NEWLY DIAGNOSED STAGE 3-C COLON CANCER

[reddogg634]

Hello.
I was recently diagnosed with Colon Cancer Stage 3 Level C. 4 tumors were found all over my colon. It had spread to many lymph nodes. I had surgery and the Surgeon did a pretty "radical surgery" (his words) and removed all but 4" of my colon and removed a "crud load" of lymph nodes. The Dr. stated he was able to remove all signs of the cancer. Due to my stage, the Dr. said I needed Chemo. I went last week to see a oncologist for the first time not knowing what to expect. I was pretty scared. I have a family HX of colon cancer. My mother had it and a brother. Both had surgery and resection of their colon and only the brother had some "preventative" chemo. He was a Stage 2. Both mom and brother beat it. However, neither was as advanced as mine. Anyway, so I go see this oncologist last week and left their perplexed. I went there expecting him to "shoot me straight" and tell me some hard facts like chemo is gonna suck and I'm gonna get really sick and tired and even with chemo, my chances of survival are only xxx %. Instead, all I got from this guy was "rainbows and roses!!" He spent the first 5 minutes telling me the great thing about my particular cancer is I have this thing called: Acquired Methylation of MLH-1 Gene Promoter (presumably some genetic thing) and how this is "good" news bec they cant treat any tumor growth with some awesome new cutting edge "anti-viral" meds that work great at killing my specific type of tumor, blah blah blah. Anyway, So I'm like "So...that's good news then? So, does that mean we can use some cutting edge genomic designer chemo drugs that will target these hidden cancer cells in my body and the chemo will just kill those cancer cells and not my good cells?" The Dr. was like ahh No, you don't need any treatment like that right now. Your no where needing that. So I'm like very confused at this point and I'm thinking ahh, why then are you saying all this if we cant treat me with this great stuff now?? Anyway, before I was able to ask him to elaborate on this, he changes the subject to the type of Chemo therapy we need to get me on right now. So he proceeds to tell me he wants to do 18 weeks of chemo on me alternating every other week using 3 different chemo drugs (I think one was that Fofax or whatever its called). Anyway, he said he wants to install a central line and I would go every other week for treatment. So I expressed to the Oncologist my worries about friends that did chemo and how 2 died from the treatment itself (one after only 3 weeks on chemo), the other quit after 3 months cause he got soo sick and was bleeding out his butt and his gum. To this day, he claims the chemo ruined his kidneys and now he fights to not have to go on dialysis!! Another friend took chemo and also claimed their kidneys are now messed up from it!! Anyway, so I'm not real fond of starting 18 weeks of Chemo after all this!! I do HORRIBLE NAUSEOUS!!! You can make me weak and tired and in pain and I'll struggle through. However, you get me nauseous and IM OUT!! I'll just quit all together and stop functioning. I HATE getting nauseous. I wont do merry go rounds, roller coasters, etc.. just to prevent getting nauseous. So I tell my surgeon all this and you know what he says? No. No. I think your gonna do great and have NO problems!!?? And he didn't even respond to my questions about my friends who died or quit chemo bec they got so sick and claimed it messed up their kidneys. All this Oncologist did was act like everything was gonna be great for me and I was gonna have no problems on chemo and no problems overall and I was gonna come out this awesome!!!! Anyway, I left the office perplexed and thinking this guys was blowing a lot of hot air up my butt and not being straight with me??? I am now more confused by his totally all positive attitude about my situation. ok. Please give me your opinions. I am so lost and confused now. I'm thinking about going to MD Anderson and trying to get a 2nd opinion before beginning any treatment. I'm 3 weeks removed from surgery. Here are some personal details about me:
I am a 45 year old male.
I am a bodybuilder and have spent 30 years in the gym this year.
I am also a Firefighter with San Antonio going on 18 years.
I normally weigh 250lbs (mostly muscle), 6' 1" tall.
After surgery, and no appetite for almost 2 weeks, I lost 15lbs already. My appetite is back but still have not put any weight back on.
I'm already back in the gym working out lightly and my abdomen feels great. I'm avoiding any abdominal exercises.

