Introducing us ---

Welcome to the forum! This is the right place to mingle with people in a similar situation. It looks like the chemo and Lupron have worked for you. I have been on Lupron for most of the last 5 years. I do not find the hot flashes unbearable. Maybe I am used to them now.

There are some fairly new drugs for advanced PC which were not yet approved when I was diagnosed five years ago. There are many clinical trials ongoing also.

I am eating lots more fresh fruit now. Just eating better in general. I take a few supplements like pomegranate extract, selenium and vitamin D3. I can't say these have helped but I feel better.

We have 5 grandchildren here, the oldest is age 12. We don't try to hide any of the talk about the cancer if it just happens to come up. They know that for me PC is just part of life. We participate in the Relay for Life each spring. There you will see families with children of all ages supporting the fighters.

And I like you username !

There are drugs that can reduce or eliminate the hot flashes...Ask your Onco about them...The problem is, they all have their own list of side-effects...But maybe you can find something that helps..As time goes on, they slowly subside...The fact that he had a great response to the ADT is a good sign. It means his cancer can be controlled better than some that do not respond to treatment..Start a thread "Hot Flash help" and see what others have done...

hesafighter,

Welcome. Sorry for your need to be here, but hopefully you can get some good input here.

I cannot offer specific inputs on the specific treatment side effects you asked about (because my own personal case has not involved those advanced treatments), but I will offer my comments having to do with talking to children about cancer. In this case, I will draw from my experiences with my wife's case...she was also diagnosed with advanced cancer and she died at age 51.

How much you tell children, and how you should tell them, and how they react...it all varies with age. On top of that, no two kids will respond exactly the same way. But one of the key take-aways from my personal experience is that I'm glad that we brought it into the open earlier rather than later. Realize that advanced prostate cancer does not go away. Some people are successful in living with it, and possibly for a long time, but it requires aggressive and often incrementally increasing treatments.

Realize this, too: Cancer is a (nearly) impossible secret to keep. Whether your child overhears discussion between you and your husband (and they DO hear more than we think they do), or maybe a friend from church drops off a meal (and as his case progresses, there will likely be more of that just showing up at the doorway), or someone comes up to you with no filter or awareness of the presence of your child saying, “I’m soooo sorry to hear…” Or what if your child hears about it through one of his/her friends, after the friend over-heard their parents talking about it, after those parents heard about it from your neighbor in the grocery store. It happens. In our personal case, it was of utmost importance that WE controlled the environment in which our children learned about it.

We searched and easily found reference material online to help guide our initial conversation. I don’t have any of it bookmarked anymore, but google “talking to your children about cancer” and you will find lots of age-appropriate resources. In general, the rule of thumb from the American Cancer Society guide is that all children of any age need to know some of the basics:
• The name of the cancer; prostate cancer
• The part of the body where the cancer is
• How it will be treated
• How their own lives will be affected
Young children (8-12) don’t need a lot of detailed information while older children will need to know more. Teens will have very different concerns than a 5-year old. The age-appropriate resources will help you.

Good luck

http://www.cancer.org/treatment/childrenandcancer/helpingchildrenwhenafamilymemberhascancer/dealingwithdiagnosis/dealing-with-diagnosis-toc

Post Edited (JackH) : 3/18/2016 2:22:04 PM (GMT-6)

Just sending you my welcome and best wishes to you and your husband. Looks like you've been living with this for a while, not that you ever completely get used to a diagnosis like your husband has. But I have seen so many guys here with advanced disease that are leading productive and enjoyable lives.

Re the Hormone Therapy--man, that's a tough one. It ages you. That said, the more you can get out there and exercise the better your husband will feel. Easier said then done, I know, but it does make a difference. Are there any plans for an HT holiday at some time in the future?

Dear Hesafighter,

You've already become warriors on the battlefield --- and I am encouraged to see the tremendous drop you have received in your PSA --- you are experiencing some GREAT treatment success !

We've got some common threads in our treatment strategies --- I've been on continuous ADT hormone shots since my diagnosis when I was in my 40s --- since then, I've also pursued the TAXOTERE chemotherapy treatments --- and now I'm on the medication known as ZYTIGA, to keep my PSA suppressed --- while there have been setbacks along the way, all of these treatments have led to some meaningful successes for me over time --- so I want to encourage you, as you continue pursuing your treatments over time. There's been a lot of breakthroughs in the past decade in the field of prostate cancer --- even the past five years have changed the treatment landscape for those of us with advanced cases !

