Life After Chemo???: Well, I am now... - Advanced Prostate...

Advanced Prostate Cancer

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Life After Chemo???

40 Replies

Well, I am now through 3 infusions of Docetaxel. Glad all of you strongly recommended it for me. First 7 days awful, next 7 days not too bad and the last 7 days almost normal. Interim numbers are going down - PSA 15.5 to 2.7 and ALP 235 to 125. Three more sessions to go.

My question for all of you that have done this, how are you doing now???? Love to hear your thoughts once again.

Thank you for your continued input.

Tom

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40 Replies
dockam profile image
dockam

Hey Brother, I'm actually in the chemo chair at Kaiser getting my 6th and last Taxotere chemo now.Had 15 Taxotere chemos in 2015 and PSA went from 840.2 to 0.7 in the Summer of 2017.

Did them all with a two day fast prior and still worked as a DDS. I still do a daily 16 hr fast also

Abiraterone and Xtandi both failed last year. The hope is that the two new pelvic lymph nodes that lit up last Fall will resolve💙

Fight on

Randy

Selfie in chemo chair
in reply to dockam

Brother RandyYou are a fierce warrior.

How long before your PSA started up again???

Fight on Bro!!!

dockam profile image
dockam in reply to

By the end of 2019, PSA got to 9.6. Started Abiraterone in January 2020, PSA dropped only to 4.2 and then went up. Then Xtandi and PSA still rose 😢First Taxotere of the 2nd round was on New Years Eve 2020.

Local paper wrote this :tehachapinews.com/lifestyle...

in reply to dockam

You’re amazing ! 🤙🏽

Spyder54 profile image
Spyder54 in reply to dockam

Randy, your energy level is off the charts! I have no idea how you do it. I have a good buddy who is a Dentist in Santa Barbara, so I know how physical it is to run a practice, and then to add the regiment of training for Marathons, all while on ADT ! You are beyond amazing. To your Health, to a long life. May we all find cure in the near future. My best to you and yours,Mike K

St Petersburg, Fl

in reply to dockam

Hang in there Randy .. you are one tuff cookie 🙏

MateoBeach profile image
MateoBeach in reply to dockam

Have you had full pelvic PLN fields RT?

in reply to MateoBeach

yes - 18 years ago....

j-o-h-n profile image
j-o-h-n in reply to dockam

Man o Man.... you're really "biting into it"....... you get my vote.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/17/2021 12:23 PM DST

in reply to j-o-h-n

Thanks John

Cooolone profile image
Cooolone

I'm in same boat, 3 infusions so far, 4th next week. 1st was the worst, had burnt mouth feeling like I downed a bowl of hot soup for 2 weeks... Metal taste in mouth with infusion, etc. Hair loss after 2nd week. The steroids are amazing, but as good as that high is, comes the fall. Usually day 4-6 is worst, but knowing it goes away makes it easier to deal with. And yes, 2nd week is so - so, the 3rd is pretty normal. Blood sugars have been affected by the steroids so now having full blown diabetes, so got that under control too with Metformin and diet. All in all, the Docetaxel is tolerable and not much really to report as a downside, so far! I've used ice on hands and feet and chew ice chips while infusing the chemo. Definitely helped and mitigated the burnt mouth effect to pretty much nothing. Otherwise dry skin and dehydration is the biggest thing I've noticed.

I'm 56 mHSPC, newly Stg.IV, no lymph nodes involved, but mets to Peritoneal and Appendix and opted for this instead of Zytiga... Seeing how it goes! Rest of my story is here in another thread.

Best Regards and Good Luck!

in reply to Cooolone

CoooloneYou and I have identical symptoms. Ice has helped me to during infusion. I hate metal mouth. Seems to go away week 3. I am 73.... Hope it works...

Warmest regards,

Tom

in reply to Cooolone

56 is too young for this BS. I’m

Near 60 myself . Let the chemo take the pc down the drain brother. Heal up afterwards. Good luck 🍀

Cooolone profile image
Cooolone in reply to

Thanks and you as well!!!

Zetabow profile image
Zetabow

Had my 4th on Thursday, came home and slept all afternoon/night, Friday I was okay and started to feel rough in the evening, 3am right now, head is bad and some pain in legs. Drinking lots and resting. worst thing that's happed this time is I lost 3 teeth, the enamel came off and they just disintegrated, I suppose worse things can happen with Chemo.

PSA started at 360, got it down to 70 on 3rd round but it's gone up to 90 this time, I'm a little concerned as my last 3 treatments all went this way, starts off good then PSA starts climbing. Zytiga was last treatment which went okay for a couple of months the PSA shot up. Not sure what they will throw at me if the Chemo doesn't work. I'll have to wait 3 weeks to really know the situation, keeping fingers crossed that it's a small hic up and the downward trend continues. My first round of Chemo in Dec 2018 worked way better than expected, started of with PSA of 1386 and got it down to 0.28, it only lasted 11 months but the numbers were encouraging back then and was on a high, despite the pain.

