Vacation of treatment: I got my 6 month... - Advanced Prostate...

Advanced Prostate Cancer

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Vacation of treatment

Drphil1938 profile image
33 Replies

I got my 6 month shot of Lupron first week of May . Next one is in November at that time I will be 82. That will be 18 months of treatment. I was diagnosed stage four, Gleaso 9 with 7 bone mets and a tumor in groin lymph node

At this time my T is nil and PSA is .1. My mets have scarred over and tumor is reduced by 50 percent. I get new scans in August and if they are still the same I am considering stopping the ADT and Zytiga. My MO said he doesn't recommend it but it is up to.me. The SE's are beginning to take a toll and I am looking for a better QOL.

Has anyone gone this route and what are your results or advice?

🍸🍸🤠

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Drphil1938
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33 Replies
Tall_Allen profile image
Tall_Allen

I don't think a vacation will impact survival. But the big question is whether it will increase or decrease your QOL. Uncontrolled metastases have their own side effects that may be worse for you than the ADT side effects. This is very individual.

Drphil1938 profile image
Drphil1938 in reply to Tall_Allen

I guess the use of the word vacation was wrong. Maybe temporary stoppage until PSA begins to increase is better phrasing.

Tall_Allen profile image
Tall_Allen in reply to Drphil1938

"Vacation" is a good choice of words, but PSA will increase some before you get full testosterone recovery. How much PSA increase, or PSADT, are you willing to put up with? There are no rules about the best way to do intermittent ADT - it depends on what you are comfortable with

LearnAll profile image
LearnAll in reply to Tall_Allen

That's very true....different studies used different upper set points, some used PSA 10, some even used 20 . My personal opinion is that people with intact, untouched prostate should fix their upper set point at 4...because if PSA starts going upwards of 4 means most likely it is coming from prostate cancer cells and not from normal prostate tissue. Because normal prostate tissue only makes less than 4 PSA.

In China, they are using upper set point of PSA at 1.0 (new chinese protocol) Also, note Asians have average normal PSA of only 3. Compare it to Africans who have normal PSA as high as 4 or even 5. They have large prostates.

tallguy2 profile image
tallguy2 in reply to Drphil1938

You can try this. The results can vary considerably. My PSA accelerated rapidly when I stopped ADT. But my Gleason score is 9. For most men with advanced PCa it is ADT for life.

LearnAll profile image
LearnAll

I am not going to encourage you or discourage you about going on ADT vacation. I am on vacation myself for last 6 months...so far everything is great except that T is missing in action. (stil <5) PSA still 0.2 But our cases are different.

Here are some plain facts:

Its very individual....there are men whose Testosterone roar back within 3 months and PSA starts rising fast AND then, there are men who still are waiting for testosterone to come out of its turtle shell even after 2 years and PSA is lying dead still undetectable.

So its very individual and there is no way to know what will be the dynamics of your T and PSA after stopping ADT.

Doctors will not easily allow ADT vacation for reasons of legal risk if some bad outcome happens to you or just to avoid extra hassle which comes with close monitoring of PCa while you are on vacation. I confess I rebelled against my Onco as she flatly refused saying"its risky"

She is right...its risky but their is a way out...you need to watch markers very frequently and spot any wrong trend as early as possible and be ready to jump back on lupron train if needed.

I am monitoring PSA, total and free T, ALP, LDH, CRP, CBC, CMP every 15 days and making graphs to spot any wrong turn my markers take, Also, being aware of my fitness and energy level. If I can finish my 5 mile brisk walk every day...probably there is no trouble in my vacation paradise.

Bottomline: ADT vacation is not for faint hearted. Of Course, there is risk involved.

But..its also possible that you may turn out be very very lucky falling in the category of those 6% men whose T never recovers and PSA never goes up...Free Lupron for life !

