Sick of the meds

[Survivor1965]

Hello Johnny here.

Diagnosed late 2011 at 46 years old, Gleason 9 (4+5) PSA 50. An aggressive cancer they said. Prostatectomy 2012, 21 bags of chemo, lots of hormones, Firmagon and Lupron, Zytiga, now Xtandi. Bone metastasis, lymph node involvement, the whole enchilada. Have had several cryoablasion procedures which helped.

Xtandi and Lupron are working for me now 7 years in. Amazingly my PSA is undetectable. They say the average effective time of Xtandi is 18 months and I’ve been taking it for 19 months.

I hate the way the hormones make me feel, mentally but mostly physically. Totally winded and no endurance, dizziness, lightheaded, muscle weakness and pain, sleep issues, etc .

Stopped working and trying to enjoy every day with my wife and kids and family.

[Dhenzkie]

Hi Johnny. Hope your doing fine now.

[Heidabelle]

Please hang in there. Boy, you a trooper. You’re a superstar to your family (I can only imagine!) and strangers like us, in the internet world, think you are downright amazing. Each day is a challenge, I can see that. You sound like you have a strong will, & that is definitely one of your super powers. You have every right to say how you feel- the side effects are obscene. Keep doing what makes you feel good (or at least a smidge better) - rest, take time to do an enjoyable activity, start taking walks in nature, spend time with family, etc etc. You’ve been through such a long, excruciating journey...the only thing to do is keep going & tackle the obstacles. You are definitely one heck of a human for dealing with it all like a champ. 💪🏽👍🏼🤟🏼 (From a gal that is witnessing her 72 yr old father go thru similar issues)

[Survivor1965 in reply to Heidabelle]

Wow thank you so much, reading your reply really boosted my spirits and made me feel good! Many thanks and blessings to you and your family

[Heidabelle in reply to Survivor1965]

Blessings to you & your family as well! 😊

[tallguy2]

You are doing well! I love to hear about undetectable PSA values. That's awesome!

Yes, like you I have been on Lupron/Eligard for 6+ years. You don't have to go it alone with those symptoms...please ask your MO for suggestions. For example, I take venlafaxine to help reduce the hot flashes, and I force myself to do walks and swim laps to try to keep this disease at bay. And please, if you are experiencing bone pain please speak with your doctor. There are a number of options for you, many of which have been mentioned on this forum.

Good luck!

[Hidden]

Johnny , Although we’ve had a different treatment path. I ve done RT and Adt only so far.. I’ve been undetectable for 3yrs now.. but I also have the same exact symptoms as you... 4 yrs on adt .... I relate brother...Amen

[Magnus1964]

Hang in there, I have been on xtandi for 3 1/12 years. It gets better. Try some exercise, I am on an elliptical for 30 min a day. Yoga may help if exercise is too much for you.

[David20451]

I am a 19 year fighter. Been on Xtandi now for 4-1/2 years. You are an individual not a series of numbers and probabilities. Hang in there. Try to stay active. I know that working out has been very important for me.

[Survivor1965 in reply to David20451]

My Dr told me in Sept that the average effective time for Xtandi is average 18 months. Guess that’s bullshit too

[Hidden in reply to Survivor1965]

No he did not tell you that. Either you or the MO does not understand. Xtandi showed a benefit of approx. 17 month improvement in median time; not average time of effectiveness. I could be wrong, but I doubt it.

A median is the middle value. In looking at statistics it is important to understand three words: Mean, Median, and Mode. Simply put Mean is the average where one adds up all the numbers and divide by two. Quite a big difference from Median. Mode is the value which occurs most often. If there are no repeats of a value, then Mode is not used.

If I have confused you, a simple way of arriving at Median is to list all the values in numerical order from bottom to top.

BTW, Xtandi has a Median Overall Survival of 35.3 months. And a 83% reduction in the risk of progression or death. Finally, the median age for the trial participants was 73; with a bottom value of 48 and a top value of 83.

The last point is to never forget that you are a Statistic of One. Numbers do not matter; nor are they applicable to you. Stay positive and keep rolling up the undetectables...

Gourd Dancer

[Magnus1964 in reply to Hidden]

Good post, I have a gleason score 9 and have continued to amaze my doctors by getting years out of ADT drugs that are suppose to have only months efficacy.

[JimVanHorn]

I was on Lupron for 6 1/2 years and did some things for the side effects. I used Tylenol 600mg 8 hour timed-release -generic from the drug store -(3 a day) for hip pain and being able to sleep at night. It is not habit forming and doesn't affect your stomach. I took Vit B-12 2000 IU chewable when I felt like an old man (well I am 73 years old). I also took calcium 2 grams and 2000 IU of Vit D3. I have CPAP machine because I snore and I use it when I nap to give me extra oxygen. They checked my hemoglobin levels and it was low so the doctor gave five IV's of Iron to boost my hemoglobin. My hemoglobin is up to 11.7 now. I was taking naps some days. I try to eat a well balanced diet with 3 meals a day. I always have a large breakfast (no egg yolks). Right now my cancer is gone, but I am on active surveillance every 6 months. My PSA is 0.000. Now each of us have different types of cancers in different places, but the side effects are about the same. I wish you well and you can ask me about some side effect you are experiencing anytime. Remember to just keep truckin'.

