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5 Replies Last post: Oct 22, 2009 8:47 PM by kgirl  
Patti   70 posts since
Sep 14, 2009
Currently Being Moderated

Sep 14, 2009 12:40 PM

I have just been diagnosed with follicular lymphoma I have questions!

Hi,

I have had a bone marrow biospy, CT Scan and now I am going back Wed to talk to the Dr about what to do next. He had told me before the CT scan that I was in Stage 4 but he tells me he wants to do the watch and wait.  Does this make sense to anyone?? He says the CT scan shows some in the nodes in my chest but they are small.. I am scared!

Tex   3,888 posts since
Apr 3, 2009
Currently Being Moderated
1. Sep 14, 2009 1:32 PM in response to: Patti
Re: I have just been diagnosed with follicular lymphoma I have questions!

Hi Patti,

 

I had leukemia so can't advise on any kind of lymphoma.  Just wanted to let you know there's a forum for non-Hodgkin lymphoma here and you can make some contacts there.

 

Just click on the "Living with..." link and you'll see a menu of various diseases.  Click on the one that works for you.

 

You'll get some responses here on this forum.  Just didn't want to leave you hanging.  Best wishes fighting this crap.

 

Blessings

BOSTONPARK   43 posts since
Aug 19, 2009
Currently Being Moderated
2. Sep 17, 2009 9:25 AM in response to: Patti
Re: I have just been diagnosed with follicular lymphoma I have questions!

Hi Patti,

Welcome to the club that no one wants to belong to.  I have the same thing you do in stage 4.  I was diagnosed 8-4-09 so I am pretty new myself.  I am learning a lot through these blogs.  What you were referring to was the "Watch and Wait" which is a legitimate approach.  I discussed this with my doctor and she said that wether you start chemo now or later is still works out.  My non-hodgkin's lymphoma is what they call indolent type which I think means slow growing.  If yours is also, ask your oncologist if the type can change while waiting.  They elected to proceed with my chemo and I have finished 2 of 6 rounds.  Everything is going well.

I'm guessing for your own piece of mind a second opinion would be a good idea.  Some insurances require a second opinion.

I'm sure your in good hands.  Hang in there.  Stay in touch with your blogging and asking questions.

God bless,

Ray

annerachell   4 posts since
Oct 10, 2009
Currently Being Moderated
4. Oct 20, 2009 10:00 PM in response to: Patti
Re: I have just been diagnosed with follicular lymphoma I have questions!

Hi i too have been diagnosed with stage IV indolent follicular lymphoma. I see the dr on 11/2 to see what the next step is. He said there is a range... I hope he gives me his recommendation as well.

i am also getting a second opinion at Sloane Kettering.

I am both afraid they will say watch and wait and yet afraid that they will not...

kgirl   240 posts since
Aug 16, 2009
Currently Being Moderated
5. Oct 22, 2009 8:47 PM in response to: Patti
Re: I have just been diagnosed with follicular lymphoma I have questions!

Hi Patti.  Which direction have you and your doctor decided to go??  How are you coping?  Haven't seen any posts in awhile and just want you to know there are a lot of people who have gone through

some of the same minefields, and are more than willing to help as much as possible.

Kgirl

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