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5 year NED and now local recurrence

jane283
Posts: 32
Joined: Feb 2013

My dad is 62,5 years ago he had a colorectal cancer dx in 2008,had a surgery that gave him the infamous colostomy bag and 8 rounds of caplox and 30 radiations later,fought back the disease and his weight and became healthy.

Dad loves to cook food,always passionate about lot of things in life..believes in hard work and loves people.

Just when we had forgotten about it all,and with regular 3 month CT's,annual PET and CEA's every month,the cancer came back in the rectum.

He had  pain in the lower back his VIT d was 3. :(

tumor is now mucinos and is in the rectum (of whatever is left because his rectum and part of colon were resected)...he complains of a radiating pain and heaviness near the stoma.Its 4cms so cannot be resected and needs to have chemo before.His max dosage of radation was done in 2008 and docs dont want to radiate him further.. (not sure about this)

he is now on folfiri,KRAS mutant so no antibodies.But his wbc is 900 and he isnt able to eat anything because of the sores,fatigue and rectal pain...

there are 3 more chemos to go..and I'm not sure if he will eb able to take it...

I find it hard to see him unable to eat a spoonful of food...the same perosn who ahd fed so many people with thier favourites...

I find this forum extremely useful and tell him about teh experiences i read everyday and give him hope of survival...

please advice...if the wbc's come back to normal and if he would be able to take the remaining 3 cycles...

 

Nana b's picture
Nana b
Posts: 2707
Joined: May 2009

i can't advice but prayers going your way. So sorry to read this. 

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

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.

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

I'm sorry to hear about your Dad's reoccurrence, d@mn this cancer.

i can only suggest things like Boost and carnation instant breakfast drinks to keep protein and help his body get some nutrition.

I wish I had more and better advice.

Winter Marie

annalexandria's picture
annalexandria
Posts: 2172
Joined: Oct 2011

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

sdp's picture
sdp
Posts: 137
Joined: Jan 2012

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 ?

jane283
Posts: 32
Joined: Feb 2013

Thanks annlexandria..please tell em the name of the supplement..

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Your dad should be able to take Avastin, even with a KRAS mutation (I have a KRAS mutant and am on avastin).  Erbitux will not help him (or me).  Best of luck...

Tedd

jane283
Posts: 32
Joined: Feb 2013

Thank you..I hope that they can use some antibodies and shrink the tumor...

counts are slowly increasing because of antibiotics now...

jane283
Posts: 32
Joined: Feb 2013

Thanks..dad was able to use avastin..they are going to start that from the next chemo cycle...

any adverse side effects that we must be prepared for...

Is it advisable to scan after 50% chemo is done to check if the chemo really is working  just a thought..

the doc just suggested nausea,vomiting...and only 5% chance of serious effects like intestinal perforation etc..

steved
Posts: 836
Joined: Apr 2004

Local recurrence is remarkably rare here. Mine happened after seven years and was on the right side of the pelvis making resection generally not possibleaccording to all the surgeons I saw. However i did finally have an operation but included a very high amputation of my right leg and permanent urostomy and colostomy- not an op I would recommend for many but does show that it may be worth getting a number of surgical opinions esp if the tumour is shrunk by cancer. I also had more radiotherapy having had it before which again some once don't like as it increases the risk of complications but gain may shrink the tumour to the point where a surgeon may consider it operable

The good stuff is the Timor must be slow growing if they think it is the same as the original as it has been lurking for five years and it's genetics or make up mean it doesn't tend to spread into the blood or lymph unlike many peoples tumours which do this more quickly. This does mean it is worth chasing treatment options but also means if itscan be controlled with chemo he may live for a good time.

 

Any questions pleAse do ask,

Steve

jane283
Posts: 32
Joined: Feb 2013

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?

steved
Posts: 836
Joined: Apr 2004

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

jane283
Posts: 32
Joined: Feb 2013

Hey Steved...

Avastin did not shrink the tumor..it showed a marginal response...and now we are out of options as the surgeon is clear he does not want to operate...

no more chemo too coz the avston seemed to have caused a GI perforation....

the only thing we are planning to explore now is cyber knife.I 'm not sure why the docs dont want to perform any surgery..maybe high morbidity post op?

Any ideas???

steved
Posts: 836
Joined: Apr 2004

I am not hugely surprised simply becausepelvic recurrence is complex due to the other things that are in the pelvis. I do think it is worth getting more than one opinion and ensure at least one is from a specialist who particularly deals withpelvic recurrence- weonly have three such surgeons here in the uk so they are rare too. Also afurther opinion about other treatments is also a consideration. I had radio on first occurrence and my oncologist didn't want to give more but after a second opinion took the risk and did it. There are risks of this as thetissues are weakened by the first dose , but when you are desperate risks become okay. Other chemos and trials may be an option too. Depends partly how aggressive your dad wants to be.

I hope things improve but also that if not you are able to focus on ensuring quality of time with your dad is the focus and you fiand pleasure  in your time together. It is a crap disease but it doesn't have to rob us of all pleasure. Keep in touch and feelfree to email me as I read the forums less these days,

Steve

jane283
Posts: 32
Joined: Feb 2013

I know you gave me hope few months ago....

I hope you do well and fight as much as you can..

You will be in our prayers...good luck

LOUSWIFT
Posts: 359
Joined: Aug 2006

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 bitterYell 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)Wink 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
Posts: 32
Joined: Feb 2013

:) thank you for sharing your experience...

I agree with you about the time doctors need to spend on you...and I will beware of researchers in future...

but yes,my dad is open to trying anything including tea leaves from soursop to noni juice to any alternative medicine...as an add on to chemo...

anything that will not make him sick or puke...

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

so he is interested in alternatives to conventional, well maybe read my messy blog, its full of interesting stuff.

my in operable tumours have been cleaned up by my immune system with lots of supportive therapies and of course god.

hugs,

pete

 ps his story so sad highlights the weakness in current oncological practice, so your ned, do nothing else. his story makes my obsessive approach to staying NED seem completely worthwhile. thank you for sharing it here. his tragic recurrence may not terminal, only god knows whats impossible, not our doctors. have faith and hope. 

i keep all of us in my prayers, especially me. if i can stay clear then all my crazy ways, may well with the benefit of time be proven to be simply life saving. i pray this is the case for those willing to embrace an obsessive regime that has curative potential. if i can help save a few thousand lives, i might mitagate this survivor guilt, but its a light burden to carry.

see the discussion on colonchat.net for the latest in alternative colorectal therapies.

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