Living With CLL: Christina’s Diagnosis Story

Living With CLL: Christina’s Diagnosis Story from Patient Empowerment Network on Vimeo.

After chasing a diagnosis for almost a year, Christina Fisher shares how she was finally diagnosed and how she lives well with CLL.


Transcript:

Andrew Schorr:

Andrew Schorr with Patient Power here with Christina Fisher from near Portland, Oregon, diagnosed in 2013 in an odd way with a consultation with an ENT specialist who did a biopsy basically or an excision of your swollen lymph node, and then it turned out to be CLL.  Shocker, right?

 

Christina Fisher:

Yes.

 

Andrew Schorr:

Okay.  And so that had you go on a journey to different oncologists and ultimately CLL specialist, and so you’re doing well now with some of the latest medicines, in your case venetoclax, Venclexta, with Rituxan and delivered with Rituxan (?) high cell as kind of a quick infusion.  How are you doing?  Are you doing well?

 

Christina Fisher:

I’m doing well.  It’s been a little bit bumpy over the holidays for the last four months or so, but I’m emerging, feeling well.  Thank you.

 

Andrew Schorr:

Okay.  But it was also bumpy in getting to a diagnosis, getting to the right specialist, right? and knowledgeable team, so what is the lesson for people to be their own advocate?

 

Christina Fisher:

Be dogged in your determination.  Do not give up.  Be your own advocate.  Do your research.  Have your questions ready ahead of time.  Just don’t give up.  I had so many obstacles trying to arrive at a diagnosis, and the frustration was insurmountable, but I didn’t give up.  I knew something was wrong.

 

Andrew Schorr:

Being in your mid‑40s and having weird symptoms when CLL is often a disease of people older, your doctors were saying, oh, you’re fine.  I mean, the idea of leukemia never came up early on, right?

 

Christina Fisher:

My primary care physician was flip about it and had actually made several comments such as you are way too fit to have cancer, your blood isn’t displaying anything in particular, almost to the point where he made me feel like a hypochondriac.  But I had a large lymph node swollen over my collar bone that would not recede, and I went through a year of asking him for a biopsy, asking him for further tests, to the point of tears in frustration, and I received no answers.

 

Andrew Schorr:

And it was ENT specialist, a different doctor, who finally said, let’s take a look at that lymph node.  That’s what led to the pathology report, and that’s when‑‑you got a call a couple of days later.  Tell us about that.

 

Christina Fisher:

Well, initially my eyes had swelled shut.  I went to an ophthalmologist who was roommates with the ENT, and it turned out that their other roommate had removed my swollen gallbladder as well.  They started talking about me.  And so they sent me to the ENT, and she was extremely efficient and tuned in, and she saw the lymph node over my collar bone, and she had done other things that ENTs do during the exam but ultimately stated that something else is wrong with you.  Do you have a moment?  Let’s step into the surgery room and we’re going to extract a lymph node right now.

 

So that caught me off guard, but I was game.  And she removed a small lymph node from my neck and said it will be about a week to do the pathology, but, yes, called me in two days.

 

Andrew Schorr:

And said, what do you think you have?

 

Christina Fisher:

She said, what do you think you have?  And I‑‑she said, you know you’re sick.  What do you think you have?  And I said, I think I have leukemia or a form of it.  And she said, you’re right.  Would you like to sit down and talk about it?  So it was kind of hard to hang onto the phone at that moment, but I wanted to know what kind it was.

 

Andrew Schorr:

Now, Christina, you found your way to a CLL researcher.

 

Christina Fisher:

I did.

 

Andrew Schorr:

Specialist.  So what is your advice to people when we know there’s this whole changing world of treatments and combination therapies and clinical trials.  You’ve been in some clinical trials.  What would you say to patients about at least getting a consultation with a CLL specialist?

 

Christina Fisher:

You must.  You must seek out a consultation with a specialist.  It is up to you as a patient to seek one out and obtain that appointment.  No one is going to come to you and say, hey, maybe you should make an appointment or I’m going to give you a referral.  You need to make that appointment and see a specialist that you’re comfortable with.  And if your personality or maybe the information doesn’t quite deliver in a manner that you prefer, find another one.  There are many in the country now for CLL, and I was fortunate enough to be accepted into a program at OHSU where‑‑

 

Andrew Schorr:

Oregon Health & Science University.

 

Christina Fisher:

Yes.

 

Andrew Schorr:

Okay.  So you’ve gone from having your eyes swollen and shut and a big lymph node on the side of your neck, and at one point I think even being weak and being in a wheelchair to doing well.

 

Christina Fisher:

Yes.

 

Andrew Schorr:

So what’s your outlook for the future?

 

Christina Fisher:

Well, I feel like I’ve been released from a cage recently, and that’s something that I’m considering, and so my husband says he knows I’m doing better when I nag more, and, believe me, I’ve been nagging.  So I’m feeling so much better just recently, and I feel like that I have hope for life.  I have hope for a future.  I have hope that there’s just a chronic condition or a cure.  I feel fantastic right now, and so I’m looking forward to a very active summer, definitely.

 

Andrew Schorr:

Good for you.  Christina Fisher, wish you the best, continued better health, and I’m glad you have the right team working with you now, and thanks for speaking up and telling others to speak up.

 

Christina Fisher:

Thank you, Andrew.

 

Andrew Schorr:

Okay.  Andrew Schorr, and you can see personal advocacy and knowledge can be the best medicine of all.