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News from MDACC

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Well went to MDACC on Monday to comfirm what I suspected. My psa is on the rise and the doctor's at MDACC do not have a plan B to keep the Monster at this stage. I will continue the Zytiga for the next 4 months as the cancer finds it's home. Which will be the bones or any one of the major organ's or both. This is per the MDACC doctor's and this sucks. There is other drug's like MDV3100, but do not qualify for it's or Provenge.

The direction they want to go in is to fight the cancer at the next level. I also ask the question of time. They said the drug that I will go on will be rough and that about 2 years.

On a good note Zytiga did give me 12 month and the cancer being a sleep and tumor's smaller.

God Bless

Life is beautiful!

Swingshiftworker
Posts: 620
Joined: Mar 2010

When I hear news like this, I'm really at a loss and I usually say nothing.

All I can say is that I wish you well and hope that you're able to eventually control and quell the cancer.

It sounds like it will be a tough fight but you seem to have a positive outlook on life and the will to do what it takes to avoid losing it.

Best wishes and good luck!

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

I admire your courage and persistence. I truly hope you win this one!!

Best of luck!!

David

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,
Have they said anything about trials? You need to check on this. I have been given some dire predictions. Now they say Iam in good shape. Everyday is great. We sometimes forget about this, but something comes along to get your attention. If I can help just let me know.

Mike

mrspjd
Posts: 688
Joined: Apr 2010

Ralph,

Sad news but delivered with the grace and dignity of a humble man who has a zest for living and a love of life.  There is something we all can learn from your positive perspective & strong spirit.   I have every hope that new, improved and effective PCa drugs & txs, now in the medical pipeline or in clinical trials, will benefit you if/when you so choose, and extend your journey as you travel this uncertain road. 

Your kind thoughtful posts are a welcome addition to this forum.  Sincere wishes for all the very best to you and yours.

mrs pjd

VascodaGama's picture
VascodaGama
Posts: 1519
Joined: Nov 2010

Ralph

Your post is short and depressing. Sincerely I cannot understand your doctor’s comment.
I am sorry for the news on the progress but is it the end of the line in HT? I do not think so.
Similar drugs to Zytiga such as Ketoconazole (in action for 20 years) got very good results in PCa advanced treatment. This acts similarly to Zytiga, it is affordable and a substitute to control intratumoral cancer activity.
Instead of discussing the next “level” it might be worth to discuss about the next “step”.

The team at MD has been good in the control with Zytiga but they follow the trial’s protocol. They may want to introduce you a continuing trial (probably already established) for the ones who have failed Zytiga.
I would discuss with them on alternatives away from the “Zytiga environment”. Probably speaking with someone (doctor) that is not involved in the trial.

I would recommend you to get this book that explains in clear words about possible drugs in your next step as well as the ones for your next level. Very informative about options and the side effects of the drugs;
“Promoting Wellness Beyond Hormone Therapy: Options for Prostate Cancer Patients”, by Mark Moyad.

I would go further and suggest you to get a consultation away from MD to have a wider picture of your case. It does not mean that you move away from the team at MD but to give you a different perspective of the future.

Life continues to be beautiful.

Cheer up buddy.

Best.
VG

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

I 'm little concern that you think that it is a magic thing for this cancer. I think you hope for a greater special shot that cure's it all.... The drug for this cancer is not there!!! It will be soon, but later than we hope..

I have went to UT southwestern Cancer center in Dallas, beside going to MDACC, plus VA Hospital which is a joke for care of this cancer. I have look at the second choice's and MDACC bought two of there best cancer doctor's in and said i was ugly too. I don't think a diet or watching what I eat will make the different with this cancer per MDACC.

OR trying to do a drug that they do not approve for this cancer !!! I think that MDACC is on target with this Cancer.

They think there is a hope of a new test going on.

Thank you for all you do, VG you are a life line and always be there!!!

