Are We On The Right Path?

Hello. My Dad is currently fighting prostate cancer. I have done a good bit of reading on the subject but it looks like the knowledge contained in this site trumps most all other sites I have visited.

Dad turned 60 in November 2011. He was having some symptoms, but ignored them. Shortly after his birthday though he started having very bad lower back pain and was feeling drained.

We had been worried about him because of uncontrolled diabetes and high blood pressure for a while. He'd refused to see the doctor period, until it hurt him to move around. They ran several test, including the PSA. Everything else, while important, was small beans when the PSA came back at about 450.

Shortly there after he had the digital exam which confirmed lumps, then a biopsy. His Gleason score is 9.

In December he had an MRI and a bone scan done. I live a state away, but was able to set in on the consult with the urologist with Mom and Dad. The bone scan was bad. The cancer had spread to his upper legs, pelvis, spine and most all ribs. The MRI however was excellent. No signs of cancer in the liver, lungs, lymph nodes, etc. The urologist say, "You're going to die one day, but not from this".

The urologist did not recommend surgery because the cancer had spread so widely. He was started on hormone treatment the following week. He also did not suggest chemo at the time. He was of the opinion that it only prolonged life temporarily, and in Dad's case it was not needed.

My Mom (a retired nurse) thought the situation was very bad. Personally I was overjoyed that it was not in his organs. I figured at the time this would be something that though it would not be cured, it could be lived with.

Dad continued to live "normally" till about a month ago. The leg pain got to the point where he went on short term disability and began radiation. This time though he was seeing an oncologist.

The radiation knocked him way down. He had bad fatigue, but the pain went away. At the same time as the radiation was going on, his blood count started dropping. He had his first blood transfusion, and finished the radiation.

Last week he decided to drive on a 4 hr trip to the casinos, alone. He said he hit is limit while trying to move around at the casino. A couple days later he drove himself to the dentist. Later that day Mom heard someone shouting outside and found him sitting in the car. He was not able to get out.

The past two days he has stayed in bed most of the day. Speaking with him on the phone is painful. He is bad about getting depressed, which I keep trying to be supportive and keep him cheered up. But he is hurting bad now, and I can hear it in his voice. He does have pain medication, but has avoided using it so far.

His PSA is still +400. The oncologist is now discussing chemotherapy.

So that is pretty much the story. These are my questions.

Should surgery be considered at all to remove the prostate?
Does chemotherapy stand a fighting chance?
Will the pain continue to get worst or will it come and go?
We know he did not just develop this. His cancer has been with us for a couple of years or longer. The five year survival number is about 30%. I personally consider that to be odds worth fighting for, but his pain has really hurt my faith that it is going to come out alright. While I don't expect this to be easy, can he make it out of this with out a miracle? Most surely people with far worse have lived to tell about it.

Also wanted to mention another excellent place - YANA - YOU ARE NOT ALONE NOW
www.yananow.org

Come here first with all your questions and pass on all the info you can, and use YANA as a additional source

robertcool

Not sure where you are coming up with "Chemo is not regarded as highly effective". I have a couple of papers on my home computer that talk about the various chemo, when I get home will see if I can put the info here.

Bud

Checkout this too: (also mentioned above is website www.yananow.net )

Here's the name of the Expanded Access Trial - opening Soon:
Radium-223 Chloride (Alpharadin) in Castration-Resistant (Hormone-Refractory) Prostate Cancer Patients With Bone Metastases
LINK: http://www.clinicaltrials.gov/ct2/show/NCT01516762?term=alpharadin&recr=open&rank=2


Contacts



Contact: Bayer Clinical Trials Contact


[email protected]

(other things to look at see www.hrpca.org  proven treatments tab)  Leukine drug combos might be a choice too, used by Dr. Scholz and Myers

Find another onco-doc for further opinions and best yet try Dr. Scholz, Myers, Vogelzang, Sartor, etc.

Post Edited (zufus) : 4/8/2012 1:19:39 PM (GMT-6)

Hi Frontier,

I'm sorry to hear about your father. I don't think he was well served by his urologist. To tell a person who has Gleason 9, with wide-spread bone mets and a PSA of 400 that they're not going to die of this is optimism to the point of foolishness. Sadly, Gleason 9 folks with widespread mets are precisely the ones most likely to die from it. For them this is a very deadly disease -- fast spreading, virulent, and quick to become hormone resistant. Instead of trying to provide silly reassurance, the urologist should have brought in the heavy guns. Not to say that they would have provided a cure, considering the seriousness of your father's condition, but they may have knocked it back a little.

