Went to my Oncol. We cannot make up ourminds when after ab't 2 mths. of taking Xtandi...I'm still here 2 pills every other day.....My walking is very bad....and so is movement of entire body.....I took a different kind of blood teste ...somethg. new...Oncol. said at this point they may be able to find exactly where cancer has gone..how far?? I know it's been prostate, bones.....Has anyonelse heard of this?
Dan...How are thgs. with you. Haven't heard....Hope you have had better news than me.
Also, Medicare and Blue Cross will not pay....thousands and thousands..Dr. Put it through company called Guardanthealth who hopefully try with Blue Cross. Anyone heard of this Guardanthealth?
Sidnw
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sidnw
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Do not know if this will help. Been on xtandi for 9 mo. Take at 8pm. Originally pretty drowsy after hour and a half. That has mostly gone away (mostly!) Taking lupron, xgeva, xtandi, and prednisone. Questioned prednisone as not usual with xtandi. Said it was to combat xtreme fatigue. Extensive spinal mets everywhere, lymph nodes and everything. Chemo seems to have knocked out lymph nodes problem (for now?) Not a dr. but the one i have has phd in chemo pharmacology so going with the flow. Do not know if xtandi is fatigue cause for you, don't really know if prednisone is helping me or what but i'm maintaining fairly well. Just a comment on my situation. We are all so different, and all so alike. PSA .4 for last 5 mo. Good luck my friend.
Hi Sid, Good to hear from you! I am not sure of the blood test you speak, was it some type of genetic testing. I am hangin in there psa 120 stable. Saw some uptake on bone scan on skull, I am not putting much into that though. I feel good, go again for chemo#17 on Weds, than 2 weeks from Monday we fly to England to spend some time touring Cornwall peninsula. Call Me any time Sid, I am always here until we leave for England
the best advise we can give each other is to make a bucket list and live it, as hard and as long as you can. Do not spend your remaining days in worrying about anything, including getting obsessed with the fight. Again, there is no magic pill, no cure once it has spread and in the last phase, it matter little as to what one does.
The only control that we have is choosing how we wish to spend our remaining days, and I say, seek the sunshine and hug those you love every day. LIFE LARGE!
Have a great trip Dan. I was born in England, you've picked a nice to of the year to visit. I haven't done Cornwall, but I'd like to take my kids there in the next few years.
I'm so glad you're doing well!! Stable psa is great!! Guess chemo is doing its job. I'm also so glad you're still traveling and now going to England! Say hello to England for me 😊😊😊. Have a blast and keep smiling. You're a sparkle of hope to so many and you're so awesome with helping so many!
Jackie, Thank You for your always kind words to me and all of us in this forum, You are a ray of sunshine in a sometimes dismal day. You are a word of encouragement to all. Thank You
Thank you Dan. Everyone here has something special. Some make me laugh out LOUD often.... giggles, all stories touch my heart, some bring back memories and some make me think..... Wow....I would have loved to have had them as a part of my life long journey..... and that's what you've all become...... So blessed we all are to have each other here! You ALL matter to me.
Touched bases with a couple here in AZ. Great experience to put faces with names. Will stay in touch for duration be that months or the years we are planning on. Site is fine, but face to face is better. Use messaging logo top left and contact someone who's posts lead you to believe you could be a real friend, may work out and nothing to lose.
The blood test you had may have been the Guardant360 test to see if there are any genetic abnormalities in your tumor cells that might be matched to potential treatments.
If there were questions about insurance reimbursement, the Guardant Access folks might have been activated in an effort to help you with coverage/costs.
You're right Charles...That is exactly the test and will see my doctor in a few wks. and should know more. It definitely was the Guardant360 Test...Thanks for your info.
Just a suggestion, did you and doctor talk about Provenge? I went through the six week treatment and it work well. Eliminated lung nodules and one tumor in my shoulder.
Good wishes, good thoughts and prayers sid. Everyone is so different. Xtandi knocked Elgie down big time. He stopped after 2 to 3 months. I hope you find something that helps.
Sid, I think ctarleton(Charles) may be right when he wrote below it may be Gaurdant 360 test, which is a test to find genetic mutations ,in an effort to use targeted meds to battle cancer, kind of the latest thing really. Also the Doctor may have called Guardianhealth to as they may provide help in paying for this test, not sure but sounds right. Keep on keepin on Sid, I was thinking I had not heard from you, and there you were.
Dan, I really feel you are one of the most knowledgeable men regarding all of these tests the men are taking...plus. You have answered so many thgs. we were really completely Not in the Know about. I used to be very much in the know on anything medical since I was active in City of Hope who are working on so many new and hopefully successful discoveries. Since Sid's cancer has gotten worse...he sits or just rests a lot. This is a man who had dear close friends ..some of whom have died from Cancer themselves.
You are quite a marvelous guy and we can't help but wish you our sincerest good luck in this battle. I noticed Sid felt a little better after talking to you.
I hope your trip is a great one for you and your wife. We haven't been to Europe. Just Jamaica, Saint Thomas, Aruba, Mexico ..the rest in the States. Please let us know about your trips favorite happenings.
So theres a buzz word used today called “precision medicine” basically its taking tumor tissue from a cancer biopsy or a blood sample and looking at the genes of the cancer (the blueprints) and there will be certain mistakes called “mutations”. These mutations are what cause a cancer . So all of breast cancer or all of prostate cancer etc are not caused by the same mutations. So now we have some treatments that may work for one type of prostate cancer but not for another type of prostate cancer. It has NOTHiNG to do with where the cancer is just what caused it and what may help. So if they take a biopsy sample and send it in that would go to one of two main companies: “foundation medicine”or “caris”. . There is also a blood test version of this that Doesn’t require a biopsy this is called “Guardant 360 Health” thats what you had.
2 yrs ago I had a sample sent to Foundation 1 they found elevated pten and hedgehog, last week I got results from guardant 360 they found elevated ar L702 h mutation that supposedly prevents response to xtandi/zytiga ,and also the pten, I had low ar amplification I posted my results on my page that can be found by clicking on my picture, My understanding is that ar L702h can be caused by long time prednisone use , I wonder if going off prednisone would allow xtandi to work again.
L702h isnt a definite that they wont provide any benefit. You may not want to use them alone but in combination with other treatments ie LU177 or Jevtana may provide additional benefit
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