Advice welcome

[Kg83]

Hi everyone , maybe this is a strange post I’m not sure my dad has been told he has advanced prostate cancer and im devastated. He is stage 4 , psa level is 78. It has spread to lymph nodes and possible t1 on the bone . He is 58 years old and generally very healthy and active . He has started hormone tables and is waiting for cemo. I’ve spent days researching what I can do to help with diet or cbd . Please can anyone advice me on what helps them and what I can do to prepare him for cemo and after. Also how long will I have him for as he doctor said it’s not life threatening .., but what does that mean ? Thank you kerry

[JamesAtlanta]

Hi! Sorry about your dad ...

Being diagnosed with advanced prostate cancer is a real shock. We’ve all been through it. Take a deep breath and do exactly what you are doing ... take time to educate yourself. This forum is a great place to ask questions.

First and foremost, make sure your dad is seeing a medical oncologist that specializes in prostate cancer. Not a generalist oncologist (someone who treats lost of types of cancer). If you have not seen a specialist yet, I’d see about getting a second opinion. If you let us know what city (and country) you are in, someone may be able to offer you a doctor or hospital suggestion.

I don’t understand what a comment like “it’s not life threatening” means. Advanced PCa is very serious. The good need is there are lots of new treatments available.

If you search old posts on this site you can get a lot of advice regarding what chemo is like, recommendations from patients like myself that have been through it to minimize the side effects, etc. Since your dad is apparently young and healthy, it should be very manageable ... not nearly as difficult as most of us imagined.

The Prostate Research Foundation is a great information site. It explains the various stages of PCa, the latest treatments, and suggests diet and exercise recommendations.

I’m sure others will offer advice, too.

Glad you found us ... we are here to help each other!

Best,

James

[Kg83 in reply to JamesAtlanta]

That is the thing,I do not understand the comment either , I feel it was a very throw in the wind comment . my dad is very happy with it and keeps repeating the comment but I can’t Help but feel dread as he seems to be ok...... do you bring the one you love back to earth or let him live feeling less pressure ?

[Caring7 in reply to JamesAtlanta]

Ditto on finding at least a consulting prostate cancer specialist to work with a regular (all kinds) medical oncologist. But -- your dad is definitely getting the standard of care with early chemo + hormone reduction, so that's going right.

"Not life threatening" is a strange way to put it, a glass half-full approach (not inaccurate) -- because there are lot of treatment options, and I think he's emphasizing that he is not going to face death any time soon. That said - as noted, it's a serious condition, and he is more likely than most other Prostate cancer patients (diagnosed at earlier stages) to die of the disease, eventually. Try to consult with a nutritionist with the chemo treatment, esp. with diabetes factor. It is a single-drug chemo (usually) -- taxotere, with kind of typical effects, but for my husband (at age 52 with excellent otherwise health) it went OK. That day tired from drugs around the chemo (like benaryl). Then usually fine a few days, then day 3-5 somewhere, wammo! exhausted! You will figure out the "nadir" days and he should plan to rest. Other than 1-2 days off during that time, my husband continued working. It does get progressive, too, so by #5 and #6 it's a little more intense, but there's also the "end of tunnel" effect, which helps.

Keep researching. Do try to find someone expert in Prostate Cancer. That person can provide a good overall view of things and work with your regular oncologist on a good plan. Good luck. It's a long fight but -- long is good! And as you'll see here, with down periods for treatments, many men live long good active lives with even a stage IV diagnosis. 4+ years out, my husband just rode a 100-mile "century" bike ride.

[Hidden]

Many of us here have been diagnosed with stage 4 prostate cancer so we know the shock of getting the news. I'm sorry he has also had this experience, but prostate cancer is one of the most treatable cancers, even at stage 4. Hormone-based treatments are around 90% effective. When combined with chemo, they offer greater overall survival time. He could be around for many years. You can't know for sure, but there are many here that have been living with stage 4 for a long time. There are quite a few good treatments available.

