CSN Login
Members Online: 11

New here...so scared.

aggator's picture
aggator
Posts: 8
Joined: Feb 2010

Hi everyone!

I am new to this site, and honestly can't wait to get accquainted and be apart of it. I am so scared and didn't know where else to turn. My dad is 64 years old and was diagnosed with an aggressive Stage 4 Prostate Cancer back in December 2009. After his biopsy and bloodwork, he had a rating of 8 and PSA of 77. We can not be certain how long he has had the cancer, but I suspect it has been quite some time. What we do know is that it has already spread to his lymphnodes and bones. It is in his skull, femur, rib, clavicle, jaw and lower spine. I am so scared. He also sufferes from Diabetes, Obesity and Hypertension.

I have been educating myself as much as possible...books, magazines, the Internet and even at my dad's Oncology appointments. He has started receiving hormonal therapy as he is not a candidate for surgery since the cancer has metastasized. He has only had his first shot of Lupron and is on Casodex for 30 more days for a total of two months. He is weak and tired already. We will find out Monday if his PSA went down or not.

I just have alot of questions and concerns. I guess I am looking for support, stories & experiences(good or bad) and any answers...anything really. I just want to be certain we are ABSOLUTELY getting the standard of care for him right now. I am also worried because they say long term use of Lupron can cause osteoporosis, which we are now extremely concerned since the cancer has already spread to his femur and spine. And with just that, there's always the risk of fracture. I just don't want the Lupron, which is what is helping him control the cancer, cause his bones to get weaker, especially since he is overweight. I am curious about what to expect from this disease in the upcoming months or years. Is there any special diets that can help? I am curious about Zometa as well. Does anyone have any experience with this drug? It is being offered to my dad as a double blind clinical trial. I have done some research online, and I know there are risks. I want to hear from someone other than the doctors. I am curious about life expectancy in cases like my father's. He has alot more to experience in life, especially with my twin sister and I. Such as being a grandpa and walking me down the aisle. I think I have probably rambled a bit too much tonight. I would love to hear from you all and hope I do. Thanks in advance for your help and guidance.

jimbeam50
Posts: 47
Joined: Oct 2008

My husband is stage IV prostate cancer with mets to his bones. He has been treated with Zometa every month since June 2008. It is a 15 minute treatment and the only side effect he received was increased bone pain for a few days after. They recommended taking ibuprophen during that time. It does strengthen the bones that's for sure. Yesterday I talked with a man who is also receiving Zometa and he said he has had no side effects. Zometa would be the least of his worries at this time. Sheila

aggator's picture
aggator
Posts: 8
Joined: Feb 2010

Thanks for your honestly Sheila. It's good to hear it will definitely strengthen the bones. I have alot of reading ahead of me on this drug. I just worry since Diabetes is considered the primary cause for kidney failure, and I don't know if taking a drug that has a side effect that damages the kidneys is a good idea. I am not sure which is the lesser of the two evils. Thanks again.

In the short time that we have been dealing with this, I have realized that no one cares about you more than YOU! We will hopefully find out more on his next appointment whether or not my dad will choose Zometa.

thanks.

daysmi
Posts: 1
Joined: Mar 2010

My dad recieved his diagnosis of stage IV, mets to the bone probable today. My mom is crying, my kids are not talking, and I am researching on the internet. His PSA was 50 and he is an active 70 year old we called "the machine" because he was sure to out last us all. The bone scan will be done on wed, 3/24 and we will not meet with the doctor for those results until 3/31. Does everything take a week? It was encouaging to hear your story.

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

I am so sorry you have to be here.

There is a lot of valuable information to be found here. You might also try healingwell.com.

It is a very active site for prostate cancer and at any time has a few hundred members chiming in on most topics. You may find a few more answers to your specific questions there.

Bless you and your family,

Sonny

aggator's picture
aggator
Posts: 8
Joined: Feb 2010

Thanks Sonny! It is greatly appreciated. Good luck to you.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Best wishes to you and your family as you start on this journey. There is tremdous support on this site and also on healingwell.com site. It is normal to be scared. Read and study like you have been. Ask questions, be there for you dad as you have been. As you know a rating of 8 - 10 is not good.

My dad has pc and his was caught early about 11 years ago and he is doing well. I was diagnosed last year and had Surgery in August 2009 and doing well. I do not have any experience with the hormone shots but others will be giving you there thoughts soon.

Take care.

Larry age 55

aggator's picture
aggator
Posts: 8
Joined: Feb 2010

Thanks Larry. I am looking forward to all the support I can get. It is very hard on my sister and I because our parents live up North and we live in the South. We feel like we need to be up North with them as much as we can. I am with them now helping to get them started and organized. I just don't know what to expect, ya know? Thank you again!

