Update After 3 Cabazitaxel Treatments.

[Philly13]

I am receiving chemotherapy every three weeks. I had my 3rd infusion on Thursday, November 4.

The good news is that I have been tolerating Cabazitaxel much better than expected so far. I have been forcing myself to get on the elliptical machine in my house 3 to 5 times per week. The ignition is difficult, but once I push myself to get on the machine, I engage in aerobic exercise for 36 minutes to 1 hour with no problem. I always feel better when I get the exercise.

There have been a few side effects, but nothing too difficult.

Acid reflux is the most annoying. I have controlled it with Omeprazole and a few antacid Pepcid chewable. After the first infusion, I had a terrible coughing fit as I laid down on the 2nd night after. I didn’t sleep much. I was not disciplined about following instructions because I have always had an iron stomach and tried to keep my lifelong habit of not eating breakfast. I also did not start with Omeprazole immediately, even though it was prescribed. I eat more often and take the GERD meds. My voice is still smokey, but the coughing fits are gone.

Taste has changed. I am hungry, but it is more challenging for me to choose what I want to eat. Sweets taste better. I am eating well but not enjoying the experience as much.

My energy level is pretty good during the day, but it is a tsunami wave when fatigue comes in the evening. If I have something to do, I can rally and get it done. If I don’t have stimulation, it is easier to watch TV than to focus on reading. That is one of the reasons I haven’t spent much time on the HU board.

I have had a resting heart rate in the low to mid 50’s for decades because of aerobic fitness. It has moved up to the mid-’70s and low 80’s. When I get on the elliptical, it goes up fast but still does not get over 115 to 120 when I am exercising. Stamina for 60 minutes at a mid-level resistance on the elliptical is good, but sometimes walking up steps causes my heart rate to go up fast.

I get labs done before each infusion. That includes PSA. My PSA before the first treatment was 117. Before the 2nd treatment, it was 128. On Thursday, November 4th, before the 3rd treatment, it is 140.

I can’t decide whether to call this bad news or no news. I haven’t spoken to the oncologist yet, and I hope that PSA is flaring before it starts to fade soon.

I will be pushing for scans during the upcoming week.

They prefer to do a Whole Body Bone Scan and CT scans. I have no confidence in the Bone Scan because it did not give enough information while going through the immunotherapy trial. Lesions did not grow in size, but they were getting more intense. I have had annual Auximen scans from 2018 to 2020. They stopped in 2021. My instinct is to push for the Pylarify scan now. I understand Medicare is approving it.

I spoke to the Nurse Practitioner about that on Thursday morning. She said it was too expensive and wouldn’t get approved. I don’t like her, and true to form, I didn’t like her answer, so I cut off the conversation and will email the oncologist to express my thouhgts early next week.

Thanks in advance for your collective thoughts on what tests to evaluate the effectiveness of Cabazitaxel in a timely fashion.

Best

Philly

[Fiddler2004]

Hi Philly, wish I knew more about these things (2 years in). Has there been a discussion about adding Xtandi (enzalutamide) to your Firmagon or switching to Lupron/Xtandi combo. Why was Cabazitaxel chosen rather than Docetaxel? Good Luck over the coming weeks.

[Philly13 in reply to Fiddler2004]

My understanding is Cabazitaxel and Docetaxel are very similar. Cabazitaxel is newer and doesn't always get approved for first-line treatment.

[Tall_Allen]

The problem with switching scans is you lose the ability to compare.

[Philly13 in reply to Tall_Allen]

I suspect that will be the response from my oncologist. I also have seen some articles that say there are not a lot of people that know how to read Pylarify.

My serious question is how do you ever make a transition to a new and "better" treatment?

I am the patient dealing with emotions and anxiety over all of these things. In my mind, the comparisons weren't valuable during the clinical trial because they weren't able to see the lesions getting more intense. I took an MRI which told the story when the pain progressed far enough. I feel like there was a lot of time wasted while the oncologist and I were hoping and wishing the clinical trial would work.

My PSA is rising and wasting time gets riskier and riskier. I try to think that time is my friend because there are new developments all the time. In this case, my goal is to find a balance between the time to properly evaluate treatment, and figuring out it is not working, and moving on to Plan B.

Thank you,

Philly

[Tall_Allen in reply to Philly13]

Your question is: Is cabazitaxel working for you? You can't answer that is you switch scans now.

The other question is: how important is it that you identify the size and number of all your metastases? It is only important if it changes a treatment decision.

[Philly13 in reply to Tall_Allen]

I believe I understand the two issues raised, and it is helpful to put them in that perspective.

I wonder how many treatments before I should see progress. Is Cabazitaxel working if PSA starts going down in 4, 5, 6, or more treatments? Same question for the number and size of all of the metastases.

In my mind, staying in the same place, or seeing evidence of regression, would indicate another treatment should be considered.

