What to do after chemo?! Immunotherap... - Advanced Prostate...

Advanced Prostate Cancer
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What to do after chemo?! Immunotherapy trials!?

Kcski
Kcski

Hi,

My dad has advanced prostate cancer.

He does not have any bone metastasis at this time.

He just completed 6 rounds of chemotherapy and the tumors have shrunk significantly!

He now has to decide the next step of treatment.

He is 72, his Gleason is 9, and he has metastasis in his pelvis/pelvic lymph nodes.

His doctor suggested a couple of options:

1) only continue ADT and monitor PSA monthly

2) start Zytiga now

3) more rounds of chemo

What is everyone’s opinion?

I want him to get Immunotherapy. Everything I read says it extends life. IMHO life extension is what it is all about not PSA level.

Does anyone know of any trials for Immunotherapy (Provenge, check point inhibitors etc) he could get in at this time?

Does anyone have any additional advice on how to beat this darn thing back?

Many heart felt thanks and love to all those fighting,

Karyn

63 Replies
oldestnewest

Sorry you have to be here asking these questions. In one statement you said he has bone mets and another you said he doesn't. Could you clarify that? You can have bone mets that somewhat heal up and are no longer active so maybe that's what you meant?

What is his current PSA and PSA history? If you could give us entire treatment history with dates that would help us to help you.

Kcski
Kcski in reply to gregg57

Hi Gregg,

Thanks for your kind words!

He has NO bone Mets at this time!

His PSA now is 5.

Initially it was very high...approximately 10,000.

He was diagnosed 6 months ago with a PSA of 10,000. He is given ADT consistently and has just completed 6 rounds of chemo.

gregg57
gregg57 in reply to Kcski

Is his PSA still going down or did it hit is lowest point (nadir) already?

Kcski
Kcski in reply to gregg57

His PSA just got to its current low, 5, today. I am not sure what it will do in the future. So far it has always declined.

gregg57
gregg57 in reply to Kcski

I had the same diagnosis and treatments as your father. My PSA was 463 at diagnosis with extensive bone mets. I started chemotherapy for 6 cycles of Taxotere (Docetaxel) and saw my PSA go down to a low of .19 while on chemo. Early Docetaxel chemotherapy is recommended for men with significant bone metastases so I think your dad has had the right treatments so far. When I was through 3 cycles of chemotherapy, early Zytiga got approved. But when I finished chemotherapy, 3 different doctors said they wouldn't give me Zytiga until after I became castrate resistant. Their reasoning was that early chemotherapy or early Zytiga was approved before castrate resistance, but not both. They didn't want to add more toxicity and potential side effects on top of the chemo at that point. This past Monday, I talked to yet another doctor who had only done it once, but said he will no longer prescribe Zytiga after early chemotherapy. So I waited until castrate resistance before starting Zytiga and it has worked wonderfully for me. My PSA has been undetectable for a year now. So I am now 2-1/2 years from diagnosis.

I'm not a doctor, but I can tell you what I would do in his situation. I would continue on ADT only and watch the PSA. When it stops going down, levels off and starts rising I would either go back to chemotherapy or to Zytiga depending on how succesful the response was to ADT. That is: What the lowest PSA was and also how long it takes before it starts going up again. Two or more doublings with a PSA of over 2 and you know you are castrate resistant. So you would look at the time from diagnosis to that point.

Ideally you want a year or more on ADT before becoming castrate resistant. The better and longer the response, the more likely the second-line ADT agents including Zytiga will work. If the response is short and/or high PSA nadir, I'd look to chemotherapy and also at that point do molecular testing for treatable mutations.

You can run all of this by his doctor. Let us know what he(she) says. Hoping for the best for him.

Kcski
Kcski in reply to gregg57

Thank you for your story and information. That is so wonderful you are doing well:)!

Unfortunately, Provenge is only approved for men who are castration-resistant. Other immunotherapies have thus far failed to extend life, except in extraordinary circumstances. If he can get Zytiga, it has demonstrated ability to extend life in hormone-responsive PC.

Kcski
Kcski in reply to Tall_Allen

Thanks for the info! What is your opinion with regards to Zytiga now verse ADT now and monitoring PSA?

Tall_Allen
Tall_Allen in reply to Kcski

As I said, if he can get Zytiga, it has demonstrated ability to extend life in hormone-responsive PC.

