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rob's new psa and chemo

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Posted 1/30/2008 7:04 PM (GMT 0)
sad   mad confused Hi people: Well yesterday's meeting with chemo oncologist did not go well. Rob's psa is now 735, up from 439 in Nov. He has also dropped 10 lbs. in the last 3 weeks. I'm hoping that this is due to the week he did nothing but sleep. His appetite has dropped this last week and he is still in pain in his lower back and now he feels it in his upper thighs. Dr. says that he should start chemo now since the hormone therapy isn't working. We have finally agreed to do. He will start Rob on a low dose of Docetaxel since his red blood cell count is still low. I suggested a transfusion but unless it drops below 100 doesn't want to risk getting an infection from transfusion (gee, I thought now these things were filtered and safe). I am so fed up with drs.  I went in with a list of things to ask: new hormone drugs like Xinlay which I have read great things about especially for men in Rob's case with bone mets.  He didn't seem to want to listen to this. I asked to have his testoterone and dihydrotestosterone (i think this is how it's spelled) checked as well as his calcitriol levels. He said that they were checked a yr. ago and hormone therapy would have kept this down. I got nowhere. Rob's pain level was adressed and he said for him to keep on the hydromorphine 2mg. every 2 hours. Found out that this 2mg. is the equivalent of 10mg. morphine. Try for another week regularly and then he will try something else. Well, rob has been taking this faithfully since yesterday and no relief. He goes for more bloodwork in 10 days to see where his red and white blood cell count is before increasing the doseage of chemo.  Right now he can't get up without my help and his muscles are weak (i'm asssuming that this is from lack of using them, hopefully). Dr. also said that obviously in his opinion the Zometa isn't working and has stopped that for now. He looked at Rob's ct scan from a yr. ago and went partly by this. Now, we had seen this chemo dr. last June and at that time said that his bones had improved some. I am soooo confused. It almost seems that because he wants chemo started he isn't interested in what else might be available for Rob in hormone therapy.  Pleaseeeeee, is there anyone out there who is in Rob's shoes as far as his psa count, a body that seems to fight everything tried and has dr. who don't seem to agree with each other on which way to go. We so desperately!!! need some insight as to what to do. I never did get an answer as to why the radiologist dr. took Rob off of Casodex when he started Avodart. when Rob was on Proscar he was also on secondary hormone therapy. Once he starts chemo can he then go back to hormone therapy after?  It seems that the only bright thing that dr. said was that you can't fight this disease and eat right when you'rre in pain so get the pain under control first. Trying, and next wk. i have appointment with family dr. and will get stronger pain meds for him. We don't understand why the morphine isn't working. He no longer has pain anywhere else. Oh yeah, when i tried to read info. about how Zometa sometimes can cause what Rob is having, that was brushed off. Dr. said that more likely it's from radiation, the fatigue, etc...  We are in no financial position to go south for more help (drs.). My EI runs out next wk. and I don't know how we will manage. Finding another job is hard enough but leaving him when he now has trouble walking and getting up is scary. Last thing we need is to have him fall. We live in the country and selling the house to move into town is not an option he will hear of. He is thinking of the future and we have only owned this hourse for 5 yrs. so we wouldn't get any extra for it and he says that since the house if paid for if anything happens he wants to make sure i have our home to stay in. I'm in panick mode especially since yesterday, don't know what to do anymore, I'm exhausted from crying, I can't bear to see this once strong and independant man in pain and losing everything he once had in body, spirit and soul.  Pleaseeee, I'm am feeling so desperate and at my end. If anyone out there has ever been here please help us. It's so hard to have hope and faith when alll your prayers and everything you try is failing. I'm on meds which right now don't seem to work to well. Also, asked dr. for antidepressant's for rob but he said that once his pain isunder control  he should be okay so again I'll ask my family dr. next wk. Sorry for rambilling, I'm just so darned scared. I just can't lose him. Even if I only get a few more yrs. with him, right now it feels like we are at the end.  lifeline
Posted 1/30/2008 8:09 PM (GMT 0)
Dear Lifeline,

People are trying to be supportive and loving. There is nothing left medicine has left to try. Rob's PSA continues to climb which is strongly associated with his increasing symptoms. How very much we wish we could just hold you both until you feel safe again. You will have to take our word for it when I say...we're holding on to prayer and thoughts for you both.

