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Age 55 w/ Gleason score of 9 - Latest Update

dwhite1031
Posts: 26
Joined: Jul 2012

Hello all,

I'm 55 years old and received my diagnosis of prostate cancer on July the 13th (Friday). It's just a date, but how ironic! Let me give a little background that has led me to where I am today.

In April of 2011, my gastro Doctor diagnosed me with a condition known as GAVE (gastric antral vascular ectasia) aka "watermelon stomach" after being transported to the ER. This is where the vessels of the stomach come to the surface and look like stripes on a watermelon and bleed. I was severely anemic, received a blood transfusion (2 units of PRBC) and was referred to Texas Oncology to see a Hematologist/Oncologist. I received an iron infusion and have been to Methodist hospital in Dallas twice in the past year for argon/laser cauterization procedures to stop the bleeding and have shown no signs of recurrance. However, my blood "numbers" continue to drop and my immune system is not up to par.

I had a PSA of 4.2 July of 2011 and had prostate biopsies done which came back negative. But I developed sepsis within 24 hours of the biopsies and spent 7 days in ICU. What an adventure that was!

This past May, my PSA was 8 and my Urologist prescribed 3 weeks of Cipro to see if it was due to an infection of the prostate as my DRE didn't show any significant enlargment or sign of a tumor. After a second PSA coming back now at 9.2 in that 3 week period % free PSA of 4, biopsies were again taken.

And on Friday the 13th of July, we were given the diagnosis of prostate cancer, Gleason score of 9. My Urologist feels it's aggressive due to the high Gleason and that I went from nothing a year ago to this now.

I had a CT without and with contrasts and a bone scan last Wednesday, and we now await the results of those. I see my Urologist on July 31st, next Tuesday.

He discussed all of the treatment options that are available for all stages of prostate cancer and said we'd look at developing a treatment plan after these recent tests and our next visit. One thing that we are grateful for is he is a good man and doctor, with a gentle manner. He talked "TO" us, not "AT" us, like we were in our living room having the discussion.

I just don't know which direction to run. Frankly, I'm scared as hell. I've read where a Gleason score of 9 is in all likelihood an indication that the cancer is outside the capsule, and the pro surgery and con surgery opinions, as well as the radiation and hormone therapy treatments, and it is all very difficult to put it together.

I'm trying to wrap my mind around all of this and it's tough..

Samsungtech1
Posts: 350
Joined: Jan 2011

Hi Dwhite,
You need to get your results back to make an informed decision. The two things everyone stresses here is diet and exercise. With your stomach that could cause some unique variations, but they are essential. If you haven't done so scroll through here and check out posts similar to yours. Check out the replies. There are a bunch of us with metastic prostate cancer, and a bunch more who had similar symptoms and got a respite from one treatment or another. Although most of us love our Onc's they are not perfect. They make mistakes. It is up to you to monitor your own health and speak up if something does not feel right.

More info equals better answers. Hard to relax, but it is what it is and relaxed is better for you than tense. Yoga is good. If you can't do the positions you can do the breathing exercises. It is like meditation.

Good luck,

Mike

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Dwhite.

There are many things going on right now. The information comming at you is an overload.
The high gleason score is a concern. The doctor sounds like he is level headed. You need to find out the results of the bone scan and the CT scan, this will for the most part set the path for treatment. For the most part if the cancer has spread, surgery may not be performed. I know what it feels like to wait on results. Just take a step back and wait to hear from the doctor. It is good that he described all of the treatment options, this helps. Waiting to hear works on any body's mind. It is going to take time to put all of this toghter. I went thru this myself and it is lot to deal with. After my initial visit with the urologist I had a 3 week time frame of waiting, during this time He came back and wanted to do a biopsy. It took about 3 to 4 weeks before a biopsy could be performed, then the waiting for results. Hang in there, Start to research all of the treatment methods. The more informed you have the better off you are. Again sorry to hear about this
Kurt, Gleason score of 7 and stage T2C at time of surgery

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Welcome to the forum but I am so sorry to read about your diagnosis of a Gleason 9 prostate cancer on top of all the other troubles you've encountered.

