New stats in my profile, radium did not work for me. Also may have caused a secondary blood cancer. Waiting for those tests to come back to see what variety I may have. If anyone want to take a peak and offer any suggestions - we're all ears. This is such a monster...TIA
Secondary Cancer? What tha' heck! - Advanced Prostate...
Secondary Cancer? What tha' heck!
Don't know if the monster in bones was caused by RX or it just dug in from mets.. hard to tell. I looked at Mayo SOC when I was in Flag, but they were to ridged. Went with Northern AZ Onc. Drs allowed me to extend chemo to 9 cycles not 6 and added Xtandi after rising PSA after #4. Living with neuropathy from over treatment,, but zapped my aPca. Now in remission. Best of luck with your version of this "different for each of us" beast. Mayo Phoenix did a great job with a friends Ca. hope they get yours too.
I your profile, you indicate that you had bone marrow invasion with PCa as the primary about a year ago. Is this different or more of the same?
This is the first time we’ve been biopsied. Prolly another Mayo typo..I’ll take a closer look. Thanks for the heads up!
I was diagnosed with cll/sll about two years after being diagnosed with metastatic castration resistant PC. It was a surprise to me; but fortunately, I'm on a watch and wait with that particular problem. I'm currently doing Jevtana.
Thanks so much! You’re always so kind and helpful to me! Stay well!
In your profile your #11 and #12 entries are dated 2020 but I assume they should be 2021? Hubby had same thing happen with radium - he had 1 treatment, a huge pain flair and his blood counts tanked. Presumed bone marrow infiltration and tried weekly low dose cabazitaxel to target that. Might want to ask about that - it has about a 30-40% chance of working.
Good luck.
Yes, one of my issues with Mayo - they are flippant with their notes... I copied and pasted directly from their clinical note🙄
Thanks, I will check into that - prior to this diagnosis cabitaxcel was already on deck for when he is strong enough - now waiting on what type of infiltration we've got. Good luck to you, and thanks again for the response!
They tried the weekly low dose cabazitaxel because his blood counts were so low. He’d already had a lot of chemo by then.
To clarify, we never got to Cab. waiting waiting waiting for counts to go up. Blood transfusions are s-l-o-w-l-y bring the rbc up. Doc wants to try to treat blood issues before the prostate issue and as he puts it "clear the weeds from the garden". Appreciate your input
Unfortunately, secondary cancers are a risk with any type of cancer and radiation doesn't help. Unfortunately, we don't have many choices sometimes. I read that you also had chemo which is statistically not very effective but it knocks the cancer cells (along with the rest of our cells) out momentarily. Long-term, I think it has little value.
I have had SBRT for a lesion on my left femur but not radium 223 treatments. That's a different league. I think once bone mets get going, the goals is to be palliative which is one of the reason I had the SBRT. However, the bone marrow can be noth the key to a cure or a worse disease, especially blood cancers.
I have nothing to offer by way of treatment recommendations, other than to say that quality of life should be considered when thinking about other clinical trial treatment options. If they offer little return for the effort and extreme side effects, I would think about if continued treatment gives you what you want. Some people want a longer life at any cost, no matter how short the time extension or the price and others would rather enjoy time we have for as long as we can without active treatment of the disease. I don't know where you are with it but I wish you the best in finding the road that's right for you.
I developed a secondary cancer too, mine was melanoma that required substantial surgery to my nose. Fortunately they were able to remove the melanoma before it had spread. It appears that both cancers were related to one of two germ line genetic mutations that I have.
Ed
Ed, I don't recall if I ever mentioned my secondary cancer to you. If I did, I don't care and I will tell you again.😎 I too had a melanoma (on my neck) that matastasized to my lungs. I am being treated with Keytruda and it's working.
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/10/2021 11:22 PM EST
I had two melanomas about 18 years after initial treatment in 1997 (Bracy and EBRT). Both were cut out with no additional treatment needed. In 2016 I had an additional 8 weeks EBRT for lymph node involvement and four years later DX with Multiple Myeloma. Completed treatment for MM and I am in total remission at this time although there is no cure for MM. Best of luck in your treatments!
Wow! Great news - praying for the same!
How have your platelets count been running? Did the Ra223 kill them too?
We are at 193, right in the middle of the "range", WBC are high - haven't worked that one out yet. Really hoping the new test results open a window to get this thing going on some meds.