What's Next? I am so Scared

MLKisner

Hello, My husband was diagnosed with Stage 4 Metastatic Prostate Cancer on New Years Day 2012. His PSA was 45. He just turned 51 last week. He was on the Lupron Injections and Casodex and the PSA dropped to 1.78. On our last trip to get his treatment last week they said his PSA was up to 14 there were swelling in his lymphnodes in his abdomen. Bone scan showed no change. They are now switching him to Zytiga said that it would treat it more aggressive. I have to be honest We have a 3 year old who thinks daddy is a superhero and he is my superhero, I am Soooo SCARED I can't breathe. My husband is a pillar of strength and determined to beat this but nothing I read is positive about the odds. I just don't know what to do. I am hoping someone out there can give me a ray of hope to hold on to.

JFredB

so scared
Hello,
I'm not sure how to answer this but I will try. Take a deep breath, actually take a few deep breaths. The feeling that you get when things are out of your control can perhaps be the scariest feelings that there are. I know, I am fighting prostate cancer too. Try not to dwell on possible outcomes but stay in the moment where you can gather your wits and strengths to fight this thing. I think your husband sounds like someone who has great inner strength and determination. You can be proud of his stance and you need to try to do everything you can to aid in his research and treatment. If at all possible try to keep the thought that miracles, positive outcomes, new treatments, and unforeseen positive changes are all possible. They have happened and they could happen to you too. I'm not telling you to live outside reality because reality can be the stimulus that restarts the battle against this thing. I hope his new aggressive treatment is the key! I hope this helps and I will keep your family in my prayers.
JFredB

Beau2

Mike Milken
The best known person that I know of who has stage 4 prostate cancer and has been succesfully fighting it for many years (20?) is Mike Milken. To find out about his approach, you may want to google his name and add prostate cancer .... or you may want to start with the foliowing link,

http://www.healingwell.com/community/default.aspx?f=35&m=838000

Hope this helps. Best wishes in you and your husbands fight against PCa.

Samsungtech1

Treatment
MLKisner,
You do not give alot of info. Did he recieve radiation, RP, or did they just go with HT? There are tests, look at several older posts that they cando to determine if it has spread and where it is. Unfortunately I can not remember them because the HT treatments seem to be affecting my memory. I am stage 4. I do not worrytoo much because it is something that my body is fighting and I can only do so much to help it. My Onc said I might beat it because the nodules in my lungs went away after radiosurgery. The cancer in bladder has not returned. My Onc feels it might go to brain. Not sure. The rad, Onc said five years. You cannot worry about what might be, and do not believe anything you read on web about survival rates. They will scare you.
They are coming out with new treatments and trials almost monthly. When one thing fails they have another one. Make sure you check on trials. They can switch you to other HT drugs, and radiation treatment when appropriate.

I will not tell you not to worry because this is scary stuff. Check out Dr. Snuffy Myers book on cancer and diet. Diet plays a big part in fighting cancer. Exercise as well. This book has great info.

Good luck,

Mile

Raddad

Mlkisner
Ok calm down, yes I
Mlkisner

Ok calm down, yes I know thats hard. Yes there is hope - your superhero can beat this crap.

I've found the pdf available here is a great help in understanding

http://malecare.org/advanced-prostate-cancer-program/

I suggest you look into Healing Well
http://www.healingwell.com/community/default.aspx?f=35

There are a lot of ladies their who can help you out.

Hugs

Bud

We will beat this crap

laserlight

Raddad said:

Mlkisner
Ok calm down, yes I
Mlkisner

Ok calm down, yes I know thats hard. Yes there is hope - your superhero can beat this crap.

I've found the pdf available here is a great help in understanding

http://malecare.org/advanced-prostate-cancer-program/

I suggest you look into Healing Well
http://www.healingwell.com/community/default.aspx?f=35

There are a lot of ladies their who can help you out.

Hugs

Bud

We will beat this crap

Scared
Prostate cancer is bad, you have every right to be scared. I have been fighting this monster since Jan of 2011. The good news is that there are a number of treatment methods that can help with treatment.

The one thing that I learned from this is that I now take it a day at a time. There are a lot of items that are not important anymore. I try and leave the negitive people and mind sets alone and ignore them

My advice is that you both spend as much quality time with you son as possible, he will need this. His super hero is a Dad that is fighting cancer

Keep up with the research and treatments, I myself refuse to give in and will fight.

Cancer does cause problems and major life intruptions. It was a major kick in my gut to myself. And has caused major family upsets.

