what to expect: I was diagnosed in... - Advanced Prostate...

Advanced Prostate Cancer

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what to expect

DoubleBlind profile image
15 Replies

I was diagnosed in September with metastatic prostate cancer related to the braca2 Gene. I went on the Lupron and then.Abiraterone in December. I’ve now had five out of six docetaxel chemo sessions.

my energy has been shot to hell. There are days that it’s all I can do but get out of bed. I can get winded just walking to the bathroom.. I continue to push myself to bike ride and garden and walk. It feels like I’ve aged 30 years.

if I’m sitting on the floor, I can’t stand up without using a pole or grabbing onto something. I feel worse as if I’ve lost 80% of my strength.

I have one more chemo session. Then I will continue on the abiraterone and Lupron.

I assume my hair will come back. And perhaps I hope my sense of taste comes back—I’ve lost just about all my taste buds.

Is the loss of energy and weakness due to the chemotherapy or to the ADT? How long will it take to begin to recover from the side effects of chemotherapy? Am I going to remain at this level of energy or will I begin to get that back? When make that happen?

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DoubleBlind
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15 Replies

Hang in there Sir! I felt the same towards the end of radiation therapy . Itis one hec of a state of affairs . You’ll get better . Just pray that this stops pc in its tracks ? Then the suffering can lessen and translate into more years to live . You’re paying the piper now . But, The chemo has worked well for many . I’ll let others that have done it inform you . Keep faith that you will get better . I had three very tuff years starting out with pc . It was chronic fatigue syndrome . I think the weaknesses are from both adt ( stopping t production) and the chemo! A double whammy ! Make it through ,dig deep ,then recover and get out of misery . You will pull out of this ! 🙏

mrscruffy profile image
mrscruffy

I too am BRCA2, I chose Lynparza over chemo. But could still be in my future. Was wondering how chemo affected people. Get through and build yourself back up. Good luck!

DoubleBlind profile image
DoubleBlind in reply tomrscruffy

I've had

*5 opportunistic infections: 2 diahrhea (entamoeba and c.diff), 2 UTI (ecoli) and one finger (staff/strep). All treated early.

*loss of taste

*apthous ulcers

*weakness

*fatigue

*lost a toenail

*lost my hair

But despite all of that, I'd give it a 3 or 4 on the scale of side effects.

CAMPSOUPS profile image
CAMPSOUPS

You have Lupron/Eligard plus Zytiga plus Chemo all at the same time.

I had Lupron/Eligard plus chemo when I was first diagnosed. It sounds like you are hit the way I was. I remember the shock when I could'nt get up off the floor without grabbing something to help pull myself up and I was only 63 in pretty good shape. Most of what you are experiencing in my opinion is from chemo. We don't all respond the same. But sounds like you and I have a similar experience.

I hope you don't mind the reality but studies and my experience show it takes 2 months to recover from every 1 chemo infusion so a year for 6 infusions. It is a slow process and hardly noticeable but days come when you notice you are gaining back abilities you had lost.

A year after my last chemo infusion I had pretty much recovered from it and just experienced the normal fatigue from Lupron/Eligard for a year. Then I started progressing and started Zytiga and really didnt notice any difference in fatigue etc. with the addition of Zytiga.

DoubleBlind profile image
DoubleBlind in reply toCAMPSOUPS

Thanks. My taste is coming back a bit. 12 months to recover ...ouch.

CAMPSOUPS profile image
CAMPSOUPS in reply toDoubleBlind

Glad to hear about your taste coming back.

There is that well known caveat which is we don't all respond the same so 12 months isn't carved in stone. And it's not like a light switch of course. You don't experience what you do today for 12 months, instead get gradual improvement.

groundhogy profile image
groundhogy

i can say that when depression kicks in for me, my arms and legs feel like lead, and I don’t want to get out of bed.

JD-guy profile image
JD-guy

Chemo, set me way back. My hemoglobin went way down to 10.8. Once I was finished with chemo, it took some time, but I was able to get my hemoglobin back up to 14.1. Hang in there. There are other side effects that I am dealing with also, like lympdemia and neuropathy etc. This is a journey.

larry_dammit profile image
larry_dammit

I believe it’s the chemo that has done most of the damage, I was diagnosed in 2016 ,very active , had just finished a 5 mile hike in the mountains. By the time I finished the chemo I couldn’t walk a mile if I had to. Hang in there warrior it’s a long trip back to the new normal. Eat what you can, sleep lots, love a lot. My hair grew back thick . Just don’t loose anymore weight. I eat a lot of potatoes and gravy, followed with pie and ice cream 🤪.

CAMPSOUPS profile image
CAMPSOUPS in reply tolarry_dammit

Right on Larry. This stuff can be tough. Have to do our own thing to get thru it.

ShipModeler profile image
ShipModeler

I went through 28 IBRT's. But first I was given my first Lupron injection. After the radiation I began taking Zytiga (Abiraterone). I felt fine through the radiation, other than seven weeks of diarrhea. It was when I starting Zytiga that the fatigue set in. I can more my lawn, I can't walk nine holes of golf. I can even walk up the 10 stairs from our basement without having to stop because my legs and breath are spent!

look you have a terrible disease complicated by the aging of a 71 year old man. Side effects will pass. Yes, I felt like crap years ago when I did chemotherapy (nine infusions of Taxotere and nine infusions of Adrimyacin with orals to match and hormone therapy 19 years ago, Same side effects... yes, my QOL suffered, but bounced back. I have been normal since 2009. As we get older we just can not do the things of a middle aged man. At 76, I feel great and enjoy life. Stay positive; and you will persevere. Take advantage of our Creator, positive thoughts, and the knowledge and skills of trained medical professionals. Best wishes.

Gourd Dancer

Since you are BRCA2+, use of a PARP should definitely be in your near future. I was on Olaparib, which kept my PSA undetectable for close to 2 years. My most effective treatment to date. Unfortunately, have not yet found any follow-up treatment anywhere as long term effective as Olaparib gave me.

DoubleBlind profile image
DoubleBlind in reply toHopingForTheBest1

I will be joining a trial for this.

HopingForTheBest1 profile image
HopingForTheBest1 in reply toDoubleBlind

You don't need to be in a trial in order to get Olaparib, an FDA approved drug.

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