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Mantle Cell Lymphoma Diagnosis

Sheryl A
Posts: 3
Joined: Oct 2017

Hello All, 

My 59 year old husband was recently diagnosed with Mantle Cell Lymphoma. Small lump on the right side of his neck started the whole process.  We live on the outskirts of Houston and have been blessed to arrange an appointment with Dr. Hun Lee at MD Anderson in the Lymphoma and Myloma Clinic on October 31.  He will be the 1st oncologist we have seen. Also, other than a lymph node biopsy and the pathology report diagnosis no other tests have been done. 

My question is generally to others with MCL, what can we expect in terms of tests and treatment? 

And, more specific questions to anyone who has received treatment through MD Anderson - what was your experience? 

Any help is much appreciated! 

Sheryl

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Sheryl,

Illead is the go-to here for MCL information, since her husband has been fighting it (very successfully) for years.  Send her a private email via the CSN EMail funtion and she'll notince your post sooner than she might otherwise.

She and her husband have in fact even been commuting to MD Anderson in Houston over the last year for newer treatments.

Mantle Cell treatments have advanced more in the last five years than probably any other form of Lymphoma or blood cancers of any kind.  

max

Eleese
Posts: 2
Joined: Oct 2017

Max, my husband was as aso  diagnosed with MCL. How do I contact Illead? I can't find a search function for members email addresses.

po18guy
Posts: 1007
Joined: Nov 2011

MD Anderson is generally considered to be the top center in the US. Dr. Lee is absolutely well qualified to examine and treat your husband. As to the future, no one on earth knows - but, it will depend to some degree on the aggressiveness of the MCL. Some is aggressive and some is indolent (slow growing). Aggressive types are actually better to treat, as they are more likely to be placed in life-long remission. However, the indolent versions are not the horrible news that it would seem. They are chronic, manageable diseases, and many can expect a normal life span while dealing with them. So, in the cancer realm, there is much reason for hope and optimism. In case you have not seen it, here is  a good informational link: http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300157

illead's picture
illead
Posts: 844
Joined: Aug 2012

Sorry you had to wait for this answer and by now you have experienced MDAnderson.  Quite impressive and ominous, isn't it?  No doubt your husband will have a whirlwind of tests this week.  You are certainly very wise or have had good guidance to make MDA your first choice.  My husband Bill goes to Dr. Michael Wang, we were just there 3 weeks ago and go back Dec 4.  You are truly in the best hands, the MCL doctors there are extremly knowledgable and passionate to find a cure and they are on the leading edge in MCL treatment and research so your husband will get the best of care.  Don't be afraid if they want to put him in a clinical trial, they know what they are doing and we are waiting on a very important one ourselves.  I think at the end of this day you have come though it feeling very hopeful, encouraged and relaxed and by week's end even more so.  If you want to private message me just click on our picture and it will prompt you to send user a private message.  If you want to continue on this thread that is fine too.  I try to monitor this everyday but my sisters and I have been dealing with health issues of our 90 yr old parents so haven't been able to get on for a couple days.  Ask me anything you want but of course Dr. Lee and his staff have the best medical answers.  Also if Dr. Lee's staff comes in before him, be sure to ask them any questions also, they have a lot of knowlege and answers too.  Also if you need info on where we stay or transportation etc.  I will be glad to help.

Hang in there Sheryl, your husband has everything in his favor,

My thoughts to you both,

Becky

Sheryl A
Posts: 3
Joined: Oct 2017

I want to thank everyone who responded to my initial request. It has taken me awhile to get back since last week was "admission & testing" at MD Anderson. Yes, an exhausting week, but many questions were answered and we feel much more hopeful and a lot less anxious. :) Everyone at MDA was extremely kind and helpful and for that we were very thankful. My husband underwent testing - labs, bone marrow, PET scan - but we are glad to get started. 

We find out test results next week and I'm sure I will have more questions after that. 

Again, many thanks for the responses!

Sheryl

 

illead's picture
illead
Posts: 844
Joined: Aug 2012

that everything went well and know you both must be very relieved to know that you are getting the best of care.  I hope all goes well next week, please let us know.  You are so fortunate to live close.  We live in CA and the 2 mo. trips are getting a little old, but we know it is necessary and we are becoming pros Wink.

My best,

Becky

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