I've had my share of ups and downs with this, I'm still grateful for the extra time I've got with my Wife and boys thanks to caring Doctors and Nurses.

in reply to Zetabow

I too am

Grateful for all those helping me medically over the years. ✌️

Newyork6264 profile image
Newyork6264

Finished 10 sessions of Taxotere. PSA went from 30+ to 5. Alk Phos dropped to 61. Last two sessions wiped me out. 5 weeks after completing PSA went up to 7. Alk Phos to 90. Have scans and another blood test first week in May and then will decide on path forward.

Avanat profile image
Avanat

Tom,

My husband had his last Docetaxel treatment in December, 2020. He just had his first post chemo scans in March. They showed his lymph nodes had all decreased in size (the biggest went down 35%) and his bone mets were stable. His PSA is undetectable. His oncologist was very pleased and said this was a great response to the chemotherapy. We were happy too! To not have any new cancer growth and shrinking of what’s there is about the best news to get. I hope you have a similar response.

My husband was apprehensive about doing chemo but now that he’s done it and got through it relatively well, he’s glad he did it fairly soon after diagnosis. He just had blood work yesterday so here’s hoping his PSA is still undetectable. 🙏

Alana

in reply to Avanat

Alana:I so appreciate you sharing.

God Bless You.

Tom

EdBar profile image
EdBar

I was dx in 2014, G9, Stage 4. After some initial reluctance I had chemo per CHAARTED in 2015. So I just passed the 7 year mark since dx. I’ve done some other treatments as well, I took the kitchen sink approach per Snuffy Myers, you can read my profile for details.Took a while to recover from chemo, it’s nasty stuff, I still have neuropathy in my hands and feet and my immune system took a hit and it took a while to recover. But given the results I’d do it again in a heartbeat. Treatments 4-6 were the toughest, so be prepared and take care of yourself during and after treatment.

Ed

in reply to EdBar

Thanks Ed:So what is your PSA now and what meds are you on??????

Tom

EdBar profile image
EdBar in reply to

Lupron, Xtandi, dutasturide, metformin

Last PSA was .021

It had been undetectable for around 6 years. I use the ultra sensitive PSA test.

in reply to EdBar

GREAT News!!!What is dutasturide and metformin????

Thanks for sharing.

Tom

EdBar profile image
EdBar in reply to

Dutasteride blocks the formation of dyhydratestosterone which feeds PCa, its part of the triple blockade that Snuffy Myers prescribed.it’s commonly used to treat BPH by urologists (that a nontechnical explanation).Metformin is a long time diabetes drug also prescribed by Snuffy Myers to block a pathway used by PCa and to prevent metabolic syndrome from long term ADT. If you go on you tube you can find several videos regarding metformin use by Snuffy. He believed in a “multidimensional approach” to treatment, so far so good with that approach for me.

pubmed.ncbi.nlm.nih.gov/185...

Ed

MrCatMan profile image
MrCatMan

Second time on chemo; first time was for breast cancer and a mastectomy. Finished round 6 5 weeks ago. No sign of hair growth, yet, but CT scans showed shrinkage of enlarged lymph node and undetectable PSA. I has a Gleason 9 after RP and PSA of 63. No bone mets. I'm on Lurpon monthly and took Casodex for two weeks after round 1. I made food journal for that first 9 days to see what I could eat and could not stand. I did get nueropathy in my hands that's still bothering me but slowly getting better, Also, watery eyes and nose, which is slowly healing. I also had a low grade tumor removed from my bladder and another nets taken out of my stomach, both did not enter the margins or lymph nodes.

Now I'm on Xtandi and continuing Lupron, and I should get lab results back Monday for blood work. Fight on.

j-o-h-n profile image
j-o-h-n in reply to MrCatMan

Yep FIGHT ON!!! 9 lives.......

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/17/2021 12:28 PM DST

in reply to j-o-h-n

John you are the best. We just have to keep ducking and swinging to get the monster.Have a great day

Tom

MateoBeach profile image
MateoBeach

Embrace the chemo as it truly sucks. And truly helps as your response indicates. The brotherhood and sisterhood of the chemo infusion room is a deeper level of warrior hood. It bestows time. For some more than others. Then we move along. For me my 6 cycles of docetaxel controlled my PC and PSA very low for two years. Which was also how long it took for the residual fatigue to resolve. So I thank the chemo for being a “teacher” and giving me two extra years of life. (And that was 14 years ago and I am still living robustly with advanced prostate cancer.) I salute you

in reply to MateoBeach

WowMateo:Great Story.

What is your secret?

Thanks,

Tom

MarkBC profile image
MarkBC

I did my chemo shortly after diagnosis in the summer of 2018. Each round was a little worse for fatigue. Hair fell out at round 2 but started coming back a month after completion. Not all my hair grew back, especially my eyebrows and eyelashes. I wear glasses so nobody notices. Head hair and body hair is a little thinner than before.

I had neuropathy in my toes. It took about 5 months to disappear. I wore ice mittens so my fingers were fine.

My taste buds went during rounds 5 and 6 but that came back quickly after completion.

