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Recently diagnosed with Gleason score of 9

SV
Posts: 124
Joined: Sep 2010

My biopsy last week revealed a few fives and sixes but the ugliest was a score of 9. The strange thing though is my PSA score of 5 about six months ago. Because of the high Gleason score, my urologist suggested the DaVinci surgery and a second opinion. After numerous recommendations and a consultation with Dr. Kawachi at City of Hope we agreed to his soonest surgery date of October 28 2010. When asking him about diets and so forth, along with the suggestions of garlic, tofu, cooked tomatoes, yogurt and so forth, the seemed to emphasize staying slim and active.

I am 58 year old recently retired competing athlete so I am in great physical shape and well aware of the powers of positive thought. Something else interesting is Dr Kawachi pointing to my girlfriend and saying that she is my best weapon. There is no disagreement there as she has not flinched for one second when it came to standing by my side to beat this disease. She also subscribes to the notion, if you can believe it, you can achieve it.

So far, I only know of the horror stories posted on the internet regarding the outcome of Gleason 9 cases and how there is not much to look forward to after surgery. It is my belief that in due time, I will return to a fully functioning man only minus semen. Is there any positive stories out there to support this possibility?

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VascodaGama
Posts: 3320
Joined: Nov 2010

The average timings in testosterone flare lasts for about one week till the pituitary stops sending fabrication requests to the testis. The accumulated testosterone in the body will then start to vanish getting into chemical castration level of <50 ng/dL, at 28 days on average. The PSA would decrease also accompanying the decrease of the testosterone. This seems to fit your scheduled scan. In any case, I believe that the present PSA of 2.0 would not lower to such a level rendering the scan unpractical.

Sincerely Amigo SV, you have started this chapter of your PCa affair with a doctor that seems to like doing things based on his experience or just by guessing. I cannot judge his oncologic skills but I can say that he could have tried lowering the number of items taken by guessing, if he has demanded those blood tests before the shot. You would today be certain about the levels of testosterone circulating in your body. The same goes for the colonoscopy to try verifying if you got ulcerative colitis. If existent, the radiation could affect your future quality of life very much. In your shoes I would be more inquisitive and demanding. Get a colonoscopy before RT and a full blood and lipid panel tests.

VG

SV
Posts: 124
Joined: Sep 2010

While I was at City of Hope their lab took blood and gave the following resuts

Testosterone, Total Serum 688.3 ng/dL 241.0 to 827.0 ng/dL241.0 - 827.0 ng/dL
Prostate Specific Antigen (Total), Blood 1.916 ng/mL <=3.1 ng/mL<=3.1 ng/mL
Protein Total, Blood 7.1 g/dL 6.3 to 8.2 g/dL6.3 - 8.2 g/dL
Albumin Level, Blood 4.2 g/dL 3.5 to 5.0 g/dL3.5 - 5.0 g/dL
Calcium Level, Blood 9.6 mg/dL 8.6 to 10.2 mg/dL8.6 - 10.2 mg/dL
Bilirubin Total, Blood 0.7 mg/dL 0.2 to 1.3 mg/dL0.2 - 1.3 mg/dL
Alkaline Phosphatase Level, Blood 69 IU/L 38 - 126 IU/L38 - 126 IU/L
SGPT (ALT) 21 IU/L 7 to 56 IU/L7 - 56 IU/L
SGOT (AST) 21 U/L 15 to 46 U/L15 - 46 U/L
Sodium Level, Blood 138 mmol/L 137 to 145 mmol/L137 - 145 mmol/L
Potassium Level, Blood 4.3 mmol/L 3.5 to 5.1 mmol/L>3.5-<5.1 mmol/L
Chloride Level, Blood 99 mmol/L 98 to 107 mmol/L98 - 107 mmol/L
Carbon Dioxide Level, Blood 28 mmol/L 22 to 30 mmol/L22 - 30 mmol/L
Glucose Level (Random), Blood 94 mg/dL 80 to 128 mg/dL80 - 128 mg/dL
Blood Urea Nitrogen Level, Blood 25 mg/dL 7 to 25 mg/dL7 - 25 mg/dL
Creatinine Level, Blood 1.21 mg/dL 0.7 - 1.3 mg/dL0.7 - 1.3 mg/dL
eGFR Except African American >=60 mL/min/1.73 sq M >=60 mL/min/1.73 sq M>=60 mL/min/1.73 sq M
WBC 8.6 K/uL 3.6 to 10.1 K/uL3.6 - 10.1 K/uL
RBC Count 4.73 M/UL 4.01 to 5.29 M/UL4.01 - 5.29 M/UL
Hemoglobin, Whole Blood 15.5 g/dL 12.8 to 16.1 g/dL12.8 - 16.1 g/dL
Hematocrit, Whole Blood 46.5 % 37.6 to 47.2 %37.6 - 47.2 %
Platelet Count 197 K/uL 150 to 350 K/uL150 - 350 K/uL
MCV 98.4 fL 83.3 to 97.0 fL83.3 - 97.0 fL
MCH 32.7 pg 27.4 to 33.0 pg27.4 - 33.0 pg
MCHC 33.2 g/dL 32.8 to 35.0 g/dL32.8 - 35.0 g/dL
RDW 13.9 % 12.5 to 15.0 %12.5 - 15.0 %
MPV 7.7 fL 7.1 to 11.2 fL7.1 - 11.2 fL
Segmented Neutrophil 70.2 % 42.5 to 78.2 %42.5 - 78.2 %
Lymphocyte 17.6 % 11.9 to 46.0 %11.9 - 46.0 %
Monocyte 8.4 % 5.0 to 15.3 %5.0 - 15.3 %
Eosinophil 3.3 % 0.7 to 7.2 %0.7 - 7.2 %
Basophil 0.5 % 0.2 to 1.6 %0.2 - 1.6 %
Segmented Neutrophil Absolute 6.0 K/uL 1.9 to 6.0 K/uL1.9 - 6.0 K/uL
Lymphocyte Absolute 1.5 K/uL 0.5 to 3.3 K/uL0.5 - 3.3 K/uL
Monocyte Absolute 0.7 K/uL 0.3 to 0.9 K/uL0.3 - 0.9 K/uL
Eosinophil Absolute 0.3 K/uL <=0.6 K/uL<=0.6 K/uL
Basophil Absolute 0.0 K/uL <=0.1 K/uL<=0.1 K/uL
Remisol Manual Diff Reflex  

