I’ve been hiding from this site because sometimes I feel like I’m already drowning in cancer. Yet, I find whenever I post I have received useful information, kind support, and I hope pieces of our experience may benefit others.
We are nearing 2 years since my husband was diagnosed. At time of diagnosis PSA was 556, had metastasized to lymph nodes, bones, and bone marrow. Three week hospital stay, blood, plasma, platelet transfusions. Degarelix and Casodex tried first. First dose of docetaxel started in ICU and he survived to be discharged, wasn’t expected to live six months. 9 rounds of docetaxel, taken off my MD Anderson. Nadir was 2.28 I believe. Two months later PSA rising again and Xtandi started. Nadir .78, but after 4 months PSA started rising again. At my last post my husband was refusing chemo. Right after that we received a scan showing “innumerable” new lesions on his spine and ribs. PSA was skyrocketing, and he started chemo STAT. He was initially a candidate for Vision, but then wasn’t. UTSW changed his treatment plan to indefinite chemo, which is not acceptable to us. He has now had two docetaxel infusions, is still on Xgeva, Lupron, Morphine, Norfo. Missed last infusion bc he was in ICU with an intestinal infection- that’s us there in the pic! He is having one more infusion next week, though I wish he wouldn’t. I feel like this last one almost killed him. His PSA is down to 1.5, and we are seeing a Dr at the Siteman Center in St Louis who will be starting him on Provenge July 15th, after which they hope to have a trial recruiting again that he thinks could benefit Joe. So- that’s where we are. I am terrified right now. I’m falling asleep crying. I’m heartbroken. I feel like the writing is on the wall and time is limited. We are meeting with a palliative care Dr. in two weeks. I really just want to take Joe and our kiddos away and spend all the time together, so I hope Provenge is being offered with genuine belief it will be helpful, and not just as a last ditch resort, because it means that for a month we will be away from our children for a considerable amount of time. That’s where we are. Thankful as always for this site and the support we’ve gotten here!
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joekaty
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Sorry to hear what has happened.....Provenge is an appropriate choice IMHO....Has he had genetic testing?? That may provide another route of attack.
The Siteman Center is doing a vaccine trial for PCA....not sure if they would consider him, but there is some positive news put out by them not long ago on that trial....There is Lu-177 and AC-225 to consider as well....
It is the “BMS 650” at immunotherapy trial that would follow Provenge at Siteman. He has had extensive genetic testing and Foundation one report as well. They are going to do some retesting, and some additional tests too, and are trying to test for AR 70 (I think that’s what it’s called!) but insurance is pushing back on paying for it. We have been very pleased with Siteman and with Dr. Pachynski. He’s positive and he is kind...and apparently very, very bright. Fingers crossed!
I think it is the AR-V7 test? If so, I don't think it would make a difference in his treatment plan. It tests for a genetic mutation that makes the androgen receptor resistant to Zytiga and Xtandi, and he's already been there, done that. If it is a test for PD-L1, it may be worthwhile (see below).
The Checkmate 650 trial already revealed preliminary results. In the "CHECKMATE 650" clinical trial of a combination of the two checkpoint inhibitor-type immunotherapies, nivolumab (Opdivo) and ipilimumab (Yervoy), there was some response (in 25% of pre-chemo men and 10% of post chemo men) from the combination, but no response from either drug alone in earlier trials. However, all of the responders (60% of the pre-chemo group and 40% of the post-chemo group) had a high mutational burden and/or showed the presence of PD-L1 in the tumors (33% of the pre-chemo group and 19% of the post chemo group). Conversely, none of the men who had low mutational burden or PD-L1 had any response to the combination therapy. Toxicity was unacceptably high. They are reformulating the combination for future trials.
Well that’s concerning...I know the Foundation One report showed low mutation burden. I haven’t ever seen anything about PD-L1. Not sure if that would have shown up in the Foundation One report or not. If not, no one has requested he be tested for it. That all sounds pretty crappy, and I’m not sure why it’s being recommended... Any thoughts about receiving Provenge now? Thank you as always for your sharing your knowledge.
PD-L1 expression is rare in prostate cancer. They can stain a tumor tissue biopsy for it. I think Provenge is best used if combined with radiation or chemo - just my opinion.
Ok thank you. He’s doing one last chemo this Thursday his last chemo he got sick three times, the last one ending in ICU stay. Don’t think he can take more chemo. He was scheduled to do radiation before this at UTSW but there are too many lesions now and they aren’t differentiated from one another. He never had a tumor on his prostate. Don’t know how to explain that. It’s been “enlarged”, “appeared irritated”- but never any tumor. Prostate cells were found in his bone marrow. Thank you Allen.
