Personal data - diagnosis

Personal data

Visible name: Don_R
Ctry: United States of America
Year of birth: 1956
Age: 67
Occupation: Test Engineer
My Website:

Data at initial diagnosis

Date: 15.02.2013
Age at diagnosis: 56
PSA: 101.00
Biopsied? Yes
Gleason Score: 4 + 5 = 9
TNM-Stages: T4 N1 M1b

Maximum measured prostate volume

Volume in ml or cm³:

Postoperative pathological data

Gleason Score:
See stories of:

Prostate cancer treatments

** PSA level at the start of the treatment
from to PSA** Type Clinic City
15.02.13 20.02.13 101.00 ADT1
04.03.13 98.70 ADT2
20.11.13 07.01.13 35.00 ADT1
07.01.14 35.45 ADT3 NIH Bethesda
01.04.14 48.64 ADT1
01.05.14 80.05 Chemotherapy


NEM = Nutritional supplement
from to Medication Quantity / unit of time
Quantity per D / M / Y etc.

PSA-History    ng/ml    logarithmic

PSA-History    ng/ml    linear

PSA doubling times in years

Doubling time is greater than previous period.
Doubling time is smaller than previous period.
* Calculated backwards for 1, 2, 4 and 8 periods.

Limit = 3 years

Calculation of doubling times in days

Doubling time in years:
Doubling time in days:
Date PSA 1* 2* 4* 8*
24.12.12 84.70
28.01.13 101.00 0.38
20.02.13 98.70 -- 0.72
25.04.13 0.80 -- --
07.06.13 0.20 -- -- --
03.07.13 0.30 0.12 -- --
04.08.13 0.80 0.06 0.08 --
29.08.13 1.30 0.10 0.07 0.49
21.10.13 3.40 0.10 0.10 0.09 --
11.11.13 6.20 0.07 0.09 0.08 --
11.12.13 13.00 0.08 0.07 0.09 --
20.12.13 21.57 0.03 0.06 0.08 0.14
07.01.14 35.45 0.07 0.05 0.06 0.08
21.01.14 28.58 -- 0.22 0.09 0.08
04.02.14 32.06 0.23 -- 0.12 0.09
04.03.14 37.16 0.36 0.30 0.26 0.11
01.04.14 48.64 0.20 0.25 0.50 0.12
14.04.14 60.86 0.11 0.16 0.21 0.13
01.05.14 80.05 0.12 0.11 0.18 0.15
19.05.14 54.19 -- -- 0.38 0.31
09.06.14 34.58 -- -- -- --
30.06.14 18.20 -- -- -- --
22.07.14 12.40 -- -- -- --
19.08.14 8.67 -- -- -- --
08.09.14 6.60 -- -- -- --
Date PSA 1* 2* 4* 8*
30.09.14 6.01 -- -- -- --
21.10.14 6.49 0.52 -- -- --
12.11.14 7.49 0.29 0.37 -- --
02.12.14 8.06 0.52 0.37 0.81 --
23.12.14 10.74 0.14 0.22 0.27 --
12.01.15 14.26 0.13 0.14 0.20 2.36
03.02.15 27.86 0.06 0.08 0.12 0.27
24.02.15 38.41 0.12 0.08 0.10 0.18
10.03.15 29.30 -- 1.32 0.15 0.19
17.03.15 33.24 0.11 -- 0.14 0.17

My Story

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Last PSA from

Personal stories

25.04.2013 0.80 25.04.13
So it all started for me at the young age of 55. Happily married for 34 yrs and four wonderful children...

My philosophy in life was †œif it ain't broke don't fix it†, even when it came to doctor visits and physicals (turned out to be a poor philosophy)!

From early 2011 to Oct 2012, I was experiencing some classic symptoms of an enlarged prostate (BPH). Then out of the blue, while at work, I got a severe pain between my pelvic and hip. I was totally convinced that I sprained a muscle and began some home remedies, like pectin (which appeared to be helping).

In Dec 2012,with some strong encouragement from my wife, I had my 1st physical in20 yrs, which included a DRE, and my first ever PSA test.

Test results: DRE confirmed an enlarged prostate, but †œage appropriate†. Then my PSA results came back showing a value > 84ng/ml (with normal range 0-4ng/ml). Clearly this was not good and I quickly learned a lot about the PSA implications.