[IgnatiusN in reply to JimVanHorn]

This is a great post👍.

[DaveHopes in reply to JimVanHorn]

Congratulations Jim! What an amazing story! I just found out recently that I have Stage 4 Prostate Cancer with a Gleason score of 9 and a PSA of 233. My wife and I are desperately searching for the best hospital and doctor in the country. My I ask who is your hospital and doctor?

Dave G

[JimVanHorn in reply to DaveHopes]

You can ask me anything! I live in Orlando, FL and I had two pretty good hospitals from which to choose. I looked on the internet and found one was a little better and chose that one. I had a urologist who knows a lot about cancer and an oncologist who was also a hematologist. I also saw a third doctor for a second opinion. I read up on the side effects of Lupron on the computer. It is used by infertile women to have multiple child births, but in men it tells the pituitary to stop the body from making testosterone (T). Prostate cells need testosterone to multiple, and without T they can not initiate cell division. I took Lupron for 6 1/2 years and at this time I am cancer free, they took me off of it last June. My bone metastases are gone as well. There may still may be micro-metastases, but I'll hope not.

Many people drive hundreds of miles (like to Mayo clinic) but most cities have excellent care if you check it out. My friend drove to Miami to get "proton radiation" and he also no longer has cancer. In my opinion proton radiation is not any better than normal radiation. I had 42 radiations in 2007 and I had no medical insurance. The hospitals wanted $130,000. but my urologist had the same machine (only newer) and they charged me what medicare pays them, $30,000. The proton is supposedly more accurate, but more expensive. In 2011 my cancer was metastatic bone cancer and I had 30 more radiations and started Lupron/Casodex. Keep asking questions and above everything else just keep truckin'.

[Survivor1965 in reply to JimVanHorn]

Wow Jim great story,

I see some wonderful success stories on here. Sounds like you have a great attitude. I have for a long time but seems lately getting kind of bitter and angry. Just tired of it all. Anyway, Ill keep on truckin as you say.

Many thanks

[JimVanHorn in reply to Survivor1965]

Hello, just saying Ho! All of these chemicals they give us causes other problems in the body. My B12 was low so with the oncologist's permission I took Vit B12 2000 IU chewable and that really helped me not feel like shit. I snore and got a CPAP machine and my oxygen is at 98% now. I drink about 1/2 gallon of water daily. I eat 3 meals a day including a large breakfast. My oncologist checks my hemoglobin every 3 months. My kidneys are going bad and that caused many problems with changes in blood sugar levels. At one point my creatinin was 5.1 (0.1 to 0.3 is normal). Now it is 3.7. I had a stint put in my heart that helped with my circulation. I am on 17 medications. By the way there is a hormone given off by the kidneys that tells your bone marrow to release Red Blood Cells. So I had to get shots of Procrit that is a synthetic hormone. My hemoglobin is 11.7 now. My point is that you have to look at your blood lab results and ask questions.

This may not be your thing, and I understand, but I went to church. They actually prayed for ME! I think it helped and I have friends to call now with similar interests. They prayed for my kidneys and they are getting better. Who new? I think the positive messages and spirituality help me from feeling down and out. So I guess I will close with "God bless" and keep truckin'.

[j-o-h-n]

Hello Johnny here, j-o-h-n here.

Now the best way to cope with all of those side effects is to L A U G H.

So here's one for you.

What did one cannibal say to another cannibal while they were eating a clown?

Does he taste funny to you?

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/26/2018 6:30 PM EST

[DoggieDaddy]

Did you ever get Casadex prior to your Hormone Treatment?

[Survivor1965 in reply to DoggieDaddy]

Never did Casadex

[paulofaus]

Hey Johnny, I wish I was doing as well as you. I was also diagnosed before age 50 (age 51 now) and I've burned through just about every standard treatment. I have moved to castration resistant territory, my cancer has morphed into small-cell. I've recently developed lung mets and I've stared Cabazitaxel, after 3 months of a different chemo protocol Cisplatin/Etoposide. I would switch places with you any day. I'm sick of the meds too, but I'd rather put up with the meds, thank not be here and miss my kids growing up.

[Survivor1965 in reply to paulofaus]

Man Paul I am so sorry to hear this. And now I feel like a big complainer when I hear what you are going thru. I know I am lucky I am responding the meds. I just needed to vent I guess. I will pray for you brother