Hi to all-

[dadeb]

Dad and I (Deb) have been following the site but first time for posting. Thank you all for sharing.

I’ve been taking care of Dad since his diagnosis in 2011. We held steady with Lupron for the first two years or so, but since then, it’s been an aggressive battle. I don’t want to go back and second guess, but I do wonder if we had been agressive right from the start, if we’d have a different outcome.

Provence, Doxetel, Xtandi, many others in between, ending with Radium 223.

The side effects of all of these drugs, including prednisone, caused huge weight gains, until Radium 223. Now we’re struggling to keep weight on, with no appetite, even with thc.

The oppressive depression has been a long time battle and now it’s indescribable.

I find all of you men, and caregivers/spouses to be a great strength to us. Thank you for sharing your journeys and struggles with us.

When I look back, it feels like our oncologist just went down a check list in order of treatments to use until they stopped working, only to move down the list until the final option of Radium, which has left him with no feeling from the waist down and weakness and fatigue.

I have a friend who Lost her husband after only a year, but he was diagnosed late. I can’t help but wonder if not knowing would end with the same outcome, but without the fear and side effects of a losing battle with prolonging life only a few months. I’ll never know the answer to that question, but I do know “Jerry” was a lover of life and lived it fully when he didn’t know he was living with stage 4 prostate cancer, while my dad wasn’t able to enjoy life fully because of the debilitating effects of knowing, and battling the side effects of the drugs.

What say all of you? And what help and advice can you offer for this stage that we now find ourselves in.

We’re getting 1-2 blood transfusions per week to help combat the severe anemia. For this reason, we don’t qualify for help at home. For now, I’m ok taking care of his needs myself, but that time is rapidly fading. Soon, I’ll need help with bathing and be other things. His oncologist hasn’t checked in on him at all these last few months. I think she’s written him off, and has asked me to encourage him to discontinue transfusions. It’s not my call to make as a daughter. I can’t encourage something that will take him from this life, esp when he’s not suffering with pain. It’s more than what a daughter should be asked to do.

Happy Sunday to all of you and hope to hear something hopeful back. 🌸

[Tjc1]

Sorry to hear about your dads and YOUR battle. I dont know what else there is but maybe enter some trials. I got diagnosed in 2011 too. Guess i jave been lucky. I just went metisatic in january. Also had to stop work. The depression is terrible and the side effects.

Because of all that i plan to bow out take the path of Hospice. Sounds cruel but enough is enough. Only your dad can decide what he wants to do. I hope peace for both of you. Dont forget to take care of yourself throuh all of this.

Thomae

[dadeb in reply to Tjc1]

Thank you for your reply Thomae. You’re exactly right that it’s beem “our” battle. Never thought we’d be in this nightmare. It’s a brave thing you’re doing. Hospice has a bad rap. Dad is terrified of the idea, but they offer so much more than what we think of as hospice care. I’m discouraged that there haven’t been more strides made on treatments or prevention for this dreadful disease. We looked into trials, but none seemed to work out. The “Match” trial that the doctors seemed hopeful for didn’t work out either

I think there’s a huge gap in active treatments, the “beyond”...... we’re out in limbo it seems. Please stay in touch.

Deb and Dad

[Tjc1 in reply to dadeb]

I hope they can come up with something soon for all of us. I will stay in touch.

Thomas

[YostConner]

You need a new oncologist.

Don’t second guess what you’ve done. Treatment has changed a lot since 2011. A lot of what’s currently aggressive wasn’t available even a few years ago.

I finished radium 223 last month. My appetite is returning. I hope your dad’s will too. That will also help his blood numbers. Does he take a protein supplement?

Finally, thank you. None of us can do this without loving caregivers.

[dadeb]

Thank you! I agree. Where is the compassion, or follow through? You spend years meeting with these ppl, only to be tossed aside when things look bad. I’ll try not to look back and second guess

Dad is taking “Pure Protein” tabs, but not sure if they’re helping. We’re trying 2% iodine drops in water to help his blood. That, along with mineral drops and essiac Dronabinol for hunger.

