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Stage 4 metastases pls help

Taghreed
Posts: 10
Joined: Jul 2009

Hi to all....

i'm so glad to join this iste, all of you are really heroes....u gave me a lot of hope...

My dad was just diagnosed with prostate cancer, stage 4 ,and its spread to the bones of the the axial and appendicular skeleton, he is 50 yrs old and having severe back pain. with psa 20.4 amd gleasons grade 8 (4+4)....we are asking many opinions for the treatment....
orchiectomy was adviced, but im not sure it he would handle it, and the hormore treatment also was adviced.

Im seeking help if anyone had orchiectomy and if it was helpful in this situation... actually im lost and i dont know what to expect....

Taghreed

jimbeam50
Posts: 47
Joined: Oct 2008

I know you must feel desperate about your father's situation so I thought I would tell you what my husband has been going through. He was diagnosed in May 2008 at age 58 with stage 4 metastased PC. His initial PSA was 5700 and his gleason score was 5+4=9 in all samples. His onologist did not recommend an orchiectomy, I think this is just their own personal view whether to do it or not because another man here in town went to another doctor and they did do the orchiectomy but his cancer had not left the prostate.

The urologist put my husband on a triple dose of casodex for one month and then reduced it to a single dose. My husband's also started receving a monthly Zometa IV for bone strenthing. His cancer was in all his long bones, legs, arms, spine. His PSA went down to 67 but started going up in November and reached 2000. Casodex stopped working and the ongolist started him on Ketconazole which did not work at all! At this time the urologist started him on another hormone nilutamide and he started having chemo treatment in Jan. 2009. His PSA went down to 250 but started going up again about six weeks ago so the onologist started him on a chemo pill estramustine as well as the taxotere. His last PSA was 350 down from 500. Everyone seems pleased with that.

The quality of my husband's life in good. He still does some farm work but he does more than he should, you need a lot of rest. His appetite is very good and they had to adjust his chemo treatment because he had gained weight. There is a good booklet put out by the ACS called treatment guidelines for patients with prostate cancer. It is very informative.

Don't panic there are many treatments available. Hope your father has a good urologist, my husband thinks his walks on water. Everyone treating my husband are really supportive and genuinely concerned with his well being.

Good luck.
Sheila

Taghreed
Posts: 10
Joined: Jul 2009

Sheila....i really appreciate your reply to my posts... i was waiting and waiting for someone to share with me his or her journey...

I thank God there are treatments, but i cant lie that I am down and so helpless.... its a shock to learn that a person you love is suffering.... anyhows, i wish all the good health for your husband and all the survivors of any desease....

i wish that we continue updating each other about our cases, its a huge step to deicide in which dr we must see coz i saw a lot of opinions, the treatment is the same, either hormone or orchiectomy....

all the best of health to your husband....

regards
Taghreed

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

I was 52 when diagnosed with stage 4, psa 24, gleason 9. I had onw shot of Lupron and 40 radiation treatments. I have survived over 5 years now. Orchiectomy could be helpful but attitude and getting the stress out of life helps even more. Do not let the cancer control his life and if let him alone decide what the right thing to do is. Treatment is not for everyone. Life expectancy is marginally increased with stage 4 with any treatment, and a cure is not going to happen. These are the facts and the sooner one knows this the easier it is to go on and live the best way you know how. All the Best

jnetc
Posts: 19
Joined: Jul 2009

I am having hard time with Staging.. is it in your bones? my Husband has it in pelvic lyphnodes.. not sure about anywhere else.. will be scanned again in Aug.. Some sites say stage 4 other stage 3.. The treatment plan my husband is on seems to be consistant with stage 4

