I didn't want to write this maybe because I won't have to admit it until I wrote it down - but I owe it to you guys.
So after radiation and 2 yrs of ADT/Zytiga where my PSA was undetectable - i went on a vacation. Then my PSA started to come back - I had an initial PETscan in October 2022 which showed nothing and waited for the PSA to rise. I had the second scan on May 1 which showed two hot spots - a T9 met and another spot on my cerebellum .
I started with Eligard early in May followed by SBRT on my T9 met. I had surgery on my cerebellum at the end of May. The tumor was extracted and tested and was found to be a glioblastoma. So I have two different types of cancer.
Interesting that the progression of the cerebellum lesion followed the progression of the PCa - meaning that the symptoms increased as my Test. increased - but apparently just a coincidence .
I have started chemo and proton radiation and things look as good as they can but the best I can hope for is a couple of more years at best - there is an electowave technology that shows promise (octune) but it has only been approved for upper brain by fda for upper brain and not cerebellum. We are working thru this and I hope I will be approved - the cost is $20,000//month so financially not possible.
This really sucks - but it makes every hug from my wife, kids, and grandkid more precious. I'm 71 and have been blessed with a life that i don't deserve. I just hope for a couple more years to take my kids to europe one more time - to sit in a cafe with espresso in the warm sun.
Please no tears for me - you are never ready to leave this world but when i look back, I've done more than most Iowa farm boys and have had the best wife of 40+ years and a family that is smarter than me - I am very proud that I have people that i consider close friends for around the world.
I'm not gone yet and will keep you updated
shalom
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PabloK
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it showed up as a met on the PSMA PET scan - my PC MO said that it isn't unheard of - she has seen it for thyroid cancers - just strange that it develop at the same time as the PC. And apparently its very unusual in the cerebellum.
as always, there are technologies on the horizon - some very interesting work on vaccines - one of which made the gen news (Lester Holt) so hopefully something will show up
My MO started me on Lupron in January + starting Erleada this month (me: stage 4 with bone mets ) . At the same time as starting the Lupron he wanted to start me on Xgeva. I then told him I had scheduled 2 dental extractions with 2 implants. The MO then communicated to the dental surgeon that he could delay the Xgeva for one year. (The surgeon feels that in this time frame the dental work can be done safely without possibility of ONJ). So I am not on Xgeva. Neither myself nor the dental surgeon asked MO to delay Xgeva, I have other dental options.
My questions :
1. What is the accepted method of determining when to start Xgeva treatments...in a scenario without dental work?
2. Do you think waiting one year could have bone repercussions?
Some background I had a DXA in Jan 2022 T-score in +- 1range . Also taking 1000 iu's D3 + 1200 mg Calcium daily for unrelated condition. Thank you so much for your time.
You can either start a new public thread by clicking the blue "write" button on the upper right of this page, or you can send me a private message by clicking on "chat" on the upper left and typing "Tall_Allen"
Make the memories, none of us are guaranteed the next sunrise on this side. Where in Europe do you want to take your kids? Sounds like a wonderful idea, I am sending you big hugs.
so true - we had plans for Colmar, fr that were abandoned bc of surgery - so now we are betting on this fall, given that i hold up to the chemo and thinking Rome this time.
Always sad to hear of bad news for someone......eeventually we all face such bad news...just the timing is different. Big congrats to you for being mindful of the blessings you have had in your life......even one trip to Europe would only be a distant dream for perhaps most folks not residents there. Re your diagnosis, hoping you will be the exception to the rule!!!!!!!!!!!!!!!!!!!!!!!
thanks for the kind words - and I will hope for the best. I'm at the same Mayo as my Mom was - and she was dx with multiple myeloma in the 80s with an expectancy of months - she lived for another 20 years. So I have hope but plan on living every day until then
I hear your pain and disappointment but It seems overtaken by the joy of all the loved ones in and throughout your life. Perhaps some have had more but for sure so so many have had less. I, like the many here are pulling and pushing for you.
I wish you love & hope my husband survived pancreatic cancer that was 30 years ago he's helping me with my battle with ovarian cancer.We make the best of every day its the only way for us. Always stay positive things are improving every day. Wish you love ❤ & happiness with your family. SheilaFx
Thank you for writing this. I am on a similar journey with another cancer. Hopefully I am a bit behind you in time, but I realise that every hug and laugh is so precious.
Pray that you get to Europe - let the heat drop a bit!
Go to Lido di Jesolo in Italy which such a fun seaside resort and a bus/water taxi ride from Venice. Enjoy your coffee in the sun in the world's most beautiful city.
God bless you and keep you and remember to laugh out loud as often as you can.
The one I'm in?? As long as they have good bakeries and espresso shops, i'm good. I haven't found a place yet that doesn't have something good about it. The only caveat is to stay away from tourist areas and find a place where you can shop like a local.