The doctor at City of Hope is not my primary doctor who made the original error when switichig testing types. When I checked my results online two weeks ago I noticed the PSA rise and I went to COH immediately. I think what alarmed the doctors at COH was the rise from .1 to 2.0 in less than 18 months. Is that an unusual rise in that time frame? They have scheduled me for an oncology consultation a few days after the PET scan

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VascodaGama
Posts: 3320
Joined: Nov 2010

I am very glad for knowing that the hospital took the initiative in doing the blood work, probably before the Lupron shot. These results will serve you as basic data when judging the progress of treatment, verifying its effects on your other health factors. By experience, the hormonal treatment leads to cardiovascular issues (HBP) which then causes deterioration of kidney's filtration function. I calculated your eGFR as 70 mL/min/1.73 therefore bigger than >60.0, which is very good if maintained. The items in the blood count are the values to check 6 months after the radiation treatment. These can tell you if the immune system has been affected.

The rise of the PSA from 0.1 to 2.0 in 18 months could be expected in RP recurrence cases of Gs9 patients as it represents a doubling of 3 months (PSAdt=3 month). However, such surge is not usual in cases of recurrence after 9 years of remission (your situation). In any case, one should not dismiss the possibility in other causes that could have influenced remission along the 9 years; For instance, taking supplements that incorporate hormonal substances or even a life style free from stress. Surely the assays used in the PSA tests and the laboratories could commit errors too but not all tests along the 9 years.

I hope you like the team of doctors you will meet in your next consultation. It should include a radiotherapist willing to answer your doubts. Tell them that you want a colonoscopy before the SRT and ask for the details (preparedness) before, during and after the treatment.

Best wishes,

VG 

SV
Posts: 124
Joined: Sep 2010

Well...after five years with .1 I assumed that I was cancer-free forever and went on Testosterone (TRT). I was a competitive athlete training hard the entire time and never felt better in my entire life until seeing the recent PSA rise. Doctor at COH commented that had I not done that I would not be in this position now. Anyways it is what it is. After the PET scan I will find the best prostate cancer hospital in the US and travel to them for a second opinion. I've heard that Sloan-Kettering is the best. Anyone else have recommendations?

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VascodaGama
Posts: 3320
Joined: Nov 2010

SV,

I do not agree with the COH doctor's comment regarding TRT but I am not a doctor to go against his principles. As far as I know from my researches on the subject, there is no proving that TRT affects or causes cancer directly. In fact the body reacts differently depending on the origins of the testosterone. Exogenous testosterone (injected) seems to have little influence in cancer behavior but it reflects in stimulating energy (muscle tissues). The  endogenous testosterone (produced by the testis) is behind cancer activity but not initiation, and from your resent blood test we know that you got alot of the stuff (T=688.3 ng/dL) circulating in the body. In other words, I believe that the prostatectomy of 2010 did not free you from the whole cancer, leaving behind some cancerous cells that were dormant along the years or under control by the immune system. These may have been awakened by a stressful moment in your life (weakened immune system), and later becoming more active when it started enjoying those testosterone cocktails plenty available in you.

I think that you doing well in getting a consultation at a top hospital. You can latter get treated at a close hospital to your home. However, I recommend you to get those test and exams done firstly so that you can bring along the results to the consultation, together with the resume of your PCa history (copy of RP pathological report from COH). It will help in receiving the best opinion from the attending doctor. Apart from SKCC, JH, Mayo, MD Anderson, etc are also named in this forum as being good.

Best wishes,

VGama

   

Clevelandguy
Posts: 658
Joined: Jun 2015

Hi Sv,

I know that my regular Internal Medicine doctor goes over with me the different values on my blood test. He knows which ones effects which organ to give an indicator of what's going on.  Might want to take your blood work results to an Internal Medicine doc so he can read and discuss with you.  The blood test results might point to a certain area or organ that you might want to look into further along with your PET scan.  Just a thought...............

Dave 3+4

SV
Posts: 124
Joined: Sep 2010

I had the PET scan last Tuesday and met with radiation oncologist Friday for the results. The good news is that they found the lesion in the seminal vesicles and nowhere else so it's treatable with radiation. The doctor wants to do the typical five days a week for two months program with more energy focussed on the seminal vesicles. However he also wants me to continue on Lupron for perhaps two more years to be sure any remaining cells are dealt with. I explained that further Lupron treatment was not an option for me and that I am headed to Sloan Kettering and MD Anderson for a second and third opinion. Since time is of the essence and it takes three weeks to even get started, we agreed that I should initiate the radiation process now.

The doctor was understanding of my desire for second opinions but also said that he was certain that both of those hospitals would recommend the same treatment. Radiation I can deal with but no more Lupron for me. What do you guys think?

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VascodaGama
Posts: 3320
Joined: Nov 2010

SV,

I wonder on the purposes of the second opinion at the Sloan Kettering and MD Anderson if you have already agreed and have started the treatment. Are you still undecided? What are the purposes of those consultations?
I think you should have kept your original plan and start the treatment after the consultations. After all, delaying the radiotherapy one or two month would not alter the outcomes.

