My Brother's Story (20yr old with ALCL-Misdiagnosed Twice)

nothernstar · New User Joined: 08 Jul 2008 Posts: 1

Hi,

I have been reading this forum since late 2006 when my brother was first diagnosed with cancer. I got a lot of support and encouragement reading your posts and learnt a lot.

I thought of sharing my brothers story with you all.. Who knows maybe reading it might give some hope to someone who badly needs it.. the same way I got it when I needed it ( I still read the forums… I guess I am still scared for him ).

Late 2006, I think somewhere in August, I started noticing that my 20 year old brother was getting very thin. But we never thought it was due to a cancer or anything as such as our family had no history of cancer and since he was quite thin like my dad. Then he went on a university outing and came back very ill with fever and cough. We thought it was the viral flu and gave him normal medications.. but it kept on getting worse, and he was admitted to hospital.. He was not responding to any of the antibiotics.. And his lymph nodes started swelling up. Finally they did a biopsy, and it turned out he had cancer. Me and my family found it hard to believe as he was a very healthy boy other than for the hair problem he had (alopecia areata). At first they said he had "Hodgkin's Lymphoma (Stage III)" and the Cancer specialist started treatment for that. After the first chemo.. his swollen lymph nodes cleared and so did his fever. My father wanted a second opinion . So he took him to another specialist.. This time the specialist said it cant be " Hodgkin's Lymphoma (Stage III)" , it should be Non-Hodgkin's and a Biopsy was done again.. this time they said it was T-Cell Non Hodgkin's Lymphoma (Stage III) and immediately stopped the medication he was taking and started on another round of chemo for NHL( He only received one round of chemo for Hodgkin's and he responded really well.. so we found it hard to believe when the guy said it was NHL) .. Anyhow after awhile we did another biopsy as we weren't sure.. That was after his second chemo round I think.. and this time they said it was definitely Anaplastic Large Cell Lyphoma and it was ALK positive (Stage III) (which was a good sign), So again the treatment was changed. However after like 3 chemo rounds his cancer had cleared and he was in remission but the chemo was continued for 6 months. In April 2007 they gave the last chemo round.

He stayed strong all throughout the cancer and faced it well. The cancer did not relapse and I hope it won't.. atleast till he gets really old. I think he is much stronger than people of the same age. Most people when they get to know they have cancer, goes down emotionally, but he never gave up hope.. At the time he was diagnosed he just started the first year of his Degree majoring mathematics.. He currently has a GPA of 3.9/4.0.

However even after he got well I kept on reading about the cancer..and what could have possibly caused it.. as it was weird that he got a cancer considering our family's health history.. Then I read this article where immuno-suppressive medications were linked with ALCL. My brother had alopecia areata ( he kept losing his hair since he was about 9-10 years old). Then I checked on the medications he was talking for that. They turned out be drugs categorized under immuno-suppressive medications. He was taking it for years with no success and finally the Doctor who asked him to take those stopped it saying its not so good, But he never told us at the beginning or at the point where he stopped it that such medicine could have side effects like cancer. Now we feel that it was those medications that he took, that caused him this cancer.

Well that's my brother's story. I hope this gives hope to someone who needs it. And I hope my brother has many more years without any cancer. I pray everyday for him and I hope my prayers will be answered and that he will have a good life.

His Sister

ChemoMan

Hi Thanks for posting it was very informative. Your rationale for posting was a good one and is also the reason you should stick around. Siblings of cancer patients very often come here for support and you could be of great benefit to them.

Anaplastic Large Cell Lyphoma is very hard to diagnose, I'm not surprised that he had 3 different diagnosis. It is very sensitive to chemotherapy, that is why your brother had the dramatic response to the initial chemo,even though the chemo was for HL. It also has a more favourable prognosis than the other aggressive Lymphoma's. If the T cells produce CD20 then Rituxam can be used and the prognosis gets better, but this is unlikely as CD20 is given off be B cells mainly. What is very encouraging for your brother is the fact that the T cells give off a protein called CD30. I don't think it will be long before a monoclonal antibody is produced to target the T cells. Once this happens your brother should have no worries at all Smile

I will have a look for you and see how the search for a monoclonal for T cells is going and get back here.

Cheers Smile

_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
http://cancerforums.net/viewtopic.php?t=9620

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