Not gonna lie- I’d rather be just the daughter, but I’ll never leave him alone in this - everyday is one more day I have him even if we get sick of each other

I’ll follow your blog for updates Thanks again for your reply

[Dan59]

Deb, I agree that when one Oncologist seems to give up , you need a new one.Where are you located? Sometimes after chemo xtandi is shown to work again, that is my plan. Hopefully with the stopping of radium 223 the blood numbers will return and he can go from There. It is so wonderful that you are caring for him. We are all here for you,let us know how things are going. Please do not forget to take care of yourself too.

Dan

[dadeb in reply to Dan59]

Thank you, Dan. We’re in the Boise, Idaho area. We changed oncologists and location, but stayed in the same network which was a mistake. I didn’t get a neutral opinion, I think, because the two doctors had communicated before our visit. So, this new Oncologist passed us over to the PA. So- the question now is whether to start over out of network, or deal with the PA (who genuinely cares). There’s no pain, but fatigue- and of course discouragement. But is that enough reason for throwing in th towel?

Question for all of you:

Why has there not been more testing of Bone Marrow Transplants with regards to Prostate cancer? I’ve searched this subject and found only one case. Seems like a likely solution ? Since this cancer spreads to the bone marrow? We found a great Doctor at the Huntsman Clinic in Utah, but not many options for trials right now.

Thanks for your reply, Dan.

[Dan59 in reply to dadeb]

For Me at my stage and I am on the verge of using up all available treatments. I find it better to have a compassionate local Oncologist, who will do research and is open to my research findings on options of what to do when all else fails, I have this local MO , and she has been my MO for 3 or 4 years now, knows my case off the top of her head, is very compassionate, we will try things out of the box. She is just 7 minutes from my house.I find female MO to be more compassionate, and uderstanding of my desire to try things from the past. I wish you the best.

Dan

[dadeb in reply to Dan59]

Thank you again, Dan. Some info: tho I’m sure you’re way ahead on your research of this drug, but the Doctor at Huntsman suggested Lynparza as a next step. Not possible for us because of his anemia at this time, but hopeful still to give it a try. I wish you the best also, and look forward to your updates.

[Dan59 in reply to dadeb]

Has he had Genetic testing , and found Bracca mutation? Is this the reason for lynparza/Olaparib suggestion when his blood numbers recover?

[dadeb in reply to Dan59]

Hi Dan. Good question. I’m not sure on this. I think I’ll check with Huntsman. I know his local Oncologist didn’t test.

[vandy69 in reply to dadeb]

Good Monday Morning dadeb,

The results from 1 of my Guardant360 liquid biopsies revealed an ATM defect which permitted Dr. Snuffy Myers to prescribe Lynparza.

It worked for me for about 9 months with few side effects. Make sure your insurance will cover it, because it is about $10,000 retail/month. I am on Medicare with a Supplemental Plan so I was OK.

Best wishes. Never Give In.

Mark, Atlanta

[dadeb in reply to vandy69]

Thank you! I think I need to follow up on this. Best wishes to you also.

[Tall_Allen in reply to dadeb]

Bone marrow transplants are only used for diseases of the bone marrow, like leukemia and sickle cell anemia. They are useless and life-threatening for cancers that have METASTASIZED to the bone marrow. By the time the prostate cancer has metastasized there, it is systemic - in the bone itself, in the blood, the lymph, and probably in visceral organs (bone marrow is one of the last sites of metastases, not the first). There are millions of cancer cells and they are everywhere, most are not visible with imaging.

As for clinical trials, there is one (in Houston and UCLA) for Lu-177-PSMA but it is expensive - around $9000 - NOT covered by insurance. Results of small scale trials so far look good. Two more trials have been announced but are not yet recruiting. However, I don't know if any trial will take him with bone marrow suppression - it may be too dangerous. See the following and links listed at the end:

pcnrv.blogspot.com/2017/09/...