The results of the PET made me curious for the detection of malignancy at the tips of the seminal vesicles that were not dissected by the surgeon. This was an unfortunate erroneous decision during the surgery of 2010. Before DaVinci, prostatectomies would dissect the whole prostate gland together with the seminal vesicles and localized lymph nodes. But robot surgeries done during the first decade of 2000, followed a different principle, leaving the tips of the seminal vesicles untouched to help in faster recovery from ED issues and incontinence. Those VS tips are connected to the nerve bundle (prostatic plexus) and usually are dissected when the case involves high Gleason grade 9 (4+5) added to numerous positive cores found in the biopsy. This was your case in 2009.

I hope you manage this time to blow out the bandit for good.

Best wishes and luck in this journey.

VG

SV
Posts: 124
Joined: Sep 2010

I'm assumomg that radiation will be the standard recommendation however I do not want to continue on Lupron. I was hoping that the other doctors would have a different solution. I still don't understand why Lupron is necessary after radiation.

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VascodaGama
Posts: 3320
Joined: Nov 2010

 

V

Some clinics follow their own protocol. RT+Lupron combination is usually administered in two years in guys with Gs9. However I think it too long. Six to twelve months may be enough. In any case, you can do the radiation without Lupron. SRT is the one that can kill the bandit. Lupron helps to improve the blow given by the radiation. You can negate the hormonal treatment but you need to discuss the matter with the RO before the treatment.

Apart from that, there are other methods of radiation from what to choose. Have you started the markings/tattoo and CT scan?

Advance with the treatment only after being comfortable. What is the rush?

VG

SV
Posts: 124
Joined: Sep 2010

I don't even have an appointment with radiologist yet but was told by the end of the week they wouild schedule making a mold that would happen soon after. Actual radiation would begin around end of February. No menton of colonoscopy yet.

What other types of radiation are possible?

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VascodaGama
Posts: 3320
Joined: Nov 2010

Can you tell us who is leading/assisting you at COH?

Is it a clerk or a doctor? Are you seeing a specialist ?

COH performs various types of radiotherapy. You can call them to inquire. Read this;

https://www.cityofhope.org/patients/departments-and-services/radiation-oncology/radiation-oncology-technologies

SV
Posts: 124
Joined: Sep 2010

Study Result

 
HISTORY: 67-year-old with m chemotherapy recurrent prostate carcinoma
 
FULL RESULT: Prior exam: None.
TECHNIQUE: Following intravenous injection of 10.8 mCi of F-18 fluciclovine and a 3 minute uptake period, multi-bed station 3-D PET and low resolution axial CT image acquisition was performed in a dedicated PET/CT scanner to include the skull vertex to the proximal thighs. Multiplanar PET and CT reconstructions were performed. The CT images were utilized for attenuation correction and localization purposes. CT images were fused with the corresponding PET images.
 
FINDINGS:
NORMAL PHYSIOLOGIC FINDINGS: There is normal physiologic activity in the liver, pancreas, salivary glands, and patchy physiologic uptake within the skeletal muscles.
 
ONCOLOGIC AND POTENTIALLY ONCOLOGIC FINDINGS: There has been previous prostatectomy. There is minimal to mild F-18 fluciclovine uptake within the region of the former right seminal vesicles with a maximum SUV of 4.2 and a 25 x 10 mm soft tissue focus in the region (image #232).
No other abnormal F-18 fluciclovine avid lesions are identified.
No pulmonary nodules, infiltrates, or pleural effusion is identified.
There is a subthreshold rim sclerotic lucent lesion in the left iliac crest measuring 17 x 11 mm (image #203). No other abnormal bone lesions are seen on the PET or CT portions of the exam.
There is question of subtle lucent lesions in the liver.
NONONCOLOGIC FINDINGS: There are several bilateral renal calculi, some of which resides in the both renal pelves. The largest measures 20 x 9 mm in the left renal pelvis (image #156).
There is extensive sigmoid diverticulosis.
Non-F-18 fluciclovine avid calcifications are noted in the anterior mediastinum which are presumably benign but are of unclear etiology.
Reference values:
L3 vertebral body activity: 2.9
Mediastinal blood pool activity: 2.0
 
IMPRESSION:
1. Minimal to mild F-18 fluciclovine avid soft tissue lesion in the region of the right seminal vesicles suggesting local recurrence of the patient's known prostate carcinoma.
2. Subthreshold rim sclerotic lucent lesion in the left iliac crest which is presumably benign.
3. Question of subtle lucent lesions in the liver. Suggest diagnostic pre and postcontrast CT scans of the abdomen and pelvis.
4. Several bilateral renal calculi with the largest measuring 20 x 9 mm (central portion of left kidney).
 
SV
Posts: 124
Joined: Sep 2010

I have never had chemo but the report indicates that I have. Did I misread this? I wonder if their method of treatment would be different if I had never had chemo.

Dr Scott Glasser was the radiation oncologist who I spoke with along with another doctor under him.

Dr. Cy Stein was the first prostate cancer specialist who I intitially saw. He ordered the Lupron shot three weeks ago.

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VascodaGama
Posts: 3320
Joined: Nov 2010

Amigo SV,

Sincerely I am puzzled with your late inquires on matters that you have already discussed, accepted and are following at COH. I think you know the answers to your questions but insist in discussing them again. Are you trying to verify if we agree with your choice? Nobody here would go against your decisions. We all believe that you did well. In any case, it would be nice and helpful to the newbies reading your story if you describe the details of the therapy's protocol and the reason for its choice.

