Update on Pluvicto and Xtandi

[bglendi53]

If you have followed any of my previous posting, here is an update how things are going

1) PSA before starting Pluvicto and Xtandi on Feb 13th was 305

2) PSA before second round on March 27th was 240

3) PSA before starting third round on May 12th was 160

4) PSA before starting fourth round on June 23rd was 157 ( I was hoping it would be under 100 )

Next round is scheduled for August 10th, hopefully I'll get a better PSA drop.

My hemoglobin is hovering right around 10, which seems to be making me weak.

Told my Hematologist during my visit on June 23rd, that I am quite nauseated but not vomiting, food just doesn't appeal to me and I just plain feel like crap. She got a good first hand, up close look at it. I also admitted to her that I actually passed out on May 22nd right in the middle of having to euthanize my dog. My wife thought I was having a stroke. I was out for at least 10 minutes. The EMTs were called to the vet office, most of it was dehydration combined with intense trauma. I loved that dog and with all the weakness of the treatments and the worrying more about her than myself, led to my collapse. It was a rough couple of months, she had kidney failure.

So now, after a few new nausea meds, I'm feeling pretty good, except for my legs, they feel like jello. the upper half of my body feels completely disconnected from the lower half. Very low energy and barely able to walk up my 120ft driveway. So I have no idea why this is happening other than being anemic with the low hemoglobin.

Anybody else feel the same way? Has anything helped?

I'm sure I'll get some great feedback, thanks ahead of time.

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Xtandi side effects

[Tall_Allen]

So sorry to hear about your dog- losing that kind of love is a huge loss. You might want to discuss getting an infusion of whole blood.

[bglendi53 in reply to Tall_Allen]

They don't want to give it to me until I drop to around 7.

[Kaliber]

Xtandi side effects, they can be even worse believe it or not. I use a electric trike for transportation… I can’t walk 15-20 feet . No biggie for me , eye on the prize ( life ) . Xtandi kicking my cancer cells’ a$$es for 55 months and STILL going strong ( just got my latest <0.1 psa test back a couple hours ago. ) hang in there brother you get used to it and find ways to work around it.

❤️❤️❤️

[Yank66]

Xtandi kicked my husband’s butt! He took it for a year until it wasn’t doing any good, but every day was a low energy day. Side effects were more debilitating than chemo. Now he’s on Pluvicto with fatigue being his chief complaint. I can’t imagine him doing both meds together

[bglendi53]

I should have mentioned that my MO took me off Xtandi for a week, and then I started back up on just 80mgs instead of 160.

[RCOG2000]

i had a good response with 40 mg. A year now. Added lupron in dec and still undetectable. Have those same side effects but milder Cardiac issues starting to show up now. Not sure if related to xtandi and lupron or heart disease. MO and Cardiologist sorting it out now

[Lokicliff]

So very sorry for the loss of your beloved dog. All dogs go to heaven, so I always hope to meet my furry friends again in the after life. What would heaven be without dogs?! A few thoughts on your symptoms - have they checked your electrolytes, particularly your sodium? A common problem, especially in the summer, with symptoms of weakness, fainting, and even can have some confusion. Also the dehydration can make a person feel pretty awful. Combined with a low hemoglobin certainly doesn’t help you. Do you keep a full thermos of water with you at all times and try to get 8-10 cups of fluids per day? Perhaps try to do some leg exercises you can do while sitting down. Hope you are feeling better soon!

Loki

[bglendi53 in reply to Lokicliff]

Yea that dog was a tough loss, she was by my side for 11 years. I know I should do better on hydration, but I'm also diabetic taking Jardiance, which gets rid of sugar via urination. I'd be peeing all day long doing 8-10 glasses of water, lol.

[Daddyishealing in reply to bglendi53]

Lol yeah we don't need you in the bathroom all day ..you got two pups that need you ..retrievers? I never got over my dog and I truly feel I need one but it's just so hard to find the right rescue and my dad is in the process of dying a is my last indoor doggie meaning he's a chi and raised with a pack who is gone he's blind and I can't take places bc it hurts him so I'm trying to think of a bree that lives long and collllmsybe 49 pounds I love labs and lab retrievers but in used to digs under 26 pounds sm. I hope you'll be my friend as I search for new babies to bring me life . Oh what e learn from our furry friends . Please be grateful and smile fir me today bc my dad is in process of leaving this world and I'd love to know that knowing you spent the day with family and living eoj it would just bring us both joy. That's my wish instead of prayers xoxoxo

[bglendi53 in reply to Daddyishealing]

The dogs I got are Maltipoos, same as my deceased dog. They are great companions and are mostly inside lap dogs. Always trying to please their master.

