Advanced Prostate Cancer

New diagnosis

New on site. Been reading for awhile and appreciate the positivity and information.

My husband and I flew in from the Caribbean on December 18. He was experiencing back pain. Went to ER on the 22nd. Received diagnosis of stage 4 PS. PSA 59 with extensive metastasis to bones. No other warning signs.

ADT shots have begun. First chemo with Taxitere to begin next week.

We have enjoyed a busy and active life with few health problems. This feels like slamming into a brick wall. Worried.

38 Replies
oldestnewest

Glad you found our site...but sorry for the experience you and your husband are having to go through.

As you’ve seen, our group is incredibly supportive, knowledgeable and helpful.

While no one wants to have PCa, there are so many positive stories - and hope! There are also so many new treatments available today than just a few years ago. And more in the pipeline.

We are all pulling for you both. Please don’t hesitate to ask questions, seek advice, or just share worries. We are all here for you. Best of luck on your journey!

James

5 likes
Reply

Thanks, James. The kind and caring comments as well as the knowledge from experience are what drew me to this site.

3 likes
Reply

Sorry about you having to be here, but you will never find a better place. Your best tool is knowledge. To that end, here are some references that may help.

The Prostate Cancer Foundation has a great booklet that you can download. You can find them at

PCF.org

The American Cancer Society also have good information on prostate cancer. They can be found at

cancer.org/cancer/prostate-...

Here is a reference that focuses on advanced cancer (like I have)

uptodate.com/contents/treat...

In addition to information support is critical. We are here for both of you! You are part of our family! Please remember that you will never be alone. Remember, people like us we have to stick together!

9 likes
Reply

Thank you for the links. We are reading and researching. The kind support matters so much.

2 likes
Reply

Please know we have your back.

3 likes
Reply

Welcome aboard the train where there are many passengers. Lots of knowledge, and support you will find in the Dining Car. Not to make light of your situation, but the initial care given will be of benefit. Stay tuned here and much support and love are for you to have.

Nalakrats

4 likes
Reply

Trying to make good, educated choices. Feel like we need a medical degree in one month!

Reply

Be sure to read through the old comments too lots of good info on ADT experiences and how to minimize side effects

1 like
Reply

Very sorry to hear about your situation, but so glad you found this group. When reading your story, I was reminded of my own one year ago. I had no symptoms other than pain, I'd even had a recent CT scan and my doctor specifically told me my prostate looked normal.

I also followed the same course of treatments that you are. Started on ADT and Taxotere chemotherapy a month later. At diagnosis, I had extensive bone "mets" with lots of pain and a PSA of 463. One month later, my PSA was 12 and I was pain free. My PSA continued to go down to .19 over this past summer. It's still under .5 at last check a month ago.

You are following an excellent course of treatment, one that has worked well for a lot of people, including myself.

We all here wish the best for you. I hope you continue to participate in this great group of support. Keep us updated on your progress, we are all pulling for you.

5 likes
Reply

Oh, thank you for those words! We feel unprepared for such decisions. Did you manage the Taxotere ok? Any tips?

1 like
Reply

Hi MimiY,

My husband is dealing with advanced prostate cancer. I understand how hard and scary it is to hear that word.

Cancer hasn't stopped him all these years from traveling and doing the things he loves. Yes, things have changed, but he's still with me and that's what's important. He's now on a very agressive treatment with Lupron, Zytiga and Prednisone plus chemotherapy ( Taxotere )So far so good🙏 I feel our lives are on hold right now, but we are trying to enjoy and appreciate each day.

There's hope. You are not alone.

I'm still learning from these great men on this site that have been a blessing to me.

Sincerely,

Erika.

7 likes
Reply

So nice to hear! It is so scary. Really had no encouraging words from the "professionals". Nice to find them here. Good luck to you both.

4 likes
Reply

Like gregg57 said, pretty soon after starting chemo the pain will start to fade and a few sessions in he will feel better than he has in awhile since the cancer was sliently growing. Im on round 9 and besides some hormonal side effects from the ADT, i feel really good. Im 55, and i do thing us young guys handle chemo well.

4 likes
Reply

Something to look forward to.

Reply

Remarkably similar. Dxd with Stage 4, pelvic girdle lymphs gone, seminal vesicles too. Over 40 bone Mets spine, hips, ribs, chest and scapulae. No prior symptoms but Docs said must have had disease 2/3 years before DX because of extensive spread. PSA 200. Now no Mets, PSA runs at 0.03. There's more than hope, there's life. Like me you'll find more than information on this site you'll find love from the northwest and sisters that have helped me and my family understand and grow stronger. David

5 likes
Reply

Thanks, David. Our son's name, by the way. I know it must have silently been there.

Reply

I actually wrote....'love from the brothers and sisters'.... I was 72 just 2 days ago. All the best and God Bless.

