Dlp-1 negative and Keytruda?

[Cp014]

anyone that is dlp-1 negative on or been on Keytruda?

If so, how much did it help you?

Thank you

[etpd2226]

Hello

I was on Keytruda alone for two years and I am doing well. I also did alternative treatments. i believed all of it helped. I was diagnosed with stage IV adenocarcinoma in June of 2020.

Best of luck to you!!!

[Cp014 in reply to etpd2226]

awesome to here you doing well!!

Thank you for your response.

[etpd2226 in reply to Cp014]

Thank you!!

[SharingHope in reply to etpd2226]

Good to hear. My husband is in his second year of KEYTRUDA. He had to drop Alimta bc of kidney damage. What are the alternative therapies you use? We are interested in learning about alternatives as well.

[Cp014 in reply to SharingHope]

No alternatives. All part of treatment plan.

note we declined the alternative program. Being dr noted it would limit my options worse if I am not being treated that would be a major problem, mistake in my case.

So no brainer, I declined the alternative trial treatment programs.

Plan:

1.) casodex and dutasteride for a month. For pc. At time the lung source had not yet been identified, confirmed. That did not occur until a week later after the utsw lung surgeon identified.

VIP note!!! Mda prostrate urologist and oncologist prescribed on my very first visit. Btw the Texas oncology oncologist would not prescribe either until she got a confirmation of the lung source. Which required lung biopsy.

She stated she not treating me for the prostrate only my lungs. She actually said that, many times!!

I blew a gasket you a dr and need to treat me now for what you do know. Your responsibility to see, treat all. She said no I can only address lungs. On the spot I decided I am getting a team of drs who know there stuff and also treat me w respect and dignity.

This is for real.. real discussion at Texas oncology in Denton. Camille Johnson I go on records here how she treated me. She was not nice as she communicated this to me.

I told her I guess I need to get a new, real dr who cares about me, fulfills their duty.

She simply replied that is your choice. So I did.

Realize this is the same dr, clinic who requested a ct pet scan not a pmsa scan.

She requested in5/24 I not get that until 8/25. She and her clinic never returned the authorization calls from bcbs.

I had to go up there in person and raise hell. This forced office manager to call bcbsback. She swore they never called. Yet bcbs emailed me the call logs. I called them to raise hell. My life at stake what is the issue?

Bcbs also had me stay on two conference calls where they called the clinic. No answer. No calls back. I confirmed they call the one and only number they give out,

Got the pet scan finally. Upset only pet and not pmsa. The pet scan was useful of value. She reiterated only addressing the lungs can’t do anything until your lungs are biopsied.

I said well at least do something for My prostrate. No can do!! Seriously!!

Note the vip note above. Mda prescribed on day one, I not have to ask. Nothing different than Texas oncology. The source in my long was not yet known. Had not even met the lung drs yet. That happened a week later!!

I told her she only come this far cause my new drs need, been waiting on those pet scans and I paid you to communicate results. So I at least getting that but it took 4 months to get.

Yep that is today’s promotion for Texas oncology. That I s my experience. Which as far as I am concerned that darn near result in my incurable treatment options.

She not score, stage tumors. Do absolutely nothing.

I got very upset w her fine I already have a team of drs and never went back.

About a mont later she scored the cancer put a lot of details in my final report. Details she refused to discuss w me at the time. She als write negative things about which could severely impacted my options of drs as when they read her report they won’t see me!!

Now that was pure evil, spite. What she stated was completely untrue. Served no purpose obvious retaliation.

She is young and take things personally. Good drs put us first not themselves much less stupid immaterial personal feelings.

Sorry I digressed Greatly!!

Bothers me to even think about it. Want folks to know that story. It was worse part of my journey so far.

I actually consider her and her treatment, ignorance of me as a blessing. As it forced me find alternative, better treatment.

Sorry… back to treatment plan step:

2.) then round 1 of four rounds of chemos two types plus adt key keytruda. New round every three weeks. For lung and pc.

3.) then bilobectomy on right lung, sub carina.

4.) follow up lung treatment. Chemo or radiation or adt. Not sure. Seems they did explain but I don’t recall. Not looking that far down road as far as details go.

5.) start curative treatment on prostrate. Again a bit further ahead. Unknown exactly what we, I will decide. Urologist noted I will have multiple options including surgery, if that is what I want. We will discuss ALL curative options when time comes. For now he assured me the lupron is treating, holding back, till that time comes AFTER 3 above. Maybe after 4. Not sure. Did not nail him down on that. Drs seem assured I could hold back for years. I won’t push that long. We will address asap.

[etpd2226]

I use massage, reike, acupuncture, cranial sacral, sound therapy, prayer, and a lot of written positive messages i have in my car, bathroom, mirror, living room. I do alternative treatments as I feel a need for. The key for me is to not to live in my cancer. Its a piece of me, but not all of me. I know I will one day die, but I am committed to living doing only the things I love. Being in nature and with my horse brings me healing, peace, and good vibes.

Best of luck to you. 💕🙏