ADT or no ADT: At 6 months post RP with... - Advanced Prostate...

Advanced Prostate Cancer
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ADT or no ADT

Jmr11820
Jmr11820

At 6 months post RP with a PSA is .03, my urologist refereed me to RO. Urologist wants to do RT, especially considering high DECIPHER, but does not favor ADT with it. Had my RO appt today and he said the same, given my low PSA at this point in my disease. I’m doing a second opinion online tomorrow with a Cleveland Clinic RO who comes highly recommended. My question is regarding ART/eSRT with no ADT for Pt3a and high Decipher disease. Appreciate any advice or experience.

83 Replies
oldestnewest

Read this, especially the section titled High Risk/Decipher:

pcnrv.blogspot.com/2019/09/...

Will you be talking to Rahul Tendulkar at Cleveland Clinic? He's excellent.

Just curious, did Decipher give you a Grid score giving the likelihood that SRT will be successful.

Jmr11820
Jmr11820
in reply to Tall_Allen

Dr Mian at CC. Radiation resin GRID is low at only 18, ADT is 23, and Docetaxel is 78.

Jmr11820
Jmr11820
in reply to Jmr11820

Response, not resin

Jmr11820
Jmr11820
in reply to Jmr11820

Question is actually about ADT with radiation.

Tall_Allen
Tall_Allen
in reply to Jmr11820

Yes, I know - did you read the article?

Jmr11820
Jmr11820
in reply to Tall_Allen

I did. I see the low PSA reference with but have also seen DECIPHER posts regarding phase 3 RTOG 9601(think that’s right) suggesting DECIPHER high risk patients with better outcomes if RT is accompanied with 24 months bicalutamide. Seems like overkill at this point. In my head DECIPHER is a game changer though. All my docs are very cautious about the GRID.

Tall_Allen
Tall_Allen
in reply to Jmr11820

RTOG 9601 was before Decipher, so it can't address it at all. Here is the Spratt study setting the cutoff at 0.6, but that is based on mostly originally intermediate risk patients and doesn't include Decipher:

redjournal.org/article/S036...

BTW- I agree with your doctors about GRID. It's never been prospectively validated. I would never let it stand in the way of treatment.

Jmr11820
Jmr11820
in reply to Tall_Allen

Thank you. In your head, do you think RT and ADT is reasonable with PSA .03? Realize it’s only your opinion.

Tall_Allen
Tall_Allen
in reply to Jmr11820

I would say no if you didn't have the Decipher data. I'd be interested to hear your RO at CC opinion

In fact, without Decipher, there would be no reason to have SRT at all if you don't meet the RADICALS criteria.

Jmr11820
Jmr11820
in reply to Tall_Allen

Thanks, I’ll know tomorrow. Don’t relish the idea of ADT, if I can put it off safely. Appreciate the information.

fluffyfur
fluffyfur
in reply to Jmr11820

Was your consult with Dr. Mian via telephone? Trying to get a second opinion as well and with COVID travel seems unlikely.

Jmr11820
Jmr11820
in reply to fluffyfur

Had an option for telemedicine or phone call. Did it through the Myconsult program at Cleveland Clinic.

fluffyfur
fluffyfur
in reply to Jmr11820

I just clicked on that and so that's $800? :(

Jmr11820
Jmr11820
in reply to fluffyfur

Yes

An RO will favor radiation.

An MO will favor ADT.

Given that PC is intrinsically systemic in nature (according to many), I would favor systemic therapy over localized therapy, absent mets (or other symptoms) that might really need nuking. That could mean ADT, or other hormone monotherapies (estrogen or antiandrogen).

My readings and interpretations of the literature for asymptomatic PC suggest early hormonal therapy (or NOTHING?) over radiation. Opinion only.

Jmr11820
Jmr11820
in reply to noahware

Thanks for that. Decipher is telling me to move now than later with treaty, likely RT, but I do wonder if that’s even the right road.

Gidday Jmr11820

You and I have somewhat similar stats - although I am pT3b and my Decipher was 0.91... and that little b is something I would really rather have avoided!! I have spent a year reading EVERYTHING about Decipher and even corresponded with the leading lights doing the R&D in the US, to try and figure out the way ahead.