As your doctor undoubtedly informed you during your initial consultation, a Gleason 9 cancer is very serious. It's normal to go through the battery of imaging exams you received but even with such an advanced diagnosis they frequently fail to find imaging evidence of the spread of prostate cancer so soon after it is initially detected.

Even without imaging evidence of metastasis, I would strongly suspect that your cancer is not contained entirely within the prostate. There may be some clues to this in your biopsy report. Was there any mention of PNI or extra capsular extension? Something else that I would look for in your biopsy report is the type of cancer you have. Adenocarcinoma is the most common form of prostate cancer and is usually rather slow growing, particularly in a man your age. Given the apparent rapid onset with quickly rising PSA I'm wondering if another, more aggressive form of prostate cancer was detected.

Certainly you want to hold off on any treatment choice until your medical team has the opportunity to review your CT and bone scan. If there is evidence that the cancer is not locally contained (and it's hard to imagine that it is with a Gleason 9) removing the prostate will not do anything to slow the growth of prostate cancer elsewhere in your body. At the end of the day, it is not cancer in the prostate that kills us but prostate cancer that has spread to other organs like the bones, liver, lungs, and so forth. In other words, why remove the prostate if it's not going to stop the spread of cancer?

Ask you doctor about the likelihood (he should be able to cite statistics to you) of recurring cancer in a Gleason 9 patient after RP. My impression is that eventual recurrence is almost a certainty. When this occurs you are going to face other treatments such as hormone therapy or radiation treatment or both. You will also have to deal with the potential side effects associated with surgical removal of your prostate in the areas of erectile dysfunction and urinary incontinence in addition to any side effects that will occur with radiation and hormone therapy.

You might also want to talk to your doctor about any medical trials underway for initially diagnosed advanced prostate cancer patients.

You have some very tough choices ahead of you as you learn the extent of your diagnosis and the available options to treat it. Best of luck in sorting out a way ahead that works for you. Please keep us up-to-date on your progress.

K

hopeful and opt...
Posts: 1357
Joined: Apr 2009

There is an small chance that the biopsy results may be wrong, so ask that your biopsy slides be sent to an independent world class pathologist. Determining Gleason is very subjective,so there is a need for an expert in this field.

Also there is a test that more accurately measures extracapsular extension "an MRI using a tesla 3.0 magnet, along with a spectrocopy" (the spectroscopy is considered investigational and is not covered by medical insurance, but improves the results of the MRI.So if the the other tests do not show any involvement I suggest that you get this test. (This state of the art mri machines is generally found at major centers of excellence such as johns hopkins, sloan kettering.

It is a very good idea to consult with other specialists, such as a medical oncologist(to discuss options for hormone therapy and treatment), and a radiation oncologist. No matter what the specialty, you want a world class doctor, one who will do a better job than others.

My thoughts and prayers are with you.

hunter49
Posts: 204
Joined: Oct 2011

Welcome to our club. Unfortumately the memebership team at this club chooses you not you choosing it. I got diagnosed last year at 49 yrs old with a G 3+4 T1c on my biopsy. I had surgery and was upgraded (like to first class) to a 4+3 and a T2c since it was in both lobes. I had no posative DRE's after being violated by 7 doctors. Luckily all margins nodes etc. clean and so far after 3 post surgery PSA tests all undetectable. That said I still do not sleep well at night. You came to a good site a lot of great men and women here for information and support. You should see what type of cell you have, was it adenocarcinoma? From what I see in your jump of PSA you may have a more agressive cell and treament options will change. I would look to to for second opinions at Hopkins or Sloan kettering as they are on the cutting edge of all treatments. Good luck, stay calm and never give up hope or the fight.

mrspjd
Posts: 693
Joined: Apr 2010

DW,

Welcome to the forum. Sorry you have to be here, especially with everything else you seem to be coping with.

“Scared as hell”...totally understand. That’s a good way to describe how my husband and I felt after he was diagnosed with high risk T3 stage PCa in Feb 2010. He had a lot of cancer...9 of 12 biopsy cores all positive for PCa, all at very high percentages (a high volume of cancer), PeriNeural Invasion (PNI), and the cancer had spread locally to one seminal vesicle (ECE). His Gleason was a 3+4=7, not a G9, but pretty scary stuff to deal with, nonetheless. After we both did a ton of research and found incredible knowledge and support in face to face co-ed PCa networking group meetings, my husband chose to treat his cancer very aggressively. I’m happy to report that, for us, there is both a good quality AND quantity of life after his high risk PCa dx and treatments. PJD is doing well and we both continue to enjoy life to the fullest.

