Thursday, January 15, 2009 8:14 PM, CST

Hi there,
Sit down, buckle up and hold on to the safety bar. You’re on this ride with me and if you’re new to it, you’re going to want to know RIGHT NOW that it’s a roller coaster and we don’t know when the ride will be over. And it might as well be a roller coaster in the dark because we can’t see how big the hills are or when the twists and turns are coming. I, myself, am not a big fan of roller coasters but I have no choice. I never asked for this ride, but I’m on until the bitter end.
Nothing about my case has been straightforward since I went to the doctor with my cough on January 19, 2007. And my story could be on the verge of taking yet another strange twist.
Here goes:
We got to clinic this morning for week one of my current round. Greg left to get coffee and came back quickly to hand me the results of the CT scan and said, “Dr. Walsh is very pleased with the results of the CT scan. It shows more promising information than the PET scan.”
My nurse Faith comes into the infusion room and explains that the tiny nodules (ewww I forgot how much I hate that word. Freckles, I have to remember to call them freckles) have all but disappeared. The mediastinal nodules look good. As a reminder, the mediastinum is the area right behind the breast bone. As a matter of fact, the CT scan report says, “Mediastinal windows show no significant adenopathy.”
You might be thinking what is adenopathy? I looked it up (I mean c’mon would I leave you hanging without trying to explain it?) and it’s just a fancy word for swelling. I just smiled when I wrote that because my Lauren LOVES the character Fancy Nancy and Fancy Nancy always uses fancy words for simple terms and feels the need to tell you it’s a fancy word. Fancy Nancy loves everything fancy—especially words.
Anyway…
The main tumor still looks enlarged. However, the question has become: Is the tumor enlarged because of cancer or is there pneumonitis around the tumor causing it to appear larger? Fancy Nancy would love to tell you that pneumonitis is a fancy word for swelling in the lungs due to a virus or irritation. J
I forgot to mention the other day that I have had laryngitis since the beginning of November. When Dr. Walsh met with us the other day, he surmised that the tumors in the mediastinum were enlarging and pinching the nerve to my larynx and therefore paralyzing my voice box. My husky voice may be permanent.
Let me also add that I took some Motrin when we got home on Monday because I had a severe headache. The Motrin took away not only the headache but it also took away my cough and helped my voice sound a little better.
Back to today….
We meet with Dr. Walsh late in the day.
Now, it’s about to get very confusing. So you might need to read this a few times and please feel free to ask me any questions. I’m going to attempt to be as straightforward as I can.
Come to find out my main tumor is gone and the tumors in my mediastinum are gone. For some reason this is news to us. The CT scan shows that the freckles in my lungs look a lot better.
However, Dr. Walsh does not have any definitive answers for me because he is looking at a PET scan that makes my situation look mildly worse and a CT scan that makes things look mildly improved.
He reiterated that the PET scan shows increased activity in the area—the AREA-where my main tumor used to be, which is the upper right hand lobe of my lung.
There are no other areas of hypermetabolic activity (the PET scan shows hypermetabolic activity because tumors have hypermetabolic activity). Just to remind you: my freckles never showed hypermetabolic activity because they are either too small to register any or they’re not cancer. And because we never did a biopsy, we still do not definitively know what they are.
A biopsy is still something that we should consider. However, this is not a clear cut decision because I have to suspend Avastin in order to have the biopsy.
The Avastin should be boosting the efficacy of the Irinotecan and the Cetuximab. However, it makes me susceptible to severe bleeding. I have been off the Avastin for six weeks due to my natural chemo cycle combined with the few weeks I took off for the Holidays. However, I would need to remain off the Avastin for a few weeks after the biopsy as well. The best time to do the biopsy would be next week or I will have to wait several weeks until it’s safe to do a biopsy.
So should I? Or shouldn’t I?
On Monday, Dr. Walsh said he would do two more rounds of chemo and order some scans when I’m done, which would be twelve weeks from now-the beginning of April
Today, Dr. Walsh said he would do a PET scan and a CT scan in just a few weeks from today—perhaps anywhere from January 28 through February 4th. He would do this in order to see if the chemo is working as well as the CT scan shows rather than waiting 12 weeks.
Why such a discrepancy in the two tests? The PET scan I had last week was compared to my latest PET scan done in early August. The CT scan I had on Tuesday was compared to my latest CT scan done in September.
I had no chemo from the beginning of August until the start of this new protocol in October. And I did not have another PET scan done between those two times.
Therefore, there is a possibility that the disease worsened in the weeks between the August PET scan and the commencement of chemo in October. Ergo, the PET scan in January APPEARS to show progressive disease because there was not another PET scan done immediately prior to the start of chemo.
Does that make sense?
The other possibility to consider is that I’m fighting some sort of fungal disease or tuberculosis. Infections will show a hypermetabolic rate on a PET scan as well. However, Dr. Walsh thinks I would be “sick as a dog” if I had some sort of infection. I think I WAS “sick as a dog” back in October.
So today I suggest that just for kicks and giggles, he put me on an antibiotic to see how that affects the cough, the laryngitis and my overall health. I mean what can it hurt? They’re already pumping me full of poison, what’s a little antibiotic going to do?
Dr. Walsh agrees to give it a try especially when I tell him that my cough and my laryngitis improve when I take Motrin.
He is also presenting me at a meeting tomorrow with lung cancer experts (even though he is still pretty sure it’s colon cancer in the lungs vs. a true lung cancer), oncologists, thoracic surgeons, and doctors from nuclear medicine (these are the guys that interpret the PET scans). Dr. Walsh wants to hear what they have to say and what they recommend. He will be in touch with us late tomorrow or early on Saturday.
Dr Walsh also thinks he was concerned with my health based on my appearance and my laryngitis. I said to Greg, “See Dr. Walsh thinks my hair looks horrible.” Greg said, “That’s not what he said.” And Dr. Walsh piped in and said, “Oh, ummm, she’s not entirely wrong there.” He then informed me that a salon could surely buzz the rest of my hair off. Hmmm…I guess he really doesn’t like how I look!
So the decision that I need to make is: Do I have a biopsy and risk losing out on a few weeks of Avastin or do I go ahead and have some more chemo and see what scans in a few weeks show?
What do we know?
ü That the cancer could be back based on the growth of these freckles in my lungs.
ü If these freckles are cancer they’re not returning the way a normal cancer would return.
ü These nodules are getting considerably smaller.
ü I have heightened hypermetabolic activity in the upper right lobe of my lung
ü The PET scan could be showing us some false information
ü We could be looking at some sort of funky fungus or TB
ü I can have a biopsy if I chose
ü I need to be OFF the Avastin in order to have the biopsy
ü I need to be ON the Avastin to enhance the efficacy of the Irinotecan and the Cetuximab
ü I was very sick in October
ü My cough and laryngitis improve when I take Motrin
ü My case has not been normal since the beginning
ü Dr. Walsh thinks my hair looks horrible
Speaking of my hair, I ordered a wig the other day. It’s coming in on Saturday. It’s 100% natural hair. They took a sample of mine and will try to match my color exactly. The wig is long and all one length like mine. Well, like my hair used to be. And if I don’t like exactly how it looks, I can have it styled right at the wig salon. For example, my stylist recommended I have long bangs cut into my wig so I don’t have to worry about matching an exact hair line. And the hair at the bottom of the wig flips up and I’m not sure I’m going to like it. But it can be cut into something I like a little better.
A new head of hair will make me feel so much better and I can’t wait to get it!!
I have some decisions to make and I will keep you posted. I hope you’re enjoying the ride!!!
Love,
Kim