SURGERY, 5FU & LEUCOVORIN A YEAR OUT

ldot123

Hey gang,

I hope everyone is feeling well and staying positive. It has been over a year since my last chemo treatment of 5FU and Leucovorin. I had this over a six month stretch. I was given an injection of each every day for 5 days and then had three weeks off. By the end of the last treatment I was pretty well exhausted most of the time. Major fatigue. (by the way I was a stage 3, 2 lymph node positive out of about 20.) Doctors felt they got everything but wanted to do chemo as a precaution. I would like to hear from others that had a similar chemo regimen and how they felt a year or so after treatment. I can go through feeling good, not so good, good, downright crappy and then good again in one day!! Man it drives ya crazy. How does one describe this to a doctor. It is all so vague! Symptoms range from abdominal aches (from the surgery I guess-also got an incisional hernia Yay) tiredness and not feeling quite right. Like I said, vague. I have been NED so far and I go to see the surgeon about the hernia next week and then wait until December for a CAT scan. Sorry to ramble, but like I said, I would like to hear back from others with similar stories.

Cheers, Lance

lfondots63

CONGRATS!!!
Congrats on finishing chemo! Such a major step you should be dancing! I was 2 yrs out from chemo in July. December I will be a 3 yr survivor from dx. I still have neuropathy in my feet from the Oxi and that got worse after chemo was done but has stabalized now. I'm used to my new 'Normal'. The tiredness took a while to disapate but that is also gone. I even, unfortunately, gained the weight back that I lost during chemo. Many people asked what I was doing to loose the weight and I told them 'You don't want my diet plan'. LOL. Good Luck and enjoy!

Lisa F

mk1117

Follow up
Hello Lance,

It has been 3 1/2 years since I completed chemo. I have also had to adjust to a "new" normal. The fatigue is one of the things that continues to affect me. I tried to go back to my former job as a high school teacher, but it was just too exhausting. I now work part-time in an office setting - not nearly as much fun, but better for me and my family. The neuropathy in my feet & legs has, for the most part, gone away. It took over two years to feel a substantial difference with the neuropathy. I, like you, can have tremendous ups and downs in terms of energy and attitude in short time spans.

I lost weight right after my surgery, but have since put back on 30 pounds. It is really hard for me to exercise because I feel so tired after working. I wish that I could lose some weight, but I know it's the least of my issues.

It gets better as you get further away from your diagnosis, though.

Kathy

4law

SURGERY, 5FU & LEUCOVORIN A YEAR OUT
5FU on continuous pump for 6 weeks plus radiation; surgery removing most of rectum; 5FU and Leucovorin 1X week for 6 weeks followed by 2 weeks off -- repeated 4X for total of 32 weeks - last infusion was Dec. 2005. Regular colonoscopies and CT scans -- still NED. I was luckier than you because I had a port in my chest for my infusions, and they were only weekly. Daily injections would have been difficult for me - I hate needles! Fatigue hasn't been a problem for me, but my life seems to be revolved around bowel movements -- several times daily and I am planning my activities around planning where I will be or what I will be doing about an hour or so following meals. It's hard for me to get out of the house in the morning because I want to be sure I'm "empty" so I can go as long as posible during the day. After all this time following treatment, I feel my concentration at work has suffered. Overall, it beats the alternative. Yeah, these things suck, but let's be thankful for NED and let's hope that others will only have fatigue and frequent BMs to deal with. I hate this damn disease.

cahalstead

One Year After Chemo
I, too, finished up last September. I had to stop Oxy after 5 treatments, the neuropathy was affecting my legs too much and my dr. felt it wasn't worth it. I continued the rest of the 12 treatments with 5FU, leucovoran. I began feeling really good a couple of months after finishing the treatment. I feel better now than I have in years. I had my CT scan in March, my 1-year anniversary from surgery. it was clear. I have blood work done every three months and a super, super exam by my onc. He's one of the best. My energy level is really good, I did work throughout my treatment, it was tough at times but I made it. I sure hope I don't have to go through any more treatments but of course I will if necessary.

