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Completed Round 1

Mchapp's picture
Mchapp
Posts: 96
Joined: Jul 2009

I went for surgery on June 4th for “diverticulitis surgery”….an abscess occurred in-between the colon and left ovary…when the second occurrence of the abscess happened 1 moth later, I went for surgery – the Cat scan and Pet scan prior to surgery did not show any tumor…but during surgery a stage 4 tumor was diagnosed
– guess what – it was not diverticulitis….….the colon/rectal surgeon removed 12 inches of the colon – and I now have a colostomy. 93 lymph nodes were resection and are all negative! Post surgery PET scan shows no mets to any other organs…the docs are staging me as a stage 2, due to the tumor perforating thru the colon wall….chemo and radiation are planned.

I have had the first round of Folfox (oxaliplatin and levoleucovorin) and came home for 2 days with 5-FU…the side effects have been – lower jaw discomfort when first putting food or liquids in my mouth and fatigue on day 3….

The schedule for treatment is 6 rounds (every 2 weeks) of Folfox, then 4 weeks of radiation then another 6 rounds of Folfox…all the studies show this is for prevention – since the micro – cells cannot be detected if they are “swimming” around in my abdomen…

Just looking for any/all comments on what I will be facing with Folfox and what I can do to decrease the fatigue, keep counts on track and just someone to communicate with!

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

go to WWW.frs.com, order this you get 14 days free it will give you lts of energy. Love it!!
If you are a man it will give will increase blood flow to special places. I have to hide them from my Husband.

I am going for my third round of Chemo Tuesday and my worst is the un controlable pooh fest, So watch out for that.

Good luck
Prayers an Hugs
Winney

dorookie
Posts: 1736
Joined: Jul 2007

I just ordered some, I sure hope you are right about it helping with energy.

Thanks
Beth

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi M

Let me welcome you to the board - you've already made a great decision by showing up here - come on in!

I'm sorry you are experiencing this, but you are going to find many of us with the same or similar diagnosis and have been through or are going through what you are currently in.

I did the Folfox with Avastin and Xeloda for 8 months. The folfox contains a powerful drug called Oxaliplatin - it is a platinum based chemo drug, 3rd generation, the latest, and it is effective but is very strong and has numerous side effects to deal with.

That's an aggressive schedule of Folfox that they have you on...12 treatments = 6 cycles every 2 weeks is alot to take...very few people can tolerate the toxicity of that drug for very long, so just be aware of that.

The side effects you would notice would be neuropathy, which is pins and needles feeling in the hands and feet. Grabbing a cold item out of the fridge or freezer can feel like an electric shock. Running your hands under cold water can hurt as well.

Also drinking cold items immediately after Oxy for 5-7 days will be extremely painful.

You can ask them about Magnesium Sulfate by IV...it helps with the neuropathy and helps the cold sensations in your hands/feet...and allows you to drink cool or cold liquids quicker.

Treatment may start out every 2 weeks, but you will find that it can be difficult to stay with that schedule. Your blood counts and blood platelet counts will always determine when you get the chemo...you might have to rest some in between to build those levels back up, so be aware of that. Your doctor knows this but just hasn't said anything.

That's the reader's digest of how it should go - can always change and not everybody takes things the same, because everybody's body is different and reacts differently.

Not trying to overwhelm you, but I wish I had this information when I first started, but I had to learn the hard way. When I see someone new come on board, I like to give them a shortcut on what to expect.

I hope this helps, M

I'll be praying for you.

-Craig

Mchapp's picture
Mchapp
Posts: 96
Joined: Jul 2009

Craig,
Thanks for the insite and words of wisdom! I SO greatly appreciate it! I have researched the info - but I need to hear from the ones actually receiving this toxic stuff. I guess I am just waiting to see when I will begin to feel the side effects and how to work thru them...the plan is that I will do the 6 rounds - then a break during radiation...then back for the additional 6.

I have sent many patients to CSN - I work for The American Cancer Society - and now that I am on this side - tought I should use some of my own advice! And boy I am glad that I did tonight - it works! Thanks!

This is my week off and I want to be ready for Round 2....I will inquire about the Mag Sulfate.