This is part of the Checkmate 650 trial--BMS--Bristol Myers Squibb, I believe using Yervoy and Opdivo.... best of luck.... I would inquire if you could use hyperthermia with the Provenge treatment--see below:
And while this article talks about cancer in general, hyperthermia has it's own benefit by killing damaged cancer cells...and even damaging cancer cells...Worth a shot IMHO...may set the stage for hitting it with Opdivo/Yervoy....
My heart breaks for you🙏 I think the sadness and the heartbreak seems sometimes almost more than you can take my husband is just beginning this journey and there’s not a day that my stomach is not in knots I hope that you’ll be able to go take your kids and just enjoy all the time you have left with him and this medicine will work
Thank you Sharon. So sorry that you are beginning this journey. It’s been the longest two years of my life. You will find lots of support, information and encouragement here!
Hello Collarpurple, My husband too will be starting chemo in 2 weeks. It IS scary. One feels so alone, until I found this site. Thank you to everyone who shares their personal experiences along the way. Hugs....
Would you consider traveling to Germany or Australia to have joe treated with Lu-177 if he can get into a trial and provenge isn’t successful. We will help you !!!!
Yes, when he was declined from VISION, we looked into traveling to Germany for it. In fact, I think I found the information for an agency that arranges such travel on this site and we were prepared to move forward before Joe connected with Dr. P at Siteman. I will definitely reach out for information on that should we get to that point. Thank you so very much...
I’m so sorry for you. It sounds like the situation is pretty dire. I felt like we didn’t have time to fuss with a trial and then possibly not even receive the drug! We used Booking Health, they expedited everything and LED US THROUGH THE PROCESS OF GWTTING TO Germany for the LU177 and AC 255 treatments. We are now are in Italy on a bucket list trip before heading to Germany for treatment with LU 177 on July 1! We got it set up and paid for in under 2 weeks and here we are! If I can help you weed through the possibility of going to Germany, I am happy to help if I can. Otherwise I’ll be in touch afterward to let everyone know how it goes! Big hugs, hang in there, this disease is cruel bullshit for everyone! XO
Yes! Booking Health is the company I found digging through posts here. I can’t believe you were able to have it arranged so quickly! How awesome that you’re doing a bucket list trip first- way to LIVE!!! Please please update on how the treatment goes!!!! 🙌❤️🙏
Thank you. Kids holding up amazingly well. The oldest two are now both driving (very helpful!) and our youngest two, who were 4 and 6 at diagnosis are now 6 and 8. At that time, Joe’s biggest fear was that they would not remember him. What a gift the last two years have been in that regard. He is, yes, currently coaching a team for each of them right now and he’s done so throughout chemo and everything else. Was up at 7:30 coaching flag football for our 6 yo is at a basketball game now coaching for our 8 yo. I truly don’t know how he does it. He may spent 20 hours a day in bed...but he always makes the most of the time he’s not and there isn’t a chance in hell they would ever not remember him now. Helps a lot to remember things like that when I’ve been stuck in a very feeling sorry for us kind of place. Thanks for asking and for triggering me to me reminded of the blessings that have come with the pain.
They will remember how their Dad was always there❤️ And he still here more more memories🙏 I too cry myself to sleep I find myself just staring at him and it hurts .
I hope you have lots of support hope
At your age your parents are still here
God knows I wish mine were
The wives on here are really the only ones that really feel your pain and wish we
Oh I can so relate to the crying yourself to sleep and staring at him. 😢 I’m so sorry for all of us here in pain and struggling. We have a tremendous amount of support and I’m not sure what we would have done without it. My heart hurts for those who don’t have that. It is one of the ironic blessings of being sick young I guess. Our parents are both close by. They help tremendously. Joe’s parents actually rented an apartment about 5 minutes away so that they can be close to help. Will be praying for you too, and thank you for the “hug”. ❤️🙏🤗
"and are trying to test for AR 70 (I think that’s what it’s called!) but insurance is pushing back on paying for it."
Foundation Medicine offers financial assistance and will also handle your insurance related appeal themselves. In the last two months they have generously covered 100% of the costs of their Liquid Biopsy and Tumor Biopsy tests for me. My MO's office provided the application for me to fill out and sign. The link below is to the application.
