A life expectancy is given by MD Anderson

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.

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.  

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."  

po18guy said:

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."  

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?

elainehd said:

Post removed, sorry.

Post removed.

Elainehd