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Treatment starts on Friday - Info appreciated

Lan53
Posts: 13
Joined: Apr 2019

Hi,

I have been reading the topics for a few weeks. I was diagnosed on March 28th with rectal cancer, Stage 3, two lymph nodes are iffy, not sure of but they are assuming they are affected. 

I have been through tests for five weeks and have been told they can treat and get me through this as there are no other areas affected as of now. I start 5-FU Friday and radiation on Monday for five weeks. I then wait eight weeks for surgery and chemo twice monthly for four months after surgery.

I am looking for info on the 5-FU chemo and any tips anyone may have. Needless to say I am scared, have no pain as of now and I know I am in for a long road. I will have the pump chemo and go two times per week - one day for blood work and the next for a refill of chemo. I realize everyone reacts different to treatment, just looking for thoughts you may have.

Thanks so much and prayers for all,

Lana

 

 

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I was on 5FU pre surgery. It gave me terrible fatigue where I'd just lie in bed staring out the window. I was on radiation at the same time and it also causes fatigue so I'd certainly expect that. That was all for me. I didn't lose any hair or get nausea or anything else, just the fatigue. It's a little different for everyone, though.

Good luck and welcome!

Jan

Lan53
Posts: 13
Joined: Apr 2019

Jan,

 

Thank you so much for the response. I am trying to be strong and hoping to work at least half days if possible. I guess I will know soon. The radiation oncologist said the radiation side effects will be a few weeks out. I will hope for the best and try to stay positive.

 

Take care,

Lana

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

That's true, it doesn't start right away. But it also linger for a couple of weeks after you've finished treatment.

Jan

Trubrit's picture
Trubrit
Posts: 4784
Joined: Jan 2013

I had the Radiation and 5FU and it hit me hard, so be warned, the following is not pretty. 

I had an uncontrolable bowel, and couldn't make it from the radiation center to the house without soiling myself. I was so grateful for DEPEND underwear, and suggest you buy some, just in case.

And the pain was the most horrific I have ever experienced. Well, thats not quite true, as I had a C-Section without anesthetic and that was bad (to say the least), and the pain from radiation was equal to that, except the C-Section was over and done with, whereas the radiation went on and on and on.  The only way I can describe it, it was like having child birth contractions, day in and day out for weeks. 

I did lose my hair to the point of looking like Gollum from Lord of the Rings, and so I shaved it off. I was never bald, bald, like breast Cancer patients. Just sprogs of random hair sticking out of my head. 

I slept and awful lot. I would fall asleep while talking. Sometimes I would have to crawl around, because I had no energy whatsoever. 

I had awful radiation burns and the skin around my bottom and down my inner thighs went black. I suffered from open, weeping sores. I also had this weird senstation where I couldn't bare the touch of clothes on my skin below my waist. Even thinking about it now, makes my skin crawl, and I also got a real taste for going commando, which I do to this day. 

I was really blessed to have a member of the forum private message me, and warn me about the extreme side effects that can happen. If I had not known, I would have been very frightened by what was happening. 

So, I basically had the extreme side of radiation side effects, but for the most part, others do not go through as much trauma. 

As for the 5FU, I had 12 weeks of that along with oxaliplatin before radiation, and found that being hooked up to the bag for six weeks straight was not bad at all.  

I did get severe neuropathy during radiation, and while they say it is caused by the Oxi, I was at least eight weeks out from that when I got it. My hands and feet went purple, and I suffer to this day from neuropathy in both hands, legs and feet.  So, keep a keen eye on that, becasue you need to catch it before it gets too bad. 

As for tips, keep out of the sun, and when you do have to go out, wear a hat and long sleeves.  

Drink lots and lots of water to keep hydrated.

You may get really cold, inspite of the weather outside. Its a cold that comes from the inside out.  It was 106˚ F one day, and I was shivering under an electric lap blanket and a quilt.  I LOVED the electric lap blanket. 

A Sitz Bath was a Godsend.  Warm water feel so good.  

I had to live with friends during radiation/5FU as I live 170 miles from the big city, but I wished I had had a Bidet. I have one now, and think that it too, like the Sitz Bath, would have been a great help. 

