Update and thank you!

[joekaty]

Wanted to update on my husband and mainly thank everybody for the kindness and support when Joe was in such bad shape last month. It was a scary, sad time and this group is the only place people really “get it” and I’m thankful for this community, which gives me the support I need to be able to be there for Joe and these 6 kiddos who are our world! We had the priceless gift of another Christmas together. Those are smiles of true joy! Things did get much worse after my post, to the point where hospice came to the house to meet with us. It was heartbreaking and there were so many tears but they were so kind and honestly it is a relief knowing they are there and will be there when they are needed. BUT, with an emergency steroid pack to counteract the effects of his trial meds (Ipilimumab and nivolumab) he made a truly remarkable recovery- has gained back almost all of the weight lost, pain manageable, and out of bed most days. At the same time, PSA continues to shoot up. As of yesterday was 150. CT last week was “stable” but he’ll have a bone scan and PET next week that should give a better idea (hopefully) of cancer activity. He saw his MO yesterday and he is clearly worried that Joe is not getting chemo. Joe had been very clear that if his PSA went up again he would stop the trial. I thought 50 to 100 would be clear enough for him- but then he started to reconsider, and even with this jump of another 50...he’s still considering. Trial Dr in St Louis is encouraging him to have another treatment. Each of the first two almost killed him, so I’m struggling with this recommendation. We go next week for scans and to “talk” with Dr. Pachynski- but an infusion treatment is scheduled and knowing my husband he’ll be getting it. The slight promise of truly being “cured” that Dr. Pachynski continues to dangle is just too much for him to resist. So...we’ll see. A week from now we may be in the same horrific place we were, or maybe we’ll be preparing to start chemo life again, or who knows. I definitely feel like I have no idea what the future holds right now but for at least another week- I have my husband back. We’re enjoying each other and our family and I’m going to try to really be present and soak in every second. Thankful for you all- for letting me vent and ramble and for your support. It is needed and it is always appreciated... Katy

[Schwah]

Thanks so much for keeping us posted. You have a lot of fans here. What a beautiful beautiful family. So happy for you guys that you could enjoy your Christmas together. You are incredibly brave and strong for your family. I know my family is praying for yours.....merry Christmas and happy New Years Joekaty et al.

Schwah

[joekaty in reply to Schwah]

Thank you. We appreciate prayers always!

[RalphieJr64]

Wow. What a great looking family. I read through some of your past postings to get a little familiar with your husbands treatments so far. What I got is he is not really responding to anything so far. 10 infusions of taxotere, xandi, and now this trial that he didn't handle well. And your MO would not recommend zytiga? Or did he try and this didn't work either. There are other clinical trial's out there. I'm on one currently. It's clicked for the last 16 months but it does come with some not too good side effects that does effect my quality of life. I just put up with it but I can understand your husband not wanting anymore harsh results. I hope something is still out there that will start working for him.

Ralph

[joekaty in reply to RalphieJr64]

RalphieJr64...so he did actually respond to all of the treatments- but the response was not lasting for any so he’s cycled through them fairly quickly. They aren’t recommending zytiga I guess as the chance of it working are slim and especially now that he’s been through xtandi? I think. He is not responding to this clinical trial but he has only had two of the treatments and I think he is still holding out hope that maybe the third will be the one that turns the corner for him. This is also, for reasons I will never understand, the only trial that has accepted him in 2 years of trying to get into a trial. It’s also the only one that has, reportedly, resulted in essentially a cure- albeit for a very small number of people and ones with specific bio markers- none of which he has. I don’t think he would have endured this misery with any hopes less than the potential of a cure... So glad your trial is working well for you! Regardless of what is going on with Joe it is always good and hopeful to see others having results!

[Longterm101]

Praying you have a joyous 2020!!! Keep us posted

[joekaty in reply to Longterm101]

Same to you! And will keep updating!

[Longterm101 in reply to joekaty]

At age 56 when I was DX and going thru this Terrible disease I have 3 small children so when I see your posts I want to cry !!!

Life isn’t fair !!

Hang in there

[tom67inMA]

So glad you were all able to celebrate Christmas together in what must surely be a very scary time.

I've recently been reading "The Emperor of All Maladies", about the history of cancer, and have reached the point in the 1960s when chemo started having some successes in blood and lymph cancers. Many experiments involved as many as 4 drugs in doses high enough to nearly kill the patients, but the result was that there were a few genuine cures.

I think I understand Joe's thinking: approved treatments have not had a prolonged effect. Going back to chemo likely won't produce a meaningful remission. Maybe the PSA is going up due to die-off. It's time for that last minute, all or nothing, Hail Mary play.

As crazy as it sounds, experimental treatment (this one or switching to another) may be your best shot to have many more years together. It's what I imagine I would do in his position.

[joekaty in reply to tom67inMA]

Tom67inMA you absolutely nailed it. He knows chemo would be beneficial- and also time limited. Although these treatments have been hellacious- he’ll do anything for the possibility of a true cure. It’s not my personal way of thinking and I think I’d make different choices but at the end of the day these choices are his to make and I do understand...

[greatjohn]

Hoping, praying, and sending vibes for a brighter & HEALTHIER 2020 for Joe...and the whole family.

it only takes ONE thing working to turn things around.

gJohn

[Lyubov]

Thank you for this wonderful update & including the photo of your beautiful family. It surely was a miraculous Christmas for you all! We will pray for you as you proceed. Happy New Year 2020!

[Collarpurple]

Oh my gosh what a sweet picture❤️

Enjoy every moment as. I know you are doing

Not his time God says and I am soo happy for you & family thanks for posting.

Wouldn’t that be great to hear No More

Cancer. Sharon

[JLS1]

Katy, I just read your story after searching for anyone on this thread who is in a similar situation as my husband - exhausted SOC and cancer in bone marrow. My husband is in a very SCARY spot right now as we desperately search for a magic bullet. His 4th injection of XOfigo lead to bone marrow failure, which excludes him from clinical trials!! He's currently getting transfusions, hoping his blood counts cam eventually improve. I hope and pray your husband is responding well now.

Hugs and prayers.

p.s. You have a BEAUTIFUL family!