Hello Everybody! Newbie with some questions,help!

evyenia · July 2005

I am in remission from Non-Hodgkins Lymphoma and just recently my Mom was diagnosed with somewhat early stage colon cancer and had a large tumor removed. She will begin FOLFOX Tx July 15 for six months and I am wondering how bad it is. My chemo tx was very rough. I am wondering how much care she will need and how the cycles go. She will have two days infusions every two weeks.Any info would be greatly appreciated!
Evyenia

bsrules · July 2005

Welcome Evyenia,

Sorry that you have to be here but you have come to the right place for info. The people here are GREAT!!!!
I was a caregiver for my husband Bob who unfortunely lost his battle this past Christmas Eve. What I can tell you is that everyone handles the chemo regiment differently. Some do very well tolerateing and some do not. Unfortunately, you will have to see how your mom does one treatment at a time. I'm glad that she is in the early stage!!!! My husband was diagnosised in the later stage of stage IV. His liver was 60% involved when they found it. He gave it all he had but the Monster won in his case. There are alot of people here who have best this and are doing well!!!!

Don't worry if the replies are slow in coming this weekend as it is the 4th.We have alot of partiers here to say the least!!!! The replies will be there!!!!

Come and visit us anytime whether it is to vent or get info or just to keep us updated on how things are going!!!

Best Wishes and Prayers!!!

Sue

kangatoo · July 2005

bsrules said:
Welcome Evyenia,

Sorry that you have to be here but you have come to the right place for info. The people here are GREAT!!!!
I was a caregiver for my husband Bob who unfortunely lost his battle this past Christmas Eve. What I can tell you is that everyone handles the chemo regiment differently. Some do very well tolerateing and some do not. Unfortunately, you will have to see how your mom does one treatment at a time. I'm glad that she is in the early stage!!!! My husband was diagnosised in the later stage of stage IV. His liver was 60% involved when they found it. He gave it all he had but the Monster won in his case. There are alot of people here who have best this and are doing well!!!!

Don't worry if the replies are slow in coming this weekend as it is the 4th.We have alot of partiers here to say the least!!!! The replies will be there!!!!

Come and visit us anytime whether it is to vent or get info or just to keep us updated on how things are going!!!

Best Wishes and Prayers!!!

Sue

Sad to see this monster has brought you here.....but oh what a blessing that you have found us. I think you will find the answers you need here....I cannot comment on Folfox tho. Others will help you out there. Make sure that your mum keeps a good eye on anything unusual that happens during the course of chemo. She must tell her onc. /clinic nurses of anything out of the ordinary. Reactions differ greatly for us all and it is important to keep check of them to allow the "poison....crappy stuff!) to work with as few side effects as possible.
Jen and I hope that you both an help each other to overcome this horrid thing.
huggs, kanga n Jen

evyenia · July 2005

kangatoo said:
Sad to see this monster has brought you here.....but oh what a blessing that you have found us. I think you will find the answers you need here....I cannot comment on Folfox tho. Others will help you out there. Make sure that your mum keeps a good eye on anything unusual that happens during the course of chemo. She must tell her onc. /clinic nurses of anything out of the ordinary. Reactions differ greatly for us all and it is important to keep check of them to allow the "poison....crappy stuff!) to work with as few side effects as possible.
Jen and I hope that you both an help each other to overcome this horrid thing.
huggs, kanga n Jen

Thanks Jen, n Kanga, and Sue for such a quick reply. I needed to connect with somebody about this. It is strange being on the other side, a caregiver this time. I worry so much more than i did about myself! Hope everybody has a great 4th and I'll be peeking around the boards.
Peace,
evyenia

LindaJean · July 2005

You have come to the right place for feedback. You didn't say how old your Mom is or if there were any lymph nodes positive? I am 52 and had a tumor removed a year ago March, started folfox a year ago May with treatments every other week. I worked throughout treatments missed a few hours here and there and had very few side effects. I received medication for nausea, a little constipation-others here have had opposite effects, sensitivity to cold as they had instructed. So far so good on my end, plenty of energy now, feelng great, just taking it a day at a time. Let us know if you have any other questions!