A Gleason 9 is serious as you seem to understand but IMHO, you may need to obtain more info to understand just how serious based on the extent of the PCa. Depending on many add’l factors such as PSA history, familial PCa risk, age, overall health, PCa volume, # of cores positive, G9 4+5 or 5+4, PNI, ECE, nodule found on DRE, expert pathology 2nd opinion on biopsy specimens, results of other diagnostic tests (in addition to the CT and bone scan), etc., for many G9 cases, there are several viable tx options available, all with curative intent. It may not be an easy road to go down (who said life was going to be easy, anyway?), but if you choose to take that road, you need to know that hope is out there and there are new PCa diagnostic tests and treatments coming down the medical pipeline almost daily. With a knowledgeable and experienced oncologist who specializes in PCa (a must!) as an important part of your medical team, you and other G9’s (and high volume G7’s) have more hope today then ever before. My husband and I personally know and are friends with two men (from the PCa networking group) who were dx’d with a G9 and are doing well and feeling good many years after their initial diagnoses and txs.

Best of luck to you on this journey.

mrs pjd

dwhite1031
Posts: 26
Joined: Jul 2012

Tomorrow we go to my Urologist for the results of my bone scan and CT's. Then we'll hoepfully be able to decide on a treatment plan. Sleepless nights and long days are taking their toll but I'm determined to overcome this. Will let all know what we find out and how we decide to go with regard to treatments.
Heartfelt thanks to all that have posted and also for this forum.

DW

hopeful and opt...
Posts: 1357
Joined: Apr 2009

If you go to religious services, find a clergyman who is upbeat...you only want positive people in your life.....for me research about this disease so I can be more in control helps me. There are all kinds of things that work for different people such as yoga mentioned by a differnet poster.....generally this depression lasts 2-3 months.

Also suggest that you see a medical oncologist who specializes in protate cancer....these guys are the experts on hormone therapy.

As I mentioned above there are second opinions and tests that you need to have to optimize your treatment......this can radically change your treatment decision. Please ask your doc to send the biopsy slides to, say, Freancisco Civantes(Florida) 305-325-5587, a world class pathologist.

dwhite1031
Posts: 26
Joined: Jul 2012

We recieved Bone scan and CT results. No indications that cancer has spread outside the prostate according to the radiologist that read them. My wife and I met with my Urologist and now will decide on treatment. He says with this Gleason of 9 and the fact it progressed this fast from nothing to this in less than a year, even though it's currently localized, it's aggressive.

One of the other Urologists in their group is their "robot guy" as he called him and if I choose to go the surgery route, he'd do that. We discussed the robotic surgery and the seed implants as the two treatments that were the most likely to fit my situation.

I already had a scheduled appointment to my Hematologist/Oncologist that has been monitoring my red cell and blood issues, and my Urologist wanted us to check and see if he felt that would have any negative effects on any treatments for the prostate cancer. My red cell count is still dropping as are my platelettes and iron numbers, but the hematologist doesn't feel it will be a factor.

So now we decide. Still looking at going to MD Anderson to see if they concurr. But this is really stressful.

dwhite1031
Posts: 26
Joined: Jul 2012

Feeling progressively more fatigued each day as well. But with my iron, platelette, & red cells levels dropping, I don't know if it's that, the PCa, or depression. I barely get thru a day at the office and when I get home, I just want to sleep. Asked this question during Hematologist visit yesterday since he is also an Oncologist, and he feels it's the PCa causing it & not my blood levels.....sometimes I wonder...are they just guessing?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

The scans showed no evidence of tumors outside the prostate and that is a good thing although often bone scans and CT imaging fails to detect microscopic metastasis.

I personally don't understand the recommendation of potential RP (robotic or otherwise) for a Gleason 9 patient with the other issues you have written about. I do get the brachytherapy option but am surprised that they didn't suggest BT combined with some form of external beam radiation which has be shown in some studies to be very effective in preventing cancer recurrence.