God Bless,
Vickie
Posted 1/30/2008 8:19 PM (GMT 0)
I wish I could offer more advice than this, but this will help. get a pencil and paper and organize your thoughts then make a action plan. If it falls through make another one. Call your state family services, and tell them your story to see if they can help. Ask doctors and hospital finical services what they can do. Don't be afraid to ask for help.

Randy
Posted 1/30/2008 8:27 PM (GMT 0)
Dear Lifeline & Rob, I hope you continue to read your previous threads... because there is so much strength coming to you in so many ways and from so many forum friends.  Few have traveled the path that you are on right now.  It is a path that we all know may be or could be in our future...  Please continue to reach out, continue to share your feelings, your concerns, and the steps in which you are taking on a day-to-day basis.  Buddy & I will continue to keep you close ~ and pray that today will be the day that you see a light at the end of the tunnel.  I hope and pray that our strength through our  warm thoughts   and gentle hugs will shed a little light.   Stay extra close....   In Friendship ~ Lee & Buddy
Posted 1/30/2008 8:45 PM (GMT 0)

Dear Lifeline,

Your situation breaks my heart.  You have endured so much and have held up strong and reached out to us with sincere pleas for help.  I only wish there was some good news for Rob's condition.  Please believe us that we have you in our thoughts and prayers.

Please stay with us...

Jim

Posted 1/30/2008 9:46 PM (GMT 0)
I wish I had some great information or magic solution that I could deliever for you. All I can add is what Randy said is to try and take a big breath and list out things to check into and form a plan to find as much help with services that may be availble to you. Hopefully there will be someone with more experience with this stage and will give you some good advice. You will and continue to be in my prayers for solutions, help and comfort.

Norskie
Posted 1/30/2008 11:30 PM (GMT 0)

Dear Lifeline

YOU RAMBLE ALL YOU NEED TO!  If it helps, we can read and understand your feelings.

You both will be in my prayers.

Posted 1/31/2008 1:25 AM (GMT 0)
lifeline-

Even I will be praying for you and Rob. If there's anything to this prayer thing, you two should be doing better soon, considering all the love, good wishes and prayers coming your way from the folks here.

-Les
Posted 1/31/2008 1:54 AM (GMT 0)
Lifeline,
I and everyone here for that matter, wish there was something we could say to make this easier for you & Rob. I can feel your pain and fear in your writing. Vickie speaks the truth to you. Rob's cancer is not responding to the hormone therapy any longer. Read Randy's post again...make some calls tomorrow. You need help with this situation and some real support. This may be a long shot but perhaps a call to your family doctor would lead to some suggestions. I'm sure given your situation, he would return your call. We have the America cancer Society here in the US, do you have the same in Canada? That might be an option. I'm just grabbing at straws here.

I certainly wish I was more help. Please keep posting. We care very much about you & Rob.

Susan
Posted 1/31/2008 8:35 PM (GMT 0)
Thank you everyone for your replies and endless support and prayers. I will press my family dr. for any more ideas when I see him on Monday. We also have an appointment with the oncologist up here who will be monitoring Rob when he starts chemo. I will ask him if there are any other things to try. I had printed out info from 2004 on advanced p.c. (a focus on therapies). It had a couple of things fairly new to try which they had good success with in dealing with men with advanced pc especially when bones were involved. One was the Xinlay i mentioned before. Unfortunately as I said, the chemo dr. didn't seem interested in it. I finally got Dr. Snuffy Myers book and read it front to back. I suggested some of the things he spoke about with different combos of drugs, even took the book with me. Got nowhere. When you read articles that are genuine and drs. push it off, I don't know if pushing the issue to try these drugs will do more harm than good, even when there is a fair amount of success. I guess I can just hope that starting the chemo Docetaxel will work. It's so frustrating as I'm sure some of you know when everything you ask the dr. isn't listened to. He is starting to get some relief from the morphine ( I guess it needed a couple of days to work) He hates taking the gravol before the pain meds since it makes him so tired. He is sick of lying down. I still don't know why the chemo dr. wouldn't do transfusion when his count is 106. We asked for one. Said iron supplements would take 3 wks. to work and that was the end of that. His ans. of not wanting to risk getting infection from transfusion doesn't sound right, not with the extra care they now take with blood. We have always loved the north for the bush and fresh air but this is one time I wished we lived further south in the big cities where there are more options of dr. to try if you aren't happy with the team you have. Gordy, I am trying to hold onto the belief that there is something to this prayer thing too, and that with all of the prayers coming to us, something will turn around if only for a few more years. My mother always said that god never gives us more than we can handle or bear. I'm really starting to wonder about this. She also said that if you have faith as a grain of mustard seed, nothing shall be impossible unto you. Boy, do I ever miss my mom. It's funny, you read of stories where men in the same situation as Rob or close to it have done a turn around when you didn't think it was possible and it gives you hope, than you listen to the dr. and it shoots your hope out the window. I have printed out stories to read so maybe I'll get my hope back. Anyway, I will sit down and plan my next strategy on paper and keep trying to fight. I will not lose my husband so soon. Thank you all sooo much for your help and prayers. You are all in mine. Gordy, again good luck with your tests and keep fighting, you are too strong not too. I'll keep you all updated. lifeline
Posted 1/31/2008 10:27 PM (GMT 0)