Again, thanks for your time and I am sure I will be "picking" everyone's brain for the next few months!

seanslove's picture
seanslove
Posts: 71
Joined: Jul 2009

Sundanceh,

What is really sad,is like you,I have learned here on the boards that going in this morning for hubbys second round of folfox is not a guarnette it will take place. His doctor have never told us a time could come when we go in and something could be off causing them to delay treatment,and I am not about to tell him this going in this morning. I swear,if this happens today,my husband will say I am done. At this point I do not blame him a bit. He is down to 136 pounds last Wed, from 139 on the last chemo day,and he started upon admission to the hospital in May at 173,which was about 10 punds down from where he was when he was healthy,or so we thought healthy in March.
When we saw his onco on Wed,he complained of his stomach hurting and not being able to eat much as he felt like it was bubbling up in his throat. So she rushed us off for an ultra-sound,which I had to be the one to call to get results for instead of the other way around. They know how scared we are,you would think they would do everything they could to reduce our level of anxiety. Then for the bubbling thing,she seem unconcerened and put him on Proloce(sp) sorryy,OTC as a cure. When he told her he still was consitipated,she gave him yet another laxitive.
He was diagnosised at the end of May with stage four mestatic adenocarsinoma,yet did not get his first round of chemo until two weeks ago today. Everytime he tells the about a probelm,they just throw another test on him and give him another drug and say it's ok. To this day,going for round two of folfox this morning,we still have not been told how many rounds of this to expect. And intersting enough,in doing some research yesterday,I discovered his 46 hour drip of 5FU dosage last time was 4368mg/500ml,and all the research shows the drip levels at a recommened 2200-2400mg/500ml's. That's like double the dose. Have you ever heard of this?

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi, Seanslove

I'm not sure why they would have his drip level doubled - that's worth checking into to find out why - doesn't sound right and I would want an explanation.

The doctors never tell you about much, just enought to keep you coming back, it's unfortunate, but they wait till you bring them the sympoms instead of giving you more of a heads up.

The blood counts and blood platelets will always determine whether chemo is on or off for that week. I usually did my bloodwork on a Wednesday and Chemo on Friday, so they knew whether I was going to have it before I went to Infusion - I've read where others have their blood tested the same day of Infustion and it's a go or no go. I liked my way better, it eliminated the doubt and worry - maybe they could do this for you.

I would also consider getting another opinion, because it sounds to me like they are not telling you something and just trying to give you something for your husband to move you on down the line, instead of trying to help.

For the bubbling problem, have somebody switch you over to NEXIUM; this works better than Prilosec OTC and he would need to take it every day for a couple of months initially - this might help settle down his digestive system and allow him to eat more without the GERD effects and whatnot. See if he can drink Ensure or Boost to help keep his weight up, that does work too - Vanilla, Chocolate, and Strawberry are available - Walmarts or Sam's Club will have it cheapest.

I'm worried about his weight loss - try the Ensure and Boost as I mentioned above at least 3x a day to at least try and maintain weight until he can add it. And maybe Nexium will settle him down so he can begin to tolerate some solid foods - biscuits and gravy or eggs and stuff like that which is gentler on the stomach.

I'll be praying for you guys - do consider getting another opinion - you and your husband at least deserver better treatment going through this and deserve to be treated as people instead of being looked upon as a burden. That makes a big difference in the outcomes too...we all want to feel like a person and not a number.

Please let me know further about what happens...my heart is breaking that I can't make your pain go away...but maybe some of this will help you. I hope so.

