Newly Diagnosed

Newbie2015 · December 2015

Hi All - I am new to this forum and find the posts very informative and extremely helpful. (Stage III cc.) I had surgery in November and the surgeon said he removed everything but recommended that I have Folfox (12-cycles/6-month). Removed 25 nodes of which 5 were involved. I will have my first appointment with my onc on Dec. 16 and will likely start chemo thereafter.

Could someone please share their experiences while on chemo? Something positive, I hope! Needless to say, I am scared/worried about the violent reactions to Folfox I've read in other blogs. Any pointers on what I can do to keep the side effects manageable so I may continue to maintain an active lifestyle or at the very least lead a normal life while on chemo? Will the side effects linger long after the final treatment? While I realize that the last 2-3 treatments will be the hardest it is my hope to finish all 12 but one day at a time....

Thank you!

All my best,

Lynn

Trubrit · December 2015

Welcome to the forum, Lynn

Sorry you've found yourself in this spot, but you'll not regret joining our exclusice little (sadly, not so little) club.

First, let me assure you that going into treatment with the best positive attitude and with knowledge, helps you deal with whatever comes your way with aplomb.

You may already have gathered that everybody's expereince with treatment, differs; even if they are on the same set of meds; so, the list I am going to share with you is MY list. In fact, I have not heard of anyone else who expereienced MY list, so don't be scared by it. Here is a link to MY LIST http://csn.cancer.org/node/292593

There are folks here who breezed through FOLFOX, working the whole way through, with minimun side effects. The thing is, we just don't know what is going to hit us hard and what is going to pass us by.

My biggest suggestion going into this is keep a detailed notebook. Write down any and all that you are experiencing and any quetions you have and go through them with your Oncologist before your Chemo appointments. My Oncologist was very patient with me, becuase I had some really wild quesitons; but, they were concerning to me, and so I asked them and he answered.

Definitely keep an eye on the neuropaty. That can take over and quickly.

Something to have in the house from the start is a pair of gloves. You become acutely sensitive to cold, and it can get to the point of not even being able to hold a cold spoon. Drinking and eating cold foods can cause the sensation of your throat constricting, which is terribly frightening.

Good luck! We look forward to helping you along the way and soon, it will be you posting to the newbies with advice and support.

Sue - Trubrit

Newbie2015 · December 2015

Trubrit said:
Welcome to the forum, Lynn
Sorry you've found yourself in this spot, but you'll not regret joining our exclusice little (sadly, not so little) club.

First, let me assure you that going into treatment with the best positive attitude and with knowledge, helps you deal with whatever comes your way with aplomb.

You may already have gathered that everybody's expereince with treatment, differs; even if they are on the same set of meds; so, the list I am going to share with you is MY list. In fact, I have not heard of anyone else who expereienced MY list, so don't be scared by it. Here is a link to MY LIST http://csn.cancer.org/node/292593

There are folks here who breezed through FOLFOX, working the whole way through, with minimun side effects. The thing is, we just don't know what is going to hit us hard and what is going to pass us by.

My biggest suggestion going into this is keep a detailed notebook. Write down any and all that you are experiencing and any quetions you have and go through them with your Oncologist before your Chemo appointments. My Oncologist was very patient with me, becuase I had some really wild quesitons; but, they were concerning to me, and so I asked them and he answered.

Definitely keep an eye on the neuropaty. That can take over and quickly.

Something to have in the house from the start is a pair of gloves. You become acutely sensitive to cold, and it can get to the point of not even being able to hold a cold spoon. Drinking and eating cold foods can cause the sensation of your throat constricting, which is terribly frightening.

Good luck! We look forward to helping you along the way and soon, it will be you posting to the newbies with advice and support.

Sue - Trubrit

Wow!

Hi Sue! Glad I found this forum and thanks for the welcome.

That's quite an impressive list and a helpful one too. Thank you also for sharing your experience/pointers. It is reassuring to know others may not have experienced the same degree of side effects you did but it is always best to be prepared. I also agree that going into chemo with the right mind set makes all the difference. All I can hope for is that the next six months will breeze thru.

Best,

Lynn

NewHere · December 2015

Sorry You Are Here

But it is a good place

This provides an overview of what I have gone throughand some thoughts

http://csn.cancer.org/user/237551

(Stage IIIC, 11 out of 21 Lymph nodes)

I started to go to minor league baseball games. (My bloodwork was always good, so risk of infection was low) Sometimes I would take a nap for a few hours before the game in order to make it through. Some days a bit more tired than others, but walking around the ballpark and talking to people around the ballpark really helped me physically and mentally. Really be careful of the cold. It did not hit me for couple of sessions, but when it did. Wow. Drink room temperture or hot drinks. After awhile I did have a technique to drink colder drinks, very small sips and let it warm up before swallowing. Had the pain in throat. In mouth, it was not so bad. Be careful on neuropathy, it also can be something that sneaks up. I need to head out now, but wanted to say welcome and give some initial thoughts.

