So Confused

[bglendi53]

I was taken off Docetaxel effective Jan 25th after 4 rounds did not help. My last round was on January 10th along with a Lupron shot.

So it's been about 5 weeks of getting no treatments, so the docetaxel should be long gone from my system. But 5 out of 7 days of the week lately I feel like absolute crap. It feels like a really bad hangover or even the flu. Hardly any pain just nausea and extreme fatigue. My hemoglobin is 9.8, but the hemotologist doesn't seemed concerned.

I start Pluhvicto on the 13th and Xtandi the following day. I'm concerned I will feel even worse.

Anyone else ever go through this or have any ideas?

[Poowater]

Talk to your oncologist.

[Spyder54]

we are the same age, I was Dx in Oct 2020. I hv been on Firmagon, then Lupron-pred., and Xtandi then Zytiga ever since. I have not yet had Docetaxel, as that SOC began mid to late 2021 with proof that Docetaxel upfront extends life.

There is a lot missing in your Bio, and info above, so it is difficult lean more of what is happening with you. Normally Docetaxel would be 6 treatments every 3 wks. Im surprised they would then put you on Pluvicto (LU-177) so quickly.

Hope you find a path that brings you many high quality years. Best, Mike

[bglendi53 in reply to Spyder54]

My PSA kept rising on Docetaxel along with an increase in bone Mets, that's why they stopped the chemo and moved on.

[Tall_Allen]

You didn't suddenly stop taking steroids, did you?

[Poowater in reply to Tall_Allen]

A good point.

[bglendi53 in reply to Tall_Allen]

I have not been on steroids since they took me Zytiga in October, and I did wean off the 5mg over a period of 2 weeks

[EdBacon in reply to bglendi53]

I, along with quite a few others on the forum developed adrenal insufficiency after Zytiga. If you had it, you would have a lot of the symptoms you have now.

I think anyone who has been on Zytiga should have their morning cortisol tested. My doctor agreed, but only after I asked. Mine was 8 and that is too low to function without supplementation. Also really easy to test by taking 10mg of Prednisone, if you feel significantly better after that, there's a problem.

[bglendi53 in reply to EdBacon]

Neither my oncologist or hemotologist has said anything about an adrenal insufficiency. I'm going to ask that question, thanks.

[Tall_Allen in reply to bglendi53]

They almost always give steroids with chemo.

[bglendi53 in reply to Tall_Allen]

I had two or three things injected before the actual chemo, maybe one of those was a steroid. I just can't rembember.

[Tall_Allen in reply to bglendi53]

They often give a big dose of dexamethasone at the start and maintenance with prednisone. Your oncologist should know.

[bglendi53 in reply to Tall_Allen]

I have quite few notes, I'll see what I can find.

[EdBacon]

This sounds very similar to what I experienced while I was waiting for Pluvicto and had no treatments. Only difference is I also have pain. My guess is it's not from the previous Docetaxel treatment, but it's the cancer progressing. I'm guessing you've also lost your appetite, may also be losing weight?

Anyway, hang in there brother! If Pluvicto works for you, it's likely this will reverse as it did for me. I had lost around 10 pounds, constant nausea, little appetite, felt extremely weak and often just lying around all day not even getting out of my pajamas.

Since Pluvicto almost 2 weeks ago, my appetite and energy level has come back. It's really night and day for me. Hope things turn around for you too. Please let us know. Wishing you the best.

[bglendi53 in reply to EdBacon]

Yea, sounds exactly like what I'm going through. My wife made me a ham and turkey sandwich yesterday and I couldn't even stand to look at it.

I did wake up today with pelvic and sacroilliac pain that's about a 5 out of 10.

I've lost a little more weight but I already lost about 35 pounds over the past 6 months. Hopefully Pluvicto will make a difference.

[EdBacon in reply to bglendi53]

I was also sleeping more than normal.

I have a walker and my wife pushed me into my Pluvicto treatment sitting on the walker I was so bad.

It didn't turn around over night, but after a few days I noticed I started feeling a little better, less nausea and a slightly improved appetite. Most of my pain went away initially, but then returned although TA said it is most likely from the radiation killing the cancer. I think that's right. It's hard waiting for sure, I had to go 2 months from when chemo failed and it was really tough. But the day will arrive and help will be on the way. Wishing the best for you.

[bglendi53 in reply to EdBacon]

@edbacon I appreciate the feedback and it gives me hope that things can get better.

[EdBacon in reply to bglendi53]

Things can really turn around with this treatment. I have to say, I'm impressed so far.

[MateoBeach]

Docetaxel poisons the whole body to some degree and that can take a long time to recover. But it gradually does. Just do what you can each day and take care of yourself. (Eat!)

The pains are not from the chemo but from the cancer, no doubt. Hopefully the Pluvicto will get after it strongly. Great to have such a treatment option now.

[bglendi53 in reply to MateoBeach]

The cancer has definitely been spreading, but I've been pretty lucky with the pain. Its mostly just complete fatigue and overall feeling just lousy.

[TeleGuy in reply to MateoBeach]

I agree with both of Mateo's points. It's not whether the docetaxel is out of your system, it's how long it takes your body to clean up the damage it has done, both in terms of cleaning out dead cancer cells but also your recovery of things like hemoglobin. I'm six weeks past chemo and find myself really fatigued after doing things that I think are "normal," and it takes my body days to recover from exercise.

I also had a great run after doing Lu-177 radioligand therapy so all the best to you on that!

And check your pill bottles to see what steroids you were taking, stopping abruptly can cause a lot of fatigue, and if you've been on something for more than a few days it can take a long time to recover. You need to wean off them slowly.

[bglendi53 in reply to TeleGuy]

Yea,rhat makes sense. I know my hemoglobin is 9.8, which means I'm anemic, but the hemotologist is concerned until it get below 9. So I have no testosterone, I'm anemic, my hemoglobin is almost4 points too low, and my hemotologist says she wants me to exercise more. I can barely get out of the chair and she acts like it's nothing.

I haven't been on any steroids since October, and did wean off them for two weeks.

[Gl448]

How did they determine the docetaxel “did not help” after 4 rounds?

PSA? Scans?

Just curious.

[bglendi53 in reply to Gl448]

PSA kept going up, and scans showed increase in mets

[EdBacon in reply to bglendi53]

My experience too after my last chemo. My pain also went up. My PSA was going up like a rocket from 60 something to 243 in less than 2 months. AlK Phos jumped up to around 350, crazy.

[bglendi53 in reply to EdBacon]

My pain level has been more than tolerable, although today I have a pain level in my pelvis and sacroilliac of about 5 out of 10. But combine that with all the other symptoms and I'm pretty miserable.

[CAMPSOUPS in reply to EdBacon]

Same experience I recently had. Much different than my Docetaxel experience 3 years ago. My PSA was rising irrelevant of the chemo and I developed met pain in hips and femurs enough to negate comfortably watching a movie let alone go to sleep.

This thread will cause me to have my cortisol checked. I had a horrendous appetite issue, dry heaves, gagging at the thought of food thing going on for about a month which started about 2 weeks after the 3rd and last chemo infusion. (could be cancer progression, chemo, steroids thinning stomach lining, or adrenal gland not kicking in )

Thankfully Xtandi which I never had brought the bone met pain to almost nothing after about 6 days. Stomach was getting better before Xtandi and is so-so to this day but still isn't quite right.