I’m confused! I did do almost 2 month... - Advanced Prostate...

Advanced Prostate Cancer

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I’m confused! I did do almost 2 months ago a single half dosage of chemo. But my results have been insane

greatjohn profile image

My PSA has dropped from 1017 on October 1 to 642 on October 14th. Appx 7 weeks ago I did 1/2 dosage chemo (Jevtana) almost did me in and my platelets dropped to 6000 my hemoglobin dropped to 7.4. My PSA went only upward. So that was it for me and we stopped

Now for the past 14 days my PSA has been dropping. Dramatically. I go in twice a week to make sure I don’t need more transfusions and I do the PSA every time. And every time it’s down almost 100. So that now I’ve dropped almost 400 points in approximately two weeks.I know 642 S. high to most people, but perspective and we were heading is everything. This is a large drop. My last hemoglobin at my last platelets were very good as well for me. Platelets 18,000 and hemoglobin 10 .5….And my alkaline phosphatase has gone from over 200 down to 137. I think this is good news and reporting. I also did one thing which was not supposed to be a treatment for the cancer. But rather a treatment for my Platelets. I did four days of high-dose dexamethasone. By the time those four days were over I was not able to walk without a cane. And I spent 23 1/2 hours of every day in bed. Now I’m walking around fine, and I just don’t get it. But I love the direction things are going.

gJohn

I did make spaghetti with a white sauce with shrimp and mushrooms. Delicious. I had to eat!

82 Replies

Great success and LOTS of luck. Very very encouraging

greatjohn profile image
greatjohn in reply to Ahk1

And nothing I was expecting….🥳🥳🥳

AWESOME !!!! 👍👍

That's Parmigiana Reggiano on that great looking meal I hope???

Fantastic news!

Thats awesome. Great news! Thanks for letting us know.

considering “ everything “ that psa drop has got to be making you smile. That’s very hard to come by good news for you for a change. Not a nicer more deserving guy ( guys because I know hubby is feeling a bit better right about now, too ) . Good for you BJ … ❤️❤️❤️

Ahhh...insane results refer to your health. I assumed the headline was about the pic! Insane food results! Great to hear good news. I'll be in S FL in a couple weeks. Ice cream at Sloane's will also provide insane results!

This is great John! I am so happy you are recovering from your last difficult episode. 🌹❤️🌹

Good News any way we can get it. A Win is a Win!

I loved reading this! Great news, and keep on keeping on!

Glad you are feeling better! Maybe the Lu-177 contributed to the drop?

I am so glad for you! great news!!

That's awesome news! Keeping you in my prayers!

That's wonderful news!

Super! And boy does that spaghetti look good!

❤️

Great news!! I wish you the best of luck. Your pictures always make me hungry. Nice selection of delicious food.

Always love to hear you are making progress, especially so fast. Maybe those Lu177 treatments are also kicking in?

It sounds kind of late but you never know I did the one treatment in April very first of the month

I only had one LU177 treatment and that was the very first of April…So that seems kind of unlikely. But who knows? I’ll take any improvement from anywhere

Must have been the pasta!!!

That’s exactly what I was thinking LOL

Take it and run-- eat well and exercise!

Food looks wonderful as expected. Great response on PSA. More chemo in your future may bring PSA down more. Best of luck.

That's 👍🏽 I hope things keep moving in this direction

Answered prayers and pasta? Although I thought dexamethasone was commonly used to treat cancer as well, apparently that is the reason for the PSA drop. Regardless, happy to hear this news! May it continue! 🦋🕊️🙏💙🍝

God works in mysterious ways 😊. That pasta looks pretty amazing. I’m sure you enjoyed every bite! Always love your food photos

Great news, congrats!

Great news!!

Provenge? Had it? If so is it kicking in? I think mine is 2 years later. Random thoughts from a random mind.

Sounds like when it almost killed you, it played hardball with your cancer. Great. PSA clearing out and cancer dying back. Recover and enjoy life... Life Is Good.... Nice meal too.

Hi John,

What was your Dexamethasone dosage, please?

greatjohn profile image
greatjohn in reply to Pleroma

40 mg a day for four days. All the doctor told me Regarding side effects was “you’re gonna hate it” I had an entire seven days from hell, and I’m still not feeling 100% right today in the afternoon I started running a really high fever. Something I never do I run about 97 to 98 tops…Today I was 101 and it took three hours for the Tylenol to bring it down to close to normal range. I don’t know what the Hells going on with me. Have you done dexamethasone? I’m curious about other peoples reactions with it. And did you do that same dosage? Normal dosage is 4 mg a day.

