi,

He had a bone scan (not a PET) and a CT, he also had a cystoscopy because he had been having a lot of bleeding. Everything appeared to be ok...

hopeful and opt...
Posts: 2326
Joined: Apr 2009

There is a T99 technitisium bone scan and an F18 pet bone scan which is better for dectection.

There are various types of pet scans. There is an axium that is coverage by medicare, and is Okay.. There are also investigation pet scan which are better,and provide better dectection. Here in CA there is G68 PSMA that has just been approved. ucla and ucsf are two hospitals that provide this..Up until now there has been a 2700 charge for the scan at ucla. Some of the other major institutions in the United States also have or in the  process of developing "better" pet scans. These petscans are very effective in locating spots of cancers that can be erraticated. This is state of the art.

Best

Momschooling
Posts: 12
Joined: Nov 2020

The dr seemed satisfied, but do you think he should have had a better scan for the bones then? I know the liklihood of it being his bones is high considering his spread and gleason but we figured he was clear. If he has anything at all, then obviously he would not have stopped the ADT.

JJMWFF1955
Posts: 20
Joined: Apr 2017

I had Axumin Pet scan a week ago and when I went to Urologist yesterday the report showed that the cancer has mastasticized into two lympy nodes. 4 1/2 years ago the Dr did biopsy of prostate and found cancer Gleeson score of 8 and did 44 rad treatments and the Nadir after one year went to 0.3 then gradually up to 2.3 by March of 2021 so now I am back on Eligard and Dr wanting to do a new drug called Erleada but problem is my health insurance plan (Medicare Advantage) has denied. I cannot afford this drug as it would cost $13000 a month or about $150 K a year taking 4 tablets a day. After seeing this happen i wonder if a prostate cancer servivor has to be rich to get the right treatment if Insurance denies. ?

Josephg
Posts: 287
Joined: Jan 2013

Have you looked at GoodRx or contacted the drug company directly?  Many of these companies have options available for patients who cannot afford their commercial prices.  It is certainly worth a couple of hours of your time to check out and see if any cheaper options are available.

I was recently placed on Zytiga, a drug that costs $7000 per month at list price and $2000 per month out of pocket after standard insurance, both prices way above what I can afford.  I obtained a GoodRx coupon for Zytiga, which reduced to cost to $298 per month at Walmart.  While that is still certainly not cheap, it put the cost into a barely affordable price range for me.  And....  When I refilled the Zytiga prescription last month at Walmart, the cost was only $7!

GeorgeG
Posts: 152
Joined: May 2017

The other high end PET scan is Choline.

 

George

GeorgeG
Posts: 152
Joined: May 2017

My knowledge of bone scans is a couple of years old but at that time the conventional wisdom was that bone mets would not usually appear until the PSA was above 10 or so, especially early in the disease. Thats with old shool std bone scan plus CAT scan. With the newer PET scans thay can see disease spread at much lower PSA values, down in the low single digits but probably not at a value of 0.3. Thats said, later in the disease the cells can change form and start to proliferate without generating PSA as poorly differentiated cells so later, low PSA may not always mean no spread.  Scans subject you to radiation and are costly and stressful. That said when used prudently thay can signal two things that need action: adding more systemic treatment if soread is detected or if your lucky - find very limited spread that can be treated with spot radiation. This last possibility is not a uniformly held strategy across all centers. Mayo for instance looks for this, some of my local docs do not.

 

George

 

Momschooling
Posts: 12
Joined: Nov 2020

My husband had another psa check 5 weeks after the last and it went up a bit, however the dr said he's going back on ADT in July at the latest, and if his PSA reaches 2 (or close as possible) he wants to do a PSMA to see where the cancer has spread and do more radiation. He told us that he will have to be on this treatment for life :( He feels that because his psa went back to detectable so quickly after stopping, it's best to just remain on. I guess there is no end to this, just keeping it under control...I feel very sad for him having to be miserable again but praying it keeps the cancer in check.

VascodaGama's picture
VascodaGama
Posts: 3355
Joined: Nov 2010

Hi again, 

Can you tell us the numbers of the PSA tests?

I think it good in having a PSMA-PET but this exam is more reliable if done without the effects of ADT. The PSA should be over > 0.5 ng/ml. This exam can detect cancer at bone and soft tissues. 

The threshold of PSA =2.0 is the typical level for other popular PET scans such as the Axumin-PET or F18-PET (1.5 to 2.0).

ADT action does not depend on the PSA level. It works the same even if it reaches 1.0 or more. ADT is palliative and only manages some control of the disease. The pet scan therefore should be done with the intent of locating the malignancy to attack it with spot radiation, if it falls at appropriate areas.

Best wishes. 

VG 

 

 

Subscribe to Comments for "Possibly going back on ADT"