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My Dad...can anyone help me? Side effects of Casodex and Lupron

Mallie
Posts: 10
Joined: Sep 2009

I am very new to this site. My dad was diagnosed with advanced prostate cancer about 1 1/2 years ago which has already metastatized to multiple bones in his body. My dad is around 70ish. Nonetheless, the pain doesn't lessen at all due to the age factor. Me, my mom and my husband's heart are extremely heavy due to this diagnosis. We have watched a very vibrant, humorous, healthy, outgoing and wonderful man go through something that I wouldn't wish on my worse enemy. The love that I have for my father is beyond what any words could ever express and it has been hard watching him go through this intense pain. However, about 2 months ago, his doctors started him on Casodex and Lupron shots. He is scheduled to get the next injection in October. I truly praise God that he has felt much better than before since the combination hormone therapy. He has not had to take a pain pill for about 2 months now. The side effects have been hot flashes on and off, occasional tiredness, some lower back pain, a little bit of weight gain which he desperatly needed and he said that hair is just growing everywhere (under arms, etc.) Overall, he has been in much better spirits lately and again I give God all the glory.

I do have a couple of questions for anyone that might be (or knows anyone) on the same meds that my dad is taking (Casodex & Lupron shots)? I know that this might sound very weird coming from a daughter (but I am a married grown daughter), I've spoken to my mom because I keep reading about the men taking these meds having their sex drive significantly decrease. Has anyone tried any types of meds to try to help them out in that area such as Viagra or anything and what were the results? Also, does anyone know of anyone to have broken any of their bones, in particular their femur bone? That is the bone that the doctors seems to very concerned with. In addition, has anyone experienced the hair growth while taking these meds. Please help if you can. I thank you all in advance for any light you can shed.

I pray for everyone on this website and I thank all of you for your stories. We all need as much information and emotional support as we can get.

Warmest regards,
Mallie

pwiggins
Posts: 9
Joined: Sep 2009

Hello Mallie -

I am a 47 year old male with advanced prostate cancer. I had my prostate removed this past Feb. and unfortunately it had spread to my pelvic area. I experienced pain in my left hip and after many tests [bone scans, ct scanes, MRI's and prostoscint scans] they detemined it has metastized in this area. This past May I was given casodex to begin my hormone therapy before being given my first Lupron injection. I did not experience hot flashes right away but I do now. As for the lack of sex drive yes I have definitely experienced this. I plan to meet with my surgeon and medical oncologist to discuss possibilites to help in this area.

As for the fermur bone my radiation oncologist has the same concern about the weaking of the bone therefore I elected to have a three week radiation treatment in the pelvic area. The ONLY side effect I experience was some fatigue but the pain is gone and my PSA went from 4 before surgery to 16 post op to 0.34 just two weeks ago.

May I also suggest meeting with a nutritionist who deals specifically with prostate cancer patients. Any form of tomato's and broccoli in you Dad's diet is very good for the body also get additional calcium and vitamin C is good.

You have three things going for your Father. 1 - A loving and supportive family, 2 - The good Lord and 3 - the prayers of others.

Peter -

Mallie
Posts: 10
Joined: Sep 2009

Hi Peter,

I thank you so very much for your response, advice, guidance and for sharing your personal story with me regarding your experience with advanced prostate cancer that has metasticized to other areas. I will certainly take heed to your advice and reach out to a nutritionist who deals specifically with prostate cancer patients. I know that my dad's doctor did tell him to eat lots of fruit, liver and spinach. That does seem to do wonders for him and it definitely makes him feel stronger. Until I speak with a nutritionist, I will also tell my mom to add all of the things that you suggested above to his diet. I would appreciate if you would also let me know what your doctor says about the lack of sex drive and anything else concerning the femur bone. That really seems to be an area of concern. I know that they were even suggesting that they replace my dad's femur with some type of metal rod to prevent any breaks altogether. He hasn't really embraced that idea as of yet but he is talking about it.

I thank you for your uplifting words / spirit and for the wonderful "three things my dad has going for him". Please know that I will certainly lift you up in prayer as well. It does seem as though there is hope for men with advanced prostate cancer. I am diligently reading up on the different types of treatment.

I look forward to hearing from you soon and please know that you have others praying for you too. God will see us all through this.

Warm regards,
Mallie

Bill91101
Posts: 34
Joined: Apr 2009

Hi Peter,

Hope you are feeling better! A couple of questions, if you have the chance to answer:

1) What type of radiation are you getting? I had nine weeks of IMRT (Vantage Oncology)

2) I am in Southern California, and would be interested in talking with a good nutritionist. Does the nutritionist you are seeing recommend anyone in this region?

