Hi my heros 💞My dad is very sick, can barely stay awake , and rt now on break from stage 1 trial of a chemo that he has done every three weeks for far too long until his body gave out and he just became too frail and weak. His PSA was even higher but right now it's in the 100s. I may need to correct that and get the exact number but he also did immunotherapy bf do I don't know how much it means by itself . He's exhausted beyond words, often too weak to talk, can't leave house so wheel chair but has not left at all bc he's in bed . He has smoldering leukemia as well, but hemocritin I think was only slightly off although I feel his body is not getting oxygenated . Blood work shows nothing but I'm watching him fade away dying in my soul,crying every minute of every day not knowing . He does not want to give up . We did the entire normal protocal . I have wrapped my arms around him like a lil girl and layed with him . He's not just fighting for me as I would not be selfish but he loves life so much and he'll do anything .Any suggestions any hope please. Desperate and petrified in tears , Erica
Dad very SICK. any treatments ANYTH... - Advanced Prostate...
Dad very SICK. any treatments ANYTHING to give my dad his smile back and extend his life . I'm begging for your help in tears .
Note his widespread Mets have barely changed . I heard something about testing genetics or testing the cancer heard lu 177but in passing and if there's anything else please I beg you even trials that seem promising . We are in nj 15min from NYC .
Whoah , dear loving child , I say that the wrapping your arms around him like a lil girl is the best med in the world .. Love rules the day . This is a brutal path for us men to travel along . I saw my own dad after and RP and he was waif like and gaunt . A yr later at 71 he was gone by a heart issue . I know how it feels to see your hero suffering . My dad is still my hero after being gone 23 yrs now . They are in our dna . I was in a chronic fatigue not much Hope stage for about two years . I was just 53 . Somehow I’ve scraped by . Lots of prayers and love at home are key to me .. Love him mucho . ! That’s all that matters 😔🙏
I'm sorry and I already have several diseaess and I'm just getting so sick bc I can't stop crying and panicking . He's still with us . Please pray for us . I feel so alone
Dear Erica - Lost my Dad to d*mn pancreatic cancer in 1995, he was only 67 and I was there with him when he passed 
Lu-177 can only be done if he has PSMA activity, which I believe 80% of PCa has. I had mine done under Kaiser Medicare in October.
Check with his MO if that is an appropriate next step and also check what kind of scan that they have planned. Next best to PSMA is an Axumin, but not a glucose based one such as FDG
Prayers and a Big Hug from CA.
Randy
I’m sorry about your dad .. 😩
Psma scan was today
my thoughts and prayers are with you🙏🏻🙏🏻 and your father🙏🏻🙏🏻 Stay strong. My wife and I are both battling this terrible disease and do a lot of praying . God bless you both🙏🏻
🙏
Please don’t take the world on your shoulders ? Stay level . He’s need s you so . It must terrible for you to be sick yourself and now so worried about him also ? Hang in there ,loving child . You are not alone in this . We have many men in their 40’s with this dreaded disease and young families at home . The poor wifes and kids . That’s super bad . I can’t say anything good about pc . But , I do know that panick ,fear and even too much crying can wear one our quickly .. I pray for your love for each other to only increase…. My dad was a stoic man , raised in the Great Depression . He was taught to never show emotion . I never saw him cry.. He told me the last time that I saw him that he loved me . That was the first time he ever said that to me . He was saying goodbye .. I was around 40 at the time. A month later he passed ..3 months later he came to me in a dream . Cloaked in white ,flowing white long hair and beard and said to me “I’m OK “! That was it . That’s all I needed to hear . I’m at peace with my dad . Im not saying that your father is going anywhere soon. Imho he is in gods hands . We all are . We are not in charge of life or death .. A loving parents influence is with us for our entire life .. and after ,is my belief..they never leave us . Love is eternal . Prop yourself back up and try to keep him up emotionally! If he sees you suffering too he will feel worse . With Getting Advanced cancer we go through staging of grieving . The family too . The most important step in recovery is acceptance of our lot in life and to iaccept that we aren’t in control . All you can do is show him love . You’ve got this! You’re caring . A wonderful daughter . I wish that I had a daughter such as you . My estranged daughter is now 42 . She told me “ You’re a sad man “! and hung up the phone on me seven years ago when I got cancer . I pray that she is well . I know she is . She just holds a grudge .. you don’t have that between you and your dad . Much love to you and you dad . I pray for miracles and for you and him to feel better . Hang in there baby! Scott ❤️🙏
No genetic testing please explain bc I'm shaking and have been crying 12 hours straight bc I fear losing him . He's getting a scan done full body to see how much of the cancer is dead bc it's not that the Mets are growing . I just need to be held. I was so strong and I'm falling apart
If you are able to create a little background and case history of your father, good people here might be able to offer you some ideas.