I was diagnosed almost 2 years ago with stage 4, PSA of 463 and many mets. I did the hormone treatment (androgen deprivation therapy) and also chemo. I'm currently taking Zytiga. My PSA at last check was 0.1 and I am pretty much free of pain now. I just went to Europe for a month, walking 1-3 miles every day.

I wish the best for him, try not to lose hope. The potential for a long remission is good for him. Good luck and let us know how he is doing.

[Kg83 in reply to Hidden]

Wow Gregg was it the cemo and the hormone tablets that helped the psa Levles come down ? Sorry if I get it all wrong just trying to understand it all x

[Hidden in reply to Kg83]

I was getting Lupron shots and also 6 cycles of Docetaxel chemotherapy. It may have been a combination of the two that got my PSA so low. One advantage to chemo is that it can kill cancer cells that are not dependant on hormones so it kills a broader spectrum of cancer cells, including ones that don't produce PSA. I did the chemo because I wanted to get the best possible chance of a long-term remission. It's hard to know exactly what specific role the chemo played in my response. I think it's best to just throw what you can at it and know you doing the best treatment you can.

[Hidden]

Thanks!

[Hidden]

Welcome Kg83.. 58 is not old .. He can live for decades if all goes right. What Dr or what type of dr was this that said #4 is not life threatening?? hopefully he meant that dad is not in immediate threat of death at present.. You are being his seeker. You can learn more than you need to know here about treatments..if #4 ain’t life threatening , why is there no stage five.. It was a wake up call for me at 53 and your dad at 58.. We now k now the fragility of our very existence .. Get him thru treatments and recovery.. He will be weakened by this. Stay by his side .. Love and compassion will see him through this new lifestyle.. You must check yourself at 40. My dad had Pc. And I was supposed to check at forty but fought my way thru irregular peeing for some years until

I stopped peeing all together.. nobody wants to go there.. I’m in a better place now . I hope the same for your dad. Eating right and exercise both help.. Good Luck!

[Kg83 in reply to Hidden]

Hi ya , thank you for your answer . My dad has also stopped pee all together and now has a valve . Will that change if yeh pea levels go down or are we always looking at using the valve x

[Hidden in reply to Kg83]

I’m sorry , I didn’t have that and don’t know the answer. Sucks, my dad had this also.. I felt horrible for him. I wish I had a don to help me .He is lucky to have such a son.

[softwaremom00]

I agree with JamesAtlanta in finding him a good medical oncologist who specializes in prostate cancer. I think the actual term is Genitourinary or GU. A good place to start near you might be the closest teaching institution.. like a University Hospital. I would ask for a consult with an Integrative Doctor. They can help your dad integrate other things into the plan. I think exercise really helps with the hormone treatment.(It seems to help my hubby).

Also a lot of the guys here have done quite well with treatments for advanced Prostate Cancer.. so do not worry about an expiration date..

Lots of Hugs and Prayers for both of you!

[j-o-h-n]

to Kg83 (Kerry),

You've come to a great place here. Lots of knowledge and help. Lets us know where you're located because sometimes you can get recommendations for good doctors and hospitals in your area.

Good Luck and Good Health.

j-o-h-n Sunday 10/14/2018 3:38 PM EDT

[Noel91]

Hello Kg83. I al sorry for the diagnosis and I understand you are devastated,this is the first feeling we all had.I barely left home when my dad was diagnosed but I see everything different now.You Will find a lot of support and knowledge in this site.

First,looking at diagnosis your Father is considered Oligometastasic.Before Chemo I Will go with Zytiga and Predisone that improved survival in low volume metástasis. Check Stampede Chaarted and Latitude.In case he has the bony met may be It could be zipped with SBRT.

Of course find a good MO and ask here everything you wonder yourself.There are loads of people due to help you.

Sorry for my English and I Hope you Father feels Wells despite of diagnosis.

Noe