You asked about energy level while on ADT shots, so I'll start there --- a good, healthy balanced diet and plenty of water consumption is a great first step --- many of us here on ADT hormone shots have also found that some frequent EXERCISE can also boost energy levels a great deal --- best of all, it doesn't have to be anything complicated --- take a stroll around the neighborhood, take the dog for a long walk, work outside in the yard, lift a few weights, log some distance on the treadmill or exercise bike, shoot some hoops with the guys, stop by the neighborhood gym --- whatever exercise you LIKE the best --- in my case, I try to go for a nice walk late every night --- that works for me --- find whatever works best for you. More energy and a great stress reliever besides !

You asked about hot flashes from the ADT shots --- a few quick and easy suggestions --- first of all, keep a water bottle filled with water and ice cubes throughout the day --- even a glass of water by your bedside at night. Second of all --- absorbent, cotton t-shirt underneath your regular shirt is a good strategy for daytime --- I like to wear an athletic cotton t-shirt underneath a long-sleeved cotton Oxford dress shirt during the day --- you can then unbutton the Oxford shirt and roll up the sleeves, with the cotton athletic t-shirt underneath. Cool and breezy ! Works for me !

Some further tips --- invest in a ceiling fan --- also one for your bedroom, if you are bothered by night sweats. You can put double pillowcases on each pillow, as well. Cotton sheets and cotton pillowcases --- just some simple tips to deal with the hot flashes you are experiencing.

You asked about sharing the news of a cancer diagnosis with children --- I'll share a unique perspective that comes from a different angle, but I think that what I share might give you some keen insight. I'm an elementary school teacher --- I was diagnosed shortly after the school year began in 2013, out of the blue. I hadn't missed a day of school in many years. Suddenly, I was being scheduled for tests, labs, diagnostic imaging, and consultations --- then a confirmed diagnosis of advanced prostate cancer. What to do ? How to handle this with my 25 young students --- plus the 800 other youngsters that all know me well at my school ?

Working together with my principal, the school board, and the school guidance counselor --- we all put together an informational message that was sent to all the parents of the students right before the weekend. The message informed them of my cancer diagnosis, and asked parents to discuss this with their children during the weekend. Since my building is filled with young students, we simply informed the families of my diagnosis, let them know that my doctors had my case well in hand, and that I had every intention of being there with my students every single day, except on days when treatments were scheduled.

On the following Monday, the principal and school guidance counselor visited every classroom and factually discussed my diagnosis and stated that it was my strong intention to continue teaching, just as I always had before. I was there teaching the entire day, interacting with all my students, as the news was shared with my homeroom class. At that point, I set my sights on reaching the milestone of teaching 25 years --- and just last spring, I met that milestone, and I'm still going strong. I'm grateful for that, every single day.

You're facing this question in your home --- I faced this decision with 800 children. Here's a key point that I will never forget and it might help YOU in your decision-making. My principal said, "You've always been determined to meet goals in your classroom. This is some unexpected news, but you have a unique opportunity here to perhaps inspire others --- to show young children that you can continue to TEACH, even though you are facing a critical illness --- and you can show all these young people that you can continue to LIVE, even with cancer." WOW ! My principal's words were wise --- his words still resonate with me, even today --- I've taught with cancer now for three school years and still have 100% of my drive and energy --- and my heart is filled with gratitude every day. I pray for others in my situation every day, and we're all in this fight together.

My principal also shared something else with me --- he reminded me that we had young STUDENTS in my school building who were also facing a cancer diagnosis --- he reminded me that I had a special opportunity to share a bond with them --- to connect with them --- to share hope with them. Believe me --- I have a strong bond with all those kids. EVERY single child in my school has been supportive of me --- in the hallway each morning, I greet every child I see and we all know each other --- my day begins and ends with high-fives, hugs, and fist bumps. The drawers of my desk at school are filled with hundreds of cards, notes, letters, and valentines from school kids. Tremendous support !

