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Feb 13, 2020 - 12:10 am
The MD Anderson fave me a life expectancy because I asked for that. It doesn't look nice. A story of a relatively young healthy adult who had 3 colonoscopies with 2 different docs and a scan that missed the first liver met over a year prior to diagnoses. Sure, they are not God and when mire information arrives tgey can start to go more or less accurately in a certain direction. The local oncologist is good, MD Anderson was visited as well as Sloan Kettering. 2 docs in Germany and Russia were contacted as well. They did it based on more arriving test results and a speed of a decease progression. Of course it is not in any way the exact correct statement but it doesn't look good either way and there if course may be sone deviation. Butt. |
Joined: May 2019
Oh Butt, I'm so sorry.. I
Oh Butt, I'm so sorry.. I can't even begin to say I know how you are feeling or what you are going through, however I do of course, understand. My thoughts are with you, as well as my prayers.
Joined: Jul 2016
Prayers Butt!
Prayers Butt!
Joined: Feb 2015
Sorry
Sorry for this Butt. My docs do not give me timelines. But when I talk to them, I tell them what I am pretty sure of at this point, barring some break somewhere. They do not say I am wrong or being negative because I lay it out pretty well and after 5 years, I sort of get the writing on the wall. Right now I am going full Hail Mary on things, other than the real bat s--t crazy things. Low risk high reward. I have a scan in about 4 weeks. Will see if it works.
Joined: Feb 2009
Sorry
Sorry it is not better news. My Prayers are said constantly for people on this board.
Kim
Joined: Nov 2011
We form our own survival curves!
I offer the following for perspective. Started with a rare and aggressive non-Hodgkin's T-Cell Lymphoma (PTCL-NOS) at stage IV with "innumerable" tumors - the patholigist stopped counting at 50. Poor prognosis. Relapse with 6 months of treatment, assuming you survive through treatment, drops the prognosis to "extremely poor." I relapsed immediately, which gave me a 3 month median survival. Went into clinical trial and back in full response. Relapsed again, when no prognosis could be given. This time, the lymphoma had mutated into two sub-types (including AITL), only one of which would respond to treatment. I had 4 PET/CT scans in a row which allstated "Disease Progression." At the same time, from age and treatment, I developed the precursor to Acute Myeloid Leukemia: Myelodysplastic Syndrome (MDS), which took over 26% of my marrow. The lymphoma had defeated 12 drugs and I now had three simultaneous cancers, essentially Stage IV times 3.
Providentially, I had a brilliant hematologist at a research facility. He devised a new combination of three older drugs, which eradicated all three cancers in only two cycles. I went on to a stem cell transplant and now have no evidence of cancer. It was 11 years ago now that I had a 3 month average survival. This July, doctor and I will toast 12 years together. Sure beats three months.
To paraphrase Yogi Berra, "It ain't over until it's over."
Joined: Apr 2018
What were the 3 drugs?
There is a book out called How to Starve cancer where she beat her cancer using Metformin, Persantine and Statin--were any of these used in your case?
Joined: Feb 2020
Friends father
A very dear friend of mine has a father with Kaposi sarcoma. Doctors gave them 6 months to live. That was 8 years ago. There is still hope. Doctors dont know everything. They are human people and prone to mistakes. Just keep fighting and live each day to the fullest
Joined: Feb 2020
Post removed, sorry.
Post removed.
Elainehd
Joined: Apr 2017
Post removed.