Stage 4 Prostate cancer

[TET6489]

Three years ago told I had prostate cancer. After 28 bioposies 27 was cancer. Gleason score 8. 1 week later had prostate removed. 6 weeks later psa was 6. Started 40 treatments of radiation. At end of radiation psa was 8.5 . Took one lupron and side effects were terrible. It did drop the psA but is now rising 3 points per month. Dr acted as no big deal. Going to Vanderbilt next month

[Dan59]

What were these horrible side effects you speak of. Many of us have been on continuous Lupron or zolodex for years, some of the side effects can be managed. I always thought the side effects were better than the alternative. It is life changing

[TET6489 in reply to Dan59]

Gained 30 lbs weight real quick, no energy, bad depression even with bad thoughts on life. Had hot flashes terribly

[Dan59 in reply to TET6489]

I guess what I did was exercise , get more sleep, get on a happy pill if you have bad thoughts, and for hot flashes, There is always taking 1 estrogen patch per week, (transdermal) or maybe a fan. Up here in the North it is not so noticeable in cooler weather, and for that matter that side effect went away after a while on Lupron it became the normal,Women all go through these same hot flashes in life change. I do know that megace is not recommended by expert oncologist O Sartor for hot flashes , as he has said in some cases he has seen patients get a withdrawl response from megace, meaning it was actually feeding the cancer. Keep Fighting, as a message of hope I will tell you I was dxed at age 49 stage 4 Gleason 10 bpsa 148 , inoperable in 2006.

Dan

[TET6489 in reply to Dan59]

Thanks, I do get some comfort from reading about others. Thank you

[Gecrellin]

In the 3.5 years since I was diagnosed I have n ever had a PSA change as low as 3 points. Wish you well, but don't just focus on PSA.

[Hidden]

Fear not, young man. I put on 50 lbs. in about six months, and since dropped 30 of them. It's taken longer to lose than to put on. If you only had one shot of Lupron and you've got all the side effects already, I think your in the minority. Still, the side effects will subside at some point. The longest lasting for me are the hot flashes and fatigue. I swear the flashes are a monthly occurrence, a week of shirt on, shirt off.

Each of us are affected in their own way with all this stuff,. I hope a change will help out.

Joe

[Charlean]

I don't want to sound negative here so I will try to say this very carefully. For some reason, there are just men who find that the treatments including Lupron take away the quality of life that they wish for. You will find that there are many on this site who can tolerate these treatments with little to none of the side effects and get years out of one drug or another. They constantly tell you keep on..Then there are those who never really get much benefit from any of them and suffer tremendous side effects from everything they try and that take away their quality of life. This was the case for my husband. I can only say after watching what he went through, YOU and only you know whether you wish to continue these drugs. It is so difficult to know if they will work for you, or work long term, or cause terrible side effects because this disease is so incredibly unpredictable. Each person reacts differently, and the effects of the disease and the drugs can vary so much. It never ceases to amaze me how someone can have a very low psa and very agressive cancer and others can have psa's in the thousands and take a single drug and have years of very little worsening of their disease. There is no way to know until you go through it and decide for yourself.

That being side, however, I don't believe that the Dr saying no big deal is in your best interests. I believe I would find a second opinion and go from there but at no time should you ever continue on with treatments or drugs that you can't bare unless you feel it will help your quality of life. We often think length of time is the most important rather than quality of the time we have left but when I think of the months my husband lost being sicker from treatments or ending up in the hospital from the treatments, it saddens me so much that he lost that time because he wasn't really told how bad some of the effects can be or he wouldn't go against the doctors decisions. Question everything, research as you are doing, and make your own decisions always. Even family shouldn't tell you what to tolerate.

Charlean

[Scruffybut1 in reply to Charlean]

Well said Charlean. Women are often more insightful than those with PCa. You observe it, live with it, suffer it and care for your male half who has it. And you are usually more ready to talk about it. Thanks from all of us. David

[Charlean in reply to Scruffybut1]

Thanks David. Sometimes I am told I am too outspoken but it is just the way I have always been. I speak from my heart. I wish you well. As always, you are all in my nightly prayers. On a lighter note, I am curious about the name... Scruffybut1.

