Update - month 5

[DaC00tie]

Diagnosed with metastatic prostate cancer, gleason score 7 (3/4), one femur bone, multiple lymph nodes, PSA 23.8, 30 days of bicalutamide, 3 radiation treatments on femur, then 30 days of zytiga/prednisone w/ lupron injection - PSA 0.4. 90 days later (present time) - PSA less than 0.1. Hot flashes are beginning to stabilize, they are less frequent and not as intense. My oncologist is strongly suggesting 7 weeks of radiation treatments (35) to lymph nodes. My previous concerns about my oncologist begin to resurface. It was mentioned that the radiation treatments will cause permanent and irreversible damage. When I asked him directly "can you be more specific?"....he avoided the question. I told him directly "If I am going to be in a position to make a decision about radiation treatments, I need to know what specifically the permanent and irreversible damages are going to be"...and again I asked him "what kind of damage are you talking about, I need to know." Again he avoided the question and told me that I should ask my radiation oncologist. His attitude of not answering my question gives me cause for great concern. My faith in him diminished to a new level. I no longer feel confident in having my life in his hands. In a week I have an appointment with UCSF in California with Dr. Borno. I'm very much looking forward to this appointment and depending on how the conversation goes with Dr. Borno, I'm fully prepared to transfer my treatment to the new facility.

I do have a question I would like to pose concerning new developments. I work in a very physical career outside in the environment. As a result it is not uncommon for me to experience a leg cramp in my calf at one point during the night. But, the last few days I have been experiencing calf and thigh cramps multiple times during the night, and now I'm experiencing them during the day also. The frequency of them has drastically increased. My potassium and sodium levels are in the normal range. My hydration methods are the same, plenty of water and gatorade, the same as before my diagnosis if not more. I was advised to take magnesium malate as a supplement, which had no affect. Is anybody experiencing a higher frequency of cramps, and what, if anything, is it attributed to?

[Fairwind]

MO's and RO's medical oncologists and radiation oncologists work in 2 different worlds. The reason your MO is shy about answering your radiation questions is because he does not know. Talk to your RO about your side-effect concerns...Today's radiation treatments are a far cry from what they were 20 years ago..The techniques and equipment used have improved tremendously.. You might ask about SBRT. Also known as Cyberknife. Instead of 35 treatments, they can do it in 5 or 6....

The Lupron shot is actually chemical castration. Bring the data sheet up and you will see it has a boat load of side-effects. The cramps in your leg are probably part of it...

[Drcrunch]

Please check your blood glucose level

[DaC00tie in reply to Drcrunch]

Glucose, Ser/Plas

: 128 mg/dL

standard range: 70 - 140 mg/dL

All my bloodwork values fell in the "standard range", except for white blood cell count, it was a little high which is normal under the condition.

[Drcrunch in reply to DaC00tie]

Was this a random test or did you fast

[DaC00tie in reply to Drcrunch]

I fasted, as I always do. They run my bloodwork every time I see the oncologist. Every 3 months now.

[Drcrunch in reply to DaC00tie]

The range your showing is a random test. Over 100 is going toward diabetes, as I suspected. Get with your primary doctor if 128 was fasting level

[DaC00tie in reply to Drcrunch]

My primary doctor has told me that I’m “pre” diabetes. He said “not yet but maybe in the future”.

[MichaelDD]

I agree with Fairwind and the "two different worlds." My MO works and still notes my RO with our meetings and my status. I am very confident in my MO. I wad diagnosised with lung metastasis. He had a GA68 PSMA trial set at UCSF for me last month/October . After that & the finding he then referred me( glt me in quickly to another doctor (last Monday )at UCSF Cancer center. They both have decided on my plan. I am VERY impressed with the people at UCSF. Just as impressed with my MO for his thoroughness. You need that trust in all your doctors..

[DaC00tie in reply to MichaelDD]

I agree with you, the issue I'm having is that I don't have that trust with this doctor. As with my past history I shopped doctors until I found a PC doctor that I completely trusted, and an orthopedic surgeon. I absolutely don't have trust with this one. Since I'm seeking a second opinion at UCSF, do you mind if I ask who your treating oncologist is?

[DaC00tie in reply to MichaelDD]

I also agree with the two doctors being from different worlds. But, they work as a team and have peer meetings and keep in touch. And, after a patient is treated by an RO, the patient continues to be treated by the oncologist, having full access to RO records. Because of this continuing treatment by the oncologist, he deals directly with the symptoms and side affects of radiation treatment. I'll say it, I don't believe he doesn't know what the affects will be. Simply because he deals directly with them with every patient he has that goes through radiation treatment.