At this point, it appears that your father may be hormone-resistant. But some of the treatments mentioned above might give some hope, and definitely some relief. At this point, you went to find the best medical oncologist you can to try to get more advanced treatments started. A medical oncologist experienced with prostate cancer should be able to give you a more realistic picture of your father's prognosis, and quickly get him treatments that might help.

Best wishes,
Nellie

Frontier02,

You may not be logging in again to see these messages. Anyway, I have prayed for you and your father and relief of his pain. Please know that in the years to come you will remember this experience, be proud of the support you gave your family, and realize that your presence for you father was such a blessing to him. I have been through very similar terminal situations twice in the past four years and know it to be true. Your dad will still need support through his chosen path, then your mom will need your help--but please remember to take care of yourself, as well.

Bobbie

Guys, I can not tell you how excited I currently am. We have just had a 180 degree change in direction.

I put in for FMLA at work today to come back home and help my Mom with Dad since we were suppose to be bringing him home for Hospice to take over. Even though we disagreed pretty strongly with him over it, we said it was his decision. All we needed was for the Dr to come in and discharge him.

The Doctor arrived and said he was more than glad to follow my Father's wishes, but he wanted him to think about a few things first.

1) He is only 60
2) The loss of blood is from an ulcer, this is fixable
3) He has regained control of his legs, even though he can not walk right NOW, in time he will get this back.
4) Even though he has prostate cancer, and it has metastasized to his bones, it is still prostate cancer and there are many more treatments than simply the first hormone treatment we attempted.

He looked at the Doctor and said, "So you think I NEED TO go though with the surgery?" And the Doctor say "Yes." Everything the Doctor told Dad, both Mom and I had told him. We just did not have the authority, or he did not have the clarity to accept it.

He is going into surgery for the ulcer this evening.

Dad does have some serious emotional issues which will still need to be handled, and they have a hard road ahead. At this point though, Dad is alive and we are going to continue fighting the cancer!

PS to Gleason 6, I am his son =)

wow - that is good news.

Glad you had a good doctor that could explain it to him.

Hope the surgery goes well.

I am very sad to say that Dad's fight is over.

After deciding to have another GI inspection, his vital signs began dropping rapidly. The doctors postponed the inspection to the following morning. Once he was stable, they were able to locate and clap off the artery within his stomach that was bleeding. They continued giving him blood and fluids and he was looking better and better. He had a slight case of pneumonia in the lower part of a lung but he was given antibiotics which we believe got that under control.

We figured he had a couple more days in the hospital, then would be transferred back to rehab to work towards walking again. At this point I headed back to Georgia.

Two days later, while Mom was out to lunch, he began having congestive heart failure. When she returned he was on a breathing machine. His first chest X-rays were a mess. They were able to bring him off the machine after a day. They thought the heart failure was under control.

On Monday May 14 he was setting up in his bed feeding himself and for the first time in several weeks was very talkative with the nurses. They said he got very quite, and then within a minute he just slipped out of this world.

My Mother, Sister, and I set up the final arrangements, and Wednesday afternoon we laid him to rest.

By all reason there is no way he should have survived from the previous week with the hemoglobin score at 3. Even though he was on good terms with me and everyone he knew, I truly believe we were gifted one extra week with him, to which I am so thankful. It gave a lot of family and old friends a last chance to see him. I have an uncle in his 80's who is at about 5 years with prostate cancer metastasized to his bones, and a cousin in his 50's with colon cancer his numbers go up and down but he looks to be doing well. Both of them visiting gave my Dad a lot of hope. I did all I could to build up his confidence that he still had many good years left.

All of it together seemed to help relieve his depression and anxiety. With the blood loss, we had several conversations that were loopy, but I will carry with him forever. Initially he described his situation literally as being down a rabbit hole in the dark. The day before he passed he told one uncle how brilliant the lights were in the rabbit hole. In the end, I think he died happily.

God, I know I am preaching to the quire here, but if there was only one lesson I wish people would take from our story, it is get checked out regularly. None of us are guaranteed a tomorrow, much less another breath. What if's are pointless now, but his story did not have to end like this. I had begged him to go to the doctor for years. Mom found some blood work last month from February 2011 where his PSA was 10! He only looked at his cholesterol, didn't show it to her, then filed the paper away. Please educate your children, relatives, friends, and anyone else who will listen.

Please take care of yourselves. My thoughts and prayers are with you all. Thank you all so much.

Post Edited (Frontier02) : 5/19/2012 8:13:49 PM (GMT-6)

Frontier02

In the end, I think he died happily. - That is all we can ask for of the end, you did all you could and filled your Dad's life with joy.

Our condolences and prayers go out to you and yours.

May your father rest in peace.

Hugs

Mr Bud and Mrs Bud

So sorry for you loss, you and your family will be in my prayers.