My first visit with the oncologist (m)

[lorbethm]

Well, it was a surprising visit in a way. She immediately latched on to the fact that my appendix had ruptured in August and we didn't know why or if it came back "clean" in the pathology report. Carcinoid usually starts in the gut, so she thinks it's very possible my lung tumors were secondary to tumors in the appendix. I had the option on taking chemo, but with the possibility that it has metastisized, I didn't feel I really had an option. I will start chemo in approximately three weeks. I have to get a specific kind of scan first (can't remember the name of it and my notes aren't right here, but it starts with an "o") and then I can start the chemo. She wants me to gain weight first. I'm down to 92 pounds and I'm 5'7". I lost most of the weight in August, but I'm only normally 116. So I will be drinking lots of protein shakes over the next two weeks. Fun. I am going to be able to get all my chemo done at home instead of having to fly down to Houston. I am very thankful for that. I will be taking four treatments and each treatment is 3 days.

This is not the step I wanted. I am scared to death of chemo, but I feel I have no choice. I can't risk the fact that it "could" have been in my appendix. So, here we go.

Thanks for the encouragement.

Lorie

[paul verdon]

Michael and I were also scared to death with the news of cancer, the chemo treatments, etc. Our Dr. was very nice and said the chemo will be anti climactic when you get it, and it was. Michael never lost his appetite (he gained a couple of pounds), never got nauseous and at the most he got fatgued. He was on Carbo and Taxel.

Ask your doctor about Decadron, Kytril, Zantac, and Benadryl as preventative drugs for side effects of chemo. Michael did really good becasue of these.

[RandyW]

besides shakes if you like smoothies they are great with Regular milk and such. IF you lik eto make your own soups use Heavy cream recipes also. And lots of Ice cream is also good if you like that option. Keep us posted and let us know how things are going.

[ernrol]

Lorie,

I think you made the right choice with the chemo, but the scan may show that it is not cancer. You may have no trouble with chemo, I never have. One of my favorites to add weight was an English muffin with lots of Organic Almond Butter and a little natural jelly. Almond Butter is a lot better for you than Peanut Butter.

Stay positive,

Ernie

[lorbethm]

Thank you so much for your encouragement. I will be taking Etoposide and Cisplatin for chemo. She also ordered Ondanesetron and Dexamethasone for the first day. I'm assuming those are anti-nausea drugs? I do three days of infusions that will last around 6 hours each day, then I rest for 3 weeks. I have to do four rounds of this. Has anyone done this particular treatment? Success? Side effects? I'm most worried about the side effects. I know I'll lose my hair and I'm already preparing my kids for that. They think it's a hoot that both of their parents will be bald. LOL My husband already shaves his head every day. I teased him when we were at MD Anderson that HE looked like the cancer patient, not me. Except he has very hairy eyebrows. Hey, we have to laugh about something in this journey!

I have to get a baseline octreotride scan before I start the chemo, too. It will be negative for now because we know the cancer is currently not in tumor format anywhere thanks to the PET I had before surgery. My oncologist seems to be pretty aggressive considering this is a "slow growing" cancer. I will be getting scans done every 3 months for the first two years, then every 4-6 months for years 3 and 4 and then once a year starting in year 5. I was very surprised with how often I have to have the scans. They think my lung tumors had been there for probably four years.

Thanks for the help and encouragement. If I don't get answers here, I'll repost in a separate post. Thank you so much!!!

Lorie

[Don M]

Good luck with your treatment Lorie.

Don M

[LolasDaughter]

Hi Lorie -

First of all, welcome! I wanted to share with you that my mom is taking the cisplatin/etoposide combo and is doing very well with it. I believe the Dexamethasone you mention is Decadron, which my mom gets as well. She's been surprised at how good her appetite is! She's keeping much of her same routine, with a nap added in pretty much every day as she does get tired. Other than that and a few days of diarhea, she's handling the chemo very well.

For her treatments, Mom gets both the first day and then just the etoposide days 2 and 3. So, the first day of the round is the longest. She has completed one round and her next round starts 12/3 (see below).

Regarding the drugs, there's a great link under the 'Treatment and Rx Info' board - it's a sticky called Drug Info or something similar. It's great info on side effects, etc., and what the exact use of each drug is.

Keep us posted on how things go for you and wishes for successful treatment,

Nicole

[fillise]

Lorie,

Good luck with your treatment. You've gotten good advice on the chemo, so just remember to take good care of yourself and try to keep your weight up.

Susan