It's been a while since I've written. I've been quite sick but getting better and I hope all of you are doing well and had a blessed Thanksgiving. We are seriously considering stopping hormone therapy for a period of time. We will be calling the doctor on Monday to discuss this. We are thinking Elgie's quality of life would be so much better and if the cancer does come back.... hopeful that he could start the medicine again or start a new medicine. Any thoughts or input would be great because there are so many great minds here and we need them ;)...... that was the plan in the beginning to do intermittent therapy but all Docs said no once the time frame to stop came around. Thanks so much and as always....good thoughts for each of you.
Hugs,
Jackie
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erjlg3
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Jackie, what are Elgies stats, has has achieved undetectable psa for a year, did he ever have metastatic disease? How bad are his side effects ? How long has he been on hormone therapy? Happy Thanksgiving to You and Elgie and everyone else reading this. And Bless you Jackie for being such a wonderful caregiver.
Thank you so much. That's very kind Undetectable 0.05 for many years. His cancer doesn't produce much psa. He does have metastatic 5 places. Doctors say his bones have miraculously healed. Severe fatigue and weak. He's in bed most days. Hmmm....hormone therapy time I think since 2011 or 2012. Blessings wished for you Dan....hugs too.
I'm so sorry that you've also been ill. I had to postpone my friends bringing me a dinner because I've been to ill today.
And it's yours and Elgie's decisions entirely whether to start/stop therapy---doctors do not own us; we own our own bodies and have every right to control our treatment.
I cannot say whether or not intermittent therapy is best or not---but I will not allow a doctor to continue me on a treatment that I do not want. They're supposed to be doctors, not dictators.
Sometimes it is indeed wise to go along with the doctors, and sometimes we must do what we think is the right thing for us at the time. I happened to agree with my own treatments, and even asked for a few changes which they went along with.
I did want to try Zytiga, but my medonc did not want me to have it, and I decided to go along with her decision. She is the Director of Medical Oncology at the cancer center where I was treated, and I felt that her decisions were the best course for me.
I have no regrets about the treatments that I received, I only regret that I didn't get tested and treated earlier.
It's my body; and ultimately is my own decision what to do, not the doctors' rights.
JR is comforting me, and we both hope that you and Elgie are feeling much better.
Thanks so much Eric and Dan for your thoughts. We always listen to the docs but sometimes you have to wonder when your quality of life is not so great. We put so much trust in our docs and we're quite pleased with them but we don't always realize it's our own choice to make after we listen to their thoughts weighing the treatment side effects. It helps so much having all of you here with us.....giving us support and some extra backbone when needed
I really don't know those answers Dan. I've not heard it called that but maybe the docs were just describing it to what we could understand or maybe my brain didn't absorb those terms.
I'm glad J R is comforting Eric. My good thoughts, hugs and prayers and oh so thankful for all of you.
Well said Eric. I totally agree. Only you can decide when you've had enough. Only you know how it makes you feel. Jackie, we've spoken before and you know how I feel. I will continue to keep you all in my prayers.
Jackie, I agree with everything Eric says,Eric, So good to see you here, By does not produce much psa , do I understand you to say he has been diagnosed with small cell prostate Cancer, or neuroendocrine differentiation? I am glad you are feeling better.
We face the same difficult decisions. I am not a doctor and can only offer support and opinions, but enough studies show that aggressive treatments promote aggressive cancer (PCa) but some men have no choice. Ex spent all of thanksgiving, vomiting and fatigued due to jevtana and the ultimate decision of 'enough is enough' is so individual and so hard. He has had a very hard time with hormone therapy as well but ONC told him death will be swift without it. I hope you both find an acceptable balance between QOL and survival😊.
My heart goes out to you, your x hubby and your family. LG had to stop the Xtandi for those reasons. It was horrible but not what your x hubby went through. I think we're feeling he has the ability to go back to the meds when it rears it's ugly head but with some feel good time before then. I hope it works that way. My heart just breaks and aches for what your x hubby is going through
Thank you so much for your thoughts. My hugs and prayers for all of you and love.
Jackie, I wish I had some idea that i had some confidence in, as far as getting off ADT. The only treatment that is directed at cancer and that I think has no downside and some upside is Dr Pienta's (burixafor) at Johns Hopkins to remove (mobilize) some bone mets.
He also has a trial of hugs and kisses that looks promising.
Martingugino.....the Mets were radiated and seem to be in remission.
As for the hugs and kisses I'm sure that's helping Too cute.
I hope you did too....ours was peaceful.
