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Xofigo-Don't believe their lies!

crzy4Jesus
Posts: 3
Joined: Mar 2014

I posted earlier about Xtandi vs. Xofigo. Now i will give the latest update for information to whoever needs some answers to this New Wonder Drug. As i posted previously, we have been blessed with my husbands prostrate cancer, diagnosed in 1999, in that we have been able to shoulder the costs associated with all of the treatments and medications. i have read the horror stories of widows who have lost their entire lifes assets to finance their husbands treatments, however, we have survived that part.

Now, here is my opinion, after my husbands Wonder Drug Xofigo treatments, the sixth one was last tuesday. After he discussed this treatment initially, i did all the research i could on this newly FDA approved Wonder Drug. The statistics were depressing. The study group of 100 had 8 die during the study, however, the study was stopped because they indicated that this drug was so good they needed to rush it to the public. When i went with my husband into the treatment room for his first injection, i asked the radiation oncologist why he had not discussed the mortallity rate of the study. He glanced at my husband (a retired M.D.), and then looked at me with a smarmy look as though i was just a trophy wife, blonde and stupid, and what would i possibly know about this study. When he answered, i swear he had fangs, and they were dripping. You see, each treatment cost $11,000.00, so each time he injected the needle into my husbands vein the cash register would sound. My husband would have to have a CBC and weight check the day before each treatment to check his labs, and to make sure he had not lost over 30 lbs. since the last treatment. After the radiation oncologist started the injection into my husbands hand, a physisist entered the room with a geiger counter to make sure that the staff and doctor did not receive radiation poisioning.

The first month my husbands pain went up significantly, to the point that he could only lie in bed, or recline in his lift chair. Prior to this treatment he was walking with a walker, going to Church and out in public. After this first month of vomiting, diariea, and unbelievable pain, his blood test went downward. Each time i would call his assistant to inquire if he would be taking the shot the next day, and always the same answer, oh yes, his labs look fabulous. After this i started researching these blood test to see what they indicated. i had employed a health care worker 6 months prior to these treatments to help with the bathing, and health care needs, and after the first shot, we were advised to wear 2 pairs of gloves, and 2 pairs of booties, because the radiation poisioning would be prevalent 2 days after each treatment. Oh, and you must flush the toilet with the lid closed, and flush it twice. Wash the handle, remove gloves and wash with antibacterial soap. After the 2nd shot and on to the 6th, my husband became weaker, in horrible pain, mean, vomiting, peeing and pooping the bed daily, until this last shot. Now, he is coughing up blood, blood in stools, blood in urine, and my healthcare worker says to me, from the time you hired me until those shots started i thought your husband was pretty healthy for having cancer for so long, but to be honest, i don't think he will survive another 30 days. Now he is gray colored, so weak he slips off the bed, and in general, not something any wife wants to watch. What this world has evolved into is not the world my husband practiced medicine in. In his time, he gave an oath "TO DO NO HARM"! Medicine today is all about money, not cures, and certainly not concern for the patients.

Before my husbands last shot he was just to weak to make the trip. i called to reschedule, and the doctor called my husband to plea with him to come and get his last shot. THIS would be the turning point in my husbands cure. It took me and my healthcare worker to hold him up to get to the car, and then to wheel him into the treatment room. There to greet him were the same 2 babes that flattered him by saying how good he was looking, all the while my healthcare worker and i looked at each other, and all i wanted to do was scream LIARS.

Today, 1 week later, the local primary oncologist is showing us the door. Better call hospice.

Sad. sad. sad. They told my husband in the beginning of this nightmare they could assure him of an additional 6 months. Funny, that is how long the treatments last. It is not about quantity of life, but quality of life. Dying with dignity. My husbands mind was fryed by the Radium, his bone marrow disintigrated, his life ends in a room looking out at the birds on the deck, and no interest in anything but the next pain pill.

If your husband gets this poison recommended ladies, do your homework and weigh the sides. After you ring that cash register bell, it can not be unrung.

Crzy4Jesus

VascodaGama's picture
VascodaGama
Posts: 1535
Joined: Nov 2010

Crzy4Jesus

I am sorry for the advanced conditions of your husband. I do understand your suffering and hope some sort of miracle occurs to improve his situation. He has followed the sequentials and I think you did your best to be ahead of the disease.

Here is your story;
http://csn.cancer.org/node/267150

Unfortunately the existing treatments for PCa are few and done on guessing without any assurances of a positive outcome. The “administrators” cannot be blamed if not forcing the action, because at the end we are the ones to chose. We try and try until the day we lose the battle. I am an advocate of treating but with Quality of Living ahead of anything.

Thanks for posting his story and the advice.

VG

rch
Posts: 78
Joined: Nov 2011

crzy4Jesus

I am very sorry to hear about your husband's advanced  Pca. Since the Xofigo treatment now discontinued, he might regain some of his strength back. Bone marrow might regenerate and GI symptoms might resolve. Gray color you mentioned might be significant anemia for which a PRBC transfusion or G-CSF might be considered prior to hospice transfer. I am sure your husband might be agreeable to that .It would also be covered by Medicare..I am really apalled that the Rad.Oncologist did not get the consent or explain the side effects or mortality rate of treatment , and was inhumanely continuing the treatment despite deterioarting symptoms based just on the lab numbers not the human behind it. This is a significant departure from the standard of care.Certainly he was not abiding by the Hippocratic Oath. I agree with you that the health profession has become a bit greeady but there are also some honest pysicians in the community. I am sure your husband is one of them.  Since your experience  has been very negative with the drug, you should report this to  www.fda.gov/medwatch, or call 1-800-FDA-1088

P.S. If the drug is approved by the FDA , I'm surprized it is not covered by the Medicare.

 

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