grlinfl
Posts: 9
Joined: Jun 2009

My husband was diagnosed at age 53. Stage 4, 4+5 gleason. PSA 76. Bone mets to spine and femur, some ribs. His first round of treatment was daily Casodex and 4 month Lupron injections. That worked for appx. 1 year. Then they started him on Chemo, Sutent with Predisone. Both of these treatments brought his PSA down, with the lowest being 7.6 with the Chemo. He didn't have severe side affects from either of these treatments. Fatigue, loss of appetite, weight gain, some numbness in toes and fingers. He was working full time during all of this. After the Chemo stopped working, they took him off of everything for apprx. 2 months, and then started him on a clinical trial drug. He is seen at MD Anderson in Houston. He started it last June, and his numbers have fallen every month. He is now at 4.5. He takes four pills daily. No real side affects except extremely tired. He handles the pain somewhat with pain meds. He is trying to work, but that is becoming harder to do. He has a very stressful job, with long hours. Has tried to have his hours decreased, but that is not working out so well. If anyone else reading this has had any luck with social security disability, please let me know.
Good luck to your husband, and please contact me if you need to.

Kentr
Posts: 111
Joined: May 2009

"If anyone else reading this has had any luck with social security disability, please let me know."

Social Security can be a real pain in the neck. They usually deny the first application so file an appeal immediately after being denied. If they deny you a second time, you may want to seek the services of an attorney. The fact that he's going through all this AND is in a high stress job with long hours tends to indicate (at least to me) that he stands a pretty good chance of receiving his disability. It's not clear to me that you have already filed so, with that in mind, file NOW and get the ball rolling.

Best of luck to both of you!

jimbeam50
Posts: 47
Joined: Oct 2008

My husband started receiving Social Security disability benefits retroactive to Jan. 1, 2009. It took only three weeks for the whole process. I am sorry to tell you but the problem may be because your husband is still working. You have to be out of work for six months before you are eligible. I know it's a bad situation, he is working to support the family but he is also too sick to continue. How can someone wait six months without inncome to be eligible? Sheila

grlinfl
Posts: 9
Joined: Jun 2009

You have to be not working for six months before you can file?

grlinfl
Posts: 9
Joined: Jun 2009

We haven't filed yet. Have been trying to figure how to survive while we wait and wait and wait, as we have heard it is a long time before they approve you. I do work, but it is not enough to cover all our monthly expenses with having to pay for COBRA and medications!!! We have a teenage son, that we need to take care of also. We live a very modest life- no frills at all! How can they actually think people can survive while we wait for them to determine if we qualify to get the money we work for all these years. My husband doesn't need this extra stress of trying to find a way to feed his family. I think it would almost make him give up, and quit treatment. They almost force you to do the worse, then maybe "they" will give you something. Sorry, if I seem to be to angry, but it makes me very upset to see someone you love, force himself out of bed in the morning to go do a job, and come home at night, go straight to bed and do it all over again the next day, just because someone who sits at a computer and reads doctors notes determines what happens to your life. I just had to vent!!

jimbeam50
Posts: 47
Joined: Oct 2008

I know it's a terrible situation. If you haven't already, go to www.socialsecurity.gov and check on the eligibility requirements. My husband became disabled in May of 2008 and began soc. sec. on Jan, 2009.

grlinfl
Posts: 9
Joined: Jun 2009

What is your husbands diagnosis? I have read conflicting answers to the qualifications for SSD. Yes, my husband can get to work, but only with the help of A LOT of pain medications, which in turn, puts him a state of "lupiness", and extreme fatigue. If he didn't take them, he wouldn't be able to move. How much did you have to prove? Maybe I can get one of those SS people to follow him around on a daily basis-LOL. Thanks for all the help in here, it is making it somewhat better for me to cope.

