Doc Hints I Quit Treatments After 7 Instead of Standard 12

[JodyB]

I'm new to this forum, but after reading through it, I see there are people here that I have a lot in common with. I had half of my colon removed and all of my right bowel in a reconstruction surgery in May of this year. My tumor was walnut sized, and in my flap, so I have a lot of control issues with my bowels. I'm on a prescription drug, and an Imodium tablet on average 4 or 5 times a day to attempt to control it. The tumor had eaten through the colon wall and cancer was found in 4 of my lymph nodes adjacent to it. I too, have had as many as 20 loose stools in a day, and after a chemo treatment, it drastically worsens. My chemo was on Wednesday, and by Saturday the loose stools would begin and last until Monday. Then they would start on Friday and last until Tuesday. Now they are lasting until the following Wednesday or Thursday. Every time I have chemo, they seem to get worse, and they've reduced my dose of flourouicil twice now.

The meds they've given me help the nausea tremendously, but I still find myself not eating, when I know that in 20 minutes I'm going to have another bowel movement. Don't get me wrong, it has improved dramatically from those early days right after surgery. But because of the diarrhea, and the pain and cramping it causes, my doctor brought up stopping treatments today. He said I had made it past the half way point and that many oncologists are suggesting that 6 is enough anyway. I have very mixed feelings about how wise this is because my cousin died of State 3 colon cancer in October of last year. I trust my doctor implicitly. These people on his staff have been wonder to me and my family. I told the doctor I was willing to continue the treatments no matter how sick they made me, but he said that I also needed to consider the quality of my life, and the chemo has continued to wreck havoc with my white blood count or my blood platelets, or both, and so I have to wait to have the next treatment until they come back up again.

Anybody here been in a similar dilema?

[DulcimerGal]

oh boy Jody - what a dilemma you have.

I am trying to think back to last year when I was on chemo after my surgery and reconnection and the constant bathroom issues....to remember how in the world I got through it...I did and stuck it out through five months of chemo. I remember near the end actually not telling my doc about some of my symptoms as he also had threatened to stop or make me wait longer between sessions. Like you - I hated being told a time frame and then having it amended to something shorter. Why do they do that!

Anyway when I was having all that diarrhea I also took immodium all the time. Did you add fibre pills to soak up the excess water? I had to eat benefibre pills with every meal to slow things down, also ate cheese with every meal. never ate veggies, no fruit except applesauce with rice or tapioca. don't go near milk. No soda, only water. In the off weeks when I got a break I would switch to those Bolthouse farms Green goddess drinks that are full of green vitamins and taste like apple juice in order to clean out my liver. By trial and error I figured out what I could eat and what I absolutely had to stay away from. Keep a diary - write everything down. Don't quit yet - also are you taking iron pills? I had two of those three times a day - they also cause stools to firm up - in fact I still take them.

Hang in there - it will get better. Promise. You may not be able to go 12 rounds - but hopefully can get in a few more.

Hopefully others will post their tips too
Cheers
DulcimerGal

[JodyB]

And that somebody might have some suggestions for me. I appreciate yours very much. I don't know why I did this, but when I started using the prescription, Lomatil, I quit using the Benefiber, so yesterday I started using it again, and I think I'm having some benefits already today. I don't have any iron tablets so will have to go shopping to pick some up and see if it has any effect. I never thought of it before, but you're right, it does have a slightly constipating effect for the average person so maybe it would at least slow things down for me.

Thanks for sharing your experiences with me.

[topazil]

I am sorry to hear of your problems, I have the nausea, compazine helps mostly but if I get into a coughing fit (Yes I smoke and have chronic bronchitis) that's all she wrote, everything comes up, I keep a lined small waste basket by the side of my bed. And yes I have diarrhea which is such a change from after my surgery over a year ago because then I was so constipated I had to manually extract (bleeped as TMI) anyways I haven't started the immodium yet I guess cause I am scared of it going the other way back to the constipation and I fear that more than the diarrhea.