[dadeb in reply to Tall_Allen]

Thanks for the info. And thanks for the link. I’ll check it out.

[podsart in reply to Tall_Allen]

Not sure if Dad is able to travel; thought could get PSMA treatment cheaper in Germany.

PSMA targeted therapy seems like a major breakthrough ; fundamentally a new direction. Not just a tweak of the well worn ADT process. Don’t understand why are we seemingly so far behind the other countries In getting this promising treatment modality up and running.

[dadeb in reply to podsart]

I agree. Lots of trials, but nothing local!

[Hidden]

dadeb - Thanks for being there, I can only hope someone will stay by my side. It's my greatest fear. You are one in a million. Take care of yourself.

[dadeb in reply to Hidden]

This is indescribable to watch someone battle this monster. The stress of it all has sent me into some crazy side effects of my own. I’ve learned a lot on this journey and I hope to equip others with some tools I didn’t have or know about until looking back. I hope you’re not alone in this fight. Thanks for your reply.

[Tall_Allen]

From my experience with my parents, I learned to stay focussed on the present moment. Ruminating on regrets and missteps from the past (and from what you wrote, he seems to have gotten great care from you and his doctor) will only make you depressed. Ruminating on what may or may not lie ahead will only make you, both of you, depressed and anxious. Anticipating imagined futures buys you nothing. You lose nothing by adopting a stance of just taking it as it comes. I found that learning to practice Mindfulness helped me stay in the present.

[dadeb in reply to Tall_Allen]

Thank you. Good advice. Very good advice.

[Damusolf]

Hey Deb,

My dad seems to be in the same boat. Prostate Cancer since 2006 and we have done all the conventional treatments. He just finished Radium 223-it has left him basically unable to walk and with bowel incontinence.

My dad wants to keep fighting so I respect that just as I would if he were ready to stop treatments.

Right now, we are waiting on Guardant testing to come back. His MO told me they had done genetic testing and he had no mutations. When I asked to see the results, the MO "discovered" they had never done it. Hopefully my dad will have a mutation that can be possibly treated with a PARP inhibitor.

We also consulted via Facetime with Dr. Lam at Prostate Oncology in CA. I believe Keytruda or Lutetium will be his suggestions if we find no mutations.

Would your dad be open to an antidepressant? My dad has taken Lexapro, very reluctantly, for the last couple of months and it's been helpful.

Hang in there!

[dadeb in reply to Damusolf]

It’s so great to hear from someone in my shoes!! So so great. Thanks for your reply. He was not open to an anti depressant. I was hoping the MO would help me out and talk him into it. She did finally prescribe anti-anxiety, but He refused to try it. I’ll see if I can get him to try the Lexapro.

I was researching Ketruda today just from seeing it on this site. Maybe there’s some hope for us still.

We went into the Radium 223 not realizing the extent of the downside. I’m so relieved for him to not have pain, but it seems like a huge price to pay. What do you think?

You hang in there too!.

[Damusolf in reply to dadeb]

I guess the Radium 223 was worth a try but I think it really made my dad’s condition decline quickly.

It’s so tough to navigate this process. There’s so much information out there and you’re racing a clock.

Please feel free to message me if you ever want to just vent.

[dadeb in reply to Damusolf]

You read my mind 💗

[ctarleton]

If/when you may decide to start investigating local hospice options, and more in-home caregiver assistance, these links/sublinks might be of some preliminary reference help:

stlukesonline.org/health-se...

yellowpages.com/boise-id/ho...

I've also found these documentary films to be helpful as my own small family has mentally prepared for my own eventual mortality, as I continue to live with Stage IV prostate cancer.

pbs.org/wgbh/frontline/film...

passing-on.org/

Peace and Big Hugs to you and your Father.

Charles

[dadeb]

Thank you. I’m very grateful and send love and prayers to you and your family.