QUESTIONS I HAVE:
1) I'm scared about getting sick (nauseous) on chemo and losing my appetite and getting even smaller (losing more weight). I have spent 30 years in the gym building muscle and now I don't want to lose all that by going on chemo. I know to some people this may not be a big deal or should not be my priority, but remember, bodybuilding has been my life and what I live for. So its extremely important to me to not lose all I have gained.
2) Are there any guaranteed ways to prevent getting sick and nauseous and losing my appetite while on this poison?
3) the Oncologist wants to install a "central line" in me for the chemo. I don't want anything put in me that would prevent me from pumping Iron specifically, doing bench press, curls, military press, etc. I did some research and read about something called a "portacath". This device seems to allow me to keep working out like I need to as its under the skin and nothing is exposed or coming out of your chest like lines hanging down your chest. Is this something I should ask for instead of the normal central line with IV lines hanging out of your chest?
4) What is this "Acquired Methylation of MLH-1 gene promoter" the oncologist seemed to get all excited about when I first met him? How is this something that is really good for me as he said?
5) Is it possible my prognosis is as positive as this oncologist seemed to think it was for me? Or, is he doing what my gut feeling was telling me and not shooting me straight? I tend to think he was just trying to pump me up with all this positive talk and not really giving me the cold hard facts.

Thanks for any help any of you can give me or insight to any of this...

Shody

[Cowgirl918]

I am so sorry to hear your news. The early diagnosis stage is the worst I think. Still trying to make sense of it all. I will not attempt medical advice but I would think that a second or third opinion is certainly in order. And be sure to take someone with you to the appt to take notes. Put your questions on a list and don't leave without answers. Seems simple but our brains shut down from shock and over load after a few minutes and the list really works. You may be in great general health so I am wondering if someone is minimizing the likelihood of side effects. It's your body. Take a time out, so to speak, and get those other opinions. There are many on this board who have been through similar events. Stay in touch and Good luck.

[cathy123]

Not sure but I am guessing that the antiviral drugs are some sort of immunotherapy which would be a available to you if the cancer were to come back and spread. Hopefully you won't need that, but good to know you would have options.

It sounds like a second opinion would be good as you need to be comfortable you are making the right decision. For stage 3c I think everyone will recommend chemo. This is your best chance to kill any lingering cells before they spread. The normal chemos are folfox which is oxi infused every two weeks followed by 48 hours of 5 fu. Most people get a port for this. There is another protocol called xelox which is a higher dose of oxi every 3 weeks followed by two weeks of the xeloda pill. I had this and did not need a port, but I only did 4 rounds of oxi. Many people still get a port with this protocol.

The main long term side effect is neuropathy. For most people the nausea can be managed. Everyone reacts differently but in genera the chemo nurse told me most people tolerate these chemos pretty well.

Best of luck to you!

[midlifemom]

Shody,

Seems to me you're not comfortable with this oncologist. So get another one - one thAt you're comfortable communicating with.

Regarding nausea, you should explain this fear to the oncologist - this is why you need to be comfortable with your doc. Anyway, ask about Emend, fantastic anti nausea med. Not everyone needs it, but it works.

Good luck, let us know whAt you do.

[jens22]

Sorry to hear about all of this...but I have to answer your questions.....

#1 I had a Power Port which is what most people receive who get Folfox Chemo. Once it heals you can do anything.
#2 I am the Biggest Nausea baby there is. I asked the Doctor for Resue drugs to take home. Compazine to be used every 4 horus and Zofran every 8 hours. Plus they give you stuff in the IV.
I had very little naseau or vommiting and the meds in the IV plus an occasional rescue med and I was good.

#3 I lost weight with the Surgery but Now on chemo.

A doctor told me something that I will never forget....We cured you...we removed the cancer...the chemo is just to catch anything that might have escaped.

Stay strong..You can do this.

[Nik Colon]

From what you mentioned, they removed all the visible cancer but want you to do chemo to catch any floaters. This is standard. Folfox is usually standard for CRC, all chemo is different for different cancers and multiple types even for the same cancer. Every one reacts different. There are some side affects, usually more from the oxi if your get folfox. I didn't have too much nausea and did not lose weight. They give you steroids with the infusion to prevent nausea and also give you meds. I had a port installed and after it heals it should not interfere with your weight lifting.

[michellecairn]

I too am a big nausea baby. Before starting chemo, I specifically remember vomiting on my daughters 1st birthday because I was sick and took all my antibiotics at the same time. My daughter just turned 17, so I went almost 16 years without vomiting.

I started chemo on a Monday, and I ended up vomiting just once the following Saturday evening. I'm not going to lie, it was completely horrible and I basically stopped eating and drinking because I didn't want to go through that again. That obviously was not a good idea because I ended up in the ER on Sunday because I was dehydrated and weak. They gave me fluids and extra nausea meds and some meds to help with stomach cramping. When I went back to the dr. on Monday I was still really weak. I ended up getting another round of fluids (saline, dexamethasone, zolfran, and Ativan) every day through Thursday of that week.