Ok I did in my profile earlier on and we have now exhausted all the regular treatments and he did a stage 2 chemo trial until his body gave out and he was too weak and felt the chemo was killing me .last Christmas we found out he also has smoldering leukemia. His PSA never ever went to zero but crept up to below 200. Through 6 years most Mets did not change though he has one in lung and all throughout bones. Psma pet was done today and we won't have results for that till next week. Nothing in blood indicates the leukemia progressed that much but the chemo trial has been too abusive to his body and he stuck with it until he simply knew it was more of a danger. Lost much mobility esp since scans revealed changes in lumbar spine that are causing him to scream when he moves. They don't even think it's the cancer causing the impingement but disk and arthritic issues and we'll be getting another MRI. Please tell me what more I should add to give the full picture bc I feel so down. And flattened. I'm disabled bc of auto immune diseaes and spinal issues so I'm feeling sad bc I live in the pain he's in and I know what it's like to lose mobility. Please make me a list of specific questions so I can make his history clear bc I'm honestly so spent I can't think straight and I'd greatly appreciate the proper questions that would help me find info. Much love. I appreciate you so much ,all of you and ty for taking time for my dad and I.
Mother nature came and gave me a flick to my prostate.That's the deal, how am I going to enjoy the time on offer.
Not live in fear.
How will I live in this day only?
How will I do it again at the start of each new day.
How do I want my 15y old twins to enjoy there time with me?
Sometimes prayers can be for acceptance, peace, living in the day?
Some times getting clear facts, push for tests to get a clear picture, and sometimes a new opinion???
Hang in there. We all go through the same ordeal. He is lucky to have you. Just being with him would help him. 😊
Erica, I wish there's something magic I can add, but reading your post I think you hugging him and laying with him is probably the most wonderful thing you can do for him.
Kindest wishes to you both.
Hi Erica, I am sorry to read about your grief. My husband is 57 and on slow release morphine and other painkillers. His chemo failed and he has a PSA 1380 at the last check, mets here and here in the bones and now in some lymphs. It is heartbreaking to see his mobility decline. I am trying to keep calm for him and hopeful. I try not to focus on the future as that can be petrifying and not helpful in the moment. Life sends these very tough things to us and tests our love and strength but I try to think that our guardian angels are still around us, helping. Whenever we despair, some little helping hand comes from unexpected sources. Healing can still happen for the mind and soul even if a cure for the body is difficult to find. We went to a Beatlemania concert two nights ago; the band was great, my husband was joining in the singing (he is a good singer), forgetting his pain for the evening, and the message in the songs simple. Love is all that matters. Love is all you need. I add to that, love can heal. Sending you love and light.
” Love is all there is”! Music heals the soul . 👏👏👏🙏
I cherish your message and firmly believe in it . Tysm 😊❤️❤️❤️🌹
I clicked on this link and was happy to see my husband's terrific MO in the brief video. Paul has recurrence after 2.5 years remission. He had a biopsy of L3 this week and that sample will go for somatic testing. Dr McK has also ordered germ line testing.
Daddyishealing I have learned a lot by reading this forum. The knowledge has empowered me in interactions with his doctors. I knew enough to ask for somatic testing in case the PCa had mutated since his 2017 initial diagnosis. His MO is open to any and all questions and engages my husband in decisions about his treatments. I hope your Dad has an MO at a cancer center of excellence. Ask questions here and advocate for your Dad with his doctors.
Tysm I'm going to ask bc I've tried to get him to get genetic testing but he hadn't so somatic testing and germline testing correct?
Yes. Somatic is testing the biopsy and germ line is your Dad's genes testing.
Hugs💗. Mary
I would suggest a high lycopene diet and use of heating pads on mets...little cost and no side effects. I think that's what you are asking for. Best wishes.
😭😭🙏🙏. So terrible to watch, just love him, hold him and be there for him ❤️
It may be late in the game but checkout mycancerstory.rocks
Joe Tippens Protocol. I am two years in since diagnosed and so far, so good.
❤️ I do not have advice. But sending big hugs.
❤️
How sweet. Right back at you. I definitely needed that 🤗🤗🤗
God bless you Yingsang! Thank you! 🙏😔
dear Erica ... so sorry for what's happening ... consider checking-out envita.com ... i've said a little prayer for you and your dad 😃
He already has smoldering leukemia so would lu177 not be an option . Any thoughts on bat therapy . Love and prayers on going 💜❤️ tysm
Ty for such a wide breath of information. He is still on lupron . I assumed trt means testosterone replacement? So is there a connection btwn the stuff that destroys your testosterone?