Lifeline,

I know that there is very little that any of us can say that can ease your pain. But please understand that even though that we have never met, you and Rob are family to all of us here. We will all pray because prayer works. I am going to put out a call today for my prayer warriors to start praying for you. We will also pray that your doctors will listen and do God's will. We love you both and always will.

Be blessed,

Walt (War Eagle)

Posted 1/31/2008 11:23 PM (GMT 0)
Lifeline,
You can do something else with your family doctor. Tell him you were not happy with the reply on the testosterone and dihydrotestosterone and have him do the test. He can be a second opinion on that. Also, the stopping of casodex was within protocol. Casodex can go from being an assistant to hormone therapy to morphing the cancer to use the casodex as an androgen receptor. That is not a good thing. I am not certain why he stopped the HT but I'm sure they are trying to help Rob. My prayers are for your's and Rob's comfort and your peace. May God be with you closely in these hard times.

Also, keep the faith, whether the prayers work here on earth or in heaven, they work.  When it becomes our time, it just does.  But you and Rob are not alone, you have us, and and you have your faith. 

Tony

Posted 2/1/2008 1:40 AM (GMT 0)
lifeline-

I can't tell you how many stories I've been told about how folks are alive 10 or 15 years after the docs gave them months to live. Just today, one of the guys in the next department to mine told me his wife was diagnosed with stage 4 breast cancer which had metastasized to her armpit and then her neck. Her prognosis was horrible. That was in 1991 and she's still doing fine today.

Don't give up. NEVER give up.

-Les
Posted 2/1/2008 2:59 AM (GMT 0)
Dear Lifeline

You story is heart breaking. I am not sure exactly where you live (it appears to be somewhere in Canada) or to what extent you have access to a top cancer treatment center (assuming that you do not already have such access).  What I find so absolutely distrubing about your situation is the doctor who is treating Rob for his prostate cancer.  He seems to have no compassion, nor is he willing to address your concerns and questions. 

While this may not be readily possible based on your personal circumstances, if you could get a 2nd opinion at a major respected cancer hospital which has an excellent track record in treating advanced stage prostate cancer, it might help your situation.  I have been unable to gather enough information from your many postings to fully understanding how good or bad the doctors and hospitals are where you live (i.e., are they expert enough to provide your husband with the best prostate cancer treatment available today)?

You have been given some good suggestions above (e.g., consulting with Rob's regular physician and telling him of your enormous concerns and frustrations about his cancer treatments, especially dealing with his cancer doctor; and accessing state and local social services to see what help you can get financially (especially for you husband's medical treatment) to carry you through. 

You should also confront the cancer doctor in a diplomatic way to tell him you don't understand why he won't answer your questions and give you a clear indication as to why the treatment he has prescribed for Rob is the only way to proceed right now and why some alternative treatments don't make sense.  When you suggest treatments that you have read about, the cancer doctor should indicate if he is aware of them and why he would reject them.  If confronting him still proves ineffective, perhaps you could approach top management in the hospital to present your case. 

You indicated that you and Rob will be consulting with a medical oncologist.  Is he a specialist in prostate cancer?  A top medical oncologist specialing in prostate cancer can usually be very helpful.  They should be very familiar with the latest drugs available to treat your husband, including any in a clinical stage.  What is the speciality of the doctor who is treating Rob's prostate cancer?  Perhaps a urologist?

Please don't give up hope, be stong as difficult as it may be, forge ahead and pursue any other options that may be available to you and Rob.  Don't leave any stone unturned.  My heart and prayers go out to you and your beloved husband Rob.  God Bless!

Dave

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