Best of luck with your dad. I went that with my mom over three years ago. I never told I had cancer while she dying of stomach cancer.

[Daddyishealing in reply to bglendi53]

You don't deserve this . I lost my mom to lung cancer three years ago then my grandparents. My dad didn't go get biopsy bc his mom was sick by time done he could t stand to take care of her and I got to . I know it's wrong to be hurt but he doesn't want me he wants his brother and my sister in care and calls for them and I'm overcome with tears . You keep rocking Mr bc I want to hear some sunshine from you and if there's only rain I'll also be here to listen . Greatest respect , Erica

[bglendi53 in reply to Daddyishealing]

Thanks. I didn't even mention my wife's 93 year old mom had a severe stroke a year ago and has been in a nursing home ever since. And her 91 year old dad is being fed by different family members, but they've all been good helping out.

So my wife and I are not enjoying life much right now

[Daddyishealing in reply to bglendi53]

Aww what a cute breed. I must be losing my mind bc I thought you had a lab or mixed you up with someone else whose pic had a lab. I'm looking for a rescue hoping to get approved bc I need a pet to help me through the loss that's in process . How is your body handling the puppy training ? I think I'm going to start a thread for people to post an animal that helps them through maybe bring some light to the hard days . But I dint want to waste anyone's time I just thought it might be nice as all unite over this disease but there are other wonderful critters to unite through as well. Fingers crossed I find a rescue if not I'm going to be calling your breeder to buy a lil soulmate too. I love that combo but never had one . Pm me pics and a reliable breeder if you know of one and are in the us.esr if luck to you and your fur kids and ofcourse human family lol darn . Fitbit about the humans lol

[bglendi53 in reply to Daddyishealing]

The Maltipoo breed is becoming pretty popular, they are really loveable dogs. But the training is tough because they are so full of energy, I wish I could tap into some of it. We got lucky, these dogs can sell for over 2K each, but we found someone who had 5 puppies, and was asking half that. She wanted to try it with her male and female Maltipoos, but doesn't plan on doing it again. I'll PM you some picks.

[tuta1960]

My father îs on xtandy for over 6 months. At first, he was very tired, very. But little by little he started doina different Jobs and some sport and now he feels ok.I ve read once that u should take Xtandy în the evening, for better results.

My father says that activities, small activities, make him felul better.

And he drunk some aronia juice, maybe u can try this too.

Wish u all the Best!

[j-o-h-n]

Lately I'm feeling tired....... could it be my age 86 years old? Started Nubeq/*/a /* = u/ over a month ago (replaced casodex)....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/07/2023 6:37 PM DST

[Daddyishealing]

Id be pretty proud of that amount of walking ability bc I lost that at39 due to other issues so don't be so hard on yourself. 10 hemoglobin pluvicto can proceed. Sadly my dad's was at 6 and now he's in hospice but he has cll as well so 10 to us would have been a god send. I just lost my service dog and a day bf my dad was hospitalized my 171/2 year old kitty who had kidney failure and who I took special care of for years . I'm so so sorry. This is a loss you need to grieve in the sunlight if you can or with family. I personally now see what trauma does to a person bc my dad gid sick all my hair started falling out and turned grey I'm shaking all the time my thermoregulation is off so don't consider this all pluvicto but some trauma . The Inability to eat with meds will come back . Your hemoglobin is at a safe level but yes will make you feel awful. Can you discuss with your doctor a blood transfusion which is very common with this med and will help you along . Have someone advocate for you bc some places see ten as fine and you may need to really say Dr I know I want and need this and I'm begging you to put in the order bc I know my body . You got this champ 🏆

[bglendi53 in reply to Daddyishealing]

Yea, I am still suffering from grief over that dog, but I have gone out and got not just one but two new puppies of the same breed, cuz they are so loveable. Other simple things likefixing things around the house, going to long walks along the creek, and worst of all not being able to ride my motorcycle just make be feel like I'm losing everything I love to do. I was pretty active until about a year ago then I didn't feel I had the balance or strength to ride such a big bike. Now I can't even get a offer on it. But I'm not giving it away cuz maybe things will get better and I can ride again.