5Fu After Almost On Eyear

Hello everyone,

I hope everyone is hanging in there and trying to stay positive. I have posted to this site a number of times and it is comfort to interact with other CC survivors and fighters.

I always appreciate everyones input especially yours Arnold. You always seem to be checking out the board  and offering advice and suggestions.

Here is my latest update. I am almost 1 year out from my last chemo treatment (August - 5FU and leucovorin) I am pleased to report that I am finally getting energy back although I try not to overdo things. I have times when I feel fairly normal and other times when I don't feel "quite right" The latest seemingly recurring issue is that I get ear and headaches plus ongoing ringing in the ears. The ringing actually started shortly after my last chemo. I am not sure if I should attribute this to a lingering effect or if it is just coincidence. It drives me a bit crazy as I tend to obsess about these symptoms. I have had the ears checked out, my GP says they look normal but is sending me for a hearing test,

At any rate, I would like to hear back from anyone else who went through 6 months of this chemo regimen and find out what their experience was with long term side effects. I am sorry to sound like a whiner but it seems that once I start to feel better some other odd symptom will appear that does not quite feel like a "normal" sickness. I sometimes think that this is the "new normal" 

I suppose I should not complain as my checkups have been good and my doctor is optimistic about  my outcome (stage III- 2 node involvement)

Sorry to rattle on, I always tell others to stay positive, but sometimes I can't listen to myself. Thanks for listening.

Cheers 

my husband is 1 yr post chemo (may 07)  his biggest complaint is the neuropothy.   he has numbness in his fingers and feet-  the fingers have improved some but the feet seem worse.

he did develop a nasty case of shingles in jan. as a direct result of the chemo (the chemo compromised his immune system)  that lasted for about 6 weeks.  now he is stuggling with lower back and hip pain.  he had an mri done and it shows a bulging disc so he is going for treatment for that.

he does to tire more easier than before the chemo.  has to take lots of brakes  between projects.  but basically he is hanging in there.

 all the tests so far have been very good- no evidence  and his blood work has been good. 

good luck on solving your ringing problem.

 

Hi LToronto......I'm back!!

We have written each other---I'm 'the one' that decided to stop taking chemo on cycle #9 as I broke out in hives and realized my body is trying to tell me something. ...apparantly I caused an uproar on here....many different opionions on here..  Anyhow, I'm doing good---test results came back fine.   Still don't feel 'normal' yet and like you.....don't know if 'normal' will ever come back.  My last chemo was in March, and I still have neuropathy.  How long was it after your chemo that you returned back to work?  My question is about the 'follow-up'....I've had the bloodwork done and ultrasound.....should that be enough???        Anna

Hi there,

I worked for the most part through my chemo (crazy but true) Well let me say the first round of chemo knocked me for a loop so I was off a week getting rehydrated. They reduced the amount of chemo by 25%. That seemed to help a lot. I had six months of chemo (1 week on, 3 weeks off) It really had a cumalative effect where by the end I was exhausted most of the time. Would take the odd day off or go home early if too tired.

I am having an ultrasound and chest xray in August. It seems like a lot of other people get cat and pet scans and I wondered if I was getting enough diagnostic imaging. One person told me that it probably is a good idea as there may be issues with getting too much exposure to radiation. I trust my doctor so I am OK with it.

Stay Well!!

Cheers

I finished up my treatment in Feb. 08 and the only real problem I still have is the neuropathy. I was diagnosed the same as you Stage III w/2 nodes and had the same treatment. Once in a while I still get a pain or two which may be some scar tissue around the incision site but no big deal. Then again, I didn't have any big problems with chemo, only some constipation, I never got sick or tired. Just depends on how your body is able to handle it.

Hi to all,

I didn't feel normal for nearly 1 1/2 years after ending chemo.  But the good news is that I did start feeling normal, so don't give up.  I still have peripheral neuropathy, worse in feet than hands, but much improved.  A couple of months after chemo ended I developed shortness of breath and had an abnormal lung scan.  Had a broncoscopy done and lung biopsies were taken, but results were inconclusive.  I eventually started feeling better so the drs. decided it must have been a side effect of chemo.  The follow-up scan showed improvement.  My energy finally returned and I even gave up my afternoon naps!

Lynn 

Hi Lynn,

I figure it is taking me a lomg time because of the Hodgkins treatment I had 20 years ago. It was pretty extreme chemo at that time, much harsher than the 5FU. Going through chemo a second time especially at the age of 57 takes it's toll. I guess the problem is trying to determine if the way you are feeling has to do with age, chemo or both. The underlying fear is recurrence but I am trying to live day by day. In the grand scheme of things, overall I feel relatively good, not great, just good although not quite "normal"

Cheers 

Hi !.  I have been off the same chemo regimen for 3 weeks now.  Five months of folfox, etc.  Still waiting for my appetite to come back.  Other than that, I only have the typical "not what I used to be" feeling after three years of fighting this beast.  Three major surgeries, three different chemo regimines, many scans, radiation, 237 doctor visits, etc., etc.  I am still here !!.  When I think of the alternative, I'm doing great.  I'm 71 and I go to the gym 6 to 7 days a week and do 8 to 12 miles on the stationary bike.  We also have a beautifull walking path 1 mile long in a local park that we go to 4 to 5 times a week.  If you are not doing it please get out and excercise.  I have been doing it for many years and the Docs said it saved my life.  I'm able to maintain my weight (5'9" 175) and I get at least 4 to 5 hours of feeling "normal", whatever that is.  Rember, fight like hell, stay positive and never give up hope.  Keep you family, friends and your best friend, God, close to you.  God Bless aand Good Luck!

 

On 6/19/2008 LToronto wrote:

Hi Lynn,

I figure it is taking me a lomg time because of the Hodgkins treatment I had 20 years ago. It was pretty extreme chemo at that time, much harsher than the 5FU. Going through chemo a second time especially at the age of 57 takes it's toll. I guess the problem is trying to determine if the way you are feeling has to do with age, chemo or both. The underlying fear is recurrence but I am trying to live day by day. In the grand scheme of things, overall I feel relatively good, not great, just good although not quite "normal"

Cheers 

Hi LToronto,

You've been through quite a lot.  I've heard the Hodgkins treatment is rough.  I thought Folfox (oxaliplatin & 5fu) were bad enough.  But you're still here.  Yea.  I bounced back quicker from colon cancer surgery and chemo at 40 than small bowel cancer surgery and chemo at 2 years ago at age 54.  I'm guessing both age and chemo are to blame.  I'm having surgery next week to remove an "unknown" from the small bowel.  I'm praying it's not cancer again.  I'm 56 now and would dread having chemo a 3rd time.  You're not far ahead of me so don't talk like 57 is over the hill, please!  I do believe you'll feel normal again one of these days.  It will be so gradual that you won't notice it but one day you'll look around and realize you're there.  I hope it is soon for you.  Take care.

Lynn 

Hi-

Regarding getting a chest Xray instead of a CT scan... CT scan are the "gold standard" and are considered routine.  Some Dr's don't do them right away because of pressure from insurance companies- CT's are definitely expensive.  I have been told, however, that any "spots' that might be in the lungs have to be a 1/2 cm. or more in order to show up on an Xray, which means you could have lots of spots that are 5mm or smaller and have nothing show up on the Xray, but they would on a CT.  Also- just so you know, a CT/PET combo scan does not show up as much on its CT portion of the scan as a regular CT scan does.  I would push for the CT.  I'd personally much rather know for sure what's there and what's not.

Good luck!

Lisa