Recently Diagnosed With Stage Iv

Hi, I was diagnosed on Apr. 22 after being taken to the emergency room for bad abdominal pain and frequent vomiting. I was diagnosed with stage IV that has spread to my liver. I'll be 40 years old next month and this is so hard to deal with, although I was pretty depressed before all this happened, so now I'm not doing to good at all.

 The doctor operated a few days after I was admitted and removed what he could, I now have a ostomy bag which I hate, I started to through it out each time instead of cleaning it now, and that's helping because it was making me gag too much and feel worse. I have to wait untill my surgery heals and we will start chemotherapy around the beginning of June. I'm so scared it's going to make me feel worse. I don't seem to want  to eat much, and i'm very low on iron, what do I do? I don't want to make myself eat something I don't want or I fear I'll get sick, I'm also a vegetarian and only eat shellfish. I can't eat meat, I tried turkey the other day and could only take a few bites. It's been twenty years since I ate meat. I'm taking iron pills now but they don't make me feel that great and one day I threw up shortly after taking one. I haven't been vomiting much since I've been home, about a month now until last night, I did after I ate and that scared me. Now, I'm afraid to eat food againt. Sometimes I have an appetite and sometimes I don't, it's mainly for cold stuff, such as ice popsicles, yogurt, italian ice, but not food that often.

My other symptoms are feeling tired alot, lower back pain, leg swelling with some pain and some abdominal pain and fatigue.

Right now I take oxycodone every 4-6 hours for pain, vitamin c, centrum and an iron pill (ferrus) ?

I just wanted to hear from any one who is going through these same symptoms and to please tell me there is still hope and I will feel better. I'm very scared of starting chemo too and what it will do to me.

You will get help from people on this site concerning diet, etc.  I would  suggest you meet with your Oncologist and also contact the dietition at your hospital or treatment center and get info and advice in these matters.  My hospital has provided me with all the info that you have requested.  This is great and the follow up during and after infusion is aligned with my specific needs.

Hi.

 I know it is easy to say not to be worry, especially if I am not a patient. But, don't give up. If you read posts on this board you will see that the most important healing factor is faith, optimism and fighting attitude.

 A word on iron deficit. It is something normal for patients like you. My dad when he was diagnosed (October last year) has sever iron deficiency. But taking supplements did not help and this also confirmed his doctor, since the intake is not problem, the problem is absorbtion. The chemotherapy did helped him (so far) in the first line to reduce tumors in liver (he was not in surgery yet) and this improved his iron levels, he gained weight etc.

Do not be afraid of chemo, take it as a cure and look forward to it. There are also known psyhological side effects of chemo. Some patients are vomiting before getting it, because they are afraid. There are plenty of advice which will help you to properly prepare before you start and will reduce side effects.

Live each day. I wish you all the best and never give up. There is always a hope.

Mojca

 

On 5/26/2008 mary57 wrote:

Hi, I was diagnosed on Apr. 22 after being taken to the emergency room for bad abdominal pain and frequent vomiting. I was diagnosed with stage IV that has spread to my liver. I'll be 40 years old next month and this is so hard to deal with, although I was pretty depressed before all this happened, so now I'm not doing to good at all.

 The doctor operated a few days after I was admitted and removed what he could, I now have a ostomy bag which I hate, I started to through it out each time instead of cleaning it now, and that's helping because it was making me gag too much and feel worse. I have to wait untill my surgery heals and we will start chemotherapy around the beginning of June. I'm so scared it's going to make me feel worse. I don't seem to want  to eat much, and i'm very low on iron, what do I do? I don't want to make myself eat something I don't want or I fear I'll get sick, I'm also a vegetarian and only eat shellfish. I can't eat meat, I tried turkey the other day and could only take a few bites. It's been twenty years since I ate meat. I'm taking iron pills now but they don't make me feel that great and one day I threw up shortly after taking one. I haven't been vomiting much since I've been home, about a month now until last night, I did after I ate and that scared me. Now, I'm afraid to eat food againt. Sometimes I have an appetite and sometimes I don't, it's mainly for cold stuff, such as ice popsicles, yogurt, italian ice, but not food that often.

My other symptoms are feeling tired alot, lower back pain, leg swelling with some pain and some abdominal pain and fatigue.

Right now I take oxycodone every 4-6 hours for pain, vitamin c, centrum and an iron pill (ferrus) ?