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

My wife fought with SSI for about 8 years before they approved her. When they came the first time to the hospital, they told us to run out the state disability it would pay more and when that is out then file. When we did that they said they had no record of them coming to us before. So the fight started, one hearing after the other, re-file after every time. But we did get a hearing before a judge and he made it retro active back to the very beginning. You should have an easier time, but the Gov't can move slow. Have you put him on your state disability? Your Dr should be able to do that.
Jim

grlinfl
Posts: 9
Joined: Jun 2009

I don't believe we have state disability in Texas. But I will certainly look into it. Thanks for the tip.

jimbeam50
Posts: 47
Joined: Oct 2008

I think we just lucked out. It seems like most people are denied their first time around. My husband has advanced prostate cancer with metatatic cancer to the bone. They ask you if the illness will result in his death which would be yes since advanced is another word for terminal. You sign medical release forms for your doctors. My husband's doctors must have been right on the ball because it only took three weeks for a decision. Talk to your doctors, ask their opinion. Do they feel he should not be working. SS will base their decision on their opinion. My husband asked his doctor how much should he be doing and she said walk around about half an hour a day! It's the fatigue and the pain, most of the time his red blood cell count is usually below 9 and he needs a blood transfusion about every three weeks. Check at the cancer center you go to. Ours has a social worker who knows all the angles. Maybe where you go they will have someone who can help you with the state disability question and the social security issue. Maybe you can get help from one source until you are eligible for the SS. That's what they are there for to help their patients.

Taghreed
Posts: 10
Joined: Jul 2009

it seems that we are all facing the same prbm, except that I'm not from America. My father works in the gulf where he has insurance, but though, it didnt coveer his medical tests and hospital bills ( he had sever bleeding due to biopsy and was admitted to ICU for a week)....unfortunaltey, we want to bring him next to us, so that we can follow up his situation and treatment, here in lebanon, his insurance doesnt cover his medications. we are searching for drs who agree to take his case on ministry of health account, im lucky some drs still are humane, today he will arrive to Lebanon, and tomorrow begins our journey.... I pray to god that it would be a long journey...............
Good luck to allll

rickyd2000
Posts: 1
Joined: Jul 2009

I would like to share my journey about living with stage 4 prostate cancer. I was diagnosed in July of 06 stage 4 prostate cancer at age of 56 with a Gleason score of 8. At that time my PSA was 90.1, so my treatment started with 50mg of Casodex 2x a day and a Lupron shot every 3 months. The side effects are of course hot flashes and some weight gain, some fatigue, but other than that I felt pretty good and kept exercising and reading my Bible daily. I am so thankful to the Lord Jesus for keeping me here. Well my PSA started to drop within 6 months and by the first year it was 0.16 and I was able to stop the casodex. I get a bone scan every 6 months and no new mets. I am still taking lupron and my PSA is 0.21 as of June 09. I will be getting my next PSA test and shot in August. I exercise 4 to 5 days a week for about 1 hour and still feel normal, but I do get fatigued in the evening. I take one day at a time and enjoy the time I have with family and friends.

Taghreed
Posts: 10
Joined: Jul 2009

hi ricky
thanks for sharing your journey with us, u really gave me hope regarding my father situation. Actually, we just knew yesterday that he had a pathaligic fracture in D12, and this upseted us a lot. we are going ahead one step, then we feel going back 10....

his dr put him on casadox 150 , then he will start his shots around a week or so....
i hope his fracture wont give us a hard time..........i'm right now waiting for the drs reply regarding his fracture.

i wish you all great health and hope to stay in touch and share info that might be useful to all of us.

Amy41
Posts: 14
Joined: Jul 2009

Take a deep breath - its all too overwhelming to start with. Its not a good prognosis but everybody responds differenty to treatment - you may get lucky and your Dad will respond well to the Hormone Therapy.

My 50 YO husband was diagnosed last August with a PSA of 750 - have been through hormone therapy which he failed and are now on Chemo which is also not looking like its doing the job of pausing the cancer.

Taghreed
Posts: 10
Joined: Jul 2009

Amy....
so sorry to hear abt your husband, and I pray for him and all the patients to respond and defeat this desease.

yep, i guess it is too overwhelming, yesterday he had his first treatment, and i wish he would respond....he's trying to share with us all the good times, and he wont say a word even if he was in pain thinking that he might spoil our time, we try hardly to keep him away from thinking about the future, except in hope, and to distract him when we see he's down and sad.

I guess we should all stick to our faith and search for hope...

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