-Craig

seanslove's picture
seanslove
Posts: 71
Joined: Jul 2009

Thank you Craig for all your advice,as yesterday was the day from h**L!!! We arrived at the short stay unit at 7:30 as requested and by ten till 8 we were in out room:that always seems to go fast. At 8:30 our wonderful nurse hooks up his port and starts the dextros drip,but guess what,forgets to put it on the regulator pump,therefore,in matter of minutes,over half the bad has free flowed into him,that's on top of the fact she had to force the flush because as she put it,his port was being difficult.
If all that to start wasn't bad enough,it got worse! Of course now they are doing the blood draws on a stat bases prior to mixing his chemo,ok that's not so bad and only takes a half hour,up comes the chemo drug with a note attached:Must have urine sample before mixing avastin. Avastin I ask,what's that,oh that's the new chemo protcol being added today. UHU,never heard about that before now. Well what happens if he can't pee as he went twice before we came,and why didn't someone tell us before hand so we could be better prepared. Answer:Don't know,just is.
Now keep in mind,timing is everything as home infussion has to come and bring the 46 hour drip of 5fu,therefore,they have to have a time to come fix his CAD pump. So,of course home infusion calls right at 9 and the nurse can not give them a time cause she says until he pees and they adminsiter the avastin,he can't leave. This was at 9,at 9:30 they started the Oxyiplatin/Lecouvorin drip which only takes 2 hours,then followed by the boulus of 5fu which takes about 7-10 minutes. From 9:30-11:30 the nurse drives us nuts comstinly asking him about the urnie sample,then threatens,and yes I said threatens him with cathetrizing him to get the sample of which we both went through the ceiling and told her no way in hell!
I said call his doctor NOW! Of course I get his oncology nurse instead,who tells me how I should explain the importance of all of this to him,to which I said if he can't go right now he just can't go and you are not I repeat are not going to extract it anyother way. Therefore,you can either deal and just not give him the new drug today or we can just leave,doens't matter to me. Ok,now 12:30 hits,still no sample,they still won't give home infussion a time,and here comes our nurse from hell again. Are you ready for this one. She says: Well we really needed the urine sample to get the protien markers,but the doctor says since you did not have this drug last time,she feels it's ok to go ahead,and should you pee before you leave well get the sample then,and oh by the way this drip takes an hour and a half, took till quater after one before it arrived.
Ok that means he should be done around 2:30 right,well these idots told home infusison to come at 3:3o not 2:30. OH MY STARS,there we sat,with him in a chair,as there were no more bed open at 7:30,until 3:30 in the afternoon.You can only guess,his back was killing him,which I just kept pumping victin and oxycodones down him for,his feet swoll up,and his mood was less then tolerable,as was mine.
We finally get home,get himin bed,feet proped up,and you guessed the pain was so bad he couldn't eat or sleep. Finally about 1 this morning,I stuck him in a warm tub of water,of course watching the port like a halk to aviod water contact,where we stayed for the next hour,wamring the water every so often.
Finally he calmed down,the pains started to subside,and we both finally relaxed. He still didn't get to sleep until about 4 am,but slept till 5:30,got up for about half an hour,dry heaved,and as of now,8:12 am is still sleeping. I only hope he sleeps for several hours this round.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I'm so sorry to hear all of that. That's alot to go through when you're already not feeling well. Just sounds like these guys are not very nice to you at all...I would really consider seeing if you can find another facility that treats you better.

I never had to give a urine sample before taking Avastin - they based it all on the bloodwork and how long I was out of surgery. Don't know about that one, that's new to me.

There are good and bad people in the medical profession, you just may have some bad people. I would report to your oncologist and if it does not improve, see if there is another facility. You don't need the stress of the staff working against you and not with or for you.

I'm really sorry to hear about this...you had a bad day alright.

Stay after 'em.
-Craig

seanslove's picture
seanslove
Posts: 71
Joined: Jul 2009

Craig,

Thanks for the kind words,and believe me I rang phones off the hook this morning. Our first time there things were so great,I believe we just had a nurse having a bad da yesterday. I have thrown numerous fits this morning while hubby is sleeping and gotten tons of appoligies for how we were treated,not to mention told how much different things will be in two weeks. I have gotten lots of good advise on decreasing his pain today,and we are working on this as we speak. Got another drug,ugh,however,it is suppose to give him some relief as well as aid him in sleeping. I guess where everyone is so different there is not anyone protocal for how to main pain and how to mange side effects. However,I am relieved to have been told everything sounds normal and to plunge forward with our day here from home. I know he is relieved with this as well,as going back to the hosiptal or doctors office is about as low on his list as one can get. Again thank you. I am so glad to have this space to vent and others who understand,as those around me I know have grown tired fast and do not understand or know what to say.

afretiredky's picture
afretiredky
Posts: 28
Joined: Jul 2009

During a colonoscopy May 8th, a mass was discovered in my sigmoid colon. During a CT scan another mass was discovered on my right kidney, the "silver lining" the doctor said. June 15th my colon was resected and my right kidney removed, which left me with an 11 inch incision, but no colostomy. 2/15 nodes were positive for microscopic mets from the colon and 0/7 from the kidney even though that mass was bigger. It was suggested that I start the Folfox route every two weeks for six months. I had a power port put in July 13 and started chemo July 20. Radiation was never given as an option.

