5 year NED and now local recurrence

I'm sorry

I'm sorry to hear that the cancer came back.My first round was in 2008,and I was told that they can only do radiation one time.Mine came back in 2011,but to my liver.It is very hard to eat when you get that sick.What I did the second time was eat mainly fruit,and vegetables,that helped alot.When my blood count was low they would just wait untill they came back up,and continue the chemo.I did folfox,oxyplaton,5fu ,avastin,and they worked,the tumor shrank.I also had a hard time eating anything with seasoning.I also have a colostomy from the first time.Good luck.

I lived on milkshakes,

when I was in treatment.  My husband would make them out of ice cream, with fresh berries and some protein powder.  You could do chocolate too, if your dad likes that.  Is he unable to eat because of nausea?  Concerning the WBC issue, there is an alternative product from India that is supposed to help with WBC.  I used it when mine dropped.  It brought it up (or it came up on its own, not sure which) within a couple of weeks.  If you want the name, let me know and I'll get it from my naturopath.  It's available at stores that sell herbal supplements, not particularly expensive.  AA

annalexandria said:

I lived on milkshakes,

when I was in treatment.  My husband would make them out of ice cream, with fresh berries and some protein powder.  You could do chocolate too, if your dad likes that.  Is he unable to eat because of nausea?  Concerning the WBC issue, there is an alternative product from India that is supposed to help with WBC.  I used it when mine dropped.  It brought it up (or it came up on its own, not sure which) within a couple of weeks.  If you want the name, let me know and I'll get it from my naturopath.  It's available at stores that sell herbal supplements, not particularly expensive.  AA

Alternate supplement for boosting WbC
Can you pl post the name of the Indian supplement for boosting the WBC .

Is it ashwagandha by any chance ? What is the dosage that needs to be taken ?

I did pretty much the same

In 2005 I had my first fight with Rectal cancer the usual radiation/chemo/surgery/chemo and the damage and bad stuff that accompanies chemo. I did the good health thing drink this, eat that enough oatmeal to float a boat; anti this and that. I lost 43 lbs from 293 to @250. Then nearly five years later in the asending colon near the  transverse a new colon cancer. Anyway no radiation this time but surgery followed by 12 treatment of Folfox. Nasty stuff with bad side effects and damage. My Onc ignored reported problems like Ascites in my abdomen during the treatment. He did the usual five minutes with me to acquire that BMW payment and see ya next time. I know a little bitter Anyway NED in March 2011 CEA less than 1 scans all clear. I was cleared to drive to Florida to see our grand daughter being born and stay to help out with the kids. After the FOlfox I really couldn't eat anything mostly because everything tasted like puke. I was living on Gummy bears; Ensure; and orange juice. I lost another 35 pounds. The ascite didn't go away as my ONC said and I became swollen to over 52 inches in my abdomen. The pain was so bad I had to go to a ER at Gulf Breeze near Pensacola (avoid Florida Hospitals if you can) after a couple of hours of extreme pain I got a shot of morphine which took care of the pain. I thought a paracentesis  (Ascites removal via catheter) and I would be on my way. I was as wrong. Anyway 10 days in Intensive Care followed by 24 days in the Hospital where they could not figure out what was wrong with me; low unstable BP; huge weight loss from 214 to 149. Anything and everything I ate was vomited immediately; diarrhea so bad they had to insert a tube in my butt (they could change my diapers fast enought); foley tube; kidney failure; being fed via IV: a lot of pain medications. I couldn't even sit up anymore. They flew my daughter down to be there for my death. Now here is the connection with your Dad not eating. It didn't matter what kind of food they brought; heck they'd go to McDonalds for me but I couldn't keep anything down as with your Dad I could not eat. Then one night a Filipino Nurse was assigned to me. Unlike the other night nurses who hated me for my problems: the vomiting and diarrhea she would take care of me and watch TV and talk with me. One night she brought in a small bag of peanut butter filled crackers maybe six and 2% milk. I managed to eat and retain two crackers that night and half a glass of milk which I did not vomit. Over time it went to two full packs of crackers and a full glass of milk. Then she added a small cup of ice cream. Everyone was shocked after about a week that I ate a bowl of Rice Crispys for breakfast. Oh and the doctors discovered a miracle cure for diarreha called immodem. Three tabs and my problem was fixed after three weeks on misery. Anyway things returned to normal after 5 more paracentesis. Have Dad just find something he can nibble away at and let it expand from there. The 8 doctors who randomedly showed up to "consult" as one doc would call another to "consult" (I guess the word spread through the medical community about a real  billing opportunity) Anyway after all the consulting was done 6 voted that I had liver cancer and two said chemo- induced chirrosis. It was chemo-induced chirrhosis. They gave me the news by walking into my room and saying you may need a liver transplant. I was stunned since no one had informed me what was wrong. Of course they didn't want me to return to Michigan and came up with physical theraphy since medically I could be released but not without physical therpahy's okay then I could leave. Heck walk I could not sit up without help. Anyway I couldn't  walk but could ride a exercise bike. They said okay if you can ride a mile on the bike we'll dischsarge you. I did and headed home spaced out on pain pill which was good since my wife drove us 1600 miles OMG. My point regarding chemo... it has sentenced me to death possibly in the next few years. I found out that my onc only insisted on the Folfox because it is procedure and it should have been stopped after treatment 7 not the full 12 to save my liver. There were several flaws in all this; First was my fault I trusted doctors. My ONC was the department head and a brillant researcher.  But he is one of those doctors who care more for the research and less about his patients. Thus very little time spent with patients and ignoring bad symptoms. His stature intimidated PA's and other doctors when they saw what he did not so they said nothing. It turns out the Folfox apparently missed a few of those pesky colon cancer cells and they latched onto my liver about six months ago. The Folfox and surgeries gave me life they say but it cost any quality of life. I had hand and foot synrome so bad that ten years later my feet kill me to walk very far but with the exception of my finger-tips the pain in my hands has stopped. I have nerve damage in my legs that will wake me up at night and of course I am permanently teather to a bathroom so sporting events; weddings; family stuff a big problem. The good news with the liver cancer a RFA was performed and they fried it away. So currently NED with only a 50% chance of it returning within a year. So scans every three months. So after all this sad saga here's my advice;