I feel I've been blessed, God has been very good to me. I take each day as it comes and enjoy each one God gives me. I go to all my appointments for follow-up, take care of myself as best as I can and let it go. I don't want to spend the rest of days worrying about "what if". I had a spinal fusion the December before my surgery in February, of last year. I'm amazed how well my body has served me. I do have periods of aching in my joints and bones at times. I don't know if it because of the chemo, probably has something to do with it.

I put on 30 lbs. during treatment (steriods). I've lot about 15 with more to go it's coming off slowly. That's okay with me. My chemo nurse told me I would lose it because it wasn't normal weight gain. Even if I don't I'm just thankful to be alive and well.

I hope everyone else is doing as well.

Char

epohdnayoj

surgery, 5fu & leucovorin
Hi Lance, I was diagnosed with Stage 111B rectal cancer in July/August 2005. Now, three years out from diagnosis, there is no evidence of disease and physically I am feeling great! I had the same chemo as you did but a different regimen - infusion only once-weekly, three weeks on one week off for 30 treatments, finishing up in August 2006. I also had pre-operative radiotherapy, one-week short course, 5 treatments. I was exhausted post-surgery and throughout treatment and suffered from arthritic-type pain (still do occasionally but it really is nothing to get me down anymore). I was vague like you and had poor concentration. I'm still emotionally up and down some days, mainly brought on by the worry of recurrence. However my concentration has returned (most days) and I have more energy now than I have had for years. In the five years prior to diagnosis I was suffering from severe fatigue and intermittent abdominal pain, but no more! I was diagnosed last year with osteoporosis and sacral insufficiency fractures (both of which my doctors blame on the chemo and radiation) but despite those ailments/injuries and some other side effects from surgery I have a feeling of physical wellness and mental alertness now that takes me back to how I felt ten years ago. I feel invigorated. With time you will feel this way as well I'm sure. Take care.

pamness

Great to hear that someone else has ups and downs
I am currently 15 months after treatment - surgery, 5FU, Leucovorin and Oxaliplatin, followed by 28 days of radiation and pump with 5FU five days a week. I am ned, although my last cea was a little high, but mine has always been a little off. I was IIIA - 2 postive lymph nodes. I too, have good days and tired days - more good than tired and still have trouble with my bowels. It is getting better, but I watch what I eat - can't exactly figure out what triggers things. I can go a week or two feeling good and positive - then I crash - I get tired for a few days and don't feel quite so opptomistic. Somedays just plan crappy, for no apparent reason. It is vague, there is no pattern, I am glad to hear that it isn't just me. I was very sick during chemo (oxaliplatin was tough, I made five of eight treatments) finished all the radiation and 5fu.

Anyway, glad I am not the only one who has strange ups and downs. Can't imagine the injection routine, I had a port - made things easy.

I was treated at Mass General - in Boston - where were you treated - never heard of the chemo being administered by injection five days a week. I only got two weeks off.

Pam

kmygil

Vague
Hi Lance,

I hear you! Although things have gotten better (1.5 yrs out from last chemo), I still have neuropathy in feet & on pads of fingers. Fatigue is a huge issue for me, and I still get pain in my incision area when I sit too long. From time to time, my leg swells where the chemo-induced blood clot showed up, but a real clot has not reformed. The bone pain still comes & goes although no cause can be found for it--they say it's an artifact from chemo. So yes, a lot of vague things that come & go and which impact your life in a lot of ways, from big to small. I have had to excuse myself on numerous occasions from meetings, because when I gotta go, I gotta go; no putting it off.

The amazing thing is that we are infinitely adaptable. You learn to live a good life despite these things, and you appreciate the things in/on your body that work properly. Like my....my...um, never mind:)

Hugs,
Kirsten

ldot123

kmygil said:

Vague
Hi Lance,

I hear you! Although things have gotten better (1.5 yrs out from last chemo), I still have neuropathy in feet & on pads of fingers. Fatigue is a huge issue for me, and I still get pain in my incision area when I sit too long. From time to time, my leg swells where the chemo-induced blood clot showed up, but a real clot has not reformed. The bone pain still comes & goes although no cause can be found for it--they say it's an artifact from chemo. So yes, a lot of vague things that come & go and which impact your life in a lot of ways, from big to small. I have had to excuse myself on numerous occasions from meetings, because when I gotta go, I gotta go; no putting it off.