Looking back at your posts, you’ve had lots of good advice, but there are a couple of things where I respectfully disagree. Firstly, I am a buyer of PSADT measurements with micro-PSA tests. There are a couple of great Finnish theses and papers looking at the crossover from micro-PSA to the + 0.1 region, and it’s pretty clear that a short PSADT in the micro domain is usually not good news.

That said, you just don’t have anywhere near enough data to start drawing conclusions yet. I took monthly measurements and tracked my PSA, which only became detectable at 5 months post-RRP, all the way up to 0.117 before having eSRT + ADT. My PSADT was around 4 months, and that worried me more than the 0.91 Decipher!

Secondly, I am a believer in the GRID measurement of radiation susceptibility, having read every publication I can find dealing with it. I hear all the criticism about it being “unproven”, but if you sit and think about the trial that would be required in order to prove it, it becomes clear that it will never be done. Of course, this conclusion was easier for me to reach because my PORTOS score was 87%... though I needed some good news to offset Proliferation scores in the high 90’s😉!!

As to ADT... I did eight months of Xytiga and 12 months of Goserelin alongside the eSRT, after reading and then re-reading every paper on the topic. I corresponded with the folks re-analysing the RTOG9601 data and they felt this was about right given the high Decipher, despite my low PSA... but frankly, there’s no doubting that it’s all guess work at the moment. I have some quite young children and decided the ADT was worth it - but could only stick the Zytiga for 8 months, even then.

For what it’s worth, my reading of the R&D is that in a few years, men with high risk PCa will have ADT pre- rather than post-RRP and it will be a whole new ball game - but that doesn’t help you and me navigate through today, does it!

You have some time.... get some more frequent PSA measurements and work out your PSADT, and go and talk to the best people you can access about ADT duration alongside eSRT, because it seems fairly likely that you’re heading that way and have an ADT decision to make. I haven’t seen any data that indicates getting eSRT at 0.05 is better than 0.1, so I honestly believe that you have time to make a

considered decision.

Finally, I would try to get access to a really skilled team doing PSMA -PET. Chances are it won’t show anything at the ca. 0.1 PSA you can afford to get to before eSRT.... but it does in a small number of cases and it should be standard practice anyway.

All of this is just my view based on my reading and discussions, but I hope it helps...

Stuart

Jmr11820
Jmr11820
in reply to Blackpatch

First I've heard anything about PSADT at low levels. I went from .01 to .03 in 3 months and you're saying that might be predictive at those levels? As for the GRID, agreed it's hard to ignore it. What's odd is there is a wide range of values in, for instance, radiation response, that they say are within a normal range and "favorable". These things are on the question list for my radiation consult later today. How are you doing.... would you change any of your treatments looking back?

I absolutely would not do anything yet with a PSA .03. It’s not considered recurrence officially until 0.2. I have many patients with psa 0.1 -0.15 after RALP just being monitored for years. Radiation right after surgery very high risk of chronic incontinence and impotence. Radiation blindly for 30% to maybe 50% likelihood of cure. I’d monitor until above 0.2 get a high sensitive PET C11 choline or by summer FDA approved GA68 PSMA PET and localize the disease. If outside pelvis RT would have been waste of time if in pelvis then go for RT but with more confidence and if limited to pelvis as an oligometastatic site than can freeze it as outpatient for cure and avoid radiation. But again wouldnt do anything until psa above 0.2!

Jmr11820
Jmr11820
in reply to Drgucancer

Thank you. I feel compelled to do something, based on DECIPER. Your advice, however, seems sound. Are you a physician?

Drgucancer
Drgucancer
in reply to Jmr11820

Yes GU medical oncologist

Occasionally read these and once in great while comment. Always impressed by how knowledgeable the patients on here are about prostate cancer.

Jmr11820
Jmr11820
in reply to Drgucancer

Thank you. Just sent you a message.

Steve507
Steve507
in reply to Drgucancer

Hi Dr.

Please indulge me.

61 year old healthy male who had T1c-T2 PCa, G3+4, Robotic RP March 8th, 2019.

Post RP Pathology: Specimen was 90% G3, 10% G4. One posterior Focal Margin 0.4 mm.

RP March 8th 2019---Post RP, at 5 weeks PSA 0.01 until Feb 1st 2020 where it doubled to 0.02. Latest Result April 29th, 2020, still 0.02-same lab.

