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need someone to be straight up im new and this is about my husband

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Posted 7/15/2011 3:20 AM (GMT 0)
first please excuse my spelling lol
my husband is stage 4 prostate cancer that has moved to the bone (metastatic prostate cancer) we have done the taxatier and had one dose of jevtana but his psa levels jumped 14 points they have now put him on mitoxantrone and have 3 weeks to wait and see if it works his gleason score is 9 and his psa levels 34.10 i feel like no one is being straight and i am not being told something we go to ctca and they seem very positive but my husband is not and i feel like im in the dark can any one help and tell me if we need to prepare for it to get worse. I know everyone is different but i just am so confused about what i should be doing please help me understand where we are at in this fight we r having ty for any help:)
Posted 7/15/2011 3:56 AM (GMT 0)
Welcome to the site, pleased you have found us, there are a lot of very knowledgeable guys here, whom I sure will chyme in shortly and attempt to help you with your questions. Please stay positive.
Posted 7/15/2011 4:10 AM (GMT 0)
Good Evening "formyhusband",

First of all I am sorry that you and your husband have to deal with prostate cancer. Secondly, you have come to the right place to find knowledge, information and support. I too have trouble with spelling so I will do my best. From what you have shared it seems that your husband has jumped into prostate cancer with both feet and is up to his knees from the start. To get all the benefit of the shared knowledge and experience from the individuals which have gone down this road before you, you might want to share a few more facts about your husband's situation.
Age
recent history of PSA's
Biopsy results
When was he first diagnosed
Maybe where you live

Others will be responding who have more knowledge than I have with stage 4 PC. There have been men here who have had success in fighting stage 4 PC and still have a pretty good quality of life. They will offer information which will help you gain the confidence you are needing to feel you are doing all that you can to help you husband. Be patient- in a short time they will respond. For tonight, I can assure you I will remember you and your husband in my prayers- prayers for peace and rest- I am glad you found this site- Blessings
Posted 7/15/2011 4:31 AM (GMT 0)
his psas for the last 6 months have been all over the place the lowest was 11.4 (not sure of the .4 ) that was during the taxatier we were off everything for 3 months because they wanted him to do the vaccine but his psa levels were rising to fast for the doctor and he didn't feel comfortable waiting for approval for vaccine. so 4 weeks ago he started him on the jevtana he had one treatment and it jumped 14 points. on July 11th he had his first treatment of mitoxantrone...... we go back on august !st..... he was diagnosed in 08 they could not remove the prostate so he still has it, it has not spread to any organs or his lympniods??? not sure i spelled it right he has spots on his hip, ribs, and spine the spot on his spine has grown part of the reason the doctor didn't wanna wait for vaccine i am not sure about the biopsy results i know that his psa levels where in the high hundreds and his Gleason score was 9 when diagnosed and they have not changed the score that i know of we live in Oklahoma i hope this is some help if you need more info if i don't have it ill get it ty all very very much
Posted 7/15/2011 4:33 AM (GMT 0)
ty octorobo
hope the info helps
Posted 7/15/2011 9:55 AM (GMT 0)
ForMyHusbandg9

I do not know you or your husband. What I will do is write your history and information as I understand it from both your posts:

Age ? DX 2008 PSA (hundreds) Gleason 9
Biopsy Gleason 9
Lymph nodes clear
Started treatment HT ? Lupron? Casodex?
Other treatments?
Feb - July 2011 PSA varies from 11.4 to 34.
Stage 4, Metastases on hip, rib, spine

Patient of Cancer Treatment Centers of America Tulsa Oklahoma ?
Treatments:
Taxotere
Jevtana (cabazitaxel) - Hormone refractory treatment PSA increased 14 points
July 11 started Mitoxantrone
Next PSA August

Did I get it right? Please correct the items where I guessed.
Cut and paste into another question if you have to.

I am not a doctor and your husband is further down the PCa road than most of us. There are few guys here who have a lot of experience with alternatives and the journey into the dark forest of refractory PCa. Hopefully they will make some suggestions.