You definitely have the right mental attitude- stay strong, never surrender!

Bill

pwiggins
Posts: 9
Joined: Sep 2009

Hello Bill -

Sorry for my delay in getting back to you. I had external radiation in the pelvic region of the left side of my body. I have three weeks of treatment each day lasting about 7 minutes.

As for a good nutritionist I was referred to one by my medical oncologist so I suggest starting there if you have one.

My next Lupron injection is Oct 16, then a subsequent one in Feb although we have discussions about doing a "holiday" or intermittent therapy. They would take me off the hormone therapy for an indefinte period of time while watching my PSA and testosterone levels.

Yes, I agree with the stay strong attitude. If treatments can give a person extra time who knows what new drug is right around the corner!!

peter007
Posts: 2
Joined: Feb 2010

Dear Peter, our stories sound very similar im a 44 year old Male from NYC. Just before Thanks giving 2009 routine cardiology appointment and blood work checked PSA level...found it to be 28... YES 28!!!!!!!!! NO Symptoms Was sent to Urology specialist Biopsy revelaed Prostae cance Gleason score 9!!! no history in my family of Prostate cancer!! my world was crushed! my Hunt began for the right surgeon after i was told it immedialty has to be removed! i found the best Robotic Surgeon on the Panet. Dr. David Samadi . Mt. Sinai in NYC did surgery December 31st 2009! surgery was complicated. cancer had pierced the capsul was in lymph nodes and was pressed against my Bladder neck. Doctor cleaned tissue off bladder neck best he could..did not get negative margin however. Doctor estimates proste tumoir there at least 4-5 years. as a result i have stage 3 or 4 it can be argued advanced prostate cancer! i have begun my oncology treatments at SLoan Kettering Cancer Center in NYC. medical oncologist started me on 7.5mg Lupron injection week after surgery and casedox 50mg 3 days after surgery. it seems your doctors waited a while to start the hormone therapy... i am freaked out over all Pet Scans, Bone Marrow scan and Pelvice scans scheduled this week to determine the metastasis and radiation treatment i will require.. Dr. Scher is my medical oncologist and dr. Zevlefsky radiation oncologist. i have been experienceing hip pain low back pain night sweats, mood swings, very edgy and feeling very upset not to mention for the illness and fact now that prostate is out my erectile dysfunction knowing that my left bundle of nerves had to be removed for the cancer spread! i take Viagra 50mg every night and no results with erection. dr, has me on Penis pump and just started Bimix penile injections to save my penis from atrophy/... please tell me what you have expereinced with Lupron and casedox. what can i expect... i feel at times the pain is the metastasis..what has been your treatment like? have you responded with Lupron and Casedox? any thoughts will be helpful i also have an e-mail if its easier to communicate with me! i want to get through this so i can help others not be afraid! here is my email law69007@aol.com any advice any guidance will be sooooo appreciated! hope you get this!!!

Peter

pwiggins
Posts: 9
Joined: Sep 2009

Hello fellow Peter -

Sorry for the delay in responding to your post. When I began Casodex in June of 2009 I realy didn't notice anything different and I was on it for one month before they gave me Lupron. After I received my first Lupron injection they took me off the casodex and I did not experience much side effects for the first three weeks. Then I began to have hot flashes especially at night while sleeping. They were really not to bad and would last about 3-4 minutes. I can't tell you how many times a day I would experience the flashes since I really never thought to count.

As for the metastasis pain it began to subside rather quickly once I went on Casodex then Lupron. Three weeks of low dose radiation also helped.

As for dealing with the news that my cancer had gone to my pelvic it was extremely tough. It was Memorial Day weekend of 2009 and during that weekend I could not get my mind to think of anything other than death until I hit my knees and prayed to the good Lord to cope with what I have and to gain strength to fight the fight and live a "normal" life.
My PSA went from 4 before surgery to 16 three months after surgery to 0.13 as of this morning. Altough I know hormone therapy is not a cure it can keep my PC under check for a period of time until perhaps a discovery [which is closer than one may think].

Peter, the only advice I can offer is to stay positive by celebrating the little things in your life. Keep a good balance of exercise and nutritional diet while trying to minimize stress [notice I didn't say eliminate as it is hard to do] and be thankful for those around you who love and support you. I do have a pity party every once in awhile but it seems to be less and less. And when you do have a pity party that's okay just try not to allow it to be too long. My email address is r3labs@comcast.net should you want more info.

