Advanced Prostate Cancer
4,813 members4,629 posts

My new results

Well i just got my blood work back everything going in right direction. Dx in August with stage 4 with mets. My treatment is hormone therapy , Zytiga + Prednisone and just started Xgeva. My psa is still going down .18. from .38 a month ago. I started out with just hormone treatment but since seeing Dr Vaughn at Univ of Penn i have seen great improvement. Only side effects so far are Hot Flashes. He is basing he's treament on the Stampede and Latitude studies. I see where some patients have been on this for 5 years and is still working. I have hope now and don't go back for 4 months. I am sure this does not work everyone but it seems to be getting good results. Just thought i'd share. Thinking good thoughts for everyone. Jon

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Happy to hear you are doing well, I think I've heard of dr. Vaughn at Penn, my husband is seeing an

Oncologist at Lankenau dr. Ali. I'd like to get a

Second opinion. I'm not that happy about my husbands treatment.

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We are at Foxchase and saw doctors at U Penn and Jefferson also before making our decisions- We really like the doctors we saw at all 3 places and all 3 gave same treatment options- plus they all know each other and discuss clinical trials, etc. Chose Foxchase mostly because of proximity but liked all three. If you aren't happy you should def go check some other places out. In my opinion, you need to be comfortable with who you are seeing- I still do a lot of my own research and ask our oncologist and team about things- but I like where they are going and that they will listen to me.

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If your not happy would definitely get a second opinion . Dr Vaughn and Univ of Penn i would highly recommend. Best wishes and hope to hear your husband gets great treatment Jon

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I was dx in March 2017. I went to Temple Fox Chase, Jefferson and finally settleling with M.D. Anderson in Camden, NJ. All 3 oncologist encouraged the same treatment per the Chaarted/Stampede Trial. I finished 6 cycles of chemo and continue to be on lupron and xgeva. I 've had great results so far. I chose M.D.Anderson because I felt the warmth from the nurses in the infusion room. They said things like, we will take good care of you, we will always keep an eye on you. All the Oncs were nice and caring, but the nurses sold it for me.

Nick

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Hi Nick, Happy to hear you are doing well.. My husband has been on this journey for nine plus years and still getting treatment. He has been at Lankenau hospital from the start. No cure yet but can be treated. Take care and hang in there.

Lynn

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Thank you Lynn. Lankenau is a top notch hospital in the Philly area. I considered it but the distance was the difference. There are so many great cancer centers in the Philly area. I'm sure your husband is getting good treatments. You have to choose where you feel the most comfort. Starting with the doctors, nurses, administrative assistants, and even the security guards and janitors. I really felt the love from M.D. Anderson. Keep us posted and I am sure you and your husband will have a healthy 2018.

Nick

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Thank you Nick, I've also heard great things about M.D. Anderson. My daughter in law had both breasts removed do to cancer this past summer. Loved her surgeon,nurses and the care she received.

You also keep us posted and wishing you the best also. Take care!!

Lynn

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That's awesome- and what people should look for- need to feel comfortable, taken care of, and listened to!

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Thank you and I'll see if I can talk him into traveling lol!! we are in the suburbs of Phila, not that far but he does not like driving in town.. He's real stubborn, I'd like a second opinion though.?? We shall see. Best wishes to you also, keep up the fight!

Lynn

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Great news! I think that the Stampede and Latitude trials are going to be real game changers in the fight against prostate cancer.

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Thanks Dr Who! I am hoping it is. the results of those studies can add years to our lives . Anyway thats what i am praying for. I think my wife is more happy then i am lol. makes my heart happy to see her smile again. Keep me posted how you are doing my new friend. Jon

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Hi Dr who, I'm sort of out of the loop? I'm not up on all the new treatments, what Exactly are the Stampede and Latitude trials?? Oh, had to change my husbands surgeon appointment do to the weather for the lymph node. Don't go until this coming Friday the twelfth.

How are you doing Dr. Who?

Lynn

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Dear Lynn;

In addition to giving each other support, the sharing of information is one of the things that make this sight great.

I used to have access to a wonderful primary source article about these trials, but no longer have access to them. Here are some references that discuss the trials. By there nature, they are more generic.

cancer.gov/news-events/canc...

ascopost.com/News/55699

nejm.org/doi/full/10.1056/N...

Here is an article about having surgery even if the cancer has spread to the pelvic area (as was the case for me).

onlinelibrary.wiley.com/sto...

Just as a reminder, my PhD was in chemistry, not medicine. My advice is from one cancer warrior to another.

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Hi Dr. Who, thank you for all your help, I'll try and look for this information, like I said I'm not very good on the computer. Yes, from one cancer warrior to another. I to think sometimes it's harder on the care giver than the cancer patient. I know how my husbands cancer has effected me. Thank you for all your help.!! Keep me posted.

Good health in "2018"

Lynn

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Hi, just me again, I just read the articials you sent me. I wonder what is next for my husband, taxotere chemo, Zytaga and Xtandi failed to work for him? This Friday coming we will see the surgeon for the one lymph node. I'm really anxious to send after biopsy where we will go from here???

I'm worried dr. who.

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Please know that we are all praying for the two of you. Yes it is scary. But do not let the fear overtake you. I know those are easy words to say. There are days where I have to force myself to get up, where I have problems following my own words. I do know that there are many warriors here that have it a lot worce than my advanced cancer, but have been here for over a decade.

Dear Lynn; I wish we had a magic wand and make cancer automatically disappear. The pain and worry it gives the caregivers is hard for me to bear. But there is hope. Again, there is nothing, repeat nothing in what you have shared that would indicate your husband has decades (plural) ahead of him. I just hope that knowing people here understand what you are going through helps you.