I feel that staying in the same place is playing with fire. That has been the history since diagnosis in November 2017.

Thanks again,

Philly

[Tall_Allen in reply to Philly13]

Differences in the same kind of scan is a better measure of effectiveness than PSA. There is a metric called the "Bone Scan Index" that is sometimes used.

[Fiddler2004]

Are you able to make the switch to Lupron and Xtandi combo asap?

[Philly13 in reply to Fiddler2004]

I believe that I my Oncologist and others that I have spoken to have indicated they don't think that has much probability of being an effective treatment.

I don't remember the details and will ask again.

Thank you,

Philly

[Fiddler2004 in reply to Philly13]

Fingers crossed that they come up with a new plan...

[Walkingwell]

I'm considering Cabazitaxel and this was a useful post, thank you. Good luck with the treatment.

[DrRobin]

Wow it is close to my infusion: Cabazytaxel 3rd time & on Nov 4th. Only thing is they halved the dosage because of low platelets.Read a publication in NEJM called ‘the oncology conundrum, less is more’

Chemotherapy

Cabazitaxel (Jevtana)

25 mg/m² IV every 3 wk (TROPIC)

20 mg/m² IV every 3 wk (PROSELICA) Reduce hematologic toxic effects and Infections

O follow Tall Allen’s advice: it’s always good!

😇

[monte1111]

I was in the brig in Philly. Didn't get to see the town. Ignore this if Philly doesn't mean Philadelphia. Probably just ignore this reply anyway. Just letting you know I'm with you.

[Philly13 in reply to monte1111]

Philly is Philadelphia. Were you in the navy here?

[monte1111 in reply to Philly13]

Marines. Hung around Beaufort, S. Carolina awhile. Got bored and took a vacation.

[j-o-h-n]

If you weren't from Philly, I'd like you.............🤡

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/08/2021 10:11 PM EST

[SPEEDYX in reply to j-o-h-n]

Such brotherly love!!!

[monte1111 in reply to j-o-h-n]

I don't believe clown faces are allowed on this site. They shouldn't be allowed. I refuse to watch the movie IT. One of your cousins?

[j-o-h-n]

It's my nature............

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/08/2021 10:26 PM EST

[monte1111 in reply to j-o-h-n]

Brotherly love. Philadelphia. Took me a moment.

[j-o-h-n in reply to monte1111]

Actually two Greek (Hellenic) words: Phila = friend, Delphia = brothers...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/09/2021 5:33 PM EST

[SPEEDYX in reply to j-o-h-n]

κρεμώδες cream τυρί cheese

[j-o-h-n in reply to SPEEDYX]

A smear.......

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/09/2021 11:03 PM EST

[SPEEDYX in reply to j-o-h-n]

I will take it on a bialy!

[j-o-h-n in reply to SPEEDYX]

Hey Sam.... get me a bialy with a smear for the Gentleman reading the Hollywood trivia book....You remember him..... He's the one who knows all the stuff about stuff.....

Ok sir.... this one's on the house (Now what was the color of Ester William's bathing suit in the movie Bathing Beauty?).....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/09/2021 11:37 PM EST

[Philly13 in reply to j-o-h-n]

You have made yourself clear on your feelings about my wonderful city. That's OK i like and respect you anyway. This thread is like a Seinfeld episode. That is OK also. It is entertaining.

Good Luck and Good Humor to all!

[SPEEDYX in reply to j-o-h-n]

Since my TV is black and white I will say white!!!

[j-o-h-n in reply to SPEEDYX]

You're correct.... I have a B/W Dumont tv. Mine has a round screen with a magnifier in front of the screen. Unfortunately I only get the Dumont channel which shows the "Midget Tag Team Wrestling show" 24/7 which runs on a continuous Kinescope reel.

Good Luck, Good Health and Good Humor....

j-o-h-n Wednesday 11/10/2021 1:37 PM EST

[SPEEDYX in reply to j-o-h-n]

And the Honeymooners I have same TV....wrestling was announced by Vince McMahon Sr.

[j-o-h-n in reply to SPEEDYX]

Bravo......Magnificent.... Cheers and Applause........ Take a bow.....

Good Luck, Good Health and Good Humor....

j-o-h-n Wednesday 11/10/2021 1:54 PM EST

[j-o-h-n]

The city Philly is wonderful.............. it's the people I'm Knocking...........🤡

Good Luck, Good Health and Good Humor....

j-o-h-n Wednesday 11/10/2021 9:44 AM EST

[j-o-h-n]

Don't fret.......... I'm a NY Giant fan.......☹☹☹

This weekend they're scheduled to play my high school team... I'm putting my money on my High School....

Good Luck, Good Health and Good Humor....

j-o-h-n Wednesday 11/10/2021 9:48 AM EST