The one good thing is that my son wants to do a 30 state buckett list road trip with me, so if everything works out we will do it. My son is 27 years old and my wife has given me permission. My daughters are behind it

Treatment is very importment, But also take a break and relax. This is a difficult journey for both of you.

Hang in there, There are a number of memebers here that have fought this monster we are all brothers in this fight and will help you out

So much for my input

Kurt

hunter49

Hi and calm down. There are
Hi and calm down. There are a lot of weapons in the hanger to bomb the beast. Your superhero and you have a fight on your hands but it is not over. I have a friend at Hopkins which is looking into something new for late stage disease please look at this sight, http://www.nejm.org/doi/full/10.1056/NEJMoa1207506. This is used to extend the life of terminal patients however it is showing great results in early detection of stage 4 PC patients and looking to use it in in stage 2 and 3 disease.

Gmad

Scared
I know how hard this is for you. Check out ladies only forum for prostate cancer. These ladies are full of useful information and very caring.
Hugs
Diane

MLKisner

JFredB said:

so scared
Hello,
I'm not sure how to answer this but I will try. Take a deep breath, actually take a few deep breaths. The feeling that you get when things are out of your control can perhaps be the scariest feelings that there are. I know, I am fighting prostate cancer too. Try not to dwell on possible outcomes but stay in the moment where you can gather your wits and strengths to fight this thing. I think your husband sounds like someone who has great inner strength and determination. You can be proud of his stance and you need to try to do everything you can to aid in his research and treatment. If at all possible try to keep the thought that miracles, positive outcomes, new treatments, and unforeseen positive changes are all possible. They have happened and they could happen to you too. I'm not telling you to live outside reality because reality can be the stimulus that restarts the battle against this thing. I hope his new aggressive treatment is the key! I hope this helps and I will keep your family in my prayers.
JFredB

Thank You
The Cancer Treatment Centers of America were reccomended to us, Any information on them?

MLKisner

Samsungtech1 said:

Treatment
MLKisner,
You do not give alot of info. Did he recieve radiation, RP, or did they just go with HT? There are tests, look at several older posts that they cando to determine if it has spread and where it is. Unfortunately I can not remember them because the HT treatments seem to be affecting my memory. I am stage 4. I do not worrytoo much because it is something that my body is fighting and I can only do so much to help it. My Onc said I might beat it because the nodules in my lungs went away after radiosurgery. The cancer in bladder has not returned. My Onc feels it might go to brain. Not sure. The rad, Onc said five years. You cannot worry about what might be, and do not believe anything you read on web about survival rates. They will scare you.
They are coming out with new treatments and trials almost monthly. When one thing fails they have another one. Make sure you check on trials. They can switch you to other HT drugs, and radiation treatment when appropriate.

I will not tell you not to worry because this is scary stuff. Check out Dr. Snuffy Myers book on cancer and diet. Diet plays a big part in fighting cancer. Exercise as well. This book has great info.

Good luck,

Mile

Sorry
Sorry I was so vague, This is all new to me and I don't really understand it all. The only treatment they have done so far has been Hormone therapy. Injection every 3 months a Bicaultimide every day. Now they are starting him on zytiga. His cancer is stage IV metastatic, spot on the pelvic bone, all seems to be in the pelvic region, and lymphnodes in the abdomen. Not sure if this helps.

MLKisner

laserlight said:

Scared
Prostate cancer is bad, you have every right to be scared. I have been fighting this monster since Jan of 2011. The good news is that there are a number of treatment methods that can help with treatment.

The one thing that I learned from this is that I now take it a day at a time. There are a lot of items that are not important anymore. I try and leave the negitive people and mind sets alone and ignore them

My advice is that you both spend as much quality time with you son as possible, he will need this. His super hero is a Dad that is fighting cancer

Keep up with the research and treatments, I myself refuse to give in and will fight.

Cancer does cause problems and major life intruptions. It was a major kick in my gut to myself. And has caused major family upsets.

The one good thing is that my son wants to do a 30 state buckett list road trip with me, so if everything works out we will do it. My son is 27 years old and my wife has given me permission. My daughters are behind it

Treatment is very importment, But also take a break and relax. This is a difficult journey for both of you.

Hang in there, There are a number of memebers here that have fought this monster we are all brothers in this fight and will help you out

So much for my input

Kurt

Thank You
Lets kick this Cancers Butt....I love the road trip idea. I hope my husband gets to take a road trip with our son one day. He is only 3.

MLKisner

Gmad said:

Scared
I know how hard this is for you. Check out ladies only forum for prostate cancer. These ladies are full of useful information and very caring.
Hugs
Diane

Where can I find this site?