I have to say that after one dose of this stuff I am ready to quit. Will I, no, not yet anyway. I had the same trouble with my jaws with eating and drinking. Felt like I was biting into something extremely sour. I figured out its the salivary glands reacting (other people mentioned this too). Not pleasant, but decreases every day. The biggest problem I've had so far is with eating and drinking period. I have to eat something every two hours because I can't seem to eat much at one time, nor can I drink much. Finding something that I can tolerate is the other problem. My upper palate feels like I've been eating pizza that was too hot...the gum is peeling. Nausea is my other constant companion now. I took Phenergan day 2 and 3 which mostly kept me sleeping and made me shaky, but now just try to keep something in my stomach if I can. I was told the fatigue is something that is just a by-product of it all.

So here I am, 7 days out and just starting to feel better. I tried getting out of the house Friday and Saturday just to feel human again. I'm wondering how I can go back to my job if this stuff is only supposed to get worse. As much as I admire everyone on this site for posting what they are dealing with, I get more scared every time I read what someone says they are going through in terms of their chemo. I know everyone reacts differently, but it all unnerves me and I almost don't want to know. But like a peeping Tom, I keep creeping back.

Good luck Mchapp!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

It's a long and winding road as the Beatles used to say.

I sympathize with your story and like everyone I read about, I wish it was in my power to make all of the hurt and pain go away.

Reading and doing is of course 2 different things, but keep this in mind, we are able to write this down because we personally went through it and while it is very hard it is doable. The old saying No Pain - No Gain applies here. If it were EZ, everyone would be doing it - but it is very hard - the hardest thing you will ever do in your life.

And you've got to keep going - the alternative is much worse. I'm into my 6th year now, so I know how long a battle it is and why they call it the War on Cancer - it's felt like a lifetime for me at different times. I'm facing new stuff too, so it's never easy.

The board is a good place to come, because there are stories of hope and miracle finishes. Alot of Stage IV survivors like myself are here and you can extend your life and keep going. There will be good and bad days - set your goal to get through as much of the chemo as you can and then see where you are at.

I only made 8 of 12 treatments with the Oxy but finished up with Avastin and Xeloda and I'm still here.

The very 1st chemo treatment I did with Folfox, I marched into the onc's office and told him I was quitting and getting ready to meet the Lord and go home to see my sister in Heaven.

After much soul searching, I decided to go ahead and fight for life, because I wanted to live so my life had a purpose and I really wasn't done yet - the treatment side effects were so bad, that it unnerved me really good. But I decided not to let the Cancer and the Chemo beat me. My whole life has been a beating and a preparation for the Cancer battle in looking back at it.

I know you will be strong and tough, all of us are. We are faced with the biggest challenge there is in life - and that's LIFE itself.

Remeber, Cancer does not define you, but how you Fight and Live with Cancer DOES define you. And you are a winner!

All my best to you
-Craig

afretiredky's picture
afretiredky
Posts: 28
Joined: Jul 2009

I thank you for your kind words Craig. Some days I feel as if this has been a horrible nightmare and I will wake up at any moment...and I guess I feel that way because I've always been healthy. To suddenly enter this unknown and unfamiliar territory is frightening and one that I think I'm still in denial about. Well, as in denial as I can be with the incision that resembles one of our major highways on my belly. I can handle a roomful of schizophrenics (my former military job), giving birth, even birthing a kidney stone, but this is whole 'nother story. And, as I need to keep reminding myself, I'm not the only one in this boat.

How is it that you were able to stop the Oxy after the 8th treatment? What's Avastin and Xeloda? I can't figure out (yet) which is causing the side effects...really I would have no idea anyway which does what.