Laughing in the AZ mountains despite the 115 degree weather in phx
May God bless you/us. I am on a similar journey with prostate and bladder cancer. The treatments are kicking my butt, interfering with any real physical activity. But by damn it, I'm enjoying WHATEVER I can, always with gratitude for all the blessings I've had for 79 years, and with hope for more!
well, i just heard that medicare turned me down. It hasn't been approved for the cerebellum yet and they aren't sure if it will work.
If there is any good news, the surgeon said he got all of the tumor and i'm following up with proton radiation and chemo - and apparently cerebellum tumors are very rare, so i am going to interpret that into meaning the tumor won't come back as fast --I gotta have something.
I'm so sorry you are going through this. Prayers for a great response to treatment, and for healing and strength for you and your family. Just like you, our family is everything to us and we try to enjoy every moment we have together.
Your situation is very hard to accept and your attitude is right when faced with such news. Focusing on the time you have is so important. Yes, you need to seek out treatment but if all you do is focus on the disease and treatments, you miss out on life.
I hope that you are able to get an effective treatment that keeps PCa at bay. I also hope you are able to share your love with friends and family and to enjoy every moment.
Your an inspiration or I guess a reaffirmation for me of my thoughts too. My great wife. Great life. It of course makes it harder for you to have to add on another cancer. One not as forgiving as PC can be. Truly hope you have some treatment success. Life extension.
This mostly "Iowa farm boy" has been around the world as well to many continents. Hoping to get in a last trip to Japan but will require a lot of planning ( wheel chairs, e-bike, etc. ).
Wife and I were just talking about it this morning. She usually talks about it in a day dreamy la, la, land way but I was glad today she spoke more in terms of reality in relation to my shortcomings. She admitted today that I am probably not in shape to be going to Venice which she always wanted to do. I said yep. Whenever you start talking about it it makes me nervous I said.
so this kinda sucks - but my journey has told be to tell everyone around me, how important they are and why I love them so much. I start every morning hold my wife and telling her how much I love her.
what a wonderful post!!! I pray you enjoy every moment you have…..since none of us know how many that is!
My Joe has had one dose of Pluvicto and does not much more than sleep these days. CT scan tomorrow to see if the Pluvicto is working. Dose dos scheduled 8/4.
Blood work next Wednesday to find out why so much bruising as well as fatigue….
The not knowing is hardest of all…..
PabloK: keep on keeping on!! I hope you get that espresso in Europe!
So the man upstairs threw you another curve ball. I'm sure you have many years ahead of you to hit it out of the park. Take as many trips as your finances allow and of course spend lots of time with the clan. Laugh all the way and remember 71 is the new 55...
interesting how priorities change - i was saving for the future and now you realize that time with your family and making the few memories that you can is much more important. I plan to make every day as good as possible
Sorry for your current situation but you have been in many ways blessed with full life wife kid’s grandkids. I often think of those poor young who are losing their lives in the Ukraine Russian war. Sad that we as a society still allow mad men to determine the lives of so many innocent people. So take your 70 years and enjoy every minute. I to do not know much time I have left turn 68 in a couple of weeks so I also feel like I’ve had a good run and I’m grateful for the blessings in my life. Have glass of wine or cup of coffee and enjoy the time you have left. God Bless you.
Effect of the alcoholic extract of Ashwagandha leaves and its components on proliferation, migration, and differentiation of glioblastoma cells: Combinational approach for enhanced differentiation
Ashwagandha (Withania somnifera) is widely used in the Indian traditional system of medicine, Ayurveda. Although it is claimed to have a large variety of health-promoting effects, including therapeutic effects on stress and disease, the mechanisms of action have not yet been determined. In the present study, we aimed to investigate the growth inhibition and differentiation potential of the alcoholic extract of Ashwagandha leaves (i-Extract), its different constituents (Withaferin A, Withanone, Withanolide A) and their combinations on glioma (C6 and YKG1) cell lines. Withaferin A, Withanone, Withanolide A and i-Extract markedly inhibited the proliferation of glioma cells in a dose-dependent manner and changed their morphology toward the astrocytic type. Molecular analysis revealed that the i-Extract and some of its components caused enhanced expression of glial fibrillary acidic protein, change in the immunostaining pattern of mortalin from perinuclear to pancytoplasmic, delay in cell migration, and increased expression of neuronal cell adhesion molecules. The data suggest that the i-Extract and its components have the potential to induce senescence-like growth arrest and differentiation in glioma cells. These assays led us to formulate a unique combination formula of i-Extract components that caused enhanced differentiation of glial cells. (Cancer Sci 2009; 100: 1740–1747)
thanx - it does give you laser focus on what is good - I start every morning by telling my wife I lover her and she is the most beautiful thing I've ever seen - and why wasn't I saying that before
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LU177? Or? So many questions!
Return of spinal soft tissue Mets. What to do?
SOC is working for me - so far anyway.
