CSN Login
Members Online: 13

Zytiga and great result

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

I just got back from MD Anderson, ran CT, Bone scan, blood test. Tumor's hard to find, bones are clear and psa holding at 0.3. While in waiting room with other Vet's and found they had just started Zytiga and having the same result.

Found why my blood count was going down, because of diabetes medicine. Small test my doctor said to try. Friday went to VA hospital for blood test and blood count was 89,000. Stop diabetes med's for two days and went MD Anderson for blood test and blood count 125,000. Will go back to primary Doc's and maybe change med's.

VascodaGama's picture
VascodaGama
Posts: 1594
Joined: Nov 2010

Ralph

Congratulations for the Zero (yours of course). Being stable is excellent.
The blood count is another aspect to celebrate for the improvement.
Many guys here including me are following your reports with high expectancies on the results of Zytiga. You are helping us more than what you think, with your references.
What is the drug’s name/mg you have stop taking?

I raise a glass of Esporao Reserve red to commemorate these great results.

Best
VG

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

This is the drug that is in question(glyburide). Zytiga is no silver bullet, but I will ride it as long as I can.

Celticroots2
Posts: 43
Joined: Mar 2012

I'm glad you are having good results Ralph. Hubby's PSA is still rising albeit slowly. He has an appt on Tuesday when we will find out how much it has risen since his last treatment 6 weeks ago. Doc has been holding off as long as she can on chemo. She has also talked about Zytiga for him, so maybe she will go that route. He has been really tired lately too. Not sure if this is due to the rising PSA or just from sheer boredom, since he hasn't worked for weeks. I just want it all gone from his bones and his body, just like I wish it for everyone. It's just a nasty disease, plain and simple.

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Back before I went on Zytiga, I ask the doctor about chemo and at the level of my metastasis of cancer that chemo does not work. He said that there is a new drug that is out there, which was Zytiga. At that time the studies would require you to go thru chemo first. They had just started testing without chemo, So here I'm 6 months down the road and the shinking of my tumor's and very low psa. I was down at MD Anderson an met a veteran like me, but his psa at 600 and it drop 20 psa and it was in his bone's, that also went down. He had been on chemo which he said was terrible and they were giving him raidation to stop it in the bones. The Zytiga has seem to stop or slow down the progress! :-)

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,
Glad to hear that Zytiga is workingmso well for you. I am back on HT. Doc said it was my best shot. We will see. I figure if it fails I can try your drug. Seems like it works fairly well, judging from your results.
How are you doing with diet and exercise? I am having trouble with exercise due to work. When I get done I am worn out. I hope to have my business behind me by end of July. Then I can get more involved.with cooking and a real exercise program. Been reading Dr. Myers new book and I hope to follow it.
My body stopped producing B-12, and my doctor just ran a test and now I have something called Helicobacter pylori infection. Both these happened after my hormonal treatments. Now I have to be treated for this. Have a hunch HT is doing more harm but nodules disappeared on lungs, and PSA went to 0.000. So decision time. Zytiga's side effects can only be so bad.

Luck to you.

Mike

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Well dieting has not been one of the better thing I do, but I have drop about 9 pounds since 10/2011. It's not much, but my doctor was happy and so i only weight 230 now! :-) I was at 200 pounds 4 years ago, If i can get back to 200 pounds again, I'm going to shave my head so people will think I have cancer.

Now for the hard problem -- Exercise. I started walking in May about 3-4 times a week a mile to 1 1/2 mile. As I walk the problem's with neuropathy in my legs and lower back started giving me problem's. Now I have switch to stationary bike, and neuropathy has back off. I agree about HT, I think it's side effect are causing a lot of my problems.

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,

I think if you can walk any length you need to do it. If you need to take pain pills to do it, I would suggest you use them. I use my percocet to give me energy, and block the pain, so I can walk. We need to do whatever itntakes to keep our bodies strong. Kind of like training before going toViet Nam. Not sure if you had special training, but wehad six months of hard core training. Never quit, never give up.

I use percocet to help me walk. I am sure that is not on the recommended uses, but works for me. Do not give up the use of anything if you can help it.when you loose something it is hard to get it back. Fight every step of the way. Wish you well

Mike

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,
President Obama came by our VFW post 3219 Friday. I had a knife on me, pen knife. My dnaughter gave me, and did not want to give it up so I was in the second tier, about 15 feet away. The guys in the VFW said he was cool. One of the guys in there has anSilver Star with V for valor. President gave him one of those presidential coins? Another guy in there hadhis camera break so the presidential photographer said he would mail him a set of pictures.

It was pretty nice. The mayor of Hampton does not even come over here to Phoebus. We are kind of like outcasts in this little community. The local high school just won the state championship for second year in a row for football.

Not bad for a small village.