Pleroma profile image
Pleroma in reply to greatjohn

John,

No, I have not taken Dexamethasone. I know it is used for palliative purposes with some success. I was wondering if it reduces inflammation to such an extent that the cancer gets somewhat starved. I have a hunch inflammation is more deadly than we currently know. But I will let others chip in.

TeleGuy profile image
TeleGuy in reply to greatjohn

My experience says that you should not underestimate the dexamethasone.

I stopped abiraterone+dex prior to starting a series of 5 Lu-177-PSMA treatments, but tapered off the dex slowly. As I did, my PSA started to rise despite the Lu-177 treatment so we restarted my 0.5mg dose, and the PSA went right back down. That was 18 months ago at this point and it hasn't come back from undetectable.

The theory behind the SWITCH trial (that suggests trying dex after prednisone fails) is that the androgen receptor mutates enough that it starts to co-opt the glucocortoid receptor and use stimulation there to promote tumor growth. The dexamethasone is chemically different from prednisone and interferes with the effect. It's one of the prizes we get from having more aggressive cancers.

And here's a link that I posted on another thread recently about dexamethasone treating CRPC. Small sample size, but 62% saw a PSA decline >50%

doi.org/10.1002/1097-0142(2...

CAMPSOUPS profile image
CAMPSOUPS in reply to greatjohn

That is great news John. Glad to see “all” the numbers going in the right direction. How soon you would recover your basic blood numbers after 177 and then before fully recovered you had Jevtana were one of those “I wonder’s”.

Good numbers are good numbers and I hope that the previous PSA rise was the typical “dead cancer cell” phenomenon we often see after strong treatment (chemo etc.).

Now a bit of buzz kill, back seat driver, Dr. quack lol.

Your fever is concerning a little. It could be from a lot of things just plain having cancer can cause occasional fever of unknown origin…I’ve had that.

But anyway, the Dexamethasone is known to lower immune system and invite infection.

I hope the fever has passed but if not maybe contact Dr. and relay your recent Dexamethasone regime and fever.

monte1111 profile image
monte1111 in reply to greatjohn

Just 4 MG 2 tabs every 12 hours for 3 doses before chemo infusion kept me wide awake for 3 days. A temporary zombie. Hated them. But if that's working for you I'm glad I kept my 3 years old tabs. I might need them. Amazing. Glad it's going your way.

greatjohn profile image
greatjohn in reply to monte1111

Can you imagine how good I felt with 40 mg in the morning four days in a row. It felt like the thing to give you after chemo that causes your bone marrow to work. I feel like every bone in my body was being crushed by a steamer steamer

Super happy for you John.😀

Whatever u are doing..Keep doing it. So happy for you. You deserve this breakthrough. May the good LORD continue to bless you in your healing journey. Amen👏👏👏👏👏👏👏

wonderful news . Thanks for sharing- I can feel everyone sending you such hopeful vibes.

It's encouraging news.

That’s amazing. Any plans for more treatments or wait and see if it keeps going down?

Schwah

greatjohn profile image
greatjohn in reply to Schwah

For now, I am still on hold. But I am speaking with Dr. Onik soon You can see what that is like in just my latest post on here.

Ramp7 profile image
Ramp7 in reply to greatjohn

I would be interested with the Onik interaction. Maybe I shall be reaching out to him as well again. My cancer is hormone resistant with PSA going up. I asked about Dexamethasone. MO was not particularly interested.

Einstein actually defined INSANITY as doing the same thing but expecting a different result!

Here you've done something different and found an unexpected result!!!

Awesome news and it could quite possibly be the Pasta then... Hahahaha ;) :D

Hope the trend continues with the good results!

Best Regards

Sounds like u killed some cancer cells and you blood parameters are rebounding.

Sounds like a God shot to me.

Ed

Hey greatjohn!

Hoping the downward trend continues for you.

Food porn posted where this vegan can see it. You are indeed a cruel man greatjohn!

Onik? You have a big gun there!

My best to you.

Currumpaw

You are an amazement, gt. And as said before, an inspiration. Is the plan to tread lightly for a bit to see how long the psa will keep tracking downward?

greatjohn profile image
greatjohn in reply to Lavender22

That is definitely my plan. I’m not sure what the oncologist has in mind.

John, your hemoglobin at 10.5 is still low. Are you taking iron or iron infusions?? Just concerned as hemoglobin for men should be around 13-14.