Peter -

newatthis
Posts: 3
Joined: Mar 2010

Peter,
I read your comments responding to Mallie and am hoping you can help me. My husband just finished 14 radiation treatments on March 9. He had a prostectomy several years ago and underwent radiation to the prostate area a couple of years ago when his PSA went up. Since then, he developed several lesions in the spinal cord area and the last radiation seems to have helped with the back pain he was starting to experience. This last radiation really did him in. He is taking alot of medication along with Lupron shots.
He is exhausted most of the time, but more importantly, he isn't eating. He has no appetite and was eating less than 700 calories/day most days. Nothing has taste and he can't seem to force food down, other than Boost. I'm very worried about him because his short term memory has been effected greatly. I know that he needs to eat healthily, but he just can't. I don't think he can continue to function like this. The treatments seem to be working, but he is starving himself and can't seem to fix it. Do you have any ideas that can help?
Thanks so much~

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

That is a serious problem. You need to discuss it with his doctor ASAP. It could be from the disease, or from the meds, or both. I've had it from both, and it is no fun, whatever the cause. The ACS has some good info about it, as it is a common problem. Frequent, small meals can help. Don't try to stuff him, it won't work. And go for high-calorie foods that he likes. Cheesecake worked for me. I couldn't NOT eat it! This is not the time to worry about eating healthy.

http://www.cancer.org/docroot/MBC/MBC_6.asp?sitearea=ETO

Bill91101
Posts: 34
Joined: Apr 2009

Hi Mallie,

Very sorry to hear about your Dad!

I am receiving Degarelix, which is a newly FDA-approved (12/08) treatment that seems to be more aggressive than Lupron. My PSA has dropped from 89 to 0.6 since I started receiving the injections in June. They are once per month. I've also had radiation (IMRT).

I feel pretty good (TG!) I haven't gotten to the point where I've considered Viagra, etc. I'm waiting to get the official word on how long the injections will continue.

I believe the side effects of Lupron and Degarelix are about the same, but the latter seems to work a lot quicker at lowering PSA.

I thought I would mention it, so that your Dad could talk to his doctors about it.

Take care, and stay strong!

Bill

Mallie
Posts: 10
Joined: Sep 2009

Hi Bill,

Thank you for the very helpful information. I will certainly mention this to my dad. He goes back to the doctor in October for his 2nd Lupron injection. At least we know that there are other options. I am very happy to hear that you are feeling good and your psa levels have dropped. Thank God for that!!!!! Well thanks again for the info. I appreciate it from the bottom of my heart.

Take care, stay encouraged, stay strong and GOD BLESS!!!!
Mallie

Bill91101
Posts: 34
Joined: Apr 2009

Hi Mallie,

I saw both the Urologist and the Radiation Oncologist this week.

My PSA has dropped from 0.6 to 0.5.

I am continuing on the Degarelix every month. Other than the side effects of little to no testosterone, I feel really good. Not exactly sure how long I'm going to be on it.

I don't have to see the Urologist for three months, and the Radiation Oncologist for six! Yeah! (they're nice guys and their office staffs are really good,I'll miss the regular chats.)

My prostate is normal size/shape now.

Urologist is really happy- told me "we're winning this battle!"

Hope your dad gets some more info this time.

Stay positive; visualize healing.

Bill

Mallie
Posts: 10
Joined: Sep 2009

That's great news! The fact that your psa levels continue to drop and all of the good and positive feedback from the Urologist. It always helps when the staff and doctors are nice peoople and a pleasure to be around. This in itself is a blessing. My dad had a bad experience with one of his urologists who was extremely negative and it mentally tore him apart because of the doom and gloom that she presented regarding the situation. He has now changed urologists and this guy is wonderful. This doctor has people skills and he stays positive and gives my dad hope. He keeps everything real but he does give hope and he focuses more on the positive over the negative. This has in turn greatly improved my dad's mental state. The power of the mind is really no joking matter. A lot of times, along with God's incredible strength, it's our minds that can determine whether we fight and make it or give up and lose battles throughout our lives.

I am very happy for you and will still keep you in my prayers. I am going to stay positive throughout this battle. That's the only way to do it. I am visualizing healing and I thank you for your response and encouraging words.

God bless you...Mallie

peter007
Posts: 2
Joined: Feb 2010

Bill with such a high Psa doctors did not think you needed to remove the prostate?? was your cancer past the capsule?? how old are you??? please help out and give me some insight

gaburrell
Posts: 25
Joined: Jul 2009

Hi Mallie,

I am a 54 year old with intermediate risk localized Prostate Cancer but due to other health problems was unable to select surgery. So it was determined that External Beam Radiation along with Hormone Treatment was my best choice.

