Now off Xtandi trial. Rechallenging w... - Advanced Prostate...

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Now off Xtandi trial. Rechallenging with Taxotere next.

StephjoeSteph4197 profile image

After a recent MRI, my husband was taken off the Xtandi trial. Scans showed uptake in spine. MO said PSA is no longer reliable indicator for hubby. We’ve followed the standard of care except for the trial drug. He is now going to rechallenge with Taxotere. I’d be interested to hear how taxotere as a rechallenge has been for anyone. Thank you.

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StephjoeSteph4197
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Tall_Allen profile image
Tall_Allen

Hopefully, it will resensitize him to Xtandi or Zytiga

sdigio profile image
sdigio in reply to Tall_Allen

That's interesting. He did well on Zytiga. Thank you.

sdigio profile image
sdigio

I will check into it. Thank you. He completed Docetaxel the first time in Oct. 2016. This time will be a re challenge. The doc said he will stay on it until it stops working, which sounds exhausting.

vandy69 profile image
vandy69 in reply to sdigio

Good Sunday Morning sdigio,

The treatment for side effects of Docetaxel continues to get better.

Here's what my Med Onc prescribed/suggested with recent Docetaxel/Carboplatin chemo:

1. Dexamethasone day before, day of, and day after chemo to moderate SEs.

2. Infusion of Aloxi first to prevent nausea and it worked.

3. Daily oral 100mg B6 to moderate peripheral neuropathy.

4. Iced hands and feet to moderate peripheral neuropathy.

5. Use Biotene products for mouth care.

6. If getting Neulasta, take Claritin for 6 days, beginning day before chemo, to prevent bone pain.

7. I took American Wisconsin ginseng for fatigue. Google Mayo Clinic for their trial.

Best wishes. Never Give In.

Mark, Atlanta

Dan59 profile image
Dan59

On and old forum I was in many of the Men with CRPC had multiple successful rechallenges with docetaxol. Here is a study from years ago before all our new meds came out. They note 66% response rate, which is pretty good, These were men in late stage disease. goldjournal.net/article/S00...

in reply to Dan59

Thanks for the link Dan, I have been looking for just that. I'm all for pumping more Docetaxol in me. That stuff carpet bombs cancer.

sdigio profile image
sdigio

Thanks, Dan. I couldnt find any research on it. Great information.

Hazard profile image
Hazard

I think it is extremely unhelpful to make a blanket statement "It will make him feel awful". Why do you want to scare people like this?

I have just completed 9 shots of docetaxal and not once have I felt awful. Not once have I felt even mild discomfort. I have never experienced nausea or fatigue. I do have peripheral neuropathy in my feet, and some of my nails are close to falling off. But in the scheme of things, these are small price to pay for the PSA reduction I got from docetaxal.

I do not want to be insensitive to those who have experienced significant side effects from chemo because I know that we all have different responses. But let's not over react before someone even starts treatment and in particular, I think it is rather premature (if not irresponsible) to prescribe CBD for someone who has not yet experienced any problems.

dress2544 profile image
dress2544 in reply to Hazard

Hi Hazard

What BBruce said was tru my case. For me the first shot itself was horrible. I was forced to stop docetaxel with only one shot because of the high toxicity which my body couldn't tolerate. I was almost floored with the first shot. My gastrointestinal tract from mouth to the anus was almost burned. I developed grade III mucositis. The swelling on both of my legs and feet was so heavy that I couldn't even walk for two weeks. For me this was the experience. Anyway most of the patients tolerate this drug without any side effects. Each individual's body reacts differently.

Hazard profile image
Hazard in reply to dress2544

Hi I am really sorry to hear about your awful experience with chemo. I know that some people do in react quite negatively and I know that I am lucky with my own response.

But you have summed it up really well in your last 2 sentences 'Most of the patients tolerate this drug without side effects. Each individual's body reacts differently'.

This is exactly the point I was trying to make perhaps unsuccessfully in my response to BBruce. A statement 'it will make him frel awful' may be true, it may be untrue, since we all react differently. It shouldnt be stated as a fact.

Godschild62 profile image
Godschild62 in reply to Hazard

I totally agree my husband felt like he had the flu for a few days for the first two sessions of docetaxel, after that he had almost no side effects.... He's on cabazitaxel now, and same effects first few sessions and now bounces back quickly after chemo. Everyone experiences it differently.

