Experience with Lupron treatment and side effects

@JamesB 

just wanted to ask how old you are. You mentioned once you were skiing just two years ago. I am 71 and was walking 5 miles a day before Lupron. Seems so long ago....

R

@Rbeck1234 

Rich, I actually am staying with my Dr.s down in OC.  My last PSA jumped up a little after a two months off my regular 4 month cycle.  Went from 0.23 to 0.78.  The meds help me with both the pain from the Lupron and the Mets.  I am on 3 different meds now.  The hydrocodiene, a generic for Soma and the ms.cotin.  Still have bad days and tolerable days.  Unfortunately, my Dr sent my scripts to the local CVS and my first experience has been really terrible.  So will be trying the rite-aid.  Hope that you have a better day tomorrow.  Just getting ready to turn 68.  My best. Jim

@JamesB 

yes, getting pain meds these days is difficult. My first prescription was really a mess I was told they don’t stock anything and try a different pharmacy. I tried ALL pharmacies. In the end I had to wait a month for it to be filled. But once in the system, no problems ( so far). 

My oncologists told me that there would be no pain from the Lupron unless the cancer had already metastasized.  I agreed to try it and have not experienced any unbearable side effects during the one week since the first injection.  The worst side effect is the constant fatigue, which keeps me in bed for 12 hours a day and yet I cannot sleep.  I am very unhappy at the chemical castration effect of the drug.  I decided to start calcium, tumeric and ginger supplements as well as a protein booster to counter the worst side effects I was told to expect.   I am now ready to begin radiation.  I was only offered one option, a nine week fives a week treatment. 

So many people are given such different information and and offered different options.  The copay for the Lupron is more than $550 every three months for each injection. 

I have had more counseling on how to pay for the treatments than how to deal with the side effects.  I have separate oncologists for the radiation and the hormone therapy.  As with urologists there is an assembly line approach and each doctor has to be told of my concerns for my dignity, privacy and safety.  Rachel Maddow observed that the doctor does not concern himself with compassion for the patient's pain and discomfort but focuses on destroying the cancer.  When I was in labor management programs I partnered with a veterinarian student.  When I asked him why he was taking so many labor relations courses he told me he could handle the animals but was concerned with difficulties of dealing with staff.   I think this is the same attitude prevalent among many doctors.  They focus on the disease and forget that they are dealing with sentient human beings who need information to make informed decisions about their bodies.  The patient has to do the research to get information from doctors who only reluctantly provide information the patient desires and needs.  I also have noticed a resentment from the doctor when I share information I have learned fro the web.

I would appreciate and help in dealing with this issue and if others are having thee same experiences with Lupron as I have had and what to expect next.

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Thank all of you who commented.  It is important to learn from the experiences of others.  You provide a real service in informing about the things the doctors do not concern themselves with and do not consider important.  One of my biggest problems is that the time will come when they stop letting estrogens dominate my body and allow some male hormones to let me be a man.