I just wanted to hear from any one who is going through these same symptoms and to please tell me there is still hope and I will feel better. I'm very scared of starting chemo too and what it will do to me.

Hello you, just a quick note to say hang in there.  Spatone is a relatively easy iron supplement to take - its liquid and you add it to cranberry or orange juice etc.

  my mum has stage iv liver cancer and her iron levels were at 3 a few months ago (should be 25). doc has been giving her weekly iv supplements which you can have with your chemo....so ask your doc.  prior to her starting chemo she was nauseous all the time and had this metallic taste in her mouth....all that is gone now and her appetite has improved a lot.  all she has from the chemo is tiredness.  my mum used never eat pizzas but for some reason she liked them a lot while on chemo....also ambrosia creamed rice etc.  she has almost gone off meat completely now...... most people with stage IV cancer find it easy to eat a good brekkie but appetite gets worse during the day......so aim to have a big brekkie and then some drinks like complan or build up during the day if you can't tolerate anything..   as other posters have said, chemo should improve your quality of life and not make it worse.......  i know what you are going through is tough but it should get better....

Hi,

So sorry for what you are going through.  If it helps, many of us have been there, too, and can help you through this.

When you start chemo (probably Folfox which includes oxaliplatin) you will experience cold sensitivity and not be able to eat or drink cold things, so enjoy them now.  You will probably receive a suggested diet plan from your oncology nurses.  Even when you're not hungry try to eat small portions throughout the day and keep liquids nearby at all times because it is very important to drink.  While in treatment I preferred soft foods such as mashed potatoes, rice with cream sauce, soups, cream of wheat (which is a good source of iron), etc.  There are also jello cups with fruit and pudding cups that do not require refrigeration.  On the days between treatments my appetite was good.

Let me know if I can help you with more of my experiences or encouragement.  Good luck.

Lynn 

 

When my husband went thru chemo, all he could tolerate was Boost.Also, try Pedialite, which is the liquid they give children.  This helped his energy levels.  There are also meds for the nausau that the doctor can prescribe to help.  Don't be afraid to ask questions.  You have to play an active roll in your recovery.  Keep fighting.

Mary,

I forgot to add, ask your dr. about anti-nausea medication.  There are good prescription drugs that will help.  I assume they will give you something in the iv before each treatment to prevent nausea.  I also took phenegrine at home (spelling?) and it worked great.  It made me sleep but that was ok.

Lynn

Thank you so much everyone for your replys. I really appreciate your help and advice. It certainly has given me more hope. May I ask, what stage are all of and how long have you had it now?

Mary57,

I was stage iv in 1992 at age 40.  I was expected to live a maximum of 3 years.  It is 16 years later, I am 56, and have had no recurrence.  I had surgery and 6 months of chemo.  I did not have any scans and don't know why.  Maybe scans were not the protocol back then.  I had regular appointments with the oncologist every 3, then 4, then 6 months until I finally saw him only yearly.  I had colonoscopies every year, then every 2 years and finally had them routinely every 3 years. 

Two years ago I was diagnosed with small bowel cancer.  It was not mets or a recurrence.  It was a 2nd primary.  Small bowel cancer is rare.  I had surgery and 6 months of Folfox.  This site does not have a category for small bowel cancer so I started participating in the colon cancer category because chemo is the same and also I thought I could encourage those with colon cancer since I survived it.

Good luck to you.  I hope my colon cancer success story helped.  I'm still working on surviving small bowel cancer.  I'm having surgery soon to remove some yet to be determined thing from my small intestines.  Anyone with extra prayers lying around send them this way!

Lynn       

Stage 3b and fighting like hell.  Re-occured in Dec 07, 3 x 5 centimeter tumor in pelvic area (lymph node that should have been taken out during resection in 2005).   Three chemos, radiation, two open surgeries , many scans, doctors visits, emergency rooms fighting side effects.  My scan in Jan this year showed the tumor gone, history!!! Just finished folfox, etc today - designed treatment plan to get rid of microscopic cells that have been floating around.  NEVER EVER GIVE UP - FIGHT, FIGHT. FIGHT. I have stayed close to my friends, family and my Docs and remained positive.  I'm 71 and my wife and I will be off camping and fishing again in  a month.  Good Luck and God Bless All !!!