Early progress - Good news: Made the... - Advanced Prostate...

Advanced Prostate Cancer

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Early progress - Good news

Kentucky1 profile image
34 Replies

Made the decision to go with abiraterone/prednisone along with Lupron to start this battle. I met with my MO on Thursday for my first real follow-up since starting the abiraterone 7 weeks ago. I know it's early and I don't want to get too excited but it looks like things are trending in the right direction. My PSA was down from 368 to 25. My ALP was down from 574 to 218. So far tolerating the meds with minimal side effects. I do have elevated levels of ALT and AST, but even those are trending back towards normal levels. Overall I'm happy with the initial progress and hope to see it continue. The only downside with my reports were that the DEXAscan scores were off. T score of 1 and Z score of 0.3. the MO has suggested starting Xgeva but only at 60mg dose every 6 months. Unsure why this dose vs. the normal monthly dosing regimen, other than he knows my reluctance to add high risk medications to the treatment regimen. Just wanted to share my good news and encourage everyone to keep fighting.

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Kentucky1 profile image
Kentucky1
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LearnAll profile image
LearnAll

This morning I took my first dose of Zytiga….add on to Casodex and Lupron. This is 9th day on Lupron. My PSA has declined 90% from initial …(from 830 to 99) before Abiraterone addition. Fellow members here and my own research prompted that Zytiga should be added.

Baseline bone density came out minus 1 which I was told is Normal. The challenge for us going forward will be how we can preserve our bone mineral density and muscle mass..

Plan is: (1) Walking at least 4 miles a day (2) Lifting light weights (thru machines ) at Gym daily. (3) Eat yogurt daily and take Vit D 1000 mg each day (4) Lots of Veggies in food.

Hopefully. we can avoid bone building medicines by above efforts.

in reply to LearnAll

It’s a good plan.. 😂

dougnola profile image
dougnola in reply to LearnAll

@Kentucky1, I agree with LearnAll on his daily bone regime. With minor differences in weight bearing and walking regime and diet (my vit D is w calcium but same diet), my bone scan show encouraging bone loss decrease. I had osteopenia in 2/18 after a year of chemo, radiation, and ADT (now lupron w zytiga/prednisone). One year later w daily tending (2/2019), bone loss is minuscule compared to previous year with this regime so NO bone strengthening meds necessary (and my body has frankly never looked more fit since I was in my 30’s). Hopefully, I can give another stellar 3 year update in 2/20??? I’m trying anyway! :)

Magnus1964 profile image
Magnus1964

It is good news, you are responding well to the treatment. Relax and enjoy.

Tall_Allen profile image
Tall_Allen

Consider adding Celebrex along with Xgeva. Send your MO this link and discuss at your next meeting:

ascopubs.org/doi/full/10.12...

CantChoose profile image
CantChoose in reply to Tall_Allen

Confused by this one:

"These data show no overall evidence of improved survival with Cel. Preplanned subgroup analyses provide hypotheses for future studies."

ncbi.nlm.nih.gov/pmc/articl...

Isn't the conclusion that it reduces PSA but doesn't impact outcomes?

tom67inMA profile image
tom67inMA in reply to CantChoose

I'm confused too. The seems to be a meaningful advantage for ZA with celecoxib in the metastatic setting, but maybe it didn't meet statistical significance?

Anyhow, I'm on celebrex and if nothing else it's all but wiped out my pain. Great stuff!

Tall_Allen profile image
Tall_Allen in reply to tom67inMA

It was statistically significant for men with metastases.

Tall_Allen profile image
Tall_Allen in reply to CantChoose

No - the subgroup that only included men with metastases saw a 22% increase in survival.

NPfisherman profile image
NPfisherman in reply to Tall_Allen

I reviewed your reference and that is Celebrex in conjunction with Zometa (Zoledronic Acid) and not Xgeva which is Denosumab. While the drugs have the same goal of increasing bone mass/density, they are not the same. Did you have a different reference that you meant to reply with to the post? I have not seen a study with Celebrex and Xgeva. Thanks.

Fish

Tall_Allen profile image
Tall_Allen in reply to NPfisherman

I see no reason why it would not work with with Xgeva. Celebrex is a low toxicity drug, so I think it's worth a try.

NPfisherman profile image
NPfisherman in reply to Tall_Allen

The issue with Celebrex is kidney function, but overall, one might deduce that because the drugs (Xgeva and Zometa) are for a similar function, then it could work. Surprised that there has been no study yet based on the success Zometa had with Celebrex.. Thanks for the reply.

Fish

Tall_Allen profile image
Tall_Allen in reply to NPfisherman

Celebrex has a lower side effect profile vs other NSAIDs, which is why it is prescribed for long-term use. STAMPEDE which was probably started before Xgeva became available only looked at Zometa.

NPfisherman profile image
NPfisherman in reply to Tall_Allen

None of the NSAIDS are innocuous and selective COX-2 inhibitors have their own risk. For COX-2 selective med--Celebrex--the last one standing--others withdrawn---Risk of MI--left with a black box warning regarding Cardiovascular risk and not without renal risk as well.

clinicalcorrelations.org/20...

uspharmacist.com/article/ns...

Better on the GI end I guess....

Fish

Tall_Allen profile image
Tall_Allen in reply to NPfisherman

I agree. The makers argue that the same side effects are even worse with other NSAIDs. As someone with arthritis, I much prefer Celebrex.