My PSA continued dropping long after chemo ... from 103.0 at diagnosis to a nadir of 0.17 a year later. It has bounced around but remained below 1.0 since then. My scans 4 months after chemo showed dramatic shrinkage in tumour size and that has remained so chemo was well worth it. I'm feeling great almost 3 years later. Best of luck to you.

in reply to MarkBC

Thanks for sharing Mark:Are you still on Lupron and anything else????

Tom

MarkBC profile image
MarkBC

I remain on Zoladex (similar to Lupron) and my oncologist says I will be on it for the rest of my life. Two months ago she added bicalutamide because my PSA was creeping up towards 1.0. It has now dropped again to my nadir of 0.17. I am having scans done next month just to confirm that the tumours are remaining suppressed.

in reply to MarkBC

Thanks Mark:I had great luck with bicalutamide too - before Lupron and Chemo.. So your PSA continued to drop after you finished your 6 infusions??????

Tom

MarkBC profile image
MarkBC

Hi Tom. My PSA dropped dramatically at first and then continued to drop slowly for almost a year. I get a PSA and testosterone test done every month. I think I read somewhere here that the longer it takes for your PSA to reach it's nadir, the better your survival statistics are.

I just looked up an old message of yours that explains your history. (You should paste that in your profile to make it easier for others to see). I was diagnosed stage 4 with bone and lymph node mets so I started docetaxel and ADT right away. My experience may be different than yours.

Mark

in reply to MarkBC

Thanks Mark.Yes I guess I am a lucky SOB for stay in front of the monster now for almost 20 years. I only have one friend left that started this journey with me.

I am encouraged that my PSA has already dropped from 15.5 to 2.7 and my alp has gone from 235 to 120. I sure hope my PSA continues to drop for the rest of my infusions and after.

Thanks to you and everyone on this site for your unselfish sharing of your thoughts and your experiences. Fighting this as a group sure makes it more tolerable to know what to expect from people that have already been there..

Thanks for sharing

Tom

Tonwantonga profile image
Tonwantonga

I just finished my 6 sessions of Taxotere 12 days ago. 55 years young (I thought), I was diagnosed with PC in September 2020, bone scan in October showed 'numerous and extensive' mets to hip, spine and ribs. PSA of 38, started ADT in October and Chemo in December, ALPs was 780, PSA now undetectable and ALPs 68. My weight fluctuated some during chemo but was the same every visit for chemo.

They told me I had Covid on Dec 23, and my hair fell out Christmas Eve. Sipping Sprite with crushed ice during chemo definitely helped with the metallic taste , and I took frozen bottles of water to hang on to for the last two sessions, no neuropathy developed. I keep forgetting that I was poisoned 6 times, so I try to get a normal days work done and fatigue slaps me down in the late afternoon.

Getting a little better every day, I tell myself, some days I believe it. Depression, which I never had to deal with before, is hanging around too, wish I could shake that shadow. looking forward to growing some hair back, I have never been more like a tomato than I am now, sexless and hairless. testicles already less than half the size they were 6 months ago, and the right one is going soft. No scans yet, but going back next Tuesday to get more tests to start a clinical trial, I was told there would be scans at some point as part of that.

my fight now involves diet and exercise changes, I asked for a cholesterol check on one of the numerous samples they have taken, and was told it is high, so oatmeal for breakfast, and sardine sandwiches almost every lunch now. heart healthy diet is good for cancer too, I have read. Lifting weights, and trying to get more steps. I need to dust off my jogging shoes and get back out on the road, I haven't been able to motivate myself to do that just yet.

in reply to Tonwantonga

TonwantongaWow what a great story.

So you were on lupron now?

May I ask what the trial is that you're about to start it sounds like you are off to a great start already with the success of the chemo.

My hair has not totally fallen out and I do wear the ice gloves and ice shoes during treatment so that has helped my neuropathy. I've been lucky in that I've been fighting the beast for 18 years and just 3 years ago had to start ADT and now chemo. I was diagnosed at age 55 with a PSA of eight and 3.4 Gleason but after my prostatectomy they told me that some of the cancer had escaped the capsule.

18 years later I can certainly relate to everything you're talking about on the sex side. It's hard to dream when things used to be but it's great to think about how great it is to be alive. Keep fighting brother

Thanks for sharing. What is the trial you're going into and where are you being treated???

Tom

Tonwantonga profile image
Tonwantonga in reply to

I am on Eligard, second injection the same day as my last chemo session, and the hot flashes started up with gusto that evening. 4 or 5 just that first night, and several over the next few days after that. They have calmed down some now, only a couple a day and a couple at night.

I am being treated at The James, which is associated with Ohio State University. The trial my oncologist invited me to participate in is to see if an RP or radiation to the prostate will increase survival time of persons with multiple metastases. I guess there is some evidence that treating the prostate helps those with oligometastatic PC.

in reply to Tonwantonga

Good luck and thanks for sharing.

Spyder54 profile image
Spyder54 in reply to Tonwantonga

Good morning Toneantonga, is the trial you are discussing with your Onc at Ohio State, the SWOG 1802 out of MD Anderson?

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