This is awesome info. Thank you so much. I think the test is about $5000...which we will swing if we have to...AND I know as we run out of FDA approved therapies and look to things such as going to Germany for tx, we are facing a lot of out of pocket expenses. Cancer is unbelievably expensive. Thanks so much for this information. ❤️
Yes I was very much concerned about the costs of the tests as well. My MO insisted that I just have the tests and not worry about the costs, as "everything is one big negotiation". Approval for financial assistance from Foundation One took only one day, amazing.
What a beautiful couple. I do believe in God but sometimes I wonder why he allows such pain and burden to befall such kind people. But I keep praying. And I pray for you and your family. I too coached my daughters soccer teams for many years. She’s 30 now and still tells me those are her fondest memories growing up. So glad he’s able to do that. He sounds like an incredible man!!
A marvelous discussion of why pain, suffering and prevalent evil are compatible with a good and kind God is available in William Lane Craig's "On Guard", chapter 7, page 147 ff.
Good looking couple.... I bet the kids are too,, The apples don't fall from the tree. Joe is an inspirational to all of us. He's putting up a good fight and will definitely win it. He's got the spirit and a wonderful wife to yang him out of the position he is in right now. I will keep him and you and your family in my prayers and I can't wait till he beats his affliction....
Thank you. You are a huge source of support on this forum. We do have pretty amazing children. 😉Joe continues to fight but I have to say...in my mind he won this fight a long time ago. ❤️
My thoughts and prayers to you. It's good to be positive but don't be afraid to just look each other in the eyes and tell each other how much, how deeply, you love each other.
Agreed. He’s already won this fight. The miracle has already happened. Every day we have now is just bonus but I try hard not to take any one of them for granted- I know he doesn’t. ❤️
All I can offer is continued prayers for peace, comfort, strength, and so many other things. My husband just started this journey, my heart goes out to you all! May God bless and keep you! 🙏♥️
Hi and hoping you guys have great outcomes. Australia is far less expensive for treatment than Germany. If you have US dollars your currency is worth a lot here. Do some research and compare costs before you decide on Europe. Best wishes.
Ok good to know. We live in Dallas. I’ve always wanted to go to Australia anyway so that sounds pretty fantastic! Thanks so much for the information. 😊
There is a fine oncologist who specializes in prostate cancer. He is at medical city Dallas. He is with Texas oncology. It would be worth your time to inquire about him before running off 8000 miles ..his name escapes me. Good luck and god bless
Australia would be a wonderful adventure but you have to consider how much more expensive it is to travel there, particularly when talking about the multiple treatment schedule of Lu-177 and AC-225. Is AC-225 available in Oz? I know In Germany the drs are only permitted a certain allotment from the German govt every other month and then only twice within that month. So travel dates are somewhat constrained if on that drug. As far as costs, we were bowled over this past week when the University of Heidelberg informed us that they were crediting us back €3400 of the €9800 they charged for David’s first treatment! Apparently, his stay there didn’t “use up” all the funds they originally estimated. Can you imagine a hospital in the U.S. doing that? Not in this lifetime!
My heart goes out to you and Joe. You are a beautiful couple and the fact that you can smile during such trials speaks to your strength and your love.
So young to have to fight this beast. You are a great looking couple and being young will help. I'm in my second year and the Zytiga has worked for me. I'm sending some prayers your way. Gave up what few vices I had except for the ice cream. Can't help it. So many advances are here now to help us beat this. BTW, chocolate chip is the best, 3 scoops.
Laughed reading this. Joe’s given up pretty much everything. Alcohol, anything processed, meat most days, sugar most of the time. I’ll tell him to enjoy some ice cream with me- I eat lots!
Hello, my name is Phil and I am holding back the tears as I write to you, scrub that, my eyes are now leaking. I can't offer you any medical advice, just one thing. God does love you and your family, his heart is breaking at the suffering in this world, he never wanted it either and the day will come when he puts an end to it. We have all at one time asked why does God allow suffering, the answer is, it arrived in Genesis and finished in Revelation. Please take a minute to read Revelation Chap 21: vs 4 and 5. it will encourage you and your lovely family. You are in our prayers too, we are hugging you.
Phil, thank you for sharing so openly. I do feel God’s love all the time and see it in the people who surround us physically and feel it in those far away, such as on this site. I do know and believe strongly that God has a plan. I don’t ever believe there is pain without purpose...and I am determined to see the good in all the hard. There has been lots of beauty in the midst of the last two years, and I know God is with us. Thank you so much. 🙏
Sending hugs to you as you navigate this next part of your journey. You may not feel like it...but I can tell you are strong for your family. Keep us posted and grab strength from all of us here💙
So sorry to of the advancing cancer and you are in our thoughts and prayers. I hope the Provenge can give so relief and allow for some healing. I do hope he can get some relief and get into a trial.
