Just Finished First Round Of Radiation And Chemo.. Having Problems Eating Please Share You Ideas

Sorry this is so long!

 I was diagnosed July 3rd with rectal cancer. The tumor is only about 8 cm. up into my rectum. They feel confident that they will be able to hook me back up after six months of healing from the surgery.

 I am only 42 so this was a huge unexpected illness. My tumor is 2 cm. and was ulcerated. That is my blessing... because it was ulcerated it bled early. my cancer is the poorly dif. mucus producing adenocarcinoma stage 2. They say it could be in my lymph nodes but they have not found anything to prove that. They did a ct scan and a PET scan which they tell me is the best one.. it shows a lot more and will sometimes show up the lymph nodes but not always.

I just finished radiation and chemo on Wed. The chemo was 24/7 with the pump (5 FU) continueus feed. Please excuse my spelling..  that is one of my struggles these days and I think its maybe the chemo brain I have heard about. who knows...  ;)

 My radiation onc. did tell me if they were to do a biopsy of the tumor now it would likely not show any cancer cells. BUT they still have to do all the other steps because of high reoccuring rates with this type of cancer.

 My CEA levels went from 4.7 in the beginning to 3.7 last week. They say you cannot compare that to anyone elses because there are a LOT of things that factor into that... age, illnesses etc etc.

 They want to give me 6-8 weeks to get to feeling better before they do surgery. They plan to just remove a section of my rectum and colon. I will have a temp. colostemy so that the risk of infection is less and just to let things heal better. Six months later they will hook everything back up and hope it all works. My doc is confident that he can do this. He is a colorectal specialist surgeon. I think it's very important to have doc who is a specialist in this field.

 During those 6mths I will have adjuvent chemo... same way.. continus pump but only for 3 days a week every other week for 4 mths. It will be 5 FU plus another new one called eloxatin. Seems it has a few more side effects than the 5 FU, so I am not sure what to expect.

I do believe the radiation is what was hardest on me. I first must tell you I already had lots of stomach problems for years before the cancer. I have GERD and also IBS with diarrhea. So I was like a loaded gun going into all this.  In the beginining tiredness was the worst sympton and still is. But diarrhea has been difficult but not all that hard to keep under control. I have been lucky on that, I only got dehydrated once and have to have liquids through an IV.Up until a week ago my worst problem was being so tired and also trying to figure out what I could eat. I have had no apetite... Food tastes totally different to me. I get frustrated because I have a cabinet and ref. full of stuff that I thought I could eat and then when I tried I couldn't due to smell or bad taste. Due to the diarrhea I am limited to what I can eat. I haven't had red meat for just over 4 weeks now. It would go right through me. I eat very little and have to force that in. I have lost 11 lbs and for me that's a lot. I am 5'9" and weighed 144 going into this.

 About a week ago I started with severe stomach cramps from the top of my pubic bone to the bottom of my rib cage. I get bloated, my stomach feels tight and swollen... seems some of it is gas but not all of it. It is like my colon and stomach are contracting and spasming. I asked all my docs about this and they say that is not a normal problem with rad. and chemo. So they think the rad. and chemo have caused my IBS to get MUCH worse. They gave me bentyl and lortab. This past Sunday things got really bad and the only thing that would work is taking bentyl every 6   hours along with 2 lortabs... I tried one and it just did ok... with 2 my pain almost completely subsides. I don't have to watch the clock for when to take my meds because my stomach reminds me. I hate taking so much pain meds. all that still doesn't make me real sleepy. I wish I could sleep more.

 I finished chemo and rad. on Wed. and was hoping to see a change by now but nothing has except the bad taste in my mouth is less. I feel worn out all the time. I know this is partially because I am not eating enough. But there are very few foods that don't make my cramping worse or either cause bad diarrhea. I have to make myself eat, and I feel full all the time. I only drink water because everything else tastes bad. I tried ensure but it made my bloating and cramping worse. I am one of the rare few who can't drink ensure. It is lactose free and I should be able to but can't. I think by the time they weigh me on Monday i will have lost a few more lbs.

I read constantly looking for ideas to help me eat but haven't found anything to help. If anyone here has any suggestions please share them with me. I am really getting depressed and frustrated. I am tired of feeling bad but I realize I still have a long way to go.

 I must say that even with all of this as of today I still feel this has yet to be as bad as I was afraid it would be. It's been bad but not horrible. When my stomach cramping gets out of control it's pretty horrible then until I get it back under control with meds. A warm bath and a warm water bottle on my tummy helps as well.

I am glad to have found this DB, no one else understands what I am going through, even the docs and nurses.