Reply

Schwah
Schwah in reply to Kcski

I’d definitely add the Zytega now if his health is relatively good. I did early chemo and ADT and also did zytega With great results (.01 psa). I handled the side affects quite Well With a very rigid weight training program. As tall Alan says, the studies have shown early Zytiga extends life substantially more than Zytiga after castrate resistance.

Schwah

DarkEnergy
DarkEnergy in reply to Schwah

Brother Schwah post is solid, Zytiga is wonderful how it plugs the holes of Testosterone fuel to prostate cancer cells.

Chemo gets a bad rap, but it's effective, I've started with Lupron/Zometa (3 months interval) and daily Zytiga/Prednisone. After eleven months of this treatment protocol, added Taxotere (Docetaxel).

My fight to live, is combinational therapies, keep the cancer from mutating to resistance of treatments. Our disease is randomized in individual outcomes, so just keep the cancer on the fence for survival.

You are awesome, your Dad is lucky to have you....

Schwah
Schwah in reply to DarkEnergy

It’s me not my dad lol. Although my daughter is incredibly helpful. If you’re on zometa anyway you should add Celebrex. Double blind clinical studies showed it reduced mortality by over 20%. I’m going to add cholera vaccine too if I can get up to Canada to get it.

Schwah.

DarkEnergy
DarkEnergy in reply to Schwah

LOL, meant to reply to Karyn, but you knew that. Anyway, my Dana Farber doc is not so SOC type, we're paving my treatments to me...

WXYZ123
WXYZ123 in reply to DarkEnergy

Chris Sweeney ?

DarkEnergy
DarkEnergy in reply to WXYZ123

Good guess, but it's Mark Pomerantz, very kewl doc...

Juliane314
Juliane314 in reply to Schwah

Hi Schwah, can you kindly share the study where it showed the effectiveness of celebrex+ zometa? thanks!

cancervictim
cancervictim in reply to Schwah

Where do you get the cholera vaccine in Canada? It's not available in the US?

Kcski
Kcski in reply to DarkEnergy

Thank you so much for the encouragement! I really needed that:). Many times my efforts are met with resistance and complaint and I needed some positivity to keep my strength.

Like you, I believe Zytiga is important before castration resistance.

I also liked what you said about staying aggressive with the cancer to prevent it from mutating to resistance.

Thank you so much!

DarkEnergy
DarkEnergy in reply to Kcski

My favorite Dr Myers talk about combinational therapies:

grandroundsinurology.com/du...

Kcski
Kcski in reply to DarkEnergy

Thank you for sharing! I really like your information and approach! I have learned from you.

Kcski
Kcski in reply to Schwah

Well said!

Knowing that Zytiga extends life when used before castration resistance is critical knowledge!

I also think if he can keep the cancer off his bones he is much better off.

Many thanks/)

gregg57
gregg57 in reply to Kcski

It hasn't been proven when done after chemotherapy.

Tall_Allen
Tall_Allen in reply to gregg57

It has for mCRPC. Why do you think it would be different for mHSPC?

gregg57
gregg57 in reply to Tall_Allen

I don't know, I just went with the opinions of 3 doctors.

Hello Tall_Allen

Please explain for me these terms: ATD , mCRPC, mHSPC?

Thanks

George

ADT= androgen deprivation therapy

mCRPC= metastatic castration-resistant prostate cancer

mHSPC= metastatic hormone-sensitive prostate cancer

Thanks

Break60
Break60 in reply to NOCanceros

ATD is new to me. You mean ADT? Androgen Deprivation Therapy aka hormone therapy? MCRPC is metastatic castrates resistant prostate cancer whereas mhpca is metastatic hormone sensitive prostate cancer. Castrate resistant means PSI is rising in spite of Testosterone being at castrate level (<20) . Castrate de

cesces
cesces in reply to Kcski

Why not take a little vacation from treatment and see how the PSA responds?

Kcski
Kcski in reply to cesces

Because imho the vacation would be until the PSA started to rise, which would mean he would then be castration resistant. The Zytiga would be given at the mCRPC level and therefore would not be as effective.