Please continue to share with us your doubts, fears and concerns. We are all family here and want to help you with your burden. I firmly believe that it harder emotionally on you and all the caregivers here than those of us with cancer. God bless all caregivers.

Please accept this hug from the web.

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Dear Dr. Who,

All I can say is Thank you so much. You have such a wonderful way with words and I can tell you are very caring person . You have given me hope and yes we are all like famiily here. I wish I had such a way with words. It's hard for me to put into words how my heart feels. Dr. Who I've know my husband since high school, we've been married fifty four years. I have one daughter and a son. My husband was in construction, he had his own heavy

Equipment, loaders, backhoes etc. worked hard all his life. After he first became sick, he was stage four then at the age of sixty five. Sold all the eauipment except one loader.i think it was hard for him to let go. It's been a long hard road these past ten years, but I do still have hope. My love and prayers go out to all that suffer this nasty disease . Dr.Who, you say you were a chemist. Tell me about yourself if you get the chance. Well, I'm praying for you too and we will all support each other.

I joined this group for my husband, I read him the posts. He's worse them me when it comes to technology!! Lol!!

Sincerely, Lynn

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Dear Lynn;

For someone who said they do not know how to wright, you did a wonderful job. Per your request, here is my background. It is a bit long, but you asked for it...

First the boring stuff: When I was 58 years old I was diagnosed with Stage 4D1, T3N1, Ductal Cancer. I had digital exams since I was 40 and PSA tests since I was 50 and they always came out negative, that is, until they did not. My PSA was just 4.7 when they finally found it. Ductal is a rare form that effects less than 0.4% of all cancer patients. It is very hard to treat and does not respond well to chemo or radiation (though I still had radiation). Had to argue with every doctor about Ductal as none of them ever saw a case before and they did not know how to treat it. Had surgery (even though the cancer spread to the pelvic area), 38 rounds of radiation and I am on Lupron and Zytiga. Have to have scans every three months as my cancer does not produce that much PSA. So far the cancer is being kept down.

Now the good stuff: I was born with dyslexia. As they did not know that much about it in the sixties they thought for a while I was retarded. That motivated me to not only graduate but graduate with a PhD in a hard science. I had to work out my own way of doing things as normal learning did not work out that well. As my initials are WHO and I have a PhD, I was called “Dr WHO”.

Worked for an international chemical company. They made allowances for my dyslexia. Good move on their part as I ended up being the head chemist in my division with over 120 issued patents. I met my wife at work when I parked my car in “her” spot. To end the fight over who’s parking spot it was, we got married. We both took early retirement when our company started to transfer the R&D to India and Mexico.

We hike, walk the dogs, go on week long bike rides, kayak and scuba dive. Unfortunately, since I got cancer I can only do a fraction of what we used to do. In some ways that makes me appreciate even more what I can still do.

We now enjoy each other more than ever. Tonight we will have a fire in the fireplace, listen to a 40 year old LP record with a glass of wine.

Even with cancer, I love my life.

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Your email did not bore me. I think you had a

Pretty

Fun life.!! And Had a love of

The out doors.

Cute story how you met your wife.

I. With you, I try and

Enjoy

My

Husband more so now and appreciate our time together. Thank you for telling me a little bit about yourself.

Sincerely,

Lynn.

This narrow

Space

Won't let me make sentences?

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Yes. It is getting hard to respond. We better end this line before there is not even room for one letter.

Let’s both have a great weekend!

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O.k.

Good

Weekend

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I ( knew) that you weren’t just another average joe, Dr_Who..

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Everyone here is special Lulu700. We are all warriors!

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Hi dr.Who, tomorrow we go to see the surgeon

About Sam's lymph node, can't say that I'm not nervous. I always feel better after listening to you!!

Hope you are doing o.k. 😊

Sincerely, Lynn

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We all will be praying for the two of you. Remember, no matter what they say, you two should still have decades together.

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Don't know about decades.? We are in our seventy's lol!!

How do I post to just you???thank u Dr Who!!

Lynn

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Last summer they added Zytiga to the Lupron that I had been on for about a year. So far so good. I know what you mean about your wife. I truly believe it is harder on our caregivers than it is on us.

Let’s both keep up the good work!

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I added Zytiga + Prednisone to the Lupron I have been on since May 2015. Over the last 18-months my PSA had crept up from 0 to 1.9. A week after starting Zytiga it is already down to 0.9. Very encouraging treatment option!

James

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I am so glad to hear that James.

Bill

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Great news James. Do you have any side effects? Mine is only hot flashes. I believe it will get lower and you will have great results my friend.

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Thanks! No new side effects. Already had hot flashes from ADT, which I take Gabapentin to reduce.

Really pleasantly surprised that adding Zytiga has been easy.

Best,

James

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Good stuff, sir!

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If you and your oncologist are appreciative of the findings of STAMPEDE, CHAARTED and LATITUDE Trials in treating your advanced PCa, definitely you will get the maximum millage.

My best wishes for good results with your treatments!

Sisira

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God Bless and praying for a continued improvement for you.

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Good to hear. My husband was Diagnosed in August 2017. Stage 4 with bone Mets around 5 areas. Started with lupron 3 month dose and 30 days casodex in September —-PSA was 29. PSA was decreasing. In December psa was 3.14 and he started Zytiga with 5 mg prednisone and psa was 1.08 yesterday. Also taking calcium citrate with vit d (400/500) two times a day which he began in September. Initially he saw a MO at Mass General in Boston and is now being followed by a MO at a MGH satellite closer to where we live.

Looks like the results of the stampede and latitude trials are changing the course of this awful disease . We pray for a long positive result from the regimen he is on...lupron , Zytiga, prednisone 5 mg, and calcium/vit D. Good luck to all who are on this journey.

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