Schwah profile image
Schwah in reply to LearnAll

Hi LearnAll. I too am on a “vacation”. I had focal chryo about 10 years ago. About 3 years ago my PSA rose and two MRIs of my remaining prostate showed nothing. So I did a c-11 acetate scan (psma scan was not yet available) and found 3 mets which I zapped with SBRT and did chemo lupron and zytega for 21 months and hit .01 psa before I started my vacation 10 months ago. My PSA has slowly risen to 2.4 yesterday and my T is up time 130. . Because there’s no way to really know if my psa was from my healthy prostate tissue, I’ve done two psma scans at ucla and both were clean. I have a third one scheduled in a month. The plan is to re start meds if anything shows up on my psma scans and/or if my PSA gets to 3.5 or 4. My MO is supportive and I get a second opinion from Dr. Drakaki at UCLA. Neither one however pays much attention to any of the other markers you test for (T, ALP, LDH, CRP, CBC, CMP). Based upon input from this site I look at my Albumin (4.3) and my CRP (.05). I think those are both good, right ? But no clue what the others mean. Can I ask my MO to add those to my future blood tests? Can you give me a little guidance as yo what they mean ? Any other thoughts on my current game plan would be greatly appreciated. Any other scans you’d suggest in addition to the psma scans ?

Schwah

LearnAll profile image
LearnAll in reply to Schwah

Schwah...good to know that you are on Intermittent ADT program. You are resourceful and therefore you have luxury to do PSMA scans frequently to monitor status of cancer. Also, you are being watched by two doctors. So you don't need all one dozen markers q 2 weeks.

I am not doing scans so I have to fully depend on biomarkers and performance status.,

When doing Intermittent ADT, we have to assume that first 3.5 of PSA is coming from normal prostate tissue (in case of untouched prostate) and plan upper set point accordingly. If you do scans monthly, you have more capacity to stretch your off perio

until any shining golden dots appear on PSMA scans.

Reason for my using so many markers is that I am taking risk of Intermittent without approval of my Onco so I have to be more vigilant.

Its 6 months after stopping ADT and my T and PSA has not moved even an inch. Can you share your timeline of return of T ?

RonnyBaby profile image
RonnyBaby in reply to LearnAll

I can give you a quick reference point (just reading posts ..)

Have been on vacation for about 18 months.

My PSA stayed < 1.0 for about 15 months - below 0.3 for 12 months

Now at 1.3 (nearly doubled in 3 months from 0.7)

My 'T' is within low normal ranges (about 33% on the scale)

My MO says - wait and see but that last rise is noteworthy.

MO also says - I've seen men stabilize around 2 and slightly above / below.

IF I go above a ceiling (TBA), we will likely do monotherapy with Casodex and try to cycle for QoL for evermore .....

Without 'T', don't expect to see much PSA, although it is an indirect relationship and PSA isn't gospel for all things PCa.

Hope this helps to see how it can work ...

Schwah profile image
Schwah in reply to LearnAll

I always had a relatively low T before any of this. I hear now that’s a recipe for poor prognosis as is my Gleason 8. However my relatively slow PSADT and my .01 nadir, and my ogliometastatic condition (3 mets) are all good signs. My T bottomed out at 5. I slowly increased over my first 11 months of vacation to about 125. I feel great. But I never felt horrible on lupron and zytega. I’m sure my weight training regimen helped a lot.

Schwah

LearnAll profile image
LearnAll in reply to Schwah

Very low Nadir T and Nadir PSA are good prognosis signs BUT having lower T before treatment is a not a good prognosis sign.

People who have high T (above 500) before diagnosis usually have less aggressive prostate cancer.

And their T after stopping ADT also recovers at higher level. Weight training DOES help.

Schwah profile image
Schwah in reply to LearnAll

Good luck on your journey my friend.

Schwah

Horse12888 profile image
Horse12888 in reply to LearnAll

Intermittent ADT is not riskier than continuous. I would be looking for a new onc.

BigSwede profile image
BigSwede

Could take up to three years for your T to recover at your age. So do not count on more energy and better physical strength in the short run. What you will get stopping ADT is less workload for your liver. Which could be good of course.

I am 79 and have had ADT for 12 months and Zytiga for 11 months (partly concurrently). Now starting Docetaxel and my doctor wants me on ADT (triptorelin) again also. Normally that would be OK but my PC is totally androgen independent so I am doubtful.

LearnAll profile image
LearnAll in reply to BigSwede

Intermittent ADT is not safe at all if your PCa is totally androgen independent.

BigSwede profile image
BigSwede in reply to LearnAll

Wełl, I am not thinking intermittent ADT. I am thinking no ADT at all

Background:

Bicalutamide for seven years, intermittent treatment. Started a new period late 2017, PSA 8. Summer 2018 , PSA 1. Fine and dandy. Doctor thought continue with B. But PSA started rising to 3,5, 7. So doctor started ADT. PSA kept rising to 16, 23 in June 2019.

