I know not everyone has the same reaction, but I'm going to start Taxotere the first of May. I know these medicines supposed to last for 2 years but when I was first diagnosed I got the testosterone production halted, radiation, and started on some pills. No idea what they were. They only lasted about 9 months. After that, I had 9 months of PSA going down because..... reasons? Then Casodex failed in a month, Zytiga lasted fo about 9 months, I came back to America started Xtandi along with Lupron and Xtandi stopped working. Lupron is still doing its job though.
Positives: I probably have a lot of dormant cancer cells that are fucking things up right now, and the Chemo is going to kill those mother fuckers off. It will get me at an even playing ground with this thing. I'm just hoping this can get down to "not detectable", and
The doc said he was going to send off my issues with medicine not working for study to get possible immunotherapy. I don't know much more than that. I can find out later.
I'm not too worried about how I can handle this.
Negatives: If I'm going to go I'm good with it, the only thing that really bothers me is I finally found the one for me, and I think I'm the only good man she's ever dated. I don't want to leave her since she gave me the spirit to fight, and I'm not planning to.
Don't worry I'm not staying up at night crying my eyes out. I got that out of the way after Xtandi stopped working after. Admittedly getting the percocets to help manage the shit mets pain helps a lot so I can think better too.
Basically, I guess I have two questions here, and I'll continue to have some more as I start up with Chemo too haha.
1) Have any of you guys had chemo clear up problems and you were good to go? I've searched and mostly came up with bad experiences but looking for good stories if possible.
2) Am I really going to start running out of options if a couple of rounds of chemo don't work? I don't think I'm going to check out next week but I would like to get an idea of a timeframe of when I need to start to be concerned. If I'm still too far from needing to worry about things, that's all you need to say.
Hopefully, I am clear with what I'm asking here.
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FinalBossMatt
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My experience with chemotherapy was that the side effects were tolerable and it reduced my pain along with helping to get my PSA down. I felt better at the end of each successive cycle.
I did my 6 cycles of chemotherapy early along with Lupron so it wasn't just the chemo alone. But the side effects are quite manageable, it's mainly the first 5 days that you feel crappy. It's no worse than a medium to bad cold and better than some of the flu viruses I've had. And you start feeling better after a week.
In terms of options left, you have 2 chemotherapies: Docetaxel and second-line Cabazitaxel. Additionally, there is LU-177 PSMA 617, soon to be approved in the US. Radium 223 is also available for bone mets.
Have you had genetic sequencing done? That might open up a targeted treatment option for you. And of course there are clinical trials.
So you still have options available. You might also be able to rechallenge one of the anti-androgen drugs after chemo and get some time out of that.
Just speaking from my own experience, it's best to stay focused on where you are at right now whether than "what if this fails down the road..., etc." You can make decisions if/when you get there but the meantime, protect the quality of life for the time you have left by living in the present. I've had to learn this the hard way.
I get you on the last part with "living in now," and believe me, I am doing it. The thing is I'm a strategist and tactician. I like to be prepared ahead of time and have backup plans for backup plans.
I'm not going to let it command my life though. Like if everything keeps running bad, I'm not going to sit and wait to die. I'd probably fly my girl over here to get married so legally she can be financially okay when I'm gone. If I just say, "Fuck it, I'm going to die so why bother?" I might end up lasting for 10 more years and I don't want to waste it wallowing in "what it's" and self-pity. I want it to be my best, especially since one year something might come out to manage this for another 10 years.
In my case, diagnosed with #stageivpca in 01/2015, PSA at 840.2, GL7, detectable Mets in L ureter lymph nodes.
With the CHAARTED research just coming out that showed ADT and Chemo gave 17 more months than waiting for ADT to fail and then chemo.
Started Lupron/Casodex and then two weeks later Taxotere for a total of 15(protocol said 6, but MO saved me by giving me 9 more!). PSA dropped to 0.7 at the end of 2015. 2016 started 2gm/day Metformin and Lipitor. Hit a PSA nadir in the Summer of 2017 at 0.1
Took Lupron "holiday" and restarted when it hit 10.
After the Lupron proved ineffective, I started Abiraterone in 01/2020, then Xtandi in the Fall. Both failed to slow the PSA rise 😭
Kaiser MO approved a Taxotere rechallenge and had 1st of 6 on New Year's Eve day 2020. After the completion, the subsequent Axumin scan showed that the two new pelvic lymph that lit up before had responded.
PSA down to the lowest since 04
2018 at 3.1
With each chemo, I fasted two days prior and sipped tomato, curry, veggies broth. I'd also walk that evening after chemos, to to get it circulating throughout my body.
I still do IF(Intermittent Fasting) daily from 9pm to 1pm the next day.