I’m all aware it’s still low. But compared to what I’ve been being 6.5 to 7. It’s kind of great.

I had similar results. I did four rounds of Jevtana. Each time my PSA rose. After the last dose (#4) my PSA was 4247. My oncologist stopped the treatment then my PSA dropped to 1700. However, my alkaline phosphatase kept dropping during chemo and is currently 167. That was in Miami. I'm now in Virginia and my Oncologist wants to try Jevtana again, so this Friday I go in for my fifth treatment.

greatjohn profile image
greatjohn in reply to skateguy

Wishing you great success with your next dose

whwalker1 profile image
whwalker1 in reply to skateguy

How long did it take for your PSA to reach 4247 and what treatment were you taking. My PSA is now 126 after Chemo and still on Chemo pills. I had RP 22 years ago and my PSA was kept below 15 with Lupron, Casodex and radiation. In 2020 my PSA went up to 20 and started on Zytiga and immediately PSA went to 126 so started on Chemo (Taxotere) in 2021. After Chemo stopped PSA went to 50 and started on Lynparza in September 2021. PSA has gone from50-126 in two months.

I also have a Trelstar shot every 3 months and a Xometa infusion.

I have small Mets in spine and liver but no pain. Any suggestions for me to get PSA down?

skateguy profile image
skateguy in reply to whwalker1

In June of 2021, prior to starting the Jevtana chemo, my PSA was 1438. A year earlier, June 2020, it was 560. Once Xtandi stopped working my PSA has been going higher. I was very active until a month ago. The best advice I can give you is to see as many oncologist as you can. I have seen probably 12 or so over 11 years. I found only one that thinks outside the box. I'm currently seeing two oncologist. One is currently trying to get me into a Lu177 trial. The other said the next step is Hospice. The right Oncologist can make a big difference in Survival and QOL. Other than that I do not know what to say.

whwalker1 profile image
whwalker1 in reply to skateguy

I am also trying to get into Lu-177 trial but seems I am excluded because I have had Chemo.

Keep it going GreatJohn, think I'll make me some dat.

Happy to hear it John!

Your movie has been a hell of an Epic John, and you have been a star in every scene! And we get to hear the Director’s Cut analysis! Let’s hope many more chapters are in the can!

feeling good for you

Glad to hear that you’ve had good news, well deserved and I hope it continues

Hugh

Good to hear that John. I hope it continues lower.

Note to self, don’t read GreatJohns posts till after dinner…now I’m hungry!😋

greatjohn profile image
greatjohn in reply to Mikeski

That pasta was so delicious! I’m trying to be a bit more wholesome with dinner tonight …making garbanzo beans with no nitrate Italian sausages and sundried tomatoes with basmati rice and some tomatoes that I am roasting. I’d invite you to dinner if you were close🥰🥰🥰

Mikeski profile image
Mikeski in reply to greatjohn

I’d love it, that sounds good too! Unfortunately I’m up in MA. Enjoy!

I can only tell you that I am very very happy John!!! 😀🎊🎊

greatjohn profile image
greatjohn in reply to Rilu

Your happiness makes me more happy! Thanks so much.

Keep us posted every week on the developments. Love the looks of that meal! We think alike on food.

I’m so happy fir your results- my husband was considering a low dose Jevtana. Can you tell us what your blood labs were before you started the Jevtana? Ie hemoglobin, white, red and platelets??

They were low but the jevtana really hit me hard my platelets dropped to I believe eight and my hemoglobin dropped to about seven.

Absolutely fantastic news for you, really over joyed you must be and rightly so wow may this carry on and your psa drop. Even further best wishes to you x

Fortune favours the brave 💪. Good luck to you!

Numbers, Numbers and more Numbers.

youtube.com/watch?v=JQ-KT0c...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/19/2021 10:24 DST

Next week, we'll do colors...............

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/19/2021 10:27 DST

greatjohn I'm fairly new to this forum and I've read your previous posts. You inspire me frankly. I love that you have no quit in you and I appreciate your posts.

greatjohn profile image
greatjohn in reply to swwags

I wish you great success and happiness along your journey! That’s the important part of this journey, trying to maintain a happy attitude and thankful heart.

♥️🙏♥️🙏

Thanks guys! And the best to you!

Sounds great,PSA coming down is awesome, maybe staying away from sugar in your diet, I had my PSA come down because I changed my lifestyle of eating all the great foods to help fight and not feed the cancer, along with my radiation treatments. Keep up the great work, God Bless

Great News! 👍

❤️❤️🙏 Enjoy the can’t figure it out!

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