I hope you get cured and manage to maintain an acceptable quality of life.

Best,

VG

SV
Posts: 124
Joined: Sep 2010

I apologize for the confusion and lack of clarity on my part. When meeting with the COH radiologist he only showed me the image of where the new cancer is located and then abruptly said that I need radiation for two months followed by up to two years of Lupron which I thought was excessive. (I think you thought so too.) I really don't want to ever take a Lupron shot again. And when I said that I'd also seek a second opinion he was okay with that but suggested that in the meantime I sign up for the radiation treatment as he recommended because it would take at least a month before anything got started. And while waiting for that I had time for that second opinion. He said that I had at least a month to change my mind about getting radiation at COH.

My concern regarding that PET scan report and other information the COH radiologist reviewed is that it may be incorrect and possibly the reason for the additional time on Lupron. At the top of the PET scan report it mentions chemo as though I've already had that--but I've never had chemo. Also my initial biopsy was a Gleason 9 but post surgical biopsy changed to Gs7 4+3. Because over the years I've often seen mistakes in medical reports I want to have fresh eyes on my case to see if the situation warrants further Lupron.

This morning I made an appointment at MD Anderson for March 20 and also requested to be placed on a wait-list for an earlier appointment with any other of their Genitourinary medical oncology doctors. My guess is that I can get an appointment in the next few weeks. Either way I'll delay/postpone starting radiation a COH until a second opinion is provided by doctors at MD Anderson.

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VascodaGama
Posts: 3320
Joined: Nov 2010

SV,

You do not need to apologize. The situation is stressful and the influence of the Lupron may be powering you off. Apart from that the guys at COH have not been nice for not providing you the details. I think you should inquire them on your doubts and continue the matter when you feel comfortable with the answers. I am surprised for the coercive way the radiotherapist used to influence an agreement.

Please note that we in this forum are not doctors. We are survivors like you and try helping each other with comments based on own experience. You need to find a doctor that you trust and give you confidence. I hope you manage to get that feeling in your next consultation at MD Anderson. Again, I recommend you to take along the copies of all exams and tests, including those from the surgery occasion.
A list of question will also be helpful when meeting the specialists. Lay down all the items you do not understand or want to know, even if these seem awkward inquiring.

Regarding your above posts, I think that the description on “chemotherapy” in the PET report is a clerk error if you had not such a treatment. They may have wanted to type that you were under the effects of the Lupron, which is due as it may influence the results of the PET scan as seen by the radiologist. However, it was Dr. Cy that wrote your “Patient Record” in your hospital’s file and it could have a meaning. You can inquire calling them.

In any case, the comment in the PET report may not interfere with the proposed salvage treatment combining SRT+ADT. I would expect that both doctors (Cy, medical oncologist, and Scott, radiotherapist) are following the hospital’ directive in their practice. I have seen similar guys posting similar protocols used at other institutions. Typically, these hospitals follow the general NCCN guidelines where it is recommended full radiation protocol with ADT (Lupron alone or added to Bicalutamide), which can last two to three years in patients considered as high risk. NCCN considers recurrence cases in Gleason rates of 4 and 5 (scores of 7, 8 and 9) as high and very high risk.

Here is a link of the Guidelines;
https://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=666

However, in some other institutions they follow the same principle in combination therapy but drastically reduce the time of ADT to six months, to fit the particulars of the patient. I see it as friendlier and appropriate because I believe that recurrences from RT or RP do not become systemic cases unless if far metastases have been detected.
This is what you have indicated here. The PET has been negative to metastases in bone, identifying only neoplasia at the tips of the seminal vesicles (prostatic fossa). Radiating this area may free you from the bandit for good.

In my lay opinion you may substitute Lupron with Firmagon as this drug achieves the same principles of Lupron but is friendlier in terms of the side effects. You could also have the treatment using radiotherapy alone. You should discuss your wishes with the radiologist. You can inquire about the purposes of each therapy and about the expected results from each approach. Surely the process is different and will affect you more if the combi is chosen. I hope that guys here explain about their experience with SRT plus ADT.
In regards to the radiotherapy, I do not understand what has been proposed to you. Treatments involving five days a week for two months are the typical IMRT or Proton Beam but casting described in your above post is usually done in Proton treatments when the whole prostate gland is in place. I never heard about such practice in salvage therapies for RP guys.

I wonder the dose of your Lupron shot. It may be playing tricks on you already. You may be experiencing menaupose like symptoms. Fatigue, hot flashes, mood changes and impaired recognition are all a bad experience. These will vanish about two months after the end of the effectiveness of the shot.

Hung in there, friend.

Best wishes.

VGama

 

Josephg
Posts: 272
Joined: Jan 2013

I agree with Vasco, in that you need to feel confident and comfortable with your medical professionals, and to be able to talk freely with them, and receive understandable and complete answers to your questions.  If this cannot be achieved with your current medical professionals, then I recommend (as a non-medical layperson) that you search for and engage new ones.  There is enough stress and uncertainty related to the PCa treatments themselves, that you do not need any additional relationship-related stress with you medical professionals.

Also, when I received my salvage radiation treatments, there was no casting/mold involved, and I was on a combination Lupron and Casodex hormone therapy for only 6 months, starting one month before the radiation treatments.

I with you success on your PCa journey.

eonore
Posts: 103
Joined: Jun 2017

SV,

My recurrence was treated at Dana Farber.  I received six months of hormone therapy (Lupron and Casodex), along with eight weeks of radiation. So far so good.  The hormone therapy potentiates the radiation by weakening the cancer making it more susceptible to the effects of the radiation. I agree the Lupron sucks, it knocked the shirt out of me.  However, I think it would be foolish not to follow your Doctor's recommendation. You want to hit this thing as hard as you can with every weapon at your disposal.  Don't let your feelings about the Lupron drive your decision making at this juncture.  Your primary concern has to be a cure.