Mile

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

I was with the 1st aviation Bge., 179th Shimpboats chinook unit and a Crew chief station at Camp Eagle. So flew around picking up you hard core train type of guy's. I live in a world lost from that war for a long time.

Fighting back now for my rights and health!

hopeful and opt...
Posts: 1363
Joined: Apr 2009

it's all good

I developed a spine problem a couple of years ago, so I customized my exercise to comply with my physical therapist recommendation so I don't hurt myself...so I personally alternate between walking(but not on a tredmill, because of the bounce that affects my spine) on earth or rubber, but not on hard ground; I swim, and ride an indoor bike......I stretch everyday, for my core and spine, doing what I was taught. As far a resistance exercise, I limit to ones that do not affect the lower back, i am being conservative....I do a couple of times a week with light weights.

The things I do are somewhat different from what I had previously done, but this works well for me since i lost about 20 pounds in the last couple of years.

When getting physical therapy, the therapist emphasized that if anything hurt me during exercise to stop; this was expecially true during my therapy sessions.....now, when I walk, I get referred pain if I walk too much, so I stop......when I first started walking I was able to do only five or ten minutes, now I generally walk a little more than 2 miles 6 days a week, and on some days when I am in conversation with a walking partner, I walk three miles. (By the way, I bought very good pairs of walking shoes, that absorbs some of the shock of the pounding on the trail).

Lately, I've been emphasizing swimming since I feel that there is less of a negative effect on my spine when compared to walking.

I mention all this because I have customized exercise to what i can do, to enjoy the experience and not induce any pain from the exercise........when I go to the gym there are lots of strong people, in great shape....they each have different exercises that they emphasize...it's all good....as long as you are consistant.

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

I'm trying to model my life after yours. The privite doctor said, that a pool to walk in, like a health club pool. So I decide to join a health club. I think that will solve my feet and leg problems. Plus this heat in Texas is tuff. Wait to the fall to try and walk outside again!

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,
A friend of mine started water aerobics about eight months ago. He has lost 40 pounds, cramps stopped in his legs, and is alot more agile than he has been in years. He lives down in Chihuahua, Mexico so he prefers the pool at night. If you join a health club they should have someone to advise you on what you should pursue. When they put the stent in my heart they put me in physical theraphy. It was pretty nice. They monitored your hear, bp, etc. I liked it, but had a biopsy for lung and that ended.

hopeful and opt...
Posts: 1363
Joined: Apr 2009

"don't model your life after mine", just ask my ex wife

By the way, I've done a lot of research about gyms, and I found that the best one is the one closest to where you live ...because that's the one that you will show up at.

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Well maybe you model your life after mine.I have two Ex's, but the third time is the charm. After I got control of my evil twin, I thanks to the good Lord was watching over me, because my kids turn out great.

Thanks for the advice on the health club

jogger
Posts: 47
Joined: Nov 2009

Hi,

I have a bad low back so to get moving this is what I do, and you could try it. Lie on your back, on a mat or a rug. You'll need a comfortable pillow. Tie weights to your ankles. (little bags of sand with velcro to attach them to your ankles which you get in the sporting goods store.) I started out with 3-pounders. Also hold weights (dumbbells) in your hands. I started out with three pounds, moved quickly to five pounds. All at the same time move your arms and hands back and forth like you're on a bicycle, while pumping your arms up and down. Every few minutes I will use use 15 pounders for a few beats.(I like to maintain the tempo of march music, you know, Sousa). Keep this up for half an hour, and you'll get modified aerobic exercise and modified resistance exercise. I do this twice a day. Good luck!

Jack

Celticroots2
Posts: 43
Joined: Mar 2012

Well it was one of those long days at the VA. His PSA is still rising so she has told him to stop taking his oral hormone meds. She says that sometimes, though it is weird, that the PSA comes back down when you stop the meds. She wants a new bone scan and ct scan and then in about 3 weeks more labs to check if the PSA is still rising, if it has stopped or is going back down. She did talk about Zytiga and also Provenge, but he would have to go to the VA in Oklahoma for it. Then after the blood has been treated in California it has to be re-administered back into the bloodstream within 2 hrs or the whole process has to start all over again.

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

I would see if Zytiga works, before going on the provenge. With Zytiga there is no taking blood out, but provenge has a proven record. I beleive that Zytiga is the right choice, with my psa at 0.2 for 6 or almost 7 months. I have to go to VA once a month for psa test to get the drug and they send it to me evey month with the prednisone.

Celticroots2
Posts: 43
Joined: Mar 2012

A decision will be made after he has had the scans just to make sure that nothing else is going on. It could be the drug has just run it's course and needs to be changed. I just worry about his bones so much. It is so widespread and I pray that those tumors aren't spreading or getting worse. It's just one day at a time.

