An after the fact thought.............

[Guest guest]

I know we have found out the extent of Elgie's cancer and that it is in 5 places

in the bone and I am so elated that we went to Dr Myers and he is going to help

us.....BUT........My after the fact thoughts are.....How does a team of

supposedly top specialists at s Hopkins Hospital....not know if the cancer

is in the bone or not and not be professional enough to do more testing to

absolutely know what we are facing and if possibly more could be done......and

just send us on our way from October/November until June with only a psa test to

let whatever is there continue to continue to grow?

Just wondering............Hope not to bother anyone too much.

Sincerely,

Jackie

Prostate History Below

Prostate Cancer Digest

GENERAL

Your preferred name: Jackie

Patient’s name or nickname: Elgie

Your relationship to him: Wife

Location/Country: USA

Age at Diagnosis:56

Patient's general health: Good/ lower back arthritis Very painful

Is there any family history of breast or prostate cancer? None

DOCTOR'S INFORMATION

Date of DRE:??? Diagnosed November 2003

DRE positive or negative: Positive

(It is positive if the doctor felt something)

Stage given at time of DRE: Stage lll (T3 N0 M0) This Stage was last updated in

2004

(The doctor stages the disease at the time of the DRE)

PSA

Past PSA history: (5 years if available)

PSA when found 6.3

PSA before Radical Prostatectomy

Nov. 10 2003 6.3

After Radical Prostatectomy

April 26 2004 0.3

Post Surgery

May 4, 2004 0.3

May 25, 2004 0.3

Nov 2004 0.2

Post Radiation

May 2005 0.04

Nov 2005 0.1

June 2006 0.1

Jan 2007 0.3

July 2007 0.5

March 2008 0.8

Sept 2008 0.9

March 2009 1.15

Nov 2009 1.93

June 2010 2.6

Jan 2011 3.9

July 2011 5.9

Dec 2011 0.51

May 2, 2012 0.1

BIOPSY INFORMATION

Date of Biopsy: January or February 2004

Gleason score assigned by local pathologist: 3 + 4 = 7 with focal pattern 5,

Tumor site Right and Left portions of the prostate gland 4 core needle samples

on left compromising 80% of specimen, Right biopsies negative

Gleason score assigned by expert pathologist: (If slides sent for second

opinion)

OTHER TESTS

Bone or CT scans: (results) July 2011 cancer in pelvic area in bone

Endorectal MRI or ProstaScint: (findings) ???

Other Blood tests: (findings) Has been anemic on and off for a few years. At one

time they prescribed Iron. Nothing prescribed for anemia last 3 years.

OTHER DOCTORS CONSULTED and their opinions, advice or findings.Urologist -

Radical Prostatectomy, 38 IRMT treatments, watchful waiting, Bone Scan show

pelvic cancer in bone, Casodex 2 weeks and Elgiard and come back in 6 months.

Radiation Oncologist: 38 IRMT treatments ended October 2004

Medical Oncologist: Going for 1st visit Medical Oncologist, Dr. Denmeade & Nurse

Practitioner October 11, 2011

Had 1st Appointment at s Hopkins Medical Oncologist Dr. Denmeade &

Colleagues

Megace 40 mg prescribed for hot flashes. Advice from these doctors was to have a

psa in 3 months, 6 months and to come back to them or other Medical Oncologist

after the 6 month psa and decide the next steps to take. The Doctors said there

are about 10 more treatments after the Eligard.

Other: For the last month a recent red lined half moon rash above eye and in

middle of forehead. Prominent at different times. No consistence. Appears at

will.

TREATMENT HISTORY

History of treatments and results in chronological order since diagnosis,

including pathology results after surgery if applicable, and additional info if

initial treatment failed.

Urologist -April 2004 Radical Prostatectomy

IRMT 38 treatments ended October 2004

Watchful waiting until July 2011

Bone Scan July 2011 show pelvic cancer in bone

August 2011Casodex 4 weeks

August 2011 Eligard and come back in 6 months

January 2012 s Hopkins Appointment. PSA low enough to hold off on Eligard

Shot. Re-evaluate in 3 months.

OTHER INFORMATION

November 2011 He is experiencing hot flushes.... day and night, many aches and

pains, is feeling very weak, tired (sleeps most of the time) and simply doesn't

feel good at all. He Is also having problems with his memory.

November 15,2011~My Bf is so very tired every day and is finding it more and

more difficult to get out of bed each day. He feels so very miserable since

about a month after the Eligard. He is so tired of feeling so bad. Within the

last month and a 1/2 moon red line has appeared on one half of his forehead and

eye. I am hoping to get any input as we won't have an appointment until April of

2012.

November 17, 2011~The results from the blood work for my husband today shows

that his triglycerides are over 550. He use to be 200's. We are not sure why

because he eats a good diet. We have to inquire if the Eligard has caused this.

His blood count is 11.5 which he usually is around a 13.5 . The doctor wants us

to check the triglycerides in 3 months again and check the blood count in a

month. As for the red mark on his face and eye..........they gave him a fungal

cream prescription. We have to follow up with the Family doctor in 4 weeks. He

also increased his Cymbalta from 30 to 60 mg a day. We will continue working

toward getting to Dr. Meyers for a 2nd opinion. We have also started him back on

Soy milk and soy products. Sure hope this helps him.

December 2011

Heart Doctor Appointment - Heart Monitor, Stress Test = Irregular heart beat /

Increased Carvedilol / 2 weeks later Heart Monitor / Carvedilol stopped

Irregular Heart Beat Increased Carvedilol to 12.5 twice a day. Heart is beating

55. Strong and no longer enlarged as was previously........10 years ago. Follow

up in 6 months.