Here's a link that you may wish to review and ask your doctors about that shows very high success rates for Gleason 8 and 9 patients who receive both BT and external beam radiation.

http://www.ncbi.nlm.nih.gov/pubmed/15577440

In the absence of significant metastasis in the bones or other organs that could contribute to your lack of energy it seems to me that iron levels would have more impact that prostate cancer unless the doctor is referring to depression which can make a person tired and it's certainly not uncommon for one diagnosed with advanced prostate cancer to have initial feelings of severe depression and a common result of depression is tiredness.

You have a long and bumpy road ahead of you, brother, but you've started taking steps. Keep going.

Best,

K

mrspjd
Posts: 693
Joined: Apr 2010

DW,

I wonder if you’ve had any other diagnostic tests, in addition to the negative bone and CT scans to validate what your docs are telling you--that there are “No indications that cancer has spread outside the prostate” and “it's currently localized.” I don’t understand how your docs could be so sure of that info from only negative bone and CT scans. Those tests usually will not detect distant micrometastasis unless the PCa is very advanced.

My husband’s PCa was initially thought to be contained to the prostate by the docs (a urolgist, of course). His CT and bone scans were negative. Since PJD’s PCa was high risk, he personally made arrangements for additional imaging tests to more accurately stage the PCa. Those included EMRImaging and a color doppler ultrasound. Both confirmed/identified that the PCa had spread locally outside the prostate. His tumor staging was downgraded (worse) from a T2 to a T3. This add'l info helped him to better evaluate which PCa txs would have the best chance for successful outcome with the least amount of short and long term side effects.

You may wish to consider doing the same, or at least discussing this option with a knowledgeable PCa oncologist, prior to making a tx decision. Either way you proceed, wishing you all the best.

jmikew
Posts: 9
Joined: Jul 2012

First let me say how very sorry I am that you have to go through this....It is no fun but hang in there...there are better days ahead...I am 50 and underwent robotic RP at MD Anderson about 4 weeks ago....What I thought was a moderately aggressive cancer (3+4) turned into a very aggressive cancer after the pathology report...(4+3+ some 5) so you don't really know what you are dealing with...and while I might have done things differently based on this knowledge I didn't have that chance...I did read this article after the fact that gave me some comfort...it is about surgery improving survival rates for aggressive prostate cancer.

http://www.medicalnewstoday.com/articles/202732.php

I am very new to all of this so please don't base any decisions on my comments...but I do think knowledge is power as is a good doc...we both have a long road ahead...but I have a 6 year old daughter that I need to be around for...and that's my plan...I wish you all the best and you will get some great feedback from people here....hand in there my friend.

mrspjd
Posts: 693
Joined: Apr 2010

Hey jmike,

That study about RP improving survival rates for aggressive PCa is a 2010 article but important nonetheless.. It was discussed a couple of yrs ago on this forum. http://csn.cancer.org/node/202012. Guess it just goes to show how everyone interprets info differently & forms different opinions.

RP tx for high risk PCa with probable systemic features (may or may not be aggressive) does not follow recommended tx guidelines by the NCCN. With high risk PCa's like G9s, IMHO, prior to evaluating tx options, its critical to try to determine whether the disease is systemic or focal. Newer diagnostic tests such as the F18 PET/CT or the C11choline may be helpful in making this distinction, when indicated, especially when bone scans & CTs are negative. Obviously there's a lot to consider and, tx decisions are a highly personal choice based upon many add'l factors unique to each case.

Best,
mrs pjd

Samsungtech1
Posts: 350
Joined: Jan 2011

Dwhite,

Been there with fatigue more than once. For the most part I would say depression. What's worse is that most dr.s are guessing just as mucg as you. I use to stop taking my new meds to see it that was it, but basically depression will knock you out. I would be so sleepy by 2:00 that I could hardly stay awake. When I got off work I wanted to sleep. Funny but I would start coming out of it around 7:00 or so.
Have you discussed this with your doctor? Understand that just because they prescribe a medicine that does not mean it is the right one. You need to sound off if it does not feel right. Do not wait. They are guessing and you are the only one who knows if they got it right. Do not expect miracles, just know you should feel better and not tired all the time.
I am dealing with changing meds. Eventually, when you have multiple things wrong it is hard to decide exactly what is doing what, but if you are tuned to your body you can figure it out.

