More bad news: Seems like all we get is... - Advanced Prostate...

Advanced Prostate Cancer

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More bad news

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Seems like all we get is bad news. 4wks ago I posted how my dad’s PSA went from 3.5 to 10 in 4wks after being switched from Zytiga to Xtandi (Zytiga failed at 7 months). Well today we found out his PSA is at 20-it has doubled in 4wks. His alkaline phosphotase has increased and his calcium level is sky high. They gave him Xgeva to bring down his calcium level and the next step is taxotere. What terrifies me is that my dad told his oncologist that he needs to think about chemo and he will get back with him on Monday!!! What?! I am so scared he’s not going to do it!! My dad is a young 76yr old that has never been sick in his life before this! This is still a shock to us all. He was diagnosed in November of 2017 with stage 4, Gleason 10, widespread metastatic disease in nearly every bone in his body. How does this happen?!

3yrs ago cancer took my mom and it was awful and I can’t handle losing my dad to this. I am devastated. Thank you all for letting me come here and post my feelings. I don’t know where else to go. This is devastating news for me. Does someone with Gleason 10 advanced disease even have a chance??!! His PSA is doubling every 4wks. He’s on Metformin, Lupron, Xtandi and now Xgeva. They are taking him off Xtandi. Next treatment option Taxotere (if he even does that). I am completely heartbroken!

If he does taxotere how much time will this buy him at a Gleason 10 with PSA doubling every 3wks?

35 Replies

Taxotere can be extremely effective. It kills cancer cells. I would urge him to seriously consider it. I was lucky when I did Taxotere. I went about my life with practically zero side effects. If his white blood count gets to low, they have a drug to counteract it. If his MO declares him fit for chemo, urge him to go through with it. It does prolong life. Good luck and cheer up a little please.

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Hidden in reply to Bill48162

MO said he would have approx 6 months without chemo and maybe a year with chemo. Completely crushed. Thank you for your reply. I appreciate it very much.

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How is he feeling now ? Pain level? Fatigue? I’m no Doctor but Chemo , although feared, has been successful for many in the same shape. Mom now Dad. That’s brutal for you. This is a vicious disease we carry.. for our loved ones also ...You are a very capable advocate for your father.. Compassion and love are your most powerful tools. He can say yes .He will suffer . But there is hope to survive.

If he refuses treatments, that his choice to make.. Don’t fixate on 6months or 1 year. If he is feeling pretty good and strong , I would do the most aggressive treatment suggested to him. No # 4 , Gleason 10 guys are given a long projection of life. We can work to improve quality of life and comfort issues. He needs your strength so stay strong yourself .. just witnessing two of the people you love suffer now twice so close is tremendously heavy.. Many prayers for papa and you. Scott..

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Hidden in reply to Hidden

Thank you Lulu700. He doesn’t have much pain. Just has had bad side effects from Xtandi.

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Hidden in reply to Hidden

A blessing of not much pain. I am familiar with the side effects.. of adt.. You can promote hope in him. I hope that you can get some quality time with dad even in the midst of suffering.. from pc.. Prop dad up. But don’t carry the weight of the world on your shoulders. 99% of it is just being there for him.. Thank you , for letting us know what’s going on. There is A lot of help and caring here... for you. Take care Hopeseeker, never give up hope.. Your dad is here today. That’s all that we know for sure.. Tell him others in the same boat are pulling for him.. Scott

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Hidden in reply to Hidden

I really appreciate this Lulu700 ❤️

I am so sorry to hear about your dad and about how you are feeling. But it sounds like Chemo is the only next possible step because the cancer sounds very active at the moment. Good luck and keep s posted! Mel.

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Hidden in reply to MelaniePaul

Good luck to you too. Thank you 🙏

when people talk about Gleason score that usually means nothing has been done to lower ones pas. once i was on many types of cancer tx then Gleason score went out the door. usually u get the score, then treatment after the bisocopcy then treatment.

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Hidden in reply to charlesmeyers1964

64 was a good year. Those look like fresh picked pears? Mmm....

