Sadly, both Zytiga and Xtandi (Enzalutamide) have failed for me and I will begin chemotherapy on November 8 th
I do have a unopened sealed, 30 day supply of
Xtandi (Enzalutamide) that I paid 10% deductible on if someone can use it !
Fighting the good fight !!
Robert
Well... Chemo often works after these drugs fail, so don't give up hope.
I certainly hope you are right,cause Myhubby58 also did zytiga and xtandi and now taxotere..
I'd keep it for a possible rechallenge later. It might work again after chemo.
Chemo is a good choice. You should discuss doing Provenge since you are castration resistant. There a couple of clinical trials with modified niclosamide which could resensitize the cancer to abiraterone and enzalutamide.
Hey Robert, throw the kitchen sink at pc . Some have had great results from chemo . I’ve yet to have that pleasure myself . Others can assist you in how to get thru it better . Good luck moving past chemo and May it serve you well . 🙏
Thank you for your encouraging words !!
Sorry to hear, chemo wasn’t that bad for me , good luck with the monster 🙏🙏🙏🙏
Good Tuesday Morning Robert,
I have had 2 rounds of chemo (6 cycles each) with Docetaxel/Carboplatin combo. After each round we rechallenged with Xtandi (which had previously failed) and I got about 5 months new use before Xtandi failed again.
Now in 3rd round of same chemo (3rd cycle last Tuesday) and I am taking Xtandi plus chemo. PSA has dropped from 48 to .2. Talk to your Med Onc.
Best Wishes. Never Give In.
Mark, Atlanta
Good morning Mark !
Wow… You certainly have “been down the road”
How bad was chemo for you if at all? We had planed trips/cruising before knowing I would be going into chemo . Now they will fall in between treatments, is that realistic?
All of us react differently from chemo, but the common SE is fatigue. Fatigue usually begins 2 to 3 days after infusion, if you have been given a steroid the day before, the day of, and day after chemo. Fatigue lasts several days, but typically gets worse as cycles proceed. You may need more days to recover from cycle 6 than from cycle 1.
If you have trip insurance, don’t pull the trigger on it yet—see how you react to your first chemo.
I have a port in right chest which simplifies infusions. Med Onc proceeds chemos with infusion of Aloxi to mitigate nausea and I leave chemos with an On Body Injector of Neulasta, which boosts your white blood count. Per Med Onc, most risk of infection from others is days 7-10 after infusion.
Mark
Good morning Mark and again thank you for Sharing your journey. Did you end up losing your hair and or did you use any kind of ice/cooling cap etc.?
Good Wednesday Morning Robert,
Have lost hair each time, beginning around the 17th day after first infusion. I have always had lots of straight silver/gray hair. First time it came back wavy. Second time it came back curly and wild like a sheep. Who knows what will happen this time? Always same color.
We have iced my hands and feet to mitigate neuropathy. Med Onc also recommended taking daily oral 100mg B6 for same purpose. Hands fine, but feet have suffered some neuropathy.
Best Wishes. Never Give In.
Mark
Thanks again Mark I really really appreciate your Intel !!
I don't know how long your Zytiga and Xtandi did work, if it worked at all. My Zytiga failed after 8 months. Then I had 5 chemo shots with Docetaxel, and Psa went from 12 to 50, so it failed. Then I had 4 x Lu177 shots, Psa went from 25 to 1.6 at 2 months after 4th shot. It was 0.4 at 2 more months later. Xtandi was added during Lu177 after 3rd Lu177 shot, because its thought that it helps Lu177 work better. Even if chemo fails, it may make cancer respond again to Zytiga or Xtandi, so maybe hang onto the spare Xtandi you have.
I live in Oz and got Lu177 in Sydney from Theranostics Australia. They did professional clinic work.
I have Psa next week and see my onco doc, I hope Psa has gone down more.
I feel OK and am cycling 180km a week. If I didn't have Lu177, I'd be in palliative care now.
Patrick Turner.
Good morning Patrick !
My story is very similar to yours ! I actually went out to San Francisco to begin LU -177 in August but the pharmaceutical company was sold and the contract had to be renegotiated . I am “first on the list“ as soon as the negotiations are completed .
Thank you for all the useful information and congratulations on your wonderful progress !
ROBERT
Well I didn't know Lu177 was available in USA anywhere because its still not fully approved. But here in Oz we are allowed to get it if chemo fails, even without full approval. But Germans invented the Lu177 method, its been around for 10 years, and enough is known about it.
There is some good research going on in Oz about why some men do not respond as much as hoped for with Lu177. They may have different forms of Pca, some responds and some does not, and this type of Pca is not seen on PsMa scans, but its there, and in my case there seems to be none or extremely low amount of non respondent Pca. I'll know if I have non responding Pca in future. There is big research at PeterMac in Melbourne about Pca to look at the problem of "variegated" Pca.
Dealings between companies can take months, and cancer waits for nobody, so if you need to have Lu177, then you must go where its available, so many in US go to Germany. Maybe cost of Lu177 in US goes higher when the dealings are completed. When I had mine there were guys who had flown in from US to Sydney to get it. Cost here is usd $27,000 for 4 shots, plus you pay for at least 3 x PsMa scans you can get in US, and for initial consult with docs via skype. Between referral and first Lu177 shot was only 6 weeks.
Good luck with chemo. I found the chemo ward at hospital was full of sad ppl who were not expecting to live long. But what can be tried ought to be tried.