Also, I did have a mold made for my radiation, if you could call it that.  It was basically kind of a memory foam thing along with some blocks and a rolled up towel under the small of my back to get me angled just right.

SV
Posts: 124
Joined: Sep 2010

Thanks guys. I'm definitely experiencing side effects of disorientation to the point of often not knowing what day it is and a few stomach and headaches. Because I'm also recovering from two surgeries from six weeks ago I'm limited to only walking a few miles a day. I'll return to the gym next week. Currently at the four week mark since Lupron shot but still able to have sexual intercourse without orgasm--all with the help of Vitamin V.

Looking forward to second opinion at MD Anderson. Currently on a wait list to bump my appointment up from 3/20/2020

SV
Posts: 124
Joined: Sep 2010

I've been on Lupron now for five weeks and had my PSA and testostereone tested yesterday:

1/7/20 2/14/20  
Free PSA
ng/mL
  <0.005  
FREE TOTAL PSA %      
Total PSA
<=3.101 ng/mL
1.950 0.180

 This chart copied and pasted does not appear clear but basically my PSA 1/7/20 was 1.95 and now it is 0.18

VascodaGama's picture
VascodaGama
Posts: 3320
Joined: Nov 2010

SV,

The decrease of the PSA is good news. This value has a meaning but without the results of the testosterone I can't opinion. What is the value?

I also need to know the specifics of the shot. What was the dose of the Lupron administered 5 weeks ago? Was it one month shot?

The free PSA test is insignificant as a marker in a guy without the prostate gland. Why is your GP requesting this test?

Georges Calvez
Posts: 503
Joined: Sep 2018

Hi there,

Five weeks in and your testosterone should be subcastrate, it will be in 95% of men, your PSA is declining fast which is what a doctor would expect.
You are not below the limit of detection which some men hit very quickly but I would expect that you will hit this before the three month point.
Any idea how long you will be staying on the stuff?

Best wishes,

Georges

SV
Posts: 124
Joined: Sep 2010

The oncology radiologist recommend two months of radiation followed by two years of Lupron. I think this is excessive and might agree to one more 90 shot.

SV
Posts: 124
Joined: Sep 2010

I had the blood test done last Friday afternoon and was able to read that PSA result online Saturday morning. Testosterone results take longer but I'm guessing that it's going to be low by now. The Lupron shot was the three-month type.

Still walking three miles a day but the last four days I've been passing a kidney stone, so significant pain comes and goes. ER Dr gave me some Percocet and said it will pass. He wanted to do a CAT scan but in the current situation I wanted to consult my oncologist first. Oncologist said radiation from another CAT scan was the least of my problems and to go ahead with it. Now I have to wait for the three-day holiday to end.

This last blood test was not ordered by doctors at City of Hope.

Gforce
Posts: 21
Joined: Jan 2020

I had a 3 mo shot of Lupron after my 1 mo shot. I have to say it was not as effective. My 3 month shot was given in the beginning of Nov 2019, and blood work was done end of Dec 2019. My T was up to 115 and PSA rose accordingly 5.2. In Jan 2020 I got a 1 mo shot of Trelstar and it crashed my PSA immediatley to 19 and PSA down to 3.5. My medical oncologist said the one month shot is more potent. I go in for my final shot on 2/26 and it will be a one month shot. I am now 22 days into 40 treatments of Proton and all is well. 

SV
Posts: 124
Joined: Sep 2010

I just now received testosteron blood test results online.

Testosterone, Free, S0.57 ng/dL

Testosterone, Total, S52 ng/dL

This was at the five week mark on Lupron--same date as the most recent PSA result listed above. Assuming this is good news?

 

VascodaGama's picture
VascodaGama
Posts: 3320
Joined: Nov 2010

SV,

This is a great decrease from 688 to 52 ng/dL, in just 5 weeks. It will decrease further to castration levels (Lower than 20) by the time you get the second shot. T=52 is the level investigators use in their clinical trials, but oncologists use lower levels in treatments. For those that use ADT as prime therapy (my case) the level must reach still lower (<10 ng/dL) to warrant a free period without drugs (intermittent approach). The decrease signifies that the existing cancerous cells are hormone dependent and would respond well to hormonal manipulations if ever you need to follow ADT. In my lay opinion this may signify that your cancer is not highly aggressive for a Gleason rate of 5.

The PSA accompanied the decrease of the testosterone and it will go down further which could justify a postponement of the radiation therapy if you decide to pursue ADT, continuing the hormonal shots. I understand your aversion for Lupron and your wish to diminish the two years period proposed at COH. I think that these results can be taken into consideration for them to limit the hormonal portion to a six month period. I hope you manage to convince them into an agreement.

Let us know the results from your next meeting at MD Anderson.

Best wishes

VG

SV
Posts: 124
Joined: Sep 2010

Just received a call from MD Anderson saying that they moved my appointment forward from March 20 to March 3. They requested that I stay out there 3-5 days for anticipated further testing. Great news!