Started Zytiga, after three months PSA 8. Great! But after another three months PSA 13. Not so great. And three months later PSA 51. Really worrisome.

Switched Prednisolone to Dexamethasone, kept Zytiga. Three months later PSA 121.

Do you see my point? Why try desperately to nullify my T when the av PC just could not care less?

LearnAll profile image
LearnAll in reply to BigSwede

I see...its complex..you might need chemo and other newer type of treatments due to your PCa becoming androgen independent.

BigSwede profile image
BigSwede in reply to LearnAll

Starting chemo June 23. Will probably defer the Triptorelin until I see how my response to the Docetaxel is.

Will probably anyway have castrate levels of T for a number of months more, with or without ADT.

Ramp7 profile image
Ramp7

I'm traveling a similar path, 65 years old. Been on Lupron since December 2019 and Zytiga added May 2020. PSA 0.2. The MO says let's try 18 months with a possible pause in treatment. Presently tolerating ADT pretty good. The more active I am the less effects I notice.

LearnAll profile image
LearnAll in reply to Ramp7

Newer studies say that its better to start intermittent ADT earlier (say after 8 or 9 months of ADT) as killing ALL androgen sensitive cells in one go can turn the remaining one into androgen independent. Discuss this with your Onco.

keepinon profile image
keepinon in reply to LearnAll

Can you give me a reference or 2 of those newer studies.? I am at the point of deciding to DC after 18 months or add more time of ADT to 24 months. I keep reading conflicting reports. Much appreciated!

LearnAll profile image
LearnAll in reply to keepinon

Keepinon, Laurence Klotz in review article dated Dec2012 in current oncology (vol19) talks about suitable induction period for ADT... He writes " In most patients, 8-9 months are required to achieve a PSA nadir . After 2 years or more of continuous ADT, 50% patients will fail to recover testosterone . Thus, an induction period of 8 to 9 months of ADT seems reasonable."

JingSong Zhang is a top researcher of intermittent ADT based in Moffit Center, Tampa. He has developed mathematical models of how best to prolong androgen sensitivity of PCa. Look at his studies esp. "prostate -Specific antigen dynamics predict individual responses to intermittent androgen deprivation" A lovely paper.

keepinon profile image
keepinon in reply to LearnAll

I will check them out. Thanks!

Fitzbruce1 profile image
Fitzbruce1 in reply to LearnAll

Learn all-

I met w Dr Zhang last year. I go to an Orlando Oncologist so I was getting a second opinion. With my PSA at a steady .02, he advised me to do chemo. He said the Zytiga is probably not doing anything anymore. I was on board but chickened out and stayed on ADT.

I am interested in a vacation after 2 full years on ADT. Can you tell me how I can find the paper that Dr Zhang wrote that you alluded to?

LearnAll profile image
LearnAll in reply to Fitzbruce1

From PubMed. See my answer above to keepinon.

Ramp7 profile image
Ramp7

Shall do, thanks.

Magnus1964 profile image
Magnus1964

I am not a fan of intermittent ADT. I feel that stopping a drug gives the cancer a chance to work around it. If you feel that zytiga and Lupron are diminishing your QOL you might at least consider a milder ADT drug with fewer side effects, i.e casodex.

Just a thought.

Drphil1938 profile image
Drphil1938 in reply to Magnus1964

I appreciate the idea and will discuss the idea with my MO. 🍸🍸🤠

j-o-h-n profile image
j-o-h-n

I don't have an opinion one way or the other.... but as you know I'm with you all the way...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 06/07/2020 7:11 PM DST

Drphil1938 profile image
Drphil1938 in reply to j-o-h-n

Thank you! I wouldn't have thought any thing other than that. 🍸🍸🤠

wolf2gang120 profile image
wolf2gang120

Its been ten years for me......i have no testosterone yet

I would not recommend to stop, unless you at 82 are ready to hasten the end of life. Stay with what is working and don’t even think about a vacation. Listen to your MO........ follow his recommendations,...... enjoy life.

GD

Drphil1938 profile image
Drphil1938 in reply to

There are some other options that i will discuss with him but I'm in no hurry to cross-over to the next life. That will happen soon enough. The SEs warrant review along with QOL. However, his advice will carry the most weight in all decisions. Thank you to all who have responded it has been helpful and informative. 🍸🍸🤠

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