Kcski
Kcski in reply to Kcski

Also ADT alone follows SOC practices, which we “know fail.” I want to get away from the standard 2 yearish time frame for survival and “put the cancer on the fence for survival” for 5, 10, 15 years.

quoting - Schwah and DarkEnergy

cesanon
cesanon in reply to Kcski

"which would mean he would then be castration resistant."

That is not true. castration resistance arises from, and is caused by, adrogen deprivation therapy. No ADT = No castration resistance.

Kcski
Kcski in reply to cesanon

His doc told him he would always be on ADT for the rest of his life.

I know the body is an amazing machine and it can take care of so many things on its own, but in this case my dad has a Gleason 9 PC and his body thinks the cancer cells are good cells. His body cannot recognize the cancer cells. I fear that all his chemotherapy work (takes everything you got) will go by the way side and the cancer will grow back and mutate further.

The more I think and read, the more I feel he needs to be aggressive and not give the cancer a minute to catch its breath.

cesanon
cesanon in reply to Kcski

"His doc told him he would always be on ADT for the rest of his life."

I think you need to get some more 2nd opinions. The above is not true. At some point he will become castration resistant, and the ADT will stop as it ceases producing any result.

I suspect that the Docs are giving you good advice, but you probably aren't interpreting it accurately.

If you do multiple second opinions you will get better at understanding what they are saying.

Doctor intuition isn't very useful with complex diseases. That is why they require that all treatments be supported with clinical studies, so they are based on fact not intuition.

Patient intuition is even worse. See Quakwatch.com

"The more I think and read, the more I feel he needs to be aggressive and not give the cancer a minute to catch its breath."

That may be. Yet many docs alternate between treatment and then rest. There is I believe data that supports this extends the time when the disease inevitably becomes castration resistant.

Also, do some research on bipolar testosterone therapy. That is about as non-intuitive as it comes.

While it may be difficult, I would avoid reliance on your own intuition. It is likely to lead you astray. I would instead talk to multiple docs and get practiced at asking good questions and fully understanding the answers.

And if you want good facts with which to start your journey. I would go here:

pcnrv.blogspot.com/2017/06/...

Print it out and read it several times. It will prepare you to ask good questions and understand that answers. Then go get a number of second opinions from several different major medical centers in different cities.

Kcski
Kcski in reply to cesanon

Thanks for your response.

I am fully aware that I did not go to medical school and am no where close to a doctor.

I also believe that doctors are over burdened and have their hands tied in political and financial capacities.

Imho trusting your intuition after intense research (conferences, online reading, doctors opinions) is your absolute best bet.

It is your life and the person most interested in saving it is yourself. Imo you have to be your best advocate.

Imo doctor’s are human beings. They are not gods. They have good and bad days, just like the rest of us. They have outside obligations and lead busy lives in our over stressed world.

Imho it is important to do your own research and make informed independent decisions.

cesanon
cesanon in reply to Kcski

Agreed.

It's definitely an imperfect world. Every Doc has their own strengths, weaknesses and issues.

The best solution I have found is to talk to several of them. I accidentally found a real good one, Dr. Snuffy Myers, until he retired. And even he had some weaknesses.

Kcski
Kcski in reply to cesanon

I feel the doctor was absolutely correct when saying, my father will be on ADT for the rest of his life.

He is mHSPC, Gleason 9, that has spread regionally.

Suppressing the cancer’s food via ADT is the bread and butter of stopping the cancer’s growth.

Castration resistance is NOT a good thing. It means the cancer has food to grow.

Obviously, at the point of resistance of the numerous ADT drugs and their counterparts he would have no options left in that department. That is a given. That is an undesirable.

My question is/was, which route will keep the ADT working the longest and put the cancer on the fence for survival.

Stopping ADT and providing fuel to the cancer is not productive IMHO.

I understand there are many differing opinions and will have to agree to disagree. Which is totally ok!

I still wish you the best! Thank you again for your information:)

cesanon
cesanon in reply to Kcski

"which route will keep the ADT working the longest and put the cancer on the fence for survival."

Bipolar Testosterone therapy has some evidence that it can reset castration resistance. Tall-Allen says that maybe Taxatere may also do so. I think there is one more, but I can't remember what it is (I think it has something to do with resetting ARv7)

I would encourage you to go read Tall Allen's article here, multiple times.

pcnrv.blogspot.com/2017/06/...