On a different note, I did some research on CTCA and was not very comfortable with what I read: Money factories, hard sell, false advertising, false claims, etc. I hope your experience has been positive.
Have you received any second opinions along the way?

I wish you both well.
Jeff
Posted 7/15/2011 11:49 AM (GMT 0)
I'm sure this might upset some:

If you believe that holding your husbands hand and praying with him will solve the problem, then go with CTCA. Better yet, save the money and go to Church.

If your husband had a great deal of time and energy, he could play around with his condition with the folks at CTCA. He does not have that luxury and I would be be aggressively fighting with every reasonable MEDICAL tool available to me were I him.
Posted 7/15/2011 12:30 PM (GMT 0)
formyhusbandg9,

mlbsm (above) said it better and clearer than I. I have been doing more reading about CTCA. Everyone's beliefs and conditions are different. Personally, I would not pick such a place for my own care.

Jeff

Post Edited (Worried Guy) : 7/15/2011 12:09:31 PM (GMT-6)

Posted 7/15/2011 1:22 PM (GMT 0)
Age 55 DX 2008 PSA (hundreds) Gleason 9
Biopsy Gleason 9
Lymph nodes clear
Started treatment HT ? Lupron
Other treatments?
Feb - July 2011 PSA varies from 11.4 to 34.
Stage 4, Metastases on hip, rib, spine

ty all of you for your comments.. before we went to cancer treatment centers the docs said there's nothing we can do we got 2 other opinions before going to ctca he did the radiation also at the start of visits to ctca we have had a pleasant experience at ctca but i do not feel they r being up front about where we r at in his fight i do not want him to go through hell for nothing if u know what i mean.... his quality of life has totally changed ..we do not do much any more and had hopes of doing things before he is unable, but its a constant worry about being far away and having to come back in time for treatments and also for his comfort I am not delusional and think they r gonna cure him I know he is terminal. My husband made the comment that he will prolly make it til Christmas and that's it so I asked his doc at ctc and they say well we r worrying about next Christmas not this one still not a straight answer i just need someone to be straight up with me r we at a point in this where he needs to start doing the things he wants to do... I have read everything i can even though i don't understand most of it .... when should his rising psa levels be a concern ctc seemed concerned when the jevtana didn't work but when i asked what now they just said we will try another chemo..... is there gonna be a point where there's not gonna be another chemo treatment to try... or r we grasping at straws now ...I am sorry for the jumbledness in my writing but i write as it pops in my head plus i feel like i am being blind folded and shoved in to the jungle please any advice or suggestions or personal info is most welcome
thank you all
Chrissy
Posted 7/15/2011 1:33 PM (GMT 0)
Worried Guy & mlbsm have brought up points of concern- Your husband needs treatment from a leading prostate cancer specialist- For me or my loved one, I would be locating leading hormone refractory prostate cancer doctors, university teaching hospitals and/or clinical trials. I would search the web - then make contact with the ones that you have the ability to travel to and the insurance/or money to pay.

Here is another website for a secondary starting point: http://hrpca.org/ which concentrates on hormone refractory prostate cancer.
Posted 7/15/2011 1:43 PM (GMT 0)
if someone knows of another place to take my husband in Oklahoma please tell me we have great insurance but financially unable to travel far

thank you Chrissy
Posted 7/15/2011 1:50 PM (GMT 0)

I suggest that you get to a true prostate cancer specialist.   MD Anderson in Houston is just a few hours away.   Dr. Oliver Sartor at Tulane in New Orleans is also within a day's drive from you.   These places see the tough, advanced cases regularly, whereas at most places your husband would not be the normal patient.    They will likely be more innovative based on their experience and may be in a better position to get him into a clinical trial.

A drug currently in trials that is initially showing significant treatment effectiveness for HRPC patients that have bone mets and have used taxotere is Cabozantinib XL184 made by Exelixis.   Check their website and also look at www.cancer.net, the website for the American Society of Clinical Oncologists (ASCO).   Recently at their meeting a paper was presented that shows the initial effectiveness and looks very promising.

