Immunotheraphy and Covid-19? - Advanced Prostate...

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Immunotheraphy and Covid-19?

Hotrod65 profile image
24 Replies

Interested in thoughts about those of us in active treatment with Immunotheraphy drugs, ie: checkpoint inhibitors Blockade, Provenge?, Have my own thoughts and those of my own Oncologist that states very high risk of unfavorable response should infection occur..but basically" no Data"..stay safe.

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Hotrod65 profile image
Hotrod65
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24 Replies
Tall_Allen profile image
Tall_Allen

No data. But why does he say unfavorable response? That's the opposite of what one would expect.

Hotrod65 profile image
Hotrod65 in reply toTall_Allen

Told my immune response is in overdrive currently and an infection would put it in superdrive that may turn it against healthy cells and organs?, Which is a risk factor anyway

Tall_Allen profile image
Tall_Allen in reply toHotrod65

A runaway auto-immune response is always a danger with any immunotherapy.

Hotrod65 profile image
Hotrod65 in reply toTall_Allen

Agreed, 48 infusions of Pembrolizimab Keytruda over 4 yrs...so far so good...weaning off after 2 more treatments.

CalBear74 profile image
CalBear74 in reply toHotrod65

Can you explain where you are after four years of KeyTruda?

Hotrod65 profile image
Hotrod65 in reply toCalBear74

4 yrs , 48 infusions.. currently Complete Durable Clinical Remission NED, unprecedented for stage 4 metastatic prostate cancer, but im scNEPC with a rare Genomic POLE mutation with an HBM, that was a match for checkpoint inhibitors Blockade.

CalBear74 profile image
CalBear74 in reply toHotrod65

Thank you for your response. I assume your PSA went undetectable and has remained there? Is this a fair assumption? Do you have any PSA numbers to share? You are definitely an atypical patient.

Hotrod65 profile image
Hotrod65 in reply toCalBear74

My PSA at DX was 10.5, but 10 months earlier at annual physical it was 0.02 at age 59, Biopsy results were 10 of 10 cores positive for Aggressive Adenocarcinoma with small cell differentiation.. Gleason 9 4+5.., chemo knocked it down but not enough.. decision made to remove Gland to have it studied more closely and Genomically Sequenced by Foundation Medicine CDx panel..confirmed Neuroendocrine carcinoma that had a High Burden Mutation with a rare POLE mutation that was a match for effective checkpoint inhibitors Blockade immunotheraphy.....would not be alive today when all conventional treatment failed to get a response..my PSA for past 4 yrs is at 0.10 and hasn't moved...but again NEPC does not express PSA and doesn't migrate to the bone environment but to soft tissue and organs...6 month scans show no disease progression...Neck to Pelvis CT and Bone scans done...Blessed.

dasyluo profile image
dasyluo in reply toHotrod65

Hi Hotrod65, it is very good to hear that you are cancer free.

I was diagnosed recently with Small Cell Prostate Cancer beside Advanced PC diagnosed a year ago, I was wondering what the difference between Small Cell prostate cancer and Adenocarcinoma, or they are the same.

If they are the same, then it opens a hope for my future treatment of Immunotherapy/checkpoint inhibitor, is that right?

I am in Toronto, hope local hospitals offer similar trial as where you live. By the way, please advise where you live and which hospital you had treatment?

Hotrod65 profile image
Hotrod65 in reply todasyluo

They are 2 different beasts.. Neuroendocrine carcinomas are considered a Hormonal cancer and typically very Aggressive forms and harder to treat.. Adenocarcinoma is most typical of PC as well as alot of other type of cancer pathology..in my case I had Adenocarcinoma with a Neuroendocrine differentiation..that of which showed an HBM...High Burden Mutational factor that qualified me for experimental trial with Checkpoint Inhibitors Blockade immunotheraphy thru my Medical Center in Boston....have Had 48 infusions going into 5 yrs since diagnosis with plan to stop after total 50....,just no data to prove it has cured me and I don't certainly look at it that way...I'm turning 65 next week and have had a pretty active quality of life since with no physical limitations whatsoever..I'm Blessed and certainly hope what they are finding out in my case will help countless others that will get the same diagnosis ..Stay safe and God Bless all my fellow Warriors.

dasyluo profile image
dasyluo in reply toHotrod65

can you please advise if Neuroendocrine Carcinomas is the same type of cancer of prostate as small cell carcinomas?

