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ChuckLB's AILT Blog

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ChuckLB

MY AILT EXPERIENCE

Posted by ChuckLB in ChuckLB's AILT Blog on Apr 21, 2009 12:25:16 PM

(Still under construction: more information and discussion will be added))

MY AILT EXPERIENCE

(Revised July 19, 2011)

 

You can email be at: chmybell@yahoo.com

but I suggest you copy my email address into the address line of your own email.

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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

 

 

http://annonc.oxfordjournals.org/content/vol13/issue1/images/medium/mdf033f4.gif

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 me a little hope:

 

Survival of AILT patients who receive CHOP-like chemo followed by autologous stem cell transplant.

 

 

 

image002.jpg

 

The above graph is "Figure 2" at the following link:

 

http://www.haematologica.org/cgi/reprint/88/11/1272?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=1&andorexacttitle=and&andorexacttitleabs=and&andorexactfulltext=and&searchid=1&FIRSTINDE

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 autologus 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 (at Emory University's Winship Cancer Center in Atlanta*,  404-778-1900) and one of them told me "We appreciate Dr.X's opinion but we do not agree with his treatment plan". The treatment plan my doctors 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 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 March 4, 2011) Here is a link to an informative page on the website of the 'National Organization for Rare Diseases':

 

http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Angioimmunoblastic%20T-Cell%20Lymphoma

 

and this is the link to their home page:

 

http://www.rarediseases.org/

 

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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

 

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF&ArtikelNr=157973&Ausgabe=240377&ProduktNr=224106&filename=157973.pdf

 

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Now here is some information to closely related subjects.

Most of the following applies to lymphoma in general not specifically to AILT

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(added March 22, 2010)  from:    http://www.professional.cancerconsultants.com/news.aspx?id=31215

 

Positron  Emission Tomography (PET) of Value in Lymphoma

 

Researchers  from Italy have confirmed the value of PET scanning over conventional  CT scans in the management of patients with Hodgkin’s disease (HD) and  non-Hodgkin’s lymphoma (NHL) after initial remission therapy. The  details of this comparison appeared in the August 30, 2004 issue of the British  Journal of Cancer.

Whole-body PET scanning with FDG is an  important tool in the management of patients with cancer. However, there  are limitations of PET scanning due to normal physiologic FDG  accumulation in the kidneys, ureter, bladder, stomach, and bowel. Highly  metabolically active tissue can also mask the detection of nearby  abnormalities. PET scanning has been used to stage patients with HD and  NHL, but it has not been clear that the added benefit outweighs the  increased cost associated with this test and therefore, it is not  considered a routine test.

In this study, researchers performed  PET and CT scans after induction therapy in 41 patients with HD and 34  patients with aggressive NHL. The following table summarizes the results  of this study:


Number of Patients

Relapses

PET+/CT-

5

4

PET-/CT-

29

0

PET+/CT+

11

10

PET-/CT+

30

0

The  researchers reported that the actuarial relapse-free survival rate was  9% in the PET+ subset and 100% in the PET- subset. These authors also  stated that all five patients who were PET+/CT- had biopsies performed,  which were positive in four patients. There were also two patients who  were PET-/CT+ who had only fibrosis on biopsy. These authors concluded  that PET positivity after induction treatment in HD and aggressive NHL  patients is highly predictive for the presence of residual disease,  while “PET negativity strongly suggests absence of disease.”

Comments: This and other studies suggest that PET scanning is of value in  managing patients with lymphoma.

Reference: Zinzani PL, Fanti S, Battista G, et al. Predictive role of positron  emission tomography (PET) in the outcome of lymphoma patients. British  Journal of Cancer. 2004; 91: 850-854.

 

 

 

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(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.

.....

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.

....

"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

 

http://www.ncbi.nlm.nih.gov/pubmed/17454592?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

 

 

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CCDRT

 

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 "chemo sensitivity testing". 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 be discarded. The first telephone, Automobile, radio, or television did not work well either. There are labs that do CCDRT testing and they claim that the new methods work very well. I feel that there needs a new massive test of CCDRT. 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

 

NEW (added July 19, 1911) A recent article in Smithsonian magazine (May 2011 page 34) discusses Gleevec (Glivec) and how it is leading to other targeted therapies and to "personal oncology" . To me, a procedure like CCDRT would seem to have been an early effort in the direction of personal oncology. Also, it seems that CCDRT, or something like it  will need to be revisited if therapy is to be tailored to the individual. Otherwise they will be using the patient's body as a laboratory.

 

 

An interesting discussion thread on the subject of CCDRT can be found here:

https://www.cancercompass.com/message-board/message/single,1414,1.htm

 

 

 

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