My hugs and prayers for you and thank you so much for the smiles
I was diagnosed in 2002 with Stage 3, PSA 24 and Gleason 8. Because of my high-risk category, I had to have a three-part protocol with proton beam at Loma Linda as the primary treatment, complemented by EBRT and intermittent androgen blockade (IAB). The last one was my choice. My Loma Linda doctor had prescribed continuous androgen blockade of 24 months after Loma Linda. But after learning about the high incidence of androgen independence among those who have continuous androgen blockade, I decided on IAB. It involves shutting down my testosterone (the fuel for prostate cancer cells) for a certain period (nine months) so that the PSA goes down to 0 and then stopping the treatment and waiting till the PSA creeps up again before going through another cycle. In 2006 when my PSA had crept up to 1.3, I decided I did not want to take any chances so I started my first intervention. The IAB consisted of a subcutaneous injection of a slow-release capsule of an antiandrogen called Zoladex, good for three months and a daily tablet of Casodex. I chose Zoladex because that was what I got started on for pre-adjuvant therapy before Loma Linda. Plus I read disturbing information about side effects from Lupron, Eligard and the like. I would have three of the Zoladex injections at three-month intervals. My PSA went down to 0 and it took another three and a half years for it to creep up to 1.3 again.
Some IAB practitioners wait till their PSA rises to 10 but I didn't want to go that far. Better to nip it in the bud. I am now a 14-year survivor. I am very happy and ready. I'll be 78 in January. I now half-jokingly tell family and friends that I have stopped worrying about not living long enough and am now worried about living too long.
I like that you do not let your PSA go up past 1.3 I would not feel comfortable either going up to a 10 at all. Thank you so much for sharing your story. I guess that is what we are hoping to do is to go back and forth or on and off and see if Elgie can feel better at least a few months out of the year. It's definitely a scary decision to make and everyone's viewpoints are very helpful. Elgie is 68 and I'd like to keep him around for many many more years. You just keep on living
I used Zoladex. I got started on it by by urologist to keep it at bay while I was looking for the best treatment. Later, after my proton beam treatment, I was told to go with androgen blockade and elected to continue with Zoladex. I researched Lupron and found things about it I did not like. The only good thing is that it is inexpensive compared to Zoladex. But with Medicare coverage, it's down to the co-pay, which is not much. In Addition to Zoladex, I had daily Casodex.
I'm sorry to hear that Elgie is suffering from the ill effects of HT. Cancer treatment has always been a balance between life extension and quality of life. If that isn't hard enough of a choice, the difficulty of decision is compounded when doctors and patients are not on the same page. In the end, it's ours to make and that places almost of the burden on our shoulders.
And so, there are 2 camps even among doctors, intermittent or until failure.
I have been on continuous 3-month Lupron for 15 months now. I think I surprised even my own onc when I seem to be able to manage the side effects and continue to live along with the inconveniences of treatments without giving up so much of what I want to do on a daily basis.
But I don't know for how long my good life is with treatments. It could well be, we'll all end up the same way and the only question is how soon. And this is not to say I'm not been having the common side effects like chills, hot flushes and, also, I think my treatment contributed to my heart disease. So in addition, I'm being treated for it. For now, I still call it the good life. It's because my expectations have been lowered from pre-PCa when I was an active athlete and even climbed mountains.
From my own understanding of my Lupron treatment: it controls the progression of cancer and also kills some cancer cells. I know I'm attainting my first goal of controlling PCa progression. Since, I have been undetectable, I have had no scan to check if my metastasis is gone or how much smaller. So how much of my cancer cells are there just looking for ways to finagle with Lupron treatment to cause havoc once again? And if I relieved the Lupron pressure, what now?
Yes, uncertainty is a large part of the success of our treatments. At what point shall I call it a success or a failure. When I make that call, I'll ask myself how much more do I want from my life. Should I be selfish or be considerate to the loves around me? At almost every step of the way, the decisions and choices we make are never going to be easy. It may seem easy to others because it's entirely our own to make.
I for one believe there is a point in time when there is the lowest quality of life I'll hold in balancing it with treatment. Honestly, I don't know where that is as at 68 I continue to value my dear life.
My heart goes out to Elgie as he struggles with all these.
It would be nice if he could be out of bed we even and have some Joy without being so tired at least 2 or 3 days a week. The treatments have made him so tired ever snice he started them along with the hot flashes the weakness Etc. I'm so glad that he stopped the Xtandi. That was even worse. We are so appreciative of every secondo in our beautiful lives. ....we'd just like to see if he can feel a little better through some of it
My and Our good wishes and prayers for you and thank you so much.
