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Posted 8/12/2011 9:41 PM (GMT 0)

My husband was 40 when dx. That was 1 1/2yrs ago and we just got the news that he only has around 12mths left.  He has had 2 x hormone therapies, surgery to remove lymph nodes in groin, radiation, HDR Brachytherapy and 2 x chemos and all has failed. The cancer is in many bones and now his liver.
I have been following everyone for a while now but just never got around to posting anything. Had to get this out of my system I think! we knew he didn't have many years left but actually hearing it was really hard. We have an 18yr old son and a daughter who turns 4 on Monday.

My hubby-Gavin- is still working but plans on leaving soon to spend time at home with his family. He starts a trial on 1st September for Cabazitaxel. Have heard good things about it but his cancer is so aggressive. I know everyone reacts differently to the chemo but I would like to hear some positive stories about the cabazitaxel, then again all stories, good and bad! I can handle anything now.

Karen

Posted 8/12/2011 9:57 PM (GMT 0)
Snoopy, I'm very sorry that you and your husband find yourselves in this situation. I have a son who is as old as your husband was when first diagnosed, and I've been urging him to have a baseline PSA drawn.

I don't know anything about Cabazitaxel, but I sure hope they find some way to put your husband into remission. All I can do is add you to my prayer list. There are guys on this site who can speak about advanced cases, and I'm pretty sure you'll be hearing from them shortly. Bless you and your family.
Posted 8/12/2011 10:06 PM (GMT 0)
Thanks Clocknut. I hope you keep on at your son to get tested. I will be urging my son to get tested from 30-35. You just never know and with his dad being so bad I hope he listens!
Posted 8/12/2011 10:35 PM (GMT 0)
i hope the trial has good results and that 12 months turns to many more. it's a lousy diagnosis at any age, but to be so advanced at such a young age. as you can see from my own age, i too was diagnosed young and have felt fortunate that it was found. it pains me to hear of someone my own age who was not so lucky. i will keep you in my thoughts and hope for some good news from this trial.
Posted 8/12/2011 10:46 PM (GMT 0)
karen,

welcome to HW, sorry you need to be here under such severe circumstances.

i give you my hope and prayers, both to you and your husband gavin.

please stay in touch with us now, we are here for you.

david in sc
Posted 8/12/2011 11:02 PM (GMT 0)
Possbile positive news on 'Cabby' (Jevtana)  it outperformed taxotere and mitoxitrone I think the abstract read. It also did work on patients whom already previously failed taxotere...how long is always the next question in PCa. You can go to www.paactusa.org and click on newsletters and read them, they had an article on the abstract info or such from this chemo...worth your while to find which issue....likely  early 2011 area. Great info anyway and now F-R-E-E- via web useage. Rick Profitt is the man whom runs this for patients, he is nominated for the Harry Pinchot Award this year. :-)


 

Post Edited (zufus) : 8/12/2011 7:03:08 PM (GMT-6)

Posted 8/13/2011 12:20 AM (GMT 0)
I am sorry I can not answer your question, but wanted to send you and your husband best wishes.
Posted 8/13/2011 1:39 AM (GMT 0)
Snoopy and Gavin: know that I will be praying for the 2 of you and your children. I have a 34 year old son and he has a base line PSA from his last physical when he discussed they family history of PCa in our family.

I wish I could answer your questions bout the new drug but I just have no knowledge of it.

Cajun Jeff
Posted 8/13/2011 1:45 AM (GMT 0)
Karen,

I have no words of wisdom to offer, but please know that you, Gavin, and your family will be in my heart, thoughts, and prayers.

If you ever feel the need to vent, scream, or otherwise talk...please feel free to contact me. I am very new to all of this, and while I am learning quickly.... there is one thing I do know and that is how it feels to have one's world turned upside down.

Please stay in touch.
Angelle
Posted 8/13/2011 2:20 AM (GMT 0)
Snoopy, I'm sorry about Gavin's prognosis. No one likes to hear an end date even though we all have one. You and Gavin will be in my thoughts and prayers. I wish you both the best.
Posted 8/13/2011 2:56 AM (GMT 0)
It's especially difficult to hear of someone your husbands age facing such a struggle. And of course, you as well. My thoughts and prayers are also with both of you.
Posted 8/13/2011 11:42 AM (GMT 0)
Karen and Gavin you both will be in my prayers too. We are in an age were research and new treatments are being discovered every day and I pray that there is one for Gavin.  PC has been called the "Old Man's Disease" but the more I know about PC the more I see it hits the young harder and more aggressively. Gavin is so lucky to have you at his side and you will make a difference for him.

Terry

Posted 8/13/2011 7:01 PM (GMT 0)
I'm saying a prayer for Gavin and your family, Karen.

Stay positive, stay strong and fight with all you can. I really good friend of mine was given 12 months, and that was seven years ago! Every day is a gift.

sending a virtual hug!
Posted 8/13/2011 8:47 PM (GMT 0)
Best wishes to you and husband. I never realized how many men are effected with PC until my PSA started going up and got an eye opener.
Posted 8/14/2011 1:19 AM (GMT 0)
You are both involved in a pretty tough battle and my thoughts and best wishes go out to you both. Take note of Zufus' suggestion about visiting the "paactusa" site. You might also find it beneficial and gain some valuable information and insight on possible additional treatments by looking in on

www.hrpca.org/index.htm

a site run for and by those with hormone refractive prostate cancer. There are quite a few there with disease at the same stage (and worse) as your husband so don't lose hope. The course of this disease is so unpredictable so keep on battling.
My best wishes,
Bill
Posted 8/14/2011 9:49 AM (GMT 0)
Karen, I am so sorry Gavin has received this news.  There is some good suggestions for research and I hope you can learn more about the trial.  Your husband has been through so much already.  Prayers are coming your way as the journey continues.  Special hugs for your little one.  May Gavin have many more years to enjoy his children.