Hotrod65 profile image
Hotrod65 in reply todasyluo

Small cell carcinoma is typically noted as scNEPC...small cell Neuroendocrine Prostate Cancer

Kevinski65 profile image
Kevinski65 in reply toHotrod65

Which hospital do you go to in Boston?

henukit profile image
henukit

I'm doing Provenge , MO has no concerns other than general ones. I have an autoimmune condition.

Lynsi13 profile image
Lynsi13

My dad's oncologist had him stop his Provenge treatment after 2 of the 3 rounds. It was disappointing to us, but she said that "the risk of getting the virus was MUCH greater than the potential benefits from the final Provenge treatment." So, we stopped them and are hoping that he'll still benefit from the two treatments nonetheless.

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

13 infusions of Pembrolizimab Keytruda over 2 yrs... for my lung melanoma and "so far so good"..... My Melanoma M O cancelled my live appointment for a telephone recap instead. Everyone is scared stiff.........I'm still scared of my ex-wife......

Good Luck. Good Health and Good Humor.

j-o-h-n Monday 03/30/2020 5:15 PM DST

CalBear74 profile image
CalBear74 in reply toj-o-h-n

What has the Keytruda achieved in PSA suppression? Are you taking ADT drugs, such as Lupron?

Hotrod65 profile image
Hotrod65 in reply toCalBear74

All I take is 200 mg infusion of Pembrolizimab every 12 weeks out from 3 weeks, 5 mg Prednisone daily..that's it, I was on everything early in DX including 6 Lupron injections that failed to lower my PSA

Hotrod65 profile image
Hotrod65 in reply toHotrod65

I also have several publications, Medical Editorials, Newspaper articles etc including paper published in ASCO, I speak across the country for several Foundations as a patient advocate for Foundation Medicine, CRI cancer research institute for the Advancement of Immunotherapies and Tufts Medical Center Molecular Oncology Research Labs., Happy to provide what I have to anybody interested?

j-o-h-n profile image
j-o-h-n in reply toCalBear74

Yes I am on Lupron and Casodex.... When I asked both my Pca MO and my Lung Melanoma MO if and how my injections of Keytruda would benefit/affect my Pca they both responded that unfortunately it would NOT... (life sucks while you're having fun)....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/31/2020 12:28 PM DST

Hotrod65 profile image
Hotrod65 in reply toj-o-h-n

2 different beasts.. melanoma might be PDL1 positive to be getting result..not typically case for a PC response.

j-o-h-n profile image
j-o-h-n in reply toHotrod65

Check mark.......... you're right

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/31/2020 2:57 PM DST

Cgjunior profile image
Cgjunior

After about 9 months taking a combo of PARP-I and a checkpoint-I, my autoimmune system started to go haywire. Swollen and reddish finger joints and crazy itchy fingertips. The checkpoint-I was stopped out of fear that some major organs could be attacked.

About >25 years ago I had sarcoidosis in the lungs, but it went into remission after a while. So maybe I’m pre-disposed to auto- immune reactions like that. Other folks may tolerate this type of treatment. But disappointingly for me, no more immunotherapy I guess.

CG

Hotrod65 profile image
Hotrod65

My understanding is our immune system and responses are all different..some can tolerate it fine..Myself 48 infusions of Pembrolizimab Keytruda over past 4 yrs has given me Adrenal Insufficiency which is controlled by low dose Prednisone, typically you know within days of first infusion if you will tolerate it?..skin rashes and gastrointestinal issues are first noted...it has been a lifesaver for me when diagnosed 5 yrs ago and given 3-6 months to live..I'm in Complete Durable Clinical Remission NED currently for stage 4 scNEPC.

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