Follow-up...and perhaps hope for us all - Advanced Prostate...

Advanced Prostate Cancer

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Follow-up...and perhaps hope for us all

shueswim profile image
18 Replies

Last month I posted about my son's sudden leukemia diagnosis (see below). Although he was not well enough to make it to MD Anderson as planned in December, he did get there this week. It was anticipated that their recommendation would be either stay the course with the intense chemo that he was in the middle of (3 of 8 cycles completed) or move forward with a dangerous, but promising bone marrow transplant. Instead...game changer - stop all chemo and begin a brand new targeted drug therapy. So, he's moving from the standard of care chemo protocol with a 50% cure rate and terrible side effects (confined to the hospital for 50 of the 60 days since this began) to targeted therapy that is much less toxic and holds the promise of an 80% cure rate. These drugs are brand spanking new. These kind of breakthroughs are what gives me hope that if I can stay alive long enough perhaps something similar can be discovered to help those of us fighting PCa.

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Last month's post:

So it’s been almost 4 years since I was diagnosed with aggressive G9 PCa. Surgery, adjuvant RT and ADT, then more RT after recurrence in a handful of pelvic LNs. Been on ADT and Zytiga for 11 months to hopefully cleanup anything that may remain. PSA has been undetectable since the treatment for recurrence began last January. All things considered, I feel great and am hopeful that that just maybe we got it this time.

But, occasionally I would slip into the “why me” frame of mind...until 3 weeks ago today. It was then that I received a call in the middle of the night from my 38 year old son who had gone to the emergency room for pain in his calf. They diagnosed a DVT and several blood clots in his lungs - all from leukemia (ALL). Two days later he began the first of 8 rounds of intensive chemo. After round 2 next week he’s off to MD Anderson to discuss a bone marrow transplant.

No more feeling sorry for myself, he’s endured more in 3 weeks than I have in 4 years. I’m hoping my situation remains good, but I’m much more concerned with his prospects than my own.

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shueswim
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18 Replies
noirhole profile image
noirhole

Great news. I hope you and your family all the best. A good Mexican Restaurant in Houston is Chuy's. Always was a stop for me when I participated in a drug trial at MD. I also enjoyed their Zoo which is close to the hospital and gave me an excuse to wander around for some exercise outside of the hospital walls.

Peterd110 profile image
Peterd110

Praying and hoping for a wonderful outcome!!!

Tall_Allen profile image
Tall_Allen

My prayers are with you and your son. That new targeted therapy sounds miraculous!

snoraste profile image
snoraste

wishing you the best. please update us on the good news down the road.

Blueslover profile image
Blueslover

Missed the post about your son and his leukemia. Hope to God that this new treatment puts him in the 80% who recover.

Best of luck to both of you. My thoughts and prayers are with you always

Hugh

tallguy2 profile image
tallguy2

This is excellent!

I understand what you’re saying. I’m very sorry about your son. That’s brutal on you both. I too have over four years in with apc. I’m thankful that I have this , not my precious wife or any other family members. Am I wrong ? Do they now cure leukemia? I pray it works for him and that he bounces back . I’m glad that you’re still here for him.🙏🏼

shueswim profile image
shueswim in reply to

As with all cancers I suppose there are variations - some are more curable than others. Even within the main categories of leukemia there are sub variations which then further impact the curability. So the answer to "Do they now cure leukemia?" is unfortunately complicated. I'm hoping the answer is yes for the specific variety that my son has - certainly he seems to have a good shot.

in reply toshueswim

I pray so brother. 🙏

MarkBC profile image
MarkBC

My partner is a cancer research scientist who has talked about the great advances that have been made with leukemia. It is one cancer that responds quite effectively to new treatments. It may eventually become the first of the cancers with an actual cure. Unfortunately prostate cancer is one that doesn't respond nearly as well to things like immunotherapy. Best of luck to your son.

Hotrod65 profile image
Hotrod65 in reply toMarkBC

I am told on record worldwide thru publications etc, that im the only MPC4, small cells Neuroendicrene patient currently in Complete Clinical Remission after 47 infusions of Pembrolizimab Keytruda immunotheraphy. 5 yrs now since DX and 4 since Conventional treatment failed..

What is the name of the leukemia treatment?

shueswim profile image
shueswim in reply to

Quick disclaimer - my son has ALL leukemia and is "Philadelphia positive" (PH+). The PH+ aspect use to dramatically decrease cure rates, but this new targeted therapy targets that specific chromosomal abnormality. So, unfortunately not everyone who has leukemia is seeing the benefits of this therapy.

The therapy has been pioneered by Hagop M. Kantarjian, MD, professor and chair of the Department of Leukemia at The University of Texas MD Anderson Cancer Center in Houston. From what I've learned so far it consists of blinatumomab and ponatinib (Iclusig). Both drugs are obscenely expensive. The first is being provided by MDA at no cost while the second, a 3rd generation tyrosine kinase inhibitors (TKI), will require some discussion with the health insurance company. Dr. Kantarjian has a little clout in the medical world so presumably he will be effective in persuading them, particularly since this 3rd generation adds 20% to the cure rate of this therapy.

in reply toshueswim

Promising 👍

Hotrod65 profile image
Hotrod65 in reply toshueswim

Was CAR-T discussed? Chimeric Androgen Receptor

..I know a young patient with ALL responding.

Currumpaw profile image
Currumpaw

Hey shueswim!

I'm glad your son was able to recoup enough to make the trip to MD Anderson. I wish him a full recovery. Almost seems planned doesn't it?

As you said, staying in the game might make a difference for us. All the supplements and so on that many of us take might be beneficial at slowing whatever is going inside of us. There have been some very fortunate people that have even reversed bone metastases but the number is small and these people may well have a will and belief that harnesses that placebo effect. Don't speak negatively around them! I wouldn't want to be their jinx!

My best to your son. Glad that burden has been lifted from your soul and replaced with hope.

Currumpaw

jfoesq profile image
jfoesq

So nice to hear some good news.

Spanking new drugs! May they heal your boy . Thanks for posting what I think is good news. Get him well again . Together you both can heal .. Take care ....

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