Starting Chemo & Immunotherapy this week

[Avanat]

My husband, Stevana on this site, finally has a date to start chemotherapy (Docetaxel) along with immunotherapy (Opdivo/Nivolumab) on August 13th. He was diagnosed on March 26, 2020. Because of extensive bone metastasis and lymph node involvement, he was not a candidate for surgery or radiation. His oncologist at Moffitt Cancer Center in Tampa said he was a good candidate for a clinical trial of an immunotherapy drug. Opdivo is currently being used for other type cancers but now they want to see if it works for prostate cancer. It’s a Phase 2 clinical trial and he is one of only 60 people in the trial. Below is the link to the trial.

He started monthly Firmagon shots in April but there was a delay in starting the clinical trial because of the Covid virus. We got word last week they were finally ready to start. He’s had genetic testing as well as DNA testing of the tumor tissue and both tests did not show any genetic abnormalities. He’s asymptomatic and feels fairly good right now (except for those hot flashes) so we are a little anxious about how he’ll be feeling after these treatments.

Thanks to those of you that have written about your experiences with Docetaxel as it’s prepared us for what to expect. We also appreciate all the helpful hints on things to do to mitigate some of the side effects. He’s got his ice socks, ice cap and something icy for his hands so he’s ready to go! He’ll be chewing on ice chips too so he’ll have to pretend he’s in Siberia while he’s getting his treatments. Either he or I will post about his experience to let you know how things go and if the icing prevents neuropathy and if it preserves his nails and hair, too. His PSA is currently 0.46 and his testosterone is undetectable.

clinicaltrials.gov/ct2/show...

[addicted2cycling]

Hoping for a very positive outcome for your husband and yourself.

Opdivo was 1 of the 3 drugs in my personalized immunotherapy cocktail injection I had for my 2015 experimental Gleason 10 treatment. My VERY SIMPLE treatment protocol was Castration then a Pilgrimage to the top of Mount Everest having Cryoablation then the Immunotherapy injection directly into prostate followed one month later with the start of my Cypionate (Testosterone) bi-weekly injections. I take 1700mg of Metformin and Avodart (Dutasteride) daily.

GOOD LUCK

[Avanat in reply to addicted2cycling]

Thank you. I appreciate any and all positive thoughts sent our way!

[Gunnershome in reply to addicted2cycling]

Hi...my husband is a Gleason 10 as well. Diagnosed just 2 years ago at age 54. Their are not many Gleason 10’s out here. Is yours Neuroendocrine PC? May I ask where you were treated? We live in Naples, FL but have travelled to MD Anderson and Sloan in the past. His cancer has spread to bones and liver. We are currently doing chemo to try to knock it back until we figure out the next step. I’m curious to know more about your treatments and success. We have two kids ages 15 and 12. This disease is brutal. Thank you for taking the time to respond. Your story/journey is inspirational.

[addicted2cycling in reply to Gunnershome]

Dr. Gary Onik in Ft. Lauderdale, almost a 3 hour drive for me from Englewood but a stone's throw for you across THE ALLEY ;0) yup - GL10 only 5% of all PCa.

AKA Dr. Hope on youtube and you can view his story about his own metastasized PCa treated by a doctor friend under his guidance employing his protocol with a spinal instead of general.

message me if you want, glad to communicate

[Gunnershome in reply to addicted2cycling]

Thank you for responding. I will look up Dr Onik and Dr Hope. I will message you as well. Thank you so much.

[Brackenridge]

We are at Moffitt too. Are you with Dr. Kish?

[Avanat in reply to Brackenridge]

We are with Dr. Chahoud

[Schwah]

Drink lots of water before and after. Really helps. And force yourself to exercise even if it’s a nice walk

Schwah

[Avanat in reply to Schwah]

Thank you. I’ll make sure he drinks a lot (water that is) and stays active.

[MarkBC in reply to Avanat]

I drank a lot of water before my first chemo treatment but found it difficult to drag all the equipment I was hooked up to with me to the bathroom to urinate. As well, the chemo put additional fluid into my body. For the subsequent treatments I held off on fluids until after the treatment was done. Then I drank a lot of water to help flush out my body.

[Hidden]

Hope for the very best outcome 🙏

[immunity1]

all the best. Enjoy your baldness if it eventuates - it can be an enjoyable experience!

[Avanat in reply to immunity1]

He has a lot of hats just in case! 🎩

[MarkBC in reply to Avanat]

I didn't mind the loss of hair. It was great only having to shave once per week. 😀

[MateoBeach]

Good luck and strength to him during this endeavor. Live long and love well.

[Blueslover]

Good luck

[noirhole]

I just wished that my nose and ear hair had come under better control. No such luck. But my under arm hair disappeared. 🤣

[Gunnershome]

Hi....I’m sorry you are in the “club” as well. It sounds like you have done an amazing job researching and discussing options. What is your husband ‘s Gleason score? You mentioned his psa is low/undetectable. Please look at his biopsy and make sure it is/is not Neuroendocrine.

Lastly....where in FL do you all live? We are in Naples. 🤗👍

[Avanat in reply to Gunnershome]

Yes, I’m sorry we are in the club too. We love to travel but this is one journey we sure didn’t want to be on. We have been researching this as we would one of our trips. This site is an amazing resource and it’s where we know we aren’t alone. At his initial diagnosis all 12 of the 12 samples from my husband’s biopsy were positive and his Gleason scores were an 8 or 9 on each tissue sample. He asked his urologist to have another lab do a review and Johns Hopkins gave most samples a Gleason 9. His cancer is adenocarcinoma, not neuroendocrine. He had been seeing a urologist regularly and his PSA had been rising incrementally and was only 3.8 when he had his biopsy. He’s reacted well to ADT so we hope the chemo and immunotherapy can keep the cancer at bay for as long as possible.

My husband was 67 when diagnosed and just turned 68 this month. Your husband is so young to have this. Take care and good luck to both of you.

By the way, we live in Tampa.

[Gunnershome in reply to Avanat]

Hi, Thank you for replying. I'm glad to hear that your husband does not have the NE type of PC. This one is VERY tricky. We love to travel as well....but this is not a fun journey for sure. I hope your husband's chemo/immunotherapy works well and please keep us informed. Sometimes it is nice to share experiences, knowledge with others and have someone to "connect with" other then family and friends. All the best.

[j-o-h-n]

Break a leg.............

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 08/10/2020 8:00 PM DST

[Hidden]

Good luck 🍀