But there's no point continuing if Psa dos not go down after 4 shots, and imho, better to quit to try something else.
Patrick Turner.
Good morning again
I was going up to San Francisco for a clinical trial with LU –177 when the company was sold.. I will have been disqualified for that trial but there’s a second trail and apparently I am “1st on the list“ as soon as the negotiations are completed. This particular trial requires that I have chemo therapy first. thank you for the great information.If chemo fails for me I will be heading towards Australia!
Thank you Patrick!!
Same deal with me and chemo worked great. Side effects not bad at all, especially early cycles. Did 8, had a couple of months off then doing more now. Life, work going on pretty much as normal and chemo working well.
I would jump right in if I were you. Hopefully you have similar results. Good luck.
Thanks Paul very encouraging!
Robert- It must be hard to see some of the treatments fail you so quickly, But- as ithers have said- Hang in there. The next treatment (chemo) may work well and may also permit use of drugs that previously failed you.
My hubbie had 6 cycles of Docetaxel and tolerated it VERY well.
Took his PSA down from 320 to 1.9,
A bit more fatigue than normal , lost taste buds (back now) and a bit of neuropathy in left arm and leg, but ok now, that was given Aug18-Jan19,
no sickness, I was also very surprised that he got through it with very little side effects (hes 62 and quite fit)
So don't stress, get some one to go with you, and praying for you that it works well, its not as scary as you think.
wishing you great success
Kim
Thank you so much Kim that really helps me stay encouraged!
I am in my third chemo schedule. Both Docetaxel and Jevtana were not effective but my Onc believes I am dealing with small cell carcinoma because my PSA is decreasing but lymph nodes are enlarging. Just started treatment with Carboplatin and Etopiside, 3 day infusion schedule each time. You fight it with whatever you can and hope to be here as more and better drugs hit the market. Lu-177 May fast track and it could be helpful as well as other therapies. Stay strong and confident!
Thank you for the encouragement and the boost!
Battle with be on a different front now. Good Luck.
Robert
If you had added a weekly sodium ascorbate IV to your Xtandi, you may have found another year or two of low PSA before you would even need to consider chemo. Since you have a full box, take a couple of capsules the night before the drip, and that means you could have a year's supply there.
You have just a few days to see if this works for you and you can get a better quality of life too with less side effects. MOVE! You can get in 2 or 3 IV's in the next week as an emergency process, and delay chemo to get a new PSA reading if you are not convinced (the PSA goes up with the kill from the IV, so you have to wait about 3 days for the PSA to decay). The kill will also increase pain (dead cancer cells go rotten and cause inflammation which causes pain for a couple of days - this is a good sign it is working). Good luck to you!
Good morning David.. looking into all your great suggestions!
Hi DavidHealth,
My husband is now seeing PSA rising quickly after being on Xtandi for 10 months. We may have to consider chemo, keeping it as a last resort. Can you tell me if the weekly sodium ascorbate IV you mentioned is the same as high dose vitamin C IV?
Yes - It is commonly called Vit C, but that in fact is highly acidic and will `fry' the veins if injected. Sodium hydroxide is added to the acid to neutralise it and it them becomes "harmless" sodium ascorbate with a Ph of 7.
Try 25 grams and see if there are any problems and how good the kill is. You need PSA readings to do the maths. Doing 50 grams will up the kill quite a lot, and a good idea to turn that PSA around. Then the Xtandi dose can be cut back as well, and that also helps its side effects. Good hunting!
I didn’t do that myself but look above on my messages .
Kill the tiny bastards while keeping your eye on the nurses... and dream away.......
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 10/29/2019 7:20 PM DST
use ice on your finger tips during infusion! good luck <3 my dad had positive results
Just done with my 4 th infusion of docetaxel ( out of 6 ). So far my experience has been very bearable . Usually Day 4 th to Day 6 th after infusion are the toughest . Fatigue, bloated ness , bone aches. Rest when you must but do try to get some exercises whenever possible even if it just doing walking. Don’t become a potato couch. I even go to the gym to do some weight bearing exercises too. It helps me a lot . Have a positive expectation of good. And have strong faith in GOD. Will pray for your success.
Thank you so much!
Robert, upon diagnosis, I immediately did 6 cycles of chemo. It brought my PSA down to 0.1 from 415. I was in a lot of pain but the chemo took care of that. I tolerated it well. The first 5 days I experienced fatigue. After 5 days I started to feel much better. I did light stretches and walked a lot. After 32 mos, PSA is now 1.6 and Onc says provenge/xofigo is Next. if all the subsequent treatments fail, I will not hesitate to do chemo again. Best wishes.
Nick- dx March 2017 age 52 Gleason 8
Very encouraging Nick thank you !
Best of luck on your journey and blessings !
The replies to this post have given me lots of ideas (thank you). Chemo is our next resort (I think), so I am keen for any info in it too. I found this program on the ABC (In Australia) pretty convincing: abc.net.au/catalyst/exercis...
It is in the benefits of ‘targeted exercise’ during chemotherapy. Also look up angiogenesis in Ted Talks... diet can help stop the tumours (tomatoes in particular). And the idea of cold packs on hands and feet may not prevent neuropathy completely but I think it is worth a shot because the cold slows the circulation of blood to those areas (which don’t need the toxic chemo) so there is less chemo taken up in the hands and feet, therefore less chance of neuropathy... Good luck! Enjoy every day, and make that ward a happier place!!
Thank you!
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