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
- 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 -What else about chemotherapy?
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.Cons:
- It is not an experimental drug.
- Dr Azar seems to recommend it.- 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?
- 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!
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.