Would my PSAs ever go back to 0.01 all else equal, assay, etc.

Thanks

Drgucancer
Drgucancer
in reply to Steve507

It doesnt need to necessarily go back to 0.01 to be considered cured. Around the world we use above 0.2 as recurrence as normal tissue could be residual. I dont want to make it seem black and white some depends on ur urine and sexual function post surgery and how strong ur desire to maintain that control. Sometimes the side effects life long are worse than the disease. Better imaging is rapidly becoming available ( typical psa needs to be above 0.5) and alternatives to blind pelvic radiation. In general i would likely recommend just watching ur psa also.radiation today is better than it was a few years ago and continues to improve maybe not rush

Steve507
Steve507
in reply to Drgucancer

What does RALP mean?

Thanks

Drgucancer
Drgucancer
in reply to Steve507

Robotic Prostatectomy

There have been studies out of Hopkins that actually show there is a better outcome if treated at the lowest possible PSA. Treating at any detectable level. The 0.2 is an older data point. Logically it does make sense. Treating at a lower level of tumor volume should result in better outcomes. Obviously one would need a trend of PSA date points to make an educated choice. Some men do indeed bounce around at a very low level for years.

Jmr11820
Jmr11820
in reply to SooHwa99

Thanks, good to hear from you. You’re not making a case or not for ADT with RT, but rather the timing for any therapy, right?

SooHwa99
SooHwa99
in reply to Jmr11820

Obviously that is a separate discussion. I am making the argument for treating at a lower level of PSA/disease volume. This is what the Hopkins study has shown. As it relates to ADT the same study also noted that combination therapy produced better outcomes than RT alone. I believe this is becoming a standard now.

I've read these studies too.

Steve507
Steve507
in reply to SooHwa99

Can you refer me to these studies, plz.

Drgucancer
Drgucancer
in reply to SooHwa99

Agree if cure is your only priority. I just have too many men wearing depends or chronic urine strictures or rectal bleeding from radiation after surgery.....many still dealing with the disease because the radiation didnt cure it. Dont get me wrong Radiation has its place. I refer many patients to radiation. its just a discussion with the patient that doesnt happen enough. Prior to fefinitive therapies ( RP or RT) all thats on the minds of patients is the cancer the cancer the cancer. After when there are lasting side effects its like they forget about the cancer its the side effects the side effects the side effects. Just food for thought.

Ok back to patients nice chatting

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

Is there a doctor in the house? I thought so....cause as soon as he came into the exam room and saw me, he said "OK NEXT"....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/01/2020 5:37 PM DST

Steve507
Steve507
in reply to SooHwa99

You say, "some men do indeed bounce around at a very low level for years." Do these men stay free of metastatic cancer while they bounce around? Is there an updated PSA point where additional treatment is highly recommended after an RP? Old info and new studies?

What is this decipher?

My husband is t3b. Trying to decide on next steps also. One doctor waits for PSA to rise, the other said hit it with everything asap. the studies I have read say the same thing depending on aggressiveness of cancer and where it is.

It is a geonomic test that uses tissue from the prostatectomy to gauge the aggressiveness of the disease.

Steve507
Steve507
in reply to Jmr11820

I still have my specimen. Can I send it onto a lab. My post RP pathology was 90%G3 and 10% G4.

What is your husband's PSA. I'm assuming this is post RP? Did his PSA get to .01?

We are only 4 weeks post rp. PSA next week.

What were his PSA and Gleason scores at time of surgery?

Is he doing ok now?

19.8. Gleason 9. Stage t3b.

He feels fine now.

I wish you guys the best. Waiting on the first PSA post surgery was stressful for me. God Bless!

Jmr11820
Jmr11820
in reply to Steve507

Same to you!

Oh. Thank you. I'm sure they didn't do that!

.03 PSA is almost undetectable, my Drs in Minnesota, Mayo Clinic, would not recommend, at for me, ant radiation or drugs until PSA of .2. That is 700% higher than you are now. Get a second opinion perhaps. And where will they radiate? At .03 there is no known way to scan to find where the cancer is now.

Jmr11820
Jmr11820
in reply to dlarsonmn

So, no treatment at all until that point, radiation or otherwise, correct? What is the nature of your disease... high risk?

