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recovery from 5FU

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Subject: RE: recovery from 5FU
Date: 10/16/2007

I actually have the probiotics here that I used during radiation.  I didn't realize they would be beneficial after so I'll have to start using them.  I would LOVE to see the Osteen's in person.  My mom was raised in Abilene, TX and saw his dad when she was young.  Yes, the power of prayer is an amazing thing.  I just met my surgeon today and guess what?  He's a born again christian and he held my daughter and my hands and prayed for me.  Isn't that the neatest thing ever, usually surgeons are pretty egotistical so this is miraculous.  I can't wait to tell my pastor about it at bible study tomorrow night.

 

Thanks for all of the nutritional info.!

Terry

Patient
Patient
Life is worth the fi
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Subject: RE: recovery from 5FU
Date: 10/17/2007

It took me a good 4 or 5 weeks to recover from 5 fu and radiation. I am now 2 weeks post op.. first surgery. You can read all the details under the posting it's finally here my surgery date is Oct. 2nd. Other than my cath./bladder problem it's not been as bad as expected. Today I got my cath out again and it looks like things may be ok... I am still having pain urinating and going often BUT at least it is working. Urologist said today it just took time to wake up from the major sugery. I am still on flomax and another UT drug.

 HANG IN THERE! We will get through this!

One last thing... I have a temp. ileostomy and for now I hate it... I will not lie to you.. it sucks... I cant' stand the smell and hate emptying it 6 or more times a day. It makes me sick to my stomach. I guess I will adjust eventually. I will have the surgery to fix it after my  4 months of more chemo.. 5 FU and Eloxatin.

Anita

Subject: RE: recovery from 5FU
Date: 10/17/2007
Hi Anita, What kind of surgery did you have?  Was it a local excision or did you have an AP resection?  I was going to have the AP resection and would end up with a permanent colostomy but now I'm considering just doing the local excision with a temporary illeostomy.  An illeostomy is worse than a colostomy because it oozes constantly.  At least it's only temporary, hang in there!
Subject: RE: recovery from 5FU
Date: 10/23/2007

HI,

been there, done that.  I had six weeks of continuous 5FU plus radiation 5xweek for 6 weeks - felt fine for the first four weeks, then got radiation proctitis and ended up in hospital on tube feeding for the last two weeks of radiaiton (they discontnued the 5FU after the fifth week).  Other complications set in (septicemia from the tube feeding, etc), but it did shrink my stage III tumour 90% and knocked it out of the lymph nodes (more than 3) totally; so the surgeon was able to do the full mesorectal excision with a temporary ileostomy.  I was knocked out to a farethewell- have two daughters who were preteens at the time, and it was all I could do to make it through an hour or two without a nap.  Cold all the time, and no energy.  That was even worse after the adjuvant chemotherapy - did FOLFOX - the acute neuropathy was extreme - couldn't go into the refrigerator without gloves on and warmed drinks for 30sec in the microwave to swallow.  Highly recommend mittts and booties sold by Gardener's Supply among others - they have herbal microwave inserts in microfleece boots and mitts, really helpoed when I was feeling cold all over.  A couple of things about oxaliplatin and the other platinum based drugs; despite all the side effects, I would DEFINITELY go through it again - I have just passed 26 months since my surgery - all my tests have been clean - life is looking good.  I do, however, have persistent peripheral neuropathy in my feet and lower legs (it has slowly receded from my fingers).  This peripheral neuropathy did not appear until after the last round of 8 (or was it sx, I cannot even remember now - of course, "chemo-brain" seems to last longer these days too!) chemos, but it was so bad that I originally needed PT to be able to judge where my feet where in relation to the ground as I could not feel them.  I have tried Neurontin, colosterase, cymbalta (low dose) - it has definitely improved, but the improvement plateaued about 9 months ago and I sense that I am just going to LIVE with this (operative word, live).  I have since researched this extensively (my husband is a neuropharmacologist) and it seems that recent studies show that there seems to be some success in avoiding the peripheral neuropathy altogether if you are give a prophylactic dose of neurontin or a similar drug before therapy.  If you are going to have one of the platinum based durg therapies, consult with your doctor about the possibility of concurrent or neoadjuvent therapy to avoid neuropathy.

Got rather side-tracked - meant to tell you that two months after my reversal I took a five week vacation into central Alaska - hiking, rafting etc - felt pretty good.  Since then, I have had numerous trips, am back to teaching and have most of my energy back.  As a matter of fact - I look and feel better now than I did "pre-cancer" (diagnosis) as I lost some extra pre-menopausal weight that I had put on and everyone comments on how fantastic I look (I tell them that I wouldn't recommend the diet, but every cloud has a silver lining!).  The only real drag on my energy level is that I still have not had a full night's sleep - I have to go to the bathroom at least once, usually two to four times a night, and I find that it takes a toll.  I have learned to take advantage of a free moment for a "cat-nap" - my family is used to seeing me go down for a half hour every so often.  Don't hesitate to do this for yourself - you are superhuman enough to go through cancer therapy - don't feel you have to "perform" as you used to!

Subject: RE: recovery from 5FU
Date: 11/26/2007

Thanks for info.  I'll be starting the folfox in a couple of weeks.  I'm hoping the doc will wait until after the holidays.  My daughter bought me some booties that have inserts you microwave and they smell wonderful!  I hope your neuropathy gets better.  I will ask my doc about taking the neurontin prophylacticlly, it's worth a try right!

 

Thanks again!

TErry

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