Your appitite may tank but it is important not to lose weight because it changes the placement of the tatoos or stickers that they use as guides.  

I wish you all the best as you move forward.  Remember, most people don't suffer so much, and hopefully you will be one of those lucky ones. 

Tru

Lan53
Posts: 13
Joined: Apr 2019

Trubrit,

Thank you for sharing your journey (what a ride), I am just hoping for the best possible and will update as I get started with this. Prayers for you and I will have lots of questions I am sure. Three days and the journey begins, thank you for the tips.

 

Lana

Annabelle41415's picture
Annabelle41415
Posts: 6154
Joined: Feb 2009

Mine was rectal cancer also and started with xeloda (pill form) and radiation for 6 weeks, then surgery to remove rectum, then healing for another six weeks and then started the IV FOLFOX.  FOLFOX is a combinatio  that contains Oxaliplatin which is a cummulative drug.  It makes you very cold sensitive to anything including fridge, drinks, grocery store, water so be careful when approaching these things after infusion.  I'm sorry that you have to be here but we are a great group that can offer much help and support to help you get through.  I'm sure that you will have a ton of questions, but we can help you along the way.  Wishing you the best and let us know how things are going.

Kim

Lan53
Posts: 13
Joined: Apr 2019

Kim,

Thank you for the info, I have read your story and you are an inspiration for sure. I am sure I will have lots of questions and will continue to ask for advice. I have no idea what the chemo after surgery will be as I am just taking this one step at a time. I had two pages of questions last week and I figure I will ask as I go. This seems to be an excellent source of info and tips for the journey I am starting. I have a great support team although they have no idea, I have learned a lot from reading the posts here.

You look amazing and I hope to push through this and maybe share information for others in the future. Thank you for the support.

Lana

 

Tom M.
Posts: 33
Joined: May 2019

I'm new to this myself. One treatment to date. Everyone here knows what's running through your mind right now. God, family and our new friends here will guide you through it all. 

Lan53
Posts: 13
Joined: Apr 2019

Tom,

Family, friends and a great support group are in place as well as a great medical team I feel sure of. God has walked beside me for six weeks and it is only in the one area. Friday will be the start day and I plan to fight this and make the best of a bad situation. I have been reading the good, bad and the ugly and have no idea so yes I am having some scary feelings. After reading this group for four plus weeks I at least know I am not alone and can do this.

Good luck to you and stay strong as I intend to.

Lana

airborne72's picture
airborne72
Posts: 275
Joined: Sep 2012

Lana:

You are receiving some excellent responses.  They are honest and real.  In addition, they show just how everyone's experience with this disease and its treatment is as unique as the individual.

I had rectal cancer.  After a couple of months of diagnostic testing, I completed the 5 1/2 weeks of Xeloda (pill form) and radiation therapy.  I never lost any hair but I did gradually become fatigued.  It was a different type of fatigue; a very persistent and pervasive fatigue.  My appetite decreased and I lost about 5 pounds (I weighed 140 when diagnosed).  During the final weeks of the treatment my bowels really reacted.  But, my experience was not at all comparable to what Tru suffered.

The hospitalization for my resection surgery was very painful.  I attribute that to substandard pain management and the fact that I was the unlucky host of several adhesions in my gut from prior surgeries (inguinal repair and radical prostatectomy).  In addition, because of difficulty removing some of the surgical instruments from my rectum after the procdure, the surgeon decided to install an ileostomy to allow my resected rectum ample time to heal.  I was presented that surprise when I recovered from the anesthesia.

My oncologist monitored my progress with the ileostomy and prescribed a pill form of medical marijuana to stimulate my appetite.  I was once again losing weight (down to 133) and he would not begin the adjuvant chemo therapy until I stabilized and strengthened.  Finally, six weeks after my resection surgery I began the adjuvant chemo therapy (FOLFOX6 through a port that was installed during my previous surgery).  I only completed three sessions of the treatment.  It was knocking me down to such an extent that I said no more.  My weight was dropping rapidly (down to 128); my energy level was sporadic and unreliable; I had no stamina; and worse, my mental health was becoming problematic (depression).  I realized that quality of life was more important to me than quantity of life.  Understand, however, that I was 66 when I made that decision.  If I had been younger then my decision would have most likely been different.