Charlean

[Scruffybut1 in reply to Charlean]

Thanks Charlean, scruffy was my 10th dog, most of which were rescues. Now on 12th this one from Battersea. He was named scruffy because no matter how often he was groomed either at home or by professionals one shake and he was scruffy,again. As I was starting my PCa journey he was beginning his departure. Lost him eventually at 15 1/2. On my 2nd since. Neighbours visit my dogs as well as me. And dogs who played with scruffy come an stay with me and my latest dog - they equate my house with scruffy and me! I love it. Shelagh my better half takes it well. As a nurse she sees the benefits it provides me. Take care.xxxx David

[Charlean in reply to Scruffybut1]

Nice story. Thanks for sharing. I think pets are so important to all of us. My dog is 13. Stay well.

Charlean

[Scruffybut1 in reply to Charlean]

Kingston is 4 miles away. I go to Charing Cross which is 8 miles away from me and not the best of journeys. Take care.

[charmander in reply to Charlean]

I appreciate your insights. I too think that sometimes the quality of the life we have left is less important than to prolong life. As I get nearer to the point of chemo my fears about the side effects are more like "maybe it won't happen to me" and I'll get some more time. I too don't want my remaining time tarnished by side effects.

Charlie

[Hidden]

What kind of Dr. thought it was "no big deal." A urologist, or an oncologist specializing in PCa? My urologist also thought my PSa rises were not big deal, but when I saw an oncologist at UCSF he had a different opinion.

[Joeym1040]

TET6489

Not sure if this is a duplicate,

I went on Lupron 6 yrs ago. A month after the first shot the hot flashes started. I still get them every 45 minutes even when I am off the Lupron for a period. I also put on 25 lbs.

!st year was terrible, mostly because I had no site that shared experiencesl like this one.

1st I tried hard and and lost the 25 lbs over the next 6 months. Suffered bad from the hot flashes, and could never get a doctor to prescribe anything. Most comment was that anything that took care of the hot flashes would have worse side effects than the hot flashes.

So I took most of my tee shirts, cut off the neck and sleeves. Makes for a comfortable shirt although I can only wear them in old time Florida bars, but a home they are great. Then I got 3 fans, all with remotes. So when I wake up at night I can just hit the remote, cool off, shut the fan off and go back to sleep. Position the other fans around the house where I will be hanging out.

About 3 years ago, a nurse told me to try Venlafaxine 75mg. I got the Dr to give me a prescription. It does not get rid of the flashes or frequency, but does reduce the level the flash.

Dr Snuffy recently did a couple of videos on the use of estrodoil patches in place of Lupron. Same psa control, and the side effects that they thought were bad, apparently are less than they thought and it seems estradiol is now a reasonable treatment. I am trying to get into a clinical trial that is using estrodoil cream rubbed into the shoulders to take the place of the patches which require close observation until the right dose is reached.

Don't get depressed, you can handle this. It takes some work but you will soon be enjoying life again. Chill out, cut those tee shirts, get the fans, and I would suggest a drink or two, for medicinal purposes only.

Stay well, fight hard, be happy.

Joe

[TET6489 in reply to Joeym1040]

Thanks, it this point about to give up

[stevecthomas in reply to TET6489]

TET6489 My 1st yr on Lupron was nightly hot sweats followed by cold chills. Blankets OFF, then would come cold chills and blanket back ON. Slept on couch to let my wife get her nightly rest...Watched many sunrises, then drop off exhausted to sleep...Was fortunate to be retired @ age 60 and getting close to drawing my Social Security. My onc. also prescribed 75 mgs. of Venlafaxine a.k.a. Effexor. ( also used to treat depression). Had to cut it down to 37.5 mgs as 75 made me loopy. In my case it cut down the sweats by 90%. But 37.5 still made me too drowsy so I switched to CLONIDINE, every third night and that knocked down the sweats in chills. The advise of using fans with remotes was excellent. Take care brother, Steve

[TET6489 in reply to stevecthomas]

Sounds a lot like myself. Now I am dreading the cost of the other drugs if I have to take. 67 years old, on retirement and social security. I hate to spend all my money on drugs and then die and leave my wife with out a comfortable life.

[Charlean in reply to TET6489]

Some of the newer more expensive drugs have organizations that can help you pay the costs and if you don't qualify then when you reach that supplement deductible, it's paid for anyway. As a wife whose husband felt the same way as you and used to worry about it, I will say that a comfortable life is not as important to us as your comfort. I spent all of the money I got when my mother passed away on supplements, cannibis oil, and whatever he needed and I don't miss one dime of it. With all that you are dealing with, you don't need to worry about that because I am sure your wife feels the same way I did.

