Dad very SICK. any treatments ANYTH... - Advanced Prostate...

Advanced Prostate Cancer

17,235 members21,154 posts

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 .

Daddyishealing profile image
52 Replies

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

52 Replies
Daddyishealing profile image
Daddyishealing

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 .

smurtaw profile image
smurtaw in reply to Daddyishealing

Has he had a genetic test (somatic - NOT herited germline test).

Does his MO have any suggestions? Have you gotten a second (3rd or 4th) opinion?

My dad went from cancer and it is not something you want to hear, but for his own comfort he went into hospice towards the end. So at least he was in a comfortable environment when he went.

But I would talk to his MO and get opinions from other MOs before I did that.

Daddyishealing profile image
Daddyishealing in reply to smurtaw

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

smurtaw profile image
smurtaw in reply to Daddyishealing

Virtual hugs. Hold in there, please.

Genetic Testing for Prostate Cancer | Prostate Cancer Foundation

pcf.org/patient-resources/f...

Emmett50 profile image
Emmett50 in reply to smurtaw

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.

Daddyishealing profile image
Daddyishealing in reply to Emmett50

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?

Emmett50 profile image
Emmett50 in reply to Daddyishealing

Yes. Somatic is testing the biopsy and germ line is your Dad's genes testing.

Hugs💗. Mary

Lulu700 profile image
Lulu700

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 😔🙏

Daddyishealing profile image
Daddyishealing in reply to Lulu700

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

dockam profile image
dockam in reply to Daddyishealing

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

Seasid profile image
Seasid in reply to dockam

How many Lutetium PSMA infusions do you plan to get?

Lulu700 profile image
Lulu700 in reply to dockam

I’m sorry about your dad .. 😩

Daddyishealing profile image
Daddyishealing in reply to dockam

Psma scan was today

Bunkerboy profile image
Bunkerboy in reply to Daddyishealing

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🙏🏻

Lulu700 profile image
Lulu700 in reply to Bunkerboy

🙏

Lulu700 profile image
Lulu700 in reply to Daddyishealing

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 ❤️🙏

meowlicious99 profile image
meowlicious99

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.

Daddyishealing profile image
Daddyishealing in reply to meowlicious99

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.

Mrtroxely profile image
Mrtroxely

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???

anony2020 profile image
anony2020

Hang in there. We all go through the same ordeal. He is lucky to have you. Just being with him would help him. 😊

CSHobie profile image
CSHobie

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.

spw1 profile image
spw1

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.

Lulu700 profile image
Lulu700 in reply to spw1

” Love is all there is”! Music heals the soul . 👏👏👏🙏

Daddyishealing profile image
Daddyishealing in reply to spw1

I cherish your message and firmly believe in it . Tysm 😊❤️❤️❤️🌹

NecessarilySo profile image
NecessarilySo

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.

larry_dammit profile image
larry_dammit

😭😭🙏🙏. So terrible to watch, just love him, hold him and be there for him ❤️

Fash01 profile image
Fash01

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.

Yingsang profile image
Yingsang

I do not think that further abuse to the Bone Marrow with Lu-177 is appropriate after all the chemo that has been done to date. Others have offered suggestions. But they are for the most part not professional Prostate Cancer experts. I like what Mr. Lulu said, that love rules the day. And I would also add Prayer. If you would like send me a private message, and we can pray together.

Lulu700 profile image
Lulu700 in reply to Yingsang

God bless you Yingsang! Thank you! 🙏😔

Daddyishealing profile image
Daddyishealing in reply to Yingsang

He already has smoldering leukemia so would lu177 not be an option . Any thoughts on bat therapy . Love and prayers on going 💜❤️ tysm

Yingsang profile image
Yingsang in reply to Daddyishealing

An expected side effect of TRT is an increased level of of red blood cells, which can be demonstrated by measuring Hemoglobin and Hematocrit. This is a positive for men with Anemia. But is it a positive for those with Leukemia? There is an old research paper from 2005 which can be found in JSTOR. It is titled 'HRT is not associated with an increase of Leukemia risk.

At our clinic, we have not treated any Men or Women with HRT, when having Leukemia.

So BAT or TRT may be of benefit, but extreme caution, close follow-up is advised. You should contact those that are doing BAT trials, like Sam Denmeade at John Hopkins. I do not know if he would respond, but I expect someone would be able to help you in his research group. They should have data as to your question. There may be other members that have Blood Cancers, and are using TRT, or BAT. You can create another post, to see if others with Blood Cancers are using Testosterone. I am so sorry I cannot be of further help.

