Good news among the bad Over 6 months . Stage ONE TRIAL WORKING, .😊 NO CANCER PROGRESSION HUMC NEW JERSEY

[Daddyishealing]

Bc his PSA was rising and could t stay awake we assumed Mets grew or cancer progressed but since dx 6 yrs ago at stage 4 filled with Mets in every bone and one in lung, his cancer never shrunk but stayed the same with only very slight growth in some Mets and his PSA never went to 0 like others have but treatment did lower it and I'm not sure how much of an indicator the PSA rise actually is once you have done immunotherapy . That someone would need to explain.

Ok , bad news needs infusions immediately bc of I think hemoglobin or hemocritin. His body is not getting oxygenated properly and he's beyond exhausted Once he releases portal to me , I can get this clear bc I'm not sure if he needs blood platelets or iron infusions as he had both bf ever starting this trial after dx with smoldering leukemia last summer BEFORE entering this trial .

I'll have the full report this week and I'll be staying with him four days and ill be able to document history better .

He is very weak frail and due to spinal pain has lost the ability to walk much at all but got to car , gets to bathroom , and

Some days down four steps to his couch . First MRI they said it's not the Mets but needs another MRI read by diff radiologist.

Ok the good part and frightening part . The trial I was told is " chemo like " and it's every three weeks indefinitely. FOr the first ten days after each treatment he was never well then would start to get more good hours and do something each day until the next round . It's saving his life but kicking his ass and I assume making his pre existing blood issues worse . The Dr believes he should continue with the trial and it will be entering stage two soon I believe . I will put up another post asking anyone with pre leukemia and crpca to engage ,BUT IF YOU HAVE BLOOD CANCER OR PRE CANCER AND PCA PLEASE SHOUT IT OUT .

anyone needing this study info I'll be getting access to his portal and able to get study link if you wish to follow for that I just wanted to share some hope and lyk he even went on a vacation once during this treatment and he usually went out to dinner a couple times a week just not the chemo week bc he's mostly asleep. indefinite chemo or "chemo like" drug def takes a toll but for those who exhausted all treatments it's worth knowing this trial is out there . Pm me if in need of the info immediately.

My father is not in good shape but this is our first win in a couple months when his body got too weak and due to spine issues moving also a lot of muscle atrophy bc he never was an exercising person or in good shape but a workaholic who did not stop his retirement work until now ( buying and flipping houses ) .

I also want some to know that his cancer has barely changed since he started treatment 6 years ago dx when the cancer was so far spread through all bones. The past six months or so on this trial he has had full ability to drive and with some type of pain management we hope to get this part back . He was at a point of getting 4 solid good hours a day bf his back went and he got bed ridden .

We got our Thanksgiving miracle ☺️

Love and healing and laughter to all xo

Erica

[FormulaRob]

I’m just stopping in to say I’m happy to hear you got something positive despite all the darkness. Seeing and knowing my father is fighting this stupid disease is just killing me. Reading through your posts I can see how much you care and are there for him and it’s beautiful to see. He is lucky to have you and I wish both our dads success in this fight.

[Daddyishealing in reply to FormulaRob]

Your message inspired me to keep up the fight now and forever bc your community is now part of me and raising awareness part of my life . Ty for these kind and special words that warmed my 💞heart. Smiles, gentle hugs, laughter , and love . Here for you and anyone who needs me xo Erica

[CutterJ]

glad to hear there are some bright moments for your Dad. I have had 2 different cycles of Taxatore. At present, I am being treated with Cabazataxel. The first cycle of Taxatore reduced my PSA to .02. 3 years later, it did not seem to reduce the cancer significantly. Taxatore did not seem to affect me much, but the Cabazataxel has given me a slight chemo brain feeling and a general feeling of fatigue.

Tell your Dad to keep fighting. There are new treatments for PC everyday.

[Daddyishealing in reply to CutterJ]

If any new treatments coming out for crpca please do share . I love research 🤕,but I'm a lil ' emotionally exhausted .. I will definitely tell him your words of encouragement and deeply appreciate you ! Hope treatment goes well and you capture all the great years and tiny moments ahead . Keep rocking my friend !