Georges Calvez
Posts: 503
Joined: Sep 2018

Hi there,

To me your testosterone sounds a bit higher than some urologists would like.
I would not be surprised if they give you a couple of shots of Firmagon when you get out there and then test you a few days later.
Firmagon causes a rapid crash in testosterone levels so you would go below 20ng/dL in a few days.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3668394/

Best wishes,

Georges

SV
Posts: 124
Joined: Sep 2010

Today marks six weeks on Lupron:

Testosterone, Total Serum20 ng/dL

Prostate Specific Antigen (Total), Blood0.076 ng/mL

 

Protein Total, Blood 6.7 g/dL 6.3 to 8.2 g/dL6.3 - 8.2 g/dL
Albumin Level, Blood 4.1 g/dL 3.5 to 5.0 g/dL3.5 - 5.0 g/dL
Calcium Level, Blood 9.9 mg/dL 8.6 to 10.2 mg/dL8.6 - 10.2 mg/dL
Bilirubin Total, Blood 0.4 mg/dl 0.2 to 1.3 mg/dl0.2 - 1.3 mg/dl
Alkaline Phosphatase Level, Blood 77 U/L 38 - 126 U/L38 - 126 U/L
SGPT (ALT) 19 U/L 7 to 56 U/L7 - 56 U/L
SGOT (AST) 18 U/L 15 to 46 U/L15 - 46 U/L
Sodium Level, Blood 140 mmol/L 137 to 145 mmol/L137 - 145 mmol/L
Potassium Level, Blood 4.9 mmol/L 3.5 to 5.1 mmol/L>3.5-<5.1 mmol/L
Chloride Level, Blood 102 mmol/L 98 to 107 mmol/L98 - 107 mmol/L
Carbon Dioxide Level, Blood 27 mmol/L 22 to 30 mmol/L22 - 30 mmol/L
Glucose Level (Random), Blood 102 mg/dL 80 to 128 mg/dL80 - 128 mg/dL
Blood Urea Nitrogen Level, Blood 43 mg/dL 7 to 25 mg/dL7 - 25 mg/dL
Creatinine Level, Blood 1.84 mg/dL 0.7 - 1.3 mg/dL0.7 - 1.3 mg/dL
eGFR Except African American 37 mL/min/1.73 sq M >=60 mL/min/1.73 sq M>=60 mL/min/1.73 sq M
Results using the MDRD study equation have not been validated for use with patients under 18 and over 70 years of age, pregnant women, patients with serious comorbid conditions, or persons with extremes of body size, muscle mass, or nutritional status.
Chronic Kidney Disease <60 mL/min/1.73sq M
Kidney Failure <15 mL/min/1.73sq M
eGFR African American 45 mL/min/1.73 sq M >=60 mL/min/1.73 sq M>=60 mL/min/1.73 sq M
Results using the MDRD study equation have not been validated for use with patients under 18 and over 70 years of age, pregnant women, patients with serious comorbid conditions, or persons with extremes of body size, muscle mass, or nutritional status.
Chronic Kidney Disease <60 mL/min/1.73sq M
Kidney Failure <15 mL/min/1.73sq M
Anion Gap, Blood 11 8 to 14 8 - 14
Albumin / Globulin Ratio 1.6 1.1 to 2.1 1.1 - 2.1
WBC 6.3 K/uL 3.6 to 10.1 K/uL3.6 - 10.1 K/uL
RBC Count 4.41 M/uL 4.01 to 5.29 M/uL4.01 - 5.29 M/uL
Hemoglobin, Whole Blood 14.1 g/dL 12.8 to 16.1 g/dL12.8 - 16.1 g/dL
Hematocrit, Whole Blood 42.4 % 37.6 to 47.2 %37.6 - 47.2 %
Platelet Count 236 K/uL 150 to 350 K/uL150 - 350 K/uL
MCV 96.2 fL 83.3 to 97.0 fL83.3 - 97.0 fL
MCH 32.1 pG 27.4 to 33.0 pG27.4 - 33.0 pG
MCHC 33.4 G/dL 32.8 to 35.0 G/dL32.8 - 35.0 G/dL
RDW 14.1 % 12.5 to 15.0 %12.5 - 15.0 %
MPV 7.5 fL 7.1 to 11.2 fL7.1 - 11.2 fL
Segmented Neutrophil 64.8 % 42.5 to 78.2 %42.5 - 78.2 %
Lymphocyte 24.7 % 11.9 to 46.0 %11.9 - 46.0 %
Monocyte 7.1 % 5.0 to 15.3 %5.0 - 15.3 %
Eosinophil 2.6 % 0.7 to 7.2 %0.7 - 7.2 %
Basophil 0.8 % 0.2 to 1.6 %0.2 - 1.6 %
Segmented Neutrophil Absolute 4.0 K/uL 1.9 to 6.0 K/uL1.9 - 6.0 K/uL
Lymphocyte Absolute 1.5 K/uL 0.5 to 3.3 K/uL0.5 - 3.3 K/uL
Monocyte Absolute 0.4 K/uL 0.3 to 0.9 K/uL0.3 - 0.9 K/uL
Eosinophil Absolute 0.2 K/uL <=0.6 K/uL<=0.6 K/uL
Basophil Absolute 0.0 K/uL <=0.1 K/uL<=0.1 K/uL

What does this all mean?

Georges Calvez
Posts: 503
Joined: Sep 2018

Hi there,

That is good, your testosterone is now in the range that PCa specialists like and your PSA is continuing to fall, give it another month or so and you should be below the level of detection.
Interestingly your blood urea and eGFR are out of the normal range, you can ask your doctors about this when you see them.
They love intelligent probing questions! :-)

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3320
Joined: Nov 2010

Amigo SV,

Georges is right, you need to consult a nephrologist as the parameters regarding the kidneys are all out of the normal range. I am not a doctor but the results above are indicative of a possible case of chronic kidney disease CKD.
Back in 2017, I was caught with CKD stage 3 (Stage 4 requires dialyses) for the results of eGFR= 39.2 (yours is worse at 37 mL/min/1.73 sq M), Creatinine =1.65 (yours is worse at 1.84 mg/dL) and Blood Urea Nitrogen = 24.3 (yours is worse at 43 mg/dL). Other influential data regards Albumin and the items of an Ionogram. My kidneys work at 40%. A level of 35% is critical and with 30% I would need dialyses. CKD prohibits the use of contrast agents in CT scans. You should inform about your creatinine level to the radiologist.
To confirm your above situation you will have to test the urine of 24 Hours. Get informed and see a doctor. 