Good luck,

Mike

Samsungtech1
Posts: 350
Joined: Jan 2011

Forgot this part, but my oncologist did a test for B-12 come to find out I was around 132 and min is 139-935 or something. B-12 deficiency causes fatigue, and so many other things it is scary. I am sure your dr. Did blood work. Ask him what your B-12 reading was. There are so many things that it is unfortunate because you can not slack off. You have to be the one to ensure your survival.

dwhite1031
Posts: 26
Joined: Jul 2012

We just returned from the MD Anderson Cancer Center.  Everyone was great and though it was non-stop since we arrived late last Sunday, it was worth it. We have seen more doctors, nurses, technicians, and such in the past 5 days than I've seen in years.  LOL!  Everyday we have had to arrive at 6:30 am and have gone to about 4:00 or 5:00 pm everyday as well.  Exhausting.....
We were at the MDACC Mays Clinic and our primary clinic is the Genitourinary Cancer Center.

We have learned a lot they weren't able to tell us in here at our home medical facilities, not to imply negativity with regard to my local doctors, they just have so many more resources here at MDACC.  After Monday's initial consults, and a day full of exams and tests Tuesday, we were told the cancer is more advanced than we initially thought.  What we didn't realize and the doctors explained to us, is that even with surgery and with cancer shown to be localized in CT's and bone scans, it can be still present on a cellular level throughout the body and the cancer continues to grow and recurr.  That was a "bummer", but the treatment plans we were presented with has reassured us both of a positive outcome.

Also, my doctors told us that my clinical stage puts me in a group they want to study and asked us to consider my being be part of a clinical trial, since MDACC is a research facility as well. That was a no-brainer for us because if it will help with their research and other people someday, then of course we're all in and it reinforces our belief that we were indeed led here. 

The clinical trial is to study a new drug called Zytiga.  Patients are "randomized" into Group A or B. With each under a different protocol. "A" gets Zytiga, steroid, Lupron and surgery. "B" gets Lupron alone and surgery.  Both groups then get radiation and/or another form of chemotherapy if necessary. Zytiga has been proven to be successful in this type of cancer that has become resistant to other treatment, or has spread after surgery or without surgery. They want to see if it in combination with the other drugs prior to surgery will be beneficial.  Kind of using the drug proactively rather than reactively as it is used now.  Doctor said Zytiga is $6000-$7000 per dosage round, HOLY COW!.........but the drug company pays for that under the trial. 

The last two days at MDACC were comprised of tests to see if I meet the criteria for the clinical trial. So it's been scans, labs, more scans with names I can't begin to pronounce, more labs, a very "interesting" MRI, and an some X-rays thrown in for good measure.  :-)
We were told the last morning here that I did meet the criteria but the randomization placed me in Group "B".  We are of course disappointed I didn't get in Group "A" where I'd be getting the drug that may give me that "edge", but it's a random draw and I'm still part of this trial that can help other people & their research! So we're blessed to be a part of that!  I've also consented to be part of two other clinical trials where they will use surgery pathology samples from me in other research, so that's a good thing too!  We have to come back once a month for a couple of days each time and then surgery in December, and then more treatment.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I enjoyed reading your post and am glad that you are getting some answers. It's a brave thing to participate in a random trial and I wish you the best while I admire your guts. Looking forward to reading more updates.

K

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

Dwhite,

I wish you luck in your journey and admire your commitment.
Being from the group B in the clinical trial you have embarked is not being degraded. But as you say adding Zytiga to the blockade one may expect better outcomes. That is true if the cancer responds well to hormonal manipulations but none of the drugs can assure you eradication from the disease totally.
Surgery and then a follow up with radiotherapy is the treatment that could provide you with a cure.

What is intriguing and conflicting is the comment you received from your doctor when you say that “…it can be still present on a cellular level throughout the body and the cancer continues to grow and recur.”
There must be some logical basis to that statement otherwise surgery and radiation is expected to fail from the beginning and worthless. What is therefore the benefit that the trial provides you?