3 likes
Reply

Welcome. Yes, it is a really big shock to get such a diagnosis right out of the blue. I remember when I went to an ER in very great pain to my lower back and abdomen in Nov 2013, and the shock of getting the Stage IV prostate cancer diagnosis at age 65, with a Nuclear Medicine Bone Scan that lighted up like a Christmas Tree, and a ridiculous PSA of 5,006. I went on ADT with Lupron with an added drug for bone health, and my pain melted away within a few weeks, and my PSA went down to 1.0 within 7 months. I've gone on to do some other treatments since, but I'm still here 4 years and a couple of months later, with a current PSA of 1.7. Just starting out, there is lots of room for Hope, in addition to all the fears and anxieties that the new medical realities can stir up.

Sounds like you are already on a path to get one of the best treatment regimens at his stage and diagnosis, i.e. ADT + Early Chemo with Docetaxel (Taxotere). Hope you have good results from it, too, along with several of the others here (like Gregg57) who have done it, too.

The men and the caregivers are certainly all on their journeys together, here. You will continue to have about a zillion questions and new emotions during the next year. This is a great place to share them with others who "get it".

Charles

5 likes
Reply

Found out today that PSA has gone from 59 to 8 after 1st ADT shot. Yes, this cancer has happened to "us" and HOPE is what we need. On to Taxotere next week. Thanks for the words of encouragement.

Reply

WooHoo! It's working.

1 like
Reply

Woohoo! is right!

Reply

Hi MimiY,

My husband diagnosed with stage 4 prostate cancer Jan 2017, so I can understand the worry that is going through your head now. It was a tough first couple of months trying to come to terms with the diagnosis and the treatment that was ahead of my husband - I found the best way of dealing with it was to try and found out as much information as I could about prostate cancer, and about the treatment path that lay ahead. My husband found it easier just to take it day by day and deal with whatever was thrown at him, but if he wanted some advice or information he would ask me to help or look into it. He has dealt with the treatment well ( 7 cycles of chemotherapy, hormone therapy and recently tomotherapy and cyberknife radiation ), changed his diet and lifestyle habits fairly significantly, but the main thing is that he now appreciates every day that he has with his family and young daughter. His Psa is currently 0.56 ( from 72 ), the bone mets in his rib are stable, and life is continuing.... We are shortly about to head off on safari with our little daughter for the first time - it is important to always have something to look forward to and to try and remain positive throughout.

There will be tough days, but the treatment options are so good now that there is plenty of reason for you to be looking forward to plenty more busy and active years !

Take care X

5 likes
Reply

So nice to hear! A safari! It's a whirlwind of appointments and decisions right now for us. But we remain positive thanks to people like you.

Reply

Good Morning MimiY,

I have been in this battle for 5 1/2 years (please see bio for treatment history).

Several things about Docetaxel:

1. It can cause permanent peripheral neuropathy in hands and feet. My Med Onc recommended daily oral 100mg B6 to mitigate it. I also iced my hands and feet for the 1 hour Docetaxel infusion.

2. Nausea can be controlled with infusion of Aloxi before any other infusions.

3. My Med Onc prescribed Dexamethasone the day before, the day of, and the day after chemo.

4. His white blood cells will take a beating. I left with an On Body Injector of Neulasta.

5. I added Wisconsin American ginseng daily to reduce fatigue, which will become a major side effect. Google Mayo Clinic and ginseng for trial description.

All in all, it can be managed. Does he have a port? A port saves the veins in your arms.

Best wishes. Never Give In.

Mark, Atlanta

4 likes
Reply

Thanks for the tips. Getting port on Monday and first chemo 9 on Tuesday.

Reply

Sorry to hear about your husband’s diagnosis, and your fears about his diagnosis. I know at first it is scary, and you sort of get into a panic mode, as you adjust to your “new reality.” But, on the plus side, it sounds like you are off to a great start on the treatment protocol. I was Stage 4 at diagnosis 3 years ago, , oligometastic with one tumor on the pelvic bone, which has somehow managed to disappear on my most recent PET scan. I have been on 6 month Lupron/Eligard, and just had my 4th of 6 chemo infusions with docetaxel. My PSA continues to be undetectable, and testosterone 7. The side effects of both the ADT and chemo can be annoying, but tolerable.

We are all riding the same train, but in different cars, since our personal situations are all just a little different, and we as individuals react a little differently to our treatments and their side effects.

As difficult as it may be at this early point in your husband’s treatment, keep the faith and try to keep a positive attitude. We all have the option of wallowing in our self pity, or saying “ it is what it is, Now let’s do battle with this monster.” Be proactive in researching the disease and your treatment options.

