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Advanced Prostate Cancer
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New to group. Encouraged by the posts I am reading.

New member to this group. Diagnosed in 2005 at age 52. Psa 7.4 and GS 9. RARP followed by 11 years of undetectable psa. 2016 psa began to rise and reached 2.4. Have been on bicalutamide/finasteride and psa dropped to 0.7 in 8/2017. Psa now at 1.2 and has me worried. Another psa next week. Ct/bone scans show lymph node involvement in pelvic area and supraclavicular nodes. Current treatment has me so fatigued and need to keep health insurance so need to work until eligible for Medicare. Finding it hard to keep my usual cheery disposition.k

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If my math is right, you're now 64. If you're otherwise able, could you retire and keep your health insurance through COBRA? Good luck with your PSA. My med onc usually wanted to see 3 rising PSAs before changing therapies.

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Hi PapaDugi!

I wanted to welcome to the group! I’m sure others will have some ideas/suggestions that might be helpful given your current treatment.

I know the sense of constant worry, as my PSA is rising right now, too.

But I have always had the belief that the only think one can control is your attitude. So I’ve always had a good one and don’t intent to let PCa change that. You sound a lot like me, so I hope you don’t give in. 😊

I find that exercising helps tremendously with fatigue. Are you able to do that? Even just walking a couple of miles a day makes a big difference.

Anyway, wanted you to know we are all here pulling for you! And I know many of us will try and help any way we can.

James

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Thanks James. It feels strange to not have the positive attitude that I usually feel. Constant worry in the back of my mind has to go and I need to more actively “live in the moment”. I appreciate your support

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Thanks for the warm welcome. Will wait for next psa before talking with the oncologist. Cobra is an option that I may explore. I’m going to really commit to the exercise and see how I feel

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Hello PaPaddugi, I wanted to ask you during the 11 years of no PSA detection was there any kind of preventative maintenance or change of diet of less carcinogenics, like sugar? My PSA was 7 when I did my biopsy and Gleason 8 last PSA was .4 and I start my radiation tomorrow for two months. the last 4 days I have basically reduced my sugar intake to 0 except carbs trying to keep that low too and less fruit before my radiation treatments start ,to make sure the cancer can't feed real good , there was a posting on HealthUnlocked that mention sugar can increase the rate of tumor growth. I read that it can also feed off of fruit sugar,(fructose) , I really believe man made sugar is the culprit of most diseases especially cancer. I was born in 1950 and from that date till now processed food as always been around for me, I remember my dad told me when someone got cancer when he was a teenager it was rare. its mostly our food that is creating our disease.

the reason I am talking about food intake is when I was first diagnosed with prostate cancer I was fearful that I wasn't going to make but when my urologist told me I caught it early, I felt safe and didn't think about anything but doing radiation and getting rid of the nodes in my prostate, so I ate anything I wanted but after reading the post here about sugar , I did more research I am so glad to be here reading all the post because I have learned so much about all the protocols and new ones everyday gives me hope that one day soon they will eventually get it right. I would say keep reading all the post of others like us and learn all the ways to hit it hard, it seems to be working with new protocols and combinations of protocols.

Prayers for all us here to stay diligent

God Bless

Robert

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Robert, I didn’t make huge dietary changes but I used to run quite a bit, and I would tell myself don’t ruin it by eating a cheeseburger or a bowl of ice cream. And that made it easier to eat a more wholesome diet. Best of luck to you.

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Good Morning PapaDugi,

For your fatigue, you may wish to consider taking Wisconsin American ginseng. Google Mayo Cilinic and ginseng to view results from a trial they conducted some years ago. I am undergoing chemotherapy with Docetaxel and Carboplatin and with my Med Oncs ok, have added this particular brand of ginseng to my daily pill regime. Dr. Mark Moyad, who is a recognized expert in good and worthless supplements, also recommends it.

I am not going to wade into the sugar controversy, except to say if you Google the top myths about cancer, you will get scientific explanations from leading cancer centers. Draw your own conclusions. If it were only so easy to cure....

Best wishes. Never Give In.

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Thanks for the advice. I’ll give it a try

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A warm welcome from my husband Paul and me.

Oh we really understand what you mean by saying you are fatigued and that there is a constant sense of worry in the background. This worrying is tiresome in itself not to mention the physical side of things!

We hope that you will find good support in this forum. We certainly have found support here.

How about trying to do some meditation? There are great mindfulness meditation teachers out there and the practices, or even listening to their talks, can really give strength. We are doing it a lot. Have a look at

tarabrach.com

She might be familiar to some of you here.

Mel.

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Thanks for the advice and encouragement Mel. Tara Branch website looks interesting.

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Ginseng seems to help my husband. We use two different kinds.. We use Solgar ginseng(19$ a bottle on Amazon) and ASIAN PANAX GINSENG KOREAN CAPSULES - ($36 a bottle on amazon) the more expensive one we save for the days he is really tired. Also try to get your oxygen levels up in your blood stream. It seems to help my husband.

We are taking a mindfulness meditation class and it is enormously beneficial. It teaches us to control our thoughts..(In a nutshell)

Gotta go, little boys need me.

Blessings, Prayers, and hugs to you!

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Thank you

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PapaDugi....

Cheer up and F.P.C.

Good Luck and Good Health.

j-o-h-n Wednesday 10/25/2017 5:55 PM EST

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I’m starting to cheer up. And yeah FPC! It took me a minute or two to figure that one out.

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Hello Papadugi

The weakness and fatigue that accompany hormone therapy is called "sarcopenia". It has been studied quite a bit and repeated studies have shown that exercise is a good treatment for it. When I was on Lupron and still working I would run on a treadmill. It was hard. I could just manage a slow jog, and not all that far compared to what I could do before the Lupron. However it worked. I was able to do my normal days at the office with no problem and even took five mile hikes in the woods with my wife with no problem.

I agree with JamesAtlanta. Start exercising. You may have to build up slowly, perhaps just walking at first, but keep adding to the distance. Bring an mp3 player and listen to music or books if that helps. Also, a little extra sleep at night, even if just a half hour, can also help.

I think if you work at this you'll find a major change in just one month. Who knows, you may even want to keep working after 65.

As far as your future treatment, I understand your depression about it. If you're not now seeing a real prostate cancer specialist, I suggest you find one. I always recommend the teaching and research hospitals, as for example on this list:

cancer.gov/research/nci-rol...

Ask about combination therapy - e.g., ADT + chemotherapy, or Lupron + Zytiga. They are now believed to provide significantly longer life extension than using one and then the other.

It's a real bummer that your cancer has returned. However I have seen numbers of men who live 20 years or more on the current drug therapies and, with exercise, good diet, and a positive attitude have made those good years, not years of fatigue and depression. Furthermore, new therapies are in development and there is a good chance that, if you can make it just five or ten years, there will be more treatments available that keep you going into old age.

I wish you the best of luck.

Alan

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Alan,

You gave some great advice. You are a credit to the forum.

Rich

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