NPfisherman profile image
NPfisherman in reply to Tall_Allen

It makes me wonder why they call these years...."The Golden Years"....maybe because we have more gold than when we were young....it sure isn't how wonderful our bodies feel at this advanced age... keep moving....that is especially helpful in osteoarthritis... Take care

Fish

Tall_Allen profile image
Tall_Allen in reply to NPfisherman

It's entropy - things fall apart. Years of repetitive use at the gym, and running finally wore down my knee joint. I use very low weights for leg work now and don't run or climb mountains anymore. My upper body looks great - below the waist, not so much :-(

LearnAll profile image
LearnAll in reply to Tall_Allen

muscle stretching and yoga postures can keep muscle and bones OK without much wear and tear. These can be done ion your bed to minimize weight bearing.

in reply to Tall_Allen

You mean that’s not really you in the picture?

Heading in the right direction. Congrats , and keep it going ...😎

tango65 profile image
tango65

A T score of -1 is the lowest limit of normal bone density.

americanbonehealth.org/bone...

Tall_Allen profile image
Tall_Allen

I gave the link above. "Cel 400 mg was administered twice a day for 1 year"

Bebby1 profile image
Bebby1

Great news

Thanks for sharing

Litlerny profile image
Litlerny

Good for you Kentucky! You’re off to a flying start. I’m sure you and your M.O. will tweak your treatments as you see fit along the way. Best wishes for a longggg time of keeping the monster at bay and feeling good along the way. Hey...that rhymes! 😎

larry_dammit profile image
larry_dammit

Good news. Keep fighting the monster 🙏🙏🙏

Survivor1965 profile image
Survivor1965

Awesome!

I'm on the same plan. Great results other than fatigue and loss of muscle. Try to counteract with exercise.

Kaliber profile image
Kaliber

I’m on monthly Zometa and , for me, it’s an” extremely “ unpleasant experience each month which debilitatates me for 4 - 7 days. The day before and the morning of the 15 minute infusion, load up on those OTC decongestants and bring along some drink that makes you pee constantly. Those grape flavored sports drinks run thru me like a sieve . You’ll want to guzzle down a couple bottles right after the infusion and for a day or two after. If you wake at night with bone shaking chills, panicking and unable to breathe, jump into a jacuzzi, hot bathtub or maybe a hot shower. Huffing some of those cans of sports oxygen helps get your breath back and a little Xanax helps with the suffocating panic you might experience. Keep your opiate pain meds handy if the skeletal discomfort gets to be ( easily ) too much. Imagine the worse case of flu you have ever experienced and 10X that. Some infusions are much worse than others and it doesn’t get easier with more infusions. The bone joint pain can be very intense. Not trying to discourage you because bone reinforcement is extremely important , especially if you have a large skeletal met load like I have. I want my treatment, no matter how punishing it is.

After a few off and on days it might seem to be getting worse, sometimes unbearable, then very suddenly you feel it let off ( minutes to an hour or two ) then suddenly it’s mostly gone. You might think hell is breaking loose, but hang in there it’s worth it. Your mileage may vary, just say’in.

The “ mental “ aspect of this treatment sneaks upon you and before you realize it, your normal daily life mental balance can be strongly screwed up. You don’t see it coming and bam it’s there. Still. Just when you think you’re screwed ( a few days after infusion ) suddenly you’ll literally feel it let go and you’ll be joyously happy to see it go and be returning back to normal ( with a sigh of relief). Hope you have an easier time of it than I do , for sure.

j-o-h-n profile image
j-o-h-n in reply to Kaliber

Shoot.... Your post sounds like a 1950's black and white thriller.... If only I knew beforehand I would have had some popcorn ready....Free for me, costs my wife however. Thank you.

Good Luck, Good Health and Good Humor.

J-o-h-n Sunday 06/30/2019 5:03 PM DST

Kaliber profile image
Kaliber in reply to j-o-h-n

Yayahahaha I wish someone had told me this before I started Zometa... it would have helped me a lot. The treatment is very important but rough to endure. Mine scheduled for the third of July is suspended for safety reasons related to impending plastic MOHS surgery on my forehead to remove the dime sized basal cell carcinoma that suddenly popped up there ( two cancers now ) My onc doc is kinda upset to see me miss my Zometa infusions and wants me to get back to them immediately... soon as possible. Zometa is awful but I need it.. whatever.

j-o-h-n profile image
j-o-h-n in reply to Kaliber

I had two basals myself and one cancerous one. Let's hope and pray you heal quickly so you can get to your Zometa. What a life we live.... from one issue to another. But I guess it's payback for all the naughty issues we had with women... But at least those were fun.... Aim a little low, check for Kentucky windage, squeeze the trigger and bullseye, you're on target.

Good Luck, Good Health and Good Humor.

J-o-h-n Monday 07/01/2019 12:38 AM DST

gamemaster34 profile image
gamemaster34

Good news !!!!

j-o-h-n profile image
j-o-h-n

It's like winning the derby...Drinks on the house....Congrats!

Good Luck, Good Health and Good Humor.

J-o-h-n Sunday 06/30/2019 5:05 PM DST

jfoesq profile image
jfoesq

Always nice hearing good news.

Keep on trucking!

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