PSA from 23.1 to 80.1 in 5 weeks

[Daddysdaughter]

Hello my father completed his 4th round of chemo and was told that it was failing because he developed bone metastasis.Even while on chemo his PSA was increasing by 1 to 2 points after every round. Since March 16 when he finished his last round he hadn’t had his PSA drawn. Upon evaluating to see if my father could get on a trial at Cedars Sinai Medical Center his PSA came back this morning at 80.1. He still only continuing on the Lupron. Also his testosterone was always less than seven and came back 13 today. I know they are just numbers but I am so disheartened. We knew that it was going to grow but we didn’t realize it was going to be this fast. 😔

[Hidden]

Wish I knew what to say. I can say that we are all with you. Hopefully things will take a turn for the better with a different approach drug wise. Hang in.

[Dan59 in reply to Hidden]

Prayers for you and your Dad, It is my hope they can turn this around for him, I wonder if restarting xtandi might work. We are all here for you.

Dan

[Daddysdaughter in reply to Dan59]

Possibly Zytiga, I know I just cannot believe it. But it is what it is and we are making the best of spending time with him. We are lucky he doesn’t have any symptoms as of now 😊

[Daddysdaughter in reply to Dan59]

How’s the carboplatin/jevtana working for you?

[Dan59 in reply to Daddysdaughter]

I am only doing jevata, cabazitaxel right now. Has you dad ever had xofigo,radium 223?

[Daddysdaughter in reply to Dan59]

No he hasn’t. We’re in the process of waiting to see if he can be on a trial but is PSA is rising 10 to 12 per day.. it’s so scary I need him to be on something as soon as possible. My father did really well with Jevtana/Caba with Side effects that were completely tolerable unfortunately it just maintained his PSA and he also had bone Mets while on it. But now looking back it’s almost better that he just continued chemo till we found the next step because we’ve never seen his PSA jump so high. Wishing you all the best and I hope this kills this beast for you Dan. I will discuss Xofigo and radium with his MO.

Thank you

[Dan59 in reply to Daddysdaughter]

I will keep you both in my prayers, truthfully all jevtana is doing for me is maintaining the psa , which currently is 120. Rad 233 is not known to control psa , though it is known to extend life.

Dan

[Daddysdaughter in reply to Dan59]

Yes, We were told that about the PSA and Radium 233. Jevtana did the same with my father it just basically kept it stable. That’s why I’m still not understanding why they didn’t just keep him on chemo. Maybe because of the bone Mets?

[softwaremom00]

I am so sorry. This can be such a beast of a disease. Try to keep up hope and enjoy spending time with him. It sounds like you two are wonderful friends. I was best friends with my Dad too. Please know that you are both in my prayers. Tons of hugs!

[Daddysdaughter in reply to softwaremom00]

We are♥️Thank you! Hugs to you & hubby too!

[Tonyland]

I'm so sorry for the most recent test results. Did you all discuss next steps?

[Daddysdaughter in reply to Tonyland]

Yes we are waiting for a test call DLL3 to see if he is positive he may qualify for a trial ( we are hoping it’s negative) the trial has severe effects.. but his new MO is thinking this is not neuroendocrine (that’s what it’s been treated as since he has low PSA and night chromagranin).

Plan B is Zytiga and or possible trial with carotuximab. I haven’t looked into this trial yet. Thank you for all your support, sometimes I’m just looking for a text to cry in lol!! Thank you all. Prayers to all those loved ones fighting this and strength to all of us caring for them..

[Tonyland in reply to Daddysdaughter]

Oh good. Thank God for further options. Yes, we all need support, hope and prayers and I thank God for this site.

Many prayers to everyone and try to stay encouraged no matter what.

[Daddysdaughter in reply to Tonyland]

Thank you tonyland 🙏🏻

[Daddysdaughter in reply to Tonyland]

His biopsy was negative for DLL3, this is looking less and less neuroendocrine. So we couldn’t wait to decide on next step or trial, my father started Zytiga on Saturday. His PSA Friday was 98. I am praying and begging that Zytiga works and for once we get good news!! 🙏🏻

[Tonyland in reply to Daddysdaughter]

I think you guys will be fine with Zytiga. We did Zytiga first and then Xtandi and actually, even though we were surprised, we actually got a longer response from the Xtandi, after the Zytiga which isn't usually expected.

[Daddysdaughter in reply to Tonyland]

I really hope so!! Wishing you all well!

[ronnie1943 in reply to Daddysdaughter]

Hi, I can relate to what you are feeling right now, chemo also failed for my husband, right after twelve treatments PSA started to double. Put on Zytiga that failed him to. I think I'm not sure but the drug you are speaking of carotuximab is the generic name for what my husband is on now?? Sam, my husband is taking a targeted drug it's called cometriq.they say these targeted drugs are a game changer for PC. I hope I not confused, I'm not to educated as most on this site.