The amazing thing is that we are infinitely adaptable. You learn to live a good life despite these things, and you appreciate the things in/on your body that work properly. Like my....my...um, never mind:)

Hugs,
Kirsten

Great replies
Thanks for your replies to my post. It is somewhat good to know that others have similar experiences. I noticed that some said they had weight gain. I did also after losing a bunch of weight after chemo. I guess it was a combo of comfort food and trying to get my energy back. I am into eating lots of fruits and vegetables plus have started to get back into exercise. I have to force myself sometimes. The vexing thing is that when these 'mysterious" ailments appear, they take you away from having a positive attitude. I noticed that no one had their chemo given by injection. I did not mind that. The hospital was only 5 minutes from my house and I could go in first thing in the morning and be out in 45 minutes. Anyhoo, if anybody else out there wants to add their two cents, please do.

Cheers, Lance

lfondots63

ldot123 said:

Great replies
Thanks for your replies to my post. It is somewhat good to know that others have similar experiences. I noticed that some said they had weight gain. I did also after losing a bunch of weight after chemo. I guess it was a combo of comfort food and trying to get my energy back. I am into eating lots of fruits and vegetables plus have started to get back into exercise. I have to force myself sometimes. The vexing thing is that when these 'mysterious" ailments appear, they take you away from having a positive attitude. I noticed that no one had their chemo given by injection. I did not mind that. The hospital was only 5 minutes from my house and I could go in first thing in the morning and be out in 45 minutes. Anyhoo, if anybody else out there wants to add their two cents, please do.

Cheers, Lance

Forgot something
Hi again!

Also, just to add my other two cents when I remember it is the 'chemo brain'. LOL. Nobody else mentioned this but I wanted to bring this up because it is real. I find that my memory was effected by the chemo. It really vexed my ex when I would forget stuff but it isn't anything that I could help. I would remember eventually but sometimes stress would make it worse. During chemo I remember going into rooms for something and looking around trying to figure out what I was doing. LOL. I just had to make jokes about it because getting upset didn't help. It has gotten better after chemo but I also have developed some coping skills. I would be lost without my calendar on my work computer. I schedule everything in it now from doctor appts to what my kids have to do. Just another part of my new 'normal'. Good excuse too for only being 44 and memory loss. LOL. HUGS.

Lisa F

msccolon

lfondots63 said:

Forgot something
Hi again!

Also, just to add my other two cents when I remember it is the 'chemo brain'. LOL. Nobody else mentioned this but I wanted to bring this up because it is real. I find that my memory was effected by the chemo. It really vexed my ex when I would forget stuff but it isn't anything that I could help. I would remember eventually but sometimes stress would make it worse. During chemo I remember going into rooms for something and looking around trying to figure out what I was doing. LOL. I just had to make jokes about it because getting upset didn't help. It has gotten better after chemo but I also have developed some coping skills. I would be lost without my calendar on my work computer. I schedule everything in it now from doctor appts to what my kids have to do. Just another part of my new 'normal'. Good excuse too for only being 44 and memory loss. LOL. HUGS.

Lisa F

chemo brain
Lisa, definitely had that, as probably 90% of the others on this board! I did get it worse with Oxaliplatin than i did with CPT-11 though! I found that it got much better as time out from chemo increased. I still do have memory lapses occasionally, but they can definitely be laughed off! I also have to keep a calendar, one in my purse and one on my desk. Whatever it takes! Mary

ldot123

msccolon said:

chemo brain
Lisa, definitely had that, as probably 90% of the others on this board! I did get it worse with Oxaliplatin than i did with CPT-11 though! I found that it got much better as time out from chemo increased. I still do have memory lapses occasionally, but they can definitely be laughed off! I also have to keep a calendar, one in my purse and one on my desk. Whatever it takes! Mary