January 11, 2012 These are test that are lower, higher or have changed since

last blood draw even if I do not know what some are...

Triglycerides have dropped dramatically to 152 with new blood work/ Good

cholesterol at 265 High / HDL 112 / Vitamin B-12 187 / and received a B-12 shot

once a month for now / Total Protein is low 6.20 / Glucose 102 / BUN 27 High /

BUN/Creatinine Ratio 25 High / AST(SGOT) 58 High / PSA 0.51 / RBC 3.42 Low / HGB

11.8 Low / HCT 35.2 Low / MCV 102.9 High / MCH 34.5 High / Glucose 102 /

Steroids for about a week for eczema on arms and legs....started to help and now

getting back to worse. Using Elecon cream daily. Switched from Elecon cream to

another cream. Eczema got much worse and is now healing somewhat.

Follow up with Family Doctor every month.

January 28, 2012 Elgie has gone from one extreme to the other with his sleeping

& well being. He was sleeping and tired previously and then he couldn't sleep

and now for the last 4 days he is sleeping better and feeling better and it's

almost time for the next shot. It seems like it took about 4 1/2 months to start

feeling better after the Eligard.

March 21, 2012 Feeling okay but still very tired. Back has been much worse.

Taking much longer {2-3 hours} to loosen up in the a.m.

3/2012 - B-12 Shot Every Month

5/2/2012 Blood work done this morning for Dr. Myers appointment on

Friday. Still extremely fatigued. Sleeping much better now but sleeping too

much. Rash on legs, chest, arms - Think eczema. Can't seem to keep it gone.

Appointment with Dr. " Snuffy " Myers on 5/4/2012

May 4, 2012 - Our appointment with Dr. Myers went well. Elgie has a new outlook

on his life. Dr. Myers was awesome! It was an honor to meet him. His 1st plan is

to start Elgie on a Mediterranean diet, finasteride, a pain patch, Vitamin D3

5,000 iu x 2 @ bedtime to be adjusted on a monthly blood test, Lecithin 1200 mg

once a day, Reservatrol Nitro 250 daily, Pomegranate & Super Curcumin. Psa,

testosterone & blood work once a month. Thyroid check due to all of the

symptoms......fatigue, memory loss & depression are all thyroid issues too. His

testosterone levels were already too low (232) before he received the Elegard

shot in August. Dr. Myers said he should have been at least

500-600...........and he was only 232. He is now a 22.

We are to get an F18 PET/Bone Scan within the next week. Upon the results we

will know if the plan should change. Dr. Myers said that Elgie's records were

very confusing. No Doctors would give us definitive information and apparently

the records were not definitive either. There wasn't any information regarding

what type or how much radiation he received. His NP was either frustrated,

confused or both. Elgie was ready to walk out but thought he would give Snuffy a

chance. We did not know answers that she was asking. We told her this is why we

are here. He said we will know more about everything once the results come in

whether or not the cancer is in the bone or not. His psa is .1, low Vitamin D,

High cholesterol, high triglycerides 597. The great news is he says in

increments, Elgie should start to feel better in time. It may take months but he

is very optimistic. Elgie is elated with Dr. Myers! I'm so glad. . Dr. Myers

thinks we should do a different treatment course and not hrt treatment with the

issues Elgie has been having since the Eligard. We'll keep you posted once we

get the PET/Bone scan completed and have our consult with the Dr. We thank each

and every one of you for being here for us. I brag on everyone at least once a

day Dr. Myers ask how we found him & we told him Our friends from the Ladies

Prostate Forum on the internet & Our friends at advanced prostate cancer groups

on the internet. Any questions just ask. Great big huge hugs ladies. May God

bless each of you.

May 14, 2012 - We went to Martha Jefferson Hospital for the F 18 PET/Bone Scan

May 15, 2012 - Dr. Myers Office called to schedule a phone consult with him.

May 16, 2012 - Dr. Myers called 9 a.m. this morning. The F 18 PET/Bone Scan

shows 5 (mets, lesions whatever they are). One on the 7th Rib on the right side,

another on the 3rd Lumbar Vertebrae, one on right side of pubic ramous?, one or

two on right side of pelvis eliac bone. Forgive any misspelled words, I was

dictating by phone and I don't know doctor lingual. Dr. Myers said the cancer

can be attacked and killed in the bone. To be successful though, He will have to

go back to the HRT therapy which previously knocked him down in many ways but

will be trying a different one (Casodex) that we can stop if it gets too bad. So

treatment to start for 3 months is Casodex and Avodart/Finesteride along with a

low dose estrogen patch to try and alleviate some of the discomfort caused by

the hrt therapy and to minimize breast enlargement which has already begun. Down

the line possible breast reduction / Next Elgie's triglycerides and cholesterol

are making him at extremely high risk for a heart attack. Triglycerides are 597,

cholesterol total 256, non-hdl cholesterol 170, ldl 89, ldl-p 1746, hdl-p 61.8,

small Ldl-p 878, ldl Size 19.6, lp-ir Score 48, ldl cholesterol Calc

tryglyceride result indicated is too high for an accurate ldl cholesterol

estimation, C-reactive Protien 3.18, Hemoglobin A1c 5.2, Prostate specific ag.

serum 0.1, Dihydro testosterone 1.2, Testosterone Free+total lc/ms 17.0, Free

Testosterone (direct) 0.5

To treat the cholesterol problem/ Crestar & Ubigquinol to help alleviate any

possible side effects of the Crestar

Lastly we will have to go to Sarasota Florida for 5 days a week for 8 weeks of

Radiation treatment in 3 months from the HRT.

May 16, 2012 - After consult with Dr. today. Elgie very depressed.

Understandably so. I'm hopeful he will regroup and bounce back to fight this

disease another day.