newly diagnosed--help!!!

sricar

My 68 year old mother was just diagnosed with Stage III, one lymph node of 15 involved. The PET scan for the liver is next week. The oncologist is recommending 5-flurouralil and leucovorin. We don't know what we're looking at...doctor said that the only side effect would be diaherrea. For some reason I think there will be more to it. Please let us know what to expect. Any advice would be appreciated. In particular, what was the energy level like?

Sheepy

First - welcome!
Second - one lymph node of 15 is very good (I hope that's true, mine was one out of 22..).
Third - depends what regime your mother is being recommended for chemo, but assuming it's a weekly six-month treatment the symptoms could vary but tend not to be as bad as some more intensive treatments - e.g. I get nausea which doesn't seem to be cured by any pills (but goes away for a bit when I sneeze!!), slightly sore/flaky fingers, and occasional diarrhoea - but what I'd say about chemo is it's just plain weird and very hard to describe.

I'm on chemo 15 of 30, and feeling fine except on chemo day itself.

My own mother underwent chemo at a similar age to yours, and stood up to it well- the main thing she had to do was drink lots of fluids, all the time.

kangatoo

Sheepy said:

First - welcome!
Second - one lymph node of 15 is very good (I hope that's true, mine was one out of 22..).
Third - depends what regime your mother is being recommended for chemo, but assuming it's a weekly six-month treatment the symptoms could vary but tend not to be as bad as some more intensive treatments - e.g. I get nausea which doesn't seem to be cured by any pills (but goes away for a bit when I sneeze!!), slightly sore/flaky fingers, and occasional diarrhoea - but what I'd say about chemo is it's just plain weird and very hard to describe.

I'm on chemo 15 of 30, and feeling fine except on chemo day itself.

My own mother underwent chemo at a similar age to yours, and stood up to it well- the main thing she had to do was drink lots of fluids, all the time.

Hi sricar--I am on 5FU/LEU at the moment--have been for 5 months.I have chemo 5 days straight then get 3 weeks to recover before the next round--have one round to go now--thankfully!Most of the chemo "users" over here in Aussie that I know get very different reactions.I myself have had the following.
1st week while getting chemo--ok for the mon/tues/wed--then feeling sick on thursday and friday--metallic taste in mouth becoming obvious.
2nd week--nausea gets worse/some vomiting--take maxillon?pramin to stop throwing up-however the nausea feeling does not go away--just feel sick 24 hrs a day.Some trouble with mouth ulcers(do NOT use strong preps. like LISTERINE--THEY BURN MOUTH--because mouth becomes sore as chemo affects mouth cells.)I use DIFFLLAM and ORAL-B.Fatigue/tiredness sets in for this 2nd week/lots of sleep needed.For some reason the wound in my stomach becomes sore--who would think that as op. was 5 months ago?--go figure!I also suffer some bad nights unable to sleep even tho VERY tired!The diarrhoea only hits me for about 48 hours during the 2nd week--needless to say the rear end burns somewhat(chemicals?) but a good bath is soothing.
3rd week--metallic taste dissappears and so does nausea(not completely tho)--energy levels improve but sleep pattern now totally out of control.I just begin to feel great about 3 days befor my next round of chemo then they want to give me the poison again!!!!
Overall the chemo is (for me anyway) just bearable but always are apprehensive about starting each session again--thank god the next round is hopefully the last!
As I said, it is different for everone -it is totally impossible to explain the "wierd" feeling to those who have never been on chemo as sheepy said.
Hair loss was minimal with only some "thinning"
I wish your mother well and hope her side effects are minimal.
cheers and best wishes-kanga

hoosier_kitten

Hi!
To add my two-cents worth, I was 50 when I started chemo. recently turned 51, and am on the 5/fu-leu regime. I take it weekly for 4 weeks then a 2 week break. I was diagnosed in May of last year and had a colon resection, hysterectomy, and lymph node removal.