He had infusions at one time I believe platelets and I think he was also anemic . He had anemia as a child so that part didn't surprise me , but the leukemia dx did . I feel he's not getting enough oxygen but last summer he actually could not breathe if he walked a foot and he researched and went to hematologist so the infusions we're done , but with the trial he was in of chemo stage 1 trial I feel like they did his body in and he has the option to continue bc there's no cancer growth but hes barely able to walk rt now and they don't know if it's the Mets in spine or just arthritis and disk issue both which I have and the person who did report felt it was not the cancer but I have no access to his portal to understand bc he wouldn't let me be involved prior . They want him to get another MRI but now not only is he exhausted he lost mobility and is screaming. In pain and on oxycodone bc it flared back up which is why I don't believe it's the Mets m either way we are in a bad situation and need prayers . I'm so lost I've lost my ability to even pray or meditate . Ty for so much detail m I'm so impressed by you and I hope hugs ,health ,and laughter rule your life . Xo Erica
Actually one person said it was the cancer another radiologist said not the cancer . I'm familiar with those procedures bc I ,mysrkf,had lumbar injections facet joint injections and I'm in some bad shape epidural also didn't work ddd, AS, arthritis etc so very familiar . I know a Dr who could treat him if it's not the Mets and if it is the Mets then what ?
I'm not sure bc I can't see his MRI and he needs another . 6 years ago the cancer fractured his pelvis and that's how we found out . So yes having Mets through entire body there must be that as well but bc it eased up a few weeks and then flared up I do know there's arthritis and I remember ddd on him long ago. I'm trying to get the MRI report .
He seems to get more relief lying on back . The nerve pain is going through both hips and into groin and it's his right leg it makes him scream to move which put him in the hospital over a month ago and they first said it's the Mets then said they don't think it's the cancer bc in his words his doines all messed up . Having AS and ddd myself , if I had the reports I'd understand more but they say he needs another MRI which is ridiculous bc this MRI was recent maybe they didn't use contrast idk bc I'm just starting to beg for access to the portal bc I can set him up with pain MNGMT by the most gifted hand in NJ .
If it's the Mets as well what as degenerative changes what are our options ? I believe it's all three prob and I tried to get him to take gabapentin to see if it helps bc he's been on it bf for a cough he got bf PCA was found ( he has one met in lung that never changed ) but he's waiting on Dr . He would never tell me the number of Mets bc he was trying to protect me but from the start it did hit all his bones
Btw just I love you for taking the time to try to help me help my dad . You are such a good soul and I'm sorry to be a burden and do appreciate your feedback already
So pain radiates down legs esp rt leg down hips a pain I know we'll but his also goes into the groin and I don't know which nerves except to assume s1 to l5 but if it is the Mets too can pain MNGMT not do any of the procedures ?
I wish you so much health love and laughter ❤️❤️❤️
I also had a sciatica nerve pain and it went away after starting Degarelix ADT.
It is a cancer in the spine.
What class of drugs . Is that like lupron ? I'm so glad you got relief . I live in severe spinal pain and nothing has helped so I truly understand the pain part but to be so brave in the face of cancer .. you guys just amaze me truly !
You need good team of doctors. I hope you have a team. RO, MO etc.
After more than 4 years since starting ADT i am still on the same injections Degarelix (Firmagon).
I didn't change as my PSA is still low, under 1.5 and I don't have any visible mets on the PSMA PET scan borbom the FDG PET scan nor on the nuclear medicine bone scan, nor on the CT scan.
My prostate is 95% full of cancer and there is a vesicle involvement.
The SUV max is 14 on the PSMA PET scan of my prostate.
It sounds like you have much joy ahead of you .. my dad was dx six years ago but they found cancer seven years ago and he didn't get biopsy so he's had much longer . At dx he was already full of Mets through every bone and with current advancements I think you are going to persevere . I will always be here to support you and others ❤️❤️❤️❤️
I knew in November 2017 when my PSA was 20 that I have a cancer. Unfortunately my PCP thought that I just have an infection and wanted to treat me with antibiotics.
I had neurological symptoms but they just recommended me to take magnesium what I was already taking.
Therefore I am already 5 years diagnosed by myself.
I didn't star Degarelix injections until June 2018 because I was waiting for my four x PSMA PET scan to start.
I wanted to participate in a study ADT & me.
Were you on other adt meds prior and switching helped you ?
That was my first therapy after the diagnosis.
I am still on the same (Degarelix).
I hope that you have a medical oncologist? Can you consult him?
Yes we will . I'm glad it's working for you just so you know my dad has had pca 7 years that we know of and was dx at stage 4. You have a long and joyous life ahead and there will be so many advancemennts so I truly wish you well.
Ok ty so much I have ddd and s1 l4l5 main generator but i have been told since my whole spine is involved surgery is not an option but I have been wanting a replacement disks .. problem is that I also have arthritis in the facet joints and other herniated disks . Sin e I have you and you are so e versed curious if you know of a great spinal specialist for disk replacement . My dad I'm setting up MRI and if it's the Mets idk but I have to assume all at play
Could they radiate the visible mets in the spine? You should get a PSMA PET scan and see the RO?
Could you get the liquid biopsy and see if Keytruda or Olaparib would be effective? (You need 1 month to get the genetic test results back.)
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