God bless

God bless USA

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

We can all agree that prostate cancer sucks big time. What I found with this monster is that you have to follow what you feel is the best treatment path.

It looks like your doctors at MDACC are on target.

Prostate cancer for the most part is not a one size fits all.

Different drugs and treatment methods have success and failures.

I welcome the day that a medication arrives that cures Prostate cancer, in my case that would be to late, but for future generations very welcomed.

I now use all of my life skills in this fight.

Keep the faith and hang in there, We are all brothers in this fight

Kurt

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Kurt, I'm ready to rumble and thank for your support. I think MDACC is got a next drug for me to test. I HOPE!

I believe!!!

God Bless

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,
I am so sorry for what youare going through. One question, did you mean they are saying you are too ugly to save or your cancer is? Confusing. Anyhow bro it is as good as it gets. Please check trials.
Take care bro.

Mike

caseyh
Posts: 63
Joined: May 2002

Ralph

I am in my 13th year of survival, but still battling disease. Over the years I have been treated at an Ivy League university hospital and at a world famous cancer center. My doctors were both highly regarded professionally and highly regarded in the prostate cancer community. Despite the excellence of these institutions and the doctors, I eventually found it necessary to seek out doctors, who in my opinion, offered better treatment options for my disease. I think that it is safe to say that the reputation of an institution does not always guarantee the best available care for all of its patients.

I believe that all of us with with intermediate to high risk disease will spend the rest of our lives managing the disease. I also believe that treating the disease is both a science and an art. Large institutions tend not to be very flexible with their treatment protocols. There are five or six university hospitals in NYC, and they all approach the treatment of Pca pretty much from the same perspective. Some top-notch Pca oncologists outside of these institutions have a broader philosophical approach to treating Pca.

I agree with VG's suggestion that you seek the opinion of another Pca oncologist. A fresh perspective from a doctor who thinks “out of the box” would be extremely valuable. This is not to suggest that you are not receiving excellent care at MDACC, but rather to suggest that there are some doctors who might offer a different perspective on how to best approach your disease.

VG mentioned in another post that Dr. Charles Myers is his hero. Mine too. He is especially good with advanced PCa cases and worthy of your consideration for a consultation. We constantly tell people to get second opinions at the time of diagnosis. I think that it is even more important at times like this. I hope that you will give the idea some consideration.

I am a Vietnam era veteran who never left the U.S. I was a Fire Control Operator on a Nike Hercules site for 3 ½ years. I thank you for your service and wish you all the best. I have read many of your posts, and I have come to greatly admire you over time.

Best Regards,
Caseyh

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Hi, thank you your kindness and interest.

Question, what were your Gleason numbers?

What treatments- drugs have you received?

Where are you now?

God bless you!!!

Thank you for your service!!!

caseyh
Posts: 63
Joined: May 2002

Surgery(Open) - July 2000
Gleason - 3+4 - raised to 4+3 after surgery
Salvage Radiation (39 Txs) - July 2003
Hormonal Therapy (12 months) - Begin Feb. 2004
Zometa Infusions (Quarterly) - July 2004 - June 2006
Revlimid (28 day cycles - multiple txs)- June 2006 - Sept. 2009
Leukine Injections – (daily x 30 with 5 months off)- Dec. 2005 - Sept. 2009
Lymph Node Radiation (38 Txs) Sept. 2011 - Nov. 2011

Current PSA has remained steady around 2.0 for last 11 months. Repeated scans show no
disease. Current treatment plan is to control the disease using supplements. We are in a "tweaking" process and will return to hormonal therapy and/or other drugs when and if necessary.

Swingshiftworker
Posts: 620
Joined: Mar 2010

Casey:

That's quite a saga and makes me feel quite fortunate for the comparatively insignificant post treatment discomfort that I'm currently experiencing.

It also reminds me to shut up when the issues involve things I have no personal knowledge or experience about and to give due regard to the men here (like you) who do.