Jen1988 · December 2015

i am sorry you have to be

i am sorry you have to be here but welcome to the site. I am a caregiver to hubby who was dx a few month ago. He hasn'd had folfox yet but he just finished the 1st chemo 5FU and radiation and waiting for surgery next month.

His respond to 5FU was not pleasant as he experienced side effect since day 1 and kept worsening till the end that the dr had to reduce the dose. My suggestio is to have you ready before your chemo treatment such as eating good and supply with enough vitamin (During chemo we are not supposed to take any supplement except multivatimin)Hubby was not ready when he started chemo as he was still in shocked from the diseases and the next day had pet/ct, port placement then start chemo. I was told and red some articles if we have positive attitude and strong immune body, side effects at least reduced. Hygiene also important. Hubby had really bad mouthsore, onc let him get teeth cleaning now to prepare for folfox. Also told if we have clean mouth hopefully mouthsore won't be bad. Because he had hand foot syndrome from 5FU, dr also suggest taking i-glutamine for the next folfox at day 1 also to prepare for neuropathy from oxi.

Newbie2015 · December 2015

Jen1988 said:
i am sorry you have to be
i am sorry you have to be here but welcome to the site. I am a caregiver to hubby who was dx a few month ago. He hasn'd had folfox yet but he just finished the 1st chemo 5FU and radiation and waiting for surgery next month.

His respond to 5FU was not pleasant as he experienced side effect since day 1 and kept worsening till the end that the dr had to reduce the dose. My suggestio is to have you ready before your chemo treatment such as eating good and supply with enough vitamin (During chemo we are not supposed to take any supplement except multivatimin)Hubby was not ready when he started chemo as he was still in shocked from the diseases and the next day had pet/ct, port placement then start chemo. I was told and red some articles if we have positive attitude and strong immune body, side effects at least reduced. Hygiene also important. Hubby had really bad mouthsore, onc let him get teeth cleaning now to prepare for folfox. Also told if we have clean mouth hopefully mouthsore won't be bad. Because he had hand foot syndrome from 5FU, dr also suggest taking i-glutamine for the next folfox at day 1 also to prepare for neuropathy from oxi.

Thank you for the replies.

Thank you for the replies. It appears that the extremity of the side effects differ from one to another. I read a post (October 2015) from Fatherjohn that his experience is tolerable (was into his 5th treatment) and I hope he continues to do well. Mind over matter? That gives me some hope. I am generally very active and maintain a healthy diet; hence, perhaps this might pay off. Nevertheless, I appreciate everyone's support and look forward to staying in touch. I, of course, welcome any additional insight.

Trubrit · December 2015

Newbie2015 said:
Thank you for the replies.
Thank you for the replies. It appears that the extremity of the side effects differ from one to another. I read a post (October 2015) from Fatherjohn that his experience is tolerable (was into his 5th treatment) and I hope he continues to do well. Mind over matter? That gives me some hope. I am generally very active and maintain a healthy diet; hence, perhaps this might pay off. Nevertheless, I appreciate everyone's support and look forward to staying in touch. I, of course, welcome any additional insight.

Sadly, no

I don't mean to pop a bubble, but I have been healthy and eaten mostly Organic forever and have positive energy in trumps, and yet, I fell hard during treatment. In fact, I believe to an extent, that being healthy tipped the scale a little against me. I have not been on any kind of medication (other than Thyroid) ever. I took some Tylonol once, about six or so years ago, maybe ten. So to my thinknig, maybe the onslaught of such harsh medication is what whacked me.

I still believe that there is really no way to ward off, or prepare for treatment. Definitely try your best to live a healthy lifestyle (smoking and exsesive drinking is NOT good in any situation), and keep that up as much as possible.

AND, don't deny yourself a treat now and again (I still fight that. The every now and again part, as I have far too many treats).

Sue - Trubrit

beaumontdave · December 2015

Lynn, I'm one who "breezed"

Lynn, I'm one who "breezed" through the Folfox regime, was a little more tired and sensitive to hot and especially cold. Drank non-cold drinks, cold water felt like an electric shock. Had the pressure bulb with the chemo on my waist with a line to the port by my collarbone. got disconected twice which required ER trips to fix. The effects slowly went away after Folfox, it took a little over a year for fingers and toes to stop feeling wierd and tingly. I'm a contractor and I continued working through the treatment, doing hard physical labor at times. Didn't change my diet, had drinks when off-treatment[not saying it was the smart thing], but I endured it reasonably well. Others, as you've read, had a much harsher experience. I hope you have the easier route and whip this stuff quickly and permanently...............Dave PS: I was 49years old during chemo, eight years ago this month, just so you have all the facts.