In accordance with my nephrologist, the cause for my CKD was uncontrolled HBP and the hormonal imbalance when on ADT. He said that my diet seem OK. The problem is that I can't retrocede the situation but I can control it from further deterioration via a controlled blood pressure and diet. You can read my story in this link;

https://csn.cancer.org/node/307433

Best wishes,

VGama 

SV
Posts: 124
Joined: Sep 2010

test

VascodaGama's picture
VascodaGama
Posts: 3320
Joined: Nov 2010

SV,

I received by mail the test results that you may have wanted to post above. Some of the values related to kidney function are slightly different from the previous tests of Feb 26, but the new ones also indicate problems in kidneys' function. In fact they write that you got stage 3 for the eGFR-AA= 61mL/min/1.73 sq. m, and eGFR-NAA= 53 mL/min/1.73 sq.m.

In your shoes I would get the filtration rate from a 24 hours urine sample. The calculation of the ratio would provide a more reliable result. I am surprised that the nephrologist you consulted in California did not suggest that test in view of your probably involvement with nephrotoxic substances required in PCa matters. The BUN of 33 mg/dL is again high (normal range is 6 to 23 mg/dL) but the ionogram items are stable. As commented before, I advise you to inform the doctors attending you about your creatinine and eGFR results. I wonder about your blood pressure. Are you testing it?

The good news from the tests is the lower PSA now at 0.1 ng/ml, and the testosterone that reached chemical castration of <33 ng/dL. Thought your cholesterol is very high at 248 mg/dL. You may try to improve it via a fitness program or take pills.

Please read these;

https://www.ncbi.nlm.nih.gov/pubmed/19368492

https://www.healthline.com/health/kidney-function-tests

Regarding the proposed two months of Proton at MDA, I think it to be a valid salvage therapy. Surely the guys at Loma Linda also have years of experience in radiation therapy for prostate cancer. MDA may require you to travel everyday however the best is to choose the one that gives you more confidence. Get the opinion of your family.

Please note that I am not a doctor. You should get advice and second opinions from professionals.

Best wishes,

VGama

 

SV
Posts: 124
Joined: Sep 2010
Testosterone, Total Serum 9 ng/dL 87 to 780 ng/dL87 - 780 ng/dL
Prostate Specific Antigen (Total), Blood <0.008 ng/mL <=3.1 ng/mL<=3.1 ng/mL

 

SV
Posts: 124
Joined: Sep 2010

After consulting doctors at City of Hope, MD Anderson Cancer Center, Loma Linda Mayo Clinic, and California Proton Center, all agreed that radiation was my only option. But they varied in approach. Here are the recommendations without naming the hospital.

1. Two months of Proton five-days a week nuking the right seminal vesicle and prostate bed with a total of one year on Lupron. (Four 90-day shots total) When I balked at more Lupron the RO said ok but then we must add daily Casodex, which I have been on for the last month with zero change in side effects ... which were almost zero from the Lupron. While I was there they performed extensive bloodwork, two followup MRIs for suspicious spots revealed on my PET Scan and genetic testing on my original prostate gland removed in 2010. California law says they must keep it for 15 years. They were incredibly thorough.

2. Two months of Proton nuking the right seminal vesicle and prostate bed with a total of six-months of Lupron (two 90-day shots) But they have a 40 year old proton machine without the latest Pencil Beam technology. A very well known RO reviewed previous test results for our TeleMed phone call. Excellent doctor.

3. Two years of Lupron with two months of Photon radiation nuking the right seminal vesicles and prostate bed. This team really dropped the ball in several critical areas by misreading my post-op biopsy Gleason score which was a 4+3=7 instead of the original pre-op Gleason 4+5=9. They never took the time to read my entire file before recommending treatment--not once but three different times in subsequent visits. Upon realizing their error they apologized profusly and said "OK let's change that to six months of Lupron." Unbelievably incompent doctors.

4. Ten days of intense Photon radiation on the right seminal vesicle only without radiating the prostate bed...But two years of Lupron to take care of any microtumors or rogue cells.

5. Two months of Proton with six months of Lupron from internationaly reknown RO (total of two ninety-day shots) In all cases Medicare covered 80% and Blue Cross supplement PPO covered the the other 20%.

Obviouosly this was quite a dilemma so I arrived at a decision by process of elimination.

eonore
Posts: 103
Joined: Jun 2017

Have any of the ROs you have consulted with discussed radiating the entire pelvis rather than just the prostate bed.  Here is a link to an article on this subject.  https://www.ascopost.com/issues/november-25-2018/adding-pelvic-node-radiation-and-hormone-therapy-to-radiation-provides-significant-benefit-in-prostate-ca/

Eric

SV
Posts: 124
Joined: Sep 2010

Interesting article. Thanks amigo.

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VascodaGama
Posts: 3320
Joined: Nov 2010

T=9ng/dL means you are in chemical castration. Congratulations.

It also means that the cancer is hormone dependent which could represent a long period of control on the advancement of the disease. Surely you have plenty of time to research on the details of the treatments and chose the one giving you the highest confidence.

You are an experienced adventure and you may take this as another of your journeys.

Best wishes.

VG  

SV
Posts: 124
Joined: Sep 2010

Thanks amigo. Any opinions on Proton?