Okay here's one to put a smile on your face. When I was first diagnosed July 2008 I had accepted my death and didn't do chemo or anything, fast forward to Feb 2009 I meet Tom, the greatest love of my life and my "miracle" as I call him. So we talked openly about the cancer and he accepted my decision to do nothing but kinda hinted and kept hinting it would be nice to be around longer, so I started thinking about chemo and the more I thought about it I figured I would probably loose weight and have diarrhea, not want to eat, throw up etc. so in my twisted mind I figured if I put on a lot of weight when it started coming off I wouldn't look so bad and in fact at one point would hit my ideal weight and look damn good (grins) (Tom is 6'0 and could be a linebacker for a football team so i didn't worry about gaining weight (he he he)

September I think it was I go in to see a new Oncologist with Tom, and we decide to start chemo so each time I go in and step on that scale I am like "whooo hoooo lost another 3 lbs, before long I'll be looking hot and you better watch out Tom" and the nurses fall out laughing.

Not to make fun of the side effects or the disease just my own morbid sense of humor, I know my post wasn't really helpful as I just don't have the experiences to help but maybe it put a smile on your face?

((((((((((((Hugs)))))))))))))

P.S I am starting to get some side effects (low white blood cell count, got a shot for it and dang if that didn't hurt like a witch for almost two weeks in the long bones), maybe hand/foot syndrome but I am going to go as far as I can and probably push myself farther as I want to make it to my sixth treatment and get that pet scan and see if ablation or surgery will get rid of any of those horrible c cells left and also if I stop I know I will feel like all I have already gone through has been for nothing. But you are you are I am me and we all must make our own decisions (and who knows being the wimp I am I might tell the Oncologist, that's it I give up no more chemo and how long do I have left at a certain point LOL)

[star]

HI JODY,

If they are stopping the treatments after 6, are they going to do a pet scan on you to see whats happening?? I would insistn that they do and also get a copy of the report and copy of any blood work they do so you can compare each time...So important to be very very proactive ..

Regarding iron pills ,,,, check out google.. cancer and iron ...

Do you take good Multi Vitimin ??

Best Wishes ...Rob

[star]

HI JODY,

If they are stopping the treatments after 6, are they going to do a pet scan on you to see whats happening?? I would insistn that they do and also get a copy of the report and copy of any blood work they do so you can compare each time...So important to be very very proactive ..

Regarding iron pills ,,,, check out google.. cancer and iron ...

Do you take good Multi Vitimin ??

Best Wishes ...Rob

[jcondit]

I am in a very similar situation. I am now at 14 of 16 chemo treatments and the symptoms have only magnified. The doctor has said that due to the side effects you have to consider the quality of life. However I had to go with my feelings. I took her medical advice and consider it heavily. I also saw my CEA going down after each treatment. Now I have a permanent ilostomy bag so going to the bathroom isn't an issue but other side effects are. I am young and a fighter. I will do everything and anything to do what I can to beat this disease. But I also know that there isn't any known combinations of medicines that will cure everybody. However, I am willing to endure and maybe suffer a little while longer to beat this disease. I will continue to fight this until the doctor says the chemo is ineffective or the doctor says the chemo itself is killing me. Stay strong and follow your decision no matter what it is.

[JodyB]

For a bag. I didn't have one. Then began the battle with watery stools, sometimes 20 a day. I've come a long way since then, but it's never been easy, weeks of chemo make it worse, and I need lots of meds. The oxycodone that was supposed to make me constipated never did. So I only take them when I'm desperate because they are so addictive.

When I arrived for my treatment today, I told both the Resident Doctor and my Oncology Doctor that I came for a treatment and we will see how it goes. It was treatment number 8 of the FOLFOX, and treatment number 15 of the Cetuximab. The doctors have reduced the amount of Flourouricil I'm gettint to see if that improves things any, and I have my fingers crossed.

Because I'm in a clinical trial study, if we majorly have to change my treatment plan, that will mean I have to voluntarilly leave the clinical trial, and I will not get the Cetuximab or Herbitux, and that woul discourage me, so I've told my husband to quit bringing up the idea of my quitting. I'll just bite the bullet and suffer it out.

We will see. I'm very fortunate that the Emend and the Zofran take care of most of my nausea. Occasionally I'll have sinus drainage and that can stir it up early in the morning, but other than that, I've truly been blessed about the upset stomach thing, whew hoo! I try not to belly-ache about the things that are really tough.

Hang in there. You are close to the finish line. We will pray you make it and get all the chemo they think you need for your treatment plan, and then hopefully you will slowly find your strength and health returning. You're doing good, you're doing good, you're doing good. Just believe that.