scheduled to start chemo, totally confused

jsabol said:

Hi R,
I'm sure this is the first of many responses you will get. I just read that getting the CANCER diagnosis is the hardest part of this; in some ways it seems true. I was diagnosed in Nov. 03, surgery Dec 03 (colectomy with 1 microscopically positive node, which had't shown on CT scan, nor did surgeon see it with naked eye). I started chemo 4 weeks later; my onc said usual is 3 to 7 weeks post op depending on healing, general health, etc.
Your appt with the onc will prob be a planning time; I took my husband and a notebook and wrote down the important stuff, as well writing down any questions I wanted answers to. I'm not sure what type of chemo you will need, but with 5FU and leucovorin, I am able to usually drive myself there and only had 1 episode of not being able to get home easily....BAD cramps and diarrhea.
Each person is different in their response to chemo agents, and as you learn more about your response, you can do a search of this board to review what others have said, or post your questions and others will chime in. I have learned more about managing my chemo and diet from this site than from my onc and nurses!
So....welcome to the club, humor is essential in this journey, but whining is allowed, too. Hope is knowing that you can manage whatever lies ahead; gather your supports and get ready!! Good thoughts coming your way, Judy

Welcome from "down under" rwkeach--as Judy says, we are all different with treatments/side effects.Even those on the same meds still have diff. effects.I would think that your onc. meeting will be for counselling and to determine your meds. / treatment etc. but in some cases chemo is started as soon as possible.
It would be good for you to tell us some of your cancer/ surgery details so we can make some judgements to help you out.
Of course this is personal and is your choice.
YES--YOU WILL FIND A LOT OF HUMOUR HERE--THAT IS NOT TO SAY WE ARE NOT WHINGERS, FAR FROM IT BUT IT IS OK TO HAVE A "CHUCKLE" OCCASSIONALLY--KEEPS GUYS LIKE SPONGEBOB N BUD ON THEIR TOES--HE HE!!!
Stay with us and we will all support you as we have all needed it in the past and in the present.
There can be many questions you can ask your oncologist and that is why it would be beneficial for us to know some of your details so we can assist you.
for example--my case
August 2003--bowel surgery--stage 2 cancer(AUSTRALIAN SYSTEM-cancer went thru wall of colon)high anterior resection--1/3 removed-unknown if lymph nodes affected--however lymph vessels/blood vessels compramised.
WWithin 8 weeks--chemo regime-5FU/Luecovorin-5days per week every 4 weeks for 6 months.
Do ask as many questions as you like here-I am relatively new here to and there is a wealth of info here---AND- you get a lot of love and hugs too!--big bonus!
luv nhugs--keep in touch
kangatoo n Jen
"under the southern cross"

pattieb said:

Welcme rwkeach to the semi colons network. One of the questions you should ask is about a port a cath this will save your veins. I didn't have one during my first treatment and do have one now what a big difference. No more tears when they are looking for a vein.
Keep us informed on how things are going.
Heres a big hug for you
Pattie

rwkeach, I am so glad you are reaching out to others who have had the same experience. Surley this trip to the oncologist is a planning appointment, so that your Chemo can be explained to you. I am sure you will start treatment shortly after that. The sooner you start treatment, the better. And I agree with pattieb, get a port if you can.It makes alot of difference.

Ahoy, rwkeach -

There is certainly pleanty of good advice here and I doubt I could add much value, but I do want to say - as someone who did the entire chemo thing by himself (my ex decided that two days after surgery would be a good time to serve me divorce papers) that having someone - anyone - there with you is important.

Listen to what the semi-colons have to say; they've all walked a mile in your shoes already and many of us have learned things the hard way. 5FU/Leucovorin is considered one of the more benign treatment regimes but everyone is different and you won't know how it will affect you until you're hooked-up.

I agree with all the advice about a porto-cath. I refused one and paid in pain.

I also agree with the good advice to write down a zillion questions to ask your onc when you meet with him. So often the clinical environment can make you tend to forget even the most poignant questions.

Is your husband an owner/operator or does he drive for a company? Is there any possibility of him taking local runs for the next six months or so so he can be there to help you out?

One last point - DRINK LOTS OF WATER! You will get the serious runs and may vomit which will dehydrate you. It's imperitive that you drink water and keep yourself hydrated. If you feel dizzy when you stand or sit up, that's a good indication that your fluids are way too low (think of it as the oil light coming in your car). Be sure to relate this to your onc so they can give you some IV fluids (it's nearly impossible to drink your way back to normal once you reach that point.

