CancerCompass message board discussion started by Snowmom60 on 10/2/2007 http://www.cancercompass.com/message-board/message/all,16681,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ It's been two weeks now since I finished my 5FU and radiation.  I am still soooo tired, how long does it take to start feeling energetic again?  I feel like I've just lost my  umph and can't get it back.  I'm also having terrible hot flashes from the radiation frying my ovaries, does anyone know of a natural remedy for these?  I refuse to go on hormone therapy I think that's why so many of my husbands relatives got breast cancer.Terry Snowmom60 Tue, 02 Oct 2007 00:00:00 GMT Terry: I did six rounds of 5FU (and a few other drugs that don't come to mind right now) but no radiation.  About a month after the last round I noticed the total tiredness slipping away and a slow increase in energy after that.  Now at four months out I feel like I'm back to 95% and probably won't go much past this level.  During the late stages of the chemo I struggled to make it past 2:00 PM at work.....now a full work day followed by a trip to the gym is a snap!  Hang in there! TerryC TerryC Tue, 02 Oct 2007 00:00:00 GMT Thanks for your reply!  Actually, about two days ago I started feeling a little better, I even took a long walk which I think helped even more.  I've been trying to push myself instead of letting it overtake me.  It's to bad I have to feel better so I can have surgery and feel lousey again to feel better again to have six more months of chemo and feel lousey again.  What a viscous circle.  Oh well it's worth living right!Take care! Snowmom60 Fri, 05 Oct 2007 00:00:00 GMT I had 5-FU via continuous infusion along with radiation and a weekly dose of oxaliplatin. It took about four or five weeks after that regime to get the energy level back to a reasonable level. I have also had another round of 5-FU post surgery and have felt that my energy level returned about two weeks after the last treatment. Hope this helps. Paddy1 Sun, 07 Oct 2007 00:00:00 GMT I actually started feeling more energetic about 4 days ago.  I'm feeling pretty good all day and then start to fizzle in early evening but it's getting much better!  I still have to do the 5FU, oxi and Luecovarin yet, I heard it's not fun. Thanks for your reply.Terry Snowmom60 Sun, 07 Oct 2007 00:00:00 GMT My husband has colon cancer and just finished 28 radiation treatments and four courses of oxiplatin, 5-FU and leukovorin (every 2 weeks), he will be having surgery in about 2 weeks.  They gave him these treatments to shrink the tumor which was about 10 cm when discovered.His tests for the "tumor markers" were all negative and initial CT scan just showed a thickening of the colon wall.  It took the doctors quite a while to decide if it was really cancer or not.Anyhow, after the radiation treatments, his butt looked like an overcooked ham, just almost burned.  And the chemo makes him very sick.  He threw up for three days continuously after this last one, and that's in spite of the "anti-nausea" two drugs which only helped a little bit.  He has a lot of pain, caused in part by his hernia which will also be repaired when they take the tumor out.The side effects of the cold sensitivity lasts about 2 days after the chemo is taken off.  He has a chemo pump that he wears for about 22 hours x 2 days, plus the 4 hour infusion at the cancer treatment center.  One think that amazes me is the great variation in the number and duration of people's treatments.I talked to one lady who had been diagnosed with stage 4 and had cancer practically everywhere.  She was absolutely sold on the chemo, says last exam showed she was nearly cancer free and she feels great.But another guy, a former police officer, had to discontinue the oxyplatin after a while because the cold sensitivity and numbness began to last longer and longer.My husband was supposed to have 2 more sessions of chemo (about a month's worth), but after his last treatment, he decided he just couldn't take it anymore.  His surgeon says if it was him, he wouldn't take those last two either, says it wouldn't make too much difference.  Surgery should remove the tumor, but the surgeon left it very open as to what exactly my husband will wake up with....a few inches of colon removed or a bag.  Pretty scary.  I wish we knew more.      Archer Tue, 09 Oct 2007 00:00:00 GMT I don't know if I would continue chemo either if I puked for three days!  I did pretty well with the continuous infusion 5FU, minimal nausea, no metallic taste, just tiredness.  I know it's scarey to think about the possibility of ending up with a colostomy bag.  I have to have one permanently and at first I was really depressed.  I'm a nurse and I've cared for patients with them in the past so I know they're not that difficult to take care of, it's just the whole "stigma" of it.  I've thought about a lot of positives, especially after radiation when I could barely make it to the bathroom with bouts of diarrhea.  You don't have to worry about that anymore.  Save money on TP;)  Try and find the positive.  There's a website called www.ostomyland.com and you can ask any questions you may have.  Hopefully he won't end up with one but maybe it will make you more comfortable with the possibility. Good LUck!Terry Snowmom60 Tue, 09 Oct 2007 00:00:00 GMT My mom finished her treatments in January. She's doing great and so far cancer free. She is 80 years old. She opted to do a transrectal excision, then  radiation with chemo and then 8 weeks of the 5FU. She made it through the surgery, chemo/radiation and 2 of the 8 chemo treatments. It was too much for her, she had too many health problems. I don't know how old you are....but you can do it. Just look to the future. Next year at this time, you will be cancer free! Best wishes.PS: my mom is never home, she's constantly riding around town on her scooter going to birthday parties and eating out! What a difference a year makes!  Linb1414 Tue, 09 Oct 2007 00:00:00 GMT A local musician came to our house (friend of a friend) and talked to my husband about his surgery (he had a similar procedure).  My husband is pretty scared about the surgery itself.  We just have to trust the doctor. Archer Sun, 14 Oct 2007 00:00:00 GMT Terry,I am writing on behalf of my husband.  He has just completed 6 weeks of xeloda (5fu oral form), radiation and avastin.  He suffered very little nausea or fatigue and feels quite good.  His doctors seem surprised, but we are not quite so surprised.  First, we believe in the power of prayer and in God's desire for each of us to be healed.  We thank pastor Joel O'Steen for his encouraging messages while we have been at MD Anderson in Houston.  Secondly, Matt is taking many nutritional supplements.  Three of them are currently being studied in clinical cancer trials.  I will tell you these.  The first is probiotics, specifically bifidobacteria, a beneficial bacteria that resides in the colon.  It has been shown in studies to inhibit colon cancer cell growth by 10-50%.  He takes approx.  600 billion live units a day (9 pills).  The second is glyconutrients by Mannatech.  It is harvested from the aloe leaf and enables neccessary cell to cell communication and increased stem cell production.  His platelets actually went up during avastin treatments after taking this supplement which is unusual.  The third is Juice Plus, which is fruit and vegetable juice encapsulated.  It supplies antioxidants and enzymes and encourages detoxifying and healing.   Obviously, anything you can do nutritionally will help you detoxify from the chemo, increase health and energy, and help you fight cancer.  When you begin to make any nutritional changes it is very empowering.  You will begin to feel as if you are actively participating in your healing and fighting the cancer.  God bless you. mikk5 Mon, 15 Oct 2007 00:00:00 GMT 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 Snowmom60 Tue, 16 Oct 2007 00:00:00 GMT 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 Life is worth the fight Wed, 17 Oct 2007 00:00:00 GMT 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! Snowmom60 Wed, 17 Oct 2007 00:00:00 GMT 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! njkiwimum Tue, 23 Oct 2007 00:00:00 GMT 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 Snowmom60 Mon, 26 Nov 2007 00:00:00 GMT