Daddyishealing profile image
Daddyishealing in reply to Yingsang

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?

Daddyishealing profile image
Daddyishealing in reply to Yingsang

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

Yingsang profile image
Yingsang in reply to Daddyishealing

There is Erica, a very close relationship between the pain in the Lumbar Area from osteoarthritis or degenerative arthritis, and the pain from Mets, to that area. An MRI can assist in making a determination. You seem to be sure it is not the Mets. You may wish to engage a Pain Clinic. One that can do procedures to reduce the pain if it is all osteoarthritis. If the Sciatic Nerve is involved there will be pain radiating from the SI Joint as well as the notch in the buttocks, between the Glute Maximus and the Piriformis muscles. When activated, the pain can be replaced with an inability to take a step, as there is a loss of feeling, which can be intermittent, with the pain. Sleep can be disturbed. The best position is to sleep on one's side, with the legs drawn up in a 90 degree angle.

Depending on where you live you may find a Pain Clinic that can perform Coccyx Pain numbing injections, as well as RFA[Ablation to the nerves causing the pain]. This procedure can offer sometimes 1-2 years of relief.

But before any non surgical procedures can be determined, identification of where the pain is coming from must be determined. Some large Orthopedic Medical Operations, also offer Ablation, Facet Blocks, and Coccyx injections.

Erica, you really need to eliminate that it is not Mets. We have seen patients with both, having Mets and Sciatica, coming from the L-5, S-1 area tracking through the SI Joint to the Piriformis Buttock Notch. Treating both at the same time may be possible, but I have no knowledge of this. From my point of view, the cancer comes first. But as you said there may not be any Mets, and then you will have to treat the lower back pain which is causing the walking debilitation, you describe. Pain Clinics can also do or order MRI's.

Daddyishealing profile image
Daddyishealing in reply to Yingsang

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 ❤️❤️❤️

Yingsang profile image
Yingsang in reply to Daddyishealing

I do not have an answer if both diagnosis's are positive. But if the pain is Isolated to the Nerve Bundles that feed the Sciatic Nerve, then you may wish to engage within a Pain Management Group, an expert in Radio Frequency Ablation. The way you just described the leg and groin pain, if from Degenerative Disc Disease, I can guess that involvement is L-4,L-5,and S-1. Bilateral Ablation for both sides, with concentration on the right side can be done in one session. Hoping it is not Mets. DDD can be treated today much better when there was just Barbaric Surgery with screws and plates. Today replacement of disks that will outlast the body, is available. I would be more concerned about eliminating the Mets as the main pain generator.

Seasid profile image
Seasid in reply to Yingsang

I also had a sciatica nerve pain and it went away after starting Degarelix ADT.

It is a cancer in the spine.

Daddyishealing profile image
Daddyishealing in reply to Seasid

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 !

Seasid profile image
Seasid in reply to Daddyishealing

You need good team of doctors. I hope you have a team. RO, MO etc.

Seasid profile image
Seasid in reply to Daddyishealing

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.

Daddyishealing profile image
Daddyishealing in reply to Seasid

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 ❤️❤️❤️❤️

Seasid profile image
Seasid in reply to Daddyishealing

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.

Daddyishealing profile image
Daddyishealing in reply to Seasid

Were you on other adt meds prior and switching helped you ?

Seasid profile image
Seasid in reply to Daddyishealing

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?

Daddyishealing profile image
Daddyishealing in reply to Seasid

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.

Daddyishealing profile image
Daddyishealing in reply to Yingsang

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

Yingsang profile image
Yingsang in reply to Daddyishealing

Really I do not have a referral. Back to the starting point, is the MRI, and what is the main cause of the pain.

ellie2211 profile image
ellie2211

❤️ I do not have advice. But sending big hugs.

Lulu700 profile image
Lulu700 in reply to ellie2211

❤️

Daddyishealing profile image
Daddyishealing in reply to ellie2211

How sweet. Right back at you. I definitely needed that 🤗🤗🤗

Nous profile image
Nous

dear Erica ... so sorry for what's happening ... consider checking-out envita.com ... i've said a little prayer for you and your dad 😃

Seasid profile image
Seasid

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.)

You may also like...