I agree with most of your replies. It is your life and your choice. I made a decision six months ago to drop the daily bicalutramide, but continue six month Lupron. PSA up slightly, but still below .05. My hope was a slight increase in T, but not yet by labs. However, I do have more energy and less leg pain and that was my goal. Bottom line: I needed some really good days or else? I am thankful that goal was fulfilled. My goal is for a "managed treatment" rather than just following the "one size fits all" protocol. We are all different in how we want to live and our bodies reaction to treatment is also unique. My doctor was a little reluctant to this approach, but agreed to give it a try. At 78 years, a good day(s) is important. Blessings to you both.
Thank you so much Shepard. I like the managed treatment and not the one size fits all. I guess that is the point we are at ....where we are trying to figure out how best to manage and to feel good at the same time or at least to feel partially good. Thanks so much for your thoughts Always good wishes.
I don't know whether going off the hormone therapy is a good idea or not, however I think that Eric is certainly right about it being a personal decision in which doctors can advise but a patient has the right to make his own decision.
It seems to me that there are a number of conceivable options besides staying on the current drug or taking no drugs. Switching to a different ADT drug, e.g., from Xtandi to Zytiga, might reduce, or at least change, the side effects while still continuing the excellent response Eligie has had to his current drug. Another option is to try to get Provenge or another immunotherapy, perhaps while continuing the ADT for just another couple of months. There is some evidence that immunotherapy can be more effective when the cancer is weak, as it now is under the current ADT. Still another option is to start one of the weaker ADT drugs that has lower side effects in order to prolong the off period. One that is frequently used for this is dutasteride (brand name Avodart). It's a drug with relatively mild side effects that still has some impact on prostate cancer. You can find out more than you ever wanted to know about it here: rxlist.com/avodart-drug.htm (and look up other drugs there too.)
You have given us much to think about and discuss. Very good options. We're so appreciative of the thought put into everyone's messages. He's just been so tired and in bed so much of his life since starting the very 1st treatment what seems like so long ago. Diagnosed in November 2003.
Is it really so bad to go off and on of and on to have some quality of life???
I know this will sound counter-intuitive, but from my own brief experience on ADT and from what I've heard from others, exercise can be an excellent way to recover from the weakness and tiredness. Another fellow I know who has been on continuous ADT (just Lupron and Casodex, not Xtandi, which I know is rougher), since before Elgie. He went out walking for several miles a day and conquered his loss of energy. Thinking he had solved the problem, he stopped walking and, within a month or so, he was completely fagged out again. He built up his walking route again, and after a few weeks, began to feel a lot better.
If Elgie can get out and walk, maybe for just five minutes the first day, but maybe six minutes the second day on up to 10 minutes by the end of a week, and keep going a little further and a little longer if and when he can handle it, he might feel better. I'm sure it won't do any harm as long as he doesn't overdo it, and it might help him a lot. It might also raise his spirits a little to be out and about in the fresh air. The two of you might like to walk together. If you have a dog, I bet he or she would love to come along too. Or if Elgie goes alone he might like a little pocket radio or mp3 player to listen to music while he's outside.
And if you do decide on an ADT holiday, that's also a good time to build up a little exercise routine and then stick to it if he goes back on ADT.
By the way, Avodart is said to be a very mild drug with very light side effects, but for some men it can slow down the PSA growth in a way that enables them to keep off the heavier drugs for a longer time when doing intermittent therapy. I'm not an expert, but hopefully your oncologist will have experience with these things.
Best of luck to the two of you.
Alsn
Hi
I am so sorry to hear you have not been well. I hope you are doing better. Happy Thanksgiving to you.
So in the past I have done intermittent therapy. I was only able to be off treatment for about six months at each break. My psa doubles rapidly when not being treated. Of course I can't recommend what you should do but studies have shown that intermittent therapy is not inferior to continuous therapy. However I am not an expert and this is only my experience with my disease.
Hi Bill! Thank you and I am getting better. ..it just keeps hanging on. Thanksgiving blessings wished for you and yours.
So Bill....how do you feel when you're off of the ADT during those times? I'd really like to know. And does the cancer get knocked back down when you go back on the ADT and do you go back to the same medication that you were one each time? ? Very iterated
Thanks so very much Bill!!! Good wishes
Jackie
Hi Jackie
In my profile there is a detail of all my psa and testosterone when on and off treatment. I have not been able to go off treatment for several years now. It was on and off Lupron as as mono therapy with casodex for 30 days on restart of Lupron.
In general when I stopped Lupron it took about 3 months for my testosterone to begin to recover. In about 6 months my the doubling time of my psa increases would require me to go back on Lupron. I would begin to feel better in months 4,5,6 but never back to my old self. I believe that this was helpful to me and allowed me to return to work (at a reduced capacity) for a few years.