Depending upon your occupation, you may be able to work part time.  Realize that the radiation treatments occur daily and sometimes that process is not expeditious.  It pokes a big hole in a day.  One week after I completed my sessions I returned to work part time for six weeks, some days not working at all and some days working fulltime, dependent upon my energy level and bowel constitution.  There was no way I could have worked at all while taking the FOLFOX6 through the port.

I had my reversal surgery (removed the ileostomy) 14 months ago.  I am still NED (no evidence of disease) but I am learning each day how to adjust to this new normal of low stamina and unpredictable bowels. 

Good luck in your journey and for sure, continue to benefit from the wealth of information and experience on this site.

Jim

Lan53
Posts: 13
Joined: Apr 2019

Jim,

 

Thank you for the info, I plan to hope for the best possible outcome and will do all in my power to get through this journey stronger than before.

You have had a journey for sure, prayers for continued improvemant.

Lana

 

Kzzararat
Posts: 6
Joined: Jun 2018

Jim,

I was diognosed with Stage 4 colorectal back in 2016.  I had radiation, surgery to remove my rectum and place an iliostomy (temporary thank God!) and then 6 months of Chemo.  With each step came different chanallenges.  Take it as it comes, don't over think things.  Have a good positive attitude!

A few things I didn't see mentioned in the other stories was the

- Cold sensitivity, drinking a cold drink was actually very unplesant and eating ice cream out of the question.  Of course I had my treatement in the dead of winter so I wore many pairs of socks to play in the snow with my daughter!

-  neuropathy, tingling in your fingers and feet.  This is a side effect of chemo.  I was very concerned with this but it has gone away with time.  My feet are still somewhat numb but it doesn't affect me badly. 

- Curly hair, I did loose much of my hair, but when it came back it was curly.  This was a pleasent suprise for me!

I hope all goes well for you! 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

He's going to be on 5FU, not Folfox, so there shouldn't be any neuropathy.

Jan

Trubrit's picture
Trubrit
Posts: 4784
Joined: Jan 2013

I didn't have neuropathy while on the FOLFOX, but it appeared when I was doing the 5FU and radiation. 

Tru

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Oh, really? That's the first I've heard of that. I thought it was always the oxaliplatin that did that. Wow. I stand corrected.

Jan

Trubrit's picture
Trubrit
Posts: 4784
Joined: Jan 2013

It may still be the Oxi, and I just had a very delayed response.  I know that my Oncologist told me it was the Oxi, but he couldn't understand why it started three months after I had finihed the FOLFOX. 

Now, my own thoughts on this, are.  My 5FU pump failed one night, and I went eight hours without an infusion - I think I was getting it pumped every 30 seconds. When I got it fixed the next morning, at the clinic, they started pumping it ever 5 seconds to make up for the 8 hours I lost overnight and THAT is when the neuroptathy started. I think I was getting way too much 5FU at one time. 

So, make of it as you will.  

I guess the moral to my little story is, get the pump fixed as soon as it stops, just in case. 

Tru

Canadian Sandy's picture
Canadian Sandy
Posts: 486
Joined: Jul 2016

I thought the same as Jan.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I do have to say that I never had an infusion pump. My 5FU was in a balloon type of thing inside of a plastic bottle. They called it a baby botttle. It would slowly deflate as the chemo went in over a week, I think it was. That was the first chemo I had and when they warned me about not letting the dogs sleep with me because of it and the spill kit they gave me it was somewhat of a wake up call as to how serious and dangerous chemo is.

Jan

Lan53
Posts: 13
Joined: Apr 2019

I started the 5-FU pump yesterday, radiation will start on Monday. 29 hours in and all is good, I have dreaded this so bad although I guess it takes awhile for the side effects to start. Thank everyone for posting as I have been reading for a few weeks before posting.

This has been so helpful to know what to expect and read the experiences of everyone. I have been a bundle of nerves and this has been a tremendous help in getting ready to start this journey.

