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T - Cell Lymphoma of the Small Bowel (specifically in the Jejunum)

KristenO
Posts: 1
Joined: May 2019

Hello,

My husband was diagnosed in March with T-Cell Lymphoma of the small bowel. It has been narrowed down to a very rare type, abbreviated as MEITL. It is very aggressive and prognosis is poor. However, we are getting treatment through Stanford's Lymphoma Clinic in Palo Alto and we feel confident he can beat this - it is basically at stage 0, no spreading to the lymph nodes, localized, my husband is only 38 and is in good health. Had no health issues up to this point and had moderate weekly excercise. 

Has anyone else experienced a similar cancer? MEITL was recently reclassified, as it used to be known as EATL Type II since it is different than EATL Type I due to the fact that there doesn't appear to be a celiac/gluten cause behind it. 

Symptoms are pain in the upper bowel (near stomach below the Duodenum and usually is found in the Jejunum), vomiting, loss of weight, grumbly stomach sounds, unable to eat hard to digest foods, etc. 

This cancer is so hard to find info on because most of the people that pass on from it are way farther along than he is. His PET and MRI's showed that it was only located in his jejunum not inside the lymph nodes, which has kept it from spreading to other areas so far. I am surprised others would wait so long to not do something for it being that my husband's pain was fairly acute and hard to ignore. 

He just had his second chemo treatment of CHOP (without the "O"). If you have this kind of cancer request not to get the "O" drug. It can cause a lot of trauma to your intestine and up your chances for a perforated bowel, which is why this cancer can be so deadly. Most people come in when it's already perforated, even before they are diagnosed and/or prior to chemo beginning. 

Please keep him in your prayers. We were just married in September and were planning on having a family. Our plans have been completely derailed by this. We had to save severeal vials of sperm in case the treatments make him infertle (Cytoxan is known to cause infertility).

So, game plan is we get a PET scan around the 21st, find out results on the 23rd and continue from there. If it looks like all is going well, we continue with the treatments and then at the end, my husband should be a candidate for a stem cell transplant. That will be tough on him, for sure, but I know he is strong and get through it!

Take care to all of you who are suffering and know your fight is not in vain! Keep on, keepin' on!

po18guy
Posts: 989
Joined: Nov 2011

Abbreviated history of my last 11 years. Very sorry to hear this. "CHP" as primary therapy? OK, well, it's an extremely rare sub-type of an extremely rare lymphoma. Where to begin... I would first have the pathology reviewed by another major pathology lab, as some of the more common lym[homas are misdiagnosed. Secondly, I hope that he has, not only a hematologist, but a research hematologist, as it can be crucial - it certainly was in my case.

You can visit the T Cell Leukemia Lymphoma Foundation website, as there is a wealth of information there. Honestly, as poor as the prognosis is for T-Cell Lymphomas, I would seek a second opinion on treatment, as there is no defined primary therapy other than clinical trial.

I can most highly recommend Dr. Andrei Shustov at the Seattle Cancer Care Alliance. He is a brilliant researcher, assistant professor and a wonderful clinician. Known around the world, he has saved my life a minimum of three times. 

p.s. the last prognosis I had was 10 years ago and it was then "extremely poor" It dropped several times from there. Keep hope alive.

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