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metastatic prostate cancer and bones, high psa

debjab51034
Posts: 8
Joined: Oct 2008

My husband was diagnosed in March 2007 with metastatic prostate cancer. It had already spread to the hip and pelvic regions. He was given Zometa and Lupron and for a short while Casadex. His psa started at 67 and came down to 27 and started to go up rapidly in January 2009. He was diagnosed with cancer in his femur last June. He started having pain in his right leg several months ago and last week an MRI showed cancer in the knee, fibula and ankle.He is taking two weeks of radiation and the doctor has asked him four times to consider chemo and he refuses. The doctor said the cancer is spreading rapidly and the psa is now 330. My question is how will this progress? I understand that the radiation is only for the pain. He is on Oxycodone and will still get Zometa and Lupron. How will this progress, more bone pain? The doctor acts like he is afraid to tell him any bad news and I never get to talk to the doctor by myself. Isn't there something else that can be done? I can tell he is getting worse, has lost 30 lbs. Will appreciate any advice. Thanks Squirt

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Keep as much stress out of his life as possible. The doctors would tell you if there was any other treatments besides the ones you are using and chemo. I have the same condition and am facing these same issues every day.

debjab51034
Posts: 8
Joined: Oct 2008

Thanks for the reply, so sorry you have this problem also. We have gone every month to the cancer center since March 2007 but have had more good months than bad until recently. He stays positive that he will whip this thing and the doctors are amazed at his outlook. I don't think they have seen a "workaholic" before, and they do not disagree with anything he wants except last month my husband told the doctor he wanted his testicles removed and the doctor said "I will make the call for you but I don't recommend it" and got up and left the room. We had to cancel this appt when the cancer was found the next week and take care ot that problem first. I feel so frustrated that there is not more for prostate cancer that has escaped the capsule. I wish it could all be caught early. You will be in my prayers, I wish the best for you! Thansk again

jimbeam50
Posts: 47
Joined: Oct 2008

My husband is in the same situation as yours. Was diagnosed May 2008 and with metastased cancer in all his long bones, legs, arms and spine. My husband also lost considerable weight and was in continous pain. He started chemo the end of January 2009 and actually looks forward to his treatment. He was lucky not to have many side effects such as nausea but has problems with his blood counts. He is eating very good and gained all his lost weight and then some! He also takes predisone along with the Taxotere chemo treatment and this helps with his appetite. My husband also has a high PSA, it is currently 255. He is very tired and tries to do some work around the farm but I wish he would just sit and relax. He asked his onogolist how much exercise should he be doing and she said about a half hour a day walking around not cutting fire wood! Good luck. I know when my husband isn't feeling well neither am I. Sheila

debjab51034
Posts: 8
Joined: Oct 2008

Thanks Sheila for responding. The chemo sounds good to me, just wish my hubby would consider it. We did go to the doctor recommended and we talked but he said it would only buy 6 to 9 months time and he would have nausea so hubby declined. Our doctor keeps asking him to try chemo but he declines. Today the doctor told him to stay off his leg as the bones are ready to break but I don't think he is going to pay much attention, he has a walker and a wheelchair but seldom uses them. He is feeling much better after only 5 radiation treatments. No pain but does have a lot of swelling. Good luck to you and your husband. It helps to talk about this cancer I think.

debjab51034
Posts: 8
Joined: Oct 2008

Sheila, was wondering how your husband is doing with his chemo. We were at the cancer center yesterday, my husband got Lupron and Zometa. We go every month for the Zometa and every four months for Lupron. The Lupron stopped working in Feb. His PSA is now at 470. The doctor mentioned trying Liquid Radiation yesterday and I looked that up on the Internet. Not sure what it is called. Today has been a really rough day but hubby believes it is from the Lupron shot. He has felt bad before but not anything like today, in a lot of pain and on Oxycodone. Still won't discuss taking Chemo. Some days he is ready to just give up but has decided now to have castration. Two doctors have told him it will not help but he knows two men who have had it and it did help. So I just support him, I am worried sick but this is what he wants to do and will have this done on the 29th. I pray every night for a cure for this disease, It seems like there is not much to offer once it is out of the capsule. Good Luck to you and yours. Jo Ann

jimbeam50
Posts: 47
Joined: Oct 2008

Hi JoAnn,

My husband just had another chemo treatment Thursday, I think this is his fifth or sixth. Still is not experiencing any nausea with his treatment but he gets a anti-nausea IV before his treatment and takes ondansetron for four days after treatment to prevent nausea. SO far so good. He told the nurse he felt like superman when he gets his treatment! SHe said she never heard that before so maybe he's just an unusual case. His PSA has been going up, his last test this week was 450, so I quess the chemo has become less effective. His onologist started him on a chemo pill too, estramustine, which he just started taking Thursday. You take it three times a day for five days. He has a little stomach upset but not bad enough to stop him from eating. His pain is the worse thing for me to deal with and sometimes he has a really bad day. As far as the castration goes my husband has mentioned it but his urologist has not recommended it. My husband is taking nilutamide tablets prescribed by his urologist which is another hormone pill. I was just reading on the information sheet that these pills should be used in combination with surgical castration for treatment of metastatic prostate cancer so I quess we better ask the doctor about this.