Hi, my name is Lynn.. Countless times as I read these posts, my eyes fill up with tears. This decease takes away so much. My husband has been fighting this beast for ten years..started at age sixty five, now soon to be seventy six young. From the very beginning I've lived every day if fear. Its been a long journey, many bumps in the road. We are now going for the Lu-177 treatment.
We live in Philadelphia ... I'm sending prayers to you, your husband and children, you and your husband are such a handsome couple.
Keep up the fight, never give up and never give in.
Oh Lynn me too...seems like there was a time after I posted last that this site was hit hard with several losses...and it was overwhelmingly real, and hard, and painful. Every one feels so personal, doesn’t it? Honestly, yes my husband is young, and we’ve been fighting only two years, and that all frankly, sucks. But the people here I often find myself most in awe of are those such as you who have been living every day with the “what if’s” for 10 or more years. I feel like I’ve aged 20 years in the past 2! I don’t know how you do it but it inspires me and I thank you for that.
I am seventy five and I'm not very good with all this technology,..I received an iPad as a gift and trying to teach myself..Also not so well informed on this PC as I should be after all these years.. there are so many on this site that can help you with all that, but I do share your pain, I know all the emotions that go with watching our loved ones suffer.its a cruel disease.!!
Don't you give up hope, there are so many new treatments out there and more in the horizon that weren't even possible even a couple years ago. Take care of you and if ever you feel the need, I'm here for you, as everyone is on site.
Thank you for your post. I am not nearly as knowledgeable as others on this site, so I can't offer any suggestions for you. But- I do think your thoughts about this horrible predicament are in the right place. I wish you and Joe all the best.
Thank you. Honestly my thoughts have been (and still are) all over the place. I posted this after realizing I was so stressed I was going to have to start blood pressure meds again! Things feel more peaceful today.
I would definitely give Dr. Bob Leibowitz a call -- I had a phone conference with his partner about 2 years ago (right after finding out I had nymph node involvement) -- he has had remarkable results with patients in Joe's condition. He specializes in met PCa. and has 8 and 10 year survivors who had been given up on. His protocol has worked when all others had failed. I posted one of his videos explaining his treatment etc.
Yes, praying and also, fuck cancer. I’ve lost two uncles in their 60’s (brain and bladder cancer), my last living uncle is 65 with recurrent stage 4 colorectal cancer, and I just turned 40. It’s a beast.
Ok, so this is my take. Do only palliative treatments and make this the most loving magical moments with your husband and children that you can. Be quiet all together. What a opportunity you have been given.
I agree and very much feel that way. Joe doesn’t. Sometimes “fighting” is resting and enjoying your family and the gift of time left. Joe isn’t there yet and maybe will never be, and I’ve had to accept that’s ok too...
6 kiddos. Oh my! It does so leave me heartbroken when I am almost 20 years older than those who have this disease. I have no advice. I do so hope you can find a trial that can make a difference. You are now the rock. All my prayers to you and Joe.
Dear joekaty, Our prayers and love go out to you both and the kids too. This is a brutal heart wrenching disease . I’m sorry for this suffering . We all must pay this tab sooner or later .. Keep loving each other in this storm . 🙏
“We all must pay this tab sooner or later” that is the truth. Every day could be any of our last days. We do have a lot of love and going through this together has made it stronger than ever.
A lot of love is wonderful . We share the pain ,love makes it better . Once decisions are made he can do as well as as anyone . He has many reason to survive this . We are all pulling for you,your husband ,and the kids . 🙏
Judging from your picture you guys look pretty young.
My first reaction when I hear about young folks with aggressive PC is to recommend a gene test. I was myself diagnosed with PC at the 'youngish' age of 54. In the process I discovered that I have a BRCA2 gene mutation.
This is an important discovery since there are additional treatments that might work better.
These days the test is very affordable (used to be many thousands) color.com If your husband hasn't done this yet I totally recommend it.
Yes, two years ago when diagnosed joe was 50 and I was 38. He did all the genetic testing through an office within his oncologists...he was negative for everything. His mother had non-hodgkins lymphoma at 60 and dad has prostate cancer (they removed it with surgery) at 60 as well. They’re now 80 and in perfect health! Joe’s was just a fluke. Ironically, I am the one who tested positive for BRCA 1...though I haven’t done anything about it bc too busy with prostate cancer. Really anyone with history of cancer in their family should have this testing done!
I was 53 upon dx .. He is so young .. This is in his favor to endure better.. My theory is that the younger we are the harder the hit taken..we should have had another twenty years to secure things . Keep your faith ..