The treatments for me are going well. Some nausea, hair thinning, and am very susceptable to the cold weather and certain smells. Also am very fatigued and am getting more so as I go on. Had a treatment today and came home and slept 7 hours and am ready to go back to sleep now after being up only 2! All in all, I am doing very well. Have to remember to watch for colds, etc. Oh yeah, I was anemic at first but 3 shots of something like procrit took care of that. As eceryone says, all are different, hope this helps. Will keep you in my prayers. (Saying the Rosary before each treatment hasn't hurt me yet!)

Rita

psctbill

I'm a 63 year old male who's been figting this for 4 and a half years. I was stage III with 7 out of 60! lymph nodes involved. Yep it was leucovorin and 5FU for almost a year with 5 weekly treatments and then one week off. Nausea kind of bad the 2nd day after treatment but then not too bad thereafter. Watch out for acid reflux or burning of the esophogus. Nexium worked the best for me. Fatigue was the worst problem needing daily naps and loss of ambition to do just about anything. Hair loss minimal. At the conclusion of this we monitored blood counts particularly the CEA which never had been very high, maybe in the 3-4 range. Nine months later this went up to 6.6 and my surgeon ordered a PET scan which illuminated the liver area. Subsequent CT scans showed two lesions on the right lobe. It was decided to do a liver resection to cut out the affected area but once inside it was evident that the cancer had spread to the abdominal cavity or wall and that liver surgery would be ineffective. So it was back to weekly chemotherapy but with the addition of comptosar and a study drug Avastin. The side effects were now worse, particularly the fatigue. So this is quite a ways down the road from where your mother is so I will close by abbreviating the recent months. The cancer on the liver has not grown nor shrunk, all blood counts are normal, and I am on a reduced chemo program, every three weeks which I can tolerate quite well. Where the other cancer seen in the abdomin during surgery is, who knows because the CT scans are not sensitive enough to see it. So we live day to day and hope what we are doing will keep the cancer at bay.

spongebob

Ahoy, sricar -

So there ya have it - chemo does everyone differently.

Big thing is (a) you rock for having come here to get info to help your mom. Having support when one is going through this is soooo important. (b) Help your mom keep a good attitude. That will be the most valuable tool in her kit as she fights this disease.

Keeping you guys in my thoughts and prayers.

- SpongeBob

jsabol

Hi and welcome to you and your mom,
Lots of info here, and plenty of support! I'm 53, disgnosed in Nov, colectomy in Dec, with 1 positive node also. I've just completed the first quarter of my chemo tx's with 5FU and leuco. My schedule is weekly, 6 weeks on and 1 or 2 weeks off, depending on how well I tolerate the stuff. So far, I feel pretty lucky. I've had a few episodes of diarrhea, stopped cold with Immodium, and now use Metamucil daily to keep me regular. No nausea, no metallic taste, but increased saliva. My appetite is good (no raw veggies or salads, which gave me stomach cramps) and the main problem has been fatigue, seeming worse each week. I have 2 kids in high school, and work 4 days a week, so I have to scale back on some days. Daily nap is a must, and my weekends after chemo, I stay in my jammies and really try to relax.
One recommendation that I took to heart is to drink plenty of fluids, particularly on treatment day. I figured I drink at least 48 oz of water the afternoon of my infusion, and maintain good fluid intake on other days, too.
I've encountered a problem with access to good veins. One hand is now blotchy and discolored, leaving only my right hand for infusion. The veins on the back of my hand feels so sensitive now that I'm having a port put in prior to my next series.
Some people can experience mouth sores, apparantly not common, but I have a prescription "super mouth wash" in my frig just in case.
The protocol/schedule described by kangatoo doesn't seem common here in the states.
I'm not sure why onc's are so withholding with info re side effects; I think mine didn't want to scare me, but I'm a "need to know" kind of person, and a nurse, so just keep pressing for answers to whatever questions you have.
My dad had the same chemo regimen for 1 year, and at 82, he also tolerated it well. Good luck to you both. Hope this isn't too much detail; your mom is lucky to have your support. Judy

kangatoo

jsabol said:

Hi and welcome to you and your mom,
Lots of info here, and plenty of support! I'm 53, disgnosed in Nov, colectomy in Dec, with 1 positive node also. I've just completed the first quarter of my chemo tx's with 5FU and leuco. My schedule is weekly, 6 weeks on and 1 or 2 weeks off, depending on how well I tolerate the stuff. So far, I feel pretty lucky. I've had a few episodes of diarrhea, stopped cold with Immodium, and now use Metamucil daily to keep me regular. No nausea, no metallic taste, but increased saliva. My appetite is good (no raw veggies or salads, which gave me stomach cramps) and the main problem has been fatigue, seeming worse each week. I have 2 kids in high school, and work 4 days a week, so I have to scale back on some days. Daily nap is a must, and my weekends after chemo, I stay in my jammies and really try to relax.
One recommendation that I took to heart is to drink plenty of fluids, particularly on treatment day. I figured I drink at least 48 oz of water the afternoon of my infusion, and maintain good fluid intake on other days, too.
I've encountered a problem with access to good veins. One hand is now blotchy and discolored, leaving only my right hand for infusion. The veins on the back of my hand feels so sensitive now that I'm having a port put in prior to my next series.
Some people can experience mouth sores, apparantly not common, but I have a prescription "super mouth wash" in my frig just in case.
The protocol/schedule described by kangatoo doesn't seem common here in the states.
I'm not sure why onc's are so withholding with info re side effects; I think mine didn't want to scare me, but I'm a "need to know" kind of person, and a nurse, so just keep pressing for answers to whatever questions you have.
My dad had the same chemo regimen for 1 year, and at 82, he also tolerated it well. Good luck to you both. Hope this isn't too much detail; your mom is lucky to have your support. Judy

Hi guys--it is incredible how different everyones treatment is.As judiths said I am on an unusual regime--it does not seem to be too radical compared to a lot of you.I am unable to say how many lymph nodes were affected or removed , however the surgeon did say that everthing seemed ok elsewhere when he had me opened up.He did say that because the cancer had gone thru the bowel wall there was an invasion of lymph "vessls" and blood vessels---maybe I should ask him for more details?
Oh--and Btw guys---for the bad metallic taste I have tried "flat" ginger beer or crystalized ginger sweets which do seem to help.
cheers guys, kanga

pattieb

kangatoo said:

Hi guys--it is incredible how different everyones treatment is.As judiths said I am on an unusual regime--it does not seem to be too radical compared to a lot of you.I am unable to say how many lymph nodes were affected or removed , however the surgeon did say that everthing seemed ok elsewhere when he had me opened up.He did say that because the cancer had gone thru the bowel wall there was an invasion of lymph "vessls" and blood vessels---maybe I should ask him for more details?
Oh--and Btw guys---for the bad metallic taste I have tried "flat" ginger beer or crystalized ginger sweets which do seem to help.
cheers guys, kanga

Kanga
You can also take ginger ale and put in your favorit tea heat it up just like regular tea
Pattie

QUEENFISH

pattieb said:

Kanga
You can also take ginger ale and put in your favorit tea heat it up just like regular tea
Pattie

i had 5fu continuous infusion for 3 months and now am having eight months of 5fu and leucocovorin (about 2 months in). I have had, thined hair, foot and hand syndrome (that's where your feet and hands are wrinkly and dry)mouth sores, sores in unmentionable places, extreme dry skin, diareah, nausea, and that's the ones I can remember. I guess everyone reacts differently to the drugs.

alicemarie

kangatoo said:

Hi guys--it is incredible how different everyones treatment is.As judiths said I am on an unusual regime--it does not seem to be too radical compared to a lot of you.I am unable to say how many lymph nodes were affected or removed , however the surgeon did say that everthing seemed ok elsewhere when he had me opened up.He did say that because the cancer had gone thru the bowel wall there was an invasion of lymph "vessls" and blood vessels---maybe I should ask him for more details?
Oh--and Btw guys---for the bad metallic taste I have tried "flat" ginger beer or crystalized ginger sweets which do seem to help.
cheers guys, kanga

I was diagnosed this month and am now undergoing 25 radiation treatments and a chemo pump which started yesterday. I do not know how I will react but the doctor told me that I should do well. I have colonrectal cancer. Please, someone out there must know how this treatment works and I will need surgery after this and perhaps more chemo. Let me know what you are going through and maybe we can go through it together. I will try the ginger beer or crystalized ginger treats. Being a diabetic I do not know about the treats, but I am glad to find out.

