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Stage 3 now 4 officially

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

Hi everyone,
well I guess now it's official, I had the biopsy and i definitely have mets to my lungs. I felt so discouraged, I don't know why, I knew I had it but maybe being official like that made me feel worst. I give all of you so much credit with the bravery and grace that you have shown us all on the board. I was reading some back posts and have a question for everyone. The topic of antioxidants people posted about not using supplements during chemo, so seeing I'm going to be on chemo (as the dr says) for the rest of my life does that mean no supplements? What about juicing? Are all those fruits and veggies out also? I'm so afraid to be on chemo again, somehow medicine and me don't make good bedfellows. When I was on erbitux, I could have sworn my heart would skip a beat, my onc said that's normal, everyones does. They told me that I'll be on folfiri this time as they felt the folfox did not work. Do you think that being there were no tumors present when I did the folfox that it didn't work? My onc seems to think so.
Thank you for your response I appreciate it and I am grateful to have found this board with so many inspirational and informational people who not only understand but also have a great sense of humor and thanks for that!
Much love to you all,
Donna

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

HI Donna, I don't have much info to offer you, but I hope someone can give you info on the board.Want you to know that I am thinkng about you and wishing you all the best. Hang in there. Petrina

mom_2_3
Posts: 965
Joined: Nov 2008

My doctor game me the ok for a multi-vitamin as well as Vitamin D (D3 with calcium) during my chemo treatments. Everything else was "off limits" during my treatments. I was also given the go-ahead to juice as long as I was juicing within reason, that is juicing fruits and vegetables to get to my recommended daily allowance. I try and keep my juicing to about 7 servings per day.

I am sorry to hear that you have to go back on chemo but we are here with you. Keep up the good fight!!

Amy

rrob
Posts: 160
Joined: Nov 2007

Donna,

I just got CT results this week and am having a follow-up PET on Monday because it looks like I also have mets to my lungs. I am with you on the rollercoaster ride when I think about doing chemo again. It sounds like your doctor has recommended Folfiri. Has he also said that you'll be on this forever? My doctor is talking maintenance chemo as if that will be the case for me also. I have cried quite a bit over the last two days thinking about what is down the road. I know that I can do this because I've done it before. It's just hard. I'm so sorry you're having to face this, too. I will ask my oncologist about supplements, etc. I currently take Vitamin D, fish oil, and turmeric and I eat mostly organic with no red meats. Good luck in your journey. Be strong and fight hard.

Rebecca

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

thank you for your replies, I know I'm having a pity party for myself and I need to get off my butt and start living my life again. The way that my dr put it to me was if its mets to lungs they can prolong my life with chemo and that meant forever. I talked to my surgeon about removing the mets but one of my spots are really close to an artery, so he felt it wasnt an option right now. But, I have faith and hope, hearing about Miracles and trying my best to eat healthy, juice and walk a lot. I just got in a rut after my surgery, not feeling up to anything, sometimes I feel like staying in bed all day....... what a waste of time huh! I know my dr said no supplements while on chemo but did that mean food supplements also, it's so confusing when you read stuff on the internet, it's like do this and dont do that and eat this and dont eat that. I have cut out all sugar from my diet, eat a lot of macrobiotic stuff, no meat, no chicken, just fish here and there, I wish I could like the raw veggies as much as I like them cooked, it's hard for me to get used to. Well thanks for all you support and compassion....... I just love this site, I think my hubby thinks that I'm having an affair with someone! lol
donna

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

I'm a Donna also :)

I been on Folfiri with Avastin since February, I am to do 12 treatments, and on Wednesday it will be my 10th treatment, with just 2 more to go, but I have no idea what is in store for me after this. I get the pre-meds which is the anti-nausea meds first, I highly recommend Emend, and Dexamethasone, Zofran, Compazine, a little maryjane for the nausea big time. They didn't give me Emend the first time, and I tell ya, I was so sick, I was in bed for 4 days, no eating or drinking, I looked like death because the anti-nausea meds weren't working, and felt, if this was how chemo was, I knew I wouldn't be able to last. I told the nurses that week when they called for a follow-up, and they told me I wouldn't feel like that again, they would "bring out the big guns" and that was the Emend and Dexamethasone, since all they gave me for the first one was zofran and compazine, and ativan which didn't work by themselves.

You probably won't lose all your hair, but you will alot of thinning, I had long, thick hair, which fell out in clumps on the shower, it is now up to my shoulders, and very, very thin, but still covers my scalp, it is all actually starting to grow in now, I have these little hairs sticking straight up top, that make it look spikey, which, no matter how much hair spray I use, they won't stay down! lol!

I been hospitalized about 5 times with surgeries, including a temporary colostomy, due to blockages, obstructions and infections, so, make sure you go regularly, take alot of fiber, and stool softeners.

I did get mouth sores once, but the onc took the leucovorin away when she saw them, saying that was usually the cause of it, and haven't had mouth sores since.

I'm Stage 4 with mets to the liver, and she said my body has been responding well too the chemo, she was surprised how well I am doing, and told me I was in the small percentage of how fast and good the chemo was working, and a couple weeks ago on my CT Scan, she was glad to see how the liver tumors shrunk greatly, and it's going the way she wants it to go :)

So, you'll have your days...I get hooked up to a pump with 5fu for 46 hours, the infuaion itself takes a few hours for the Irontecan and the Avastin, and if I need potassium, blood or whatever, depending on what my blood looks like for that infusion, they supply what is lacking...I have a home health nurse come to my house on Friday, to unhook me from the pump, and the day after you may feel wiped out, like a truck hit you, very flusy, just really unenergetic, but don't worry, you will bounce back after about 4 days to yourself, only to have to go do it again that following week :)

But you can do it! if I can, you can!

Sorry so long, but if you have any other questions, just ask away! Hope I helped abit!

Hugsss!
~Donna

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

Hi Donna,
Thanks for all the info, I always read your posts, you are so upbeat and caring, I feel really lucky that everyone is so nice and helpful on this board. I was on the folfox treatment the last time and I remember too much of what it was like. Thanks for all the info and I will surely ask any questions I have. Love the hugs!
Donna

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