Good morning fellow PC warriors and their loved ones.
It seems I’ve come to no man’s land in my battle with this stuff. I was supposed to start a trial at MDAnderson this week. However my HGB and platelets are too low. The cancer is attacking the bone marrow and not allowing for proper RBC creation.
I need some type of treatment to impact the cancer cells in the pelvis and long bones. Any ideas would greatly be appreciated.
I pray you all have as great a day as possible.
BT3
My hubby may be facing the same rejection regarding a trial and I know how discouraging it it will be.
Could you update us on the Xofigo treatments you were receiving? Your last post seemed to be say they were beneficial to you.
Perhaps expanding your profile regarding the history of prostate cancer and treatments will bring out more pertinent ideas from others. One good thing is that (I think) you are in Texas so close to MD Anderson.
The Xofigo did shrink some of the tumors but didn’t kill all of them. I finished the 6th dose on October 29, 2021. Since then my right hip and leg have been an issue. I had an MRI on 22 FEB and CT showing an increase of the disease. My HGB dropped to 6.7 last week while I was in the hospital and I had to get a transfusion. It was 7.6 on Monday morning when they discharged me after being at 8.3 after the transfusion on Saturday morning.
It is possible to do Xofigo multiple times:
onlinelibrary.wiley.com/doi...
However, I don't know if your blood work is good enough to qualify.
Unfortunately, all of the radiation-based and chemotherapies can further depress your blood cell production.
I don't like this post! You are in our prayers. Please get your rest! We hope you have better news in couple weeks.
Thanks!
Oh Tex, I am about the same age as you, and diagnosed around the same time. Do you still have the bone pains in your legs and hips? I am on Fentanyl patches, and it really helps with the pain.
Sending you a virtual hug and real well wishes.
I’m doing morphine long release with dilaudin for break through pain. I start 10 rounds of radiation tomorrow. Hugs back at you.
Just wondering Tex, did your PSA shoot up recently, or when the blood counts started dropping? Or is PSA still under control, but you want to get pain relief with the radiation?
I'm sorry your going thru this. What most of us go thru in our first 3 or 4 years of this journey you've gone thru in a year.
It sounds like your going to have radiation to your bone mets to relieve pain?
Sounds like met on femur/hips is most painful and big long bones where a lot of marrow activity for blood takes place.
In one of your earlier posts you mentioned that you had a bone biopsy.
I'm curious if you got the results from that.
Hang in there. Maybe radiating those bone mets for pain relief will turn into the icing on the cake in combination with what Xofigo achieved.
Sending good thoughts and positive energy. Keep on trucking.
Methylated folate (vitamin B9), methylcobalamin/hydroxocobalamin (vitamin B12), vitamin B6, iron, copper and vitamin A -- these raise RBC counts, and B6, B9 and B12 in particular are intimately intertwined in this process. Whether they'd help enough in your case I don't know, but maybe they're worth a try if they don't interfere with other treatments. Have your doctors suggested ESA shots or blood transfusions?
I have had 1 transfusion. and take a B complex vitamin everyday. I’ll ask about ESA shots. Thanks
B12 important in the right form for absorption. Others more knowledgeable will chime in but our doctor wanted liquid or under the tongue. However, we have been using one form Methylcobalamin. Grumpy's B12 tests have been good. It's a gummy form Spring Valley found at Walmart product of China.
My cancer is in the bones and everywhere else. Zytiga is working so far for me, 5 years now. You've probably have all ready done zytiga. Just adding anything that might help
Have you done any genetic testing to see if you qualify for any immunotherapy’s .
Might slow down progression significantly.
who was going to oversee your trial at MD Anderson...Dr. Dumbrava?...
Dr. Pilie and Dr. Aparicio
I have PC 4 Gleason 5+5. Have had 5 months of chemo infusions and 6 months of oral chemo (abirateron). Tumors developed in the pelvis (ischial) and ribs. 1st treatment of 6 of liquid Iridium 223 has reduced the ischial tumor where I can now sit without feeling the tumor pain is gone. 10 sessions of low dose radiation has eliminated the severe leg pain caused by the pelvis tumor. Best wishes.
Sounds similar to what happened to me. After six Chemo shots my white blood cell count was so low they had to stop treatment due to Neutropenia. I had to go on a course of Filgrastim injections to aid the production of white blood cells in the bone marrow. It worked and allowed me to continue with Chemo cheers, DD 😎
Thanks but it’s my RBC and Hemoglobin. The WBCs are fine
hi BigTex3 ... really sorry to hear of your challenge ... i encourage you to checkout envita.com ... best wishes ... Nous 
I wish you God's blessings..... Take care.....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/10/2022 9:44 PM EST
Sorry that I can’t offer any suggestions here, but sending wishes that you find something that helps. Lots of good support here from the group.
Following and watching--fortunately my bone mets haven't gotten to my bigger bones yet. Ribs and ischial tuberosity this time around. Starting RT next Monday.
URGENT NEED YOUR GUIDANCE FRIENDS SWITCHING STEROIDS OR LOWERING ABIRATARONE DOSE WITH BREAKFASTDad 60 years young, Advance stage, Multiple Mets, Had first round of chemotherapy. Need help and guidance on what to expect.
Now what? Could use some guidance 
looking for guidance?dad’s Biopsy diagnosis Gleason 4+4
Spam me with any stories of hope or guidance for my Dad - Gleason 10, bone mets in spine 