Sorry to hear of your fathers deterioration. Zytiga has stopped working for me and my MO offered Chemo (Docatexel) as that is funded but only once changes are detected by CT. I am opting for Lutetium177 even though it is not funded and involves some travel. So far I have had a Fluorine18 PET scan and am waiting for results to see if I am ligand sensitive. If I am not then I only have one option. Some are lucky with chemo side effects but others are wiped out for the 18 week course. I would like to see numbers on how long it extends survival so I can make an informed judgement whether to go for it or not.

Keep posting and I will keep you updated.

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Hidden in reply to boseley

Where are you traveling to get the Lu-177?

boseley
boseley in reply to Hidden

Sydney

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Hidden in reply to boseley

Best of luck in Sydney.. mr boseley!

ARIES29
ARIES29 in reply to boseley

Hello boseley, i just had my first treatment of Lu-177 at Macquarie hospital in sydney only 10 days ago. So far no side effects,dry mouth & a fealing of not quite right but if it eats the cancer its worth every cent.

Will keep you posted.

Hopeseeker I feel for you. My husband is at the same frustrating crossroad in decision as your dad is. I too wish there were some miracle for these men at this stage but as there may not be right now I pray for each and every one of them here. I too wish there were some stats we all could look at and help in their decision making. I will keep you in my prayers and please message me if you’d like.

Sheri

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Hidden in reply to Tub111

Big hugs Sheri. It’s so hard. You are in my prayers. Thank you for your messages.

So sorry to hear your delima, my dad is in a similar situation but a little older 87. He won’t do chemo. Tell Dad chemo really isn’t the tough. I’m stage 4 w Mets in ribs,spine and lymph node. Hate it that doctors drag there feet and do chemo as a last ditch attempt to save a mans life, my doctor did the reverse, chemo first. Your dad should have a lot of life left yet. Good luck 🙏🙏🙏🙏🙏

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Hidden in reply to larry_dammit

I’m so sorry to hear about your dad. This is so tough. I’m happy you are doing well. Continued health to you and prayers for your dad.

Me too feel the same for my dad. I’m devastated. He’s older at 87 and I don’t think we want to try chemo and I don’t want to make these decisions for him, I’d be heart broken if he were to suffer ! Well now he’s CRPC status after a year in Firmagon and considering Zytiga next !

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Hidden in reply to sujkap

I’m so sorry-it’s so hard!! I hope you get a long time from Zytiga. My dad did well on it but only got 7 months. I’m sending a big hug 🤗 it’s tough!!

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Hidden in reply to Hidden

Hopeseeker , your dad is no different than most in fear of chemo.. My mom 91 , always says she’ll never do chemo. In her generation they saw people that did some of the brutal chemotherapies of thier time and many didn’t survive. I haven’t done it yet myself. But others here have had pretty good luck . Pray for him . Maybe he can handle well. It s worth a shot. Peace to you an$ your family today.. Take care..

To honor your father’s wishes is the best course. It may be painful to you, but he made a decision that is right for him. Make sure that he has the necessary medication to alleviate pain. However, chemotherapy is the only way to gain him more time. I used chemotherapy in 2004 for recently diagnosed metastatic prostate cancer as my first line of treatment. I had never had any of the silver bullets developed. I was very fortunate to tackle the cancer while my body was strong and the tumor burden minimal. I do know that my best friend when given the time to get your affairs in order, was able to take a chemotherapy regime which gave him another 2 1/2 productive years with his family (including a 10 and 13 year old).

As an aside, in my opinion side effects of any drug should not be a concern as most are eased through medication. While no walk in the park, side effects are very manageable. If he were to ask me, I would say, “Do not fear chemo.”

Sometimes life throws unhittable curve balls. Make the most of your time with him and insure that his financial affairs are in order. My heart goes out to you and your family.

Gourd Dancer

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Hidden in reply to gourd_dancer

Thank you ❤️

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Hidden in reply to gourd_dancer

Great words of encouragement !!