Newbie2015 · December 2015

beaumontdave said:
Lynn, I'm one who "breezed"
Lynn, I'm one who "breezed" through the Folfox regime, was a little more tired and sensitive to hot and especially cold. Drank non-cold drinks, cold water felt like an electric shock. Had the pressure bulb with the chemo on my waist with a line to the port by my collarbone. got disconected twice which required ER trips to fix. The effects slowly went away after Folfox, it took a little over a year for fingers and toes to stop feeling wierd and tingly. I'm a contractor and I continued working through the treatment, doing hard physical labor at times. Didn't change my diet, had drinks when off-treatment[not saying it was the smart thing], but I endured it reasonably well. Others, as you've read, had a much harsher experience. I hope you have the easier route and whip this stuff quickly and permanently...............Dave PS: I was 49years old during chemo, eight years ago this month, just so you have all the facts.

Thank you so very much for

Thank you so very much for posting your experience. Glad you breeze thru the treatment. It gives me hope! At anytime during your chemo treatments did the doctor reduce the dosage re Oxy for fear that there may be permanet nerve damage? I am trying to gather the facts so that I may be prepared when I see the Onc. Stay well and God Bless!!

jay_rogers · December 2015

I was diagnosed with colon

I was diagnosed with colon cancer recently after a routine examination. I was very fortunate and most of all blessed that the surgery performed took all the cancer at stage 2. I'm now recuperating. This is my 5 th week. I was very fortunate. I have been given a new beginning, a new start, a second chance in life.

sflgirl · December 2015

Newbie2015 said:
Thank you so very much for
Thank you so very much for posting your experience. Glad you breeze thru the treatment. It gives me hope! At anytime during your chemo treatments did the doctor reduce the dosage re Oxy for fear that there may be permanet nerve damage? I am trying to gather the facts so that I may be prepared when I see the Onc. Stay well and God Bless!!

Bearable

Hi

This year I had 12 rounds of Folfoxiri plus Avastin. Had the Oxaliplatin through round 10, which is a very common place to stop due to neuropathy. I had painful sensitivity to cold in my hands and mouth. Difficulty eating, just not hungry. Had chemo with a 5 FU pump Thursday thru Saturday and went back to work on Monday. I was able to work the whole time but some days were not easy. Mostly due to fatigue and weight loss. I was in good shape before it began but did not live a super healthy lifestyle (I like red wine).

Everyone is different, but I'll bet you can do it. Now that the chemo is over I have neuropathy in my hands and feet from the Oxy. I don't care, I'm NED for now.

For me, I personally believe the longer you can stick with the most chemo the better chances you will have along with surgery.

Please stay in touch.

All the best to you,

Andrea

beaumontdave · December 2015

Lynn, I had the full dosage

Lynn, I had the full dosage throughout chemo, I had reoccurances in the liver at 2-3 years out[3 mets]and again2-3 years later[1 met]. I asked if they wanted to do Folfox again, and the onc. said they didn't want to risk permanent neuropathy. I asked if the chemo wasn't totally effective because the growth was relatively slow. I got a big" maybe" for an answer, you get a lot of "maybes"and "we aren't sures" in this game. I'm NED now for 1yr4mos, and figure to "hold my breath" for a couple more years, then be cautiously nervous after that. I don't know that any of this helps or comforts you, but all I have is my story to share. Merry Christmas to you and all who come here.................Dave

Newbie2015 · December 2015

beaumontdave said:
Lynn, I had the full dosage
Lynn, I had the full dosage throughout chemo, I had reoccurances in the liver at 2-3 years out[3 mets]and again2-3 years later[1 met]. I asked if they wanted to do Folfox again, and the onc. said they didn't want to risk permanent neuropathy. I asked if the chemo wasn't totally effective because the growth was relatively slow. I got a big" maybe" for an answer, you get a lot of "maybes"and "we aren't sures" in this game. I'm NED now for 1yr4mos, and figure to "hold my breath" for a couple more years, then be cautiously nervous after that. I don't know that any of this helps or comforts you, but all I have is my story to share. Merry Christmas to you and all who come here.................Dave

Thanks again!

I appreciate the additional responses/pointers. I am prepared to embark on this journey (hand in hand with God)! I will stay in touch.

PS: Jay - Congrats to you. Very happy to hear that surgery alone did the trick. I believe there is a greater purpose for things that have been laid out for us. We need to keep the Faith!

Happy Holidays to all and God Bless!!

Newly Diagnosed

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