Thanks

corrine c.

psctbill said:

I'm a 63 year old male who's been figting this for 4 and a half years. I was stage III with 7 out of 60! lymph nodes involved. Yep it was leucovorin and 5FU for almost a year with 5 weekly treatments and then one week off. Nausea kind of bad the 2nd day after treatment but then not too bad thereafter. Watch out for acid reflux or burning of the esophogus. Nexium worked the best for me. Fatigue was the worst problem needing daily naps and loss of ambition to do just about anything. Hair loss minimal. At the conclusion of this we monitored blood counts particularly the CEA which never had been very high, maybe in the 3-4 range. Nine months later this went up to 6.6 and my surgeon ordered a PET scan which illuminated the liver area. Subsequent CT scans showed two lesions on the right lobe. It was decided to do a liver resection to cut out the affected area but once inside it was evident that the cancer had spread to the abdominal cavity or wall and that liver surgery would be ineffective. So it was back to weekly chemotherapy but with the addition of comptosar and a study drug Avastin. The side effects were now worse, particularly the fatigue. So this is quite a ways down the road from where your mother is so I will close by abbreviating the recent months. The cancer on the liver has not grown nor shrunk, all blood counts are normal, and I am on a reduced chemo program, every three weeks which I can tolerate quite well. Where the other cancer seen in the abdomin during surgery is, who knows because the CT scans are not sensitive enough to see it. So we live day to day and hope what we are doing will keep the cancer at bay.

I'm a 57 year old female and was also recently diagnosed with cancer - mine is in the esophogus. All of the diagnostic tests are in and I will start chemo and radiation therapy next week.

It's all too new to understand where I will find the strength to fight this, but I know all we can do is take each day at a time and try to be positive around those we love so their burden is easier.

Hang in there. Sounds like you have had a tough time.
If the heart is willing, all things are possible.
Regards,
Corrine C.

RCS2004

alicemarie said:

I was diagnosed this month and am now undergoing 25 radiation treatments and a chemo pump which started yesterday. I do not know how I will react but the doctor told me that I should do well. I have colonrectal cancer. Please, someone out there must know how this treatment works and I will need surgery after this and perhaps more chemo. Let me know what you are going through and maybe we can go through it together. I will try the ginger beer or crystalized ginger treats. Being a diabetic I do not know about the treats, but I am glad to find out.

Thanks

Hi Alice, I am a colonrectal cancer survivor.I went through 28 radiation treatments and I was on continuous chemo for 6 weeks straight 24/7 it was 5Fu and loucavorin...I have had 22 operations but I am here to tell you it is worth it even on my worse days!!!I am 44 now...was almost 42 when diagnosed....wow 3 years have gone by ...not going to tell you every single day was the greatest..it was the hardest fight of my life...but I followed the doctors orders and am able to sit here and type and do most of the things I have wanted to do.even through out my treatments ...ask lots of questions get answers...make sure you understand exactly what is going on...ask for second opinions...Don't be afraid to speak up.....I will add you to my prayer list...I understand what you mean when you say--help!!!!! It feels as though the wind has been knocked right out of your sails.....It is scarey.don't let anyone tell you it isn't....there will be days that you think you can't do it...but you can and you will...Ask to speak with a oncology social worker,ask what the side effects are of all your treatments????Be your own BEST ADVOCATE........get information all you can on your specific cancer...I wish you the best of Luck and I will keep you in my prayers...email me anytime....