Quick referral to a local Urologist... This was a no brain'er for needing a biopsy. Had my biopsy and 12 of 12 cores came back as being positive for cancer, with a Gleason Score of 9 (4+5). Started Casodex and scheduled a CAT/Bone Scan. Scans results showed that the cancer had spread to my hips, spine, ribs and pelvic area (Stage IV aggressive cancer)

Needless to say, such a diagnosis is quite a shock for yourself and loved ones. Family members were told shortly after getting my high PSA results and the cancer outlook. I especially wanted to warn my brothers about the need for PSA screening. After much sole searching, I decided that it was best mentally for me, and possibly for the benefit of others, to share my condition with my co-workers.

At this cancer stage there really was only one choice of started Hormone Therapy HT), Lupron w/ Casodex. After just a couple of weeks post 1st Lupron shot, my hip pain began to disappear and within 2 months it was 95% gone, and PSA has dropped from a high of 101 to .8, pretty happy about that.

So far the only SE's I've experienced are some fatigue, minor muscle aches and hot flushes (A reasonable trade for the benefits I'm getting).

I do recognize the effectiveness of HT is limited, the duration of which can be significantly different for each person. Current plan is to monitor PSA's and when we start to see a rise, look to the 2nd line therapy of PROVENGE (sipuleucel-T).
07.06.2013 0.20 07.06.13
Got another PSA result and it's still heading down with the ADT... Side effects from Lupron/Casodex is still manageable at this point. Got my 2nd Lupron injection a week ago and the fatigue and muscle pain (pain as if I worked out the day before) seems to have gone up a notch.
15.07.2013 0.30 03.07.13
Latest PSA result was just up ever so slightly from the previous one. I'm not going to get too excited about the increase, and will assume the fluctuation is simply due to lab inaccuracies. My blood was drawn on July 3rd, so maybe the lab techs had some fireworks on their minds :)

Symptoms from the hormone therapy still remain relatively mild. A round of bone/ct scans have been scheduled for the end of August, so I am interested to see if there is any significant changes from those taken during my initial diagnosis.
25.08.2013 0.80 04.08.13
PSA rising a little more, but not too worried. Have started experiencing pain in the knees and I am assuming it is just a side effect of the drugs. Had a nice vacation in the Yellowstone's, such beautiful sights.

Once I get the Aug bone / ct scans,and Sept.visit with my Oncologist, I hope to have a better idea of what's to come...
02.09.2013 1.30 29.08.13
Well, latest PSA was up some more (1.3) and knee pain getting a little worse. Got a preliminary look at the bone scans and saw signs of something (white) on the knees, which was not obvious in the first set of bone scans. Not sure yet if it is the cancer spreading, but should know more after my upcoming visit with my oncologist, in just a few day. Also got another Lupron shot on the same day as the bone and ct scans were done. These shot cause just a little pain for me, really nothing worth complaining about.
04.09.2013 1.30 29.08.13
I guess I can chill out for a little longer... Bone scans; no new lesions & some have decreased in intensity. CT scans; similar results. Getting a good response to the Hormone Therapy (ADT).

I'm a little confused with what I saw on the knees during my bone scan (preliminary view)... doc was unable to bring them up on his computer during my visit,and there was no mention of knees within the lab test reports. However, because of my knee pain, he has scheduled an MRI of them.

My oncologists comments were †œyour CT scans are looking really good and though the PSA is up a touch, the overall picture looks great†. He sees no reason to change the current treatments. I'm not hitting a PSA Nadir level that I was hoping for, but I will take goods news when presented with it!
22.09.2013 1.30 29.08.13
Reviewed the results of the knee MRI with my oncologist, and there were no indications of cancer seen. They believe it is probably some kind of arthritic condition and I will take over the counter meds to relieve the pain. Next PSA is scheduled towards the last week of October. All and all, good news, so on with life....
23.10.2013 3.40 21.10.13
Got my October PSA results and it went from 1.3 to 3.4 :( My Oncologist said we don't need to panic yet, but the steady increase in PSA means we need to start thinking about the next form of treatment. He suggested I start looking at the various clinical trials, to see if there are any that I'm interested in pursuing. Provenge is still on the table as a possible next step, but I am looking at all of my options.