Glv49 · July 2005

Hi, and welcome to the site, its great! Sorry to hear about your Mom, I was diagnosed in 2003 StageIV with 1 lymph node involved. I was 48 years old, and never sick a day in my life, the only time I was ever in the hospital was to have my two children. Anyway, I had the folfox regimine, 6 wks of continuous treatment thru a pump that I wore 24/7. At the same time I also had radiation every day. Then I had 5 mos. of 5Fu, leukovorin, and oxilaplatin. I had it 48 hrs continuously every 2 wks. I never lost my hair, Thank God. It just got a little thin, and I never really got sick, either, I guess I am blessed. I had surgery, and a colostomy bag for 18 mos. But, I have been in remission since April 2004, and had my bag reversed this past Jan. So for me it worked and the side effects weren't very bad, compared to what I have heard here. So good luck to your Mom, stay strong for her and be her support, she will make it.
Gail

jana11 · July 2005

Hi.. welcome. For a point of reference; the chemo drugs for lymphoma are much worse than the CRC drugs. Everyone reacts differently though. Hopefully your mom will fly through the treatments. I did xeloda, CPT 11, and oxaliplatin (at two different times) and worked full time. They make you tired and I was very anemic, but lived my life and enjoyed myself.

I wish you and your mom all the best. You will be such a wonderful care giver for her. Be well. jana

CAMaura · July 2005

Hi there, and welcome!

I agree that everyone seems to have a different experience with chemo. But do feel free to ask about any side effects which might occur. Chances are, someone will be able to chime in with good info and advice for you.
Have a great holiday and best of luck.
Cheers,
Maura

taraHK · July 2005

Hi Evyenia,
I am on FOLFOX now -- sounds like the same regime as your mother (a 2 day infusion every other week). I have finished my 2nd cycle -- the goal is 12 (6 months). I would be happy to keep in touch as we go through this together! So far, my symptoms have not been too bad. Mild nausea, a bit of fatigue, some constipation (from the anti-nausea medication?). As you have probably heard, the oxaliplatin often results in "pins and needles" sensation in hands, feet and sometimes mouth, and one should avoid touching or eating cold things. But, I haven't experienced this yet. I have had a mild jaw spasm (lasts a few seconds, whenever I eat or drink -- but only for a few days after the chemo), and swollen lips (also lasts just a few days). I know there may be a cumulative effect ie might get tougher in the later cycles. But, so far, not too bad! As others have said, there is a lot of individual variation re how we react to chemo.
All the best!
Tara

spongebob · July 2005

Hi, Evyenia -

Welcome. Gotta warn you, we're a chatty bunch. I didn't do FOLFOX, so I don't have any good advice for you, but I wanted to say welcome!

Keeping you and your mom in my prayers

- SpongeBob

tkd3g · July 2005

Hi Evyenia,

Congrats on your remission. Sorry mom has to join us as a Semi-Colon, but happy to have her ( and you, too)

I was DX stage 3 rectal, chemoradiation ( 6 weeks), surgery, then 6 months chemo.

My post surgical chemo was the same as your mom's. Unfortunately, I was one of those who couldn't tolerate it. I did 3 or 4 treatments ( I can't believe I can't remember), but had to stop. The side effects were getting worse with each treatment and just too much for my body.

I switched back to the old standby 5FU and Leukovorin. So far I'm 1 year cancer free.

Please don't be discouraged by my experience with the Oxy. Many here have done very well with it.

Keep us posted on how mom AND YOU are doing.

Barb ( who has apparently been labled the resident "dirty mouth") Hmmm. how did that happen?

rejoyous · July 2005

Hello and welcome!

I'm so sorry to hear your mother's news, but it is a really good thing that they found her tumor early. I was diagnosed stage 3 last summer and did six months of FOLFOX with a day in the hospital followed by 2 days of infusion via fanny pack. People seem to have quite different responses, as others have already commented. It wasn't so bad for me.

Some things that made a difference:
l. Great caregivers!!!! (I'm certain that your mother is already feeling lucky to have you in her corner.)

2. I tried to keep exercising. For me this meant walking at least every other day for about an hour. It often wasn't what I wanted to do, but it always made me feel better.

3. I used "hot hands' handwarmers during the winter months to keep the cold at bay.

4. I was scrupulously careful to keep my mouth clean and had mouth sores only once--after I had a sip of wine!

5. Take it all one day, one minute at a time. Stay grateful for everything that you have, for just being alive right now.

Good luck. Keep us posted on how your mom is doing.

Hello Everybody! Newbie with some questions,help!

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