I have fought stage 4 metastatic hormone resistant prostate cancer for 6 years so as to make sure I don't get where I am at now. sitting in a chair looking out the window unable to do anything, wondering if my end date is close.
Two weeks ago, my abdomen became distended and very painful. The diagnosis was ascites with malignant peritoneal carcinomatosis. The abdomen fills with fluid and blood. After 2 paracentesis procedures, 10 liters of bloody fluid was removed. A tube was inserted so I can drain fluid at home. I am anemic, weak and after a few steps, I lose my breath and get dizzy. BP 98/62. And to add to the misery, a small blood clot was found in the pulmonary artery, So even though I am bleeding internally, I was put on Enoxaparin. I had a blood transfusion in the hospital, Hemoglobin is around 7,5
I have just had my second round of Keytruda and still on Lupron. My Oncologist and the Kwon Team recommend a biopsy of the abdominal tumors. Hopefully a treatment plan will be made.
Possible treatments: surgery, radiation, HIPEC chemotherapy and/or Lynparza. I will be at Mayo on October 18th for PSMA PET scan, labs and meet with Dr. Kwon. My history is on my bio.
Looking for any insights.
Thanks,
Steve
UPDATE UPDATE
Update to the above post.
PSMA PET scan came back with a score of 2. Meaning I am eligible for Pluvictio. Was due for my fourth infusion of keytruda yesterday, but stopped due to a 4 week wash out required to start Pluvictio.
Mayo was not able to start until January. However, My local Oncologist in Grand Rapids, MI said they have it and can start as soon as possible.
Hopefully, this treatment will stop the acities and I can function as a normal human being.
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SF22
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Not a good place to be... sorry to hear how bad your cancer has become.. I'm 5 1/5 years into stage 4 and out of treatment options with my MO and RO. I'm trying a BAT series to see if I can slow mine down.... All other treatments have been stopped. Wishing you a comfortable future. Life Is Good, just not easy some times.
Are you seeing Dr. Evan Yu at SCCA this week? He had a great webinar discussion a week ago with Dr. Mark Moyad at the PCRI annual conference about Lu-177 available in Seattle.
Steve, I hear your dismay and consternation. What a difficult and challenging time for you and your family.
From what I've read you have a good team, and fingers crossed that they pull something brilliant out of their bag of tricks. My thoughts and prayers are with you.
Hopefully your next treatment will turn things around. I've fighting metastatic prostate cancer for 6 years after blood transfusions and 3 days in the hospital. I'm thinking that your next treatment will work for you. You are a fighter, and you just need a little kick right now. Also seems that you are getting the best people working for you. I'll send a prayer and maybe tomorrow will be much better. Hang in there.
Gosh I hope there’s a nice view out that window and hugs inside. I look forward to hearing about a creative fix. I wish I had the right words to give you comfort and encouragement. Write /chat anytime.
i am so sorry to hear about what you are going through. Keep fighting! i know of someone who was on an artificial resuscitator for some time and whose family decided as per doc’s orders to pull the plug. He survived the first 20 minutes, then one hour , then 12 hrs. He is still alive up to now and this was about 7 years ago! He has metastatic multiple myeloma. What I really want to say is that, sometimes men give up but GOD IS ALWAYS IN CONTROL! HE is the only one who knows when it is time for us. Keep praying … i will pray for you.
First let me say you have done nothing wrong with your health decisions. Many men face the same situation even doing the therapy, their physicians recommend.
Don't Give up
Here are some thoughts in a nutshell:
Perhaps changing how to heal PC might be something you might want to try.
1. Change physicians
2. Change how you eat
3. and think
4. take supplements
The physicians I suggest are called functional medicine drs . They are not allowed to take insurance because they do not use drugs. They supply the body with nutrients that starve the cancer, with IV.s or other means. they do not use drugs.
Eat anti-fungal foods because cancer, has a fungal component and thrives on carbs, yeast and sugar. Eat from the phase one diet which can be found online.
Look up the Initial Phase one Diet online and print it. (By Doug Kauffman0
A sample Day of the Phase One eating plan:
Breakfast: Omelet with onions. Bacon or a breakfast steak
Carrot Juice
Lunch: Salad with cukes, black olives tomatoes onions and Tuna
Dinner: Steak or salmon with steamed broccoli
think positive.............where the mind goes the body follows.
I have lived through cancer and defeated it many years ago.
My husband with stage 4 PC and I have eaten this way for years.
Starve the cancer and it dies
I BELIEVE YOU WILL HEAL....BUT YOU HAVE TO BE WILLING TO CHANGE WHAT YOU DO.