Prayers for all,

Lana

annie4145
Posts: 97
Joined: Jul 2018

Just stay on top of any anit-nausea medicine.  Don't try to "tough it out". I hope your treatment speeds by. It seems like a long process in the beginning but before you know it , it will be over.  For my it was primarily fatigue in the early weeks of treatment.  Radiation burns bothered me towards the end, as well as diareah.  I hope that you are one of the  people that get through treatment with minor side effects. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Good point. Take anti nausea pills before it gets bad, same as pain pills. Its a lot easier to prevent them than to get rid of them once you have them.

Jan

Twinzma
Posts: 207
Joined: Jan 2018

Sorry I have been off the board a while and missed your post. My husband did very VERY well while on 5FU. He maintained his weight, had a stronger than normal appetite and never had any nausea whatsoever. The only thing that got to him was he fatigued a little bit for a couple of days after and his hair thinned just a little. Even though his hair thinned on his head, his eyelashes grew so quickly and curly he had to keep them trimmed. I tried to get him to use the curler for it, but he said that was too girly for him. He has had more symptoms now on the Chemo pill than he did with infusion which he is going to be asking his oncologist about. 

I am so sorry that you are in this, I can only imagine how overwhelmed you must feel. Know though that this group of people here are just so amazing and they will help you ever step of the way. Hugs and prayers!!

SandiaBuddy's picture
SandiaBuddy
Posts: 858
Joined: Apr 2017

Funny about the eyelashes, I never posted this because it seemed unimportant, but the hair on my arms and legs just kept growing--not more of it, it is just like the genetic code that told it to stop growing all my life was altered. It continues to this day.  I bought myself one of those barber's clippers to trim it down to an inch or so, so I do not look odd when I wear shorts or short sleeve shirts.  Cancer, the gift that keeps on giving.

Lan53
Posts: 13
Joined: Apr 2019

I had company for the week and have been working daily so far. I am on my second week and so far I haven't had any side effects other than a nap when I get home from work. I have cut my days to six hours this past week. I had the needle changed out and new cheno for the week last Friday and so far so good. I continue to be told that this will most likely change in two weeks or so. I realize this affects all people different so I am waiting to see what my journey holds.

Thank you all for the comments, advice and words of encouragement, I am staying positive and waiting for the unknown. I have a hard time with the drinking as I drink coffee and tea but that doesn't count. I never drink 64 oz. of liquid in a day but am trying very hard. After the drinking I am full but am still eating regular so far. I actually gained two pounds and my Dr. was very pleased, I hope I don't continue to gain two pounds a a week but it sounds as if that is better than losing. I am ask daily by my son and employees if I am drinking and they see that I eat as well. My son will text and ask if I am drinking, great support team on a regular basis.

So as of Friday I will have two weeks of the five to six weeks down and I will update as I go.

I hope all are doing well as I continue the journey that most of you have already completed at some point. I haven't even ask what chemo I will have after surgery, I am taking one step at a time and will ask  more questions while waiting the eight weeks for surgery.

Lana

 

SandiaBuddy's picture
SandiaBuddy
Posts: 858
Joined: Apr 2017

Putting on a few pounds, especially in advance of surgery, is a good thing from my perspective.  The most important thing right now is surviving, not looking good.  Maintaining or gaining weight is postively correlated with survival, to the best of my recollection.  

Lan53
Posts: 13
Joined: Apr 2019

I will take whatever comes my way, I had lost a few pounds before being diagnosed as I have gained in the past year or so and didn't attempt to lose it. I worked really hard to lose and now it may have found me again. :) I will survive the weight as I'm not trying to impress anyone. :) The Dr. told me to go to dinner after the chemo refill, I just hope i continue to want to eat. I fugure the next week or two may change my eating habits. I am learning as I go.

Lana

SandiaBuddy's picture
SandiaBuddy
Posts: 858
Joined: Apr 2017

Everyone responds differently.  My appetite sure changed.  One interesting bit of folk wisdom is not to eat your favorite foods while on chemo, because you may permanently lose your taste for them.  My tastes certainly changed on chemo, but returned to normal afterwards.

After surgery I was down by about 30 pounds.  I have put them back on now and look a bit chubby in comparison, but I will take it for the statistical survival advantage.

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