nder construction: more information and discussion will be added))
MY AILT EXPERIENCE
The new website is impressive. Thanks to everyone who had a hand in creating it..
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Here are a few comments about my ordeal with angioimmunoblastic T-cell lymphoma (Also called AILT, AILD, & AIL) .
It is a terrible experience to be told that you have cancer. That was the first shock! Eventually, after many blood samples, and a CT scan, I was told that the lab tests were completed and I had a rare type of lymphoma called “AILT” or Angioimmunoblastic T-Cell Lymphoma.
So I rushed home and googled it. To make matters even more dismal, I found the following chart which indicated that I had a 10% chance of survival. Not only did I have lymphoma, but I had what seemed to be the worst kind of it!
Survival of AILT patients is 10% according to this graph
This graph is "Figure 4" at the following link:
http://annonc.oxfordjournals.org/cgi/content/full/13/1/140#MDF033TB6
But here is newer data that gave be a little hope:
Survival of AILT patients who receive CHOP-like chemo followd by autologous stem cell transplant.
The above graph is "Figure 2" at the following link:
Then download the .pdf file. If anyone has a problem downloading the .pdf file, email me and I will send a WORD conversion of the article.
This article was published in Haematologica/Journal of Hematology Vol 88(11) Nov 2003. (just 2-months before I became ill). It showed that there could be a 60% chance for "long term survival" for those with my disease, when CHOP-like chemo, followed by high dose chemotherapy (HDCT with auto stem cell transplantation was used as the first line therapy. (Note, part of the reason that the results for first line therapy is significantly better than the results for subsequent therapy may be because some patients are cured by chemo alone. That is, some of the patients who go into stem cell transplant as part of first line treatment, have already been cured by chemo alone, but that is never the case for second line treatment).
My doctors wanted me to get a second opinion from a doctor at another institution in another city. I will not identify the place, and I'll just call him "Dr.X". So I went to see Dr.X. He confirmed the diagnosis, but subjected me to a terrible experience by telling be that the median survival time was 12 to 30 months. He didn't offer much hope and his recommended treatment that consisted of palliatives. Fortunately, I had already read the second article which shows that I had a fighting chance. (This article was very new then). So I just looked at him and thought "could I know something he doesn't?"
I was relieved when I returned to my own doctors and one of them told me "We appreciate Dr.X's opinion but we do not agree with his treatment plan". The treatment plan they had in mind was CHOP chemo, followed by high dose chemo with an autologous stem cell transplant. Which was exactly what the authors of the second article had found to be 60% successful.
So I began my treatment starting with with 4 rounds of CHOP. This series of infusions was called called "induction". After induction, a few million of my stem cells were collected and frozen. This was followed by two more rounds of CHOP called "consolidation".
After some period of rest, I was scheduled for my high dose chemo and transplant. Understand that there is nothing curative about simply removing stem cells from a patient's body and replacing them. But this procedure allows the doctors to use a dose of powerful chemo that otherwise would kill you. Then they cone to your rescue with your thawed-out stem cells.
The high dose chemo was not a pleasant experience. If you have to have it, just try to live through it the best you can. Expect to be unable to eat for about a week. Expect mouth sores, diarrhea, vomiting and a very fatigued, listless feeling. I was in the hospital about 3 weeks. For some it is a month or more. Expect to loose weight, and for it to be 3 months before you feel reasonably well. However, you will be able to eat when you are released and the worst is over in couple of weeks after that.
NEW (Added November 20,2009)
Two Units of Umbilical Cord Blood Reduce Risk of Leukemia Recurrence
ScienceDaily (Nov. 15, 2009)
Excerpt:
A new study from the Masonic Cancer Center, University of Minnesota shows that patients who have acute leukemia and are transplanted with two units of umbilical cord blood (UCB) have significantly reduced risk of the disease returning.
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Michael Verneris, M.D., and John Wagner, M.D., who specialize in research and treatment of children with cancer, led the research team on this breakthrough study. The results are published in the current issue of the scientific medical journal Blood. This study was funded with grants from the National Cancer Institute and the Children's Cancer Research Fund.
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"Our analysis showed that patients in first or second remission from the leukemia had a significantly lower likelihood of leukemia recurrence if they were transplanted with two UCB units than if they were transplanted with one (19 percent vs. 34 percent)," says Verneris.
"We believe our finding provides evidence that using two units of UCB for transplantation may be more effective in preventing leukemia relapse and gives hope to patients with hematological malignancies so that they may live cancer-free," he says.
The full article is at the following link :http://www.sciencedaily.com/releases/2009/11/091114080600.htm
(thanks to sach for first posting this link in "Blood and Marrow Stem Cell Transplantation")
This is cutting edge stuff. There are still a lot of unknowns, like; does the same benifit result with lymphoma patients?
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LINKS
The first link has some information about more recent work in AILT. See especially the "Prognosis" section which mentions some treatments which have been successful and do not involve high dose chemo and stem cell transplantation. This may be especially interesting to people who are not candidates for these severe treatments.
http://www.thedoctorsdoctor.com/diseases/ptcl_angioimmunoblastic.htm#pgx
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The next link brings up an abstract about the use of drug called HuMax-CD4 in the treatment of AILT. It may be of interest especially to anyone who cannot tolerate chemo.
Using HuMax-CD4 in treatnment if AILT
Treatment of a patient with a nodal peripheral T-cell lymphoma (angioimmunoblastic T-Cell lymphoma) with a human monoclonal antibody against the CD4 antigen (HuMax-CD4).
http://www.ncbi.nlm.nih.gov/pubmed/15965283?dopt=Abstract
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This link will bring up an article about using cyclosporine to treat AILT. This another topic that may be of interest to AILT patients who can.t tolerate chemo, or who have relapsed.
Using cyclosporine in the treatment of AILT
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The following 2 links are to sites that pertain to what is known as CCDRT (Cell Culture Drug Resistance Testing). This is also known as “sensitivity testing” or "chemosensitivity testing" (coming from the other direction). This test consists of growing a patient’s cancer cells in a cell culture outside of the body, then testing them with different types of chemo with the object of finding which of the drugs work best with those particular cancer cells. I find this subject especially interesting. However it seems that it was tried in the seventies and did not work well. So take it for what it is worth. I personally feel that it simply makes too much sense to discard. The first telephone, Automobile, radio, or television did not work well either. The labs that do CCDRT testing claim that the new methods do work very well. I feel that it needs a new massive test. If it works it could avoid putting the patient through hell and then being told that the chemo was not working. Also it would avoid building up the cancer cells immunity to other chemo by using one that is not very effective. It seems especially appropriate (if it really works) when a patient has relapsed, or failed chemo.
http://www.virtualtrials.com/assay.cfm
http://weisenthal.org/pamph2_wcg.pdf
An interesting discussion thread on this subject can be foubd here:
https://www.cancercompass.com/message-board/message/single,1414,1.htm
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Discussion of AILT as a unique “enitity” This discussion may be too technical for many of us. The link will pull up a .pdf file.
Angioimmunoblastic T-Cell Lymphoma (AILT): A Unique Clinical and Pathobiological Entity
(I will post more soon)------