I can't believe all of this is happening. If I stop to think about what is possibly down the road for us I can not breathe. I am thankful for each day.

Stay strong.
Sheila

debjab51034
Posts: 8
Joined: Oct 2008

We had just one bad day after the Lupron so that is good news. My husband worked four hours today helping in the pecan orchard. We had a bad storm a week ago and lucky the only damage was broken limbs. He is staying positive and looking forward to getting the surgery on the 29th. But not telling our children, not sure why except they probably would think the doctor should recommend it and not wanting them to worry. He is 76 and has always been in perfect health. This will be his first surgery ever. My email is ibailey@valornet.com if you want to email me. I hope things are going well for your husband. Their PSA's are about the same. Stay in touch. Jo Ann

Hal9000
Posts: 1
Joined: Oct 2013

I'm in the same boat as your husband, PSA went up and I on the Zometa, and Lupron Tx and the Casidex, a posibilty of Chemo if my PSA dosen't go down along with other meds my question to you is while on Chemo well you still get the Zometa and Lupron L'm waiting on my labs to find out whats next, fighting the good fight anything you can tell me would be useful and how long does the Chemo infusion take

mrspjd
Posts: 688
Joined: Apr 2010

Hi Hal & Welcome,

 
Sorry for your situation. As you may have noticed, this is an older inactive thread. Debjab and a few others haven't posted here for a while. In the 4 yrs since this thread was created, many new 2nd line ADT drugs, immunosuppressant, chemo & other types of advanced drugs have been FDA approved for metastatic castration-resistant prostate cancer  (mCRPC=progression of disease with serum testosterone controlled below castrate level). You may wish to Google some brand/trade names including: Zytiga (abiraterone), Enzalutimide, Xofigo, Xgeva, Provenge, Taxotere (docetaxel) & Cabazitaxel. Medical opinions re different drug combinations & sequencing protocols may vary case by case & should be discussed at length with a world class expert in PCa oncology as pertains to your specific mCRPC case.  Other drugs are in various stages of clinical trials for future FDA approval. If interested, see: clinicaltrials.gov  
 
Also, newer imaging modalities such as C-11 Choline and F-18 Na (sodium) fused PET/CT may show soft tissue and bone mets where conventional imaging tests have previously failed to do so. Drugs like Xgeva, Xofigo and/or focal RT for tumor mets may be viable palliative tx options for mPCa cases. 
 
You may wish to start a new thread on this subject (discussion topic) as it might generate timely replies to your questions. In addition, a long time member of this forum recently suggested checking/posting on another more active/informative PCa forum: 
http://www.healingwell.com/community/default.aspx?f=35  The men & women on the HW PCa site (with the benefit of forum moderators & an efficient search feature) can be another good PCa resource for lay opinions & feedback. I recommend checking out the PCa organization "US TOO." It offers established face to face PCa networking meeting groups in hundreds of locations across the USA (and internationally). After my husband was dx'd in Feb 2010, the info/resources that their knowledgeable members provided to us was invaluable. Almost 4 yrs later, we continue to participate in the group mtgs. To locate a grp in your area, follow this link:
 
If you're a sci fi fan as your screen name seems to indicate, then you might appreciate this quote from the infamous 2001 sci fi antagonist (as relates now to PCa): "I am putting myself to the fullest possible use, which is all I think that any conscious entity can ever hope to do." ~HAL9000
 
Best of luck on your journey. 
 
mrs pjd
Wife of a T3 stage PCa Survivor

 

grlinfl
Posts: 9
Joined: Jun 2009

My husband was diagnosed in June 06, with mets to his spine, ribs, and femur. PSA 79. He started on hormones. That stopped working about 1 year later, then started on Chemo. He did great on it, considering. He hardly had any really bad side effects. He did lose his appetite, and had some toe nail issues. But he worked 50 hours a week, did not lose weight, in fact he gain weight. Probably because of steroids. The chemo stopped worked appx. in March of last year. But some of his tumors are gone, the only ones left are in his spine! He then entered into a trial drug of Abiraterone and Prednisone. When his chemo stopped working, his PSA had risen back up to 17. He has been on the trial drug since last June, and his PSA is 4.5!!!! This is fantastic news. He feels great, except for a little fatigue, but he is still working a full time job. You need to explore all options, this is not a death sentence if you keep positive and keep the faith. The alternative is not a good one as my husband and I say!

