HELP- I feel I cannot handle it anymore, feel dying

[latina89]

I´m so sorry for always coming with this depressing posts. It´s just that I don´t have anywhere else to vent, I mean I can talk to my family but I know you guys can understand me.

As I said in my last post, I´m 26, was diagnosed at 25, a bit more than a year ago, 3 days after my birthday (yay). That time they removed a piece of my colon and I started chemo a couple of weeks later (Folfox). During that time the CT showed that the cancer had already spread to other organs (the surgeons did not notice in the first surgery don´t know how).

The main issue was a tumor in my uterus which was then removed in another surgery along with one of my ovaries, my uterus of course and some nodes I think. The most horrible part was that it was an emergency surgery as my doctors took too long to properly plan my surgery and I had a blockage (yes, the tumor in the colon was back! Even thought the PET had showed nothing) so I ended up with a colostomy (temporarily) which was a big shock for me.

At that time I was “cancer free”, macroscopically speaking. They sent me to radiotherapy for like 25 sessions and I was getting Xeloda at the same time. I finished my radio at the beginning of January 2014.

I was working and living my life normally, I had even adapted to the freaking bag, and on a break waiting for my maintenance chemo when I had another blockage which ended in another surgery. Yes, the cancer is back.

But what really brings me here is the fact that in my last surgery they removed a part of my small bowel and since then I have been having loose, literally liquid stools all the time. I cannot do anything, my life goes around it. I cannot absorb food or liquids so I´m always in deshydratation (now I always have to get IV fluids) and I´ve lost almost 40lbs in less than 2 months (I´m literally in my bones).

Anything seems to works, tried all the typical meds, the shots and it´s like my doctors don´t care enough. I feel I´m dying and I feel so weak I feel I want to die, soon and end with this now. I don´t know what to do, I´m supposed to start chemo again (Folfiri and Erbitux) next week but how on earth I will handle that being so weak. I´m so depressed that I don´t want any chemo but my cancer is already starting to bother, it hurts in the tummy and its super bloated .

[bjl]

I'm so sorry to hear that treatment is so hellish right now.

Please let your oncologist know EXACTLY how terrible things are right now. It sounds like your symptoms are absolutely not under control and that is not okay. There has to be something they can do to make you feel better asap.

[janklo]

Gosh I'm sorry this has happened. I was just going to say, my daughter had her whole colon removed and a couple chunks of small bowel. After that she did have frequent (several times a day) loose stools, but she was able to get back to normal life. She ate a lot of chicken, potatos and smoothies. You can buy protein powder and put it in your food, like in mashed potatos and fruit smoothies to help you gain weight. (She lost weight too.) I would not eat any leafy veggies, like lettuce, those can mess you up. Maybe others will have ideas of what to eat, but I think diet could help so you can get fixed up and leave the house. Good luck!

[laneylou]

I am so sorry that you are having a hard time. I agree with the others who have said that you should tell your oncologist exactly how bad it is for you so they can help.

About the liquid stools all the time - if you had a certain section of the small bowel removed (it's called the terminal ileum), there is a possibility the diarrhea is due to something called bile acid malabsorption. When you eat, the gallbladder releases bile to help you digest fat. Normally whatever isn't needed is reabsorbed by the terminal ileum - but if it isn't, the bile acids can get into the colon and irritate it and cause diarrhea.

This happened to me - my surgeon thinks because of radiation damage to the small bowel. I was having horrible liquid diarrhea and urgency every single time I ate anything. I was given what's called a bile acid sequestrant - first cholestyramine (which is a powder you mix into a drink - brand name Prevalite or Questran) and then colesevelam (a much easier to take pill - brand name Welchol). With the Welchol every morning the diarrhea is gone. I forgot to take it the other day and then when I ate lunch I remembered it really quick as I ended up running to the toilet for the first time in a long while!

You may want to talk to your surgeon or gastroenterologist about whether you may be suffering from bile acid diarrhea - my oncologist didn't think about it. There isn't a test for it - basically they give you the Prevalite or Welchol and if it works, they figure that's what you have.

Vitamin B12 is also absorbed in the terminal ileum, so you might also want to get your B12 levels checked (mine were also low). It is very important for your energy levels and nerve health especially if you've had FOLFOX.

I will be thinking of you and sending good thoughts for you to feel better!

[karguy]

I'm sorry you are having such a hard time.I'm working on my 5th tumor,and it sounds like I'm doing better then you are.I think you should get an opinion from another doctor,or light a fire under this one.My first time with chemo,and radiation I lost 60 pounds.Right now this liver tumor is kicking my butt,but I am drinking insure every day and that is helping but I can only eat one regular meal a day.The doctor said I can live on the insure if I have to for a short time.I hope this helps,and we are here anytime you need to vent.Good luck.

[exaussie]

Sorry its so hard. How are you feeling now?

[Mommato4boys]

I'm sorry that you're feeling so bad. I hope you have a friend that you can call to talk about your feelings. Please call your oncologist tomorrow and ask for the nurse and tell her how you feel. The nurse can speak to your doctor and then get you in for an appointment. There are hard, bad days, but when you feel better physically, you will feel happier and stronger. Prayers being sent your way.
Debbie

[pfCml73183]

Latina,
I hope things are going better for you.
Please ask your onc or someone on your team for advice. There is something going on they need to adress.
Look for a support group in your area. It really helps to talk to people going through similar experiences.
God bless you and stay strong, Celeste.

[livingbyfaith]

Try to get another opinion. Sometimes doctors are either too busy or just quit on a patient, a new doctor can have all new ideas. God bless.