Everyone responds differently to treatment and this was my experience. Some men can take much longer treatment holidays. When dx'd I was 49 years old and in exceptional physical condition and very active. I believe this as affected how I have responded to treatment. Also being a very type A personality and not willing to just accept what others do or say has impacted my treatment decisions.
Quality of life is a very personal issue. In my case Lupron profoundly changed my life. In 2006 after surgery and salvage radiation I was offered to start ADT but elected to defer for 18 months. I took advantage of those 18 months and really enjoyed my life and celebrated feeling good by competing in all my favorite triathlons including my first iron man race. I felt great during the second half of 2006 and 2007. I often think back to that period with very fond memories. During the next several years I tried some aggressive treatments in a an effort to get away from the Lupron. Unfortunately my cancer did not cooperate. I have experienced almost all of the treatment options at this point.
Wow Bill.....I forgot how much you've been through Thank you for having all of it available to read. It truly is so educating and helpful and even though it helps all of us....I am truly saddened for all that you've been through as I read.
My most sincere gratitude, wished and prayed miracles for each and every one suffering ♡
I also had extreme effects from lucron, and was going to stop after the 3rd 4 monthly injection. How ever I was told about magnesium and able to get dead sea salt [47% magnesium chloride ] and added this to warm baths and soak for 2hrs at a time [trans dermal ]. After a couple weeks it reduced the effects of lucron to a tolerable level and I continued treatment till 3 psa tests of 0.01 and then stopped lucron, and started hormone balancing. Current psa 0.32 T 23.5 At a recent cancer meeting they also recommended magnesium baths, they were using Epsom salts, either form of magnesium should be helpful.
Wow Neil..never heard of this. Definitely something to read up on. So sorry you had extreme side effects. So glad it helped. Do you think a magnesium pill would do the same? Thoughts and good wishes Neil
Not sure if a pill works the same, trans dermal enters the blood stream and a pill needs a higher dose because it enters the digestive system. The effect seems to relax the nerves and magnesium is used by all the cells in your body, it is also a good time to meditate in the bath.
I myself...LOVE the idea of soaking and meditating in the water for 2 to 3 hours. Thanks so much for explaining for me. I know what my next purchase will be Hoping it will be helpful for lg too
Love to you two. Just getting over kidney stones and PSA has been rising more slowly. Big news; 6 yr old grandson just out of brain surgery (4 hrs) and surgeon says all looks good. My Thanksgiving prayers answered.
Sending love back bhammel ♡ Oh how painful I've heard So glad you're getting over them! Miraculous news about your Grandson! So happy all is good and praying for a full recovery ♡ Hope and pray your PSA stays slow!
Sounds crude but we got an orchiectomy almost immediately. We have not have to worry about if the drugs were working or side effects. Obviously joint decision with dear wife but now we know that adrenal glands and the lesions themselves are the only possible testosterone producing sites. PSA has stayed low but Dr. says my PSA is not much of a predictor.
Does not sound crude Bob. Sounds like you both made the best decision for you. Thank you for some insight. Always good wishes and prayers.
Hi Jackie,
I've been on Lupron since '10, and I've had all the side effects available. As you're well aware, we , as in us guys, react differently to each drug. I think it also has to do with, at what age do you find you have Pca? How aggressive it is? And what was the initial treatment.
I was 50 1/2 when Dx. I was in reasonably good health at the time. My Pca was found by chance. I certainly didn't expect a St4 diagnosis. Today, I'm feeling pretty good, considering.
So young to be diagnosed Joe. So sorry for you and all who suffer this. LG was 54 but who knows how long it was growing and festering. The same as anyone else. Diagnosis time is not when it started. So glad it was found even if by chance or luck and I'm so glad that you are feeling a pretty good! Always my good wishes and prayers....I don't think my prayers will hurt ya
I am going to try going 'intermittent" in a week or so. This is my second round of ADT. First one 8 months before surgery. Then an 10 month break until salvage radiation. Now it is is just about 1-year with radiation ending 10 months ago. PSA still at <0.02. I have tolerated ADT quite well this last year with lots of exercise and good diet. Looking forward to seeing if my stamina increases in the months to come. But it is always reassuring to know that I have ADT waiting in the wings if the numbers warrant it. Good luck with your challenges. I know that heavy fatigue is a terrible side effect.
I sure hope you do well with intermittent! Sounds like you're doing well. So glad to here that. Thank you for your empathy...fatigue is debilitating. Best wishes Peter K
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Thank you for having all of it available to read. It truly is so educating and helpful and even though it helps all of us....I am truly saddened for all that you've been through as I read. 
Revisiting Intermittent Therapy in Metastatic Prostate Cancer
Testosterone Recovery During Intermittent ADT
