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Alk negative anaplastic large cell lymphoma/any advice

AmyMAllen
Posts: 10
Joined: Apr 2016

I am still in the staging process. Still waiting in bone marrow results, blood results, and they want a clearer pic of my liver (MRI). Pet scan shows lymph nodes look good. 

 

I got the diagnosis 2 days before my 41st birthday. It was discovered because I had a mass come up under a robotic hysterectomy scar from endometrial cancer.  At first, I thought it was a recurrence, but it is totally different and not related. 

Anyone out there with Alk negative ALCL?

 

Amy

po18guy
Posts: 1005
Joined: Nov 2011

As to lymphomas, ALCL is a T-Cell Lymphoma. These are rare and ususally aggressive. The ALK- variety is more of a challenge than the ALK+ version. I do not know where you are located but, IMO you definitely need the services of a T-Cell Lymphoma specialist. A good percentage of oncologists and even hematologists may never have dealt with it. As with all lymphomas, it is not a solid cancer and may travel anywhere in the body that it desires to. Thus, surgery is virtually never done - the exception being if it forms a tumor that is pressing on a vital organ and is an immediate threat to body function. Time can be of the essence, even though lymphomas are not normally an emergency. The sooner you obtain either the care of, or the advice of a T-Cell specialist, the better off you will be.  

The standard old-line lymphoma treatment of CHOP has a poor record against almost all T-Cell Lymphomas. The normally recommended first-line therapy is clinical trial, if there happens to be one. However, as dire as this sounds, there are an increasing number of therapies that show promise. There are precious few T-Cell experts in the US (if that is where you are). I know of those in Seattle, New York City, Connecticut, Florida and Texas. There is a foundation that has been established to assist T-Cell Lymphoma patients: www.tcllfoundation.org There is a page at the site which lists the National Cancer Institute designated treatment centers. You will receive the best treatment at one of them. Even so, you need someone who has stared down T-Cell Lymphomas, as the experience is priceless. 

Personally, I have fought two varieities of T-Cell Lymphoma over the past eight years (PTCL-NOS and Angioimmunoblastic T-Cell Lymphoma). Here is a link for additional information regarding ALCL:  ttp://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300143

All the best to you.

 

po18guy
Posts: 1005
Joined: Nov 2011

Some well-intentioned, or profit-driven members will post questionable information. We are all far better off sticking to science-based medicine. 

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