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

I saw down at Houston, MD Anderson There were 3 over Vet's with me that were a LOT worst than I. They have started Zytiga and their world has turn around for now. I think they beleive moreb than me!!

MLKisner
Posts: 14
Joined: Oct 2012

Ny husband has been on zytiga for 9 weeks and his psa jumped significantly from14-41, however he says he feels great.  Praying for a turn around soon that it will start working effectvely.  We have a 3 year old and we both want to raise him together. Any advice you can provide would be great.

Marsha

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Well I started on February 2, 2012 and in less than 6 weeks I drop from 2.6 to 0.2 psa and stay there until July 2012 and it started  climbing 0.1 to 0.2 per month. In November of 2012 it was 0.9 and in December drop back to 0.5.????? The tumor's increase and decrease in size with the psa.

Make sure he is taking it everyday at the same time and waiting the amount of time to eating before and after Smile

Merry Christmas and God Bless

 

 

Celticroots2
Posts: 43
Joined: Mar 2012

Happy to see that you are doing well on the Zytiga Ralph.  Unfortunately for my husband it is not the case.  In fact they told him to stop taking it.  He was having problems with horrendous hot flashes and night sweats.  They were occurring every 30 minutes or more.  This was dropping his potassium levels dangerously low to the point they had to give him a 2hr IV.  His blood pressure was also very erratic.  So he had an unscheduled CT Scan today and he will see the doc next Tuesday.  Not sure where we will go from here. 

MLKisner
Posts: 14
Joined: Oct 2012

I am glad to hear it is working for you.  I just don't know what to do for him.

He keeps getting bad news everytime we go to cleveland, We pray and hope for the best.

People keep telling me about snuffy myers but the Dr. in Cleveland tells us he is a quack so I don't know what to do.

I hope the zytiga kicks in.. He is healthy, working everyday,says he feels better than he ever has, but his PSA jumped significantly.

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Since he is a hard working man. Sometimes as for I would move my pill taking time around my working schedule. Also forgetting when I was eating. I have a Iphone with a timer to tell me to take my pills and when to eat.

 

What was his Gleasons scores and when did he remove prostate? Where is the prostate cancer tumor's right? There is different type of prostate cancer and some will have higher psa and my case I have a very low psa.

VascodaGama's picture
VascodaGama
Posts: 1594
Joined: Nov 2010

MLKisner

I read your posts in another thread. I am sorry for the status of your husband.

You have not shared details of his diagnosis apart of him being a Stage IV patient. According to your descriptions, the first treatment provided was a hormonal protocol (HT) that failed 8 month latter. Then he was put on Zytiga but such seems not to be working too because of the increased PSA.

I wonder what drugs he took while on HT and the extent of the bone mets.

Typically doctors do not recommend radicals (surgery or radiation) with intent at cure but I think that a “mixture” of treatments may provide better clues for his diagnosis. He could try to get a combination of chemo plus hormonal based on the latest drugs classified as targeted medicines.

He also could get involved in a clinical trial that would address specifically an area to cure than just continue on palliative ways of controlling the advancement of the cancer.

Alpharadin has proved to contain bone metastases. Zytiga is a hormonal type of medication that addresses the intratumoral activity of the cancer. However, the testosterone “factories” should all be closed down with other drugs.

I really dislike Yell the way his doctor suggested that your husband is going to die of the cancer. I also dislike reading about their comment regarding Dr. Myers. This doctor is highly regarded in the community of prostate cancer as one of the best if not the best oncologist in the “trade”.

He may be the one to consult for such aggressive cancer and he may give you the peace you are looking for.

In failed hormonal therapies doctors tend to change drugs or increase their potency or even increase the protocol before giving up. Only after such “trial” their patients are moved to the second line hormonal drugs. Moreover, some oncologists use other methods to arrest the cancer into submission. Drugs that prohibit the manufacturing of newer blood vessels (such as Thalidomide taken with vitamin B6) that are demanded by the cancer to survive and multiply and 5-ARI (5 alpha reductase inhibitors) that prohibit the formation of dihydrotestosterone ( a tenfold more refined testosterone) that feeds the cancer, are examples of ways used by specialists in treating advanced cases of PCa.

I recommend you of getting second opinions on your husband’s status and on other ways for treating his case. Being 51 years old and having such a young child is enough reason to fight with the whole arsenal.

I hope you find peace and that your husband gets better.

VGama Wink

caseyh
Posts: 63
Joined: May 2002

Ralph

Great to hear that you are doingi so well!  It couldn't happen to a nicer guy.

Best wishes for a new year filled with continued progress and good health,

caseyh

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

As in the USA and some other countries, the European Union has now approved abiraterone acetate (Zytiga®), in combination with prednisone or prednisolone, for the treatment of men with chemotherapy-naive, metastatic, castration-resistant prostate cancer (mCRPC).

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network