I hope that I am not wasting space here but just received my annual PSA result and happy to say that after being diagnosed 17 years ago it is <0.01 today. At diagnosis my PSA was about 40 and Gleason was 3+4. I went through RP, radiation (Tomotherapy), and 24 months of ADT. Like you, after 6 months of RP my PSA started to rise. I started working with Dr. Stephen Strum who I can't say enough good things about. We sent my tissue to Germany (Dr. Bonkhoff) and it was determined there was spread at the time of RP. Problem was we didn't know where the "new" PSA was coming from. Prostate bed or elsewhere? Dr. Strum suggested that I take a trip to Nijmegen, Netherlands to visit with Dr. Jelle Barentsz who performed his well known MRI diagnostic and determined the cancer had not spread to the lymph system. That allowed us to make an educated guess that the PSA was coming from the prostate bed which meant radiation might work. I was an early investor in Tomotherapy and sat on the company's board and fortunately we had an installation nearby. So I went through radiation and also underwent ADT for 24 months...ugh, the worst part about my journey. At the end of the ADT, my PSA had dropped to <0.01. It stayed that way until about 2010 at which time it started to rise. I decided to hit it hard with diet and lifestyle and not go through ADT again. By the way, I'm leaving out a lot but most of that was based on my desperation to kill the beast. I'm happy to share details but it's been a long time and the good thing is that I no longer worry about it on a daily basis. And by the way, I've had no serious side effects from any of the therapy other than the bad memories of going through ADT. Still, it was worth it. And the literature and approaches have probably changed but I hope that my story helps.

Jmr11820
Jmr11820
in reply to Gary64

A story like that is anything but wasted space. Thanks for sharing that. Heartfelt congratulations!

Steve507
Steve507
in reply to Gary64

Sharing your story builds helps build my confidence. How old were you when you had your RP? Can you share more details from diagnosis to the point your PSA began to rise and the choices before you?

That's a lot I know.

Thanks

Steve507
Steve507
in reply to Steve507

And congratulations!

Steve507
Steve507
in reply to Steve507

So you were quite privileged from the sound of things to sit on the board and fly the world to get cutting edge opinions?

Jmr11820
Jmr11820
in reply to Steve507

Not me. Not sure who you’re asking.

Gary64
Gary64
in reply to Steve507

Steve, I'm a venture capitalist and had an investment in Tomo which was just a fortunate coincidence. My trip to Nimegen doubled as a nice vacation for my wife and me. The flight and hotel weren't very expensive and I made a donation to the Nimegen Medical Center. I don't think that was required but it was well worth it. The data that I received from that trip allowed me to pursue a strategy based on objective evidence and not a hunch.

Gary64
Gary64
in reply to Steve507

Steve, see my post from a few minutes ago. I think I have given just about all of the information that I have. I didn't include the names of all of the doctors because I don't think that is helpful. My primary doctor was Stephen Strum who was fabulous. I will never take what he recommended for granted. Hope all of this is helpful.

Gary64
Gary64
in reply to Gary64

I'm happy to help whoever I can but, as I said, realize that I went through this 15+ years ago. I know how important it is to understand other folks' experience so I'll give you as much information as I can here.

First PSA in my life age 51 (3/27/03) 32.6. Gland volume 30-40cc per DRE, GS 3,4 GG 4 per Bostwich, no core or tissue %. CS T1c. CT and bone scan no evidence of distant PC. Dx PC 4/9/03.

Rx1: RP 5/6/03 with nerve sparing. Bostwick review (10/3) L biopsies inv 40% of specismen GS 3,4 (70/30). R lobe biospies inv 5%. Surgical margins+, PNI+, EPE+, Vascular invasion+. seminal vesicles-, pelvic nodes, apex bladder base normal. No ploidy done. GS 3,4 (70/30). Pathologic stage T3aNoMo. Bonkoff review 8/26/04, reveals small clusters of PC cells in capsular sinus of 1/10 nodes. Lesion measuring 4mm. no evidence of tumor penetrating lymph node tissue. All other nodes negative. GS 3,4 confirmed. ProstaScint scan showed vague activity (10/21/03). Post RP PSA's .1 (8/14/03, 0.07 (9/5/03), .062 (10/8/03), 0.093 (11/17/03), .11 (12/16/03). Undertook a significant change personally in diet. Participated in a study (Saxe) that addressed impact of diet and lifestyle on prostate cancer recurrence.