Now on the weeks I get chemo, I get that round of fluids with my chemo, and I get it again when they disconnect me from my 5fu on Wednesdays, and I go back in Friday through Sunday to get the same fluids again. I also take a pill form of dexamethasone every day that I don't have chemo or get the fluids. There have been a few times here and there where I feel like I'm starting to get nauseous, but then I take a compazine and the feeling goes away. Not exactly sure if this is what is keeping my nausea at bay, but it works for me.

[Deb m]

With a port you can continue to work out. My husband had 12 rounds of folfox(last two without oxi) and overall he did pretty well. He did have some nausea, but was controlled with meds. He also had issues with neuropathy (numbness in feet and fingers), sensitivity to cold, but most of it resolved after treatments were done and it did not prevent him from doing things while he had it. He was a stage llbT4a. This February will mark his five year anniversary of being ned. I think doing chem is very important to kill any cells that may still be floating around looking for a place to set up shop again.

With you history, I'm assuming they did a complete genetic work up. for lynch ect. If not, they probably should.

We traveled to MDA for a second opinion and continue to go there for all our followups even five years later. If you need any information on MDA, let me know. I can give you the oncologist's name that we see which I highly recommend.

Best of luck with everything. Everything can seem so overwhelming now, but it will settle down some soon. Hand in there!

deb m

[dianetavegia]

50% of Stage III are cured with surgery.

[jhocno197]

Everyone handles chemo differently.
There are pretty good nausea meds, so they can probably find something that works for you, but you will probably feel at least a little nausea till they get it just exactly right for you.
Chemo does have long-term side effects, but they are not the same for everyone, and some people get off without really bad ones. Unfortunately, there's no way to know which way anyone will end up.
Once you heal from 'installation' you shoukd be fine to work out with a port.

[O Stoma Mia]

...I am a bodybuilder and have spent 30 years in the gym this year.,.
I'm already back in the gym working out lightly and my abdomen feels great. I'm avoiding any abdominal exercises...
QUESTIONS I HAVE:
1) I'm scared about getting sick (nauseous) on chemo and losing my appetite and getting even smaller (losing more weight). I have spent 30 years in the gym building muscle and now I don't want to lose all that by going on chemo. I know to some people this may not be a big deal or should not be my priority, but remember, bodybuilding has been my life and what I live for. So its extremely important to me to not lose all I have gained.

There are other members here who have expressed interest in weight training. Maybe some of them will chime in and have something to say. For example, tchan8888, as well as others, have posted in this area before.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=45836&p=335924#p335924
https://thomaschan8888.wordpress.com/tag/weight-training/

[NZJay]

Hi Shody.

I had a similar diagnosis to you over two years ago and I'm doing fine.

I was a competitive power lifter when I got sick. Lost 45lb before I recovered from surgery but I had a lot of issues getting food in.

I lifted all through chemo but honestly chemo was hell on earth and my training was weak, but I still did it.

Bright side; the weight comes back fast once you start training and eating again.

Any questions or advice I can help with just holler.

Best wishes - Jay

[Felicitym23]

I was also at the gym every day training and eating well before I got cancer.
I was orginally told I was Stage 3C but I am now Stage 4. It can happen that quickly.

I had to chose between living or dying. I chose chemo... I think anyone that dies while doing chemo was probably already very sick.. If they passed that quickly.

You are thankfully at a good staging. I have not been at training for 16 weeks. Chemo is not fun but having no energy to live is far worth more to me and my family than muscle gains.

You are probably still in shock and trying to process everything but chemo will be needed to mop up the cancer in other lymph nodes.

You may still be able to train everyone is different. I have picked up hand weights on my good days but I have tried to stay away from the gym as its a hot germ infested place. I will get back there. Its only a few months out of my life to save my life.

Felicity

[Ron50]

Hi Shody,
It sucks that you are here and that you have cancer. For a start I can say with some conviction that you can survive , I have just passed my 18 yr still cancer free ex stage 3c colon cancer. I would love for you to breeze thru this with no nausea no weight loss and no problems. Realistically you are going to have some problems , be it nausea or neuropathy. You really have to listen to your body. Remember you are fighting a life threatening disease, this is no flu. Sometime you have to back off a bit to let your body deal with the disease and not damage and fatigue that you may cause by overdoing things. It is funny when I was in treatment I was the king of bland. If I did not feel I could eat a meal I would make a bowl of oatmeal porridge on milk with a big dollop of honey. I lost no weight despite 48 weekly sessions of chemo and by eating my bland foods including lots of fresh fruits my blood counts did not alter from normal once in the entire time . It has not been a perfect survival, I have suffered and continue to suffer undiagnosed auto immune problems but I am still alive and still no cancer. Good luck on your journey and my best wishes for a cancer free future,,,Ron.