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Finally, the attack plan is set!

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

We still don't have all the answers, but have gone ahead with the attack plan.

The colon cancer nurse navigator came down from the other office to be at my appointment with me. She is a real gem – a great source of information specific to colon cancer and treatments, and she knows her way around the lab, insurance companies, the doctors and more. I have her email, office number and pager. She always has time to explain things and give information. It is nice to have one person to go to with concerns who really seems to care, and knows how to get things done. The doctors are so busy that it I always get the feeling I’m bothering them. But Kim doesn’t give that impression at all.

Lynch Syndrome test (genetic) came back negative. Good news for my children!

PET scan showed high activity in a few lymph nodes in the upper abdomen, and moderate activity in the liver. The radiologist said the nodes were consistent with metastatic disease. It said the liver was inconclusive, could be metastasis or not, but MRI may provide more answers.

MRI scan showed that the area of question on the liver may be a hepatic hemangioma, but not certain. Another test with RBC can be done, but he chose not to do it. Hemangiomas have shown increased activities on PET scans in the past.

My oncologist feels strongly that the liver is fine - that the area in question is the same area the surgeon biopsied and that there is nothing malignant. He also feels strongly that the nodes are not cancerous, although he says he can’t promise me. They haven't really grown (.8 X 1.2cm), but are just showing signs of a little irritation - probably surgery trauma. They aren't large enough to biopsy, so the only way to know for certain is surgery. Why go through more surgery right now if it isn't necessary?

So we still don't really know if I am stage IIIc or stage IV. For now we assume I am III, and move forward with the plan. The KRAS test hasn't come back yet, and there is now a note on that one saying October 10. This would push me out 2 more weeks beyond when we planned to start chemo. (I have planned the weeks to work out with our alternating parenting schedule.) If I want to do the clinical trial we need to have the proof that it is wild KRAS. It mutated I'm disqualified. If it is wild, then I have a 50/50 chance of getting Erbitux or not. But even at that, my oncologist thinks they will disqualify me because if they look at my file, it is undetermined whether I am stage IIIc or IV. You have to be definitely a III to participate. So there is no point in waiting for these delayed results, with only a 50/50 shot at the drug that we don’t even know for sure helps stage III – and a good chance of not qualifying anyway.

We're moving forward with FOLFOX. I'd been hoping for XELOX, but my onc had people enrolled in clinical trials to determine effectiveness of FOLFOX vs XELOX. He says the very end results are really the same. But he had more trouble managing blood counts in those that did XELOX. He's had a lot more experience managing FOLFOX, and prefers me to do that. I gave in. I also made the decision to drive a little further to the office he is at on Thursdays to do my treatments then, instead of Fridays at the closer office. The other office is nicer anyway. It is new and quite impressive; the chemo chairs even have heat and massage in them. After asking many people how they did on FOLFOX, it seems that getting disconnected on Saturday and planning Sunday as a resting day should be better than getting disconnected Sunday and planning on getting through my usual Monday workload.

I’m going to get Decadrone and Aloxi via IV, and also magnesium and calcium, prior to the Oxaliplatin and Luecavorin, and magnesium and calcium on completion of the oxaliplatin. Then they’ll start the 5FU which I’ll return home with for 46 hours. I’m getting scripts for Zofran, Compazine and Activan so that I can try one and if it doesn’t work, try another. Due to my history of severe hyperemesis during pregnancy, we want to be very aggressive about heading off the nausea, and not letting the cycle of vomiting start. Home health care will come out to disconnect me on Saturday.

After two months on chemo we’ll rescan to check those nodes and the liver. If they are gone, we’ll never know if they were malignant or not – if from surgery they should heal by then. If cancer, the chemo could knock them out by then. If either one is still there, we’ll know the current chemo isn’t doing everything we need, and we’ll add to the arsenal, knowing I am stage IV.

I know this will seem very strange, but I am excited that we have a plan in place, and I’m ready to start chemo to make sure that if any cancer cells dared to stay behind in my body they will be annihilated now!

A huge weight has been lifted off my shoulders. I was still blabbering about it to my husband after I got home. I’m pretty sure he is sick of hearing about cancer, and treatment, and my struggling with the options. I think out loud a lot. I talk a lot. As with most men, I think he gets tired of hearing it. Tonight he blurted out something totally random about foggy windows, while I was explaining my starting chemo routine. When I called him on my way to my appointment to see if he was going to be done with work early enough to stop in too, he didn’t even remember I had an appointment with the oncologist, even though he was with me when it was made, and he’s listened to me talk about my appointment on Friday about 50 times by now. So this tells me he is tired of hearing about it. So now maybe I can just move forward and stop being on this one-track talking about the cancer and chemo and “what-ifs?” from test results, and quit boring him.

butterfly23's picture
butterfly23
Posts: 257
Joined: Mar 2008

I am very happy you have a plan to go by. I understand, when you said you felt "excited" to be starting up. I recently had to take a week off, because I had to have an angioplasty done and was in the hospital for a week, I actually asked the dr. if he could stick me in a Microwave while I was in the hosp. so I wouldn't skip radiation! Knowing the cancer in inside you, you want it out! As far as your husband goes, some people I know, they're husbands are right on top of everything and others not. I's sure he is very nervous, and also has alot on his mind and is worried for you. Everyone handles this differently, I talk to everyone about my illness, it' helps me. On the other hand, my husband has only told 1 person at work, he is very private, and does not like to discuss it with people. Everyone will handle it differently. But, we are ALL here for you, Questions, support and especially venting out!
Prayers are with you!
Karyn

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I hope the treatment works for you, and glad to hear you are exvited about killing this cancer, I only have 2 more treatments to go, and no clue what she's doing with me after. I'm sure some kind of maintenance therapy, though I want something more done with my liver.

I am sure your hubby is not bored with you talking about cancer, I bet he's scared, and just doesn't want to show it, and thinks talking about something else may get your mind off it as well, he loves you, and Karyn is right, everyone handles it differently. My hubby likes to encourage me about how this chemo is killing the bad cells, and so on, he seems to talk about it more then me, I try to forget about it sometimes, and talk about the normal things and plan ahead on things and such, but hubby is always "Let's wait and make sure you're not in the hospital"..he is so used to me being in the hospital all the time, I probably spent a total of 8 or 9 weeks this year in the hospital alone....he is scared each time I go.

Your doctor knows what he's doing, and I bet the FOLFOX will be just right for you. I been on FOLFIRI and haven't had OXY at all... OXY scares me alot. You're very brave, and hope it kills all those cells, including if there is any in the liver, and they can't see it, hopefully it's gone!

Good luck with it, we're here for you, you will be in my prayers!

Hugsss!
~Donna

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

I know what you mean about talking hubby's ear off.....I have been at this fight for 5 years and the poor man hears it all. I just finished xelox and lots of people here have done folfox so there should be plenty of help and support. I don't think it's unusual to be excited about "the plan" I always found the hardest times when there was no plan....once you find that path you can just get marching girl. You sound super prepared so that is good.....

Best of love
~mags~

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