Some fatigue with the chemos, bad taste, mild neuropathy, and hair loss. Still dont have eyebrows 😂
So, hopefully your PCa will respond well to the chemo and kill off those MFer terrorist cancer cells
Oh Gawd, lose my eyebrows? No thanks, I'll take cancer. ;-P
Seriously though, glad you're doing good, and glad to know there are still options. I just need to work on them in my personal life to make sure everything is smooth.
Had chemo 6 rounds in 2018 with hardly any side effects, lost body hair but not on my head, followed the diet, worked 20 hours a week, my oncologist wishes his patients had my attitude. When mentioned chemo I did not hesitant , got a 8 inch pile on chemo, diet and anything on my disease, knowledge is power. Good luck and keep fighting.
My side effects with docetaxel were very severe - ended up in hospital with febrile neutropenia, BUT that was 4 years ago, and I’ve been off all treatment since then. PSA has risen to 0.47 from 0.01 in that time.
I was diagnosed stage 4 metastatic 8 years ago, Gleason 9, so it was definitely worth it for me.
Taxotere can be hard on the IV access site. In my opinion, getting a port installed is very worthwhile. There are two downsides. 1) There is an infection risk until the incision completely heals, and 2) the port has to be flushed once a month as long as it is in place.
Chemotherapy with Taxotere was not nearly as bad as I feared when I started. The side effects do build up over time, though. Here are the notes I have from when I went through it:
1) neuropathy - tingling or even pain in feet and hands
What you can do to mitigate it: chill the feet and hands during treatment
Some go so far as to use ice in booties or mittens
2) mouth and tongue - sores, sensations, and changes in taste perception
What you can do about it: suck on ice cubes during treatment
I didn't get any sores, but my tongue would feel "scalded" for about a week
Changes to how things tasted were very noticeable, and thankfully temporary.
3) nausea - gradual build-up as treatments progressed
What you can do about it: ginger for mild cases. I tried ginger ale, ginger tea, candied ginger, and ginger candies. All helped.
Bland foods were easier.
Later in the treatment, when the nausea was worse, I took a prescription medication "Zofran" (generic is ondansetron), and that worked very well at relieving the nausea. I probably should have taken it more often instead of trying to "tough it out."
4) fatigue - gradual build-up as treatments progressed
What you can do about it: move, exercise, get into a routine, push against limits, keep morale up, rest when needed, stay hydrated, keep up nutrition.
5) hair loss - lots of variation
I lost body hair first, then scalp hair. Later lost nose hair, which felt odd, had to blow my nose a lot more. Later lost half my eyebrows, and most of my eyelashes.
The good news is, although it took some time, much of the above was temporary for me. It took about a month after my last Taxotere treatment for me to feel normal again, and the hair did come back. I still have some lingering tingles in my feet, but it's not bad.
One other thing: Each night before a Taxotere infusion I had to take an oral prescription steroid, dexamethasone. Then again the morning of the treatment. And then more dexamethasone by IV infusion before the Taxotere infusion. The result was that I was wired the rest of the day, had insomnia that night, was wired the next day, and then energy and mood crashed the day after that. Every one is different, but be prepared for similar effects.
No one tells you about the nose hair. I lost that right away, the constant sinus drip is annoying. I do the modified fast 48 hours prior and 24 hours after chemo, seems to help with the taste, but also do ice chips and ice bags, no neuropathy so far. (4 down 2 to go.) Fatigue is mostly day 3-7 after and then seems fade until the next round. I still work full time and try to ride exercise bike a few minutes each day and use some free weights to push back as much as possible. MD Anderson said chemo and ADT, then radiation.
Oh that will work for me. It looks like Tarantulas are crawling out of my nose some days. Haha
Hi…my experience with docetaxel was ok…I did the standard 6 doses starting Jan 2020. The main SE was fatigue…the rest were tolerable and gone in about a week after the dose.Since then, I’ve done Provenge, Xtandi, and I’m now doing Taxotere…have 6 doses under my belt and still going strong…I have no idea how many more doses of Taxotere I can take, but it has really slowed the cancer down…so I’m going to continue it until it fails.
That said, it’s really hard to know how long we have on this earth. I try not to think about it because a bad car accident could take me today.
I read your bio…really sucks to be diagnosed with PC, but at 41, bummer. I was diagnosed at 53, I’m now 57…I think 🧐
On the positive side, there are new therapies in the pipe…hopefully you have an oncologist who is really up to date…if not, find one.