Rx2: ADT3 (CAL) for 24 months (1/19/04).Casodex + Avodart. Lupron added 2/26/04. QCT w/ osteopenia w T score -2.05 (1/20/04). Undectable PSA @0.02 on 2/26/04) or 1 month post initiation of ADT3.

Rx3: Actonel (2/29/04) + calcium glutarate & bone assure. PSA 0.004 (4/15/04), PSA 0.00 (5/27/04) at about 3 months. All neuroendocrine markers normal 5/27/04 but serum T 60. UD-PSA on 6/25/04. Change from Casodex to Flutamide 7/04 to try to get T down. PSA <0.01 (8/3/04) = UD-PSA x 5+ months. Review of Bonkoff (8/26/04) indicates nodal involvement of L pelvic node. PSA <0.01 (9/13/04). UD-PSA x 8 mos but T 46. MR lymphography. BoneAssure and Calcitriol added along the way. I put together a significant cocktail of supplements that I'm happy to share by separate entry. MR lymphgraphy in Nijmegen, Netherlands (11/2/04) with no evidence of nodal metastases. PSA (1/4/05) <0.01 w T 36.

Rx4: Tomotherapy (5/3/05-6/28/05). to prostate bed and regional nodes. PSA 0.01 w T45 (8/10/05). Last Lupron (8/29/05). Effect wears off 11/25/05.

PSA <0.01 T 33 (9/30/05) and remains <0.01 through 4/13/11. PSA 0.02 (4/13/11). Decide to suspend PSA tests for a while. Just needed a break.

Today: PSA <0.01 (4/16/20). 17 years following diagnosis.

As I said, I'm very happy to share whatever I can to help. Above is about as much detail as I have other than the list of supplements. As I said, along the way, I took control of my situation, sought reviews from various doctors and experts (you'd be surprised at how willing the experts are to help). Changed diet (although I have eaten healthy diets for years) to strong veggie diet, learned to meditate, learned Tai Chi, and had lots of great family and friends who helped me. As of recently I took no medications (age 68) but have just started on BP medication.

Steve507
Steve507
in reply to Gary64

Thanks for the detailed information and advice on being proactive.

I live and work in Doha. Cornell University is publishing my prostate cancer story in their annual Qatar Cancer Society Issue. Cornell has a medical school of sorts here.

I had my RP done here by Dr Shah, chief of robotic surgery from Henry Ford. The Qatari Medical Corporation paid for the entire process. They look after people's health here.

Gary64
Gary64
in reply to Steve507

Best wishes to you!

Steve507
Steve507
in reply to Gary64

Save for a bit of chicken, I've given up meat but still cheese and yogurt. Exercise daily and intensely; I meditate daily and enjoy my work as an English professor. I feel great and suffer no side effects. Quite fortunate and grateful.

My question: What role does diet and lifestyle play in your long term recovery?

Gary64
Gary64
in reply to Steve507

Not sure, honestly. I guess in my heart I don't discount anything that I did, whether traditional medicine, alternative medicine, positive outlook and even prayer groups that friends formed even though I'm not religious. Someday, if we talk by phone or Zoom I will tell you stories of some of the wacky things that I did. Still, I think that I sought the best doctors that I could find and then figured out a way to tap into their knowledge. At the very top of my list is Stephen Strum. The strategy that we collectively put in place somehow worked.

Whoops! Sorry

We are in a similar situation and I was about to post a question when I saw your post. 1 yr post RP with a PSA now of .2 (originally was 0.0 post RP). Margins positive and ECE present. We are patients at MD Anderson and our RO wants to do radiation to the prostate bed only, with no ADT. Wondering if we are making the right choice? 37 nodes were removed during RP and were all negative. Totally lost at this point. Any feedback from anyone?

Gary64
Gary64
in reply to fluffyfur

See my post above. Hope it's helpful. I don't know how one can determine to do radiation if you don't know where the PC is. My trip to the Netherlands was the deciding factor for me. It allowed me to make a decision that the PC was not showing up as distand and therefore it was probably still in the prostate bed. At the time that I did RT, the studies indicated that there was synergy between RT and ADT. ADT was really tough from an emotional / intellectual perspective. I got to a point where I had a hard time doing simple math in my head. But in hindsight I don't regret doing it.

fluffyfur
fluffyfur
in reply to Gary64

Well we know where at least some of the cancer is, because he had positive margins after his surgery. Meaning the surgeon left cancer behind in the prostate bed.