Oh yeah I Forgot
Oh yes, Chemo Brain - what a joy! Without a doubt this is a reality. Doctors do not talk about it. Very annoying especially with the job I do. Technology supplier with new info coming in all the time. Mary, was it you that was in IT? Would read a page of information and would have to re-read a couple of times for it to sink in. Things in that department are much better now though. (except for the usual age related nonsense :-)
Lance

lfondots63

ldot123 said:

Oh yeah I Forgot
Oh yes, Chemo Brain - what a joy! Without a doubt this is a reality. Doctors do not talk about it. Very annoying especially with the job I do. Technology supplier with new info coming in all the time. Mary, was it you that was in IT? Would read a page of information and would have to re-read a couple of times for it to sink in. Things in that department are much better now though. (except for the usual age related nonsense :-)
Lance

Oh yeah I Forgot
Hi Lance,

I believe both Mary and I are in the IT dept. It does get to be a challenge sometimes. I save all e-mails and also send myself 'reminder' e-mails with information. Also have reminders on a lot of tasks that I need to do. All part of my new 'normal' and my Outlook is my savior. LOL.

Lisa F

kmygil

ldot123 said:

Great replies
Thanks for your replies to my post. It is somewhat good to know that others have similar experiences. I noticed that some said they had weight gain. I did also after losing a bunch of weight after chemo. I guess it was a combo of comfort food and trying to get my energy back. I am into eating lots of fruits and vegetables plus have started to get back into exercise. I have to force myself sometimes. The vexing thing is that when these 'mysterious" ailments appear, they take you away from having a positive attitude. I noticed that no one had their chemo given by injection. I did not mind that. The hospital was only 5 minutes from my house and I could go in first thing in the morning and be out in 45 minutes. Anyhoo, if anybody else out there wants to add their two cents, please do.

Cheers, Lance

Chemo Brain
Oh yes. My house is decorated with Post-It notes instead of art, just so I remember what is where and what I usually do when I walk into certain rooms:)

msccolon

ldot123 said:

Oh yeah I Forgot
Oh yes, Chemo Brain - what a joy! Without a doubt this is a reality. Doctors do not talk about it. Very annoying especially with the job I do. Technology supplier with new info coming in all the time. Mary, was it you that was in IT? Would read a page of information and would have to re-read a couple of times for it to sink in. Things in that department are much better now though. (except for the usual age related nonsense :-)
Lance

what do i do in IT
I am a computer programmer, or if i want to be fancy, software developer! I have gone into programs I wrote during chemo and wonder what the heck I was thinking! I could only work on very simple processes, would leave more complicated ones for when I was off chemo. My boss has been very understanding throughout. Mary

pamness

kmygil said:

Vague
Hi Lance,

I hear you! Although things have gotten better (1.5 yrs out from last chemo), I still have neuropathy in feet & on pads of fingers. Fatigue is a huge issue for me, and I still get pain in my incision area when I sit too long. From time to time, my leg swells where the chemo-induced blood clot showed up, but a real clot has not reformed. The bone pain still comes & goes although no cause can be found for it--they say it's an artifact from chemo. So yes, a lot of vague things that come & go and which impact your life in a lot of ways, from big to small. I have had to excuse myself on numerous occasions from meetings, because when I gotta go, I gotta go; no putting it off.

The amazing thing is that we are infinitely adaptable. You learn to live a good life despite these things, and you appreciate the things in/on your body that work properly. Like my....my...um, never mind:)

Hugs,
Kirsten

when you gotta go
My goodness, I know about the when you gotta go you gotta go. It happens less often these days, but when it does - well

you have to leave.

Pam

fedester

treatment and beyond
lance,
congrats on finishing treatment. i had the same regiment but once a week for 6mo.
i was dx stage2 no lymph affected may04. i finished treatment 1/05. chemo was for precaution only because of my age 46. everyday gets better, a good attitude helps, yes you will have down days also that is why this site is so important. i have vented here quite a bit over the years. everytime i vented my family here was there lending support and advise and prayers. so vent if you need to because we are here for you. and yes chemo brain does exist. i still get it sometimes. please get the hernia fixed asap. i had 3 surgeries for my hernia.
be well
never,ever give up!!
bruce