You won't find a better map to your options. You just won't. And you will not find a Doc with the time and patience to explain everything Tall Allen does in that article. Personally I think he is more knowledgeable than most Docs who don't have the time to follow the literature as closely as he seems to.

Personally I would also consider consider alternating ADT with ADT holidays. In your particular case, you can't assess where you are at until you suspend the ADT for a while to see what is happening with your PSA.

If it turns out your PSA is low and stable, your can forgo the ADT until it starts doubling again. If you can forgo the ADT for a while, it will take more calendar time to develop castrate resistance.

Exposure to ADT is what causes the castration resistance, much like exposure to antibiotics is what causes antibiotic resistance.

Kcski
Kcski in reply to cesanon

Thank you for the articles and ideas!

I will definitely find the time to read the Tall_Allen article several times (not easy reading)!;)

I agree with you about Tall_Allen! He is extremely knowledgable and explains thing in a clear concise way. I feel he is as knowledgable as a doctor, as well. And like you said, he fills in the holes I have from the doctor’s visits.

From our conversation, I realize I do not know enough about ADT vacation. I need to research and figure it out.

I guess my fear is the cancer gets an introduction to ADT, then ADT is pulled, but it studies what is left in the body and mutates to the point of resistance.

I understand your theory also. You take the ADT vacation and then the cancer cannot figure out how to mutate to resistance.

Wonder if there have been any studies? There are so many unexplored options that I get frustrated with SOC. Imho SOC is not good enough.

Lots to think about!

Thank you again and again.

Wishing you health and remission,

Karyn

cesanon
cesanon in reply to Kcski

There is limited information on Castration resistance.

Go online and study antibiotic resistance. They both work EXACTLY the same way. There is a lot of good information online about antibiotic resistance.

Nonstop ADT is a bit old school I believe, but both approaches are accepted standards of care these days.

Kcski
Kcski in reply to Tall_Allen

Thank you for this very important information!

Schwah
Schwah in reply to Kcski

Hasn’t been proven is correct. But what has been proven is with SOC it always comes back. So???

Schwah

Kcski
Kcski in reply to Schwah

I completely agree! SOC buys you a couple of years and then it is done (I think we can do better than this). I feel the more you challenge the cancer and keep hitting it while it is down, the longer you live. The comments on this forum are reinforcing my beliefs. I keep thinking of Dr. Kwon from Mayo saying, “why not challenge this disease and see if we can knock it out for good (mHSPC or mCRPC)!”

Thank you everyone for sharing! Knowledge is power.

Kcski
Kcski in reply to Tall_Allen

Hi Tall_Allen,

I had a gentleman private message me about where he can find information about how Zytiga has demonstrated ability to extend life in hormone- responsive PC. Can you direct us to an article?

Thanks! I have read several of your posts in the forum and you are extremely resourceful.

Thank you for all of your information!

Tall_Allen
Tall_Allen in reply to Kcski

This article discusses it and gives links to the relevant studies:

pcnrv.blogspot.com/2017/06/...

cesanon
cesanon in reply to Tall_Allen

Really Really Nice Article by Tall_Allen!!!!!!

If you are interested in this discussion thread, you should follow the link and read it.

It very very comprehensively and exhaustively covers the subject matter of this entire discussion.

I will repeat the link below

pcnrv.blogspot.com/2017/06/...

You say he doesn't have bone mets then go on to say it spread to pelvis and lymph nodes?

I went with zytiga at this stage and am still relatively well 9 months on. Im 61.

Kcski
Kcski in reply to Colinmcrea

He has NO bone Mets.

Sorry for the confusion.

He has Mets on some pelvic lymph nodes and gut region, but not on bones. We need to ask the doctor for more clarification about where exactly the gut Mets are etc.

Just a suggestion: Probably wouldn't hurt to try fenbendazole (Panacur) - it works the same way as the taxane chemo drugs without deleterious side effects, and is generally well-tolerated. Cheap too on Amazon. It's an anti-parasite drug - Panacur is for de-worming dogs. Johns Hopkins researchers about 10+ years ago realized that the lab mice they were trying to give cancer to for a study weren't getting sick because they were also being given fenbendazole for pinworms (pinworms are common in lab animals) - it was killing pinworms AND the cancer, kind of screwing up their study, but giving them an insight into a new use for an old drug.