From everything I have read - and I have researched extensively - Provenge would not be indicated for someone in your husband’s condition. It doesn’t decrease PSA nor does it stop the progress visible on scans. It was shown to increase OS for about 4 months, and about 12 months in men who received it when their PSA was low. Mechanism unknown. Please get a second and third opinion. Four months after receiving it, my husband’s cancer has further spread and is leading to major problems. I don’t believe you will regret foregoing Provenge but you will regret the lost time with your children. I think that palliative care is definitely indicated. I am facing losing my husband in the next 6-12 months. We are just 15 months post initial diagnosis. I feel your heartbreak.
Agree. We have been to: Dr. Corn at MD Anderson, Dr.,Staddler at University of Chicago, Dr. Courtney at UTSW, Mary Crowley Center in Dallas, along with our regular MO in Dallas. We saw Dr. Pachynski at the Siteman Center in St Louis and he is the only one who has recommended Provenge. Everyone else at this point recommends indefinite chemo- not an option. Joe has experienced intense pain and cancer related symptoms since diagnosis and has been on Morphine since then- which doesn’t come close to covering his pain. Everything I’ve read also suggests Provenge is not appropriate and I also would prefer he not do it. But, it’s now been offered...and offered with hope, and Joe won’t turn that down. When I suggested we not do it- my sweet, kind husband did not speak to me for 24 hours. We do have an appointment with a palliative care dr- if I can get him to go. I am so sorry for your situation, and I am for mine. We are 22 months post diagnosis- August 12th 2017. Was feel your heartbreak too. Sending hugs your way...
I would ask the Doctor who recommended it to withdraw his recommendation for your husband’s sake. Tell him that three other doctors do not recommend it and you feel that he is giving false hope. No only that, because your husband is desperate for hope, doing this treatment will mean precious limited time taken from his family. He can tell Joe that upon further reflection, consultation, etc., he has changed his mind about its appropriateness.
I am going to reach out to him and just ask that he be honest with my husband about risk vs benefit. I have been shocked by how difficult it seems for oncologists to be honest with their patients. I’ve told every one right up front- we have six young children- please update us should you ever feel that things are dire. Not. One. Has ever had the ability to say that...yet at last hospitalization the hospitality and nurses inquired as to whether my husband was on hospice. Seems everyone is talking except to us...
If you and your husband have not yet read Atul Gawande's Being Mortal, I think it would help you both to read it together. A lot of the book is about long-term care, and you can skip that. The sections on doctors' deficits in handling terminal illness are very insightful. Ira Byock's Dying Well is also very helpful.
I cannot give you any medical suggestions as I am just early in my own PCa and have not yet become conversant in the "lingo" of this beast. But I can give you my heartfelt sympathy and wishes that your family will come through this ordeal. Your story just breaks my heart and please know that your fellow sufferers on this site are sending good vibes to you all. We are all on this awful journey together.
Sending positive thoughts and prayers. My husband recently had Provenge but he's still working and is pretty healthy. He wishes he hadn't gone through it - it was very hard on his veins but your husband probably has a port so it should be easier. But a month away from your children might not be a good trade off for something that really doesn't have any real track record of knowing if it works. When we get to the point you and your husband are at, I think I would suggest to him that it's time to have as much quality of life as possible and to stop trying every treatment just to have a few more months. But in the end it's what your husband wants to do.
Please take advantage of what Palliative care has to offer.
1. John H.11/03 - 61 years old; PSA 3346; gl. 4+4/8 @ JHH; 22 lb. weight loss, severe bone pain. He was referred to the Hospice Service at his HMO.He was told to get his affairs in order because it was unlikely that he would survive more than a few months.Treated with 13 months Triple Hormone Blockade®, 15 doses Taxotere/Emcyt/Carboplatin chemotherapy, and anti-angiogenic cocktail.1/05 - stopped hormone blockade, continue cocktail and add high dose testosterone.
When i start to feel like i got a bad hand ....i am always humbled....i see the love in your eyes...qol.. make it the best you can.... its uncurable... we all have beeb told....dragging it out in a hospital....wishing on a star....take him and yours on the trip of a lifetime....make memmories ...not apts......krass.....i think not...
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Helps a lot to remember things like that when I’ve been stuck in a very feeling sorry for us kind of place. Thanks for asking and for triggering me to me reminded of the blessings that have come with the pain. 
Update and question
Good News Update on my Joe
Update on my father. Triplet therapy?
Decision time on Tuesday morning after progression shown in scans