Glad you are getting some good info and enjoying our nonsence - we're a fun group from all around the world here and we look out for each other.

Best regards

- SpongeBob

spongebob said:

Ahoy, rwkeach -

There is certainly pleanty of good advice here and I doubt I could add much value, but I do want to say - as someone who did the entire chemo thing by himself (my ex decided that two days after surgery would be a good time to serve me divorce papers) that having someone - anyone - there with you is important.

Listen to what the semi-colons have to say; they've all walked a mile in your shoes already and many of us have learned things the hard way. 5FU/Leucovorin is considered one of the more benign treatment regimes but everyone is different and you won't know how it will affect you until you're hooked-up.

I agree with all the advice about a porto-cath. I refused one and paid in pain.

I also agree with the good advice to write down a zillion questions to ask your onc when you meet with him. So often the clinical environment can make you tend to forget even the most poignant questions.

Is your husband an owner/operator or does he drive for a company? Is there any possibility of him taking local runs for the next six months or so so he can be there to help you out?

One last point - DRINK LOTS OF WATER! You will get the serious runs and may vomit which will dehydrate you. It's imperitive that you drink water and keep yourself hydrated. If you feel dizzy when you stand or sit up, that's a good indication that your fluids are way too low (think of it as the oil light coming in your car). Be sure to relate this to your onc so they can give you some IV fluids (it's nearly impossible to drink your way back to normal once you reach that point.

Glad you are getting some good info and enjoying our nonsence - we're a fun group from all around the world here and we look out for each other.

Best regards

- SpongeBob

what a great analogy; everyone can relate to that one SB..ever consider becoming an MD? (no pun intended..) Bud

sricar said:

Welcome--you've come to the right place. There's alot of advice here, and a great deal of support. Know this--you are not alone.

First thing, scroll down to the message I posted approx. 3 weeks ago. There is wonderful advice there (much from some of the people who've already responded here) so you have a better idea of what to expect.

Second, carry a pad and pencil with you for a while. Whenever you think of a question write it down. That way you won't forget while you're looking for something to write with (learned that one the hard way). Try to bring a tape recorder with you to your first appointment so you don't have to worry about trying to write down the doctor's answers. Force your doctor to answer all of your questions. Then, bring your questions here. The people here have been through it, and tend to be more familiar with the reality than the doctors.

It is possible that you will start chemo with the first visit; my mom did. She also definitely needed a driver. If your husband can't do it, get in touch with the local hospital. They usually have some kind of service to help transport you from place to place. If they don't have one, call the local cancer society, hospice, etc. The resources are out there.

Finally, come back here often. You will find you're not alone, you'll find coping strategies, and studies have shown that those involved in support groups have a much higher survival rate.
Good luck!

Now that I've gotten into the CSN, I don't know how to post messages. I found yours and I
relate. Diagnosed 09/11/03. Operated on 10/28/03. Nearly died following surgery and no
oncologist would start chemo. The cancer was Stage IIIC. I start tommorrow, 03/03/04
with the Roswell Park 5FU and Leucovorin of 6 weeks on and 2 weeks off for 3 cycles.
All the doctors told me I'm starting much too late and that I'll probably die from it. Meanwhile
I'm waiting to find out if there's any spread elsewhere. I'm frightened and confused and
everyone I know who has had chemo has had terrible experiences. I already have
neuropathy and live with intense pain. I also have serious GI problems and am
malnourished because of them. The doctors tell you there are very mild side effects yet
everyone I've spoken with says they are severe. Who should I believe? What should I
expect? How do I cope with my fear and upset? I must go for treatments alone as there
is no one here who can take me. It means public transportation and after reading the other
posts I'm not sure I'll be well enough to do it. Talking is fine, but even my Church forgot
about me after I was sick for awhile and couldn't actively take part and contribute. Talking
doesn't seem to solve my problems. What can I do to help myself? Will I be able to help
myself or will I become totally incapcable of even dealing with everyday life?

Bravesoul said:

Ellagic Acid
Someone at a major hospital told me that research studies have proved that Ellagic Acid from raspberries and strawberries stops the spread of colon cancer and shrinks tumors. Does anyone know anything about this and where you can buy the acid? I understand that Katie Couric is also touting it through this foundation she set up following her husband Jay Monihan's death. If it's a known curative, why haven't I heard more?

i started taking it soon as i was diagnosed a month ago, bought it at the health food store. my doctor says it will not interfere with my chemo.