It's easy to take - I just dump the packet of granules into my mouth and wash it down with juice. No taste, no digestive upset for me, no effect on my liver - it's been pretty well studied and found to be safe and remarkably free of bad side effects. I'm the same age as your dad, I began taking it while recovering from hip replacement at the same time my PSA was rising quickly. Since I started taking it in June, my PSA has been dropping steadily - I hope it continues, I get the latest results next week.

I'd be sure to ask the doctors treating him if it would interfere in any way with any other treatment he's getting, but I don't think it would. Not a big risk to try, with a possible benefit in keeping the cancer in check if not sending it into remission. From what I understand, it's not the kind of drug that might cause PSA to drop without reducing cancer, thus masking metastases.

Note: though I was originally diagnosed 11 years ago with Gleason 8, my PSA has never exceeded 8.8, and I've been incredibly lucky to never have had metastases, so I won't presume to compare my situation with your dad's or anyone else's on this forum, but I do know that fenben is a well-tolerated drug that could be a supportive addition to his regular treatment. If it's going to work, it usually shows fairly soon after taking it, like within weeks.

For a lot of info and anecdotes about its use, read Joe Tippens's blog; he had/has small cell lung cancer and was given 3 months to live after trying every treatment possible - says scans lit his body up like a Christmas tree. That was 3+ years ago and he's doing well. If nothing else it's inspiring and full of hope: mycancerstory.rocks/single-...

Kcski
Kcski in reply to kapakahi

Thanks Kapakahi! Very interesting and a low risk to try. It might be worth a shot. It sounds like some people have a type of PC cell that is really hurt by the drug. These types of drugs and the openness to try them are outside SOC and if someone has the right PC cell that has a sensitivity, imho they can be lucky enough to go into remission. Thank you so much for sharing and including all the relevant details and full story. I will talk to my dad about it. He is reading the thread too.

kapakahi
kapakahi in reply to Kcski

Well, cold water on me: my latest PSA showed the opposite of what I was hoping for - instead of continuing to drop, it rose from 1.5 to 1.996 - essentially 2.0. Of course I don't know why - it isn't a huge increase, but it is 25% in one month. Dang! Not sure why or what it means - it does coincide with my adding like 4 more anti-cancer supplements about two weeks ago. I wonder if those could be counteracting fenben. At this point, I think I'll continue the fenben and stop the others.

OTOH, after reading what Tall Allen says about vitamin E causing cancer - specifically alpha-tocopherol in the dosage often found in vitamin supplements: 400 IU, which is what my daily vitamin supplement has - I think I'll add gamma-tocopherol, which lowers the alpha form and is thought to be protective. Maybe it won't interfere with fenben, and if it lowers alpha-E, maybe it'll help.

It's hard to know what to do. I don't mean to discourage you, but since I talk about fenben quite a lot, I owe it to everybody here to keep them apprised of how it's going for me. So for today anyway, how it's going is Dang!

kapakahi
kapakahi in reply to kapakahi

I miscalculated - 1.5 to 2.0 is a 33% hike, not 25%. (You should see me try to measure in my woodworking.)

Kcski
Kcski in reply to kapakahi

Shoot! That sucks to hear.

I like how you are staying calm and on top of the situation, though. It is smart to monitor the PSA closely.

You are aware that the new supplements may be an issue or the vitamin E additive.

I understand the fenben has really helped you, so you want to stick with it until proven otherwise.

Does cancer have mutation resistance to fenben? There are so few alternative studies available.

This board is so great because you can hear about alternative treatments and how they are working in real time.

Please keep us posted. Thank you for sharing Fenben and keeping us up to date on the whole situation.

I wish you a sharp PSA drop in the very near future!!!!!

Karyn

PSMA testing ..... possible radiation treatment ..... possible Lu-177 treatment PSA of 5 would make him eligible for various USA PSMA studies (see page 34):

practicalradonc.org/article...

Where is your Dad located? Treatment center(s)? Doctor's name(s)? All info is voluntary but it helps us help you and helps us too. BTW are you in the medical field? Thanks...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/15/2019 3:16 PM DST

Kcski
Kcski in reply to j-o-h-n

He lives in Omaha, NE. He is being treated by Dr. Luke Nordquist at the Urology Center. I am not in the medical field. For the last six months, I have done a fair amount of reading about Prostate Cancer, though.