I read posts from survivors who committed to similar protocols without Zytiga or Lupron and got successful outcomes. They used the whole arsenal to fight the cancer, but they were confronted with advanced PCa and tried to combat it from all “fronts”.
I wonder if your diagnosis requires that much weaponry. Nevertheless having a chance in participating in the trial is extraordinary and it already is working in your favour. You can expect more detailed attention to your case, better tests and all done by due professionals in proper facilities.

I would recommend you to check on the side effects and risks of the treatment, and that you discuss with your doctors about responsibilities. What is covered if something goes wrong?

Hope for the best.

VGama

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

I have been going to MDACC at the Mays clinic since May 2010. They are great in how many people they handle. Usually I only go for one day every three months. I have been on the trial test for Zytiga since 02/2012 and my psa is holding 0.2. The doctor's think I can go until next year. They are keeping the PC in my Lypmh nodes. VA is suppy my Zytiga at no cost.

You should not be disappointed that you are group B, these guy's know what and where to put you. Group A would mean's that you are more advanced and you don't want to be there!

Since I started seeing MDACC they move my time out to 5 years + the past years. I think they will get me 10 Years. If the drugs don't kill me first! :-) Ha-Ha

SeattleJ
Posts: 32
Joined: Mar 2011

I was in the same trial during my treatment at Seattle Cancer Care Alliance (Univ of WA)in 2010-11. I was in Group A (at that time it was randomized--they didn't select the group)and did not need the radiation afterward. The Zytiga/Lupron/Prednisone combination for 6 months had some interesting side effects but I'm glad I went through it. In September I'll have my year and a half blood test to see if I'm still at the zero level. So far so good. Good luck with your treatment!

John

dwhite1031
Posts: 26
Joined: Jul 2012

Thanks for all of your replies & support. Dr said the MRI & Endorectal MRI purpose were to further determine staging. I saw surgical oncologist/urologist & fellow, radiology oncologist, medical oncologist & fellow. All explained things incredibly well & helped us to better understand it all. It was my medical oncologist Dr Tu, that painted the overall picture of my PCa & Gleason score of 9, & where we were now & what we should expect. Very polite, soft spoken & gentle soul. That was a tremendous help, especially for my wife. Also having our Nurse advocate talk with her on a woman to woman & not so much clinical level was just above & beyond!

Day2Day
Posts: 1
Joined: Feb 2013

I had a high PSA test one year ago, after a biopsy was performed I was diagnosed with PC.  They rated it G8, with a T1c rating on the tumor.  I hadaradical prostatectomy operation last August and the post op biopsy gleason score was raised to 9.  But this was all of the bad news.

Good news now is that they considered it localized still to the prostate, with no nodes extruding, no detected occurance in a selection of lump nodes, and negitive on the bone scans.  All good news.  Now I have to live with the shadow, every three months of testing hopefully will remain negative.  There are happy stories out there though, do not let it over shadow you living with the stress.

I opted for the surgery, as they looked at this option as a cure of the cancer, and am glad of my decision on this.  It is a very personal choice though, and what ever you choose, do not have regrets.  I have done various readings and research on different things, from marijuana usage, to different diets, to restricting my chemical exposure in everyday living.

I think all have merts and at worst can not hurt but in the end, I live as I did, with the shadow now, but I do not let it rule my life.  Hope yours turns out well for you.  I did find that having support can be the biggest factor in having a less stressful continued life.

cheers,

 

herbfar
Posts: 1
Joined: Feb 2013

I am 79 years old. I was diagnosed 5 years ago with prostate cancer, stage 4, psa of 22 and Gleason score of 9.  Obviously not good. I was put on Casodex immediately, folled 3 weeks later by Lupron every three months.  Within four weeks, my psa was undetectable and my testosterone was zero. Four and one half years later, still undetectable psa, still no testostrone.  Weight gain total impotence and lethargy were the main problems.  Lupron was discontinued after four and one half years. I received brachytherapy upon cessation of Lupron.  Now, nine months later, I find myself with a raging libido but a much shrunked penis.  A minor problem in the scheme of things but nonetheless a problem. My treatment is at MDA.

I present this to show there is hope, even in severe cases.  Hang in there all.  Each cancer is unique and real progress is possible.

 

 

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