Debbie

[Olivia007]

Hello as a daughter I know what you mean. Everything you said I can relate to as a daughter and a caretaker. We just lossed my mom 2 months ago and now with his cancer and her loss he feels like he has nothing to live for they were married for 56 years. But going back to your words I identify with all you have said it’s made me cry that someone can relate to us. Bless you for taking care of your dad and may you have the strength to carry on.

Olivia

[dadeb in reply to Olivia007]

Thank you Olivia. I’m sorry about your Mom. Bless you for taking care of your Dad now. 56 years is amazing.

[Olivia007 in reply to dadeb]

Thank u

[Schwah]

The kindness and caring I watch every day on this site is quite moving. Do try and schedule an appointment with one of the doctors at prostate oncology as mentioned above. I go there and they are very on top of all the latest and very caring. Dr Lam is great there and I see Dr Scholz. Either would be awesome. You seem like an incredible daughter. Your dad is very lucky to have you. Please take care of yourself too tho.

Schwah

[dadeb in reply to Schwah]

Thank you Schwah. I appreciate your kind words and advice. I’ll keep you posted.

[larry_dammit]

😢😢 Deb sorry to hear about Dad. It’s never to late to go to another doctor to get a second opinion. Sounds like he has had a long hard battle so far. I’m only just under 2 years into mine. My doctor did go in aggressively from the start ,it was tough but so far quality of life is good. I wish you both some peace and better luck in your battle soon. 😢🙏🙏🙏🙏

[dadeb in reply to larry_dammit]

Hi Larry. Thanks for your reply. There are so many new treatments coming your way, I know there will be a cure for this dreadful disease. Time is not on our side, but a new doctor is now the plan. Hope is so important to both of us. It’s discouraging to feel like we’re being tossed aside.

[Raymonda100]

I recommend that you and your Dad read Ira Byock''s books: The Four Things that Matter Most and Dying Well.

[dadeb in reply to Raymonda100]

Thank you - I’ll do it.

[Raymonda100 in reply to dadeb]

Also - Atul Gawande's Being Mortal.

[caretkr]

Sorry to hear about your dad. I too just want to be with my dad.. be it even a day. He is fighting metastatic prostate cancer. I know you would have tried everything possible still suggest to get a second opinion. Wish you and your dad strength to be together through all this.

[dadeb in reply to caretkr]

We’re in the same boat, it seems. I wish you strength also.

[j-o-h-n]

Bless you Deb... As my wife keeps telling me "the past is the past and thinking about it will not change it". She's so smart and sweet. Live for today but yet be concerned about the future. How old is JERRY? Maybe a new oncologist will think outside the box and provide a new and different approach in treating you Dad. Hopefully for the good!

Good Luck and Good Health.

j-o-h-n Monday 05/07/2018 1:56 PM EDT

[dadeb in reply to j-o-h-n]

Thank you, John. Jerry was 76. He was the life of the party, but he lived only 9 months after his diagnoses.

[j-o-h-n in reply to dadeb]

I'm sorry but I misread your post. Well I bet Jerry is really having the "life" of the party now. My only issue is when I go to that big comedy club in the sky I will have to learn how to play the harp (and I don't read music), oh woe is me.....

My question was meant for you Dad's age. again....

Good Luck and Good Health.

j-o-h-n Monday 05/07/2018 6:55 PM EDT

[dadeb in reply to j-o-h-n]

Oh wooops. I should have figured that out. Never too late to learn the harp :).

My dad is now 78. He lives at a. Skypark here in Idaho. Up until 4 years ago, he flew his Cessna 150 all over. Lots of hunting and fishing, etc.. I didn’t realize a lot of the problems we were having was from the side effects. I wish I had found this site years ago. It’s been very enlightening to read your stories and suggestions. We have a blood transfusion on Wednesday. I have a list of questions, but if you have any suggestions for me to ask, I could definitely use the help.

[j-o-h-n]

My hobby is humor... but my only suggestion is for all of you to pray as I will for your Dad.

Good Luck and Good Health.

j-o-h-n Tuesday 05/08/2018 8:59 AM EDT

[dadeb in reply to j-o-h-n]

Thank you 🌷