Tall_Allen profile image
Tall_Allen

It was just a very small pilot trial at Johns Hopkins, but chemo did reverse the AR-V7 positive status (Xtandi/Zytiga resistance) in 6 of them. I can't think of any reason NOT to try chemo and then rechallenge with Xtandi or Zytiga.

academic.oup.com/annonc/art...

Bipolar Androgen Therapy is also being tested for this purpose.

StephjoeSteph4197 profile image
StephjoeSteph4197 in reply to Tall_Allen

Really good link. Thank you for sharing.

EdBar profile image
EdBar in reply to Tall_Allen

Both of those were presented as possible options by Dr. Sartor should Xtandi stop working for me - I've been on it for nearly 3 years now.

Ed

Patrick-Turner profile image
Patrick-Turner in reply to Tall_Allen

Hi Tall Allen, There was trial by Dr Sam Denmeade at John Hopkins at Baltimore for BAT therapy and maybe results are available. Google it. It is not thought suitable for ppl with bone mets.

Patrick Turner.

Tall_Allen profile image
Tall_Allen in reply to Patrick-Turner

Hi Patrick-

You misunderstood the trial. It was ONLY for men with metastases, but they had to be asymptomatic or minimally symptomatic. Here's an article about it:

pcnrv.blogspot.com/2016/09/...

As it says, among the 30 minimally symptomatic men with mCRPC who had progressed while on Xtandi and tried BAT therapy, 54% responded to re-challenge with Xtandi with a subsequent drop in PSA by at least 50% and progression-free survival of 4.8 months. However there were also adverse effects, some serious. No one knows yet how to judge in advance which men will respond to BAT and which men will get worse. This is highly experimental and should only be done within a very closely monitored clinical trial.

wongle profile image
wongle

Hi sorry to interupt my hubby had a bit of the runs and tiredness that was the only side effects he had and he still had his hair after four lots effects everyone different but for all of the side effects there are plenty of things they can do to help

larry_dammit profile image
larry_dammit

Sorry to here , I did the chemo then they put me on the Xtandi,I also take a eligard and Xgeva shot monthly . So far it works for me, my doctor did say that if the Xtandi quit working we would go back to the docetaxel again . Hang in there this is just one battle of many. Win that war 😀

Jimdoud1 profile image
Jimdoud1

Be well hydrated prior to and during treatment. Use ice bags on fingers and toes to prevent neuropathy. Chew ice and drink waten during treatment to keep from losing taste. I only had one “bad” day after each treatment. Mine was the 4fh day, but for most I believe it is the third day usually.

vandy69 profile image
vandy69

Good Sunday Morning BBruce,

For me, I was resensitized to Xtandi after 6 cycles chemo with Docetaxel/Carboplatin.

I had previously taken Xtandi in 2015-16 for about 12 months and then it failed.

Last chemo was 1/9/18, PSA rose from .4 to 1.3 and then reintroduced Xtandi and PSA has been .7 for 3 months. Truly one of God's miracles! Will continue this ride to avoid next round of chemo.

Best wishes. Never Give In.

Mark, Atlanta

PLASTICMAN profile image
PLASTICMAN

Hi. Same sort of deal for me. Am 78 and was on Xtandi for 5 months as well as Eligard every 3 months starting March 2017 with PSA 0.31 at that time rising from 0.21 a few months before. PSA continued to rise to 30.29 after 2nd Eligard but in November 2017 PSA went down to 0.27 after 2nd Xtandi dose (120 caps per month). In Feb.2018, after 6th month on Xtandi, PSA up to 2,93 and in April, 7.05. Xtandi not working. So started chemo with Docetaxel on 4/17/18, and after 3 sessions, PSA down to 6.95 from the previously mention 7.05. Bummer! What did go down substantially though was the Alcaline posphate (Fosfatasa alcalina in spanish as I live in Buenos Aires) which fell from 533 UI/L on 4/3/2018 to 224 on 6/18/2018. The oncologist suggested that given my advanced metastatic prostate hormone resistant cancer it wasn't too surprising that PSA didn't go down too much but the reduction in the other was significant as it is a measure of activity in the bones. Do feel extremely tired and fatigued which oncologist did not attribute to the chemo but that it must be something else. Doesn't quite convince me! Will now do two more chemo session with Decetaxel (the best option according to oncologist) every 28 days. then would do another blood test and bone scan in order to compare with previous ones. Would appreciate any comments

PLASTICMAN profile image
PLASTICMAN

I did not have side effects when first treated with Decetaxel 6 years ago.....8 sessions. However, now after 6 years and 3 sessions, I dn't feel too good. Tired, fatigued, some constipations but otherwise OK:

Patrick-Turner profile image
Patrick-Turner

Hi Bruce and everyone, let us all calm down about docetaxel because it affects ppl differently. I know someone under 60 who had 10 shots and he had few effects, and he didn't need CBD. He was playing competition tennis all the way through the 6 months where it worked, and he didn't complain about anything. Its now stopped working and I dunno what he might try next. I heard platinum based chemo is far worse.

