Progress Report Immunotherapy - Advanced Prostate...

Advanced Prostate Cancer

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Progress Report Immunotherapy

Philly13 profile image
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As a refresher, I was invited to participate in two clinical trials. I chose the AMG 509 program, which is local, instead of QuEST1, which is 2 hours away by car. There were few data points to assist in the decision.

The Doctors and administrators from NCI were supportive and accommodating. They invited me to continue to stay involved, suggesting that they will be accepting patients for a while and that I should keep them up to date. One said, he thought i should do both. I am not sure exactly what he means by that, but I will find out in the near future.

The AMG 509 trial administrators have been conducting a battery of tests to make sure I qualify for the program, which will begin on December 15. The last qualifying test is a bone biopsy later today.

The scan and labs section has produced some moments that caused a bit of anxiety. For example, a nurse called after the CT Chest was done, the radiologist called out an area in my lungs upper right lobe that had ground-glass opacity. She asked me if I had a chest cold or cough. I responded by letting her know that physically I feel great. Emotionally is another story. She didn't help the situation by suggesting something was going on in my lungs. My mind went directly to the worst possible place, and I imagined that the cancer is metastasizing to my lungs. Ultimately, I had appointments the next day with the trial administrators for an echocardiogram and other blood tests. I walked into the oncologist's office unannounced and asked him to review the CT scan with me. He was nice enough to take 10 minutes to show it to me, and it was a very faint impression. He said he is not worried about it. There are obvious jokes to go with this scenario, but I was mostly relieved to see the images and hear his words.

The labs have included many things I never heard of before, but I watch PSA, AST, ALT, ALP, and LDH. The numbers have been jumping around erratically. ALP was 157 on November 2, 135 on November 27, and then 187 on December 3.

LDH has swung from 132 down to 115 and then up to 680 in the test at Jefferson on December 3. Other numbers are going up and down.

I have eliminated Abiritarone for 30 days to cleanse my system for the antibody.

My reactions to the last couple of weeks' events, and at times non-events, have been more emotional than they have ever been. I don't particularly appreciate feeling this way, and the only relief has come from long aerobic exercise sessions. I have always been able to manage my emotions well, no matter what stresses and pressures happen. I pride myself on keeping my head while everyone else is losing their composure. The kind of sadness I have been feeling is uncomfortable. I suppose there are times when the cumulative stress takes its toll, and the transition from losing my brother to dealing with the reactivation of cancerous growth in my body is a lot to deal with in a short period. Hopefully, I will find effective coping mechanisms as I move into the next phase of the battle.

I continue to be asymptomatic. I am grateful for that. I cleared enough time to quarantine for a week, get covid tests for my whole family, and spent Sunday with my son, daughter, 20 month-old granddaughter. It was a delightful day.

I leave for the bone marrow biopsy momentarily. Thursday, my wife gets a knee replaced, and then I start to receive the infusion exactly one week from today.

Thanks for listening, commenting, and advising.

Philly

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Philly13
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Kaliber profile image
Kaliber

Hi Philly .....It’s interesting to see the differences between our circumstances. From where I’m at, all the “ action “ you are having with treatments... testing, trials ...all that ... seems exciting and filled with potential and hope. I can see the sad / depressing side when something doesn’t work out , but you seem to be moving through an abundance to gesture at ... and potential. You seem kinda lucky , and actually seems like you are coping pretty well ..... considering .... too.

25 months ago I was diagnosed and a meeting table full of medical people was strongly urging me to enter hospice immediately, perhaps a short stint at home but inpatient was at hand. There would be no more scans, .... I was past radiation and surgery ...no trials , nothing as I was too far gone. Half my first oncologist meeting was me and the wifey and the hospice team explaining the hospice program they expected me to enter immediately. I had no treatments offered ..just straight from DX to hospice. My wife and I bawled our eyes out and I asked for “ at least “ one attempt at something treatment wise and the oncologist put me on Lupron Xtandi Zometa. I turned out to be a “:super responder “ ( original psa 1400 - 1600 ) , now undetectable for 24 months.

There still is no scans, surgery, radiation etc for me but I’m holding on by my fingernails with adt ... the point being is that I’m never going to know the thrill of potential that you are experiencing, the thoughts of help from different types of treatment angles, the possibilities of trials .. the kinda thrilling prospects of potentially productive results ... all extending your time with your family .... and you still have mobility to go out and enjoy things in the world kinda normally ( I’m near wheelchair material from adt side effects and bone damage ) . My oncologist and GP kinda treat me like I’m a medical freak, and when I start talking about future possibilities, they change the subject ....... I always get the same “ your psa is good “ , “ have you settled your affairs and been spending time with your wife and family “ .... “ are we keeping you comfortable? “ .... treatment. I get it that they don’t want to build up my expectations... I guess they are being kind to me and the wifey, but I expect to continue to surprise them . Yayahahahaya

In an obtuse kinda way I won’t be disappointed by expectations I don’t have I guess but I still look at what you are doing and what you have ( mobility health ) and think how exciting ...even thrilling your circumstances are compared to mine. I envy you .

I dunno if this helps you any , I hope it does. guess I’m just trying to illuminate that circumstances can be viewed from many angles ... and depending upon your perspective , things can look great from one angle that might not from another.

Just say’in brother philly , you da man 💪💪💪💪👍👍👍👍❤️❤️❤️

keepinon profile image
keepinon

I am sure your down feeling will be short lived. Everybody goes through down times. I hope the trial works out for you. Good Luck with everything! Keep us informed on how the trial goes.

j-o-h-n profile image
j-o-h-n

Lots of stuff on your plate so I think you should change your userId to Filly13.... Remember take two and hit to left.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/10/2020 6:07PM EST

Thanks so much for your very informative posts. Know that you are helping others here, and we are all pulling for you.

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