Praying for you and your Dad. Don't give up,there are still options out there and more in the making everyday. I feel your hurt, I'm also a caregiver and not ready to loose my husband. Sam started his journey at age65, he is now 74 young! Many bumps in the road but he's strong like your Dad with a positive attitude, I try but there are times that I can't hold back my tears. I am so happy to have found this site.So many wonderful people and so informative.

Prayers and hugs coming your way!!!

Love, Lynn 💗

[Daddysdaughter in reply to ronnie1943]

Lynn, carotuximab is different it’s called TRC105, i haven’t found anyone commenting on this drug or study yet. I’m glad there are option but I hate the wait. These next 24 hours will be tough waiting till I speak with his MO. His PSA is soaring every hour of everyday.. yikes!!

Well, again thank you for your support and even just replying, I spend as much time as possible with him, he feels great and has no complaints and that is what’s most important. Have a blessed sunday🙏🏻❤️Thank you

[ronnie1943 in reply to Daddysdaughter]

Hi, I was mistaken the generic drug is actually spelled cabozantinib, that my husband is on. I should have looked up the correct spelling. When I read your post the spelling of your dads drug I thought looked to me to the same spelling.Actually, Sam is not on the generic, his is spelled. Cometriq. Same drug, different names. Happy to hear that your Dad feels good and in good spirits. That for sure is half the battle!! We will never give up. And it's so important that our loved ones know they have us who need them, it's keeps them going and a purpose for living. There is always new treatments out there. Most were not even available ten years ago.

Hope you had a blessed Sunday also. 🙏🏻

Take care, prayers and best wishes coming your way... Lynn 💗

[Daddysdaughter in reply to ronnie1943]

Hi Lynn how is your hubby doing? We need to move onto another trial/drug. So i was wondering if it’s still

Effective for him. We are looking into Carotuximab possible TRC105. Hope all is well!! Hugs 🤗

[ronnie1943 in reply to Daddysdaughter]

Hi, so good to hear from you and thank you so so much for asking about Sam. He's still on the drug cometriq, the targated thearpy drug.He is having some bad side effects, mainly the mouth sores they are so bad he can't eat. Went to see Sam's oncologist today, she was not happy about the weight he has lost. She now cut him back on the dosage, instead of three pills a day she has him now starting two pills every other day?? She said she will see in a month if this works.?? Also they took blood today so we have to wait until Monday for blood results. This waiting is the worst. I'm with you I feel like crying, it's so scary, I'm so worried. Sam has always been strong physically and mentally, not me so much! Lol!! He's in good spirits and stays positive. The dr. Said today that there was not to many options after this, maybe chemo, not taxotere, Sam was already had that.

Please keep me and the rest of us posted about how your Dad is doing and what is the next option for him?? Is the carotuximab a targated thearpy drug and taken orally or is it an infusion??

Take care, hang in there and know I'm here for you as is everyone on this site.we can never give up hope, we can beat this monster!!!!

Sending prayers and hugs!! 💗

Love, Lynn

[Schwah]

Please don't let them give up on him. There are new trials all the time. The best way to not feel helpless is to research online for new trials. Try the major teaching hospitals and other top facilities. Saying a prayer for you guys. Lots of stories about people turning it around when it looks bleak. Hope is powerful.

[Daddysdaughter in reply to Schwah]

Absolutely we are not giving up just afraid ( I am more so then my father!). Early next week we will have more info and i will for sure keep updating. Thank you for the prayers.

[leo2634]

Best of luck Daddy's girl never give up. a positive attitude and support go a long way. I'm a firm believer in both. You will be in my prayers today at mass.

[Litlerny]

So sorry to heR you got less than favorable news. I think that’s why we all akwYs dread those follow up visits with our MO’s. Try to keep your (and his) spirits up, and keep your team looking for an another treatment and/or clinical trial that will give some positive results. You will both be in my prayers this morning. Mark

[larry_dammit]

Hang in there ,will be thinking of you and your dad 🙏🙏🙏

[j-o-h-n]

Hang in there.... Trust me, your Dad will beat this. God Bless you, your Dad and family and friends (and all on this site).

Good Luck and Good Health.

j-o-h-n Sunday 04/22/2018 12:34 PM EDT

[ucladany]

Praying for you and your father.

[ctarleton]

Are you still investigating this?

clinicaltrials.gov/ct2/resu...

traconpharma.com/trc105.php

Good luck in your learning/searching for more possible treatment/clinical trial options.

Charles

[Daddysdaughter in reply to ctarleton]

Yes Charles it’s the clinical trial above.... I really haven’t heard anyone on this site that has been on this trial or tried this. Do you have any info on it? His medical oncologist is recommending that he might benefit from this..I don’t really understand it’s mechanism of action then again I’m still learning about all these different types of treatments.

[Daddysdaughter]

Yes Charles it’s the clinical trial above.... I really haven’t heard anyone on this site that has been on this trial or tried this. Do you have any info on it? His medical oncologist is recommending that he might benefit from this..I don’t really understand it’s mechanism of action then again I’m still learning about all these different types of treatments. It’s not an immunotherapy treatment or is it? Not much listing of the side effects.