Charlean

[TET6489 in reply to Charlean]

Thanks. It's just a bad thought

[Hidden in reply to Joeym1040]

I've been using soy milk in my cereal after reading that soy can help with hot flashes. I took my 6 month eligard shot 2 1/2 months ago. Just to illustrate how different we can respond individually I've had cold flashes rather than hot flashes. Several times I've woken up shivering with the room temp at 75 degF or warmer. Those occurences are rare.

[charmander in reply to Joeym1040]

My doc prescribed gabapenton for hot flashes. The drug reduces the severity of my flashes without any noticeable side effects. Joe I like your sign off: stay well, fight hard, be happy!!

Charlie

[Joeym1040 in reply to charmander]

Charlie, I was prescribed that drug for some othercondition, but made me seriously dizzy. Only took two doses. I take 75mg of generating which seems to reduce severity for me. Just accepted into clinical trial for estradiol cream to replace ADT,

Start 12/29/16. Fingers crossed.

Joe

[Dr_WHO]

Lupron effects people differently. Everyone has to decide for themselves if it worth it. I lost about 25 lbs after my surgery (T3N1Mx, Ductal). Rapidly gained it all back plus more when I started Lupron. Like others I get a mixture of hot and cold flashes - sometimes at the same time.

To minimize the side effects I try to work out at the YMCA at least three times a week but I can only lift less than 1/2 what I could before. Still able to ride a bike for about 20 miles or so two to three times a week. Biggest concern is I am beginning to get man boobs.

[TET6489 in reply to Dr_WHO]

After prostate removal and 45 radiation treatments psa 8.5. Lupron lowered it for two years. Gleason score was 8. How high has some men's psa got before their doctor was really concerned to try something else. Also my dr has never recommended a scan or nothing. Go to Vanderbilt next month.

[Hidden in reply to Dr_WHO]

Hey Dr,

I had to post when I came across this. I've been on Lupron for 6 1/2 years, and I wish there was something one could do to prevent the boob thing. I lost all my torso hair, except for some underarm hair, and a few light hairs around my new nipples. They went from normal guy nipple to...ugghh, I don't want to talk about it. Do you know the saying, girls today aren't like the girls I grew up with? Well, I got the boobs of the flat chested girl. It was quite painful over time and that caused me to have mammograms on both sides. No problem, except the boobs.

You'll have to get used to them. I have somewhat of a gut, so it minimizes the apparent size. I also avoid shirts that cling too much. When it gets chilly prepare for headlights, if you get my meaning.

I would like to hear from others, and their stories about this issue.

Peace, Joe

[gusgold]

T,

drop that doc fast...your PSA never went undetectable from either the RP or SRT which indicates your PCa has metastasized and your also have a DT of 30 days,,,right now you should be on lupron, taxotere, avodart, and metformin

[TET6489 in reply to gusgold]

Would u please elaborate a little more on your thoughts.

[Hidden in reply to gusgold]

"elaborate": Gus is saying that if the prostate has been removed, and you still have PSA, then there were prostate cells outside the prostate gland, and these are cancerous by definition, and metastatic. You have irradiated the "bed" and that has not killed them, so they probably were elsewhere. Where? And you have reduced testosterone, and these cells still create PSA. So not only do you have metastatic prostate cancer, but they are "castrate resistant"; namely they survive despite the low levels of testosterone that would have happened if you had had your testicles chopped off - the previous treatment approach.

Standard treatment since last June is taxotere and lupron. Gus adds avodart to affect DHT, and adds metformin to affect glucose (it's a diabetes drug thought to have anti-cancer properties.)

[Hidden in reply to gusgold]

if lupron is unacceptable, because of effects of low testosterone, you might be able to use casodex 150. Someone should know alternatives that might be available. The side effects are caused mostly by low estrogen, and that could be addressed, although it is a bit off the main line of treatment at present. Estrogen in men comes from (aromatization of) testosterone, so low T leads to low estrogen, risking hot flashes and longer term issues like bone loss.

[TET6489]

Went to Vandy yesterday to see new doctor. Couldn't believe I hadn't had bone scan or ct since cancer surgery. Go next week for both. Glad I changed doctors. Praying for good report but PSA is still rising

[charmander]

Tet, glad you are having the scans!! I've had a bone and CT scan once a year for the last 3. These scans illuminate any cancer locations (metastases or mets for short) and then track any changes. It is a very important diagnostic tool especially, as Martin points out, you may to be castrate resistant. Glad you took the step to get another doc!!

Charlie