Aimzee

Posted 8/14/2011 11:51 AM (GMT 0)
Hi Karen,

I'm sad to hear about your husband. He is so lucky to have you with him.

I had one other thought about his cancer, especially because normal treatments have been so ineffective. There is a very aggressive and rare kind of prostate cancer called small cell carcinoma that needs to be treated differently than the more common adenocarcinoma. While it is unlikely that your doctors would have missed it, it is possible. A chromoganin-A test (CGA) is one way to find out.

I hope the trial works, or that some other of the newest treatments can yet bring this cancer into remission.

Nellie
Posted 8/15/2011 2:22 AM (GMT 0)
Karen, Gavin, as a fellow traveler I am truly shaken to read this news. It is heartbeaking, even to a mostly stranger. I say 'mostly' as, although this is your first post, none of us on the PCa journey are really strangers.

I do hope that now you've posted that you will continue to keep us up to date on how Gavin is doing.

Sheldon AKA Sleepless
Posted 8/15/2011 2:33 AM (GMT 0)
Karen, the drug u r talking about is also called jevtana they gave it to my husband after the taxatere he did not work for him he is now on mitoxitrone my husband is stage 4 rib hip and most of the spine are affected also u said good or bad u wanted to know well heres the thing it works on some and not on others thats the hardest part to accept the mitoxitrone is more of a pain killer then a chemo in mu opinion but his psa isnt rising as fast as it was I am not trying to be in sensitive just straight up like i wish our doctors would be with us i have had to do all the research on all the drugs and the pros and cons of each one ...I wish u and your husband the best of luck...
keep fighting today cuz tomorrow aint here yet:)
Chrissy
Posted 8/17/2011 9:42 PM (GMT 0)
 

Thanks so much everyone! We really appreciate the well wishes and prayers and we feel the same towards all of you!

Gavin will be having a CT & Bone scan in a week or so and I will let you know how that goes. He has not been on any treatment other than the zoladex and zometa for the last 2 to 3 months as they were waiting for him to start the trial and he was having radiation to his pelvis and sternum for pain. So we are expecting not too good results. We think that it was far too long without treatment as it is already in his liver (8 spots). What are your opinions on this?

I would also like to ask if there is anyone with any knowledge at all about anyone with it also in their liver. Would like to know what happens now, symptoms etc.

I have found an article on New Hope Against Inoperable Liver & Lung Cancers. It was about chemembolization and radiofrequency ablation and that it has had good results like 2-6yrs extended life. The procedures are not well known and are only done in Italy and the US. Anyone have any knowledge of this at all?

formyhusbandg9- Thanks for being so straight up with me and my thoughts are with you and your husband as well. It is so hard going through treatment after treatment and nothing works. Hoping & praying for all of us that something new and wonderful comes along. Gavin is also G9.

msworrywart- Thanks for the offer to vent, scream etc. I offer you the same. Anytime!!

Billymac- Thanks for the website.

njbmwgs- Thanks! Always nice to hear a good outcome.

Riviere- We have heard about the small cell carcinoma but haven't really checked up on it. We will do this next visit! Thanks.

Karen

Posted 8/17/2011 10:20 PM (GMT 0)
Karen

I'm just a few days over a month into my journey with PCa, I will tell you this HealingWell forum is a marvelous place. HW has helped me in so many ways.

While I cannot provide you any of the information you seek, I do strongly recommend you keep posting here so others can reach out to you in every way they can.

Best of all to you and yours

Bud
Posted 8/17/2011 10:23 PM (GMT 0)
Karen - my father's prostate cancer spread to his liver and lungs, before there was any evidence that it had spread to bone. (A bit of an unusual course -- one that is more common with some relatively rare variants of CaP than with the typical acinar adenocarcinoma). Eventually, it did spread to bone too. The liver mets did not cause him any pain. Indeed, he would not have known about them but for some scans that were done and a liver biopsy. The lung mets also did not cause him much if any pain. Eventually, that did cause some breathing difficulty, and he was put on oxygen to address that. Although he eventually passed away, I will say that he had some good quality time even after the mets were discovered -- he visited family, took some vacations, and pursued his other interests. When there was pain, he was given pain killers. I wish you and your family all the best. I hope you have as much, and as good quality, time together as possible.
Posted 8/17/2011 10:44 PM (GMT 0)
 

Radad- Thanks so much. I definitely intend to stay in touch. There is so many wonderful people on here and so much knowledge and info. I wish you well on your PC journey.

medved- I am sorry to hear about your father but thank you for sharing. I am a bit worried about the liver mets and I know everyone is different but it is good to hear how it effects others. I am glad it didn't give your father too much pain & trouble.

Karen

Posted 8/18/2011 7:03 AM (GMT 0)
Hi snoopy & Gavin so sorry to hear of your situation.I myself am 45 yrs of age with advanced pc so I have an idea of how Gavin must be feeling.I have looked long and hard at the drugs available to treat this horrible thing and I have personally short listed 2 drugs that I hope may become available as my forward treatment option.Firstly there is abireterone which as recently received approval for use.Secondly a drug called xl184 which is still in trials as showed some remarkable effects on skeletal metatises.This is just my choice and Gavin and yourself might not have come across these drugs so I've posted just incase it gives you another option.I hope you can both find the strength to keep positive and maybe one day soon the scientists will find us a cure.
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