Good luck & best wishes!

caseyh
Posts: 63
Joined: May 2002

Thanks Swing. I've been following your journey as well. If there is one thing that I have learned over the years, it is that try as hard as I might, I cannot anticipate what tomorrow will bring. I've been wrong countless times, and I've spent a lot of time worrying about PCa events that turned out not to be overwhelming. Stay positive! Enjoy life! You have a long road ahead. Good luck on your journey.

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

I'm so sorry for your fight and you hang in there. Wow to have radiation. After I had proton radiation, they burn the heck out me, and to this day I have bowel disfunction. What area's are your tumor's in? Having a aggressive type of cancer that gets to your Lymph node. It is in all Lymph nodes throughout the whole body. To try and radiated one area or remove that set of Lypmh nodes is a losing battle, and all the damage done in that area.

A blood born Prostate cancer that is aggressive, which can have very low psa, can be as deadly as a psa that is way high. The doctors at MDACC said that I will probaly always be on the low side as it will grow some place and we will able to see it.

I have been to a specialist oncologist in dallas that deals with alternative choice and he look at all the records from VA hospital and MDACC. In his words, That I should stay the course that i"m on, and also I'm Ugly too!

VG is very right in how we should always keep fighting and looking for different choice's. I'm Realistic in my approach to my monster or as normal people call it Prostate cancer. I told my MDACC doctor's to always tell me like it is.

As i will always tell y'all.

Good luck

God bless

caseyh
Posts: 63
Joined: May 2002

Ralph:

Good Luck on your journey!!

To answer your question, I've had two Feraheme MRIs so we know there is no longer cancer in the lymph nodes. This is now a case of micrometastases. Who knows where?

God Bless

Caseyh

mrspjd
Posts: 688
Joined: Apr 2010

Glad that your current PSA has "remained steady around 2.0 for last 11 months, that repeated scans show no disease," and that it seems you've had no ADT since 2009. That's awesome news! I was wondering what specific type of scans/imaging you had that have indicated no disease as well as what event(s) might trigger/initiate a "return to hormonal therapy and/or other drugs when and if necessary" as you stated? Perhaps you'd be open to sharing which drugs and/or protocol currently available, or in clinical trial, might be a consideration, that is, "if it became necessary." This info certainly could be helpful to many readers on this forum, especially with your experience as a long time PCa survivor.

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

This is a great word. I remember the picture of me first in Vietnam. Such a young and happy person. I saw a picture a year later and there was changes in the look in my face.

Now 40 years later my hands shake, left leg limps, I'm sick in side, I forget where i'm going, and plus the pain is thoughout my body. Forget the monstor in side or what normal people would say Prostate cancer.

Thank you Mike!

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

On my way to Viet nam, weight was 175 lbs, on my return home weight was 128 lbs with jaundice. Viet nam hit us all it was ugly. Keep up the fight

Kurt

Samsungtech1
Posts: 350
Joined: Jan 2011

I came back with sores, and leech bites on body, and face, weighed 128 as well was 6' 2". Had dysentry for a couple months. One pill stopped it and one pill made it open up. It took over a year to get my weight back, but my body never seemed to give up the runs for about 18 months after I got back. Had a private doctor and he had no idea what was going on. Met a chinese lady, when I lived in Chinatown in S.F. She cured me. Not sure what she did but I finally started putting on weight, and no more runs. Life is a puzzle, no way to explain what happened to me, but sometimes you meet the right person and it all works. I lived in an apt. In Chinatown and was doing laundry when a chinese funeral went by. They were something to watch and while watching this lady from laundry started talking ro me and it led to my going to her business, would not pass any business tests, but she worked on me for two months and stopped this.

Go figure.

Mike

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Jungle rot, PTSD, and all of the other problems that everybody had no understanding of. The jungle rot was the worse. From my mid section down to my knees real bad rash and skin break out. What more can I say. I forgot, also diet of not being able to handle normal food. It was ugly again. My family was not able to undestand why I was yellow in color, how do you explain sun tan with yellow from the jaundice.