Dr. Eugene Kwan at Mayo, Rochester explained the 6 rounds of chemo to me this way. "Think of your body as a lawn. It's full of weeds. The chemo is designed to kill all the weeds at once. Then, as they pop back, we can treat them individually with radiation." I think his explanation makes sense. I went through six 21 day cycles of taxotere. For the first 21 day cycle, I hit a low point about a week after the infusion. I was miserable for days, feeling like I had the flu. For the next five 21 day cycles, I smoked pot during the bad days. It worked. It took the edge off the pain. I'm not a regular user of cannabis so perhaps it worked well because my body wasn't used to it and it offset the fatigue and flu-like symptoms. During the first cycle I couldn't do anything during the "nadir". For the next 5 cycles, I continued playing tennis & golf. Once chemo was over, I got a PETSCAN once a year. Any reoccurrence of cancer was zapped with SBRT. This process has given me 6 more years of living. I'm still playing tennis & golf (badly) and enjoying life. I wish you well.
I’ll make it short and sweet... I was dx G9 stage 4, I was reluctant to do chemo but evidence of the survival benefit convinced me that it was foolish not to. For me it sucked, first couple of rounds weren’t too bad but 4-6 sucked. Afterwards my PSA remained undetectable for several years. So it was worth the suck. I’ve also been on and continue to be on several other therapies, check my profile, 7+ years now since dx.If you haven’t done so already be sure to get a Covid vax ahead of chemo so you get a full response, same goes for starting any steroid use associated with Zytiga.
First and foremost, congratulations on finding “the one” while you are still here and living. That is the best treasure even for however short or long of time. Appreciate and protect that every day.Chemo indeed does suck. But docetaxel not too much. Go with the flow and do what you are able every day. If neuropathy should start to appear, ask to stop it and switch to cabazitaxel. Here is some very good advice on chemo:
My experience was like many others. I drank those zero calorie fizzy waters to stay hydrated since water had a lousy taste. A key to avoiding infection is to insist on the Neulasta on-body injector after each dose. This helps build up white blood cells and could keep you out of the hospital. Try to exercise despite the fatigue. The veins on top of my hands were used for the chemo. No port required so I could keep swimming laps.
Unfortunately I got less than a year before reoccurrence. I am now on a combo of abiraterone and apalutamide in a clinical trial.
Did 10 sessions of Taxtere. Brought my PSA down from 30+ to under 5 and my alt phos to under 60. Did get rid of my "suspicious nodules" in my lungs and stopped bone met progression. Unfortunately after three months my PSA started to rise again. Doing a parb inhibitor next due to the results of my genetic test. I'm have a Brac2 gene. Sessions 9 and 10 were brutal. The first 8 weren't bad. Lost my hair, and toe nails. Kept my eye brows. Some numbness in feet. I had ice packs on my feet and hands for each session. All told I think it was worth it.
Sounds like we are in the same boat. Lupron, Xtandi, Zytiga, all quit. 09-2020, PSA 7 and rising. I am now mCRPC, STAGE 4. 04-2021, PSA 66. Pelvis bone mets pain has become severe. Started Docetaxel, 04-11-2021, not much hope, from what I have read may buy a little more time............... BUT, I have also spent the last 2 years studying, reading research, looking for something more than the doctors, "there is no cure". I came across Jane McLelland's book, How to Starve Cancer. I believed there was validity to the use of off-label drugs and supplements to actually cure cancer, mCRPC. On 03-01-2021 I started taking metformin, doxycycline, atorvastatin, fenbendazole, loratadine, curcumin, EGCG (green tea extract), berberine, quercetin, alpha lipoic acid, resveratrol, vitamin D 3, vit E, vit B 12. These have proved to negatively impact cancer by disrupting the metabolic pathways cancers use to draw energy supply. Some of them even enhance the effectiveness of chemo like Docetaxel. medical researchers all over the world are looking at this. Clinical trials are starting looking at the off label drugs.Does it work? 04-2 , PSA 66. 05-10 , PSA 26. Severe bone mets pain I had (bone scan showed rt. half pelvis solid black) is gone. Docetaxel was not supposed to work that well.
I can not begin to relate everything I have found, Would take a book like Jane's. I will give a few links as example:
Long term my problem turned out to be a blood clot in the leg a few years following the end of treatment. If you experience chronic pain during your treatments, make sure they follow up on it and diagnosis it asap.
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I lost that right away, the constant sinus drip is annoying. I do the modified fast 48 hours prior and 24 hours after chemo, seems to help with the taste, but also do ice chips and ice bags, no neuropathy so far. (4 down 2 to go.) Fatigue is mostly day 3-7 after and then seems fade until the next round. I still work full time and try to ride exercise bike a few minutes each day and use some free weights to push back as much as possible. MD Anderson said chemo and ADT, then radiation. 
Advice for next steps for 82 year old dad
Hmmm. My \"Good News\" is that my \"Bad\" news is not \"that\" bad.
Should/Can I take zytiga/xtandi et al without metastasis diagnosis
High T clinical trial update from a data point
