This is going to be too long! It my first attempt at connecting with this group. I have learned so much by reading your posts and replies. I know quality of life Igor the longest time is my dad’s goal. He was diagnosed May 2018 with stage four prostate cancer. He had been taking testosterone a few years before and has a great deal of strength mentally to ignore pain.
My dad, 83, has had radiation to areas in his pelvis, prostate, and top of femurs. He started on Lupron right away and was doing the prednisone and zytega for about 8 months. He cannot self cath and ended up in the hospital in February with sepsis from extreme infection that started with a UTI. He also was diagnosed with diabetes for the first time while in the hospital. The thought was that the long term prednisone could be elevating his blood sugar. He started on Glipazide and insulin when needed - checking sugar 3x per day... and changed to xtandi.
He went back to work a little and was gaining strength. His blood sugar has lowered greatly.
He decided to radiate the prostate just to see if he could get more flow and empty his bladder. It backfired and he had another catheter. Ended up in the Hospital with IV antibiotics and a unit of blood. They have him off the xtandi for a couple of weeks. He is going weekly for labs and getting shots to help with his Reb blood count issues. He’s on cymbalta (sp?) but pretty down about being so weak.
His labs every month look good for almost undetectable PSA. His last bone scan looked like the growth is holding still. His CT scan showed a small mass? By his stomach and pancreas? Not in a place that could be biopsy easily. They are watching with CTscans. But he was having extreme pain that meds were not covering. He went on morphine 15mg every 12 hours. It makes him very sleepy. Wondering if he could lower that and check to see if that pain is still there?
His muscle mass is going so quickly. He needs a walker and can’t feel his feet he says. We are walking behind him 24/7 because he feel twice.
He takes the bone builder shot and a Lupron every month.
He takes lyrica for pain- shingle residual neuropathy that he’s had for 22 years.
I’m sorry to ramble... just know the knowledge pool in this group is immense!
Foley tips or ideas about hiring a nurse to come cath at home? Could that help open up the path around the tumor?
Depression... suggestions? (unfortunately my mom is getting a PETscan today and has just been diagnosed with lung cancer. So fuckcsncer again!) any distant or video counseling recommendations Anemia- suggestions that could help?
Much gratitude for any help.
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Abigayle
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I can feel your anxiety.... Lots of issues.... Can you tell us where your Dad is located and his Treatment Center(s) and Doctor's name(s)?
As far as your Mom is concerned I am being treated for a lung melanoma with Keytruda (it's working). It's supposed to be a great drug for treating Lung Cancer. Remember to ask the Doctor about Keytruda....
It's hard for me to believe that a competent radiation oncologist would have treated his prostate, knowing his history of obstruction and that he has multiple metastases. I guess his low RBC precludes docetaxel or Xofigo? Great that the therapies he's on seem to be holding so far. He should have bone alkaline phosphatase measured in addition to his PSA. If he is taking Zometa, consider adding Celebrex.
I agree with Tall_Allen that his pain medication should be based on an anti-inflammatory like Celebrex, and then only add pain killers as needed. You have a lot of problems all at once! Part of his problem is too many medications and you need to see what can be reduced - any reductions will help. Gliclazide can be quite mind-bending as well as Cymbalta, so see what happens on a half dose (cut tablets in half), changing one medication at a time (or you do not know what is working!). Galvus/Jalra is a much more gentle blood sugar medication instead of the Gliclazide - that change may help a lot (mentally as well).
If you can get a weekly 25 grams of Sodium Ascorbate via IV, he should be able to cut the Xtandi doses by about 75% - i.e. 2 capsules of Xtandi for the 3 days before the IV. Thus 4 days a week with no Xtandi at all, and that will help his side effects a lot. That should get him back on his feet with the PSA also kept low, and that will also help all his other problems . If that works OK, the Xtandi could be cut to 1 capsule and see if that is still OK. The Ascorbate may also help with the UTI problem, but make sure he drinks a lot of water too. Make sure he is eating a good balanced diet, zero sugar and wheat, with only raw fruit and adding about 3000 iu Vitamin D3 per day for now. Same for your Mom - she could also try the Sodium Ascorbate to slow things down. Good luck!
My first answer is a question: who is taking care of you? And how? You are responsible for too many lives here and may need help with that.
2. Yuma IS a small town. My mother was married there in about 1954. That said, they must have a Visiting Nurses Association and home health aides to provide you some respite care.
3. "Can't self-cath"? Why? Short of missing two hands, stubborness, mental incompetence, aversion or perversion, I cannot imagine _any_ reason he cannot self-cath. Training to self cath would do A LOT to promote his health and avoid sepsis. Can you revisit that with him?
Others can talk about therapies. Have you your mother and your father talked about end of life planning? Or, when is enough enough?
Thank you for your kindness. I just got completely cleared after my breast cancer/mastectomy/ recon/ and partial hysterectomy... I’ve got an army of love and so do my parents. My siblings and I will be working on getting some help. Only two of us live here.
My dad could revisit self catheters. He has incredible pain and could not get it passed the tumor? Right now he’s exhausted and the Foley does allow his to sleep. It hadn’t been back in a month yet. When we go back I’ll ask about the lessons for self cathing ?
Hard stuff...
my friend told me that it is his ( and now my mom’s) portrait to paint. I’m just a supplier of materials.
She also said that sometimes we are lucky enough to to be the right person for the job. The right person to be strong enough for them to be weak and intuitive to know what they need before they ask
This morning I was praying/ meditating with a guided video... finding and rooting myself in faith and peace ... and the cat threw up in front of me! Ha ha It’s never dull around here.
Hilarious, you cat's view of the situation. Bless him or her for bringing you some humor in your travail. The Foley should be dilating the urethra; and when it comes out self-cath would be easier. It is never pain free of course as the tube passes thru the urethra and negotiated the curve up to and they the urethra. I am confident he has had worse pain elsewhere. So glad to know you are meditating.
Oh my 🙏. My doctor put me on Effexor for my depression and hot flashes, I found that the higher the humidity the worse the hot flashes, Don’t be afraid to find a good councilor,my wife did and she has felt a lot better. Started getting neuropathy the last two nights. Can’t imagine 20 plus years 🙏🙏🙏🙏 fight that monster
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