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VascodaGama
Posts: 3320
Joined: Nov 2010

Amigo SV (G)

I read the results of your genetic test and was surprised for the simplicity used in reporting the findings. I was expecting that genetic tests today would be more specific and with more definite answers to prediction, treatment failure and hereditary consequences. I wonder if all genetic laboratories report the same or if this simplicity pertains only to the gene PIK3CA found and described in your biochemistry report. They have tested 324 genes and the introns of 36 genes (segments of a DNA) but little is mention in regards to prostate cancer and I wonder why they used your gland specimen to check consequences in breast and other cancers. One could think that they have not elaborate much about prostate cancer because they did not detect the genes that identify worse cases of PCa.

I hope your medical oncologist (in May’s visit) gives you more details and describes the benefits not listed in this report, In my lay opinion the worse in the report regarding the PIK3CA gene is for the low benefit you would get from chemotherapy, in case you become in need of that in the future. It seems that this gene works as a switch in cells providing these the capability in duplication (spreading) and survival. This is probably the gene targeted in Monoclonal Antibody Therapies (mabs) which has become the choice treatment for cancer since the works done by the Nobel laureates for medicine of 2018 (Dr. James P. Allison and Dr. Tasuku Honjo) for their discoveries that have led to new medicines that activate the immune system to eliminate such survival switch in cells. This is regarded as the reason behind recurrences occurring in chemo and radiation treatments. In fact they describe in the report that this gene is associated to: “… Prostate Adenocarcinoma TCGA dataset showed a significant association between PIK3CA alteration, including amplification, with decreased survival (HR=0.55), increased regional lymph node metastasis, higher primary tumor category, and higher Gleason grade  …”

In regards to your above request on proton, I just want to say that I cannot substitute you in deciding on the type of radiation and modality. In your shoes I would chose the one that gives me more confidence and peace of mind.

My SRT experience was with IMRT but it seems that the side effects and risks are equal in both Photons and Protons. The big difference is in the capability that proton treatment has in delivering high energy (Grays) to a a predefined spot (named Bragg peak) as it manages to decelerate faster than photons. The result will be a higher intensity at the entrance of the rays in our body with zero effects in tissues standing after the peak. It can be done in a lower number of sections that IMRT to reach the same level of absorbed grays. I recommend you to inquire a radiotherapist on the matter. You may also inquire if proton becomes better in guys that have such PIK3CA gene known to be influential in the outcome of RT.

May I suggest you to copy and paste the genetic report in here to get the opinion from those that did the same test.

Best wishes.

VGama

 

SV
Posts: 124
Joined: Sep 2010

I finally pulled the trigger last week deciding on Proton at California Protons in San Diego, California--which is only an hour drive from my house. I asked my RO at MDA point blank that if unable to move to Houston for treatment who would he recommend? Knowing of the above listed location possibilties he immediately recommended Dr Rossi at CP.

I went in last week for a form fitting of my hips so they can target the same area without error. Rossi said 35 treatments but no more Lupton or Casodex. Whew!

Any advice or info on Proton?

VascodaGama's picture
VascodaGama
Posts: 3320
Joined: Nov 2010

I'm glad to know that you started the treatment. I believe that they will radiate the prostate bed and probably include some lymph nodes. The total grays delivered may not be very large due to the location as it will affect the colon. You should be ready for the symptoms usually involving short of diharea. In my case it took three months to recover.

Hopefully the treatment will free you from the bandit. Without ADT your testosterone will recover in about  4 months to normal levels. You can then verify the success.

Best.

VG

VascodaGama's picture
VascodaGama
Posts: 3320
Joined: Nov 2010

I'm glad to know that you started the treatment. I believe that they will radiate the prostate bed and probably include some lymph nodes. The total grays delivered may not be very large due to the location as it will affect the colon. You should be ready for the symptoms usually involving short of diarrhea. In my case it took three months to recover.

Hopefully the treatment will free you from the bandit. Without ADT your testosterone will recover in about  4 months to normal levels. You can then verify the success.

Best.

VG

SV
Posts: 124
Joined: Sep 2010

Doctor also said that with Proton they stick a balloon up my rectum every treatment to protect it from the radiation. Is this common?

eonore
Posts: 103
Joined: Jun 2017

Just think, up until now we thought balloons were for kids' birthday parties.

Eric

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VascodaGama
Posts: 3320
Joined: Nov 2010

Procedure done with the balloon have the intent to stop (fixed)  the movement of the colon and at the same time avoid damage to the opposite/rear wall  of the colon. The area (wall) of the colon where the prostate gland used to be will be radiated.

Some radioterapists in prime RT use a sort of gel injected at the thin  local tissue that is known to protect the colon for some extent.

You can inquire if they do that in SRT procedures.

Best.

VG

SV
Posts: 124
Joined: Sep 2010

The first two weeks of Proton therapy have gone well with no apparent side effects until the last four days I've had a combination of horrible gas and acute diarreah. I've been sprinting to the bathroom a dozen times a day with frequent accidents.

Any solutions?

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VascodaGama
Posts: 3320
Joined: Nov 2010

Amigo SV,

Many guys in this forum have chosen lesser fiber diets to recover from upset bowels due to RT. However, in my case I involved diets based on soluble fiber. For instance; Black beans,  Brussels sprouts, sweet potatoes, avocados and fruits like oranges, apricots, etc. I considered my breakfast has the main meal which was a mixture composed of 100% bran (Nabisco) plus oats, dried figs, almonds and a variety of seeds, together in a bowl with unsweetened natural yogurt. A cup of strong coffee with low-fat milk.

Surely I experienced diarrhea (soft stool) but it was controllable. Your doctor can recommend you medication if changing diets doesn't improve the issue.

Best,

VG 

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