Now it is Prostate cancer, since that time I gained weight to a normal level. During that time I remember being unable to eat due to the heat and humidity.

I ran on about 1 meal a day, could not do any more due to the heat, enviorment.

Yes it was ugly, my whole body was wasted. I hated the odors, smells, and everything else.

I at this point in time enjoy the aisian diet and foods, they do have a healing effect.

What more can I say, Mike and Ralph you triggered memories that I donot regret Thank You. This is great.

Kurt

Samsungtech1
Posts: 350
Joined: Jan 2011

I remember when I first got there and when our mama san did our wash for the first time. The clothes smelled funny. Kind of ripe. Of course after a few months it did not smell anymore. When I got back to the states I was wearing kakhis. Everyone I was around kept sniffing like something was smelling bad. Took a friend of mine to tell me it was me. When they washed our clothes in any river they smelled but we did not know it. When I got back these people were smelling the mekong river. I did not know. It smelled, but only if you had never been there. I had my few civies washed before I came back and of course they smelled as bad, but only to civilians who had not been there.

Mike

VascodaGama's picture
VascodaGama
Posts: 1519
Joined: Nov 2010

Mike

Your exchanging posts on smells, etc., made me laugh. It triggered memories I have from the Southeast Asian countries too. The fun is that I also experienced the smell of the Mekong in Vietnam as well as in Cambodia, Thai and Laos. The smell is equally “delicate” in all those countries.
My visit to the region (in the 1980s) was business at the “hands” of the Japanese Aid. I built many bridges some old and some that were bombed or pulled down during the war. Famous ones are the bridge at Phnom Penh and the new bridge at Savannakhet that connects Thai with Laos on the way to Dong Ha in Vietnam.

In my visits to the sites I saw lots of "scars" from the war in burned builds and twisted metal. I recall the tension still very much present in the locals (Vietnamese), when in meetings or in or presence (foreigners). No exchange of conversations or smiles at the sites and photographing the project areas was complicated. Many shouted intimidated words from their thatch houses.
At the time my team and I were not allowed to travel up country without a “guide” (plain’s clothes police or military) and the trip could be done only on their stipulated vans with their drivers.

The smell did impregnate not only in the clothes but in my skin. Once back to Tokyo it would take several months to disappear completely. Probably the sweat produced by the local food (fish sauce and shoyu) was in my systems. Many years have passed but I still recall it very well.

On the other hand, I enjoyed the countryside scenery in those countries. Very green, women wearing triangle shaped hats and men in green clothes and green conical hats (probably done at their military factories you did not managed to pull down). A Japanese friend farmer warned me to not eat the local rice for the contamination with AO.

Memories that I do not regret too.

VG

dwhite1031
Posts: 26
Joined: Jul 2012

If you recall we had same appointment days at MDACC Mays Clinic last month. I remembered you had told me you'd have your veterans cap & I had hoped to see you and we could chat some but they decided I needed a rush ultrasound of "the boys" due to the bad paid I had been experiencing. And it put us on the fast track just to catch our flight home.

We go back November 12 & then I have robotic prostatectomy on November 28th at MDACC.

Just wanted to let you know I'm in your corner!
I admire your courage both as a Vietnam veteran and as a PCa warrior!

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

This week I go back to VA hospital to check my psa. If over 2.0, MDACC wants me back soon as possible for xray's and a Bone scan to see where my friend is?? Sorry we did not meet that day that puts face to the name, but there will be other days for I plan to be here longer than they say.

Thank for your service

God Bless

MLKisner
Posts: 14
Joined: Oct 2012

Please stay positive it is your words that have given me comfort. My husband is on Zytiga as well for about a month now. His was metasticized to the pelvic bone and in the lymphnodes and stomache area before we even knew he had it. I pray everday that he will live to see our 3 year old grow up. I pray that they find a cure for this awful disease soon. Stay positive, I will keep you in my prayers also. My new friend. God Bless!

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