And the winner is...

I heard from nurse Tracey this morning. My paperwork was submitted for participation in the Clinical Trial and I was drawn for the control group - which means I will not be receiving the additional chemo drug Cetuximab. That's the one that I mentioned in a previous blog titled "Freaked Out" cause um, I was freaked out about possible side effects...

So lets weigh the good and bad about this...

Bad

• The only bad I can think of is that should this drug end up being an effective preventative measure for recurring cancer, I will have missed out on taking it as a prevention drug (but it will still be available to treat recurring cancer, so... :o)

Good

• No rashy side effects on my face, neck and back!
• I will go in for treatment every other week instead of every week - already bringing my count of treatments down from 25 to 12!
• Being part of the control group means that I will be given the same chemo regimen that I would have received had I not signed up at all - but, since I am part of the study, one of the three drugs will be funded by the study! That is a huge financial consideration cause I'm told these drugs are pretty expensive.
• I'm still part of the study and will contribute to the findings that may affect a lot of people dealing with colon cancer in the future.

So really what I am trying to say is - I am okay with this.

Noticing the "good stuff" -
[x] Clinical Trials... a must if we're ever gonna cure cancer

Freaked Out

Okay, so I think my attitude towards this whole cancer business has been pretty good. Optimistic. Hopeful. Determined. And not because I am trying to put on a front for anyone, but because that is how I truly feel. Even through my first meeting with my Oncologist, Dr Azar on Wednesday. I re-listened to the short portion that we did record and was amazed at how calm and collected I sounded. And there was even a point in the meeting when my sister got a bit freaked out and I put my hand on her arm, patted her and told her "Don't worry, I'm gonna be okay."

But last night I was working on my journal and I was researching the Clinical Trial drug Cetuximab and I'm going to admit - it freaked me out a bit. As I mentioned, they really repeated that one of the side effects would be the rash on my face. I went ahead and took a look at some photos of people with this reaction - and wholly cow! It scared me. So I've been trying to tell myself that I really need to weigh the side effect with the possible gain - acne like rash/non-recurring cancer. hmmm... I know, not a tough choice huh? And I can say that right now, but realistically - three months from now, I might be tired. I might not feel well. And will looking at myself in the mirror be the straw that breaks the camel's back? I hope not.

Heck, I don't even know if I will be chosen as one of the participants that take the Cetuximab, so I know I just need to chill out - and I will. Point is, some things about this do freak me out...

Give it to me straight Doc...

Okay, Okay, Okay. Here's the big update. I wasn't trying to hold out on info - the doctor's appointment that started at 1:30pm lasted until 4:00pm! Yikes!

That being said, there was a lot of information. I had even bought a digital voice recorder so that I could re-listen to the conversation. Unfortunately, I didn't press the record button. That was truly disappointing. But Sheila was there and she took notes and we went out for ice cream afterwards to come up with a brief breakdown.

Here we go....

First decision - To chemo or not to chemo? No brainer right? I am going to have chemotherapy treatment. We ended the visit with the numbers, but I am going to note them here at the beginning because this is where I think they fit in.

My Final Pathologic Diagnosis reported at least AJCC Tumor Stage Grouping IIIB.
With this staging, percentages are

- without treatment, 64% cured within 5 years.
- with treatment, 85% cured within 5 years.

So one big answer is, my cancer is curable! yay! Point issued! However, there is a chance of new cancer, so I will continue to have checkups FOR-EV-ER to check for polyps. yay! ok, not really "yay", but you know...

Second decision - Participate in a Clinical Trial or not? If I had to choose right now, the answer would be yeah. But I have until Monday to decide, so.... nope, chances are still that I will say yeah. The deal is, if I decide to participate in the study, I would then be placed in a random drawing to decide which side of the study I would be on. One side would be treated 'standard' with the standard recommended chemo. Second side would be treated with the standard chemo plus another drug called Cetuximab. It's a 50/50 chance that I will end up on either side.

FYI -
Title of Clinical Trial: A Randomized Phase III Trial of Oxaliplatin (OXAL) Plus 5-Fluorouracil (5-FU) / Leucovorin (LV) With or Without Cetuximab (C225) After Curative Resection for Patients With Stage III Colon Cancer (N0147).
Shorthand: FOLFOX with C225 or FOLFOX without C225. much easier...
Note: "FOLFOX" is the short term for a standard treatment (with a combination of the 3 drugs oxaliplatin, leucovorin, and 5-fluorouracil).

Pros:

- Medication has already been FDA approved for treatment of recurring instances of colon cancer.
- It is not an experimental drug.
- Dr Azar seems to recommend it.

Cons:

- Side effects, especially a rash on face, chest and back. They were extremely clear that it would be almost a guarantee that I would experience some sort of reaction like this. So be prepared, I may be a pizza face for the rest of the year. Please be kind.
- Instead of getting treatment once every two weeks for six months, I would get treatment once a week for six months plus an extra week.
- Double copays. Does it really matter at this point?

What else about chemotherapy?

• I will be going back to the Franklin Offices on Monday to take a chemo class.
  
• Treatments will occur for 6 months starting May 1st.
• First week will be 4-6 hours, second week will be 2 hours and then weeks continue alternating. Second week will only be if I am chosen to be on that part of the clinical trial.
  
• The surgery department will contact me within the next week to schedule a visit to have a "port" attached right under my collar bone. This will be a permanent fixture for the entire time I am receiving chemotherapy and will enable me to have my IV's hooked up to it on my visits. The doctor told me that I shouldn't experience any of the pain I did with my IV's in the hospital.
  
• This port will also connect to a pump that I will be able to wear around (not sure how often) to receive part of my treatments. I am told the pump is about the size of a banana. Hmmm- a little lunch-box sized banana? A Chiquita sized banana? Or a big 'ol plantain sized banana?? Reminds me of when the doctor said the tumor was about the size of a bar of soap, yeah - a hotel bar of soap.
  
• It is unlikely that I will lose my hair, although it will thin out.
• It is likely to induce menopause.
• Symptoms are likely to get worse as treatment continues, but they should go away once I complete it.
• May be extremely tired
• Will have painful reactions to cold (food, drinks, weather - anything cold). Ugh...this sux to me!
• And many other side effects that I didn't write down... :o) ooops. I'll get more info in my chemo class. I plan to turn the recorder on this time!

Okay friends. I know this is a lot of information, but really - it's the condensed version. I am looking forward to seeing Sheila's notes on the meeting and to taking the chemo class.

How do I feel now?
I have to admit, I was blown away by the 6 month time-frame. I don't know why I was thinking somewhere more around the line of 6 weeks. But all in all, I am still really optimistic. And thank you so much for your continued support. I know it has everything to do with it.

Also - special thanks to my mom and dad, my sister Ruth, Mondo & Sheila W for sticking through the whole appointment! Love ya.