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Don't forget to give your dad some good ideas on diet, vitamins and other things. Since my cancer was considered borderline aggressive I've changed my eating habbits and doing all kinds of vitamins and natural things. I have a positive margin noted post surgery which means the cancer went up to the edge of the specimens sent to the lab. Did the cancer go beyond the edge? They don't know. So I'm doing all I can to keep it at bay. I know your father is in a different catagory but I honestly believe it can not hurt to try diet changes and other things.

You mentioned you live in the South. Where at? I live In Chattanooga Tn, Sonny lives in Florida and I know some other men on the forum live in Georgia, Alabama, Mississippi.

Keep asking the questions.

Larry

aggator's picture
aggator
Posts: 8
Joined: Feb 2010

Hi Larry,

I have been doing some research to find diets that may be beneficial to my dad. It can be a bit overwhelming trying to find a diet that caters to all his conditions. i.e. a heart-healthy diet, a healthy weight-loss diet, if there is some sort of a cancer fighting diet or foods...all combined with the fact that my dad has always been a steak and potatoes kind of guy and isn't one for fruits and veggies. Nevertheless, I am still looking and hoping to find a happy medium between them all.

Do you have any diet/vitamin/suppplement suggestions? Or maybe you can point me in the right direction. The only vitamin he is taking now is Calcium. Should he be taking a multi-vitamin? I am still learning about this disease and the types of things that are available to aid my dad in his journey. I just want to make sure we are doing everything in our power to combat this disease at home as well as at the Doc's. I am trying more than my parents are.

My twin sister and I also live in Florida. The funny thing is that I have been to Georgia, Alabama, Mississippi and Tenneessee all before :) Thanks Larry.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

First I'm not a doctor and I'm not in the medical field or nutrition field but I will tell you what I'm taking. Does it Help? I honestly don't know but from research I believe that they have shown good things in studies.

First a Heart healthy diet is a prostate friendly diet. I have stopped eating Red meat as of May 2009. Still eating Chicken and fish. Yes I know I love red meat as your dad does but made the decision.

I do not use any caffeine or coffee. Just person preferences there.

For supplements I take Vitamin D, and a male muti volumn called MaleGard you can google it. It is designed with several things in it that you will read about. No I did not take it before I had prostate cancer. Started after I found out with Gleason 7. PSA 5.3.

I also take Acai Berry, Green Tea, pomegranite and Green Barley all in capsule format that you can get at Health food stores or online. I also take Flax Seed's with my morning granola cereal. I was taking flax seed oil but some say its good and others say not good. Though one book stated if you are going to do flax then go with the seeds over the oil.

I'm eating more green vegetables and more fruit. Also I'm going to the local YMCA 2-3 times a week. Since being diagnosed and having my surgery in August 2009 I've lost 50 pounds and feel better. My PSA has been checked 2 times since surgery and both were 0. I did have a positive margin which means the cancer went to the very edge of the specimens sent to the Lab for review. Did cancer go beyond the edge? No one knows so getting the PSA checked frequently to keep on top of things. I can then have follow up radiation and nip it in the bud.

Good luck with your father. I've read many good things of even the bad cases of Prostate cancer getting the PSA down and extending the life. Not to be negative but we all know that we will die at some point in time. Your Dads does not sound good but they have caught it and can know start different things to make him more comfortable. Treasure each moment with him and be Positive! Can you go up and be with your dad for his next appointment? Is your mother still alive and with him or someone else?

Take care and keep in touch.

Larry

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

removed. Posted multi times

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

removed. Posted multi times.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

Sorry to hear of a metastatic diagnosis.
I was diagnosed with metastatic PCa in August of 2007, with a PSA of 798. I'm still alive and I'm feeling better now than I was then! I've been on Lupron for over two years, along with Zometa. I was on Casodex until it stopped working. The Lupron/Casodex combination is indeed the current "standard of care" for your father's stage of disease. It supposedly works for most people for about two years, then the PSA starts rising again. It worked for me for only about 4 months. But it is still important to keep the testosterone level down, even if the disease has, like mine, evolved into Hormone-Refractory PCa. I have not had any noticeable side effects from the Zometa. The Lupron is a different story. Eliminating testosterone causes many of the same types of side effects as what women get from menopause - hot flashes, loss of muscle mass, etc.

When the hormone therapy is no longer effective, the next standard of care treatment is chemotherapy with docetaxel. I have had that too. It was not as bad as I had feared, but it's pretty rough, especially for someone with other health problems. Then after a while, that quits working too. Basically, since none of the treatments are 100% effective, what they do is selectively breed PCa that is treatment-resistant, until they run out of treatments. I wish I could give you a more hopeful prognosis than that, but the progression through the various available treatments takes years, and as I can attest, this survival time can have a good "quality of life".

