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Results from Eye Biopsy

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi guys,

  Well...it isn't good. The report reads:

Microscopic Diagnosis: Right Medial Conjunctival Mucosa Extensively Infiltrated By Malignant Lymphoma, B-cell type,Diffuse,Low Grade. Abnormal B-cell Population Consistant with B-cell Lymphoma of likely Follicle Center Origin.

Stains reveal strong expression of CD79a, CD20, CD5,lesser expression of bcl-2 and CD3, and negative staining for Cyclin D1 and TdT.

Clinical correlation is suggested.

With that being said...basically this means I will be seeing my oncologist and getting appointments set up for Ct scan, blood draw, and possible BMB. So...it begins...again! UGH! Well...I am ready to fight this and go for broke...whatever it takes. I will keep you all posted. Today I just need to relax my brain and get calm again.

Love you all...Sue

illead's picture
illead
Posts: 874
Joined: Aug 2012

I can't believe it!  I am at such a loss for words.  You know how sorry and sad we are.  Of course we know what you are going through.  It is not easy.  It sounds like you have a very loving family, I know you will cling to them.  I said in my thread "$400....." that Ibrutinib is in clinical trials right now for other B cell lymphomas besides MCL.  You might want to mention that to your oncologist.  Here are the names of 3 doctors who are or were in on the research of Ibrutinib, Dr. Ranjana Advani, Stanford, Dr. Brad Kahl Univ of Wisconsin, Carbon Cancer Center, and Michael Wang lead author of the MCL study, Univ of Texas MD Anderson Center.  I hope this is of some help.  Please know that our thoughts and prayers are with you we know you are a fighter.  Love,  Bill and Becky

 

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Sue, I'm sorry to hear this.   The good thing is this has been caught early and should be very treatable. 

Have yourself a red beer, maybe two or three.  Hell, I may go out and buy the fixings for myself.

Don't need to say you're not alone.

Hugs,

Jim

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Thanks guys!,

  I appreciate the information Becky and will run it by my Oncologist. I have no idea what form of treatment I'll be getting, until more testing is completed. Hey Jim...a red beer sounds pretty darn good! It's the only way I'll drink beer. I know I'm not alone and I'm so blessed to have you all. I have faith all will go well and we will beat this back again. Timing sure sucks with us moving May 1st, but my family will get us through that and all will be good. Love you guys. I'll keep you posted. I have a feeling the next week is going to be a doozy!

Bring it on! Wink Love Kiss...Sue

Shoopy
Posts: 210
Joined: Jul 2013

Sue, I am so sorry to read the Dx.  However, you are correct--you can beat this again.  Keep on fighting...why not live forever?

Karl

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Yep Karl...that's a great plan...live forever. I have fish to catch and things to do...need to kick this crap to the curb and get on with life. Was glad to read you got to go home for a short stay. I sure hope things start looking up for you...what a ride you've been on! Hang in there buddy, and so will I.  Best wishes...Sue

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Dearest Sue,

I just popped on to check on you and found your post. This just stinks.

I know you will get through this next bump in the road of life, it's just going to be a bit of a challenge with your move and all. I'm glad that you are not moving across the country, just down a notch.

You know that I am here for you day and night. You have all my contact info, please feel free to call anytime you need an ear.

If you do need another BMB, make doubly  sure you have sedation... INSIST

I truly wish that this did not jump back into your life.

It's okay to be scared and upset and cry or yell or throw something, just don't aim at Steve.

I'm here and I know the rest of the group is here for you also.

One day at a time, one hour at a time, one minute at a time....

Biggest hugs and love,

Lisha

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Lisha,

 Right now I'm dealing with it all pretty good. I'll be taking you up on your offer when the nasty prednisone enters the picture! Yikes...you may wish I didn't have all of your contact numbers! Wink We are all packed and ready to move, and many friends and family to help make it happen. I already told my PCP today that if I need a BMB, he is to call my Oncologist and remind him about sedation. No way will I go through that again without it. I'll keep you posted. Have fun with the baby! Much love...Sue

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

:( I'm so sorry that you have to go through this again Sue! Cancer sucks big time...I agree with Lisha its ok to let out the anger or frustration some way...either crying or hitting something (not someone)!! Well, as for me I would totally drink a couple of beers or tequilas and maybe even smoke a dubby to get my nerves to settle down hehehe jk!!! We're all here for you sweet lady!!! Take care and keep us posted. Sending all my prayers and positive thoughts! (((HUGS))) Sincerely, Liz

Rocquie's picture
Rocquie
Posts: 857
Joined: Mar 2013

Dearest Sue. . .no, it isn't good. And so you will begin again. At least this time you won't be a "Newbie". 