Where can I find this site?

Swingshiftworker

MLKisner said:

Where can I find this site?

Where can I find this site?

Caregivers' Forum
This is the link to the Caregivers' Forum sponsored by the ACS. It's not limited to PCa and its participants are primarily (but not exclusively) female: http://csn.cancer.org/forum/138

The people there should be able to provide you w/the support you need/want and direct you to a PCa female only site is there is one.

Good luck!

mrspjd

Swingshiftworker said:

Caregivers' Forum
This is the link to the Caregivers' Forum sponsored by the ACS. It's not limited to PCa and its participants are primarily (but not exclusively) female: http://csn.cancer.org/forum/138

The people there should be able to provide you w/the support you need/want and direct you to a PCa female only site is there is one.

Good luck!

Emotional and Educational PCa Support
MLK,

From one PCa wife to another, welcome to this PCa forum and to the PCa community, in general. I’m very sorry that you and your husband are facing the challenges of PCa. As a woman, a wife & a mother, I understand your fear and that PCa is a scary diagnosis and journey, not only for our husbands, but for us, the wives, as well.

Please know that emotional and educational support/resources are available for you, whether on this forum, other PCa online forums (co-ed or gender specific), and also in well established and knowledgeable face to face PCa networking/support group meetings that welcome women/wives. Everyone’s needs for caring support and knowledge are different. I have found that the “personality” and PCa educational base of online and face to face forums/groups vary greatly. Sometimes it may take some time and exploration to find the right “fit” for the PCa “group” that best meets your needs.

To find a list of ladies/women only PCa online forum options, just Google “women only prostate cancer forums.” Keep in mind that even though a website may indicate “women/ladies only” or “men only,” on the internet, there are few guarantees that the poster behind the user name is actually who she/he represents themselves to be. If you need assistance in locating these or other online forums, or face to face PCa networking/support groups, etc., just LMK. Please know that you are ALWAYS WELCOME to continue to post here, on this ACS sponsored PCa forum.

I wish you and your husband all the very best on your PCa journey together.

mrs pjd
Wife of a T3 stage PCa Survivor

ralph.townsend1

mrspjd said:

Emotional and Educational PCa Support
MLK,

From one PCa wife to another, welcome to this PCa forum and to the PCa community, in general. I’m very sorry that you and your husband are facing the challenges of PCa. As a woman, a wife & a mother, I understand your fear and that PCa is a scary diagnosis and journey, not only for our husbands, but for us, the wives, as well.

Please know that emotional and educational support/resources are available for you, whether on this forum, other PCa online forums (co-ed or gender specific), and also in well established and knowledgeable face to face PCa networking/support group meetings that welcome women/wives. Everyone’s needs for caring support and knowledge are different. I have found that the “personality” and PCa educational base of online and face to face forums/groups vary greatly. Sometimes it may take some time and exploration to find the right “fit” for the PCa “group” that best meets your needs.

To find a list of ladies/women only PCa online forum options, just Google “women only prostate cancer forums.” Keep in mind that even though a website may indicate “women/ladies only” or “men only,” on the internet, there are few guarantees that the poster behind the user name is actually who she/he represents themselves to be. If you need assistance in locating these or other online forums, or face to face PCa networking/support groups, etc., just LMK. Please know that you are ALWAYS WELCOME to continue to post here, on this ACS sponsored PCa forum.

I wish you and your husband all the very best on your PCa journey together.

mrs pjd
Wife of a T3 stage PCa Survivor

It's Shame!
I think with a lot of good thoughtful thinking, you and yours will survive for a long time. At the age of 51, he can beat this monster back and live 20 30 years. With the new drug's out there, time is on his side! As Vasco at this site said, there is going to be a magic shot coming soon!

You hang in there, this hard on you. As I know or think I know how my wife feel. There is a lot great people here, so ask away.

God bless you,your hubby and specically your son. Smile for every day y'all are together!

MLKisner

ralph.townsend1 said:

It's Shame!
I think with a lot of good thoughtful thinking, you and yours will survive for a long time. At the age of 51, he can beat this monster back and live 20 30 years. With the new drug's out there, time is on his side! As Vasco at this site said, there is going to be a magic shot coming soon!

You hang in there, this hard on you. As I know or think I know how my wife feel. There is a lot great people here, so ask away.

God bless you,your hubby and specically your son. Smile for every day y'all are together!

Thanks Ralph
Thank you Ralph, I am hanging on to your words! Take Care, keep your chin up. Know that you are being prayed for in WV as well.