 I will beat this and one day be able to say it wasn't so bad. But for now I will just keep trying to find something I can eat and keep looking to God for strength. In the beginning my faith was strong. Unfortunately, all this has worn me down and it is at times difficult for me to focus on God and spend time with Him. I know He will get me through this... I just gotta give it all to Him.

 I wish the best to each of you. We are all connected in a very unfortunate way but we can lean on each other through this all. I will try to post as I progress through this. I hope to hear more of your stories as well.

 Thanks for letting me ramble.

Anita

Anita,

Sorry that you had such a rough time with it.  Every one is different and how they respond, so I can only tell you how I fared, what I ate, things that helped, didn''t, etc.  Hopefully they will be of some use to you.

First of all, I honestly did not do well at all on the pump.  I had no appetite while I was on it and that made them concerned because I was losing weight.  They don't really want you to lose too much weight during radiation because then (this is according to them) the field slightly might shift where your tatoos are, etc. and they simply don't want that to happen. I was also extremely tired in large part because I couldn't sleep well with the pump.  Maybe it was just psychological, but it was not fun!  My onc had suggested in the beginning that I could either do the pump or the oral 5FU and stupid me chose the pump.  So, I changed my mind and went on the oral (Xeloda)  Immediately I got my appetite back although I still had the metallic taste in my mouth.  Since that was from the radiation (at least that is my opinion) it didn't matter how I was getting my 5FU.  Also, I know that I was sleeping better without the pump, so I believe it was a win-win situation.  My onc said & the studies prove that Xeloda is just as effective as infused 5FU and some studies even suggest it is slightly more effective so there was no problem on either end with the switch.

When I was done with my treatments I felt fine about three days after, but my onc warned me that often it actually gets worse before it gets better.  He was right!  You can plan on a good week or two after treatment before you REALLY start to notice an improvement and then it seems to improve in leaps as opposed to baby steps.  I was lucky and took good care of myself during radiation so didn't burn, except for the most important place-my anus.  I slathered a regimen of stuff on me and didn't burn anywhere else, but I assumed that my tush would protect my anal area (boy was I wrong!) so the pain from being burned did come up.  I would highly suggest that right now you start applying cocoa butter (as pure as can be) to help the anal tissue stay moist & supple.  Radiation will dry that tissue out and makes it thin so it gets fissures (little tears) quite easily and to put it mildly they HURT!!!  MAKE SURE THAT WHATEVER YOU PUT ON THAT AREA HAS AS LITTLE ALCOHOL IN IT AS POSSIBLE!  You would be surprised how much alcohol there is in lotions, creams, etc.  I used pure cocoa butter and a product called Johnson & Johnson's SoftLotion 24 Hour liberally and as often as possible.  Once you get a fissure, it is difficult for it to heal so if you can, be proactive and try to avoid them as much as possible.  DO NOT use  hemorrhoid products as they contain witch hazel and or alcohol and these also dry your skin out.  Also stay away from cortizone cream-at least right now.  They will also dry your skin out and that is the last thing you need right now.  At night, skip the underwear.  Healing is the most important thing.

As for the stomach/intestine problem I was able to avoid a lot of the gas/cramping & diarrhea with a product I found at either WalMart or Walgreens.  It is put out by Digestive Advantage and is for Irritable Bowel Syndrome.  I checked with my onc and he approved it.  The chemoradiation is very good at killing cancer cells, unfortunately they also kill all the healthy bacteria in your gut.  Without that you will cramp, bloat, get diarrhea, etc.  and this just puts the healthy bacteria back into your system.  I tried the yogurt approach but you would have to eat soooo much of it and I am just not that much of a yogurt lover.  During treatment, I would take two tablets in the morning and two in the evening.  I still did that for a few weeks after treatment.  It's not magic but it really helped me and a few others I know & the onc said it only made sense.  Worth a try.

One food that REALLY worked for me and I just craved was those Pillsbury lowfat breadsticks that are in the refrigerator section.  You peel open the label and then cook the breadsticks.  We used to call that kind of packaging the crack and smack.  You cracked open the label and then smacked the container on the counter to open it.  Anyway, I would eat those and my stomach would feel full and settled and I had no problems whatsoever for the rest of the day.

Can't remember if you said you had the taste problem, but that will go away after radiation is over.  My rad onc SWORE that it was the chemo causing it and my onc SWORE it was the radiation.  For me, I never had the problem when I was just on the Xeloda (after radiation but before surgery) so I can only assume that it was the radiation that caused it.

Again, this is only my personal opinion, but don't let them rush you into this surgery too soon after radiation.  Wait at least 6 weeks.  Studies have shown that in Europe they tend to wait around 8-10 weeks and they feel that the radiation is still working and those few extra weeks allow your body to heal and all in all just feel better.