Steve507
Steve507
in reply to fluffyfur

.2 or 0.02?

fluffyfur
fluffyfur
in reply to Steve507

.2

Jmr11820
Jmr11820
in reply to fluffyfur

Although no scans will pick up any disease at such low psa level, .03 for me, my RO very methodically explained how my relatively low PSA pre-op, coupled with EPE and PM ......given all that and PSA at one month post-op of.01 and six months .03 makes it very likely the rise is because of local disease at the margin. Maybe more predictive than if I had no disease at the margin. Also explained that the ADT, because it does “light up” the RT, would be more than he wanted around the lymph nodes. He’s doing my lymph nodes because my surgeon did not. He said all this much more eloquently than I. An acquaintance of mine went to Anderson for guidance and had treatment here. He had 6 months ADT with RT, but he had 4+4 disease. Best to you, keep us posted.

fluffyfur
fluffyfur
in reply to Jmr11820

The RO at Anderson said that some of the newer scans (at that low level of PSA) have been frustrating for them and sent them down a long rabbit hole/time suck and he advised against getting one at this time. Thanks so much for your post. Best to you hun.

I spoke with my RO, here in Oklahoma, a few days ago who recommended only prostate bed an lymph nodes with no ADT. Had consult with Cleveland Clinic RO who recommended the same. He was very reassuring. My disease is 4+3, and decipher high risk. You?

Steve507
Steve507
in reply to Jmr11820

I am 0.02, technically undetectable but I stressed a lot out from moment of diagnosis so I understand your worries. A buddy of mine was .2 five weeks after surgery. His scans were clear. They did ADT right away and radiation 4 months later. He's stable at 0.02 since November 2019. Hang in there man!

Gary64
Gary64
in reply to Jmr11820

Jmr, maybe things have changed. When I was going through it, the studies showed that RT and ADT were synergistic. In my case we determined to hit it hard up front which is why we used ADT in addition to RT. A lot of doctors suggest holding off on ADT until you are have exhausted other things. I can understand that. I’m not a doctor but ADT does a number on you. It stops after you stop using it usually but during the therapy it can be depressing and nuts. I don’t know if Dr. Strum takes new patients anymore but he is the best in the world as far as I’m concerned. I don’t think he accepts insurance so it can be expensive. I’d advise you to put the best team together that you can find and let them help you. I had probably 15-20 doctors working with me at various times. Best wishes in whatever path you decide is best.

Jmr11820
Jmr11820
in reply to Gary64

Thanks. Your comments are enlightening and inspiring.

There are no silver bullets with prostate cancer. It’s a lifetime war. The more battles we fight, the more we win. The more battles we win, the better the odds of dying with it instead of dying of it. Even if we lose a battle, slowing the enemy helps.

I’m not a doctor, but that’s the conclusion I’ve reach 14 years into the war.

Steve507
Steve507
in reply to ron_bucher

Thanks for your story! It gives folks hope to hear from long term survivors.

Gary64
Gary64
in reply to ron_bucher

Ron, fingers crossed but I think I have won that war. Never thought I would say it and I know it’s always possible that it will come back but at this point I’m not going to worry about my next PSA test. Now if I can just get my hypertension under control :-)

Jmr11820
Jmr11820
in reply to ron_bucher

After RP and IMRT, did you eve4 recover any sexual function? My RO, did not paint a rosy picture in that regard. I understand if you’d rather not answer the question.

ron_bucher
ron_bucher
in reply to Jmr11820

I have good erections with sildenafil (viagra). The penis is like a muscle where you need to use it to avoiding losing it.

Gary64
Gary64
in reply to Jmr11820

In my case some but not at all the same. However, I think it was the RP that did the damage, not the radiation or ADT. I’ve had best results with the shots but it’s a bit strange. I have one friend who had some kind of pump inserted and he swore by it. I’ve not explored that.

Steve507
Steve507
in reply to Gary64

My only treatment has been Robotic RP and never any ED issue or urinary for that matter. Grateful

I’m just beginning and I hear you.

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