He should make the decision if any more chemo is worth the damage; the suffering; the impact on your family. With chemo-induced cirrhosis I can not do anymore chemo not that I would ever again.

Never ever trust your doctors. Yes there are many that are outstanding but their are many that operate under the premise that if you die there is always and I mean always another billing AKA cancer patient to come along. Doctor time is more valuable then your time. This is how I judge them; how oftenand how long do they actually see you or is it a PA; if you have questions like your last blood tests or scans and they have to flip through your file or will get back to you. Never let them direct your medical care you do it.

Chemo is not always neccessary and may not work at all but only delay or cause more uneccessary damage.

You find what works for you. If you loved a Big Mac but can't choke them down try everything until there is something you can eat. Try something you hate like crackers with peanut spread or ketup; green peper whatever don't stop looking. It might get you down the path to eating again.

Finally, keep looking for procedures you never were offered or maybe called experimental. As my freind Jon on this site would advocate drink some tree bark or chew some brussel sprouts under a full moon as I made fun of his opinions in the pass I have leanred that I was the one who was wroing to exclude anything that works maybe better for you than someone else so find it. The prevailing medical thinking is not always the correct one. That's why they call it opinion. Hope is always there but never leave anything to chance or the limitations your doctors may have.

I know long boring read but on this site you get experience from those that have been there. No one knows better since the sharing of information is world wide and not just some medical journal your doctor might have read.

Best of health Take Care Lou

jane283 said:

tumor shrinking

What percentage does the tumor generally shrink to..for it to be operable?

I knwo everyones case is different..

You got a urostomy even when the tumour shrank after chemo and radiation?

There is no solid rule about how much a tumour must shrink as depends on the reason why it isn't operable which is the question to ask. Mine wasn't operable b
Y the normal methods because it was on the side of the pelvis pressing on nerves that supply the leg andresection would damage these so the aim was to shrink it so it wasn't pressing on these. The common op for rectal recurrence is a pelvic exenteration which clears much of the pelic organs including the prostate and bladder- hence the need for a urostomy. It is most likely to be possible if the recurrences away from the side walls of the pelvis but different surgeons have different levels of experience with this fairly rare operation. It is worth ensuring you have an opinion from someone who does these ops regularly (here in the uk that meant only three surgeons).
Anyway, let us know how it goes and keep asking the questions,
Steve