I love your attitude of fighting and whatever it takes. Yes, you have too much to live for and too many fish in the pond river. 

We are all in this together!

I will be praying hard for you and following your tests and updates closely (whenever you feel like posting them).

Take care of yourself.

Much love and many big hugs,

Rocquie

 

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Thank you Rocquie,

  I was told from the beginning that my FNHL could ,and probably would come back. And...now it has. Boo! FrownBut...I am not willing to give in or give up, because that's just not how I do things. Right now I'm just trying to get my "Libra scales" balanced and not get too hyped out thinking about testing, treatment, moving, etc etc.Tongue Out I have to stay in the day. I will update as new stuff takes place. Love...Sue 

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

Sue,

Well I don't know what to say.  I am just heartbroken that this stupid disease has come back for you.  I was of course praying and just hoping that it wasn't lymphoma.  I am just so sorry that you have to go thru all of this again.

But - you can do this.  You know it and we all know it!  You are strong and you have spunk!  Plus you have fish to catch and a grandbaby to play with! 

I know you will keep us posted as things progress... and you know we are with you.  Every appointment, every stick, every CAT or PET - thru all of it just remember you have this group loving you thru it all. 

Big big hugs,

Donna

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Thanks so much ladies! Yes...I will give it my all and hope for the best.Things are moving very quickly, so at least I'm not doing the "hurry up and wait" routine. I'll keep everyone posted as soon as I know what the "plan" is. I love you both and appreciate your kind loving words.

Much love...Sue

Aaron's picture
Aaron
Posts: 239
Joined: Jun 2012

I'm sorry to hear this Sue, I have no doubt you will whip this thing as you have before.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Aaron,

  Yep...that's the plan, kick cancers a$$ and then live forever!Wink Hope things are going well with you. I'm loving this beautiful weather and it really helps with keeping my spirits lifted. Take care...Sue

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Look what happened when I drank red beer, Sue Cool.  Talk about "Hair of the dog!".

Thinking about you... Hugs

 

im laughing so hard animated GIF

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Too funny Jim! Laughing I haven't fixed a red beer yet, but plan to this weekend when our friends from the river come to visit. I can't figure out how to post pictures on the site since they did all of the changes.Frown Sue

Joemory21's picture
Joemory21
Posts: 41
Joined: Feb 2013

kick its *** then burn it with fire. hope you keep a smile on your face.

best of luck

jonathan

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Thanks Jonathan...I don't know about the fire part, but I'm forsure going to kick it's a$$. Smiles are easy...no pain involved, so that won't be a problem for me! SmileHope all is good with you.  Sue

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

I will echo everyone else with how sorry I am and add ............................YOU GOT THIS!! Love, Mary

PS: Feel free to message me anytime!

MChantal's picture
MChantal
Posts: 108
Joined: Apr 2013

Well, I am too at a loss for words Sue. This is such a bummer! I know I am late in response yet, I hope your spirits are still as high as they were on the 7th. I am sending you my strength Sue. You will overcome this little speed bump! We all know you will.

Best,

Michelle

ThisisLife's picture
ThisisLife
Posts: 101
Joined: Jul 2012

Sue, I'm sorry to hear about this.  A double whammy for you.

You have such a fabulous attitude.  I know that you can beat this beast again!  Sending you a big hug and lots of positive energy!

Sharlene

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Thanks ladies...

  This is just one of those things we have to deal with, so it's onward and upwards and I'm definetely not ready for heaven yet! Wink I'm hoping my CT Scan results come in the mail today, so that will give me a better idea if I'm going to have to deal with anything other than my eye and cheek. I'll keep you posted and thanks for caring. Have a Happy Easter.

Love Kiss Sue

Relapsed Follicular NHL April 2014

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

You have already been such an encouragment for me...and all along I didn't know you were having to be strong for yourself as well. You are on my prayer list. From reading your posts I can see you are an incredible person. You will overcome this.

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