My oncologist has also been wanting to start me on Zometa for bone health while on HT, but I need to get an infected tooth taken care of first, as Zometa can cause something called osteonecrosis of the jaw (ONJ), which is not a pleasant condition by any means. The knee pain is being effectively managed with just some daily Advil†™s. Off to doing some research on open trials....
18.11.2013 6.20 11.11.13
PSA is still climbing (6.2), and now some of the urinary symptoms that I had before Hormone Therapy / ADT was started, are starting to return. Numbers and symptoms sure seem to indicate the cancer is starting to advance. Am just hoping that it does not get to the point where the hip pain returns . Tomorrow I'm having the tooth pulled because it kept getting infected (even after 3 root canals). On a positive note; the knee pain seems to have gone away. I was also able to get an appointment with a leading US prostate cancer specialist, for the first of next year. He order some blood work be drawn prior to the appointment, and I was surprised when the nurse ended up needing to take 16 vials of blood.
12.01.2014 35.45 07.01.14
The last 3 months have been quite busy, not only with the Holidays, but with making some major decisions on the next type of treatment.

PSA had been steadily climbing since my low of 0.2 in June of 2013; pretty much doubling every month since. When it got up to 3.4 by the end of October it was quite clear that the first line hormone therapy was beginning to fail. For my particular case, I would consider that I got anywhere from 5 to 6 months from the Lupron/Casodex hormonal therapy.

On 11/20/13 we decided to stop taking the Casodex (Bicalutamide) drug, as some percentage of people have a positive response by doing so. I was not one of the lucky ones to get such a positive response and by 12/11 my PSA was up to 13.0 and the latest one on 01/7/2014 was up to 35.

Although I had every intention of making PROVENGE® (sipuleucel-T) my next therapy, some other options presented themselves that needed to be considered. One of those options was to get an appointment set-up with a Prostate Cancer specialist in Virginia, a Dr. Charles Myers; an appointment was set for Jan 10th 2014.

In addition to the appointment with Dr. Myers, I also began looking into a clinical trial at the National Institutes of Health (NIH). The trial number at NIH is #3-C-0146 and trial ID is #NCT01867333. It is a randomized Phase II trial that is combining a vaccine therapy (PROSTVAC /TRICOM) and Enzalutamide (Xtandi) vs. Enzalutamide (Xtandi) alone.

I enrolled in the trial on Jan 7th and was randomized into the arm of the trial that includes both the vaccine and Xtandi. Received my 1st vaccine injection, and Xtandi pills, on the same day as my enrollment. Three days later I had my initial consult with Dr. Myers and during the visit he spoke very highly of the NIH trial and my participation in it. He told me that Xtandi would have been his 1st choice of next treatment for my cancer, and felt the vaccine is a bonus.

There were some very frustrating delays getting up to this point; I had to be off the Casodex drug for a minimum of 6 weeks, before being able to start on the NIH trial, and getting an appointment with Dr. Myers took almost 2 month (granted that included the Nov/Dec holidays).

Although I wish things could have happened a little faster, I'm very pleased with the end results. I'm excited to be taking part in the clinical trial and am very happy to have my overall health monitored by a renowned Prostate Cancer specialist (Dr. Myers).
15.02.2014 32.06 04.02.14
Two weeks after starting the Xtandi & Prostvac trial, I developed a rash that was pretty much showing up all over my entire body. There was no pain or itching associated with this rash, but apparently it was an uncommon side effect of the trial meds, and caused some concern for the trial team at NIH.

I was scheduled to get my 2nd two week vaccine shot and lab tests, but because of the rash, I was admitted into the NIH hospital (in isolation) to examine the rash. NIH's trial team, dermatology, and infectious disease experts did a thorough examination of the rash, and by the end of the day they concluded that it was just a drug reaction (not a virus). Since the rash had started to diminish from the day before, they believed my immune system was doing what it is suppose to do, and was dealing with the new meds, so I was allowed to continue with the trial without any interruption. I was very happy to hear that news and have since received my 3rd vaccine shot and lab tests on 2/4/14.

The side effects from Xtandi/Prostvac med have been quite minimal. The 2nd shot (in the leg) caused localized pain for a few days, similar to being punched in the leg (aka Charlie Horse). The 3rd shot caused a similar pain, but went away in just a day.