Most of all quickly get to a true PCa specialist.   I live in Atlanta and if I relapse I will go either to Dr Snuffy Meyers in Virginia or Dr Oliver Sartor in New Orleans.   With your location, Sartor could work for you, as well as MD Anderson in Houston.

Good Luck

Posted 7/15/2011 5:16 PM (GMT 0)
Dr. Brian A. Link practices urologic oncology at Mercy hospital in OKC. He did a Fellowship at the City of Hope in California. Younger guy that got very high marks from a physician friend of mine.
Posted 7/15/2011 5:27 PM (GMT 0)
Very sorry to hear about your and your husband's situation. This board is a great place for support and ideas. My situation is early stage, so I don't have personal experience with your situation, but I agree with JNF and others that the most important thing for you is to find a medical oncologist who is highly experienced in advanced prostate cancer. Meanwhile, start collecting copies of all the test results in the history of your husband's treatment, so the doc you go to see has a complete and accurate picture of what has happened and what has been done.

Stage 4 is hard to treat. Some docs say "there is nothing to do" and indeed you have to be prepared for the possibility that the available treatments do not provide much help. For many docs who treat PC only part time, this situation is out of their league. But some patients have found approaches to manage the disease that provide years of good quality life, so it is important to seek good, experienced advice and not give up. There are trials that your husband could get into. This is a fast moving field, and new and promising research is announced frequently in the journals and at the medical conferences.

You might want to do some reading - try "Surviving Prostate Cancer" by Patrick Walsh. It has a chapter on advanced prostate cancer.

Good luck.
Posted 7/15/2011 5:30 PM (GMT 0)
Hello Chrissy, Your husbands situation needs immediate attention. At his age, there are several options that are available, but you need someone on the cutting edge of Prostate Cancer treatment.

I have been to Dr Shi-Ming Tu at MD Anderson, and to Oliver Sartor at Tulane. (They were 3rd and 2nd opinions for me.) If it helps, here is information for both;

Dr. Shi-Ming Tu - 713 745 7575
MD Anderson
1212 Holcombe Blvd
Houston, Texas 77030

Dr. Oliver Sartor - 504 988 7869 (ask for Beverly)
Tulane University
1430 Tulane Ave SL-42
New Orleans, La 70012


My first choice, by far, would be Dr Sartor for your situation. Please, please go see him. Dr. Sartor can be difficult to get an appt with, so If you call for an appt, insist on talking to Beverly. SHE will help you. I know this from experience.

God bless you, and please keep us informed. Several of us on here will pray for you.

k
Posted 7/15/2011 7:10 PM (GMT 0)
"if someone knows of another place to take my husband in Oklahoma please tell me we have great insurance but financially unable to travel far

thank you Chrissy"

It may help to talk to Rick Profit of PAACT.

616-453-1477

Sorry if that info is against the rules

Posted 7/15/2011 9:08 PM (GMT 0)
Dr. Myers, Sartor, Scholz, Strum, Zogelzang and some other PCa specialists can do some unique protocols, that are not done by hospitals or large institutions.  They have videos you can find links to herein on H.W., maybe see what they do in some situations.

Post Edited (zufus) : 7/15/2011 6:10:52 PM (GMT-6)

Posted 7/16/2011 1:55 AM (GMT 0)
  formyhusbandg9;

   sorry to here it not going well, I was dx about 2 1/2 years ago  it took 10

months to get a handle on it.

  psa 118 dx  49

 gleason 9     spread spine/liver /hips /lungs/shoulders/neck/lymph nodes

 tak 700 lasted 17 months

I finally got on a trial drug tak 700 that did the trick it a hormone drug that

works on adrenal glands, there is a new drug that came out for after chemo that is in the same family [ Abiraterone ].

 Friend of mine psa was over 200 he also had tryed taxatier/jevtana they did not work for him either, it was climbing at a rate of 30-50 a month.

he started the [Abrraterone] and his psa droped almost in half in one month so I look into that med  good luck

      alf203

 

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