Anyone! Please help me! I am alone!

vickijune said:

9 year survivor!

Hi.  So sorry about your Mom.  Please tell her that I am a NINE year survivor of ADVANCED primary peritoneal cancer.  During the 9 years since diagnosis, I have had several cancer debulking surgeries (that have included removing 18 inches of my small bowel, a couple of feet of my colon, etc.)   AND  7 years  (84 months!)    of chemo.  AND please let her know that I had  48 months of  Doxil during that 7 years.  I have been told that I MAY have the record for the most Doxil!  WOW...The things that some folks brag about....LOL!!!!  

Please keep reading.  This next part is really great.... I have NOT had any chemo....NO chemo...for the past 18 months and my PET  scan is stable.  

I can't imagine NOT having Doxil.  I am active, I enjoy my life, I am happy, I AM HERE....And yes.... I am so very, very lucky.  

I wish the best for your Mom. Negotiating cancer and chemo can be very scary at first. I can remember how excited and hopeful I was when I first met some long term survivors. 

I hope that my message brings hope to your mother...and to others who may read this column.  I would be happy to share more of  my experiences with your MOther (or with others) if it would be of help, provide hope, etc. 

Hi there your story is inspiring and I've read it about 20 times! It gives me hope and makes me feel a lot more positive

You may have a combination of things.  Hypothyroidism can cause extreme fatigue.  The opposite condition, hyperthyroidism, can cause weight loss.  Abdominal pain can be caused by a number of conditions including celiac disease (best diagnosed by a biopsy during a colonoscopy, but there are also blood tests that sometimes show it).  Abdominal pain can also be caused by ovarian cysts, but they probably would have shown up during your other workups.  I'm not positive about this, but I'm pretty sure that ruptured ovarian cysts can leave some free fluid behind (I used to work in a hospital ER where I had a job reading charts).  Abdominal pain, chronic fatigue, and weight loss can be caused by hemochromatosis, a genetic condition which causes your body to store too much iron. A ferritin test can be done to see how high your iron level is.  The reading should be below 150.  If it's above that, you could have genetic testing done to see if you have the genetic make-up to have this disease.  If you do, treatment is to keep taking blood out of you (often weekly) until your level gets down to normal.  I have this, and I had an MRI to see if any of my organs were damaged by it, which they weren't.  My genetic profile isn't the one that normally causes hemochromatosis, but one that sometimes causes it, and science doesn't know why it sometimes does and sometimes doesn't.  I think my iron ovrerload was caused by  my taking a lot of vitamin C, which causes the body to store iron.   I wasn't diagnosed until after I completed treatment for uterine cancer, and I was still short of breath when my chemo had been over for 3 mos.  Incidentally, the weight loss  from hemochromatosis comes about from liver disease caused by the hemochromatosis.  Maybe that would have shown up in your other tests.  I don't know.  Having your period tends to help hemochromatosis, but when you hit menopause, your iron levels start going up.  Abdominal pain can also be caused by diverticulitis, but that should have shown up in your tests.

My step daughter had the pain with intercourse due to a bad case of endometriosis.  I think fibroids also can cause this.  Probably these would have shown up in your previous tests, though.

Fatigue can be caused by eating too many simple carbohydrates, which make your blood sugar plummet an hour or so after eating these foods.  Complex carbohydrates make your blood sugar go down more slowly.  Whole grains are complex carbohydrates.  White bread, white rice, and many pastas are simple carbohydrates. 

Although I had stage IVb uterine cancer, I never had any weight loss.  I did have abdominal pain occasionally and I was often fatigued after meals.  My diet may have been at least partially the cause of that.  I didn't have any free fluid.  I had a mass show up in my peritoneum on a CT and PET/CT of my abdomen in late May of this year, but my CA-125 remained low.  I had a physical which showed no ascites.  My gyn/onc is having me have a repeat CT next week to see if the mass has grown.  He wasn't even sure that it was cancer.  It it has grown, he'll take it out.  If it hasn't, he'll probably keep an eye on it.  His PA told me it could be a fluid build up from my lymph node removal, even though I'm over four years out from my surgery.

I wish you luck in diagnosing your condition.  I always thought I had something wrong with me, too, and it turned out I did.  I'd thought I had celiac disease and kept getting tested for that since my mother had it.  It wasn't until I started bleeding that I was diagnosed with cancer.