My 1st PSA's since starting the trial dropped and the next one went back up a little. Not too concerned about the numbers at this point, seeing that I am feeling better than I have in the past 4 months. Dr. Myers mentioned that he has seen a PSA flare effect with some of his patients starting Xtandi, maybe the cancer cells dying off?

I must mention that the staff and quality of care provided by NIH has been absolutely wonderful. Although it's a 5-6hr drive to NIH, and the winter weather has not been all that cooperative, the payback has been terrific. Hoping this combination of new therapies provides for a long lasting remission.
Note: I've indicated ADT3 on the graphs, but it is really 2 ADT's plus an immunotherapy (Lupron+Xtandi+Prostvac)
03.04.2014 48.64 01.04.14
Not so good news; got my 3 month ct/bone scans and blood tests at NIH and my PSA is still rising, scans show new lesions on kidney, liver and shoulder. I am also having problems with swelling of my right foot/ankle, with some pain in the right pelvic/leg, which is apparently being caused by cancer growth of the pelvic lymph node and pinching off of blood flow to the right leg.

The team at NIH felt that due to disease progression, it was in my best interest to withdraw from the trial. I knew when starting the trial that some people simply do not respond to Xtandi and it appears I fall into that group. As for the Vaccine component of the trial; this was intended to provide a long term immune system response, so even though the Xtandi did not work, there is some possibility that the vaccine effects will continue to support the next treatment.
NIH has offered that I join a study of the combining Cabozantinib (XL184) plus Docetaxel and Prednisone, which I am considering, but this will require a 29day †œwash out† of the current drugs. I am currently requesting Dr. Myers opinion on the treatment being offered.

There are still a number of hopeful treatment options available, just having to decide on one much earlier than expected.
27.04.2014 60.86 14.04.14
Met with Dr Myers and he said that because of cancer involvement of the liver and adrenal gland, I needed some rapid and extensive tumor kill, and that joining the NIH study would be prudent. In addition to this NIH study he will begin formulating a plan B treatment, should the Docetaxel (chemo) and XL-184 treatment not produce the results needed. The NIH treatments will begin on April 29th..
23.05.2014 54.19 19.05.14
Started the NIH study trial of Docetaxel with Prednisone and XL-184 (cabozantinib) 3 weeks ago, and just received my second cycle of Docetaxel. The Prednisone and XL-184 pills are taken daily, and the Docetaxel (chemo) is IV dripped every 3 weeks. Two weeks after the 1st cycle of chemo & XL184 I started getting some decent relief with the swelling of my right leg and also improved leg lift strength. I also started noticing significant hair loss, which has continued for the past week. Have lost most of my taste buds, so pretty much all food tastes like cardboard, which I understand is a common side effect of the chemo. I have not experienced any nausea yet, and so far only minimal fatigue. Having some sensitivity / numbness of the fingertips, which is a common side effect of the XL-184.

I'm encouraged to see my PSA drop, but had been advised by Dr Myers that even if it went up, it would not have meant that the treatment was not working. A series of scans are scheduled for the end of June, so for now, physical symptoms will be the only indications of treatments effectiveness.
01.07.2014 18.20 30.06.14
Got my 3 month chemo/xl184 trial scans today and things are going in the right direction. PSA dropped to 18.2, CT scans show tumor reduction size at pretty much all soft tissue locations. Bone scan results were mixed, with some uptick on the left hip area, but due to all other indications (with how good I feel being included), they strongly suspect I'm seeing a early treatment flare effect on the scans, which may not be indicating an increase in the cancer. Apparently this flare is not that uncommon for someone,shortly after starting chemo.

Side effects over the past month;
1) Had a short episode of my right foot burning, which is a side effect of the xl184. Felt like I burnt my heel and big toe in the hot sand, but had no blistering. It was quite uncomfortable to walk for a few days though.I kept applying the lotions prescribed and my feet a feeling quite good for now.
2) Have had 4 or 5 ten minute long episodes of severe hand and feet cramps, Hands cramp up into a fist and is quite painful, and are impossible to open them. Not a common side effect of either med, but the clinic has observed this in other patients on the trial. Nothing in the blood work to indicate a reason, suggested hydration.
3) Hair has stopped falling out, but is quite thin,and I can see my scalp (this is from chemo). Color of what's left, has turned white (was salt and pepper, heavy on the salt) and this I believe is from the xl184.
4) Fatigue is starting to kick up a notch, where sometimes a extended stair climb can be exhausting. Exercise is suppose to help combat that, so back to the treadmill...both meds can cause this.
5) Low PSA, no pain, improved scans; I'm happy to take these over the other rather minor discomforts!

