Stage 4 diagnosis

[meemsie]

My husband was diagnosed with Stage 4. He is 77 years old. Gleason scores were all 9/10. Bone mets to ribs, spine & pubic bone. I understand this is an uncommon diagnosis?? On Lupron, Xtiva & Xgeva. I noticed his ankles are swollen & some days his color is very pale sometimes gray. Can anyone educate me on what to expect?

[Kaliber]

Hi meemsie ... you didn’t say what your husband’s PSA numbers were. Off hand in my limited experience, I don’t see anything unusual about your husband’s diagnosis. He has prostrate cancer, that’s unusual I guess. Still my diagnosis is just like his but far worse ...way more mets .. and a large number of guys here are in the same boat. The PCa is metastatic obviously, that’s what makes him stage 4.

His adt meds are typical of large numbers of guys here ....pretty much each guy is different. Some guys ( me ) have an extremely rough go of it with adt, but most don’t. It’s a milder , often unremarkable experience for most guys. There are some standard side effects like changes in genitals and breasts , tiredness etc. it is chemical castration after all, but most guys work right on thru it . It’s going to be hard to say until he’s been on it for 6 months or a year or more , probably. Getting as much physical exercise as possible is one of the important aspects to keep the side effects minimal. I’m sure the other guys here will have a lot more to contribute.

Based on what you have said, everything sounds pretty much fine .... so far doesn’t sound like you have to worry ... seems just like a whopping lot of guys here in the same boat. Let’s wish him good results in his adt treatments and many more years of life for him - the both of you , ahead.

Best wishes meemsie 💪💪💪💪👍👍👍🌻🌸🌈❤️❤️❤️

[meemsie in reply to Kaliber]

Thank you so much for your responses. I think I need to stay off the Internet. He started his treatment in April and seems to be tolerating the side effects at least as far as I can see. He does not like to discuss much which is frustrating but I’m trying to be supportive. Balance is definitely off. His PSA is at 0.8 right now but did go up to 1.08 and he freaked out thinking that it jumped. I guess this is a roller coaster ride with ups and downs.More bloodwork and scans in another six weeks but in my gut I feel that he is stable for now. Is it possible he is his own worst enemy? Also… Is it possible for PSA to stay low but for new mets to keep appearing?

[treedown in reply to meemsie]

Definitely a roller coaster, let's hope its a very long ride. I hate roller coasters.

[Kaliber in reply to meemsie]

I stumble all over the place and can’t even walk because of Lupron Xtandi . Yayahahahaya 0.8 psa is pretty good. As with all things PCa , it best to talk first to your medical team about things like psa staying low with met spreading. Tall_allen’s advice is always good advice as well. I get blood tests every 4 weeks and don’t get scans anymore. They told me I have so many mets that additional scans wouldn’t provide any useful diagnostic information. Your husband sounds like he is fairly stable and doing OK ...... that’s all any of us advanced stage 4 guys can hope for ... I think he can relax a little for now until he gets different info. “ Right now “ is all that any of us guys actually have and “ right now “ he seems OK considering.

How kewl is it that you are here asking and being so supportive of your husband , he is a lucky guy ... it shows you are a concerned and very supportive wife. He is lucky to have you at his side.

[Concerned-wife in reply to meemsie]

This site has been very helpful to us. We try to focus on what the recommendations are from recent conferences and NCCN and the European group. It seems, however, some internet sites show a shorter predicted life span than what the doctors are saying now that they have so many new drugs, etc I try to avoid those!

[ConcernedCaliMom]

Hi Meemsie: your husband’s diagnosis seems very similar to my dad’s journey. He would get the swollen lower extremities, and often wore those compression socks which seem to help. He also had bone Mets to spine, ribs, skull , shoulders and hips. He was on similar ADT for 4 years, which extended his life greatly!!!! I did notice his same color as you were describing , at times. I’d be sure to note that for the MD. I’m wishing your hubbs the best of luck, and agree with gentleman below....as much exercise as possible!!!! And to cut out sugar, which feeds cancer. 🙏🏼🙏🏼🙏🏼

[Tall_Allen]

Here are his options:

prostatecancer.news/2017/06...

There is no Xtiva - it is either Xtandi or Zytiga. If it is Zytiga, the swollen ankles may be a sign that he is not getting enough prednisone with it - discuss with his oncologist.

[meemsie in reply to Tall_Allen]

You are correct...Xtandi!! Sorry

[Shooter1 in reply to meemsie]

Xtandi dosage can be cut if side effects get too bad, I was an invalid after several months of Xtandi and cut to half dose and recovered. Still on Xtandi 3 year after start and little jumps up and down in PSA quite frightening but normal. Mine bounce a bit but I am still here.

x

[Karirudy]

Hi Meemsie, My husband is in a similar boat. He has mets on three different bone areas and dozens of pulmonary nodules. His PSA went down from 1700 to 14 and is now up to 36. He just started Xandi two weeks ago. We live in Mexico and travel to the States for treatment i.e. shots etc. He was diagnosed 18 month ago and we are literally living a day at a time and enjoying the gifts in front of us. The initial diagnosis was a shock and depressing but over time we have come to accept it and live for today. Doesn't mean we don't fight it but we try not to let it interfere with living our best life. Nice to hear from another wife!

[Rocketman1960]

Hi Meemsie. The PSA can be off as much as 10% from the same lab reading the same blood twice. PSA is simply a marker. Do not worry about small variations. Look for trends of at least 3 samples in a row.

[meemsie]

Thank you to everyone!

[Cleodman]

It not an uncommon diagnosis by the way. Most of us on this forum have advanced prostate cancer which is stage 3 and 4 or castration resistant. Is he doing chemotherapy? Awful stuff but along with the Lupron. Not sure what Xtiva is? Regardless blocking testosterone usually helps quite a bit for the first several years even with metastatic disease.

[meemsie in reply to Cleodman]

I was mistaken medication is XTandi. I wasn’t sure how common it was to be diagnosed with stage four -not a progression to stage 4

[j-o-h-n]

Greetings meemsie,

Quoting you: "I think I need to stay off the Internet" Do your husband and yourself a favor and stay with us for information.

Now give us more info to help your dear husband.

Location? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!

All info is voluntary, but it helps us help you and helps us too. If you do respond copy and paste it in your home page for your use and for other members’ reference.

BTW your dear Husband is not unique in his attitude regarding his Prostate cancer, a lot of us are like ostriches burying our heads in the sand. You're in good company and Bless you for caring for him...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/20/2020 6:05 PM DST

[mangeycritter]

Hi Meemsie,

In my opinion the accumulated knowledge and clinical experience found here exceeds any other source of info. Stay with us.