Good luck to you.  Hope this helps.  Remember everybody is different and reacts differently to treatments.

Jaynee

Hi Anita,

 

I hope your starting to feel better.  Those lotions that Jaynee told you about have helped me immensely.  They didn't help me to not get the fissures but have helped to keep them at a minimum, between those and sitz bathes I'm doing pretty well.  I alternate them because sometimes one of them works better than the others.  I've noticed the past couple of days the aloe works the best and then I put on cocoa butter, last week the Johnsons and Johnsons worked the best all by iteself.

 

I am sooo lucky, I never had the metallic taste or the loss of appetite.  I did get mouth sores but there's a prescription called saliva or something like that (expensive w/insurance) and it's a miracle worker, as soon as I start getting them I use it and it goes away.  The only problem I have is an occassional nausea but I take compazine and it goes away and tiredness.  I'm thinking this is all to easy, I hope it's working.

 

Good luck and let me know how your surgery goes, mine will be in about 10 weeks.

 

 

Thanks for the tips! My eating is finally getting much better. I actually have an appetite now :) I have lost a total of 16 lbs and not gained any back yet. I think it's because I am still having some diarrhea.. 2 or 3 times a week. I am finally feeling a bit better.... it's been 3 weeks since I finished rad. & Chemo. I go tomorrow to set my surgery date. My Oncologist said they would likely want to do it in 2-3 weeks. I think that's a little too soon..but I'll see what the surgeon says. I am so dreading the colostomy for 6 months and the 4 more months of chemo. BUT I realize there are a lot of people who have to have perm. colostomies and it is still a possibility with me. My tumor is only about 7 cm into my rectum so the surgeon says it will be a close call but he feels confident he can recconnet me after the six months. My oncoligist told me they wait that long on the reconnection because the chemo can keep things from healing properly and they want to give me the best chance possible for having a successful reconnection.

 

thanks again. I wish the best for you as well!

Anita

Hi Anita,

 

I'm so glad your doing better.  I'm doing worse.  More burns and more sores to the butt but I shouldn't complain it's almost over, three more rad. treatments and that's done.  My surgeon is waiting 8 weeks I guess.  I spoke to the nurse today and he'll see me 4 weeks after my rad. is done and then schedule it four weeks out.  I am one who has to have a permanent colostomy, My cancer is right at the anal opening so there won't be any chance to reconnect.  I try and look at the bright side.  I shouldn't be bothered by hemorroids ever again and no bad cases of diarrhea to worry about when snowmobiling or whatever, right!  Anyway, good luck with your surgery, let me know how it is when your done with it alright?

God Bless,

Terry

Anita,

         It’s great to hear you are feeling better! I waited 8 weeks (cooling off period) before I was operated on. There are many good suggestions here for keeping the “burn” down. Being proactive is the ticket. I have a permanent colostomy which I wouldn’t reverse if I could. For me it has become second nature. The new norm!! I was operated on in March of 06 at which time my rectum was removed. The cancer was right on the muscle so I didn’t have an option. Terry’s philosophy is right on!!!!! I pray all is well with you on your journey and that you enjoy the cooling off period as I did! Let me know if I can help in any way.

       God bless..    Dave

Anita,

Please read my reply to Terry concerning 5 FU and fatigue.  I am sure from personal experience that IBS is related to dysbiosis, an intestine   out of balance.  You may want to look at thecandiayeastanswer.com.  This website helped me and my entire family tremendously.  My family has personally treated or complemented traditional medicine with their products for:  IBS, food allergies, vaginal yeast infections, ear infections, ulcers and cancer.

I just had to write to tell you how much I sympathize. I too had the severe stomach cramping and total IBS symptoms...its is no picnic! I researched and asked everyone I knew for help with the eating and I finally decided that this is really the weak link in treatment. It just seems that no one knows and you are pretty much on your own to figure out what you can tolerate. I will say that a nurse gave me a pamphlet on a "low residue" diet and that seemed to verify most of what I had discovered on my own. I'm sure you can get it from your nurses or on the web, but basically it minimizes the amount of insoluable fiber you eat. This was hard for me to get used to because I am normally a "high fiber" kind of gal...had to learn to eat in reverse to what i am used to. When I got really bad, I would almost live on broths and rice noodles (like Ramen noodle type soups). I could also tolerate mashed potatoes with broth and scrambled egg whites and toast. when I was really bad I would drink a protein drink like Ensure to keep my energy up, although I don't like them, they are too sweet for me. My real hope is that you don't give up. You need to eat and it will get better. I am back to eating a wide variety of foods, although I still have to be careful not to overdo the fiber. My very best wishes to you