Thanks again!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I was able to stop the Oxaliplatin, because it compromised my immune system and destroyed my ability to produce blood platelets at the level necessary to continue chemo...plus once you get to 8-10 of those treatments, the level of toxicity builds up so high in the body that any time that you do the treatment, the side effects of neuropathy can become "permanent." It's like playing Russian Roulette. And then they want you on it every 2 weeks, but as time slipped by, that timeframe stretched further and further out to where my last one took over 2 months, so we decided that the level of risk vs benefit was too great and so we discontinued that drug. But we kept on the Avastin and Xeloda.

Xeloda is the pill form of 5fu - it's different because it enters your body as a certain chemical component and when it finds cancer, it morphs to another chemical compound and goes to work on the Cancer.

Avastin is not a chemo drug, but is usually added to the cocktail as soon as possible. When you do surgery, you have to wait so many months before this can be introduced. Anyway, it's rather unique and effective, because what it does is "choke off" the blood supply to the tumor, which is how Cancer spreads itself. Think of it in terms of knocking out the bridge from one side to the other. With the bridge out, there's nowhere to go.

Cancer can form an elaborate network of "bridges" in which to expand its trail and by choking off the blood supply, you kill one its essential components - blood.

I've got the battle scars too that show I've been in the fight...bowel resection scar run from about 2" above my belly button and goes south below the pubic hair line.

Liver resection starts about my breastbone and goes south by 5" and then makes a right and goes about 6" over my right rib cage. That one busted me up pretty good.

Hope this helps you somemore - talk to me anytime, my life is nothing if I can't share my experiences with people and try to help them.

You take care
-Craig

Mchapp's picture
Mchapp
Posts: 96
Joined: Jul 2009

Afretiredky,
I have been eating and drinking fine - other than the jaw discomfort that occurs if I go too long - so I just "graze" all day...weight is staying stable...I have also found by eating so frequently - I have not had the nausa...so far no meds to counter act that...

We must go on the same day - I am day 7 out too and I felt better this past Friday...took a few "cat naps" Fri thru Sun and that seemed to help a great deal.

I am trying to find what I can do to make this Folfox and 5-FU a little easier...I know what you mean by the unnerving of hearing what others are feeling....fortunately I have not had much - but I am sure it will come!

I wonder why they are not doing radiation with you....if you find out - I would like to know...I will not start radiation until October....I had 93 lymph nodes - all negitive - no other organ involvement...and 2 consultations with the same treatment plan...

My motto is FIGHT LIKE a GIRL!!! Hope you will do the same!

afretiredky's picture
afretiredky
Posts: 28
Joined: Jul 2009

Say, I like that motto!! I will have to try the grazing thing. I do feel better if I can keep something in my stomach. Still working with the drinks and trying to find something that doesn't make me gag...I think it's leftover issues from the bowel prep as I had to go through it twice in several weeks. I've lost 18lbs since May 8th. This was NOT the diet plan I was looking for, but if it stays off I'll take it.

I'm curious too as to why I had so few nodes taken out. So I will ask about that as well as the radiation part. My next day is Aug 3 and from what I understand, it depends on my bloodwork. They will do my blood tests the morning that I'm supposed to be infused and if it's okay, they proceed. But from what I've been reading on here there is a chance that it might not happen if it's out of whack. So we'll see.

We'll have to compare notes after our next round and see how things go.

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

Hi,
I had the Folfox treatment every two weeks with Erbitux every week from 1/09- 7/09.
Yep it was pretty rough, but just keep the faith and you'll get through it. I kind of
knew by the 4th one what to expect, when I could get out of bed and when I was
gonna be hungry. First 2 days, I was okay the 3,4 were pretty bad and usually by
the 5th I could get out. My hubby planned market and costco excursions for me
to get me out of the house. I remember being so sick the first two weeks, I had lost
7 pounds in one week, that's when I decided that I couldnt keep eating all the vegetarian
good for you stuff, and told my hubby to buy me a pint of mashed potatoes from KFC, it was a great
comfort food, probably not healthy at all, but at least I felt comforted and ended up not
losing any weight. I too wish I knew about this board before I went into chemo, I felt so
alone and at one point got pretty depressed with the chemo. If you need any cheering up
I know a great place....... this board, the people are so caring and supportive of each other.
I just joined a few days ago but readiing all the posts are great! Thanks everyone!
Pokismom

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