Overall, I'm very happy with the direction that this trial is taking things.
23.07.2014 12.40 22.07.14
Got my 5th chemo cycle, PSA has now dropped to 12.4, so still moving in the right direction, and all other blood tests look normal. Tried chomping on ice during the infusion, to see if it helps with the taste buds, but the jury is still out on that. During the past 3 weeks noticed having very frequent heart burn and a dry cough. The docs said that both are likely a side effect (SE) from the prednisone (steroids), so they prescribe some Zantac to add to the mix of drugs. Getting a little tricky taking these meds as the XL-184 has to be taken on an empty stomach, nothing to eat 2hrs before or one hour after and now since the Zantac can interfere with XL-184, have to take that no less than 4 hours after the XL-184 and at least 14hrs before. It's not so bad during the work week, with regularly scheduled meals, however weekend food consumption times can tend to be more unpredictable for us.

Overall I'm still very pleased with the results achieved from this protocol and consider the SE's to be minimal.
19.08.2014 8.67 19.08.14
Had more more blood testing done and received my 6th chemo cycle. My feet had been burning for the past three weeks and the doc's were concerned about their condition. They discussed reducing the XL-184 to 20mg (from 40mg), but once they do that, the trial will not allow a patient to go back to 40mg if things should clear up. I told them I would prefer to stay at 40mg., and if they get worse, we can discuss a reduction (so far the pain is tolerable). Not everybody experiences this burning feet SE from the XL-184, and the nurse that I see at NIH said that I am the only patient she has on the trial who is having this issue.

The only new side effect has been a few instances of diarrhea, which must be quite common, because the nurse has been asking since day one of the trial if I have had experienced this problem; a few Imodium are all that is needed.

My latest PSA test came back at 8.67, down from 12.14! Some other interesting test results have been with my Alkaline Phosphatase; at start of trial it was 178U/L and is now 88U/L (normal is 40-130 U/L) and my Bone Specific Alkaline Phosphatase have gone from 46mcg/L to 15mcg/L (normal range is 0-20mcg/L). Both of these number are important, since some studies have shown a correlation between higher Phosphatase numbers and bone cancer activity.

It would appear that for the moment we have the cancer doing some back peddling. I hope these positive indications are soon backed up by the scans that I will have the second week of Sept.
08.09.2014 6.60 08.09.14
Completed 7th chemo cycle. PSA is down to 6.6 from 8.67, CT Scans showed some reduction in lymph nodes, and bones scans were stable with no new lesions. The trial doc was very please with my test results and sincerely believes the combination of these two drugs are providing me with better results than either drug would individually.

The fatigue following the last chemo cycle was actually less than the prior one. Feet burning is still a problem that comes and goes and also had some minor hand burns this past month. These burns can be uncomfortable and seems to be worst the week following the chemo cycle.

I have no new SE's, but do have one that I never recognized until I started viewing photos of my sons wedding... not only is my hair very thin and white, but my skin color is also quite washed out. The docs at NIH confirmed that this skin pigment change was being caused by the trial drugs.

Bottom line is that the results are still favorable and I will continue on the trial for at least another 9 weeks (until the next scans), getting tests and chemo every 3 weeks.
02.11.2014 6.49 21.10.14
Been busy and skipped a few updates... 10 days after my 7th chemo cycle I had a episode that required a hospital stay. I was determined to be Neutropenic, where my neutrophil count had dropped to 100, and at <500 you are considered to be at high risk of getting an infection. I was given a shot of filgrastim (Neupogen) to boost my counts, and was released the next day when they were confirmed to be >500

Sept. 30th †“ I had my 8th chemo treatment. Since I had experienced the low nuetrophil count following my previous chemo cycle, NIH gave me pegfilgrastim (Neulasta), in a prefilled syringe, for me to self administer 24hrs post-chemo treatments. I was pleased to see my PSA drop a little more; down to 6.01 from 6.6 this visit. The doc's however did not like the looks of my feet sores at all, and after some considerable thought, they asked that I stop taking the XL-184 pills to see if that would help clear things up. After being off the XL-184 for an entire week, my feet and hands improved considerably, and I was allowed to resume the XL-184 at the normal trial dosage of 40mg/day.