You are never alone. You have lots of support, prayers, and concern from the wonderful men (and their spouses and caregiver children) here, many of whom are very knowledgeable about PCa, various treatment protocols, alternative and holistic treatments that can be used as an adjunct (but never replace) standard treatments and drugs, to relieve pain, help deal with the side effects, and improve the efficacy and duration of your standard treatment. Some members of our group with a Stage 4/ distant Mets diagnosis have been living, with an altered but still good quality of life for 10 years, so don’t freak out when you read the gloom and doom statistics. They are obsolete. More new treatment plans and drug combinations have come out in the past 5 years than in the previous 40, and more are in development and clinical trials.

Best wishes to you and your husband as you start your journey. We are all with you!

6 likes
Reply

Wow! Just wow! Such encouraging words. Beginning to feel like we can do this.

Reply

Hi Miniy, my name is Lynn, sorry to hear your husbands diagnoses. I remember that day when we were given the scary news of my husbands cancer, stage four., that's been nine years already. There have been a few bumps in the road but all and all did well for the nine years. Your husband will do just fine, my husband had the chemo this past year, he had a little bit of a hard time with the nausea, but that was the worse part for him. Sam started at age 65 and is now a 74 young. I wish maybe looking back that he would have had the chemo from the start, I'm hearing that the men that get it early do much better later on? I was happy to find this site, it really does help to know so many are all pulling for each other and really do care. Take care and hang in there. Best wishes coming your way. Keep us posted.

Sincerely, Lynn Pa

5 likes
Reply

Thank you. Glad to hear that Sam is doing well.

Reply

Hi Mimiy, I think I spoke to soon, lymph node removed, was told 3days for biopsy results, called dr. She said not in yet should be here in ten days, we go for our app. With her and now she tells us biopsy results Won't be back for three weeks . Something to do with insurance,? That the hospital is not allowed to send out the LN until five days after surgery We have good insurance. I am So confused, left our appointment very upset. The more I thought about it, it sounds crazy to me.?? Now three weeks??? Sam's PSA before surgery was 17 this past week it's up to 56. The dr. Did mention another chemo, but she said it's very harsh, more so than the taxotere Sam had, she hoping when we ever get the biopsy results that he will be Will be a eligible for that drug Keytruda they advertise on TV for lung cancer but now they are seeing it's pretty successful for late stage prostrate cancer. Keeping my fingers crossed.

Happy to hear your husband is responding well and the new treatments developed everyday,

Thank you for your well wishes and keep us posted. Sincerely, Lynn

Reply

Three weeks! Sorry for your frustration and I certainly understand that you would be upset.

Reply

Mimmy. Yes the final straw before my diagnosis was a sharp pain in 5he back especially when breathing. Have underwent 6 rounds of Chemo with Taxitere, plus bone shot, lupron and Xgeva. 18 months into it. First couple of chemo are rough. But the day after shot was the real rough one. Hang in there it could be worse.

Reply

Someone else mentioned the bone shots were tough. Yes, back pain was what started this for us too.

Reply

Hello MimiY,

As I've said before, this site is like Allstate, You're in good hands.

Don't let your Husband's Pca keep all of you from living a full and wonderful life.

Good Luck and Good Health.

j-o-h-n Thursday 02/01/2018 6:36 PM EST

Reply

I hope we will gain some footing and be able to settle in to some normalcy. We have a Happy and blessed life.

Reply

Welcome from the Caribbean! Sorry for the circumstances.. May your husband live many many happy years. This isn’t an immediate death warrant. Treatments , suffering, but he should live.. we all must make the best of everyday. Many should answer you. I want to encourage you to be well yourself . It’s incredibly stressful where you are at now. We have all been there. I’m doing well, after treatment and a complete lifestyle change. This means that I ve only jumped over the primary hurdles . There is nothing easy about this for either of you ..about what we all must must go thru to live with APC . With you and love he has hopefully many reasons to live.. Is going to be an assault ,but you can get him thru .

Reply

"an assault" Exactly the correct description. The stress level is so high right now. Hours and hours of tests and appointments! But we will face this and hopefully things will calm down soon. Feeling pretty exhausted. We are, however, hopeful. We are a good team and we will make the best of it.

1 like
Reply

Its just the beginning and admittedly it’s overwhelming My wife saw me thru hell. If not for for her I wouldn’t have made it. She selflessly waited on me for a year of brutal circumstances.Together I made it to an all clear no PSA. You can do the same hopefully. That’s the goal and the light on the other side of treatments and suffering. We APC patients will never be cured but many have lived with APC for a decade some for 2 and a great man yesterday told me 25!ys and going strong .Eat well try to get some sleep and breathe deeply .You will need much strength . Once you pass the initial fear then you’ll be occupied with his treatments and recovery Once aggressive we must fight fire with fire . You are not alone in this. We all go thru the almost exact experiences. We pray for positive results ...

Reply

You may also like...