I may need docet soon, I am 70 and I cycled 256km last week and despite bones riddled with mets I am symptom free, and I feel great most days especially after good 3 hour ride.

Its possible some ppl will have docetaxel fail after awhile because while it kills some Pca cells there are others that have mutated away from being able to be killed by docet. so nobody can really predict outcomes, but in majority of cases, as years go by, I know who wins. Only very few get a remission from Pca.

I grew some cannabis with low THC and high CBD because ppl were claiming CBD kills Pca but after nightly use for 8months the Psa just went up with ZERO effect by CBD. I cycled all the way through that time, and it calmed me down, and had me think more emotionally, but also pleasantly. I dunno if it may help when I start docet. The stuff I grew was not like the junk the drug dealers flog to ruin ppl. What I grew caused no addiction, no paranoia and no schizophrenia. The high THC junk does those. So a little high is OK, if high CBD is there, and I coped OK living alone. I never drove or cycled while high.

Patrick Turner.

lewicki profile image
lewicki in reply to Patrick-Turner

Hello, I have read that the correct ratio of THC to CBD is 5 to 1 thc to Cbd.

This is what

my provider just discovered.

He claims it is the THC that opens up the cancer for the CBD to work.

??

Patrick-Turner profile image
Patrick-Turner in reply to lewicki

The more I read about cannabis oil curing cancer the more I disbelieve all claims of cannabis oil curing any cancer. Providers of cannabis oil will often speak bullshit to get you to buy what they grow. They know nothing at all about biology or cancer or the scientific method. Much cannabis being sold is Indica variety grown in hydroponic grow houses and new generations of cannabis are selected for high yield of THC, so that only a small amount of oil is needed when diluted 1: 1,000 with canola oil and then they charge a huge amount of $$$$ and they are just greedy and just make false claims. Cannabis use is high in Jamaica but Pca rates are also high so I doubt cannabis high in THC cures anything at all, and is most likely to cause mental illness with prolonged use. So when you take a lot of THC, you hope to get Pca cure but then you get no cure, and then you die depressed. I have never ever read any story of any man getting Pca cure from cannabis and with the story verified by any independent medical authority with true history of Psa and scans.

Meanwhile, it appears that Lu177 is giving me a benefit and last PsMa scan shows all soft tissue mets cannot now be seen, and there are no new bone mets and bone mets are slightly less, and I am feeling well. Psa was 25 before Lu177 and is now 17. I am going to continue to take it, and I think the expense of usd $28,000 for 4 Lu177 infusions offers far better value than buying $28,000 worth of cannabis from greedy fraudulent drug dealers.

It is very possible Lu177 will not give me a cure and the Pca is likely to still kill me when it mutates and nothing known to man can kill it. But all anyone can do is buy things that work for a long time. Buying treatments is buying time, and getting a cure with Pca is very, very rare.

Patrick Turner.

vandy69 profile image
vandy69

Hi Bruce,

Had them together. Typical chemo session was Aloxi, Docetaxel, Carboplatin, and left with On Body Injector of Neulasta. Had Carboplatin because of mets found in liver.

Mark

PLASTICMAN profile image
PLASTICMAN

Here's what I posted 10 days ago: I did not have side effects when first treated with Docetaxel 6 years ago.....8 sessions. However, now, after 6 years and 3 sessions (one every 21 days), I don't feel too good. Tired, fatigued, some constipation but otherwise OK. However ....adding here....after the 3 sessions my PSA hardly went down....7.05 to 6.95. Was taking Xtandi for 4 months before I was taken off it (stopped working, PSA went from 2-something to 7.05 rapidly) and started docetaxel. Have done one more session of Docetaxel and will do one more near end of July. Then bone scan and blood test to see what goes.

May the force be with you!

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