Oct 21st †“ I had my 9th chemo treatment. My PSA actually went up a tad this visit, from 6.01. to 6.49; not sure how to take this small rise, the nurse who treats many other patient on chemo said she's seen this happen in other patients, so I'm not too worried just yet. I asked the doc if he thought my PSA rise could be associated with being off the XL-184 for the one week, but he did not believe so, and was not concerned about the number at all. They did observe, for a 2nd time, a high blood glucose reading and said that they may include an A1C check on my next visit (I should have passed on the Mocha Frappe on my trip down to NIH).

Mid-Nov I'll get another PSA, set of scans and chemo#10, so that visit should be interesting.

I'm feeling good, going to work every day, and am having no hand or foot pain, so interestingly I continue to benefit from that 1 week vacation from the XL-184.
24.01.2015 14.26 12.01.15
Since my last update I've have had Chemo cycles 10 thru 12, with the 12th one being two days before Christmas.
PSA's continued to go up with each 3 week visit; from the 6.49 to: 11/12=7.49, 12/2=8.06, 12/23=10.74 and 1/12/15=14.26. This is obviously a concerning trend, but the scans, including the latest on 1/12, still show stable disease, with maybe some minor increase in the pelvic lymph nodes, but not significant enough to exit the clinical trial.

Have had some complications lately as I developed as pneumonia, and on Christmas eve was admitted to the hospital due to a 5cm abscess on the lung. Because of this abscess I went off the XL-184 for 3weeks, and my last visit to NIH on the 12th, we skipped the chemo. I have restarted XL-184 at a lower dose (20mg vs 40mg), which keeps me eligible to stay on the trial. Will probably skip chemo at my next 3week visit, with the possibility of starting back up in 6weeks (assuming the abscess clears up).

Biggest issue I'm dealing with right now is legs swelling and some significant pain in the right leg, which we suspect is tied to the pelvic lymph node increase. I'm working with a physical therapist specialized in treatment of †œlymphodemia†. Hopefully that will help some, because the current pain meds just aren't cutting it.
For the near term I will continue on the clinical trial, but indications are that the cancer has become resistant to the current chemo/xl-184 therapy, so it is time to look for the †œwhat next† options.
22.03.2015 33.24 17.03.15
My mind has been so occupied over the last two months with trying to figure out what my next best treatment might be, that I've had little mind to update here. Since my last update I have received chemo #13 and #14 and my PSA s have continued to rise, reaching into the high 20's / mid 30's. The swelling in my right leg has actually decreased quite a bit, while the left leg is now swelling worse than the right ever did. I enjoyed my taste buds coming back during the chemo/xl184 break; unfortunately taste once again is slipping away.

I just received notice from NIH that the scans taken on Mar 17th showed two new lesions, one in the pelvic bone and one on the shoulder blade. Per the trial protocol these spots constitute disease progression and an end to my participation in the docetaxel/XL184 trial. There were no other trials currently available at NIH, that were appropriate for the aggressive nature of my cancer.

Recognizing the likelihood that some of my cancer had become resistant to docetaxel, I had already begun looking for another plan B. With the support of a friend whom was also diagnosed two years ago with similar stats as mine, and today reports being cancer free, I initiated a new plan that includes shifting my treatment to some doctors at the Mayo Clinic and Minnesota Oncology. These doctors are known to treat more aggressively, with curative intent vs. a palliative standard of care, which is difficult to find.

I obtained a Choline-Pet Scan at Mayo, which produced some scary images, and lead to some additional blood testing, as well as a kidney and brain MRI's. Those tests showed good liver and kidney function, and yes there is a brain; and with no cancer! These images will provide a great baseline for determining the effectiveness of next line of treatments.

The Minnesota oncologist recommended that I receive 3 cycles (one treatment every three week), of Jevtana (Cabazitaxel) locally, which is a standard FDA approved chemo treatment. Two weeks after the 3rd treatment, I will be re-scanned at Mayo in order to determine if any cancer cells are not responding to Jevtana. If there are some rogue cells remaining, I'm hoping we can add some other form of treatment that will wipe them out!

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