Hi all, looks like I will be starting triplet in mid October. From what I have learned here since I joined is I should be very grateful for that and I am......but, I gotta be honest, I am kind of nervous about what the chemo will do to me. 6 rounds over 18 wks.
I am a positive person and will fight this.
Can some folks speak to their experience with Dexa?
Congratulations on approval for triplet. (I'm assuming you're already on ADT - you might have mentioned this before but I can't remember.)1. Dexamethasone is great (if you are on Prednisone then dexamethasone is swapped in for a few days). I'm not kidding you when I say it made me feel "like a million bucks".
2. As for the chemo (will it be Docetaxel? I also did the six sessions over 18 weeks), and as noted in other posts here, consider fasting at full 48 hours, one day before and one day after. It's not so hard to do (you could try practicing ahead of time - I found eating a high fat meal ahead of time to be helpful - if you're not used to it and you eat a lot of carbs prior than for sure you will get super hungry).
3. Then there's the whole frightening risk of neuropathy. I completely avoided this and hopefully you will too. I have written about the silly bags of ice elsewhere here. But I was very assiduous on making them work.
4. Over the 6th sessions I had only one problem, which was a needle that wasn't perhaps perfectly inserted and I got a odd burn mark in my arm. But it went away.
5. I listen to podcasts, but the hour and a half goes pretty quickly. And I was careful not to move my arm. Don't count on doing anything other than lying there.
6. I have read here here about the person that gets the infection associated with chemo and for which you have a special injection, or is it a pill, I can't remember. Apparently the rates of this side effect are fairly low.
7. Remember that your medical oncologist assesses you as being strong enough to endure the triplet therapy! This is fantastic!
8. I can't remember (🤪) if you are on Firmagon or Lupron or whatever for the ADT?
9. My PSA took 8 months to nadir. Through the administration of the chemo it kept falling. And I have been very fortunate that it has stayed there (19 months so far, k''h). I stopped taking my hydromorphone pain pills after the first two chemo episodes.
10. So I've been very fortunate - I read here about people who have not had the same positive results.
11. I only really started exercising and being active after the end of my chemo. And now I am trying to exercise more and more and more intensely. Might be something you can research as to whether exercise is a good idea during chemo. My lay person's thought on this is that this might be a good idea, really good idea. But maybe not the day after? If you can research this then you can share it with us.
12. I think I was quite tired during the chemo, especially the first of the three weeks. Overall I'm wondering if I'm an outlier or if all the hype about chemo is almost a self-fulfilling fear. To be clear obviously some people have a very rough time.
So - a big success for you in terms of results - and in terms of tolerability - and in terms of minimal side effects.
Thanks for the note.
I am on Lupron (3mth)
It will be Docetaxel (and yes Prednisone and I believe dexamethasone)
Good point on maybe having a podcast or something
I do exercise now and will try to keep it going
I will look into fasting
There are meds for the infection risk - I dont recall what they are right now
I am going to try to continue working through this (I do IT so not physical but pretty mental)
Did you have to stay away from everyone and all those things to ensure you don't pick up viruses and the like?
1. Question for your MO - "why Lupron and not Firmagon?" - see my notes elsewhere as to the difference. If the answer is "they are the same but one is more convenient", that's not a great answer. It may be that Lupron is the best for you. But they are not the same although TA says the result is the same. You are young and you have to consider that you want to be in this for the long haul. You are fighting not only the cancer battle but also battles against cardiovascular disease and osteoporosis.
2. I'm sorry I don't know what "IT" is. And as for the mental aspect, that's great for your own morale and for relationships with your family and friends. And there's so much hype about keeping a good attitude. Puts a lot of burden on people. And there seems to be research that having a good attitude and positive thinking well and during cancer makes Zero effect on outcomes. My suggestion is that you have things you can do and decisions you can make concerning the best you can do for the physical aspects of prostate cancer. And that that is completely separate from mental health (except of course in extreme circumstances). If someone asked me I would say not to confuse mental health work with the work of managing prostate cancer. The two kinds of work are both important for sure.
3. As for viruses and everything and staying away from people, my sessions were at the tail end of masking etc. I don't remember doing anything special, we aren't doing a lot of socializing right now unfortunately anyway. I do not remember being worried about that.
You may want to read this and look at his other posts. He did triplet and got radiation, and is doing very well:
healthunlocked.com/advanced...
Thanks alot Tim.
I had the same regime. Chemo with dex followed by radiotherapy and now on ADT plus apalutamide.
Regarding the dex, the first time I used it the morning of my first chemo session it made me dizzy and I was slurring my speech. I just felt sick. However for subsequent doses I seemed to get used to it. I did notice a bit of a slump four days after each chemo session when the dex wore off.
I used the cold cap regime and didn’t lose any hair. I used to put my headphones on and play AC/DC for the first 10 mins to distract myself because it can be painful.
I used Neulasta but still got a bad infection 3 weeks after it was all done and ended up back in hospital on IV antibiotics. So even when you feel good your white blood cells can be hit. Also my taste was pretty bad for about 7 days after each dose and was always glad when it came back to normal.
The last week before the next dose I tried to do something nice like book a restaurant. It helps keep the spirits up. I also went out skiing 3 times during chemo and worked towards the end of it. So while it is not pleasant you don’t have to put your life on hold.
Best of luck with it all. Lean into it and it will be over in no time.
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