I have not had radiation treatment yet, which is scheduled for late October.

I started on Casodex mid August and only experienced an upset stomach the first few days. Late August I had my first Lupron shot which did not affect me until about my third week when I experienced alot of bone pain in my ankles, knees, elbows, wrists and fingers all at once. That has now mostly gone away.

I have not broken any bones but was a little fearful when I had all the bone joint pain.

As far as sex. I still have about a 3/4 erection but there is no ejaculation at this point.

Hopefully this helps and good luck with your father.

Gil

Mallie
Posts: 10
Joined: Sep 2009

Gil,

Thanks for the response and helpful information. My dad goes for his 2nd Lupron injection next week. The hot flashes are really frequent. Thanks to all of the wonderful advice, suggestions and shared stories on these websites, I was able to give my Dad lots of feedback regarding this. I also have quite a few things that I want him to discuss with his doctor when he goes back. Thanks again, I appreciate your response. Thanks for the well wishes.

God Bless You,

Mallie

christie39
Posts: 3
Joined: Oct 2008

Dear Mallie,

I am a fellow daughter that completely understands your heavy heart. My dad passed away one month ago. He was 69 years old. He first was diagnosed with pc when he was in his early fifties (1991) and he opted to have his prostate removed. He was cancer free up until two years ago when it came back. When they found out that it was back it was so widespread, mets throughout his skeleton. He was immediately started on Casodex for one week and then Lupron shots every four months. This brought his PSA from 258 to .5. Thatworked for about six months, then the PSA started rising again. Ay this point they started him on Taxotere, while he continued the Lupron. Taxotere kept his PSA around 100 or so for about four months. At that point there was nothing much left for him and the docs said he was not stable enough for a trial.

He also had potential issues with his spine and hip possibly breaking. He was given Quadramet which is a form of radiation to strengthen those weekened areas. Maybe you should ask his doctor about that. Also, is he on any form of bone strengthening medicine like Fosamax? If not, I would also ask about that.

If your Dad was diagnosed 1 1/2 years ago you probably have all of the books out there. If not, I found that reading and learning about my dad's particular stage of cancer was very helpful. Also, I found that when talking to others about treatment make sure you are comparing "apples to apples" so to speak. So many people would call my Dad with a story about a friend of their's that was on this or that therapy. Come to find out they were in a totally different stage. Very well meaning but confusing to my Dad.

I feel for you and your family and would be happy to help you with information if I can.

Sincerely,
Christie

CharlotteAnn
Posts: 2
Joined: Mar 2010

Your post , was heart warming. I am sorry that your Dad wasn't able to be with you longer. It seems that this disease is a long term fight.
WE have been fighting since October of 08. Just recently my s/o was taken off of Casodex and his PSA jumped up to 273.
He will start treatment next week for his bones and a mild form of Chemo.

What should I expect , and what can I do to get thru this journey.

Thanks,
CharlotteAnn

CharlotteAnn
Posts: 2
Joined: Mar 2010

Mallie,

I was searching the web for answers and came across your message. My significant other, was diagnosed with PC in October of 08.
He is 75 and has been treated with Radiation and Hormone Medicine. Both Casodex and Lupron. It has been a battle and I will say that live everyday with your Dad and enjoy each moment. My s/o is very stubborn and really hasn't completely excepted his disease.
Today we were at the hospital for Acute Bronchitis. The immune system gets effected from this, and it's best to try and stay as healthy as possible , because the disease itself is complicated.

His PSA bounced up really high and the Dr's took him off of the Casodex for about 5 weeks and the last test showed a PSA of 273, the next trip is to the medical oncologist to start the Zometa for the Bones and the mild form of Texatera a form of Chemo.
We have been doing this since the fall of 08 and it is a long battle. I am glad that I found your name to send you this information, if you want to chat .

As for your dad, I am not sure why the Dr's would want to operate on his femur to replace a bone that "may break. The radiation on the femur was to prevent this. The Zometa is the med for the bones.
WE also have a friend that is going thru this, and he was taking off of the Med Casodex and it will interesting to see if his PSA goes up.

As far as the Sexual Drive. Good Hugs and Kisses are the most we can expect. ONe Dr prescribed Cialis, and the Urologist said No.
This fight is hard enough to complicate things with other issues..
Take each day at time, and enjoy. My s/o would prefer to deny what is going on.

I would like to hear more about a special diet that is recommended for PC. I hear the sugar and beef is a no no.

Thanks for reading my post.
Take care
CharlotteAnn

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