debjab51034
Posts: 8
Joined: Oct 2008

Hi, thanks for the reply and encouragement. My husband's PSA has been very high since 1994, starting at 23 and staying between 40 and 50 for twelve years. He chose the wait and see and it got him in trouble. Didn't want surgery, very stubborn! Yey, it was his life and he only got angry at me if I mentioned going to the doctor. He would rather fish which we did a lot of for many years! When he finally went to check symptoms with the urologist (excess urination) it was out of the capsule and his pelvic broken and hip fractured (2007) He has had treatment for two years every month. Zometa, Casodex and Lupron every 4 months. Choosing not to take chemo as the promise of a longer life was only 6 months and he didn't want to be fatigued. He is 76 and getting tired of the fight. Your husband is probably a lot younger, we don't qualify for a trial. The doctor did mention liquid radiation in 4 months. Not sure what that will entail. I think there should be more information out there for the younger men, get your PSA early even tho it is not perfect. I read of so many 39 and 40's having the advanced type and leaving young children. My husband has two younger brothers who have had the surgery and are doing well for several years. We do keep the faith, my husband is a deacon, many are praying for him and that I think is why he is still with us. Good luck and thanks again Jo Ann

billydeetwo
Posts: 2
Joined: Jun 2009

Talk to the Doctor!! you should be totally aware of what he thinks and what he is prescribing. My wife attends every meeting, and has her list of questions. There is a very good book, "The Power of Two" by Brian and Gerry Monaghan. Brian had an inoperable brain cancer, and Gerri acted as his surrogate. In the book she details the responsibilities of an advocate. Not easy, but it needs doing.

best of luck in your ongoing battle.

debjab51034
Posts: 8
Joined: Oct 2008

I go to every visit, have for over two years now. My husband is hard of hearing so sometimes he looks at me to answer the doctor. We have had the same doctor for the entire time, the doctor thinks my husband is amazing, being able to work most every day and loveing it. But the only time I told the doctor about a problem, my husband got angry and told me I could not go with him again! Of course he forgot by the next month and was glad for me to go. But he usually cautions me "not to tell the doctor anything". He is in denial I am sure as he usually tells the docot "he is doing fine". He has surgical castration in the morning and told me not to tell the oncologist, he wil hopefully tell him in two weeks when we go for the visit with oncologist. The surgeon wrote on admission slip "castration highly unlikely to help", both the oncologist and urologist have said the same thing but husband wants it anyway. He says this is his last effort. Still not agreable to chemo. Thanks for the advice and I will look for this book. Hang in there, there is hope around the corner or so our oncologist tells us.

p9p5p5p1
Posts: 1
Joined: Feb 2010

I was diagnosed with metastatic prostate cancer in April, 2009, at age 62. My PSA was an incredible 2380! Both of my shoulders were in a great deal of pain, and I had to have surgery on both of them because they were so fragile. My doctor put me on Lupron, Casodex, and Zometa, and my wife put me on a mostly vegetarian / raw foods diet, as well as an extensive list of supplements. She got her initial ideas from a book titled "Life over Cancer" by Keith Block, MD. It is now February, 2010 and I feel wonderful. My PSA is down to 9.8, and I am virtually pain free. I stopped taking pain medications several months ago. Please check out this book and follow the guidelines. Our bodies can heal themselves; they just need the right fuel. Best of luck!

Trew
Posts: 891
Joined: Jan 2010

It is always uplifting to read stories like yours.

I do wish you well, as I do for all the others posting on topic.

Mitch128
Posts: 20
Joined: Oct 2009

p9p5p5p1 - This is a very uplifting post. Thanks so much.

"my wife put me on a mostly vegetarian / raw foods diet, as well as an extensive list of supplements"

Would kindly you share the "extensive list" with me (and others)?

BTW, for those interested, "Life over Cancer" by Keith I. Block, MD. is reasonably priced at $16.50 here:

http://www.amazon.com/Life-Over-Cancer-Integrative-Treatment/dp/0553801147

Mitch

aykt36
Posts: 28
Joined: Jun 2010

thanks

wolf
Posts: 7
Joined: Apr 2002

Hi Melle,
You may want to read the story of a patient who had a PSA of 420 and bone metastases at: http://www.protonbob.com/testimonials/testimonial40.asp
I had the same treatment in 1994 (my PSA on initial diagnosis was 101.6) and my PSA 2 weeks ago was 0.3 - absolutely no side effects.

Wolf

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