It’s such an underestimation to say that you are in a tough spot. Ascites can be such a bugger for anyone and the conundrum of blood in the belly alongside being on anticoagulants for the clot. I hope that your team can help with some sort of treatment that can help with discomfort. I don’t know what I would do in your situation. My thoughts are with you and your family
Dr. Kwon is THE MAN as bglend53 stated... I'm also Stage 4 CR and all that Jazz.. I thought I was doing well after my first visit to Dr. Kwon,, but since then I had a PSMA scan and it's showing new activity.. I'm going on 13 years since m Robotic removal and salvage radiation... ADT all of the oral stuff not Dr, Kwon recommends Chemo and hopefully LU177 I'm going to keep fighting and so should you... All we have is hope Faith and time.. Be Blessed and Keep the faith.. Tell Dr. Kwon Hi from ME.. The Crazy guy from Tampa ... lol😜
Peritoneal metastasis of PCa is very rare. There are many things though that set it aside from the normal frey! Problem is the lack of patients with this diagnosis gives little prognostication for the Oncologist to share. Same goes for what might work best...
I have metastasis to my peritoneum and appendix, both as rare... So I'm walking this road currently as well. Along with failed RP, RT&ADT, Chemo and now ADT, possible CRPC, to be determined with rising PSA in a low T environment. All in 4 short years...
One of the issues I've come across in my readings, is the problem with blood flow to the peritoneum when considering therapies. Also, there are other cancers that have this characteristics, ie, ovarian, colon, mesothelioma, to name a few, which soread there (peritoneum). So behavior wise, is worth examining. That said...
I've looked at HIPEC a few times, I'll say that it isnt widely popular or used for PCa. But it offers compelling evidence if there are lesions in the peritoneum. I would seriously examine this and discuss with my oncologist should I have mets discovered again there. Spot Radiation too, if just a few lesions detected as well. This of course in addition to some sort of systemic therapies if still available. Having the tissue biopsied and also genetic testing done helps as well. Doesnt matter if done before, the tissue NOW is important...
All in all, the lack of patient tracking for this creates the problem that although the PCa presentation is very different, the treatment offered is for a different (normal) patient stratification. This is where SOC fails some... And where an individual gameplan becomes so important!!! The difficulty is finding an oncologist that will treat you like that rare gem and look outside the convenient boxes they place PCa patients within. Hence, the HIPEC...
No worries, glad I could iffer some insight. Thank you too, as your post has reminded me to re-examine this. I will post more as I comb through my archives if I find more...
I notice that a number of folks advise you to keep fighting and to not give up. When I hear this type of advice thrown at folks who are quite ill, it strikes me that such advice is presumptive at best, and cruel at worst. It assumes that if one doesn’t “keep fighting,” this is somehow indicative of character weakness--or maybe even some moral failure. Laying the additional burden of “fighting” on those who are already weak and sick is often a load too hard to bear.
Only you can decide what is best for yourself—and how to proceed. We all "muddle through"! There really are no right or wrong decisions if you follow your inner voice and are guided by love—for both yourself and those you care about.
In a few short years, I will probably be in the same situation—and face the same dilemmas—in which you now find yourself. We instinctively struggle to stay alive. Yet, finding a good transition out of life is something quite different from "giving up." So whether I die of prostate cancer or something else, I hope that I will always remember that death is as much a part of life as is birth. And that I will, at the last, find peace—and maybe even some beauty--not in fighting but in acceptance.
I think Lu177 is well worth looking into. I’m starting it end of the month. Very excited that it could reduce size of my C3 and T8 to T12 bone Mets and zap a bunch of smaller ones if present as well. I would say wish me luck, but I feel the luck is being able to get the Lu177 treatment.
Don't know much about peritoneal carcinomatosis. Actually it's the first time I heard of it. If it were me, I would try using heat therapy, like heat pads, hot tubs, sauna, etc. Heat over 106 degrees F kills all cancer cells. Just don't overdo it.
After reading some of the reply posts, others have said it better, but I hope and pray for your healing. Also to each his own opinion but I say not to be presumptive or cruel(such a view!) but yes, keep fighting , not as a downbeat empty phrase as some think, but keep your mind active in your treatment. And as Jimmy Valvano said it best, " Keep fighting never never ever give up!"
Also I sort of disagree with the "time between bookends" summation, and avoiding the one. Like in Shawshank Redemption. "We need to either get busy living or get busy dying" Not avoid the later but I prefer living for now.
Also keep whatever faith is yours and stray strong in it..., mind spirit and soul.
We are all in this together Brother
Wings aka Dan in So Cal. Advanced Stage 4 , in remission 8 years.
We really enjoyed Dr Kwon when we consulted him years ago. Mayo may be a great place for you to receive care as they see so many cases from around the world. Hoping it’s good for you.
Steve this is just brutal to read. These are the scenarios that Im told are coming but you are living it. My heart goes out to you brother. All I can say is I saw Euge for 4 years and he is a magician. You are in good hands. Tell Euge Johnny says hi, as I had to switch to Mayo Phoenex. Prayers out to you today
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