This is the pathway that my life has taken since diagnosis --- I think that including all the school children in the news was an important step --- for them, and for me, in return. My students and I have even worked together on some charity projects to benefit the students in my school with cancer --- and also some meaningful projects to help other children who are being treated for cancer at Blank Children's Hospital --- projects that have brought toys to those young cancer patients, new library books for them, and funds to support the work of the children's hospital. My students are more mindful of their classmates now who are facing ALL forms of critical illness --- these projects are meaningful beyond all words to my students ... and to me. I feel that I have learned tremendous LIFE LESSONS in all of this ...

I believe that cancer should be simply a chapter in my life's story --- and not the title of my BOOK OF LIFE. All my students quietly know of my diagnosis, but it's never the focus of our school day. I work hard every day to be the TEACHER that I have always been ... without reservations, without limits. I'm out on the playground with them every day --- in the grass, the mud, and the snow --- in the midst of their football games, soccer games, basketball games, and kickball games --- all of us having a great time together. My school kids are very important to me --- they ARE part of my journey, just as I am a part of THEIR journey --- they know I would do ANYTHING to help each one of them, and they would do the same for me, in fair return. We ARE all in this together ... from my perspective. I hope something in my experiences will resonate with you --- some life lessons I have learned along the way, in unexpected and meaningful ways.

As a teacher, I think it would be beneficial if you informed your child's teacher and the school guidance counselor, just so they can have that insight. You don't have to share personal treatment details, lab numbers, or any of that --- but it WOULD be beneficial for your child's teacher and school guidance counselor to know that your child has a parent facing an illness. Your child's school can play an important part in supporting your child, as your treatments continue over time. Teacher's point of view to share with you !

Over time, I see that each one of us facing a cancer diagnosis forms "teams" of support all around us --- the first TEAM should be your family --- you need everyone rallied together, sharing support for one another. Children are wise --- they sense things --- so the sharing of basic, factual information is probably a good first step.

Beyond the family TEAM --- other teams of support emerge --- the team comprised of friends, the team comprised of neighbors, work colleagues, church members, community members, classmates, and so forth --- all lending SUPPORT and understanding.

It's great that you have posted --- you are going to find support here --- we've got members from all over the country, and valued members from across the globe, as well ---

Keep sharing your story with us, over time --- let us know how you are doing --- let us know how we can help you ---
we're here for moral support, a bit of advice, friendship, solace --- all of that, and much more.

Sent with all my best,
"Iowa State Cyclone Fan"

Welcome. Thank goodness he has you and your wonderful daughter to help him. Excellent initial response to a very tough situation. That usually contributes to along and durable control of the cancer.

Children are much more resilient, more understanding, and much more intelligent than we think. Working with her through this is much easier than dealing with the hot flashes. Just like anything with our children...honesty and love and demonstrating the life you want them to emulate.....that's how you do it. Just keep it simple and real. She is an integral part of the team....make sure she feels that.

As to the hot flashes.....I suffered....my wife suffered more. Diet and activity did more for me than anything. Reduce meat, increase plants, reduce carbonation and caffeine and alcohol.....increase all forms of activity....and turn down the thermostat....and learn how to relax and meditate. My doc gave me megace ( megestral). Supposedly it helps but is an appetite stimulant. As if the Lupron wasn't enough I was ready to eat my shoes!! That didn't last long. No good solutions, but I found diet and exercise to be the best.

In spite of your dx, I can't think of a better time to be treating this affliction. In the short time I have been treated, the advances are stunning for the advanced high risk men. I trust you are with a very good oncologist and it looks like he is pulling out all the stops. We have many men on the forum that are in your shoes and are doing wonderfully well, I trust that you will as well.

Best wishes,

Jack

Welcome to the forum ... I see you've gotten a lot of good advice from our group, so I won't repeat it.

One thing that helped me get through the 3rd year of Lupron/ADT was a cocktail my psychiatrist recommended of Wellbutrin, Cymbalta, and Adderall along with some supplements ... It gave me enough brain neurotransmitters and stimulation so that I could keep going. For us younger guys with families and who plan on sticking around a while, it's an important part of quality of life that is overlooked by doctors who specialize in the cancer side of things.

Obviously, each person responds to such drugs differently, but in a Low T state it's hard for us to muster the determination to find a way to improve our moods/energy.

Blessings,

Ray