I really want my dad to have the best chance to live a long time and I want to avoid miss steps (I know they will cost him precious time).

I am stressed about this decision. I feel it is a big one.

I have come to realize that I agree with some members of the forum on NOT following SOC because “we know SOC fails”. I agree that we have to “keep the cancer on the fence fighting for survival”. I think Dr Kwon is smart when he says we need to challenge this disease (be aggressive) and see if we can knock it out (or into remission).

j-o-h-n
j-o-h-n in reply to Kcski

Hello Karyn,

Thank you for your reply.... Yes... it is a disease that we must fight with every ounce of the weapons at our disposal (present and future). Keep on fighting the bastards....and your Dad will be around for a very very long time..Regards to Him and to You.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/16/2019 12:21 AM DST

Hi Karyn

My husband had a similar diagnosis, Feb 2017, PSA 275, gleason 8, There were several enlarged lymph nodes in the iliac chain, obturator, and largest in the para-aortic measuring 3.3 cm. Age 70. He has NO bone mets.

He was immediately put on ADT (Eligard) and was given radiation to the pelvic area, but we aren't sure if the radiation was as high as the para-aortic lymph nodes which are near the naval area and are considered distant metastasis. His PSA went to .008 and has stayed there. We are not sure what the next treatment will be but see the oncologist in two weeks. His last ADT shot was in November 2018.

I have been reading about lymph node only metastasis and came across an article that suggests radiating the para aorta lymph node in order to prevent or postpone castration resistance and prevent further metastsis. It also recommends radiation to the pelvic area.

Its difficult reading, you can get the gist of the information and perhaps something you and your Dad can mention to the doctor. ADT and radiation seem to be the SOC for lymph node mets here in Canada.

ncbi.nlm.nih.gov/pubmed/305...

Best of luck to you and your Dad.

Catherine

Thank you Catherine!

I find it very interesting and smart that in Canada they radiate spots (Mets) in the pelvic lymph node region.

Dr Kwon (PC specialist at Mayo Clinic) has a YouTube video presentation where he talks about radiating spots once mHSPC has been shrunk by a treatment strategy (chemo, ADT, Zytiga etc). He talks about going after the PC cancer to test the disease and see what is possible ...remission. This makes sense to me and I like it. Like mentioned above, we know US SOC fails.

My dad has been on ADT (also Eligard) since diagnosis. He was told he would always be on ADT going forward. We just have to decide what he will pair the ADT with...big decision.

Thank you for sharing the article. It sounds meaningful. After all, the name of the game is castration resistance avoidance. I will take a look tomorrow, when I have the stamina and mind set for heavy reading😁. I will talk with my dad about it, too.

Please keep me informed as to your next step. We are in similar places. I do feel this decision is important. I want us both to make the best step.

I wish you and your husband so much luck and many many more happy years!

Karyn

Niclosamid, a tapeworm treatment drug,,,trial at UC Davis,,,and Indomethacin, a gout treatment drug are reputed to do a reset of resistance to 2nd generation AR Inhibitor drugs such as Zytiga or Xtandi. Google each of them with prostate cancer in search argument.

There is another drug that has recently completed phase 2(as I recall) trial to cause a possible reset that may be promising.

Kcski
Kcski in reply to Sxrxrnr1

Thank you for the information! I always like to hear about new possibilities.

Have you tried Immunotherapy (Provenge)? You should be able to get it if you are mCRPC. I feel like it can help the other drugs and your body fight the cancer. That is what I have read

Sxrxrnr1
Sxrxrnr1 in reply to Kcski

I have not tried. I consulted with 3 highly respected MO’s, none of whom would recommend it. But then others recommend it highly.

Oddly enough since having been diagnosed myself some 14 plus years ago, the very first 3 men that I had personally known that passed away from this disease,,all had been undergone Provenge therapy.

Not to suggest in any way that this hastened their demise,,,but always felt was a bit eerie.

Kcski
Kcski in reply to Sxrxrnr1

Wow! That is very eerie and probably more than a coincidence. Thank you for sharing. That alters my feelings on Provenge.

It does seem that an Immunotherapy has to be paired with other drugs to show any results.

Thx

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