I was gleason 9, psa 59.9, alk phosphate 169 when I started chemo/lupron/xgeva march 2017, age 67. was told 1 and half years without chemo, 2 and a half years with chemo. Half way through I was told I have many years. Did 8 cycles taxotere. Alk phosphate flair to over 200 1st treatment (apparently normal means the cancer cells are dying). I am at 68 last check. (Was puzzled why they changed to many years but it was the alk phosphate response. I learned that from this site. THANK YOU everyone. And who knows about the many years, if they were wrong once, they can be wrong twice.) The dexamethasone tablets gave me insomnia for 2 to 3 days, the chemo was an hour or hour and a half, drove myself there and back because its me, myself and I doing this. You feel a little down starting the 3rd day for a week. For me anyway. 8th one was a downer as is cumulative. Could go all day on this but here's the point. I don't want to give false hope but it sounds like the only choice you have. Ask him to TRY it. He doesn't have to do all of the usual 6 cycles if it isn't working. I'm psa .2 now and getting around just fine. As for the many years, who knows. Hoping things work out for you.

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Hidden in reply to monte1111

I wish you many many more years. I’m so happy you have had a good response. Thank you for giving me and my family some hope.

If off xtandi for a while before taxotere so double side effects don't kick in he should be fine....Gleason 9/10 and PSA 52- 18 months ago . RP and in 6 weeks PSA climbed 10 pts. with no prostate and clean scans... Same 12-18mo. forecast as life expectancy. 2 1/2 mo later Scans showed mets in soft tissue and bones. Stage 4, Gleason 9/10, down to 10-16 mo. Now past 19 mo. and in remission and looking at up to 10 yrs. Never know what will work, but taxotere worked for me...Well worth a try. Soft tissue mets disappeared, bone mets show as scar tissue. I'd say go for it. Every 3 weeks for 6 cycles standard, I went for 9 cycles while still on Xtandi. Combined side effects were really bad, so stopping Xtandi first a good Idea..

Doug

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Hidden in reply to Shooter1

They are saying 4 cycles total every 3wks. Wonder why MO is only saying 4 cycles???

Thank you for this post!! This gives me hope and I pray my dad decides to try it.

Shooter1
Shooter1 in reply to Hidden

Maybe age?? But I'm 68 so not much different. Also very healthy except for this one thing they say will kill me, but now not for years to come. Good luck and if side effects aren't to bad and PSA keeps dropping, opt for more than 4.

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Hidden in reply to Shooter1

That -a- boy ! Shooter 1 ...

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I really appreciate this. Thank you Lulu700

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My dad has decided to give chemo a shot!!!!!!! I shared with him so many of your comments and I truly believe that is what changed his mind. Thank you!!! Can anyone give me any advice on things we can do to help minimize potential side effects of the taxotere?

He is Gleason 10 with his PSA doubling every 3wks. He has extensive bone metastasis, too many to count. Will he have a shot at taxotere working for him?

ann1919
ann1919 in reply to Hidden

Hi. My dad is 89( will be 90 in Feb)and had 5 rounds Taxotere, once every 3 weeks. 6 were planned but he develop ulcers in his esophagus they think from the prednisone he took 2x a day while receiving chemo.

The main side effect he had while on chemo was neuropathy in his hands and feet. Neurontin was prescribed and helped. He had min nausea, ondesterone was prescribed and it worked.

On the days he received chemo he would say he never felt better in his life. The med onc loaded him up with dexamethisone, 2, 2mg tabs 12 , 4 & 2 hours prior to treatment. Then IV dexamethisone and ondesterone prior to the infusion. He said he felt 40 again. We walked regular & still do. I believe that has helped him. I’m glad he decided to receive the Taxotere, I believe it was helping him. His PSA was starting to drop. A month after the chemo was stopped the dr put him on Xtandi and after 3 weeks his PSA went from 6 to 1.6.

He has mets to his shoulder, multiple spine areas, ribs, pelvis and femur. He’s still walking over a mile, 3-5 days a week. His shoulder bothers him, but he also has arthritis in it.

I wish your dad well & am glad he will try the chemo. Take care.🙏

Chemotherapy is not as bad as it used to be long ago, the side effects are annoying but manageable nowdays. He has both Docetaxel and Cabazitaxel in his pocket, two big guns that will give him a good amount of extra time.

My father went through 6 sessions of Docetaxel and tolerated the side effects well.

Did he also try Xofigo (Radium223)? It's a radiopharmaceutical that is very effective on bone mets, ask your MO for it.

Best wishes to you and your father.

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