Update: We received the CT scan results... - Advanced Prostate...

Advanced Prostate Cancer
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Update

Oskie53
Oskie53

We received the CT scan results 2 weeks ago. His liver lesions have doubled in size and he had numerous small one that were not one the previous CT. His oncologist said that the Taxotere was not working and the only thing left he could offer was Jevtana. His Last PSA was nearly 1800. Last Friday he started the new chemo. They have put him on 10 mg of steroid daily in addition to the chemo. Since Friday his life has been miserable. He spent most of the weekend in bed with severe “ muscle pain”. He says it moves around from his legs, to arms, to his back. Yesterday he went on to work and came home beyond exhausted with horrible back pain. He was up vomiting during the night. My question is can chemo deplete the bodies electrolytes to a point that he has this muscle pain? He swears it’s not bone pain. He has very little appetite and looks horrible. It’s breaking my heart to see this strong man suffer so much. I am almost ready to suggest no more treatment, just enjoy life a day at a time. I feel the chemo will kill him before the cancer does. I feel like a deer caught in headlights. Anyone had this kind of muscle pain?

16 Replies
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I’m sorry Oskie53 . It’s a heartbreaking disease for our loved ones as well . Please dig deep and strengthen your faith . Thank God that he has you . We are all deers in the headlights when the whip is upon us . Please keep your self up during this ordeal . 🙏

Yes, it can dry you out terribly. My friend is having Jevtana+carboplatin for liver mets. He goes in for 1-2 liters water/electrolyte infusions routinely a few days later.

Is pain from bone mets? My hubby felt same way thru this chemo. My hubby last December was almost in liver failure and doctor put him on carboplatin. This chemo saved his life, but recently stopped working. New MRI shown same as your hubby with tumors bigger and several small ones. Jevtana really doing nothing. We knew our options were gone and that's not good with the liver. Hubby on a flight to Germany as I type! He's going to get AC225-PMSA treatment that is yet FDA approved. Still in clinical trials in States, but we don't have time. Very promising in many men!! This treatment is in Heidelberg, Germany. Also Africa and Australia.

I am sorry to hear of your husband's situation. No, you are right, liver is never good. I hope that the treatment in Germany can help him. You see, I think as long as the quality of life is good or at least acceptable you can try whatever you want, but when the quality of life is gone it is time to stop treatments I think. I hope this time has not come for you yet and that the German treatment will work.

I pray it works too! The fear is always for how long. We just try to make the most of every day. My hubby is a fighter with lots of hope and will to live. Can you believe he has worked through this whole thing. He loves his job and finds it a good distraction from thinking about having cancer. If we can make it through a day without taking about it or focusing on it....he feels that day was a success!

If he is advanced stage, why is he still working? Go on disability. File for Medicare disability later. Stay home. Fight the cancer battle with a lot more free time.

ToniTbird
ToniTbird
in reply to abmicro

He is stage 4 Gleason 9. He's in the Navy and suppose to retire in July 2020. He loves his job and feels like life is normal when going in and hanging with the guys! I think it keeps him going.

abmicro
abmicro
in reply to ToniTbird

Sorry to hear he is having a tough battle. If you are going to Germany for AC225-PMSA treatment, it is good news. It could help. I was advised to do the same after completing a clinical trial in LU177, 5 infusions, and getting a mild response on both soft tumors and bone tumors. The UCLA oncologist who ran the trial said AC225 is stronger and might work better on bone tumors, but I cant go to Germany because I can afford to pay for the treatment.

abmicro
abmicro
in reply to abmicro

correction, cant afford, not can afford.

ToniTbird
ToniTbird
in reply to abmicro

Yes. He tried for the Lu177 trial last December and was put into the control group so no treatment. What he got in Germany was a combo of Lu177 and AC225. It is expensive but we figured over all will cost like getting a brand new car. I would trade all that I have for a chance for him to be better. In our case with the liver mets...if he didn't get this treatment....he may not make it until Christmas!

Oskie53, I am so very sorry to hear of your husband's situation. My heart goes out to him, and to you as his wife and carer and the one whose heart is breaking to see your husband like this.

I have no experience with the Chemo drug you have mentioned. My husband was on Carbo Platin and I know of many men who are on a combination of Taxatir and Carbo Platin when there is liver involvement. I will never understand why oncologists leave their patients on Taxatir for so long when there are so many mets in the liver.

Anyhow, I do agree with you that your husband should have no more of this treatment. He could probably tolerate it, but what for? Why diminish his quality of life so much? No more treatment, only palliative care (pain control and symptom control) would be one way to go, or else you can ask your oncologist if he could change the drug to Carbo Platin and see how that would work.

Love and hugs to you both! Mel.

I have had 16 infusions of the chemo combo Docetaxel/Carboplatin for 20+ liver lesions and numerous lymph nodes. Been in this battle for over 7 years, now 72. Three rounds of chemo (2 rounds of 6 cycles each and now 3rd round of 4 cycles).

During the current round, MO added back Xtandi plus the chemo. Had previously used Xtandi alone 3 times.

Begin each chemo infusion with a 30 minute infusion of Aloxi which prevents nausea, and it works.

End each infusion with On Body Injector of Neulasta to boost white blood cell count.

All of the above has worked fantastically for me. PSA is .2, liver MRI has lesions 50% smaller and pelvis CT has lymph nodes normal size.

Best wishes. Never Give In.

Mark, Atlanta

ToniTbird
ToniTbird
in reply to vandy69

Wow! My hubby goes through treatments like water!! I wish he responded as well as you have. Goes to show you that every case is so different! My hubby has done all that and PSA now rising. Did MRI of liver and has about 20 tumors and 2 are huge. PSA 370 3 weeks ago and 2 days ago in Heidelberg PSA 790!! Chemo has stopped working.

Hubby in the Navy in Pensacola, but we have a home in Atlanta and moving back for retirement July 2020... God willing!

Where do you go for treatment?

vandy69
vandy69
in reply to ToniTbird

Hi ToniTbird,

Yes, we are all different.

I am under the care of Dr. Vasily Assikis at the Piedmont Cancer Institute in Atlanta.

If you are in Germany, has your husband tried PSMA 617/Lutetium 177?

Mark

ToniTbird
ToniTbird
in reply to vandy69

That's why he was there to get that treatment. He left ATL on Tuesday and just got back last night.

To Oskie53,

You stated the following in your previous post:

"He has a medical practice he needs to start closing and commercial property that needs to be sold."

If he is in the medical field (doctor) he should know better than to continue working. He must muster up all of his energy in fighting the monster.

Good Luck, Good Health and Good Humor.

J-o-h-n Wednesday 11/13/2019 10:00 PM EST

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