Thank you Charles!

[ctarleton in reply to Daddysdaughter]

My read of TRC-105 is that it is something that may work to inhibit the development of tiny new blood capillaries and veins that some cancer tumors or mets might stimulate to develop to "feed" blood oxygen and other nutrients to the newly developing cancer where it is growing or trying to start to grow. Most of the healthy parts of our bodies already have an established, healthy set of arteries, veins, and capillaries that have nourished our normal cells for our entire lives. Rapidly growing cancer tumors or mets may actually "starve" themselves from the inside out if they cannot develop new tiny blood capillaries (i.e. the process of "angiogenesis").

The link above from Tracon Pharma lists a large number of Clinical Trials and Research Papers over the past several years that have attempted to see if TRC-105 might help in certain other situations/cancers in combination with other agents.

(The earlier FDA-approved Avastin (bevacizumab), which blocks angiogenesis by inhibiting vascular endothelial growth factor A (VEGF-A), was approved in other cancer types over a decade ago.) Neither agent is a chemo, nor an immune therapy.

Charles

[Daddysdaughter in reply to ctarleton]

Have you come across anyone with PC that has tried it? I just like to see what their experience was like and really how much did it help to slow down he growth?

[ctarleton in reply to Daddysdaughter]

I have not known anyone who has taken it for prostate cancer. The Phase I/II clinical trial in the link mentioned above to determine "safety" did report some results in 2015. It only had around 20 men in it. Only a few each received between 1 mg/kg and 20 mg/kg every two weeks. They did publish results for a few Serious Adverse Events:

clinicaltrials.gov/ct2/show...

And also some Other Adverse Events:

clinicaltrials.gov/ct2/show...

Any particular individual's "mileage may vary", as they say, of course.

Unfortunately, it appears that they were unable with these small numbers of men and with the actual progress of their disease to report on the outcome of Progression Free Survival.

"The study did not make it to the phase II (Arm 1-chemotherapy-naïve for metastatic disease (no prior antiangiogenic therapy) and Arm 2- post-docetaxel disease progression; evidence of disease progression despite prior docetaxel and bevacizumab) portion, thus no data is available for the phase II outcome measure "progression free survival".

Charles

[Daddysdaughter in reply to ctarleton]

Zytiga worked for a short period of time. Now metastasis has increased in nodes and bone. Our MO again recommend TRC105 or Lutitium 177 PSMA. We have an appointment with Cedars Sinai Medical Center on Monday. I and still waiting from a call back for trials on Lutitium here in the US. I’m beginning to think that going to Germany and having paying for treatment is the BEST option.

[EliasJ]

My heart goes out to you. I am equally disheartened with husband's lack of progress. He is on Zytiga now, first month. Even worse, I find his oncologist unfit - meaning, I can't find anything good to say about him.

Husband's numbers have been doubling every month since December 2017 up from 60 to 470.

I will pray for you and your daddy. May God bring peace to you as He does to me.

[ontheroad589 in reply to EliasJ]

Get away from the Zytiga- it is exacerbating his PCa. I had the same result - first month was down from 224 to 165, then held steady for a month, then doubled to 356 and then nearly double again in 4 weeks, then the MO pulled the meds. I found that both Xtandi and Zytiga acutally made me sicker, and my body totally rejected the therapy. Within 5 months my PSA had gone from 224 to over 2000, and I was needing bi-weekly blood transfusions, 2 pints of packed red cells at a time. Then my MO put me back on Docetaxel, and we are finally seeing the drop in PSA but my guess is I will never see 165 again before my journey is over. Bottom line is these drugs, Xtandi and Zytiga, are miracles for some with the right biology, but for others they can be the beginning of bad shit happening. At least that is my take.

[Daddysdaughter in reply to ontheroad589]

My father tried Xtandi and his PSA continue to rise. Then he did only four rounds of Jevtana/carboplatin And still his PSA continue to rise as well as CT scans show proliferation of the disease. At this point we are considering a trial or the possibility of him trying Zytiga. There has been some people that have shown that these medications work after having a few rounds of chemo.

[ontheroad589 in reply to Daddysdaughter]

Yes I have seen that is the case where Docetaxel was used then Zytiga re-challenged and it worked. I am waiting on the results finally of the genetic tests and then maybe we can make some plans - good luck to you and your dad.

[Daddysdaughter in reply to ontheroad589]

We are waiting as well for testing, MSI was negative and blood test really didn’t show any mutation that had treatments. Now waiting for biopsy results...

[Daddysdaughter in reply to ontheroad589]

Good luck you you as well we all need as much support we can get to battle this. Hugs to you🙏🏻

[dadeb]

There are still options out there and more coming every day. We’re showing some results with Erleada. We have a huge hill to climb from the slippery slope of the last 8 months of no treatments at all, but we have hope. Best wishes for you and your dad. Hang in there!

[Daddysdaughter in reply to dadeb]

No treatment at all. I hope and pray for your dad that something miraculous happens. Keep up

The hope! Hugs 🤗