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scheduled to start chemo, totally confused

rwkeach
Posts: 17
Joined: Feb 2004

Hi, I'm new to this, so bear with me.
Got diagnosed on 1-30-04, had surgery on 2-6-04 and am scheduled to start chemo on 2-25-04. At least I have an appointment with the oncologist on that date. People tell me it's too early to start chemo, of course i don't know what to expect. I would like to hear from some of you that can tell me what questions to ask etc. Do I need somebody to go with me or am I ok going by myself (my husband is an OTR driver and will be gone for most of the time). I read some of the emails and it wasn't at all what I expected. I thought everybody would be whining about the raw deal they got, instead I'm reading some incredible stories of courage and also some wonderful nonsense. If anybody out there has any advice for me, I would certainly appreciate it.
Thanks

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

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

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

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
Posts: 176
Joined: Mar 2003

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

QUEENFISH
Posts: 12
Joined: Feb 2004

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.

Mich28
Posts: 9
Joined: Feb 2004

rwkeach, this visit might be just to explain what chemo you are going to start and how long you'll be on but you should call his office and ask if you are going to be treated the same day. I was and I was happy I had someone come with me because I felt sick and had to have them stop at least six times before we got home and we only live thirty miles away. I would defenatly call and ask.Good luck and hope your chemo goes well...keep us posted.

Michelle

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

rwkeach, hang in there. By all means, ask about getting a medi-port installed. It is (in my opinion) the best way to receive the chemo. Everyone has different side effects, but most everyone has the dreaded diahrrea and nausea but the doc can give you some meds to help with that. Keep us posted, everyone is here to help, listen, laugh, cry and pray with you. Kerry

bryancarson's picture
bryancarson
Posts: 47
Joined: Jan 2004

You have now started a long, un-asked-for road of learning, patience, and personal growth. I was diagnosed, had surgery, and on my first visit to the oncologist, 4 weeks after surgery, I had my first dose of chemo. I think every onc does it differently. The one question that compelled me to reply to you was, "should I bring someone?" YES! My mind was so overwhelmed and preoccupied that I wasn't thinking straight enough to even ask a intelligent question. My mom is a nurse, so I brought her. She asked the right questions and wouldn't relent from the doctor until she gave her a straigh forward answer, then wrote it down. You are going to do great through all of this, remember to let others take care of you, even if you don't want them to be near you or see you in moments of weakness.

Bryan

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

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

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

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

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi RW

Welcome to our board of semi colons. When you enter this room beware of hijinks and hilarity especially with SpongeBob and Kanga at the helm. And if you don't whine once in a while we'll wonder if you're for real....haha.

My first appt with my onc was just to explain the course of action he would take. I went equipped with written questions in a notebook that I kept. He also did a post op exam of vitals and such.

I was Stage 3 lymph positive colon (sigmoid) and had about 13 inches removed with a good margin. I was fortunate to not have a bag when I woke up.

Because I was lymph positive my onc wanted to do adjuvant chemo...meaning a bit of a 'clean-up' to get any little buggers that set up shop somewhere else. My tumor did not give off markers so had I done the chemo they would not know if it was working or not. It was a chance I decided not to take. I opted to not do the chemo and have relied exclusively on alternative and complementery medicine.

I have been cancer free for 2 1/2 years as of two weeks ago.

I took my time making my decision but I think my onc wanted me to start within 6 weeks of my surgery. Your immune system needs some time to heal since surgery throws it off.

So I hope you will join our group and hang out with us and check in with your updates.

Give us some more of your story if you wish...stage....etc

peace, emily

sricar
Posts: 6
Joined: Feb 2004

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!

Bravesoul
Posts: 4
Joined: Mar 2004

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
Posts: 4
Joined: Mar 2004

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?

micky1109
Posts: 1
Joined: Apr 2004

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.

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