Leswell update and questions - Advanced Prostate...
Leswell update and questions
If anyone In Stage Four Prostate Cancer is able to open this, please let me know. Leswell
I got it open. (Declined to sign-up, and said open anyway. Saw the text, and a couple of included photos)
Charles
Here's a copy of the text:
Leswell
update and questions
Hello to Jack, Dan,
Nalakrats
,
Gus, and more. I am back on
Lupron
after a three month break.
I was aware of the doubling of my
PSA but not that it had risen to
169.22 until a week ago. After one
month back on
Lupron
, my PSA
has fallen to 96.14.
Whether that
has anything to do with the added
estradiol patches is one of my
questions.
I requested the patch back in my
more uninformed days due to
such evidence as the following: (a pointer arrow to a list of side effects - not shown)
A second question is what to do
about the E patches! At my
request, my E2 was tested and
found to be 62
pg
/mL.
Too high, right? We have been
given permission to switch to DIM
even though the oncologist
suggested continuing for now.
Could the patch, in conjunction
with the
Lupron
, be keeping me
from castrate resistant status?
I know that high doses of E can
achieve castrate levels sans
Lupron
, but do they ever work
together to lower PSA? If not,
why not?
The other question
today
is for
Nalakrats
about the exact form of
Cal/Mag/Phosphorus Chelate he
takes, and I quote. “Country Life's
Brand of Calcium-Magnesium
Complex chelated, which also has
Phosphorous chelate in it. Label
will say
1000-500
mg--Chelated. 2
tablets after Breakfast and 2 after
dinner.”
I cannot find this chelated form at
Country Life or Amazon or LEF.
Perhaps yours is being retrieved
from your vitamin cellar?
Btw, thanks for all the gator laughs
everybody including
Nal’s
sister.
More questions, you can be sure,
later. Les—and Jan in MN
Thanks for this. Hope no risks were taken by opening it! Risks abound these days especially with PCa. Meant to mention Patrick, too, who has done so much research. At the moment we’re trapping Japanese beetles in soapy water. They’re destroying basil and Fortex beans. We won’t be sorry to say goodbye to some activities. Jan for us both.
Unfortunately there are a lot of people here with Stage four. I have Stage 4D1 (met. to the pelvic area. As Stage four goes, D1 is a lot better than Stage 4D2 (met.to bones and/or distant organs) or 4D3 (return after being in check). The twist for me is that is Ductal prostate cancer. It is so rare that no one knows the best way to treat it. I had surgery (had to argue to have it as it had spread to the pelvic lymph nodes). That was followed be 38 rounds of radiation. I have been on Lupron for a year and they just added Zytiga.
Dear Dr. WHO,
We recognize your name, and it is good to hear from another unfortunate “Stage Fourer”. Thanks for replying. Although I don’t think I have your rare form of cancer, most of my cancer is the pelvis as is yours. Alas, mine was already metastasized to bone when diagnosed slightly over a year ago. (My profile is elsewhere on Health Unlocked or Inspire, so I won’t repeat myself.)
We will be interested in following your progress, and if we discover anything hopeful, we’ll be sure to pass it on. Be of good faith.
Leswell—and spouse
P.S. When to add Zytiga to Lupron is our question, too. Let us know how that goes.
Please look into the Stampede trial. A link is listed below. Remember, "People like us we have to stay together "!
nejm.org/doi/full/10.1056/N...
Thanks again, Dr. WHO. We have the results of the Stampede trial saved in numerous locations on this iPad which is why we are considering adding Zytiga and Prednisone earlier, not later. You are already taking the former, but you say elsewhere (just found this) that you are more depressed on Zytiga. My husband is not depressed. Not sure either of us can live with that.
Here is what I saved: The NEJM on June 3, 2017, printed the following trial conclusion: “Among men with locally advanced or metastatic prostate cancer, ADT plus abiraterone and prednisolone was associated with significantly higher rates of overall and failure-free survival than ADT alone. (Funded by Cancer Research U.K. and others; STAMPEDE ClinicalTrials.gov number, NCT00268476, and Current Controlled Trials number, ISRCTN78818544.)”
We feel more connected to all of you than I can say.
As I signed off to our middle-schoolers,
Mrs. S
P.S. Mr. S is sleeping, but we wrote to you together as we almost always do. HE, however, was the scarily good writer! Sleep well yourself.
Please do not let my comments on mood sway you away from Zytiga or related drugs. Unlike Lupron, which for me is a six month shot, Zytiga is a pill. Your husband can always stop if needed. Please know it may also be from prednisone, a steroid that you have to take with Zytiga. It most definitely is giving me intense dreams. Not bad dreams, in fact, most are happy dreams, but very detailed.
I hope that both of you had a great nights sleep and have a wonderful day today!
Zytiga is now proven highly synergistic with Lupron based on Chaarter and Stampede trials. I start next week for 3 months prior to surgery. Oncs at MD Anderson are big on the combo with prednisone . Thanks to all who share. My pharmacy tells me insurance is denying unless further input from the prescriber. The cost is around $9500 for 30 day supply. Gulp!
My medical oncologist had to argue with the insurance company to cover Zytiga. She was also working on "plan B", which was programs to help pay the cost. If your doctors could not convince your insurance company to cover Zytiga, please see if there are programs available to you.
Good luck!
i had to get on the phone with the insurer to get a dang eligard shot approved.
I had to do the same thing one time my payment was not received.Lupron self pay $6700...The pharma prices are out of hand...It's criminal...
I'm one of the 1900 on the Stampede trial here in the U.K., taking Abiraterone and Prednisone plus Zoladex.
Results have been quite remarkable. At diagnosis, PSA 600+, 7 substantial bone mets. That was nearly 6 years ago. Last PSA test was less than 0.1.
Quite well, but the severe hormone hit has, combined with the femur damage, left me somewhat disabled. So what, I'm still here.
Good luck all.
Martin
Thanks to all! Nalakrats, the above is going up on our refrigerator! I think the number for BIRM is below.
PO Box 13113
Coyote, CA 95013
(408) 612-4508
Leswell is taking 10,000 IU of D3 (with K2) so far. I will order the Calcium Magnesium Complex. We’ll do our best. All he’s thinking about at the moment are Japanese Beetles. It’s a distraction. Can’t believe we heard from Martin in the UK who is in the Stampede trial! Great community support. Hello to Gus, too. Enjoy your “conversations”.
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