Diet is very important! But it is difficult to find reliable information, because there is so much garbage out there. The ACS has good info on their web site under "Making Treatment Decisions":
http://www.cancer.org/docroot/ETO/ETO_0.asp

I wish the best of luck to you and your father on this journey.

aggator's picture
aggator
Posts: 8
Joined: Feb 2010

I appreciate your honesty, and thank you for the information. This is exactly the kind of information I am seeking and want to hear. Good or bad. I had an idea of what treatment would be like and you've just confirmed it. I just need to continue to hit the books. Internet and ask questions!

I suppose my biggest fear is not knowing what to expect because we can not predict what the cancer will do...I think my dad is leaning toward taking the Zometa if he is still a candidate.

Thanks again! And best of luck to you as well. I see this Site becoming a great resource for myself and my dad. :)

Trew
Posts: 892
Joined: Jan 2010

I remember getting the bioposy results back. I was scared, too. And I was scared before surgery, and before radiation. Hormone shots just make me upset. I still don't understand WHY this has happened to me. But here I am now, an active participate on a cancer board.

gjeck6874
Posts: 9
Joined: Feb 2010

Diagnosed with a PSA that rose from 4.0 to 5.8 between Nov. '03 and Jan. '04 I had biopsy that revealed I had prostate cancer. Underwent Radical Prostatectomy in March 2004 revealing it had escaped the capsule (Gleason 3+4). As additional treatment I underwent 37 sessions of external beam radiation. This combined treatment has held my PSA to 0.1 from July 2004 until Dec. 2009 when it rose to 0.2 I'm planning on a second opinion before I might have to begin a hormone treatment.

So, in the past month I have found the following items that you might want to research:

Pomegranate Juice (8 oz. per day)
Green Tea
Pumpkin seeds (1/4 cup/day) or Pumpkin Seed Oil Capsules
Sesame Seeds
Tomatoes
Chili Peppers
Avocados
Organic Broccoli
Spinach
Soy Foods
Whole Cranberries
Vitamin D

Besides necessary medications and treatments, this list can be a starting point.

Good luck, I wish you well ... for all that wishes may be worth ...
I hope that love and strength are with you both.

Geoff K.

aggator's picture
aggator
Posts: 8
Joined: Feb 2010

Geoff,

Thank you so much for the information. I am trying to do as much research as I can whenever I have free time. I really appreciate the starting point. I think the most frustrating part of all of this is that my dad doesn't seem very motivated and willing to take a proactive approach with diet and exercise in addition to the standard of care he is receiving from his doctors. After receiving one 'shot' he seems to think that he is doing all he needs to for this disease. Diet and exercise are the part of his life he has control over, and he chooses not to do anything at all or very minor changes. He is also diabetic, has hypertension and is considered obese. For me it's a no brainer. Diet and exercise will aid in the healthy weight loss he needs which will help control his diabetes and hypertension. In addition, exercise helps keep your bones strong and with the cancer metastisized, he needs strong bones to hopefully prevent fracture. And the weight loss will also help take some of the stress/strain off of his cancer filled femur bones.

I don't know...It is hard to help someone who doesn't seem to want to help themselves. However, I am not discounting the efforts he has made recently, although diminutive when it comes to his diet, he has made a few. It just frightens me beyond no belief because I don't feel taking baby steps will get you very far, in his particular case, when his disease is already so aggressive. I am so sorry for going off on a tangent. I guess I feel better when I get some of these fears off my chest.

Anyway, I wish you all the luck as well. Thanks again.

Connie1954
Posts: 4
Joined: Feb 2010

As I posted before, my Dad has a PSA of 43. He took Lupron shots for several months and they didn`t work. His age(81) is going against him besides being a diabetic. My whole family is a mess. We are so scared of what is coming. I don`t know if Daddy is strong enough to go through chemo but I think that`s what he has opted to do. I will say a prayer for you and your family. My Dad is a Christian and I know that will help him through all this.

dakotarunner's picture
dakotarunner
Posts: 97
Joined: Feb 2004

Hi Connie

Sounds like your Dad figures that between him and God, that he is strong enough to go with the chemo. If he is at ease with it, then more power to him. From my own experience with PC, surgery, and recurrence, I think I have been more at ease with facing and fighting cancer than my family hs been. I know everyone looks at things differently, but this is my own take for me.

Best to your Dad and your whole family. Thanks for comiing to this site and commenting. Look to hear more from you as your Dad takes on this battle.

Dakotarunner

aggator's picture
aggator
Posts: 8
Joined: Feb 2010

Connie,
Your situation is different from mine and my dad, but I have an idea of how hard this is. Has he started chemo? I just want to thank you for adding to the board and the prayer for my family. I do believe in the power of prayer and I, too, will pray for your dad. I wish you the best.

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 2000-2015 © Cancer Survivors Network